Author: highde22_wp

Adapted from episode 94 of The Perfect Stool podcast and edited for readability with Rich Maurer.

Lindsey: Welcome to the podcast, Rich.

Rich Maurer: Yes, thank you, Lindsey. I really appreciate you having me on your podcast. I have to say I really enjoy your podcast, been listening for probably over a year. Then there’s one thing I did not see, though until recently, that you’re actually sitting on a little stool. So I assume you intended that as a play on words. Well done there.

Lindsey: Thank you. That’s funny you say that because I thought of that right at the very beginning and not much since then. No one’s ever mentioned it. But that was part of the design of the cover photo.

Rich Maurer: Sure. Now everybody knows.

Lindsey: Indeed, now they do. Secret’s out. So you reached out to me because I had interviewed Bo Berman from Layer Origin about their human milk oligosaccharides or HMO prebiotic. And you’d had some interesting results that you’re tracking using stool tests following your use of that prebiotic, and we’ll get into your results in a minute. But can we start with what your starting conditions were that made you want to try it?

Rich Maurer: Right, you know, I listened to your podcast and others, and I hear so many people that are really struggling with all sorts of health problems. And I always considered myself a fairly healthy person, even though lifelong migraines, lifelong IBS-D, decades of asthma, lots of family history of various things. But I said to myself, I’m pretty fit, I exercise. I don’t have heart disease, diabetes, cancer, you know, I’m on some prescriptions, but whatever, you know, I’m pretty healthy. But I realized I was fairly fit but not actually that healthy. Then COVID happened actually, that was a big point, January of 2021. Got COVID, for the first time, really bad case of it. Wasn’t hospitalized, so wasn’t life-threatening or anything but really, really sick for a couple of weeks and had some serious gut symptoms from that. A couple of episodes of excruciating gut pain, and my wife was so kind, she started looking for some foods and diets that could help during that time. So I look back on that time, and I say, I thank God for COVID. And I say that carefully not to say that I’m glad that COVID exists, that people would be harmed or killed from it. But the impact of COVID in my life was really beneficial, was a turnaround, helped us to look at our diet or overall health. So we started on that time, a FODMAP diet, which I’d never heard of before. Not sure if it helped, but I think just eating good food and getting rid of other things. And then the first thing I noticed was migraines went away. I had a migraine 24 hours for two weeks. Shortly after that, they were going away. And I think that was mostly elimination of sugar is what that was. And then through nutrition, continued exercise, and then the prebiotics –  HMO is one prebiotic we’ll talk about –  I was able to eliminate migraines, IBS-D, asthma. And a more recent discovery, which I didn’t start with, was that my HbA1C, you know, it’s an average of your glucose in your blood, went down by 14% from a pre-diabetic level to an optimal level, and then also lowered my cholesterol, triglycerides, and LDL by 15%. And then went off all prescription meds, and I feel like at age 59, I’m healthier than I’ve been in decades.

Lindsey: That’s awesome. And so I’m sure people are interested in particular in the IBS-D. Do you feel that the HMOs had an impact on that? Or did something else prior to you trying HMOs have an impact on that?

Rich Maurer: That’s a great question. And I’m not absolutely certain. But getting off of dairy products seemed to have the biggest impact. I think it’s multifactorial, but for me, I think it was the dairy products. And I’ve gone my whole life and I don’t understand that, you know,

Lindsey: I am lactose intolerant. And I knew that and I took pills for that, you know, lactose digestant tablets for years. But it wasn’t until I read this book, that ironically was sitting in the bathroom at a place I was working at. And it was all about poop. Every single page was a different kind of poop. And then there was one that was called the lactose poop. And it was like loose, painful. And I was like, that’s exactly what it is when I don’t take enough enzymes, or when I’m not careful, or I eat too much. And then just try and throw some ice cream on top. That was exactly what it was like. It took me reading that book to realize that this. That was long before I was a gut health coach.

Rich Maurer: Sure, yeah. Interesting. Just curious. I’ve just started experimenting with lactase. I’ve only done it a couple of times. I’ve been so quote unquote afraid of dairy products. Although yogurt, some fermented dairy doesn’t seem to bother me at all. Does Lactaid help in the short term and occasional?

Lindsey: When I eat dairy now, I will take a lactase enzyme. Yeah. And Lactaid is one of the brands of those. Yes, it definitely helps. But I found that it was never foolproof, right? Like if I ate too much, and then I just tried to try to stick a dessert on top that had lactose in it or, or if I just didn’t time it right, you know, maybe I didn’t take enough with my meal, or my dose wasn’t big enough, or just there’s too much food in there. It just didn’t mix up right and take care of the lactose. It was really bad coming out the other end.

Rich Maurer: Gotcha, gotcha. No, thanks for that. Yeah, I stay away from dairy. Most of the time, it’s an occasional treat.

Lindsey: So can you just explain a little bit about what HMOs are, since it’s been a while since I’ve had that podcast on them?

Rich Maurer: Sure. HMOs stand for human milk oligosaccharides. And oligosaccharide is a medium chain sugar, it’s non digestible by humans. So HMOs would fit into the larger category of a prebiotic fiber. And again, they are soluble fiber, indigestible to humans, but they directly feed the good gut bacteria. One of the things that really fascinates me about HMOs is the fact that it’s the third leading ingredient in human breast milk and mother’s breast milk. And I used to work in hospital labs, I got a Bachelor’s of Science degree, but most of my life, I’ve been a pastor. So I definitely look at life through what we call a Biblical worldview. And I see this as the creator, the divine designer, just putting this into his creation, the fact that a large part of mom’s breast milk contains these HMOs, which again, since they’re not digestible by the baby, or adult and any human, it doesn’t help the baby directly. It only feeds the baby’s beneficial bacteria. So that was all designed and put into HMOs. But obviously, HMOs are not human breast milk. It’s a derived thing in the laboratory that contains only the HMO and not the other aspects of the breast milk derived from cow milk. I think that’s correct, right?

Lindsey: Yeah. That’s what I recall from my conversation with Bo Berman. Yeah. And that’s a beautiful perspective. The other perspective I heard on a podcast yesterday was, it may be that we’re just the host for the bacteria, that they’re actually the ones in charge, and we’re just carriers for the bacteria. There’s more of their cells than there are of us.

Rich Maurer: That’s a very pessimistic viewpoint. But yeah, okay.

Lindsey: Just a floating viewpoint. Anyway, what kinds of changes did you see in your stool test results and other test results after being on the Layer Origin HMOs? And what dose were you taking of them?

Rich Maurer: Right, so let me back up and say, before I discovered HMO, I was taking some other prebiotic fibers, about five different ones for a while. Now I’m down to two or three. So I did a stool test while on five prebiotic fibers, did a second stool test, then started on an HMO, and then the third stool test. I’ve got a couple of videos out that monitor the progress. But I saw, by far, the most dramatic changes just with the HMO. And there are three keys that I saw, which I think are really absolutely crucial for a healthy gut or elimination of what would be a leaky gut. The opposite of that would be an increase in butyrate. I’m just going to list these, and we can talk about them: an increase in butyrate, an increase in gram-positive bacteria, which are the “healthy” bacteria in the gut, and an increase in a certain type of gram-positive bacteria, specifically Bifidobacteria. I can talk through those a little bit.

Butyrate is a short-chain fatty acid that is actually what’s called a postbiotic. So the gram-positive bacteria in your gut produce that as a byproduct of their own metabolism, which is again, another one of these symbiotic relationships that benefits all of us. All the species in our body need butyrate. In fact, in the colon, there’s a single layer of epithelial cells called colonocytes. The only thing separating all the fecal material, all the bacteria, all the toxins is a single layer of these colonocytes that separate all of that from your bloodstream. So when we talk about a leaky gut, we’re talking about fecal material, especially the toxins that get through that single layer of colonocytes. Something called tight junctions will open up and allow these things to get through. But the colonocytes, that’s their food. They consume butyrate. So that will heal them and give them the energy that they need to repair or maintain a healthy gut. So that’s butyrate, a short-chain fatty acid.

Secondly, an increase in gram-positive bacteria. And why that is so important is because the gram-negative bacteria produce a toxin called LPS (lipopolysaccharide) that exists on the cell wall of the gram-negative bacteria. If it gets into your bloodstream, it’s a toxin. If it gets in your bloodstream, it can travel anywhere in your body and cause systemic inflammation, leading to all manner of metabolic disorders and diseases. So it’s extremely important to reduce that, and one of the ways you reduce LPS is by reducing the numbers of gram-negative bacteria. And you do that by also increasing the gram-positive bacteria. I’ll give you my butyrate results. I went from 52% butyrate. And now let me say these numbers are from a website called Biomesight. So what you do is you take your gut test, and any gut test that has fast Q data, you can upload it to Biomesight. And I love it because they track the changes. So I’ve got three stool tests that are uploaded to Biomesight. So I can literally chart it, it’s actually charted for you, the increase is specifically in regard to butyrate. They’re not measuring directly the amount of butyrate in your gut, they’re measuring the bacteria that produce butyrate. So when I talk about percentages, I’m talking about the percentages of butyrate-producing bacteria. And mine went from 52% to 65%, which, at that time, several months ago, put me at the 100th percentile of everyone that had the data on Biomesight. So that was a massive increase. Since then, my daughter, actually, she’s second place, as far as I know, she went from 41% to 67%. And now she’s at 99%. I just talked to a friend yesterday, he went from 49% to 74%. So that’s a tremendous amount of butyrate, right? You look at his distribution chart, and it’s literally off the chart. It’s so high, and my daughter and this friend only utilized HMO as a prebiotic, whereas I had the other prebiotic fibers prior to that.

Lindsey: Which stool tests are you using that you can afford to be doing this frequent tests on everybody?

Rich Maurer: Right? Well, of course, I’m not paying for their tests. Yeah. But paying for my wife’s and mine. I used what used to be Thryve Inside (now Ombre) through discount codes. I don’t pay more than $60. It’s not cheap. But compared to some others, a couple $100 each, it becomes more tenable.

Lindsey: And is that 16S? Or is that metagenomic?

Rich Maurer: That’s 16S.

Lindsey: Okay.

Rich Maurer: Yeah, I believe. So butyrate results have been fantastic. And then talking about an increase in gram-positive bacteria. It’s my daughter’s who holds that record. My friend increased his greatly, his went from 50% (so these are also percentages). So he had an even amount of gram-negative and gram-positive bacteria to 87% gram-positive bacteria, where my daughter went from 62 to 89% gram-positive bacteria. So the vast majority of their colon is filled with healthy, gram-positive bacteria, which again is going to reduce the LPS and the toxins, etc. In regard to LPS, just for a moment here, this is just an analogy that helps me think about the damaging effects of toxins. E. coli is a gram-negative bacteria. And most people are familiar with E. coli outbreaks and they cause hospitalization, and unfortunately, sometimes death. That’s a different toxin that’s called a Shiga toxin. And that toxin, of course, it’s similar, right? It gets in your bloodstream, it travels throughout, shuts down organs, especially kidneys. So I say that toxin from a gram-negative bacteria can kill you fast, whereas LPS from gram-negative bacteria can kill you slowly. That’s ultimately what it’s doing. But it’s still a toxin. And it’s this slow killer, really is the way I look at it.

And then thirdly, an increase in a certain type of gram-positive bacteria, specifically Bifidobacterium, and this is where I did a lot of research just looking for reputable research papers, meta-analysis, etc. And again, what I’m seeing is when you have type 2 diabetes, you consistently show a decrease in Bifidobacteria. And what’s happening is that is decreasing insulin sensitivity or increasing insulin resistance, I can talk about that for a moment. Insulin is what drives glucose into the cells. So if you picture your cell is waiting there, it needs glucose, right, to produce ATP and energy and feed itself. And if the receptors for the insulin are blocked, it can’t get the glucose. That’s insulin resistance. And if that happens, and it continues to happen, of course, your bloodstream increases the amount of glucose, and that then is a measurement of HbA1C, which is a three-month average of glucose in your bloodstream. And that leads to the beginning of type 2 diabetes. But when you increase the Bifidobacteria, it increases the insulin sensitivity, which allows that channel of glucose to regularly enter into your cells. So what I saw is a pretty dramatic decrease. I was at 5.7, my A1C, which was just inside prediabetic, and barely. If I tested the next day, it might have been 5.6. But over about four or five months, it went down to 4.0, which is an optimal level. And as far as I can tell, the only thing I did different was HMO. And of course, during that time, my Bifidobacteria went from almost undetectable. It went up some on  prebiotic fibers and then just skyrocketed on the HMO. And specifically, again, in a symbiotic relationship, one particular species of bacteria that skyrocketed only on HMO is Bifidobacterium adolescentis. And it produces a different type of short-chain fatty acid, propionate. And a key butyrate producer, Faecalibacterium prausnitzii, consumes the propionate produced by the Bifidobacterium adolescentis, and then in turn produces butyrate. So, again, just that symbiotic relationship working together. Those are my changes, both on the gut tests, blood tests, and symptoms.

Lindsey: Yeah, and I have certainly seen studies showing that Bifidobacterium decreases. I think Bifidobacterium infantis is the primary bacteria that starts in the gut of a child who’s born vaginally, at least. Then all Bifidobacteria in general decrease as you age, and I think those decreases are associated with some of the problems of aging or the normal consequences of aging. So yeah, an increase in Bifidobacteria seems like it would be a net positive for sure.

Rich Maurer: Yeah, for sure. Interestingly, I’m helping some family members and friends through this process. We’ve done before and after tests on an HMO, and so far, all of the adults have almost undetectable Bifidobacteria. That’s a small sampling, but it makes you wonder if the average adult has almost zero Bifidobacteria, which is the very thing we need to have lots of. It’s fascinating. Also, in my own experience, I have found that probiotics, which people talk a lot about, hopefully help some people. I was on probiotics for years, and I didn’t see any changes in symptoms. Obviously, it had no impact on my gut test actual bacteria. I’m still not on probiotics, but I do believe that if you’re feeding the bacteria with the prebiotics, then you can seed the gut with probiotics. I think that can be really beneficial. For example, I talked to my friend yesterday, who has skyrocketing gram-positive bacteria and fantastic butyrate levels. His Bifidobacteria was still quite low. It wasn’t nonexistent; it was quite low. So we talked about getting him on a quality probiotic that has mostly Bifidobacteria, and he thought it’s a great idea. We’re going to retest, and I’m really excited to see how that might turn out.

Lindsey: Yeah, that was something interesting to me when I had the folks from Layer Origin. They have a probiotic prebiotic combo formula, the Pure HMO Synbiotic, and I was just looking up the strains in it. So it’s Bifidobacterium bifidum plus the strain number, Bifidobacterium lactis, Bifidobacterium longum. They’ve got three of them in there so that you can help feed it and seed it as you’re going. It’s very reasonably priced at that. I’m on Amazon right now, and I can provide a link for people. It’s $29.69 for 40 billion CFU. Plus, it’s got the 1000 milligrams of HMOs in it. So I thought that was a good deal.

Rich Maurer: Yeah, yes. Thank you for that. Honestly. Can you see how many days supply it is?

Lindsey: I assume that that’s a one-month supply.

Rich Maurer: Let me see. It’s two capsules, 30 servings, okay. By comparison, just the HMO powder is 1000 milligrams. So only HMO, but it’s a 45-day supply.

Lindsey: Right? So you’re going to spend a little bit more to get the probiotics. But if you need to seed that as well, like if you’ve got no Bifidobacteria at all.

Rich Maurer: Exactly. And probiotics get crazy expensive. So that is a good deal. Thank you for reminding me of that one.

Lindsey: Yeah, I think that’s what I had originally tried to take. I just went out after our last recording –  confession: this is the second recording for Rich because I forgot to press record on the first recording. And after our last recording, I’m like, “You know what, I need to try those HMOs again.” So I went out and got some, and I’ve been taking them I’ve been tossing them in my yogurt each day along with any number of other things that I try. I’m not as scientific as you or I should say, I don’t have the patience that you do, to try one thing at a time and have not done the pre and post testing, but just seeing how it impacts me.

Rich Maurer: You’re taking the one with probiotics or no?

Lindsey: I’m just taking the straight HMO powder. I do have another Bifido. I just keep getting free stuff. So sometimes I take a lot of stuff just because someone gave it to me. So yeah, I was on a different probiotic. And now I’m on to another one that I had leftover in my closet.

Rich Maurer: Oh, I’m sure you’ve got a lot. But if you don’t retested, how are you going to know if it’s helped you?

Lindsey: Believe me, I have all sorts of signs. But I’m do have post-infectious IBS. So I just keep getting it over and over again. So my body will tend to overgrow Proteobacteria, which are those gram-negative, and that will just keep reoccurring. So I know that I always need to be fighting that battle.

Rich Maurer: Well, interesting. Yeah, I could see that. Interesting, though. My wife, HMO increased her Akkermansia too much. Akkermansia is a very good, beneficial bacteria. But what happened is she went so high, 20%. Normally, like 1% is pretty good. Most people I found can’t really grow any. She went to 20%. What it did is that reduced butyrate and her gram-positive bacteria, the very good things we’re talking about. So I just said, “Stop taking HMO.” I mean, it’s just one thing. Some people call it the Goldilocks. Yeah, it doesn’t work the same for everybody. So that should be said.

Lindsey: Yeah, there’s an interesting thing that I’ve noticed on stool tests, which is that often people who have H Pylori in their gut have elevated levels of Akkermansia. I don’t know if the test you’re taking shows that one. But I assume that because it causes constipation and some amount of delay in emptying, there’s more time for those Akkermansia to be feeding on the mucus layer. They feed on that mucus layer, so there’s more fuel for them, and then they increase. That’s my theory anyway.

Rich Maurer: Thank you for that. I’ll check to see if Ombre has H. Pylori. Yeah, that’s a really good clue.

Lindsey: Yeah. People who tend towards the Proteobacteria increase . . . Well, I actually just listened to a really good . . . Marc Pimentel, who invented the IBSsmart test and the trio-smart and has done a lot of research on SIBO. He’s a doctor at Cedars Sinai. In SIBO, it’s typically certain gram-negative bacteria that increase. They’re all in the family Proteobacteria. E coli and Klebsiella are two of them. Those are the ones that tend to be increasing in the small intestine in people with SIBO. If you are positive for post-infectious IBS and have positive vinculin antibodies, you typically have a diarrhea type of SIBO, not a constipation type. Although I have seen clients who have positive IBSSmart tests and have constipation type. So obviously things can mix up, like you can have an overgrowth of hydrogen-producing bacteria plus an overgrowth of methanogens, and somehow it all nets out to constipation.

Rich Maurer: Have you seen anyone who could still have H Pylori even though they’re asymptomatic? For example, my wife doesn’t have dysbiosis symptoms.

Lindsey: Oh, people have it all the time. I mean, plenty of healthy people have it. It may just not be overgrown. There’s an entire book written about how it has healthy impacts on us as well. That’s a classic in the world of gut stuff by Martin Blaser, Missing Microbes. The entire book is about H. Pylori.

Rich Maurer: Okay. Yeah, the fact is, it’s expanding our knowledge exponentially, and nobody knows for sure yet. So it is exciting to watch it develop. But certain things you do know with a fair degree of certainty.

Lindsey: Yeah. And your wife’s A1C level went down as well, right?

Rich Maurer: On HMO? It did, it did. But then, because of the results and I mentioned reducing butyrate and gram positive, I took her off of HMO.

Lindsey: Right. But what was the reduction for her?

Rich Maurer: So she was only on it for like four or five weeks, and she went from 6.0 to 5.4 or 5.

Lindsey: So in the pre-diabetic range.

Rich Maurer: Yeah, yes. Yeah. She went from prediabetic to normal.

Lindsey: Yeah. Okay. Again, with all of you, how can you be sure the changes can be attributed to the HMOs and not something else? Like any other diet changes or any other supplements?

Lindsey: Right, good question. In fact, when I did a video about insulin resistance and HMOs, my wife afterwards said, “Well, you know, about the same time you started HMOs, you started on cinnamon, and that is proven in good doses to also lower A1C.” And I was like, “Oh, you’re right.” So what I did is I took myself off of all that cinnamon for three or four months, I think at least four months, and then retested my A1C, and it went down a little lower yet. So I eliminated that variable. And as far as I know, I hadn’t made any other changes.

Lindsey: So if it went down from the 5.9 or it went down from the-

Rich Maurer: It went from 5.7 to 5.0, and then it went down from 5.0 to 4.9, which again is statistically insignificant, but the point is, it didn’t go up after going off the cinnamon.

Lindsey: Okay, right. At the very least, if you’ve got an A1C issue, you could take the cinnamon and HMOs. And you’d be in good shape.

Rich Maurer: There you go.

Lindsey: Yeah. And cinnamon is yummy, too. So I assume you’re taking pills, though, not just sprinkling it on your food?

Rich Maurer: Yeah, you know, to get three to six grams.

Lindsey: Oh, that’s a lot.

Rich Maurer: Yeah, that’s the recommended amount for reducing A1C.

Lindsey: Yeah. And I’m curious as you were reducing your A1C, and your wife, too, did you notice any changes in your energy or anything else?

Rich Maurer: Oh, good question. We both exercise and we’ve made those nutritional dietary changes. So I don’t think either of us noticed it, that I can tell.

Lindsey: Yeah. Okay. So I understand that your daughter, too, was taking the HMOs and that she had some other positive health changes?

Rich Maurer: Yeah, right. Sort of accidentally, you might say, within a couple of weeks of taking the HMOs, she noticed that her acne was improved. She would have had what would be called mild acne, I think in the spectrum of things. But she thought it significantly improved. And in one of my videos, she was kind enough to provide before and after photos. So that intrigued me, of course, so I found plenty of research papers that showed Bifidobacteria and the results that she demonstrated in her gut tests, indeed, can reduce acne.

Lindsey: I’m sure that’s very appealing to the teenagers out there.

Rich Maurer: Yeah, for sure. Or adults that have had acne. Exactly.

Lindsey: Yeah. And so you mentioned at the very beginning about having had COVID and some problems that developed subsequently. And I don’t know if you’ve probably listened to the episodes. Actually, I’m not even sure if I’ve published them yet because I’ve now got like five episodes sitting in my queue to publish. But there was at least one episode where someone was talking about having gotten an ulcer from COVID. And that’s a very rare side effect, which you were talking about excruciating stomach pain. I assume you wouldn’t know if that’s what happened to you.

Rich Maurer: Yeah, I don’t think so. So that was my first bout of COVID in January 2021. This past January 2022, I had COVID again, which I discovered over lots of testing over the summer. And then had a dramatic increase in symptoms. I first noticed some symptoms a couple of weeks after I had COVID in January 2022. But then, a dramatic increase in symptoms over the summer. So, lots of testing done and landed on COVID-induced autonomic dysfunction, which is just another type of long COVID symptoms and a wide variety of symptoms there.

Lindsey: Such as?

Rich Maurer: It would sort of take over and sneak up on me. And it’s never the same thing. And not always all the symptoms at once. But extreme exhaustion, diarrhea, and nausea, feeling flush, rapid increase in both tachycardia and bradycardia. So, an increase in heart rate, decrease in heart rate, increase in blood pressure. I never had a blood pressure problem in my life, and I’m shooting up to 160. Thankfully, in my case, (this can be very debilitating for some people), the symptoms pass quickly. You know, my wife says, “You’re the epitome of the phrase, ‘this too shall pass.'” Literally, Sunday afternoon, I just felt rotten for two hours. But while I’m sitting there, I’m thinking to myself, you know what, in about two hours, I’m going to feel good. And I did, so I’m very thankful for that. But, wide variety of symptoms. So, yeah, that might be something your listeners might key in on because I had a difficult time, first of all, understanding myself but also trying to walk through with my practitioner what this might be, and it seems my experience and things I’ve read that doctors just still even two years right into this COVID, post-COVID, aren’t understanding long COVID, aren’t able to see autonomic dysfunction symptoms, and then connect the dots.

Lindsey: Yeah, no, I have watched many webinars on long COVID and how to treat it and some of the tests that you can use to see what’s going on on the nutritional level. Because there’s a lot of oxidative damage to cells, and you know, you need your antioxidants, and heavy doses post-COVID. There is sometimes damage to blood vessels, and you need to keep those open. So I think L-Arginine. It is known for helping produce nitric oxide, which keeps your blood vessels open. So there are a number of tools that are out there, if you are dealing with that sort of thing.

Rich Maurer: I’d love to get the links to some of those podcasts because I have found so precious little, honestly, it’s just the standard, you know, plenty of hydration and electrolytes and exercise, you know, all things I’m already doing. So, yeah, that’d be great.

Lindsey: Yeah, no problem. So I will put all these links, by the way, in the show notes for the Biomesite where you can upload your results from Ombre and to your videos (here and here) that show the before and after photos and all the stuff, because they’re great videos. I mean, it’s really interesting stuff and you get to see the charts that you’ve made and of how things have gone up and down. Anything else that you want to talk about, though, before we get off?

Rich Maurer: I don’t think so. I think that about covers it, Lindsey.

Lindsey:  Okay, awesome. Well, I think that this is actually a much better conversation than our last one. So we’ve done well.

If you’re struggling with  bloating, constipation, diarrhea, soft stool, acid reflux, IBS, IBD or any type of chronic disease, etc. and want to get to the bottom of it, that’s what I help my clients with. You’re welcome to set up a free, 30-minute breakthrough session with me (Lindsey). We’ll talk about what you’ve been going through and I’ll tell you about my 3- and 5- appointment health coaching programs in which I recommend lab tests, educate you on what the results mean and the protocols used by doctors to fix the problems revealed. Or if you’re ready to jump in right away or can just afford one appointment at a time, you can set up an 1-hour consultation with me.

Adapted from episode 93 of The Perfect Stool podcast with your host, Lindsey Parsons, EdD, gut health coach.

Metabolic Endotoxemia

Today I’m going to be talking about a topic that may be unfamiliar but deeply connected with a lot of gut issues, which causes chronic inflammation and contributes to numerous other chronic health conditions common in the developed world and that’s metabolic endotoxemia.

What is metabolic endotoxemia?

So, you may have heard that bacteria are divided into two groups, gram-positive and gram-negative. Gram-negative bacteria are surrounded by an outer membrane containing something called lipopolysaccharide or LPS. Gram-positive bacteria lack an outer membrane. And when you stain them when looking under a microscope, they look different than gram-negative ones. So you may know that the two primary phyla of bacteria in the human gut are Firmicutes, which are gram positive, and Bacteroidetes, which are gram negative. Then the next two largest phyla are proteobacteria, which are gram-negative and actinobacteria, which are gram positive. Most of the major bacterial gut pathogens that you’ve heard of are gram negative proteobacteria, like salmonella, E coli (although most types of E coli are not pathogenic) and camphylobacter. Probably logically because they are facultative anaerobes, so they can live in the presence of oxygen, hence are easy to pass between people and make you sick.

So endotoxins are toxins in the bacterial cell wall of gram negative bacteria, which are released when the cell disintegrates upon death and also released in much smaller amounts when they’re alive. And this endotoxin is composed mainly of LPS, which activates the inflammatory response. So even small amounts of LPS in the blood from a bacterial infection can elicit an inflammatory response and trigger the release of inflammatory cytokines or chemical messengers, which leads to low-grade chronic inflammation.

So to put it all together, metabolic endotoxemia is a diet-induced 2-3 fold increase in plasma LPS levels. And if it happens after eating, it’s called post-prandial metabolic endotoxemia. So in other words, you eat a meal, and mostly dead bacterial body parts start escaping out of your gut and sparking off inflammation.

So as you may be guessing, something that goes hand and hand with metabolic endotoxemia is intestinal permeability, aka leaky gut. I did an entire episode on leaky gut, which is episode 24, from March of 2020, so you can listen to that to get the lowdown, but to summarize briefly, leaky gut can come from an overgrowth of the very proteobacteria that you don’t want escaping out of your gut, as in SIBO (small intestine bacterial overgrowth), from certain foods that contain lectins, added sugar, alcohol, nutrient deficiencies, chronic stress, smoking, toxin overload and dysbiosis. So there’s lots of ways you can end up with a leaky gut.

What conditions are associated with metabolic endotoxemia?

The consequences of metabolic endotoxemia are many. Symptoms and diseases associated with it include insulin resistance, obesity, type 2 diabetes, non-alcoholic fatty liver disease, chronic kidney disease, atherosclerosis, chronic constipation, low testosterone, chronic pain, cognitive decline, memory loss, appetite disorders, depression and anxiety. It can also promote autoimmunity and suppress the activity of your thyroid and cause autoimmune thyroid disease, which is Hashimoto’s thyroiditis, if you’re hypothyroid and Grave’s disease if you’re hyperthyroid. Endotoxemia also plays a role in Chronic Fatigue Syndrome and is associated with markers seen in early Parkinson’s disease patients.

So there are a number of causes beyond just a leaky gut for metabolic endotoxemia, and many of these causes also cause the gut to be leaky, so it’s all intermingled as you will see. The first is a high fat diet, but in studies but these were typically high junk food diets as well, so I don’t think we can assume that this applies to a carefully constructed ketogenic diet, for example. Fructose consumption is another cause, but this is referring to high fructose corn syrup and other fructose added to foods, and consumed in high quantities in the absence of fiber and nutrients found in fruit.  

SIBO is another cause of metabolic endotoxemia. It turns out that the primary bacteria in people with a positive hydrogen breath test, which is a diagnostic tool for SIBO, are Enterobacteriaceae, which are gram negative. The most common specific overgrown bacteria found in SIBO include Escherichia coli (gram negative), Enterococcus spp. (gram positive), Klebsiella pneumoniae (gram negative) and Proteus mirabilis (gram-negative). So the majority are gram negative and produce LPS, and just having an overabundance of those gram negative proteobacteria will itself cause leaky gut and then these are the bacteria with LPS.  

Chronic alcohol consumption can also be a cause. This happens because alcohol can increase pathogenic bacteria and decrease beneficial bacteria. Also, the metabolism of alcohol generates reactive oxygen species (also known as oxidative stress), which can damage gut cells and impair gut barrier function, allowing for the translocation of LPS into the bloodstream.

Periodontal disease is another possible cause, because in periodontal disease you have an overgrowth of harmful bacteria in the oral microbiome, which of course leads into the gut microbiome, and can cause dysbiosis and intestinal permeability and the leakage of LPS. And the primary pathogens in periodontal disease are also gram negative.

This one doesn’t seem fair, but aging itself can lead to metabolic endotoxemia, because it’s known that as we age our gut diversity decreases, which can then contribute to an imbalance in the gut microbiota and promote the growth of pathogenic bacteria that produce endotoxins. Aging is also associated with an increase in intestinal permeability, which may be due in part to age-related changes in gut physiology, such as decreased gut motility. In addition, aging is associated with a decline in organ function, including the liver and kidneys, which are important for detoxification and elimination of bacterial toxins. Impaired liver and kidney function can lead to an accumulation of bacterial toxins, contributing to metabolic endotoxemia.

And finally, smoking causes metabolic endotoxemia in the same way that alcohol use does, by creating dysbiosis and oxidative stress, which damage the gut barrier and create intestinal permeability, and by impairing liver function, which can lead to a decrease in the clearance of LPS from the bloodstream, contributing to metabolic endotoxemia.

How do I stop metabolic endotoxemia?

If you’re having lots of bloating, gas or acid reflux, the primary symptoms of SIBO, that’s the first thing to address. If you have recurrent SIBO, finding and addressing the root cause is important, and if it’s autoimmune in nature, using prokinetic supplements, and no matter what the root cause, spacing out your meals and periodically using antimicrobials and some type of SIBO diet like low FODMAPs or the Biphasic diet, is usually necessary. I did an entire episode on recurrent SIBO, episode 83, from October of 2022, so check that out for more information.

Then there are basic lifestyle interventions that can help if you suspect this is going on for you and you don’t have obvious SIBO symptoms. Reducing saturated fats, eating a Mediterranean diet rich in fruits, veggies, nuts and legumes, reducing Omega 6 fatty acids found in oils like soybean, corn, cottonseed, sunflower and peanut oils and processed foods that are high in them. Then increasing cod liver and fish oils will help. And unless you eat fatty fishes very regularly, you may want to think about incorporating a regular fish oil supplement in your regime. But look closely to make sure you’re getting plenty of EPA and DHA in your fish oil, because sometimes it’s 1000 mg of fish oil with only 300 mg of EPA and DHA, whereas the highest quality fish oil supplements, like the ProOmega 2000 you can find in my Fullscript Dispensary* has 1000 of EPA and DHA in one capsule. Then eating lots of probiotic foods or taking probiotics can be helpful. And incorporating prebiotic rich foods in your diet or supplementing with prebiotics like inulin and FOS (which is fructooligosaccrides, which won’t be great if you have recurrent SIBO). Inulin and FOS are found in chicory root, Jerusalem artichoke, onions, garlic, asparagus, jicama and bananas, among other things. Those two prebiotics help feed beneficial lactobacilli and bifidobacteria, which can crowd out the pathogenic bacteria.

Then avoiding sugar, excessive salt and surfactants found in processed foods, like polysorbate 80, mono and diglycerides, soy lecithin and carrageenan is also helpful. And then if you suspect your gut immune system isn’t working well, like you keep getting bouts of different gut pathogens, or you know based on your GI Map or other stool test results that your secretory IgA is low, you can use colostrum, or it’s more purified derivative without any dairy, serum bovine immunoglobulin powder (examples of this are MegaIgG 2000 by Microbiome Labs and Immuno gG SBI powder by Biotics Research, and IgGI Shield by Designs for Health, all available in my Fullscript Dispensary*) to protect yourself against pathogenic bacteria. And then nutrients to support secretory IgA production include omega 3 fatty acids, glutathione, glycine, glutamine, phosphatidylcholine, vitamin C and zinc. And then it’s also known that S boulardii probiotics bring up secretory IgA.

You can also support your mucin production, because the mucin layer is what protects the gut barrier, with amino acids like l-threonine, l-proline, l-cysteine and l-serine. Those are all found in Microbiome Labs Mega Mucosa, which is designed to support that mucin layer.

And then the most studied tool for helping with endoxemia are the spore-based probiotics. Microbiome Labs did a 30-day study with their spore-based probiotic, Megasporebiotic, which was published in the World Journal of Gastrointestinal Pathophysiology that showed that it reduced post-prandial (meaning after a meal) dietary endotoxemia by 42% and triglycerides by 24% (where as in the placebo group, there was a 36% rise in endotoxin and 5% decrease in triglycerides).

So I hope that was a helpful introduction to one of the likely drivers of chronic disease that has origins in your gut microbiome. And if you’re struggling with some type of chronic disease, chronic inflammation,  bloating, constipation, diarrhea, soft stool, acid reflux, etc. and want to get to the bottom of it, that’s what I help my clients with. You’re welcome to set up a free, 30-minute breakthrough session with me (Lindsey). We’ll talk about what you’ve been going through and I’ll tell you about my 3- and 5- appointment health coaching programs in which I recommend lab tests, educate you on what the results mean and the protocols used by doctors to fix the problems revealed. Or if you’re ready to jump in right away or can just afford one appointment at a time, you can set up an 1-hour consultation with me.

Adapted from episode 92 of The Perfect Stool podcast with Nita Jain and edited for readability.

Lindsey: 

Why don’t we start with how and when your health started going downhill?

Nita Jain: 

Yeah, so I struggled with health issues for a good portion of my life. I started developing things like Ehlers-Danlos type symptoms, which is a connective tissue disorder, that means that the vasculature ends up being a little bit weak because of insufficient collagen production. And so this is something that I started dealing with at a pretty young age in grade school. And then I also started developing symptoms of acid reflux disease, or GERD, and that was in high school and college. And I had also started dealing with something called chronic fatigue syndrome, which is now renamed myalgic encephalomyelitis after having swine flu as a teenager in high school as well. But apart from those things, I was managing and I wasn’t in the best of health, but I was getting by, but then everything changed for me after a course of fluoroquinolone antibiotics in 2015. This was during my last semester at university. I had to drop out because I developed seizures as well as peripheral neuropathy, fainting spells and all of these really disabling neurological symptoms. That meant that I didn’t have much bodily autonomy anymore. I didn’t have a lot of motor control. I was wheelchair bound or stuck in bed, and I just didn’t have any autonomy. I couldn’t drive a car anymore. I couldn’t cook for myself. It was hard to be upright. Around this time, the dysautonomia started to get really bad again. It was in remission for a while after the swine flu initial months, but then all of these old problems resurfaced, but they were much more severe than before.

Lindsey: 

Can you explain the dysautonomia a little bit?

Nita Jain: 

Absolutely. So dysautonomia is an umbrella term for a number of different conditions, like POTS is a subset of dysautonomia, postural Postural Orthostatic Tachycardia Syndrome. But basically, dysautonomia refers to conditions that result in vital instability. So you might deal with high or low blood pressure, a slow heartbeat like bradycardia, fast heartbeat like tachycardia, there’s often just an issue maintaining stable vital signs, and it seems that the sympathetic nervous system is not able to regulate the way it normally would be. And that can lead to a lot of secondary effects as well. It’s not just things like the vital signs being affected, but then you would often, of course, have secondary fatigue, you might have cardiac issues as a result; it can just lead to a cascade of downstream effects. But dysautonomia, depending on the subset, the root causes can be different. And for some patients like myself, the first line therapies are things like increasing salt intake. That’s usually something that doctors will say is like a first go to address this issue, but if that doesn’t work, they might move to medications like alpha blockers, for instance; it just depends on the patient.

Lindsey: 

And what what were your symptoms?

Nita Jain: 

For me it was that vital instability, as well as just crushing fatigue. I feel like I should differentiate between like being tired and being fatigued. Because being tired is something that you can recover from, I think it’s like what normal people feel at the end of a long workday, but you go to bed, you rest up, you’re better in the morning. Fatigue is a whole other level of tired. It’s the tired where your body does not have the energy to carry out the functions that it needs to. And it’s much more severe than simply like, oh, you’re just tired all the time. Because I think sometimes when chronically ill people try to talk about chronic fatigue. It sounds like it’s this very mild condition, when it’s much more severe than what it might seem at the surface.

Lindsey: 

Right. There was a documentary on chronic fatigue that someone sent me to watch. And some people are in bed, basically, all day long. They can drag themselves out of bed to do just only the very basics.

Nita Jain: 

Absolutely. Yeah, I think I know that documentary you’re referring to. I think it was called The Forgotten Plague with Ryan Pryor. And he actually recently released a book called The Long Haul, which is about long COVID. And there’s a lot of parallels between chronic fatigue syndrome and long COVID. And a lot of these other post-viral syndromes, like in the aftermath of the SARS and MERS epidemics, we also saw a lot of post-viral fatigue syndrome. So I think there are a lot of related conditions out there that produce these widespread constellations of symptoms. And I think energy metabolism is probably an underlying cause of many of them. So I think any insight that we can get into one of these conditions, it’ll probably also help elucidate the causes of the others.

Lindsey: 

Yeah. Did you have a somewhat of a medical background?

Nita Jain: 

Yes. So in in college as an undergrad, I was a pre-medical student and I had applied to medical school and everything, but then just having had that disabling adverse drug reaction during my last semester, I wasn’t able to go to medical school and I was just in a vegetative state for about six years or so. But medical school was what I was aiming for at the time. So I studied biochemistry, I worked in a cancer laboratory as an undergraduate research assistant. And that’s a little bit of my life sciences background.

Lindsey: 

Ah, okay. So back to back to your health story. . .

Nita Jain: 

Right. Yes. So in the aftermath of all those symptoms that I was experiencing post Cipro, which is the antibiotic class I was given, this is the same class of antibiotics as Levaquin and Avelox, in case people have heard those words as well. But what had happened was, I was under the impression that maybe because these antibiotics are so broad spectrum, maybe the fact that my gut microbiome has been wiped out, maybe that’s why I’m having all these really systemic side effects. And that’s what got me on the path towards pursuing FMT. And in the United States, FMT use is restricted to recurrent C. difficile colitis, that hasn’t responded to at least two courses of antibiotic treatment. So if I wanted to receive FMT, the only routes were through a clinical trial with like an IND license that the researcher would have to apply for, or through a private clinic. And I had applied to some of the clinical trials, but I wasn’t accepted into any of them. So then I started pursuing private clinics. And, of course, safety was something that was of top concern. So I wanted to make sure that the donors were thoroughly vetted, in terms of doing the necessary blood and stool testing, just to make sure that everything’s safe, and the chances of an adverse reaction are low. And so I did end up going to a satellite clinic, traveling abroad to receive this procedure.

Lindsey: 

Which one was that?

Nita Jain: 

So I went to a clinic that was the satellite branch of Taymount. So their main branch was in the UK, but they had a satellite branch in the Bahamas. So I was living in Georgia, it was just a couple hours flight to the Bahamas. And I received several different donors while I was there, but I noticed that I only responded positively to one of them. And so when I got back home, they had sent me home with some samples as well. And I had noticed that I that there were certain patterns as to the donor that I would respond positively to like, that particular donor was enriched in butyratep-roducing bacteria. They had a lot of the Clostridial clusters 14 and 16, which, again, a lot of butyrate producers. They were more enriched in things like the Faecalibacteria, Akkermansia, Blautia, Roseburia. And these are just some of the bacteria that are associated with robust metabolic health, good GI health, things like that. And I noticed that the donors that I didn’t respond to were not as enriched in these particular organisms. So unfortunately, I did have a reaction to one of the donors and I was in the hospital when I was back in the United States.

Lindsey: 

What was that reaction?

Nita Jain: 

So basically, after one of the donors that I received, I had really pronounced neurological symptoms. And it was just like my brain was on fire constantly. Now, I had a little bit of this before because of the peripheral neuropathy. But it was just jacked up to 100. And it was so severe that I wouldn’t sleep at all. And it turned out that I had something called Hyperammonemia, which is when your blood levels of ammonia are very high. And that was causing all sorts of different symptoms. It felt like I was being electrocuted, like my brain was just burning. I was severely depressed. And basically, I started taking l-ornithine orally in order to counteract this because it helps with the urea cycle and the elimination of of ammonia through the urine. But it was a really scary time because no one could really tell me what was going on. And it’s just like hell in your brain. And after that, I was a little bit more weary of FMT, I mean, I still thought that it had a lot of therapeutic potential, but I felt like I really need to avoid this ammonia problem happening again. And I continued to sequence of donors privately that I received from any clinic.

Lindsey: 

Okay, let me stop you for a sec. I want to back up a little bit because you didn’t discuss your inflammatory bowel disease at all. When did that come up?

Nita Jain: 

That came up about a year later. But that was all.

Lindsey: 

Okay, so this is after taking your first FMT?

Nita Jain: 

Yes. So at this, at this point, I do have pretty bad GI issues, but I’m not dealing with GI bleeding the way I did when I had IBD.

Lindsey: 

So what GI issues were you having prior to FMT?

Nita Jain: 

Just a lot of diarrhea; it was pretty frequent. And that was pretty consistent, but then I would have periods of time where I would go maybe 14 days without a bowel movement, which was very unhealthy as well. So it was kind of alternating, but I think it was mostly diarrhea predominant at that point in time. Then I also ended up getting FMT from other institutes in Europe. I had it shipped over on dry ice and had to go through customs and everything. Unfortunately, it was after that sample that I developed IBD, I started having GI bleeds. And it’s really hard to know why these things happen just because, well, actually, when I had sequenced that particular donor, they had a pretty high proportion of Clostridioides difficile, which was really surprising because it came from a research institute that’s really reputable. So I don’t know, I think maybe after the C diff, maybe that triggered IBD. In a way, just having carried it, I’m not particularly sure because even after C difficile got down to normal levels, I would still have these flares where I would bleed. And the only thing that would fix it is FMT from a healthy donor, like one I responded positively to, because, again, there’s so much variability. So it feels like to me, at least, when we’re sequencing these donors, or testing donors to figure out who is a viable candidate to donate material, I think that the current qualifications that we’re using are not really sufficient. Just just because even if you’re ruling out things like C difficile, things like Salmonella, Shigella, Campylobacter, some of the more common GI pathogens, and even if the bloodwork is clean, that doesn’t necessarily mean that the person has the protective bacteria to give to somebody who’s sick. So I feel like testing for that is equally important, not just the absence of pathogens, but also the presence of protective bacteria. And so yeah, I think that might make the process a little bit safer for people who are seeking out this therapy. And I mean, I think it’s kind of unfortunate, because I do think that it has a lot of potential as a therapy. But I just think that it’s not practiced the way it needs to be to be safe for the maximum number of patients.

Lindsey: 

Yeah, so again, backing up, how did you have time to sequence these microbiomes before taking the samples? Did you just like get a frozen sample, run the sequencing, and then hold onto it until you were ready to take it?

Nita Jain: 

Yeah, basically, after I started reacting negatively to some of the Taymount donors, that’s when I started deciding that, yeah, I’m going to sequence them before taking the sample, just in case there’s anything alarming in them. And at the time, Ubiome was still was still running (since, they had to declare bankruptcy because of some billing issues with one of their Smart Gut tests). But at the time, I was just getting everything sequenced through 16S ribosomal RNA sequencing just to have some idea as to what’s in the sample. So I’m not like totally shooting in the dark. But after that, after those initial adverse reactions, I decided that I should probably sequence them before taking them and wait for those results to come back.

Lindsey: 

I see. Okay. And when you saw a donor that had high levels of C. difficile, why would you go forward with that sample?

Nita Jain: 

Yeah, absolutely. I was not aware of that at the time. And at the at the time, my condition was pretty severe. So I felt like okay, let me go ahead and take the sample while I’m waiting for the results to come back. Definitely being in a vegetative state will make you pretty desperate. So you know, I know in hindsight, it’s not intelligent to do that at all. But I also empathize with people who are open to experimenting with potentially dangerous things because of the desperation, because your quality of life is so bad, it is just like, well, I can’t get that much worse might as well try it. And of course, this is not something that should be done at all. But I think that’s just the psyche of people who are very chronically ill.

Lindsey: 

Of course. Yeah. So when you said you responded well, to certain donors, when you did respond, well, what kind of positive changes did you see?

Nita Jain: 

So I saw a lot of systemic benefits when I responded, Well, it was like the brain fog would be lifted. The GI stuff would calm down, I could breathe easier in a lot of ways. It was just like things were just lighter. I felt more like a regular person would. I started having more mobility, more autonomy, more motor control, just able to do regular things, again, able to engage in chores and cooking and slowly but surely pick up driving again. But it’s also very strange acclimating, like re-acclimating to civilian life, after just having been in hospitals for six years, because you don’t see anyone or at least I didn’t, in my condition. I didn’t see anyone outside of the hospital and my immediate family for that stretch of time. And so this was before the pandemic even started. So I was just already accustomed to this degree of social isolation before COVID even came around. And it’s really difficult to re-acclimate. And it wasn’t as though I wasn’t still having symptoms. Because the thing is, it wasn’t just FMT that made me better because even when I received FMT from a from a donor that I responded well to, I would relapse. And I noticed that the one thing that made it stick for me in the long term was to also adopt an autoimmune protocol diet, and FMT, in conjunction. So if I did those at the same time, then I was more likely to see that long-term remission.

Lindsey: 

This is like an autoimmune paleo?

Nita Jain: 

Yes, exactly. And the other thing that helped me was time-restricted feeding and not eating after dark, especially just because of the hyperpermeability that can happen if we eat after dark. Yeah, one of the mechanisms by which that happens is the fact that melatonin blunts insulin secretion a little bit. So glucose transport, after sundown, is more likely to lead to leaky gut symptoms, because of, you know, the LG the way that it’s transported after dark. So basically, for me, it was the combination of FMT, an anti-inflammatory autoimmune protocol diet, and then using this time-restricted feeding to really drive down inflammation; those three in conjunction really started moving the needle for me.

Lindsey: 

Okay. And so then I understand you’ve gotten FTM samples from other places as well?

Nita Jain: 

Yes, I also received samples from a local clinic called RDS infusions. That was in Florida, I believe, at the time, I think when I pursued it in 2017 or so they had three donors. I’m not sure what the case is now. But then I also received FMT from a place called Microbiomes LLC in Portland, Oregon, I believe.

Lindsey: 

And were these just individuals selling their stool? Because my impression was RDS was sort of like that. But I guess you said they had other donors too?

Nita Jain: 

RDS was run by a gastroenterologist at the time, but I do believe that one of their donors ended up selling his samples of his own accord, but I had received it from the gastroenterologist when he was a donor at that clinic. And for Microbiomes LLC, I had gone through Purety Clinic in California for that. And the samples came from Microbiomes LLC in Oregon, and they shipped it on dry ice as well. But those are all the different places that I pursued. And I even, at one point, tried to sequence my cousin’s sister, to see if she was a viable candidate, but, I’ve received lots and lots of donors. And yeah, there have been definite patterns as to who I will respond better to, but I think the more stringent we can make the screening process, the better, as far as safety and efficacy goes.

Lindsey: 

Yeah, I understand that you you reached out to a lot of people that you knew to try and find donors. Can you tell me a little bit about that process?

Nita Jain: 

Yeah, that’s true. So after I responded negatively to FMT, I was really desperate to get a sample to counteract those effects, and was just like, I just need to get a better donor, and then I can reset, it’ll be fine. And so I reached out to maybe 500 people or so among my contacts, family, friends, school colleagues, former classmates, anyone who I’d come into contact with who might be able to help me saying like, “Hey, would you mind filling out this donor questionnaire? Because I’m really sick and having a healthy stool sample from somebody could really help.” But it’s a very bizarre question to ask because I think there is more disgust around the idea of stool versus being a blood donor or something like that. I think people are a little frightened by it, to some extent. I think a lot of people think that you’re maybe just like mentally sick or something to be asking this. Because if you don’t have knowledge about the microbiome, it might seem like a very odd request. It’s like, oh, she’s just like gone off the deep end or something like that. But I did reach out to a lot of people. And so unfortunately, almost everyone I knew had some sort of, even among people who were willing to do it, most everyone had some sort of pre existing condition that would disqualify them, or they were on some sort of prescription medication that wouldn’t make it perfectly safe. So it is very much a needle in a haystack endeavor in a lot of ways. So I think there is a way to make an artificial substitute that would go a long ways towards helping patients as well.

Lindsey: 

Yeah, I actually am taking one of the, well, there’s a few products that have anaerobic bacteria now from Pendulum*: Glucose Control, and their Akkermansia, and now GI Repair, which is Clodridim butyricum (since renamed “Butyricum”) (also available in my Fullscript Dispensary*), which I started taking, and I’m actually really impressed with the results.

Nita Jain: 

Yeah, definitely. Because it is so hard to culture so many of these anaerobes, since they’re dying in the presence of oxygen, essentially. But yeah, I think that was one of the reasons that having that Akkermansia probiotic over the counter was such a big milestone, because it just shows us that it is possible to culture anaerobes and administer them in an oral form, which I think is huge.

Lindsey: 

Have you tried any of those?

Nita Jain: 

Yeah, yeah, I’ve tried pretty much everything that’s on the market. In addition to the two that you mentioned, I’ve also tried some of the bacillus types of soil-based. . .

Lindsey: 

Spore-based. . .

Nita Jain: 

Yeah, exactly. The spore-forming soil based organisms, a lot of those as well. Yeah, those are really good at colonizing in the long term I’ve seen because you take it once, and you can still see it in stool samples months later down the line. And I think nowadays, they’re even there. They’re also doing Bifidobacterium infantis for children or newborns who are lacking that bacteria, because a lot of moms don’t carry it. So you can’t pass it on to your children. But that also seems to colonize pretty well, surprisingly.

Lindsey: 

Yeah, that’s the one I give to all my pregnant friends.

Nita Jain: 

Awesome. Very cool.

Lindsey: 

Yeah. So did any of those probiotics have a positive impact on you?

Nita Jain: 

They didn’t move the needle for me specifically. But I do think that if people maybe have a very specific condition, it has the potential to help. I think, just for me, my condition was just to the point where so many of the species were just extinct, and they just needed to be replaced, that I wasn’t seeing much benefit from just introducing a few microorganisms here or there. I think I just needed a more comprehensive restoration protocol. But I do think that they can help in some instances, yeah, sure.

Lindsey: 

How long was your course of antibiotics?

Nita Jain: 

It was only a week. And it was just basically twice a day, I think it was maybe 800 milligrams twice a day for a week. And unfortunately for me, I didn’t actually have a bacterial infection. So it was all collateral damage. They had given it to me just in case of infection. And the reason it happened was because at the time, when I was in college, I dealt with recurrent iron deficiency anemia. And after receiving one of the iron infusions, which is through an intraveous line, I developed a really high 106 degree fever. And so I called my hematologist, they were just like, I don’t think it’s related. Just follow up with your PCP about it. So then I went to see primary care and primary care was like, okay, we’ll give you these antibiotics, just in case there’s an infection going on. So I took the antibiotics, when my test results came back, turned out no infection, but they were just like, just finish the course of antibiotics. And I was like, okay, I’ll do that. But, yeah, I think I think we maybe need to be more judicious about our antibiotic usage. Because if there isn’t a clear sign of infection, it really does have the potential to do more harm than good. And I think that’s something that really needs to be evaluated carefully on a case by case basis with the clinician, with the patient, like, what are the risk factors and are there any safer alternatives, especially when it comes to the fluoroquinolones class of antibiotics. Because it is a class of antibiotics that has so many black box labels for really disabling side effects like aortic aneurysm, tendon rupture, it even has a blackbox warning for psychosis, suicidal ideation and even completed suicide. And they added that warning in 2016, which is after I was prescribed them a year earlier. And you know, even Nature, the world’s premier scientific journal, had done a feature on Fluoroquinolone antibiotics and their disabling side effects in 2016. But I think the prevailing consensus in the medical community hasn’t changed much, they still very much say things like we prescribe like water, we prescribe it like candy. It’s perfectly safe. And there are thousands of patients whose lives have been forever altered by this class of antibiotics.

Lindsey: 

So yeah, I think that one year, I had two 10-day courses of Cipro for urinary tract infections, and three days is actually the standard of care. I don’t know why the doctor prescribed it for so long for me.

Nita Jain: 

Yes, yeah. Especially especially when it comes to like uncomplicated urinary tract infection, uncomplicated bronchitis, I think we can safely go with safer options.

Lindsey: 

Yeah, well, I’m allergic to sulfa. So I think the first time Bactrim maybe is the one they usually give, but I was allergic to that. So that may be why they went to Cipro for me. Yeah. So backing up again, what made you think of FMT as a possible treatment? Like where had you even heard of it?

Nita Jain: 

So I had a tangential awareness of FMT, just being a biochemistry student, I think in 2012, that’s when it first got on my radar. And when I first heard the term, I was like, What is this? It sounded very weird, fecal transplant. Like, what does this mean? So I started reading up about it, how it helped people with C. difficile infection. But it’s weird. Even though I had GI issues at the time, I didn’t make the connection that maybe this is something that I could pursue, because at the time, most of the literature around it was just in relation to C. diff. So I thought, okay, that’s just something that helps that isolated case. But then I did start following the microbiome research. And in 2013-2014, I was seeing more and more evidence about things like the hygiene hypothesis; how being too clean can maybe negatively impact our health, because we’re losing these old friends that help train our immune system and help us develop immune tolerance, help us differentiate between self and non self. And so I think as the years went on, I was getting progressively more convinced that this is really important. And I myself was a C section, baby. So I was also thinking that, well, maybe some of the things that I’m experiencing are due to the fact that I wasn’t a vaginal birth and didn’t obtain my mom’s microbes by passing through the vaginal canal. Maybe that was something and also the fact that I didn’t breastfeed for very long at all, just a few months. And that’s also something that helps to facilitate good gut health because mom’s breast milk contains HMOs, which are human milk oligosaccharides, these small sugars that feed the bifidobacteria in the infant gut, and that really helps to train the immune system. So I was thinking that maybe this combination of things like antibiotic exposure, the C, Section delivery and lack of breastfeeding was maybe contributing to my health issues, even before the Cipro fiasco happened a little bit later.  When I did receive Cipro, I had read in the New York Times about this system restore, and it was about FMT. But they basically talked about FMT as system restore and like, we all know that if your computer gets a virus or a bug, you can essentially use System Restore to return to a previous point in time, and that can counteract any sort of malware that you’re experiencing on your machine. And FMT was likened to that. It was basically saying, like, we bank our stool when we’re healthy. So that if we ever get sick, we can administer that sample to ourselves –  autologous FMT – use our own sample. And that will be like restoring our health to that time point. And having read that, I was just like, I think this is going to be the solution. For me, this is the thing for me to pursue, because I was just getting shuffled from specialist to specialist with no real resolution, I was very convinced that the gut microbiome was going to be the thing to get me back on track. And I was kind of upset that I hadn’t saved my stool beforehand. Like before the antibiotics I was just like, if only I had considered this earlier, then I could have just done autologous FMT with my own sample when I was healthier, because it’s so hard to find a good donor, a donor that you respond to, it is very much a needle in a haystack endeavor for a lot of patients. So I think, yeah, that’s another thing that might be beneficial, to have stool banking options for patients if they are going to need to take antibiotics. But again, it’s also a question of education. A lot of us don’t know about this until we get ill. And then it’s too late.

Lindsey: 

Right, you need the stool put away before you have the thing that requires the antibiotics.

Nita Jain: 

Exactly.

Lindsey: 

Yeah. That’s the dilemma. And so what period of time did you go from being totally bed bound to being up and around and again, again, maybe not in perfect health, but just, you know, functional?

Nita Jain: 

Yeah, so 2019 was the first year that I started seeing a little bit of that return to health after finally finding a donor that I did respond well to. It wasn’t perfect, but it was good enough to get me back 70% of my functions. I still had chronic cystitis pain. And this is something that I developed after hospitalization after a Taymount sample. So that’s something that I have still been dealing with since 2015. But basically everything else has gone into remission as a result of the strides that I’ve taken.

Can you explain what the cystitis is?

Yeah, absolutely. So basically, chronic cystitis, there is a lot of overlap with chronic UTIs. And I think the unfortunate thing is, most of the time, doctors only consider a UTI as being either acute or recurrent. There is not a lot of medical education around chronic UTI yet, but a lot of patients do experience that and I am one of them. Basically, when you do urine culture, it’s really biased for E coli detection. And that’s pretty typical because the vast majority of UTIs in females are caused by E. Coli. But there are also a lot of other organisms that can do it, like Klebsiella pseudomonas, Enterococcus at times can cause UTIs. And the thing is, because the culture process is biased to E. coli, sometimes even if a patient does have an infection, the culture can still come back negative. And you might need something like urine PCR to find those microorganisms. And urine itself, the bladder itself does have a microbiome. It’s not as though urine is completely sterile. But you do want to beware if there’s zero pathogens there. So unfortunately, urine PCR is not widely adopted right now. So sometimes you kind of have to find a urologist or somebody who’s willing to do that more in-depth testing. But for me, it seems that sometimes when UTIs have been going on for long enough, there might be something called biofilm formation, where it’s just these, these communities of microorganisms that form this extracellular matrix that protects them from antibiotics. So one of the problems is that bacteria that are forming a biofilm, it’s very hard for antibiotics to penetrate that a lot of the time. So sometimes, you might have to be on antibiotics long term or sometimes patients have to receive intravesicle antibiotics. So antibiotics directly into the bladder, because the oral stuff, it’s just not concentrated enough by the time it reaches the bladder to have enough of an effect to break up the biofilm and clear the infection. But yeah, this is just something that there’s just not a lot of good information on right now. And I think patients who are dealing with it, they’re kind of left to fend for themselves finding a specialist or finding a doctor who is well versed in the condition and the possible treatment methods. And that’s still a journey that I’m on to fix that condition. But at least for me, the dysautonomia, the IBD, the neuropathy, all the neurological stuff improved incredibly to the point where I don’t really deal with that on a day to day basis anymore. Thanks to FMT and the anti inflammatory diet and time restricted feeding.

Lindsey: 

And what about your psoriasis?

Nita Jain: 

Yeah, so I developed some eczema and psoriasis in the aftermath of Cipro as well. And the gut-skin axis is something that’s being more widely elucidated now, and there’s even something called topical skin microbiota transplants that some researchers are using to see if it can help with things like psoriasis and eczema, or atopic dermatitis, as it’s sometimes called. But yeah, for me, now, the skin conditions, they get bad in the winter months, but otherwise, the rest of the year, I’m in remission. But sometimes I will still have that dryness, that peeling, and just that tearing of the skin, the epidermis layer in the winter months, but the rest of the year, it’s in remission. So that is something that still crops up around that time of year. But otherwise, that’s been okay as well.

Lindsey: 

I know there were some products on the market a couple of years ago, I’m not sure if they still are that were like lotions and soaps that had microbes in them. Have you tried any of those?

Nita Jain: 

I have tried a few of them. Yeah, I think I tried things like Mother Dirt and AObiome. And then I think, there are some, some skin products that use terpenes, and other sorts of other sorts of compounds that are supposed to help fortify the skin barrier. And I’ve definitely tried and experimented with a lot. I haven’t found a way to prevent the recurrence in the winter yet. But there are things that have helped me, like I started using Weleda Skin Food; that helps me a little bit. And then I think a lot of it’s also just internal nourishment, like keeping my omega intake high and just making sure that my vitamin D intake stays high. There’s a lot of inverse correlations between skin, autoimmune conditions and your vitamin D levels. So those do make somewhat of a difference in terms of severity. But it does crop up a little bit in the winter nonetheless.

Lindsey: 

And tell me about the Frontiers article you wrote?

Nita Jain: 

Sure. So in 2019, that was the first year that I was doing better. In December of that year, I was part of a research organization, it was called Open Humans. And basically this is a community of researchers as well as citizen scientists who get together and share and have n of 1 experimentation results. And the benefit of n of 1 is that while you don’t have the rigor and the generalizability of a randomized controlled trial, you do get to illustrate that certain variation exists in the human population. So it’s beneficial from that regard, just to show that this variation is possible to observe, just because all of us are a little bit unique. But long story short, one of the people who was part of the organization, Eric Daza, was creating this special issue in Frontiers that was about patient-led research and using data and so he asked if I wanted to submit I said, “Okay.” And so I wrote this short mini review on personalized approaches to microbiome research. And it was all about how the more precise we are with our approach, and really like tapping into precision medicine, personalized medicine, the better off microbiome science will be. And I had submitted the manuscript in January of 2020. And I got feedback from a couple of couple of reviewers in the fields. And I just went through that peer review process, they had just minimal notes for me. I made some small edits, sent it back. And it was published in April of 2020. And it’s ironic by the time that happened, I had already contracted COVID. And then the whole of 2020, I was unfortunately dealing with hospitalizations because of lung scarring, trouble breathing, really severe tachycardia that felt like heart attacks whenever it happened. And then I also developed a kidney infection after hospitalization. And then I also had GI surgery that year. So it was, it was a pretty awful year. But it got off to a good start with the publication. But it was pretty much downhill after that.

And what was the GI surgery for?

So they had diagnosed me with something called superior mesenteric artery syndrome (SMAS), which basically means that you have a blockage that’s preventing the normal passage of food from your stomach down into your small intestine. And they say that the blockage is at the level of the duodenum, where the superior mesenteric artery is sitting on top of it and cutting off circulation. However, all of my functional imaging tests were normal. So when I did like the barium X ray series, the barium was passing through my system as normal. I also did gastric emptying tests, where you consume the radioactive eggs, and they they track the isotope as it moves through your body. That was also normal. So even though they were seeing suggestions of a structural abnormality on an MRI, just in terms of the dilation of the stomach, and just the fact that there’s narrowing of the artery in the space, that does not mean that I’m having functional consequences as a result of it. But unfortunately, because of confirmation biases, and other psychological factors at play, my doctors stuck to that diagnosis, and they were like, we’re going to have to do surgery or you’re going to die. And they gave me two options, either one, get a feeding tube, or two, get this much more invasive surgery where they would remove my gallbladder and just connect my stomach to my small intestine, bypass my duodenum completely. I opted for the less severe option, because I again was very skeptical that this is what’s wrong with me because of my normal functioning tests. And, you know, anytime I would press my doctors for this, I would say things like, I really think this is IBD; I have blood in my stool. I don’t think this is the right diagnosis. Because, you know, with with SMAS you have pressure, you have uncomfortability, but I was just getting the searing burning pain, where it’s just like, I’m very inflamed. And I was losing weight like crazy, which is, again, something you can see with SMAS. But I just felt like it wasn’t in line with everything else that was going on, like the blood in the stool, the elevated calprotectin that’s highly diagnostic of IBD, not SMAS, right. So but again, my doctors brushed me off when I addressed these, when I voiced these concerns.

Lindsey: 

And was your burning near your duodenum?

Nita Jain: 

It was not! That was another thing; the location was completely off. I was just like, the burning sensation that I’m having is south of where it should be. If it was SMAS – because it’s not at all in the area where you’re saying that I have a problem. But nonetheless, I got hospitalized just because I was barely able to eat. I was in so much pain. And unfortunately, they had me on an all liquid diet for 17 days in a row. After the surgery, I wasn’t allowed to eat for a while I think maybe there was something. . .

Lindsey: 

So I’m sorry, you opted for which version of the surgery, what did they do in the surgery?

Nita Jain: 

So I opted for the less invasive procedure, which is a gastrojejunostomy. And basically what they do is they clean out they basically go in into your stomach, feed a tube down through your duodenum all the way down into your jejunum which is the first part of your small intestine. And that is supposed to bypass the area of obstruction so that I can be fed. So I had this feeding tube. It didn’t help me at all. My pain actually got worse because the area where the surgery is, that tissue is getting very inflamed. And the other thing is, it would sometimes get infected because it is essentially an open orifice when you have this feeding tube; it’s exposed to the outside elements and everything. So despite the fact that I would sanitize it often, the chance of infection is pretty high with these sorts of things. And you do have to be really careful about it. But I was not really gaining a lot of weight doing this, which is what they had wanted to see. I was more inflamed than before, with the cardiac issues that I was already having, with the cystitis that I was already having. It was really hard to use the bathroom, just with a tube and managing the feedings around the clock was nuts. The other thing, when you have a feeding tube, they expect you to feed around the clock. And that’s not really good from a circadian standpoint to always have food in your intestine, because then you’re not having the autophagy that normally would have happened at night; the cellular repair isn’t happening. So there’s just a lot of things that you don’t know upfront about having a feeding tube.

Lindsey: 

Are you eating regular food? Or are you just using like solutions of, you know . . .

Nita Jain: 

Yeah, so they basically had me feed exclusively through the tube. And I really wanted to have pureed food by mouth because, in my mind, I’m like, I can eat by mouth. I should be eating by mouth if I can.

Lindsey: 

So wait, where is the tube? Exactly? Where does it start?

Nita Jain: 

Yeah. So the tube, it’s going through the stomach, and it’s just passed down into the small intestine.

Lindsey: 

Oh, okay. I was picturing it coming through your mouth. Okay, so it’s entering your body midway?

Nita Jain: 

Yeah, exactly. Basically the entry point was right below my left rib and I still have a lot of pain from the surgery scars and the incision place because it doesn’t fully go back to normal post surgery. And sometimes, it is one of those things that’ll flare up in terms of pain when it’s really humid outside, stuff like that. But the other thing was, it was so hard to breathe for a long time, because of the fact that it’s so close to my lungs, the incision site, and just I just had so much inflammation there as well, which was not pleasant. But long story short, after about three months, I was begging my GI doctor, please let me remove this tube, nothing good is happening, I’m just in pain. And I’m just suffering and I’m not gaining any weight from it, I think I just want to go back to eating pureed food, because at least then I don’t have to deal with this anymore. Because like the tube’s getting infected, I can’t sleep at all because of how much pain it causes me. I’m just completely miserable, and it’s just debilitating. Unfortunately around the holidays and stuff, it was that time where it would be hard to get me in to have the tube removed. So I asked if I can safely remove it at home. He said, okay, it’s probably stabilized having been 8 to 12 weeks, because you don’t want to remove it before that time period, or it can be a little bit dangerous. So I did end up removing it at home by myself and just not eating anything for I think it was like six hours afterwards just to be on the safe side. So kind of letting that initial peeling process start. And then slowly reintroducing liquids and then purified food and then working my way back up to solid food. But again, it was FMT that I pursued to get that inflammation under control, because the surgery didn’t do anything for me. It worsened my inflammation. And I think the IBD was the more likely culprit, otherwise FMT would not have helped me. It was something functional, it was not something structural, otherwise, I would have not responded to FMT treatment.

Lindsey: 

And how thick was this feeding tube that you could just pull this out of your body and leave a hole behind?

Nita Jain: 

Yeah, so I think the catheter that they insert the tube is maybe 18 FR, or so. Maybe 20?

Lindsey: 

What’s that roughly in inches?

Nita Jain: 

Yeah, so it’s less than an inch, it’s definitely less than an inch in diameter, maybe half an inch in diameter.

Lindsey: 

And you just pulled this out of your stomach yourself, or your intestines yourself and just left the hole there?

Nita Jain: 

No, it’s not like that. Basically, what happens is, it’s held in place by a balloon. And so the balloon is filled with water. So basically, what you do is you take the syringe, and you try to drain as much of that water out as possible from the balloon because that’s what’s holding it against the abdominal wall. And once you do that, then you can start to pull, but it did kind of get stuck near the end. And I was sort of panicking for a while because I’m just like, oh no, I’m gonna have to go to the hospital if I can’t do this myself. But yeah, it just required a little bit of persuasion. Just because the balloon, even when it’s deflated, it does have a certain thickness to it. So you just have to alter your breathing pattern while pulling to get it out but then yeah, I basically put the gauze over it and cleaned the area first of course thoroughly and just waited for my body to start patching itself up.

Lindsey: 

Wow. Interesting. I’ve can’t even begin to picture this. Okay, so how are you doing now? I mean, like what percentage are you back to health? You look like you’re in good health to me but I know looks can be deceiving.

Nita Jain: 

Yeah, my main concern these days is the chronic cystitis pain. So that’s the most disabling part of my life these days. It’s just because I still have that burning and urgency 24/7 since it first began back in 2015. And I still just have to use the bathroom multiple times a day. It does interfere with sleep because of the pain. There are some things that help in terms of avoiding anything that’s very irritating to the bladder. But that only gets me so far, because I still have that pain regardless. So that is something I’m still trying to troubleshoot as far as dealing with all the biofilms in the bladder that I have, and hoping that I can have remission and some sense of normalcy, hopefully.

Lindsey: 

Do biofilm busting herbals help at all, or is that pretty much only hitting the digestive system?

Nita Jain: 

Yeah, most of them don’t make it all the way to the bladder to really have an effect. A lot of the time, the stomach acid will degrade those enzymes before they can really have much of an effect. But I have tried pretty much everything under the sun in terms of herbal antimicrobials, in terms of biofilm busters, like Interfase, stuff like that. But yeah, I haven’t been able to appreciably move the needle. That being said, it is a lot more under control than it was when it first began. When it first began, the pain was so severe that I would go six or seven nights in a row without sleeping.

Lindsey: 

That’s horrible. I wouldn’t wish it on anyone.

Nita Jain: 

It was just horrible. It was one of those things where I had white blood cells in my urine, but the cultures were coming back negative. So they were just like, yeah, sorry, we can’t treat you sort of thing.

Lindsey: 

Yeah, yeah. No, I know someone who’s got the same problem. And what about oxalates? Did you go down that path at all?

Nita Jain: 

Yeah, I did try a low oxalate diet to see if that was something that was irritating my bladder, just removing leafy greens like kale and things like that. But I didn’t see any benefit from doing that. So I was like, let me just put them back into my diet because it does provide good fiber and good nutrients.

Lindsey: 

Yeah. So did you remove other things like berries and nuts and all the oxalate foods?

Nita Jain: 

Yeah, definitely. For sure.

Lindsey: 

Okay. Yeah. Just curious. Well, I hope you get to the bottom of that. So but your IBD symptoms are resolved? And the digestive system is working well now?

Nita Jain: 

Yes, I believe so. So I’m thankful for that, at least. And I’m just hoping with this last piece of the puzzle resolved, I can finally feel a little bit more whole.

Lindsey: 

Yeah, I’m sure. And one more question related to the FMT’s that I’m curious about. You mentioned, I responded to a certain donor, or I didn’t respond to another donor. So when you’re getting these samples, are you’re getting like, okay, here are 15 frozen samples of donor x and 15 of donor y, and you get like 45 total? With what frequency were you taking them? How did that all work? And could you request a certain donor like, oh, I’d like more of this guy?

Nita Jain: 

Yeah, actually, after I responded to one donor at Taymount, I really did want to request that donor again, but they said that they don’t operate that way. So I think a lot of it’s dependent on the clinic itself. And there are also some clinics that prefer this multi donor approach. They say that, if any one donor doesn’t work out, then you can overwrite it with other donors. But I sort of advocate for a more precision approach versus this, I don’t know, Motley Crue approach where you’re just throwing random samples at the person because they have this idea that whatever is good is going to stick. But that’s not how it works. I mean, pathogens can easily colonize the GI tract. And I think it’s better to just be very intentional with what we’re administering in terms of making sure that these donors are safe, and that they’re enriched and productive bacteria; that they’re devoid of any pathogenic bacteria. I think we just need to be more deliberate in the process in how we go about it. But when it comes to frequency, a lot of this depends on the condition that you’re trying to address as well. At least for me, once I started doing it in conjunction with an autoimmune protocol, the benefits would last until I did something that would really skew the balance, like take antibiotics for the cystitis or something like that.

Lindsey: 

The benefits from one donor?

Nita Jain: 

Yes. But sometimes, with certain conditions, you might have to do it weekly for a number of months. Like I’ve definitely seen that addressing ulcerative colitis sometimes benefits from a more long term approach versus things like IBS, for instance.

Lindsey: 

Are you doing it weekly?

Nita Jain: 

Yeah, so I currently just do it if anything happens that throws me off, that throws me into a flare, and then I’ll administer it, and I’m good until I’m not basically.

Lindsey: 

Autologous or are you getting samples still from somewhere?

Nita Jain: 

I’m still getting samples. Actually, what I do is I try to make the samples last as long as possible, like a lot of the time, they’ll give you 60 CC’s. But I mean, the fact that the stool is just so densely concentrated with the bacteria, especially because most of these clinics, they filter out the food or any of the other debris that might be in the sample. So it’s basically just like microbes suspended in a saline solution of sorts, maybe some cryoprotectant, a little bit of glycerin to preserve it so that when you freeze it, they’re not damaged (the bacterial cells). But yeah, at least for me, I just make a little go a really long way. So a 60 cc sample, I can easily take it 10 or 20 times just because it doesn’t take a lot, I feel.

Lindsey: 

And are you doing it in capsule format or enema format?

Nita Jain: 

I’ve been doing it with enema format, and I basically use a bit of a longer rectal catheter. I know that some doctors have this idea that unless you’re doing it by a colonoscopy, where it’s being delivered, at least to the sigmoid colon that it’s not going to make a difference. But I haven’t personally noticed anything like that. I noticed that even with a rectal catheter, even with an animal bottle, I still receive the benefit from FMT, even though I’m not being sedated, it’s not getting as far up as it needs to. But nonetheless, I mean, it’s a live product. So the bacteria they know how to colonize.

Lindsey: 

Yeah. So how long and wide is the rectal catheter?

Nita Jain: 

So I use an 18 FR rectal catheter, and it has two eyes. So basically, it has a rounded tip. So that makes for pretty easy, painless insertion, and then it has two eyes on either side. And that’s how the material is delivered into the colon when you push the syringe through.

Lindsey: 

Okay, so with with the cystitis, I imagine you must have to take antibiotics frequently.

Nita Jain: 

At this point, no, I’m currently not on antibiotics right now, just because I have not really seen much benefit from it in the long term yet. I’m still in the process of doing more targeted testing. Because I think for for me, I’ve been on almost every antibiotic class to address this cystitis. But I think with biofilms it’s just one of those things where there’s a lot of layers, there’s a lot of bacteria. And sometimes, once you treat one round, you’ll notice that there’s different uropathogens than the previous time, then you’re targeting those. And sometimes it feels like a whack a mole type of situation, but I’m trying to be very targeted about it rather than taking antibiotics.

Lindsey: 

So you’re not constantly having to do it. So you’ve still got remaining. And the most recent samples that you feel are good for you came from where?

Nita Jain: 

So the donors that I’m using right now came from Microbiomes LLC. And I’ve had mixed results with their donors as well. But I’m just using the one that I responded well to. And the only problem is, I’m not sure if I can get this donor again. So I’ve kind of been wanting . . .

Lindsey: 

But you have an idea on the donor that you could say I’d like this donor, if possible.

Nita Jain: 

Yeah, if possible. But then, when you’re dealing with human material, it’s always a question of availability. Even if you get it once, can you get it again? And right, it would just be great if we could make something synthetic.

Lindsey: 

Yeah. And so if somebody were were wanting to try and pursue FMT, they can reach out to this Purety Clinic to do it, or Microbiomes LLC directly?

Nita Jain: 

I was not able to get in touch with Microbiomes LLC directly. So I went through Purety Clinic personally, but things are changing all the time.

Lindsey: 

And is that near you? Or did you go in person?

Nita Jain: 

I did not go in person. I’m in Georgia and Purety Clinic was in California. But I remember during the pandemic, a lot of clinics had ceased operations, just for concerns about transmission risks through stool even. So, we were waiting quite some time before operations could resume, before I could get samples again, just so much is dependent on the circumstances. Well, it would be great if it wasn’t something that relied on humans to provide the material for.

Lindsey: 

Yeah. Okay, well, we’ve gotten a little bit over time, but there were a lot of interesting nuances to your story. Any final parting words for anybody who’s dealing with chronic health issues and is considering FMT?

Nita Jain: 

I think just prioritize health and safety, safety and efficacy as much as possible. And regardless of who you’re going with in terms of a clinic or your doctor’s office, a hospital, ask if you can have the the testing results for the donor. Even if they don’t give you the exact results of the donor specifically, ask them what they’re checking for, in terms of what, like make sure that they’re at least doing the bare minimum in terms of checking for the patient’s metabolic health, CBC, CMP, making sure that they don’t have Hep A, Hep B, Hep C, just making sure that you’re covering as many bases as possible. Most of them will also be doing culture, like stool ova and parasites, things like that. But if possible, ask them if they’re also checking to see if their donors have protective bacteria in addition to not having the pathogens. And do your research as much as you can, then feel free to reach out to other people. But I think diligence is really the top most concern and, do take your time if you can. I know it’s really hard, especially when you’re suffering a lot, you can be in a place of desperation, but please do prioritize the safety as much as humanly possible.

If you’re struggling with dysbiosis, diarrhea, constipation, leaky gut, candida, IBS, IBD, or other gut health or all over body problems, you’re welcome to set up a free, 30-minute breakthrough session with me (Lindsey). We’ll talk about what you’ve been going through and I’ll tell you about my 3- and 5- appointment health coaching programs in which I recommend lab tests, educate you on what the results mean and the protocols used by doctors to fix the problems revealed. Or if you’re ready to jump in right away or can just afford one appointment at a time, you can set up an 1-hour consultation with me.

Adapted from episode 91 of The Perfect Stool podcast with Onikepe Adegbola, MD, sponsored by Casa de Sante and edited for readability.

Lindsey: 

So let’s start by just the basics about what IBS is and what causes it.

Onikepe Adegbola, MD: 

Sure, IBS is a functional gut disorder. The cause of IBS is not exactly known, but it’s thought to be a function of the disturbance in the sensation of intestine for the patients. Some people get IBS after infections. But for most people, the cause of IBS is unknown. There are a few criteria for diagnosing IBS called the Rome Criteria, and doctors follow that criteria. There’s a lot of items in the criteria, such as abdominal pain and other GI symptoms over a certain period of time. And of course, if the patient has what we call alarm symptoms, like blood in the stool, and things like that, though, a lot of things have to be excluded as well.

Lindsey: 

Like inflammatory bowel disease

Onikepe Adegbola, MD: 

Exactly. Colon cancer, things like that.

Lindsey: 

Yeah. And do you want to mention SIBO at all, and the distinction between IBS and SIBO?

Onikepe Adegbola, MD: 

Yeah, so it’s mentioned that a lot of people with SIBO have IBS-like symptoms as well. SIBO is overgrowth of bacteria in the small intestine that can recall in certain conditions or following surgery in some people, and and so once a while, you can use the low FODMAP diet for both conditions; the therapy is not exactly the same. So there’s a difference between the two. People with SIBO often have IBS like symptoms as well.

Lindsey: 

Okay, and so tell me about the low FODMAP diet and how it manages IBS symptoms.

Onikepe Adegbola, MD: 

Yeah, so the low FODMAP diet is a diet, whereby you decrease the amount of fermentable carbohydrates diet, sort of a mouthful of an acronym, right? It stands for fermentable oligosaccharides, disaccharides, monosaccharides, and polyols. So it’s a little bit of a mouthful, but quite simply, they’re all fermentable carbohydrates, that some people don’t digest properly in the intestine, and it gets broken down by bacteria, which results in gas. You know, think about fermentation, like when you’re making beer or, or bread, for example. So you’re going to get a whole bunch of gas. And that’s going to cause, because of symptoms like abdominal pain, constipation, diarrhea, and bloating, when it draws water into the intestine as well. So people with IBS generally have a problem with those type of carbohydrates. So using the low FODMAP diet, you can decrease the amount of those carbohydrates in your diet, and thereby prevent flare ups, reduce the the amount of IBS symptoms. A lot of studies have shown that about 70 to 75% of people with IBS get symptom relief from the low FODMAP diet.

Lindsey: 

And what kinds of foods are FODMAPs?

Onikepe Adegbola, MD: 

Yeah, that’s an interesting question. And that’s what makes the diet sometimes difficult for people to follow, because first you have a whole bunch of carbohydrates, right? And secondly, it’s not like gluten, where you just remove maybe things that have gluten like wheat, for example, you know, that’s straightforward. Or even somebody that is lactose-free, right? You just remove milk and dairy products. So there’s a wide range of foods that are FODMAPs. And I would urge anybody who is trying this diet to not wing it for sure. And there’s the Monash App to go through to find the levels of FODMAPs in various foods. So Monash and FODMAP Friendly are the two organizations that tests for the amount of FODMAPs in food and tell you what servings is okay on the low FODMAP diet, because for a lot of foods even though they may be low FODMAP in low quantities, they could easily get high FODMAP in high quantities. And so so you have to watch the amount of of each food that you take in even if you quote unquote follow FODMAP or moderate FODMAP food. But basically if you want to do a simplified diet in a very simplified manner, you would say that things like dairy for example, lactose, things that have lactose or high FODMAP foods that have onion and garlic. Garlic is high FODMAP because even a a little bit of that, it’s a problem for people who react to FODMAPs Inulin is high FODMAP; you see it in a lot of foods and even in small quantities. That can be a problem. I mean for inulin for example, I don’t even have IBS, but I react to inulin, so that’s something that a lot of people with IBS react to. Sweeteners ending in -ol . . .  . . . all the sugar alcohols . . .  exactly, sugar alcohols. They are high FODMAP. Even the simplest sugar alcohol, which is erythritol, can be low FODMAP. But it still causes, it’s still mentioned  because it causes symptoms all on its own. So I would definitely avoid it as well. And then you also have beans, which I guess we won’t be surprised about, high-FODMAP fruits like apples, which have high fructose content, are high FODMAP. There’s a long list of foods that are high FODMAP. But I think some of the more common culprits, except for maybe onion and garlic, are not a surprise. A lot of people they eat foods, they have problems, a lot of foods, you know, dairy, sometimes I think people, some people would know that as well.

Lindsey: 

Yeah, onion and garlic are definitely the hardest ones to eliminate. Because they’re kind of in everything. And then the powders as well, which are in salad dressing. When I was doing the low FODMAP diet and I went out, I would take my own salad dressing with me to restaurants because otherwise, it was just oil and vinegar, which is kind of boring.

Onikepe Adegbola, MD: 

Yeah, exactly. Because it’s everywhere. Even when you’re not told that onion and garlic is there, it could be there.

Lindsey: 

Right! It’s the base of every recipe practically.

Onikepe Adegbola, MD: 

Exactly. Right. And that’s actually why one of the reasons why we started off with the low FODMAP seasonings, because our seasonings don’t have onion or garlic. So for people on the low FODMAP diet, that’s very, very useful. But you know, we have people who are like “Why would you have a seasoning that has no onion? No, garlic. That’s strange, right?”

Lindsey: 

So you sell those seasonings?

Onikepe Adegbola, MD: 

Yeah, we do. Low FODMAP certified.

Lindsey: 

Okay. And so can you walk us through the process of starting a low FODMAP diet?

Onikepe Adegbola, MD: 

Yeah, sure. So the process, it generally takes about six to eight weeks to go through the low FODMAP diet. And there are three stages. So in the first stage, you would eliminate FODMAPs from your diet. So that’s where the apps like the Monash app, and the FODMAP friendly app, can be very useful, because they help to tell you what serving size is normal. And I think that that’s a low FODMAP normal in that situation. But I think that for a lot of people, that’s probably the toughest part of the diet, just eliminating all those foods. And it can be very confusing for people. It can be easy to make a mistake. And even if you make a mistake, or something goes wrong during that time, you can always start again, you shouldn’t be down on yourself. So you start off with that, that part of the diet usually takes six to eight weeks. And then hopefully by that time, your symptoms will subside, and you’ll get some relief. And now then you get to the second part where you’re trying to figure out, okay, well, so I’ve taken all this stuff, all these fermentable carbohydrates out of my diet, which one is causing my problem? So let’s use a sort of reverse elimination process to figure it out. So you test each FODMAP group, one by one over a couple of weeks or so. There’s a lot of resources, we have some free resources to help you with that part of the diet, which is called reintroduction and which can be tricky for some people, and Monash also has some resources on the app to help you go through that. And then once you figure out, okay, well, this is what I’m reacting to in the diet, whether it’s fructose or oligosaccharides, disaccharides, or polyols, then going forward, you can go into the third phase of the diet, which is the maintenance phase, where you just you have a diet that eliminates what you react to. And hopefully a diet which you can follow everyday and get rid of IBS symptoms. So that’s pretty much it. And the whole process, you know, probably takes a couple of months. And if you have a dietitian helping you, that’s very helpful because it can be confusing for some people. And if you don’t do it properly, then you might not get the relief. Or you might think it doesn’t work. Well, while it might not work for 25% of people, you want to make sure that it’s not working for you because it’s actually not working for you not because you’re not doing it properly.

Lindsey: 

And so I imagine that if you stay on a diet like low FODMAPs for an extended period of time that there could be some risks or downsides. What might those be?

Onikepe Adegbola, MD: 

Yeah, absolutely. And that’s why it’s it’s meant to be a short term diet, even though unfortunately, some people claim that they can’t really ever go back to eating stuff, and they sort of have to keep being on a completely low FODMAP diet for a while, but it’s been shown to change the microbiome. Studies have shown that taking probiotics can help with that, relating to the levels of Bifidobacterium from the low FODMAP diet, but then the other changes with the microbiome have been shown with the low FODMAP diet. And you could, by restricting some foods in your diet, such as dairy and other foods, you could end up with some nutritional deficiencies over the long term. So that’s why it’s not supposed to be a forever diet. It’s ideally a diet which is short-term and targeted. And once you figure out what the problem is, you can move on to a more normal diet.

Lindsey: 

And do you advise people like maybe to use it just when they’re flaring or once they figure out their sensitivities just to stick with that as their base diet?

Onikepe Adegbola, MD: 

Yeah, once you figure out your sensitivities, I would advise people to just figure that out. That’s the best idea.

Lindsey: 

Okay, and can you discuss the other treatment options for IBS? Besides the low FODMAP diet? I assume you use some adjuncts to that?

Onikepe Adegbola, MD: 

Yeah, so there’s definitely medications, good adjunct to the low FODMAP diet for people who want to them. So you’re talking about medications like Linzess, Immodium, antidepressants, all depending on what the symptoms are. So for example, antidepressants, even though people hear antidepressants and they think, oh, well I’m not depressed and so this is not really useful for me, but they’re actually working on the garden. Now, this has nothing to do with depression; so they can be useful in for people with IBS. And also things like yoga, exercise, mind-body meditation. And so even some people have noticed, hypnosis can be helpful. Cognitive behavioral therapy can also be helpful. And so what is very useful is for you to find the combination of things that work for you personalized. You could call that personalized medicine, because everybody’s different with ideas, as I guess a lot of people with IBS know. Because if you are ever in an IBS forum, and people are talking about their triggers, there’s such a wide range of triggers. You talk to 10 people, you get 20 different triggers. So there’s definitely a wide variety of triggers. And what works for everybody is different. So yeah, it’s important to work with somebody if the low FODMAP diet is not helping you. Or maybe if you want to supplement it with something, it’s helpful if you work with somebody who can personalize the diet, personalize your interventions and come up with a plan, a personalized plan that can help you to get your symptoms under control.

Lindsey: 

And so is the mechanism of action with the antidepressants is that these are SSRIs that are increasing your serotonin, such that you have more motility in the gut, like for more constipation SIBO? Or is this also for more diarrhea type SIBO? Or IBS I should say.

Onikepe Adegbola, MD: 

So yeah, so it’s more use it in different forms of IBS. And so it acts on the gut, it helps with pain, for example, people have abdominal pain and IBS.

Lindsey: 

Okay. And do you use Rifaximin at all with your patients?

Onikepe Adegbola, MD: 

For patients with SIBO, Rifaximin is definitely helpful. It’s so expensive in the US and not always covered with insurance. But helpful sometimes you can use it. Also metronidazole, Flagyl, which is metronidazole can also be used because and is cheaper than Rifaximin. So that can also be used for patients who can’t get or find the cost of Rifaximin too expensive or who can’t get it from Canada. So if you get it from Canada where it is cheaper, it can definitely be used, it’s possible. And then also, placebo. People have also looked at antibiotics, herbal antibiotics like oregano on and whatnot can be effective as well.

Lindsey: 

So what kind of testing do you do to determine what patients have?

Onikepe Adegbola, MD: 

It’s mostly a diagnosis that you can make from symptoms and mostly from symptoms. But if the patient is having what we call alarm symptoms, like blood in the stool, change in bowel habits and things of that nature, you might want to do tests to rule out something that could be sinister. So you want to rule out colon cancer, for example. And IBD is also differential, a possible diagnosis. So you want to rule that out as well. So while IBS is a diagnosis you can make through history, if a patient has alarm symptoms, and in certain situations with age or whatnot, you might have to do some testing just to rule out celiac disease, rule out IBD, rule out colon cancer.

Lindsey: 

So would you send people to their local gastroenterologist in that case for a colonoscopy?

Onikepe Adegbola, MD: 

Yes, in that case, yes, we will. Although we do prefer patients who have seen their gastroenterologist already because we’re not aiming to be their primary care, or their primary gastroenterologist, we’re more an extension, a help, because people with IBS often have, you have all those symptoms and it takes time and trial and error to resolve them. And so the time that they spend, the doctors have 15 minutes or 20 minutes in a typical appointment, which is just not enough, and is often rushed for them. And also they have to make appointments to see the doctor, which could be weeks, days or whatever, in the future when they’re having symptoms like right now. And you know, they can’t get anybody to talk to them. We’re that stop gap where you have somebody you can always talk to. We have the time, we have long appointments, and we focus solely on IBS. So it’s not a situation where you know, you go to your doctor and they say, okay, well try the low FODMAP diet. And you’re like, Well, how do I do it? And oh, well Google it, they give you a short handout with two sentences. And we so we go in depth and really help you to get a hold of your IBS symptoms and take control of your symptoms with personalized plans.

Lindsey: 

Okay, and so can you tell me a little bit more about your virtual IBS clinic and how you help people manage their symptoms?

Onikepe Adegbola, MD: 

Yeah, sure. So we actually started off as a low FODMAP brand. So for the last few years, we’ve been selling low FODMAP products, foods like the seasonings, like I talked about salad dressings, protein powders, as well as gut health supplements, which are low FODMAP certified, so that people on the low FODMAP diet or with some food intolerances have the confidence that what they’re eating is not going to give them problems later on.

Lindsey: 

Is that under the name Casa de Sante?

Onikepe Adegbola, MD: 

Yeah, that is correct. Yeah. So that is under the name Casa de Sante. And in the process of doing that, we’re very in tune with clients and customers. And we would get a lot of inquiries while we tried to help them, even though we always had the disclaimer that this is not medical advice. So we saw the need interacting in groups talking to our customers for this type of service, because a lot of people are just going to Facebook groups at this point and asking questions of people. It’s always good to get information from your peers and learn from people’s experiences, I think that is very useful, but it’s also helpful to get it right also sometimes more helpful to get help that could help you in the long term rather than just ad hoc recommendations as you have problems. So we started this service as a virtual personalized service. That is integrative care. So you have not just a doctor or a GI clinician, you have a GI clinician that is specialized in IBS, as well as a dietitian who is specialized in IBS, as well as a health coach to help you resolve your your IBS problem. So we have a holistic and personalized approach. And we have you set up appointments, providers, and you have long appointments, you have access to resources, you have a community, you have meal plans that can help you, you have testing; we do advanced testing. So if you have to do food sensitivity tests, we can help you. And based on all the data we get from the testing, as well as from your symptoms, we can come up with a personalized plan for you. And if you have questions, you have an app where you can log your symptoms and then reach out to us if you have questions or if you have any issues with IBS. So we have a whole approach, which is both the consultation and the the visits with the clinicians, and also the low FODMAP products if someone needs it. Okay, so how do you work with your patients to tailor the low FODMAP diet to their individual needs and preferences? Yeah, so a lot of people who have difficulty following the low FODMAP diet, just because it can be very restrictive. Actually, it is restrictive. So it can be difficult to understand and it’s not a lot of people that go about the whole place carrying a scale to weigh their food and to be exact, right? So it can be challenging from that perspective. And so for people who can’t, or are having difficulty following the low FODMAP diet, we can do a simple or gentle low FODMAP approach, whereby we eliminate the most common common offenders such as milk, onion and garlic wheat, wheat containing products. And I just want to mention that wheat is a FODMAP so it gives people problems, not because it contains gluten but it contains fructans. So some people who think they’re reacting to gluten might actually be reacting to the fructans in wheat and those types of gluten-containing grains. And so you could you do a gentle approach and start off with eliminating those and see if it helps the patient. And if not, then you can go into the full bore low FODMAP diet. And so we tailor it to our patients based on what they can do and what we understand from their previous experience. And some people already know what they react to, to some extent, and some people don’t. So everything’s personalized. And for some people, it just doesn’t work for them. They’ve tried it before, and it doesn’t work. And so that’s not necessarily the answer. And we know that 25% of people do not get any benefit from the low FODMAP diet, even with IBS.

Lindsey: 

So if the low FODMAP diet doesn’t help at all, what are the likely causes if say bloating and gas is one of the big symptoms?

Onikepe Adegbola, MD: 

Yes, trying an elimination diet can be helpful, because even if you don’t react to FODMAPs, you could react to other foods. So definitely having a diary and doing an elimination diet will be a good first step. And then for bloating, bloating is a whole interesting, subject by itself. But you want to start off by saying, okay, well, when is the patient blaated? When is the client bloating? Or how soon after eating does the client bloat? And then you can divide up the possible causes. And there’s a wide range of causes depending on when the bloating occurs, how soon after eating, and, and also understanding people have a very different description of what bloating is. For some people, bloating could be distension of the abdomen, of the stomach. Also for some people it’s the sensation of fullness. So you also have to understand what the client means by bloating. So that’s where understanding what the symptoms are, when they occur and taking a good history from the patient and understanding what is really happening helps. And then based on that we can do further tests to figure out what is going on. And we recommend some general approaches that would help anybody that has boating such as, don’t drink heavily caffeinated drinks fast, things like that are just helpful for people in general that have bloating, while you figure out what exactly is causing the bloating.

Lindsey: 

Are you using the functional medicine stool tests?

Onikepe Adegbola, MD: 

Well, yeah, we use different various tests, depending on what the patient’s symptoms and history are.

Lindsey: 

So which tests do you like?

Onikepe Adegbola, MD: 

I wouldn’t say we like a particular test. Again we go through this very personalized approach. It really depends on what the patient’s history is. And various practitioners do have their favorite tests. We have a few different practitioners in our practice and they do have their favorite tests. We try to individualize it for each patient.

Lindsey: 

Yeah, there’s a little different offering on each test of what’s included. So this is true. Okay, so can you talk a little bit about the research on the effectiveness of the low FODMAP diet for IBS?

Onikepe Adegbola, MD: 

Yeah, so research has shown that it is effective in about 70 to 75% of patients with IBS general, generally. The FODMAP gentle approach has also been found to have high effectiveness. Even if you don’t go through the whole low FODMAP approach, it can be helpful. And even having eliminated some of the common triggers that we know about has also been, which is also more simple than the low FODMAP diet. It has also been shown to be helpful. So just eliminating wheat and milk and and high fructose foods, high fructose corn syrup, and that sort of stuff can also be helpful. So yeah, so the low FODMAP diet is clearly effective for many people with IBS, but not all.

Lindsey: 

And so we talked a little bit about the low FODMAP diet and the impact on the gut microbiome, but what can you, and if you want to elaborate any more on what else it does to the gut microbiome, but what steps can you take to ensure that you still have a healthy microbiome?

Onikepe Adegbola, MD: 

So it’s been shown that taking probiotics can be helpful with that.

Lindsey: 

Like lacto-bifido type probiotics?

Onikepe Adegbola, MD: 

Yeah, bifidobacterium varieties as well as lactobacilli, yeah, that’s also helpful. And that’s why we have a low FODMAP certified probiotic that has a number of probiotic strains that are helpful bacterial strains that are helpful for IBS. It’s low FODMAP certified.

Lindsey: 

Are there are strains you should avoid when you have IBS?

Onikepe Adegbola, MD: 

I can’t think of any particular strains that you should avoid. The thing is that so many different stories on probiotics that have different varying results. So the data on probiotics is not always very clear, as oftentimes, you need more stories. And so that’s why the type of probiotic and the the administration of the probiotics is just very individual to people. And so we recommend that. Okay, when you try a strain, you try it for a short period of time. See if it’s working for you, make sure it’s not making your symptoms worse. And if it’s not working, or is making your symptoms worse, then you stop it. But probiotics are also very individual as well.

Lindsey: 

Yeah, I have heard the suggestion that people with SIBO, the probiotics can be overgrown themselves, that you can be essentially implanting strains that will overgrow.

Onikepe Adegbola, MD: 

Yeah, I have I heard that too. And then there are also studies that show that probiotics can be helpful.

Lindsey: 

I know. It’s always tricky to decide whether or not to recommend them.

Onikepe Adegbola, MD:  

Yeah, exactly. The data is definitely conflicting with probiotics. And so if you could get it, you’ll try it. I just recommend that if people want to try, they try a short trial and see if it works for them or not.

Lindsey: 

And so how do you recommend including low FODMAPs food and supplements into an overall healthy diet?

Onikepe Adegbola, MD: 

So I think if you’re on the low FODMAP diet, and while you’re in the elimination phase, the first phase, you want to avoid high FODMAP foods and supplements. And so there was a study that came out recently, maybe a year or so ago now, that showed that a lot of people just did not realize that a lot of medications and supplements have things that are gluten, they have lactose, and they could actually be a cause of problems for people who have food intolerances or allergies. In general, there’s probably just a little bit in those in of the FODMAPs, in those supplements and medications. But some people could react to that. So you probably just want to make sure that if you’re still having symptoms, check your medications, check supplements, they could possibly have FODMAPs in them, and they could be the source of your symptoms. I think I remember someone having inulin, for example, that could be in a lot of medications. And that’s a huge, even for me in small amounts, that’s a huge trigger for bloating and gas.

Lindsey: 

And it’s also a big additive to those [granola] bars.

Onikepe Adegbola, MD: 

Exactly.

Lindsey: 

The commercial ones because it’s a lot of added fiber. Low cost, I guess.

Onikepe Adegbola, MD: 

Yeah, exactly. Exactly. So I would I use a low FODMAP certified product, low FODMAP brand is probably the way to go while you’re doing the elimination phase of the low FODMAP diet.

Lindsey: 

You know, I sometimes see now the brand in stores called Fody.

Onikepe Adegbola, MD: 

Yeah, they have a number of low FODMAP products as well.

Lindsey: 

So tell people where they can find you.

Onikepe Adegbola, MD: 

We are at Casadesante.com. We have a lot of resources for people, not just on the low FODMAP diet, but also on IBS and gut health in general. We’re also on Instagram, Facebook, and X, all the major social media platforms. And you can also email us or contact us through our website as well.

Lindsey: 

Okay, and any final thoughts before we finish up?

Onikepe Adegbola, MD: 

Well, I just want to thank you for having me here. Always happy to answer any questions anyone has about gut health, IBS or the low FODMAP diet and you know, here’s to your health and healthy poops!

If you’re struggling with dysbiosis, diarrhea, constipation, leaky gut, candida, IBS, IBD, or other gut health or all over body problems, you’re welcome to set up a free, 30-minute breakthrough session with me (Lindsey). We’ll talk about what you’ve been going through and I’ll tell you about my 3- and 5- appointment health coaching programs in which I recommend lab tests, educate you on what the results mean and the protocols used by doctors to fix the problems revealed. Or if you’re ready to jump in right away or can just afford one appointment at a time, you can set up an 1-hour consultation with me.

Adapted from episode 90 of The Perfect Stool podcast and edited for readability.

Today’s post is all about butyrate and tributyrin, which is the best absorbed form of butyrate. This is a supplement I recommend frequently to my clients and which some of my favorite gut health mentors like Dr. Daniel Kalish and Grace Liu, PharmD also recommend for certain gut issues. It’s particularly indicated for people with diarrhea, loose stool, IBS-D, hydrogen or hydrogen sulfide SIBO because it slows motility and leads to firmer stool. But before I launch in, I was to make a disclaimer that this should not be construed as medical advice and that you should see you own health care practitioner to make decisions about your own care.

Some of butyrate’s known health benefits are providing the primary energy source for the cells that line the colon, or colonocytes, improving the integrity of the gut barrier, aka reducing leaky gut or a leaky colon in particular and therefore, reducing inflammation and preventing the leakage of toxins into the bloodstream.

It has also been shown to enhance insulin sensitivity, which can reduce the risk of type 2 diabetes. It also has all-over body anti-inflammatory properties. And if that wasn’t enough, if you’re short on butyrate-producing microbes, which is associated with an increase in metabolic disease, type 2 diabetes, and obesity, butyrate may also be helpful. Supplemental butyrate has been shown to lower hemoglobin A1C and reduce blood-glucose spikes in type 2 diabetics, reduce insulin resistance, and reduce obesity-associated inflammation.

In addition, in animal models, when they purposely fed the mice high fat diets, which aren’t great for mice, butyrate prevented them from becoming obese and having the accompanying metabolic issues that accompany obesity. It was also shown to bring about weight loss in a randomized clinical trial of obesity in children. But in one study it did increase the weight of rats born to mothers fed butyrate, so I generally don’t recommend it for pregnant women, although Lucy Mailing, gut health expert and my guest from episode 25 of the podcast, made a good argument for using it even in during pregnancy in one of her office hour calls, and took it herself while pregnant. (See Episode 90 Show Notes for links to those studies).

Butyrate has also been found to have neuroprotective effects in animal models of Alzheimer’s and Parkinson’s Disease and therefore may help to improve cognitive function and reduce the risk of neurodegenerative diseases.

Butyrate is also great to use in autoimmunity because it supports the formation of regulatory T cells, which quells inflammation and suppresses autoimmune-type responses. Because the more your T cells are being differentiated into regulatory T cells and not other types the better, because the other types are the ones that can exacerbate autoimmune symptoms.

Then tributyrin, which is formed of three molecules of butyric acid combined with one molecule of glycerol is a form of butyrate that is found in newer supplements, as opposed to sodium butyrate, potassium butyrate, magnesium butyrate or calcium butyrate forms, and has been found to be preferable to other forms of butyrate because it has a low odor and chemical stability, meaning it’s resistant to breakdown by gastric and pancreatic enzymes. This means that it can reach the large intestine intact. Tributyrin is also superior to other forms of butyrate for its ability to diffuse through biological membranes, releasing butyrate over time directly into cells as opposed to other forms of butyrate, which are metabolized rapidly as soon as they enter the cells lining the colon. Tributyrin has also been found to be more effective than other forms of butyrate in uses with animals, such as improving gut health in livestock and modulating immune function.

So now I’m going to focus in on the gut health benefits I’ve seen in myself and others of supplemental tributyrin, which are supported by the research.

So when you take antibiotics, your body’s ability to produce butyrate likely drops significantly. In animal models, the use of 3 days of oral antibiotics decimated the gut’s ability to produce butyrate from fiber and increased oxygen levels in the colon. Now the colon is supposed to be oxygen-free, also known as hypoxic. And a healthy, hypoxic colon supports both anaerobic bacteria, which can’t live in the prescence of oxygen, and facultative anaerobes, which can live with or without oxygen. But importantly, the anaerobes are the ones who produce butyrate to feed the colonocytes. Most butyrate producers belong to the Clostridium cluster of the phylum Firmicutes, such as Faecalibacterium, Roseburia, Eubacterium, Anaerostipes and Coprococcus, among others. So post antibiotics, when your gut becomes unable to produce butyrate, it will pull in oxygen as an alternate fuel source. This promotes the growth of facultative anaerobic bacteria, typically proteobacteria. In my experience, this leads to messy, loose stool, a poor mucus lining, and an inflamed and leaky colon. So supplementing with butyrate during and after antibiotics can reverse this cycle and help restore the healthy balance between anaerobic and facultative anaerobic bacteria. Lucy Mailing described this process in a great blog called “The oxygen-gut dysbiosis connection” and also spoke about it when she was on my podcast.

In my personal experience, because I have post-infectious IBS leading to frequent hydrogen-dominant SIBO (or small intestine bacterial overgrowth), I often have periods of bloating and accompanying loose stool and sometimes diarrhea. Tributyrin has been my savior in these periods so that while I’m working on reducing the quantity of bacteria in my small intestine, I can still have firm stool and maintain a healthy mucus lining. I don’t know about you, but if you’re dealt with loose stool, when you have a good one, it just puts you in a great mood. The trick with using tributyrin in my experience is getting the dosing right, and that happens most easily by increasing the dose until you get firm stool, and then when it gets too firm, like rabbit pellets, decreasing the dose until it’s just right. Personally, I have found that I’d typically need something in the range of 900-1500 mg and at times even as much at 2000 mg/day to or more to start to achieve firm stool, but then I can decrease my dose after that. The nice thing about butyrate is it has very few known side effects, with even higher doses up to 2,000 mg/day, no short-term adverse reactions have been observed in studies. Of course I don’t recommend it to my clients with constipation because it does slow motility and constipation does increase your short-term risk of GI and other cancers.

And since I found that I needed such high doses to achieve the desired result, and because the available supplements in capsule or gel cap format were typically 300 to 500 mg each, I always felt bad telling clients about it and then telling them that in addition to the other 10 things they were taking they might likely need 3-4 additional pills of tributyrin once or twice a day to get the desired effect. So this is probably a good moment to mention that because I saw this obvious hole in the marketplace, I set out to solve the problem by making a higher dose tributyrin supplement. So this is actually the first time I’m announcing publicly that I have this new supplement available for sale called Tributyrin-Max, a 750 mg/capsule tributyrin supplement in a hydroxypropyl methyl cellulose capsule, which is an enteric coated capsule so that it makes it through the stomach acid and to the intestines. It is available on tributyrinmax.com (free shipping for 1-3 bottles and low cost after that) and on Amazon.

This is pretty exciting for me but I also do it with a little bit of trepidation. Up until now I have been very agnostic about supplements, meaning I don’t have loyalty to any particular brand and choose what I think is best for my clients. And because I’m a pretty skeptical person myself when I see health celebrities promoting their own products. I have to admit that it has made me question their integrity. The dilemma is that it’s really hard to make a living seeing clients the way I do, because I give them like 1-3 additional hours of prep and follow-up time for every hour they spend with me. So that only allows me to see 3 gut health clients per week in addition to all my other duties with the podcast and newsletter and answering client emails. But I spent a really long time thinking about what if anything I might sell as a supplement, and I only wanted to sell something I felt I could unequivocally recommend, that didn’t have really contradictory evidence, like probiotics, for instance, and for which there actually was a legitimate need in the marketplace.

So rest assured I wrestle with the ethical dimensions of selling my own supplements, I won’t unequivocally recommend them to anyone. Like even on the bottle I put that people with constipation or with a history of polyps in the colon shouldn’t take it, which no one else selling it warns against, because there is a little bit of evidence that because butyrate is a food for the colonocytes, it could be cancer-promoting for those with a history of polyps, although there is a much greater body of literature showing it’s preventative for colon cancer, prostate cancer, tongue cancer, breast cancer, lung cancer and neuroblastoma. I’ll link to the Lucy Mailing article called “SCFAs Part 2: The benefits of butyrate” that cites all that literature as well as the studies that show its potentially negative impact on colon cancer. In her article, she also cites additional benefits to the brain of butyrate, including increased neurogenesis, reduced oxidative stress, and improved recovery following ischemic brain injury as well as potential benefits for skin and bone health. And then in a following blog “SCFAs Part 3: Decrypting the butyrate paradox: can excess butyrate be toxic?” she talks about potential drawbacks, especially in the case of active and flaring ulcerative colitis, and about the importance of only taking physiologic doses, which she describes as 600-1200 mg/day of tributyrin.

Also, because of the capsule ingredients, because emulsifiers and other food additives have been shown to be harmful for people with inflammatory bowel disease, I might advise caution on that front as well. The studies I’ve seen are only on mice and concern something called carboxymethyl cellulose as a food additive, not hydroxypropyl methyl cellulose, which is actually used as a coating for capsules of IBD-targeted pharmaceuticals, but if you want to exercise an abundance of caution, there is one powdered tributyrin supplement called AuRx* that’s available in my Fullscript Dispensary instead, that has a delivery mechanism that makes it not gross to eat as a powder. It was actually designed for kids with autism in mind, because butyrate has been shown to be beneficial in autism. But reading through one of Lucy Mailing’s other blogs on butyrate, which is linked in the show notes, I think that butyrate may not be advisable in higher dose format for people with active and flaring Ulcerative Colitis, although I do have one client who has definitely benefitted from it.

But if that’s not your concern, the capsule is a plant-based capsule and okay for vegans or vegetarians. I would actually have used a gelatin capsule but the manufacturer told me there was a 1-year wait for those.

So to sum up, if you have loose stool, diarrhea, etc. and it’s from SIBO or dysbiosis that involves a likely dominance of proteobacteria, which is often the case in post-infectious IBS that causes SIBO and following heavy antibiotic usage, tributyrin is a good supplement for helping slow motility and firm up stool and reverse the cycle of an oxygenated gut. And of course, trying to bring more fiber into your regular diet so that the bacteria can ferment the fiber and produce butyrate naturally. So I’m talking about beans and lentils and psyllium husk fiber. Those things are all great for producing butyrate naturally. And if you have SIBO or other dysbiosis, you need to see an appropriate health care practitioner to deal with that and determine the reasons for it and address it as well. Which as you know is something I do with my clients, and you’re welcome to set up a free, 30 minute conversation with me to find out if I can help you.

And if you’re interested in trying my new butyrate supplement, Tributyrin-Max, I’m offering a 15% off discount code for your first order, which is INTRO15.

Adapted from episode 89 of The Perfect Stool podcast and edited for readability with biochemist and natural health researcher Barrie Tan, PhD.

Lindsey: 

So, I heard you speaking on the Chris Kresser podcast, and I immediately went out and got some tocotrienols to try. And so I was really excited when you were able to come on the podcast. Why don’t we just start with talking about what tocotrienols are and how they differ from tocopherols, which are the typical form of vitamin E contained in most multivitamin formulas.

Barrie Tan, PhD: 

Yes. Vitamin A has two groups of compounds called tocopherols and tocotrienols. The tocopherols are more known, and you can see them on your cereal box, and tocotrienols are less known. The plant makes these two compounds, when the protection in the plant is more serious, then the plant likes to make tocorienols. So you intuitively know that it’s probably more potent, and otherwise, if it’s normal ones that use tocopherol. So, in the US diet, most of our vitamin E are tocopherols with a few exceptions than the tocotrienols, so the last 30 years of my life has been spent looking for the active form of vitamin E.

Lindsey: 

Okay, so the tocotrienols are the active form, whereas, the tocopherols are inactive? Is that-

Barrie Tan, PhD: 

Not inactive – less active, the tocopherols and the tocotrienols are active enough that about this book, you can see from the title of the book, “Tocotrienols: Vitamin E Beyond Tocopherols.” Tocopherol is the only E people know and tocotrienols people know less. You see, I was one of the authors so it’s more an academic book, so I don’t tell people much about it. This is a more consumer book, I wrote it as a labor of love and people can download on your website free of charge: “The Truth about Vitamin E,” is the book and they can download it from here.

So I started my career as a University of Massachusetts professor in 1982. And then I started to study vegetable oil. So intuitively, if vegetable oil is where you find vitamin E, the plant makes vitamin E to protect the oil from going rancid. So that is like that. So I know we are all to some extent very self-centered, somehow the plant makes things for us. The plant never makes things for humans. We ought to be grateful that they make things that are helpful to human health like that. They make it to protect themselves and for their own survival. Plants typically don’t make a lot of fat, but when they do have a lot of fat like corn oil, soy oil – actually corn and soy is not a huge huge amount of fat, but when they take the meal out and feed the animal or make tofu, left behind would be the vegetable oil and then the vitamin E goes there to protect it. When you think of a human being we typically have anywhere from a 20%, which would be exceedingly lean, to 40% is on the obese side. If you average a person of 30% fat, so in general, a human person has more fat than the plant ever would have. From there you can tell if we carry on average of 30% fat, then this fat needs to be protected. So that’s where I study Vitamin E to find out how it can protect us from oxidative damage.

Lindsey: 

Okay. So, I understand that the tocotrienols that you work with are sourced from the annatto plant, so tell me how you came across this source of tocotrienols.

Barrie Tan, PhD: 

Yeah, I discovered the three major sources of tocotrienols from plants which I had said earlier are difficult to find compared to tocopherols. The first one I found was in palm – palm oil. And people have questioned about taking palm oil, saturated fat and all that, but palm oil has a fair bit of tocotrienols. And then rice bran – the brown part of the rice bran, also has tocotrienols. It’s kind of like an open secret. When you eat Japanese tempura, they deep fry it with rice bran oil and rice bran oil is stable because of the tocotrienols in it, otherwise the oil will go rancid even faster; however, rice and palm contain about 25 to 50% tocopherols. Now, I’ll come back to that later.

So I was looking for a source that is very rich in tocotrienols, then the year was 1994. There was a professor at Harvard. Her name was Joanna Seddon and she discovered that on the back of the retina of the eye, they’re laden with zeaxanthin lenses to filter out the blue light. If you fast forward to today, everybody knows that if you take lutein and zeaxanthin, it’s good to prevent macular degeneration, but this was back in 1994. It wasn’t long ago. So now I know that in South America, in Peru, there would be a huge, giant marigold plant. I went there to look for marigold petals to extract lutein from the petal that it will be good for the eye. But then, by this time I was already studying tocotrienols. Then fate has it literally 20 feet away from me, I saw the annatto plant. You will have heard of the annatto plant because we use the color for coloring cheeses, Dorito chips and macaroni and cheese. If you touch it like I pretend to do here, it will stain (the plant). I intuitively knew something was unusual. By the way, the color is also a carotene, like lutein and zeaxanthin. Except it’s very unusual. If you look at this fruit, it doesn’t have a fleshy part, like fruit has. If you think of any fruit you eat, it has the fleshy part, but this just has the seed and then this stamen. Because I was a carotenoid chemist, I thought of something. If you think of a carrot, you have to cook the carrot to get the beta carotene out. You’ve got to cook a tomato for a long time in oil to get it out if you do Italian sauce. I knew that carotenes are so unstable; they are protected inside the cell of the cytoplasm. And even in lobster and crustaceans you have to cook them and then they deprotonate. And suddenly the yucky green or blue color becomes an orange or red color. Like you come to New England to eat a lobster.

Now when I explain it, it sounds so trivial like that, but it’s in my DNA, I kind of know this thing. But when you touch this guy here, it is not bound to anything. Notice that? You just stained your finger. So, I intuitively thought, “It must be a powerful antioxidant to protect the carotene from oxidative damage.” It was only a figment of my guess. I thought that it would be a polyphenol, which will happen a lot in nature. Surprisingly, it wasn’t. And more surprisingly, it is a vitamin E molecule. And most surprisingly, it is a vitamin E molecule that only contains tocotrienol and not tocopherols. So that would be my third attempt. Palm and rice contain 25 to 50% tocopherols. Annatto tocotrienols are completely free of tocopherols. By this time, I had already been studying tocotrienols for some 2025 years. I immediately called my professor friend. At the time he was at University of Wisconsin, Madison, and asked him, “What do you think?” I remember he told me, “Barry, if tocotrienols were to mitigate human chronic conditions, this tocotrienol better be, otherwise, you and I are completely a lost cause for our desire to bring this to bear.” So the last 25 years, I’ve been committed to do a chronic condition with this sort of vitamin E. And happily, they work on many chronic conditions that we study.

Lindsey: 

Interesting, and we will talk about that. But I did just want to mention I lived in Costa Rica for a year and a half. And I learned how to make a few dishes there and one of them, Arroz con Pollo, uses annatto as a spice and they come in tubs in the grocery store. They’re just bright red, orange sort of tubs that you can take a chunk out of and it was like a refrigerated margarine, about that consistency.

Barrie Tan, PhD: 

Wow.

Lindsey: 

Not like the pebbly stuff that you find here in the spice aisles. And of course it tastes terrible if you eat it straight but it adds a subtle flavor and of course an obvious color to the whole dish when you add like a teaspoon or two.  I bought a couple of tubs years ago and I still keep it in the fridge and of course it doesn’t seem to go bad at all which is because of obviously the protection that it has.

Barrie Tan, PhD: 

Yes and if you could sometime, you have my email, send me that you said the Spanish word. I will try to look for dishes. I know they’re not classically American dishes. South Americans use it for a lot of their food. I was able to track, even the Inca Indians use it for their food in Peru and other places. Here it’s a very sterilized use, like we put it in cheese, but besides that it’s not used in any food dimension that I’m aware of. And curiously, I thought of this one time. It is not known to the Asian context. I’m Asian. With the exception of Filipino, and then I was able to track it because the Spanish that went to South America also were in the Philippines for 400 years. Sometimes when I tell my American colleagues, it’s hard for them to put their heads together. The Spaniards were in the Philippines for 400 years, as long as they were in South America. So not surprisingly, many of my Filipino friends, they have Hispanic names, and they look like me. They’ve been there for a long time. A lot of Filipino foods also use annato. Isn’t that interesting? So they brought the flavor and the seeds and they grow it in the Philippines. So a lot of Filipino empanadas –  and that’s a Spanish word, but if you ask any Filipino, they know empanadas. And then they make this little reddish looking and then they put this annatto in. But otherwise the other part of Asia or Southeast Asia it’s an unknown spice; they don’t use it at all.

Lindsey: 

Yeah, well, I’ve got two recipes, I think, that call for it: the Arroz con Pollo which is chicken and rice, and then one another is a chicken dish. I will send you both those recipes and I’ll post them in the show notes. So I’m wondering, are tocopherols harmful to take as a supplement?

Barrie Tan, PhD: 

Not harmful unless you take them in high amounts. If you remember, the late 90s into the 2000s, all the published work on Vitamin E was negative, even women who take it, Harvard Women’s Health Study, and some of the women have higher incidence of breast cancer and men who took it had prostate cancer. I think that the reason is because of all the eight Vitamin Es (four tocopherols and four tocotrienols), alpha tocopherol is the only one that has a transport protein. That means that when they cross the cell membrane, they have a right of passage. They have a protein that takes them in. Only alpha tocopherol has it, the other ones just go in by diffusion. Diffusion simply is an engineering phrase: “low concentration, high concentration.” You will move from the high concentration to the low concentration. Just like if you put sugar in a glass of water, and the sugar first sinks to the bottom. Over time, you see some wiggly thing, it will move from the high concentration as the sugar dissolves into the low concentration. That is a process of diffusion. And that’s how Vitamin E would work with the exception of alpha tocopherol. Because they have a transport protein that helps. So in those studies, when they use alpha tocopherol, they use 400 ones and 1000 milligrams. So a lot of this vitamin E goes in, it had no place to go. And I think that they are not good for you. However, if we were to eat a normal diet containing 10 to 15 milligrams (15 milligrams is 100% of the recommended daily allowance), that would be fine. However supplemented, people will have 10-20, even 30 times higher concentration of alpha tocopherols. That’s a problem. But we did not find that to be a problem with tocotrienols.

Lindsey: 

And so what conditions has the research shown that tocotrienols can benefit?

Barrie Tan, PhD: 

Okay, how about I tell you some of the conditions we’ve studied, and then we can fractionate them? We did a lot of studies in the last 20 years on chronic conditions. And I think that for the audience to appreciate this, right, we’re not talking about a drug. We’re talking about supplements. and this is almost my entire lifetime studying this. So this is, if I weren’t here, I doubt a very large company would put this kind of money and time and effort and energy to do it. So we did probably about 15 to 20 clinical trials. And the kinds of studies we were involved in, chronic conditions we initially studied were dyslipidemia: high cholesterol, high triglycerides; insulin resistance; people who are prediabetic (but not yet diabetic) and finally we studied a group of people who are diabetic. And now we have committed to have a huge amount of resources to study fatty liver disease.

Now if the audience is having any of these conditions, you would understand. For the audience members that do not have these conditions, you’re blessed, but just to give you some numbers. People who are prediabetic are about 90 million Americans. People who are diabetic, 35. And about another 100 million people who have fatty liver disease. Of course, some of these things overlap. So therefore, huge numbers of the American population has this kind of problem. Most recently, we are studying people beyond overweight. They are obese – men and women in Texas. So in the studies that we are doing, people with prediabetes and dyslipidemia, our study calls for anywhere from 100 to 250 mg. Say you round it up 100 to 200 mg. For people who are diabetic, the studies were about 250 to 350 mg. For fatty liver disease, (remember, the liver is a larger solid organ), we actually did three studies on this, Lindsey. We did a three-month study, a six-month study and a 12-month study. We already were convinced 600 mg was needed for this. We didn’t change the amount, we just did the time, because I wasn’t sure that after three months, if we were to be successful, that it would continue to be so in six months. So therefore, it’s not a dose-dependent study, but instead a time-dependent study. So we stayed with the same dose. We studied different things at three months. We studied stress enzymes and the stress enzymes come down and drop.

And the second study, we studied steatosis, which is fat in the liver. We used our ultrasound to map it like you use ultrasound to look for a baby in a mother. We were able to see the fat egress from it in a six-month study. In the 12 month study, we decided to go for gold. We decided that I have to go beyond getting consumers to be interested, or a primary physician to be interested. I have to convince the specialist to be interested, which means that these are liver specialists. So we decided to do CAT scans. And we saw that the fibrosis score is reduced the steatosis also is reduced. When the fat stays in the liver for too long, it forms a scar. So the doctors call it fibrosis. And that’s kind of like considered not reversible. So now we can clearly confirm that fat is reduced. Inflammation is reduced, liver enzyme is reduced, steatosis and fibrosis.

But there is something I will keep last to tell because I’m initially very skittish to talk about this. We noticed this in the three months. I was not very convinced. So in the six months, we saw it again. And my science director, says, Barry did you notice this?” I saw this, but I’m hesitant to make a comment on this. How about we do a 12-month study? And we repeated it. The shorthand is, the people who have fatty liver are already generally overweight; they lost weight. And in our clinical trials, we did not have that as a primary outcome. See, when you design a trial, you have to make a hypothesis. What are you looking for? We did not look for weight loss, but then they lost about 10 to 15 pounds consistently in three months, six months and 12 months. So I asked, “How are we going to report this? Factually it is true.” Can you imagine that? Most people will do the opposite. They just say weight loss and then they go sell a heck of a lot of product. I’m doing the opposite. You know why I was worried Lindsey? When when you say the word weight loss, people expect a weight loss in two to four weeks. Well, I never had data at one month. My shortest data was three months, even so you saw weight loss at three, six and 12 months and just say that. If people say, “Would I see weight loss in one month?” No, we don’t have data on that, but you can say that we saw the weight loss. So now we can consistently see sustainable weight loss on the largest organ in the body that at three, six and 12 months. I think tocotrienol is not intrinsically a weight loss product. Instead, it helps people’s metabolism out of kilter to come back to balance and the inflammation drops, the stress to the liver drops, and as a consequence of that, their weight also comes back to normality.

Lindsey: 

Interesting. So does it matter whether the fatty liver is non alcoholic or could it be alcoholic fatty liver too that this would impact?

Barrie Tan, PhD: 

This is a brilliant question. We only studies non alcoholic fatty liver. But the reason this disease was called non alcoholic fatty liver disease – It was discovered by the Mayo Clinic in 1984. Not so long ago. I don’t know if you know this story. This is a cute story. Well, it wasn’t cute when it happened. There was this guy. He went to see the doctor. And the doctor looked at the numbers came back and said (I just made up his name), “Mr. Jones. Do you drink alcohol?” Mr. Jones says, “No, I don’t drink alcohol.” So the doctor went back to the lab and came back again. And now a little bit more accusatory tone. He spoke with Mr. Jones and said, “Are you sure you don’t drink alcohol?” See, with that kind of intonation, Mr. Jones is upset. He says, “I told you I don’t drink alcohol!” So that was the reason because Mr. Jones’ liver looked like a cirrhotic liver from somebody who drinks alcohol. It wasn’t. So all this to say that when we take in a lot of carbohydrates and fat, we can make the liver almost look like someone who drinks alcohol. So a short way to answer your question is we believe that people who have a cirrhotic liver caused by alcohol also would benefit from tocotrienols because their liver looks the same, which is why awkwardly this disease is NAFLD. After NAFLD, they become NASH – non alcoholic steatohepatitis. So the liver looks like a person with hepatitis A, B and C. Hep A, B and C are different because they are caused by a virus. And by the way, this tocotrienol worked positively for people with hep C virus, totally different mechanism.

And that was done, sorry I to have to tell so many stories, but when we designed this study, Lindsey, the investigator and I decided that if you have people with Hep C, you have to recruit people. He said we have to exclude people with Hep C, if they have alcoholic liver, we have to exclude them, otherwise, we have all the “monkey on my back.” I cannot interpret my data. That’s how you randomize a study. He was fine with that. When he was recruiting the 100 older patients, about 12 to 15 of them had hepatitis C. So he had to exclude them. But what he didn’t tell me was curious. He separately gave them a tocotrienol. It was not in the study, it was excluded. He didn’t tell me. A few years later, I found an answer “Barrie, did you see this? Our tocotrienol is used on people with Hep C. It actually worked to reduce the viral titre in the people.” Then it tracked back to the author, and the author is the same one that did the NAFLD. So he excluded it. It also helped people with that. So we did not continue that study because Hepatitis C is a different direction; it is caused by a virus but it probably, I think, any damage to the liver, whatever the reason might be, at minimum, tocotrienols would help the liver.

In animal studies. we also studied hepatoma, animals with liver cancer. It also has support to reduce the severity of the cancer in the liver. So you can generalize the phrase that tocotrienol is hepatotonic, a liver tonic. But well, of course, if you say it like thatm it’s too general and people don’t know what it’s for. So I have to tell people about the clinical studies. The best we have done so far is this huge group of people with fatty liver due to dietary mismanagement and that works on them.

Lindsey:

Was the dosage for those people 600 mg a day?

Barrie Tan, PhD: 

Yeah, for the fatty liver 600 mg. For the type two diabetes anywhere from three to 400 mg in those studies. And for the prediabetic and people with dyslipidemia, it’s about 125 to 250 milligrams. So those are the range I know. We didn’t discuss this. We have about six or so clinical trials in Denmark, of people with cancer and the cancer we studied, two of them are specifically for women. Ovarian cancer, breast cancer, lung and colon cancer. And my colleague in Florida is studying pancreatic cancer. And in that case, we are studying stage four cancer. So as you know, stage four, there are no options available, it is the end stage. So we use the highest dose, which is 900 mg, people take 300 mg for breakfast, lunch and dinner. And in that series of trials, we have the ovarian cancer result back. The audience should remember, this is stage four cancer, which means that there are no more options available. So they were taking Avastin, which means that this is anti-angiogenic. It prevents the tumor from sucking food from the nearby artery. Angiogenesis is the growth of arteries, anti-angiogenesis is you cut the artery off, essentially, you starve the tumor to death. They take chemo for that. And in another group that does the same, they take chemo because it’s the standard of care, plus tocotrienols. That’s it, no other differences. Inoperable, not radiatable like that. And they have in the registry in Denmark already, after six months, then in the group that had Avastin, they are not around anymore. In the group that took the tocotrienols as well, 60% of them survived. In Denmark, this is a woman’s disease, so the nurses are predominantly women, and they really want the study to continue. The principal investigators said, “If we continue to study, what do we compare it with?” The group that they compared with were no longer there. Anyway, for good reason they persisted and they were able to, and I’m glad they did. They persisted the study for four times longer into 24 months, two years. And even after two years, 25% are living. So that’s a remarkable thing I consider.

We are still hopeful that the tocotrienol would work on cancer, but I don’t think I’ll have a prayer to ask the FDA for any claim. Maybe under the Compassionate Care Act of United States passed by Congress. When there are no options available, then the FDA may allow its usage. I don’t know if we have the wherewithal and financial muscle power at FDA, but we’re willing and have the will to complete the study. And then let people read the study. So hopefully, in another year or two, if you still remember me, you can call me, “Dr. Tan, have you completed the study, I’d like to find out more on that.” At the end of the day, I am as fascinated and as touched by this as an audience listening to this would be. I believe that it is this powerful because it is uniquely tocotrienols and it’s the most potent Vitamin E I have ever put my hands on.

In the end, and as I told you in the story earlier, I didn’t even go to South America to look for this. I was looking for something else. And I consider this spiritual to me. If you look at me, I’m Asian, I’m supposed to go to Asia and look for this thing. And then I cannot speak a word of Spanish. And then everything is an oddity, but then this meant to me when I get to this part of the Amazonia, other people could have discovered it, but they didn’t. They weren’t curious enough to look. I was curious enough to look. And I’m not supposed to be there. I’m supposed to be in all these other wonderful places in Asia. But that was not where I found it. I showed you the picture. I was in Peru. And I cannot speak – I’m sure you speak a lot more Spanish than I do. I do speak it, yes. That’s amazing.

Lindsey:

So you mentioned dyslipidemia, and I’m curious, do tocotrienols have any impact on Apolipoprotein A?

Barrie Tan, PhD: 

We only did a study early on. It did drop the Lp(a) a little bit, but it’s not dramatic. On the whole cardiovascular emphasis, I should bear out so that you will know where it works better than others. It consistently dropped triglycerides. That’s a good thing. I’m going to give you a teaching moment here. Before people become diabetic when they’re prediabetic, their triglycerides are high, but the sugar is normal high, but still normal. The person who discovered metabolic syndrome, he call it syndrome X before, and that was a professor Gerald Reaven, you can Google, he gave talks. He is a retired Stanford endocrinologist and passed away now. I remember one time, I caught him when he finished his talk on the run to catch his flight. So he was a little bit irritated that I stopped him as he was walking out. I said, “Just tell me how to put my hand around this metabolic syndrome thing.” He said one sentence, and then he left like that. He said, “Dr. Tan, 10 hypertriglyceridemia always precedes hyperglycemia.” I never forgot it. So, in other words, before people have high sugar, they have high triglycerides. So therefore, if the triglycerides dropped, that’s a very good sign, and then the LDL drops. Most of the LDL that dropped are the dense LDL, not the buoyant LDL, but in LP(a), we didn’t study that in serious depth. We also studied oxidized LDL, because oxidized LDL is atherogenic. And then tocotrienols is a very powerful antioxidant. So not surprisingly, the LDL stays LDL and does not get oxidized. So we were thrilled to see that as well. So pretty much that is the group. Oh, the HDL did increase, not by a lot. It’s very difficult to increased HDL except when you exercise and the HDL increased typically about 5% better than the other direction. When people take a lot of carbohydrates, the HDL drops. And when you exercise the HDL increases, we noticed that tocotrienols, the HDL increases, not dramatic, by 5%, consistently, we see this.

Lindsey: 

Okay, so I know that soluble vitamins do build up in the body. So I’m wondering if you can reach harmful or excessive levels of tocotrienols?

Barrie Tan, PhD: 

To the best of our knowledge? No, because of the 15 to 20 clinical trials we study, the short one is about two to three months. And the long one is about a year, we didn’t see that. Like this fat delivery study, we asked the physician please to report any unbecoming side effects. They reported and they did not see any liver enzymes go up, no kidney function was compromised, nothing like that, that they saw. We didn’t see that at all. By the way, right now, the study in Texas is of men and women who are obese. So we were able to get an IRB, Institutional Review Board to approve. We found this in animals all the time. There when you take tocotrienol because they’re lipid soluble, they are deposited into fatty tissues like vitamin D or K. So we knew that in the animal. So this is a first study, where we have biopsies of the adipose tissue. And then so we will be able to measure how much storage of the tocotrienol is in the adipose tissue in this obesity study. So the obesity study will also be complete by the end of next year.

Lindsey: 

Okay, and is it important to divide up the dosage that you take each day? Or can you take it all at once?

Barrie Tan, PhD: 

It’s important if you can take tocotrienol up to about 300 milligram and after that, if you need to take more than that, you divide it, which is the classic example in the Kansas study. They take 900 mg at 300 mg soft gel for breakfast, lunch and dinner to get the 900 mg. And indeed, in the fatty liver study they take two 300 mg with lunch and dinner. And notice I always say with a meal, they’re lipid soluble so you shouldn’t take it with on an empty stomach like that. And then for studies that only require 100 to 200mg, they can take all of it at one time. Do not take more than 300 mg.

Lindsey: 

Okay, so I use some of the typical functional medicine lab tests with my clients like the Genova NutrEval or the Metabolomix. And they only show tocopherol levels on those tests. So can you infer anything about tocotrienol status from tocopherol levels?

Barrie Tan, PhD: 

No, you cannot. On tocopherols, they readily do that. And I know that had made the tocopherol story last as long as it did, because of the alpha tocopherol transport protein. Frequently when people take bloodwork because they’re looking for lipid profile for cholesterol in a fasting stage. And then it’s about 12 hours overnight fast. Then they look for vitamin E. If you asked for a blood work for vitamin E, besides alpha tocopheral like tocotrienol, in 12 hours, you’re not going to see any tocotrienol, even if they take it with the dinner about 10-12 hours last night before. On that one, it also has a story too. We did that 20 years ago and we found out that there were no tocotrienols in the fasting blood 12 hours after and, the research professor said, “See, the tocotrienol is not absorbed, it’s useless.” It nearly got thrown away, the baby with the bathwater. So then I said, “Wait a minute, you cannot say that, because the blood is only a snapshot on that day. Not that in the blood is no good based on a snapshot.”

So I have to go back to animal study. And in the animal study, this is it. In the cholesterol thing, because of the alpha tocopherol, let’s say if you think of it 2, 3, 4- 10 hours like that, the alpha tocopherol will go up like this. But with the tocotrienol let’s say this is five hours. It goes up for five hours, and then it quickly goes down six, eight hours. So if you have an overnight fast, it’s almost zero. First we showed this an animal and we showed this in humans. For me, it is as painful as it is heartwarming, we actually did the study just to show the pharmacokinetic at five hours, and then it dropped back like that. So why did it drop? It doesn’t have a transport protein, and when it dropped back, it was not picked up. It has already delivered to the organ. But the alpha tocopherols kept being in the blood. So therefore, as a clinician, if you say that it is in the blood, therefore it is absorbed, believe that but only to a certain extent.

Many things are not shown in the blood. It’s already been deposited into the organ, or if it’s deposited in the organ, it is not going to spool and continue to be in the blood. We found that we have consistently found that in all the different organs like I expressed in the liver, and when in animals, you can excise all the tissue, we see them all over in the brain, in the eye and in the other organs. Each person with 130 to 160 pound weight, has 38 trillion cells about 5000 times the population of the Earth. Each one of them is like a cell, say like a bean shape and has a cell wall. And most of the fat in the body is in the cell membrane. And the tocotrienol goes to the cell membrane and the fattier the organ is the more tocotrienol would be there. So you would expect that the tocotrienol would be found in your brain, in your liver, in your lung and in all fatty tissues, of course in your adipose tissue. Of course in people who said well, “How do you know that?” We know this because they work to kill the cancer in those tissues, but we cannot poke and get a biopsy because humans are not animals. In the fatty liver study, we were not allow to do biopsies. It’s a luxury we cannot have, however; if the person has cirrhosis, has liver cancer or Hep C,  well that’s different, so they’ll do a biopsy.

The closest and the first ever we have this is with the obesity study. And for that we are only allowed to have biopsies of the adipose tissue where the love handle is. It is minimally invasive, but otherwise we are not allowed to do that. So therefore, in that case, it is legitimate to study it from the animal. We did have one study, it is a cadaver study and it was from that that we found out the liver thing. A lot of these are story findings. This professor at Ohio State got a US government grant to study tocotrienols in the brain. He was going to get a $5 million grant, but NIH told him, you have to show us before we give you the 5 million bucks to do your study that the tocotrienol is in all the different tissues and he said he was drawing a blank. How am I going to show him that the tocotrienol is in all the tissues? The reason NIH asked that was because they did not see it in the blood. That was the reason. so he had a problem. He didn’t know how to deliver to the government. And then the university was so creative. He said, “We have end stage liver failure patients and if they are on a liver transplant list and waiting, they may wait in vain and they may not get the transplant and then they die.” So if they give consent to take the tocotrienols and if and when they die, and they allowed their organs for human research, then you are good. So he did, he gave it to give it to the 20 or so patients, half of them passed away. That’s when he showed that the tocotrienols were found in the brain, in the eye, in the heart, in the lung, everywhere. So he’s got his money. A side note was half of the patients improved. Remember, he was doing this to show what he needed to get the grant for the brain study.

It was because of that that we decided to do a study on fatty liver. The study was, just show me that the tocotrienols go to different organs. He did! He got his money. But he published a study in the Journal of Nutrition, then he did, and we did. And so now, because he was asked by the US government to show that is found in different organs, now we’re able to find that, indeed, it even helped people with fatty liver. So sometime, findings are not a straight path. But it did lead to a good path. So that’s a blessing. So it did not come from me, Lindsey, so I cannot make the claim. I’m thankful that that professor did it. So we took the the cue from that and decided to engage in clinical studies.

Lindsey: 

That’s awesome. So we’re kind of running out of time, but I want to get to GG or geranylgeraniol? So I know you’ve done research on that, and that it might have some relationship to gut health. So can you tell me about that?

Barrie Tan, PhD: 

GG is an endogenous nutrient, which means your body makes it. I know that the body makes GG for at least three reasons, probably more. The body makes GG to make the first two easier. Behind me, that’s a molecule of GG here, and the other molecule is Coenzyme Q10. So GG is used in the human body for the synthesis of CoQ10. So everything you know about CoQ10, which I don’t have time to explain, you need GG, otherwise, you cannot make CoQ10 in the body. So second, GG is required in the body for making MK4. Everybody in our industry knows the gut fermentation makes MK7 so you can read everything about MK7, and other menaquinones using vitamin K. But I wanted to change the audience and your understanding. In the colon our body makes MK7 and other MKs. That is to make the good bugs go up and the bad bugs go down so that your gut is in a good place. But when people push the idea of making menaquinones remember, when menaquinone 7 is made in the gut, they are not absorbed. Absorption of nutrients is in the small intestine. So when you make it in the colon, it’s in the process of making poop. It’s excretory material through the rectum. So only water is absorbed back and forth like that. I’m saying that GG helps the good bugs to grow because they’re feeding material for the bugs to grow into. So they are growing more like a prebiotic.

By the way, another time, if you send me an email, we can send you the study: tocotrienols work in people with Crohn’s disease and inflammatory bowel syndrome. Maybe you should have me for another interview where I just talk about the colon. This one is more a general health. But for the GG PPs, the GG goes in the body and makes MK4. And the last part is, about 30 to 40% of our body weight is skeletal muscle. Skeletal muscle cannot be synthesized without GG. We need GG for making skeletal muscle. Not surprisingly, as we age we have sarcopenia and loss of muscle mass. And in the very specific instance, and I’m sure your audience will know this, many people take statin drugs to lower cholesterol. The same pathway to lower cholesterol, just right below it is GG. So therefore when you inhibit cholesterol, it’s obligatory, you will inhibit GG and the inhibition of GG is the reason why when people take statins they have low CoQ10. Now, did I connect the dots? Because you inhibit cholesterol synthesis, GG drops, and when GG drops, CoQ10 drops. So CoQ10 did not drop just because they took statins. CoQ10 drops when people take statins, it’s because there isn’t enough GG that statins inhibit and therefore CoQ10 drops. So in other words, if your patient takes statins, if you measure CoQ10 and the CoQ10 drops, it is very likely that the GG has dropped because GG is required for the synthesis of CoQ10.

And of course also MK4 and MK4’s story is very simple. It will affect the bone health process, the porosity, it would also litter the calcium in places you don’t want it to be like calcified arteries, kidney stones and gallstones. So that’s a very short story about the GG piece, it’s a very powerful biochemical. And I’m only talking about it today because humbly, on the same plant that I extract tocotrienols from, after I removed the tocotrienols and color, I still had some some chemical there. It looks yellowish like corn oil when extracted  and studied it. And would you believe it? It is GG. So I’m blessed, you know? So this particular plant is an ancient plant in South America. It yielded the secret of tocotrienol, which I explained to you and now further yielded the GG, which the plant makes for making all kinds of things. For the human, it makes the three things I mentioned to you.

Lindsey: 

Would GG then be something that’s helpful for people who have already calcified arteries?

Barrie Tan, PhD: 

Yes, we are hoping to do a study now. Currently, our two studies we are doing: the main one we are doing is people who are on statins, who are under a cardiologist’s care and have myopathy. And if they take a GG, it it would mitigate the myopahty on those on statins. And so it’s a muscle type question at this point. And then we’re hoping to do some exercise sign on the muscle thing. And someday we also will get to the sarcopenia on the elderly population, we hope to get into those areas. And we hope also to study MK4; we believe the calcification is the MK4 piece. When the body does not have enough MK4, the calcium is not shuttled to the bone. You need MK4  for the shuttle to the bone and not leave it in the artery nor the gallbladder nor the kidney. So we are now working to see how we can conduct a study to do that. It is so exciting. I’m supposed to retire after the tocotrienols. And then I fumble on this GG. And GG is very exciting.

I know that the time is up, I want to tell you one thing. Please allow me, it will only take less than a minute. GG is found in the plant. It is the last common step that the plant and the animal share. The plant and animal are vastly different. They need green chlorophyll to photosynthesize. We need heme red to make oxygen, one needs carbon dioxide the other one needs oxygen. Like do you know that tonight when you go home and then you eat your food, your vegetables, you see green, you think GG. Without GG there’s no chlorophyll. And then when you see your color, your beta carotene, your lycopene, your astaxanthin, your lutein, everything, all this beautiful color, you have to think GG. Without GG, there will be no cartenoids. So now I feel very spiritual that I had this finding. GG is the last common step between these two. In the plant, it is essential. The plant cannot survive without GG. In the human, I just told you the three things that are essential. So I’m just thinking, wow, this GG is really cool. It is really an endogenous nutrient. And even if you take the statin thing away, when we grow old, why do we have low energy, and then we don’t make enough CoQ10. But nobody told me we don’t make enough CoQ10 because we don’t make enough GG SBH. Oh that’s an important thing. And we have a calcified artery because we don’t make enough GG and it’s unable to make MK4. And then don’t quickly jump onto MK7. They are several menaquinones, but the only menaquinone that is made in the human body is MK4 using GG, not the other menaquinones. The other menaquinones are made in the gut however, but they’re not absorbed.

Lindsey: 

So would you be an advocate of the MK4 form of vitamin K, as opposed to the MK7?

Barrie Tan, PhD: 

That is correct. I am a pro that; not for pushing any people to buy my GG. I’m saying that in true honesty. If our body makes MK4 to the exclusion of all the other MKs, don’t you think we should take notice? You can Google, do that. If not, you send me an email, I will send you all things. I hope the Japanese scientists and the scientists in the world who figured this out, I hope that they are nominated for the Nobel Prize. This is actually a classic vitamin thing. They deserve a Nobel Prize. I don’t deserve. I’m lucky that they told me this. And then I’m bearing these things out to people. If you Google menaquinone 4, it’s the only menaquinone made in 25 to 30 organs. You will never find an organ in the human body that makes MK7 or 9 or 11 or 13. Those menaquinones are made by the bacteria in the colon. Now in the colon however, you want them to be made, so the good bugs go up and the bad bugs are controled. That you want. So I don’t want to confuse that. That’s a good place, but when they make them, they’re not reabsorbed therere, only water is absorbed so that you either have diarrhea or constipation, you know, at that stage. But MK4 depends on vitamin K1 being absorbed and then the tail is cut off. The ring, which is on your dark green vegetables, go in and look for 25 to 30 organs, look for GG endogenous, stitch it on and when they do, that’s your MK4. I’m giving you it as simple as I possibly can. And then if you Google it, you’ll find a Japanese scientist studying this.

Lindsey: 

Okay, well now I know I should be recommending the vitamin D/K MK4 supplements not the MK7.

Barrie Tan, PhD: 

Yes. And then if you want to know of a company to do that, Designs for Health, they are a very good company. I think their product is called Tri-K. So they have three: vitamin D/GG, they have GG in it, and then vitamin MK4, I forgot. So if you just go to Designs for Health Tri-K.

Lindsey: 

Yeah, I have a dispensary. I’ll put a link to it and people can go in there and I’ll put in  my discount code (HDH15OFF) for the dispensary in the show notes.

Barrie Tan, PhD: 

Wow, thank you Lindsey! Bless you and bless your all your listeners! Hopefully in another year from now when more of my clinical studies come out, you can have another interview of me particularly more specific on the colon health thing. And also on the other general overall health of the people. By then I will have more clinical trials completed.

Lindsey: 

I’d love to. So briefly, can you just tell me about the supplements that you have that has the tocotrienols and the GG?

Barrie Tan, PhD: 

Okay, you mean who sells them? Designs for Health as I mentioned, AC Grace, Allergy Research Group and then there are many people sell them on the internet. If you go to my website, American River Nutrition, and you say  buying tocotrienols; usually people say you can buy from me. We don’t sell the finished product, so we’ll list all the companies that use ours. If you want to be sure that they come from us and not from other people, if it’s referring to GG, it’s called GG Gold, and if it’s annatto tocotrienols, it will be Delta Gold, because the main component is delta tocotrienol. We call it Delta Gold.  We also make a product which is CoQ10 and  GG. We call it DuoQuinol, it’s a play on the word. And then some companies out there sell it. So make sure that at the back of the bottle it will say DuoQuinol, GG Gold or Delta Gold, you will know it is from us. And we make this product in the United States of America, right here in Massachusetts.

Lindsey: 

So the supplements sold through Designs for Health are sourced through your stuff.

Barrie Tan, PhD: 

Yes, they are. They validated us to the nth degree and then we worked with them and we are pleased that they did a thorough job. They came, they looked, they did definitely, and then we’re also FDA approved, GRAS, kosher, halal and the whole works.

Lindsey: 

Awesome. And then listeners can find you at BarrieTan.com?

Barrie Tan, PhD: 

And if you want the book, BarrieTan.com/book, otherwise, if you lost that track, just simply type American River Nutrition, it will lead you there.

Lindsey: 

And I’ll have these links in the show notes so they should be able to find them quite easily. Well, thank you so much. This was awesome. I love your stories and I’ll definitely have you back on and we’d love to hear more about Crohn’s and colitis and the outcomes of your studies.

Barrie Tan, PhD: 

Thank you so much.

If you’re struggling with dysbiosis, diarrhea, constipation, leaky gut, candida, IBS, IBD, or other gut health or all over body problems, you’re welcome to set up a free, 30-minute breakthrough session with me (Lindsey). We’ll talk about what you’ve been going through and I’ll tell you about my 3- and 5- appointment health coaching programs in which I recommend lab tests, educate you on what the results mean and the protocols used by doctors to fix the problems revealed. Or if you’re ready to jump in right away or can just afford one appointment at a time, you can set up an 1-hour consultation with me.

I got this recipe orally from Doña Carmen, my landlady when I lived in Costa Rica. Hence no specific amounts of things.

Ingredients for Broth
onion
red bell pepper
garlic
butter
celery
thyme
oregano
tomato sauce – roughly 4 oz.
a bay leaf
salt
white wine
1 or 2 chicken breasts

Cut up a small quantity of the above ingredients and put in 3-4 cups of water and cook with chicken. Take out chicken when cooked, and then strain the broth, throwing out all the spices, etc. Shred chicken.

Ingredients
1 tbsp. olive or avocado oil
1 tsp. butter
2 cups chicken broth (above)
1 cup frozen peas
2 cups cooked rice (cooked hard, with little water)
1/2 red pepper, cut in strips and then thirds
1-2 tsp. achiote paste (annatto seed paste – find in Latin American food stores)

Heat oil and butter on medium. Add broth for 4 minutes. Turn to medium low then add achiote, mix, then rice, and mix. Add chicken and red pepper, cook until broth is absorbed, turning frequently so the bottom doesn’t burn. Add peas at the end and cook until warm, turning frequently.

Ingredients
A big package of chicken-whichever kind you like (with bones)
3 cloves of garlic, crushed
1 tsp. salt
4 oz. tomato sauce
1/2 tsp. chili powder
1/2 tsp. achiote (annatto seed paste, find in Latin American food stores)

Skin the chicken. Put it in a pot with about a cup of water, the garlic, the salt, the achiote and the chili powder. Cook it on a low flame for an hour, or until chicken is done. Take out the chicken and then strain the juice in the pan (save it!) to remove the garlic. Throw out the garlic. Combine the juice from the pan with the tomato sauce and add the chicken to the sauce. Heat up the chicken and sauce for 5 minutes and serve over rice.

Preparation time: 15 minutes
Cooking time: 1 hour

Adapted from episode 88 of The Perfect Stool podcast and edited for readability with Shaina Cahill, PhD, neuroscientist and Director of Medical Communications and Affairs at Novel Biome.

Lindsey:

So why don’t you start by telling us about Novel Biome and the work you’re doing there with fecal microbiota transplants?

Shaina Cahill, PhD:

Yeah, so at Novel Biome, we focus on providing high quality, medically-supervised fecal microbiota transplantation (FMT). Our focus is specifically on children or adults with autism spectrum disorder though we do treat people outside of that. Adults that have other conditions that can be helped with FMT. We have four treatment locations in Hungary, Panama, Mexico and Australia. We’ve expanded these to try to reduce the stress and burden it is to try to access this level of treatment. We’ve been around since 2019, with a focus and being Novel Biome. And this came about – two studies were published in 2017, and 2019, by Dr. James Adams, his group out of Arizona State University.

Lindsey:

That we’ve had on the podcast twice.

Shaina Cahill, PhD:

Yeah. And so his work, I think, really stimulated more interest in the possibilities of FMT with autism. And so parents started to reach out about how FMT might be a good fit for their children. And that has just expanded from there. And we’ve focused in on on ASD, because we think that the research to date has been so valuable, but as well, children with autism spectrum disorder are three times more likely to have GI issues. These GI issues really impact quality of life and there seems to be some correlation between the severity of GI symptoms and the severity of ASD-related behaviors. And so there’s a good groundwork of research that’s been around for a long time tying gastrointestinal issues to children with autism. While this research on FMT is new, there’s been an understanding that there is a GI component for not all children with autism, but a good proportion of children with autism. So that’s what led us to do what we do.

Lindsey:

Yeah. And so, Dr. Klopp is from Canada originally?

Shaina Cahill, PhD: 

Yes.

Lindsey:

Where’s your clinic there?

Shaina Cahill, PhD:

We don’t treat in Canada. In Canada, we’re a biomanufacturing company for export and working with Health Canada. Health Canada doesn’t want FMT to be a treatment that’s accessible right now to Canadians, so when working with them, we don’t advertise. We don’t treat Canadians and our website is not even accessible in Canada. We primarily just work as a biomanufacturer and that’s in accordance and following all the rules with Health Canada. And they’ve evaluated and looked at everything and we’re working towards getting a drug establishment license, which then further solidifies our export processes as a drug as well.

Lindsey:

And then your clinic in Mexico – that’s in Tijuana, right?

Shaina Cahill, PhD:

No, it’s in Rosalia.

Lindsey:

Is it near California though?

Shaina Cahill, PhD: 

Yeah, so it’s like driving distance from the US border, but that’s our closest, I guess, to the US site and that one’s been around for the longest. That was our first site and then we’ve kind of expanded from there working with clinics that have the capabilities and the understanding of FMT. We supply product and a protocol for them, and they provide the treatment there.

Lindsey:

And so why the focus on autism in particular? Does Dr. Klopp have any particular relationship with that or was it more just because of the patients asking about it?

Shaina Cahill, PhD: 

It’s the relationship with the patients asking, as well as having a good groundwork for why FMT would work. The research today has been really good, and then that understanding of those GI symptoms, those are there. And so we know that there’s a good groundwork of support for why this would work.

Lindsey:

And what kind of GI issues do children with autism typically show?

Shaina Cahill, PhD:

Kind of runs the gamut. A lot of the major ones are a mixture of constipation and diarrhea, which oppose each other, but those tend to be the two. Bloating and abdominal pain seem to be the ones that we see the most in the literature. Those are the consistent ones that come up.

Lindsey:

And these aren’t just cases of SIBO that could be treated in a different way, or do you do deal with other potential treatments prior to going to FMT?

Shaina Cahill, PhD: 

Yeah, so part of our protocol starts with a personalized pretreatment that’s done by a physician’s assistant. They go through basically what’s currently being treated, what tests have been done, what other tests should be done and what types of medication for before going into FTM. Sometimes we’ll find out that there are larger mold issues and things like this, and then we’ll hold off on FMT get all of those treatments done, so that the gut is ready to take on FMT. That’s a case by case and every case is different. So we make sure that we tackle any issues that could be solved before going into FMT.

Lindsey:

Okay, And so what percentage of your practice would you say is children with autism versus other issues?

Shaina Cahill, PhD:

That’s a good question. I would say probably 90% is autism and most of those are going to be children with autism, not to say that children with autism are only coming for autism. So we also see, some parents are really highlighting those gastrointestinal issues, or IBS or IBD, as well as, seeing that their child also has autism. It’s not always just that parents come in, they’re like, “We have an autistic child, we think an FMT will help.” It’s often that, well, we have these like gastrointestinal issues that are causing a lot of issues. We’d like to tackle that and if we see outcomes with autistic-related behaviors, that’s also great. What we try to instill is that the first outcome is always going to be GI, but we see these secondary outcomes with autistic-related behaviors. So it’s not that this is specifically a treatment for autism, it’s tackling one of the symptoms, which seems to be GI, which then leads to the secondary changes, which we don’t understand at this point. The research is not there to understand why these changes are happening, but it is showing that there’s a relationship between the two.

Lindsey:

Well, we can get more into the results in a minute, but first, I want to ask about your donors. So who are your donors?

Shaina Cahill, PhD: 

So we have really stringent donor screening characteristics that we look for. There are published standards. There’s about nine of them that are out right now and what we do is we look at what those initial screenings are. And then we have our own subset that we also look at on top of that. We’re looking for all of our donors not having taken antibiotics in their whole life, having been vaginally born and breastfed. And we know these things are the pillars of creating a stable gut microbiome from the beginning. And then of course, we’re looking at their diets, as well as their exercise habits. We look at a wide variety of both in them and in their family history of any disorders that we think could be or might soon be understood to be tied to the gut microbiome, to try to reduce any transfer. So we screen our donors, and that leaves us with very few donors that we can even use and then outside of that their blood and stool is tested. That’s done regularly every three months to make sure that there’s nothing there. And so, like everywhere, we find donors that meet our requirements, and we use them as long as they’re willing to donate.

Lindsey:

Is there a an upper limit for age with your donors?

Shaina Cahill, PhD: 

Right now, we don’t have any donors over the age of 30. I mean, right now, in the research, they’re saying there shouldn’t be huge shifts in the gut microbiome until somewhere in the 60s, 70s range, but most of the published cut offs are around 60. And we want to keep ours under that because we do know that there are changes and not just changes in the gut microbiome, but changes in how people live as they get older, which then impact that microbiome. So we’re trying to stay on the cusp of not having any of those issues. So right now, we don’t have anyone over the age of 30.

Lindsey:

Is that the exclusion age or is that just by chance?

Shaina Cahill, PhD:

By chance. Right now, our exclusion age – in our written documents, I think is 40. So that’s the same range, but we just want to ensure because we know that age impacts it. We’re still really understanding that and when that shift happens, There’s a whole bunch of issues in the aging gut microbiome research that I could go on for days about. So I think we’re just trying to stay on the cusp of what we know for sure, versus getting into ages where there might be impacts. With FMT, the more you can control what is going on with your donors, the better, because we want to ensure what we’re giving patients is consistent and safe. And so the more we can control what the donor is going to pass on, the better it is for the patients.

Lindsey:

And do you allow your patients to see the donor screening questionnaire that you use with their donors?

Shaina Cahill, PhD: 

Yeah, so any patient or anybody that wants to kind of understand that, we can give that Anyone that goes through treatment can see the reports of the blood and stool screening and stuff like that from the donors. But that just we’d have to be somewhat mindful, because it’s their health records. So we can give a general understanding of what the donors have that they’ve passed all of these screenings, but we can’t give everybody “Here are these people, this is where they live, this is everything they do,” because we also do protect the donors themselves. So there is some information we can provide and there’s some information we just can’t provide, but we try to be as transparent as possible, where privacy allows us. Our donor screening and all that stuff is something that is readily available for anyone that asks. It’s not on our website, because it’s a very long –

Lindsey:

Could it be something that  I could share with my audience? Would you
be willing to –

Shaina Cahill, PhD:

Yeah, I can send the questionnaire to you. It’s a couple pages long, but yeah, that’s easy enough.

Lindsey:

I can post that in my show notes.

Shaina Cahill, PhD: 

Yeah

Lindsey:

Cool. Can your patients see the pictures of the stool prior to processing?

Shaina Cahill, PhD:

I can’t guarantee you that anyone’s ever asked. We use the Bristol Stool Chart and  there’s a cut off where if stool don’t fall in these two categories, we don’t use it.

Lindsey:

Three and four?

Shaina Cahill, PhD:

Yes, but outside of that, that’s all there is. I don’t know if we take pictures of it. We have a lab manager who does all of those things. But I highly doubt –

Lindsey:

But if someone asked they might be able to?

Shaina Cahill, PhD:

Yeah, I think if someone really needed to, but I think what it’s like is: this is the categories they fall into and, and anything that falls out of that is always documented. Of course, that donor is not used and then we categorize that donor until they’re back into that time period and figure out what could have happened, as well. So that we want to make sure we’re only using the best and so that’s not part of my job, but part of hers.

Lindsey:

Do patients get stool pretty much from one donor or is it mixed together with multiple donors?

Shaina Cahill, PhD:

We usually use at least two donors for patients. And we just want to make sure that the goal here is that like, it’s diversity, ensuring that you get everything you can by using two donors. We actually suggest people rotate back and forth between what donor they’re taking, so that we can get the best benefits. There’s some disagreement and some agreement about using multiple donors versus one. But most of what we’ve read in the literature seems to support the use is there’s a benefit to having multiple donors versus just a single donor. So we’re hedging our bets with that.

Lindsey:

And how do you process your stool for transplant?

Shaina Cahill, PhD:

That would be a good question for our lab manager. I’ve toured her lab, but I have not watched her process anything because she’s very picky about cleanliness and who’s around when she’s doing stuff, which I appreciate wholeheartedly, but that would be something that she would know more about than I do.

Lindsey:

Well, maybe you could ask her and I could just put a paragraph in the show notes afterwards about what the process is?

Shaina Cahill, PhD:

Yeah, we have standardized procedures, so I don’t think it’d be hard for her to pull, but that’s not something I know anything about that off the top of my head.

Lindsey:

And so what is your protocol for preparing the recipient for the transplant? Do they take antibiotics?

Shaina Cahill, PhD: 

Yeah most of the time, everyone is going to take an antibiotic, but it’s individualized. So that’s part of our process.  We work with parents and their children to see what is necessary for them to be prepared. I think we’re as a field starting to really understand the importance of pretreatment. There’s actually been some new studies that have come out and said, “In cases where antibiotics were done before FMT, there’s more success there.” So that is one of our standards, but it’s not consistent and not everybody takes antibiotics. That’s also dependent on the comfort levels and where we think some parents don’t feel comfortable, we use alternatives to antibiotics. It’s completely individualized for the person, so there’s no like, “Here are the three steps we use for everybody.” Because no person fits perfectly into a puzzle every time, we alter it depending on them.

Lindsey:

Okay, so if you didn’t use antibiotics, would you use herbal antimicrobials?

Shaina Cahill, PhD:

From my understanding that has been done. I mean, consistently, it is almost always antibiotics. For people who don’t feel comfortable, we use a natural alternative to an antibiotic.

Lindsey:

Is there a particular antibiotic that you prefer?

Shaina Cahill, PhD:

I think it’s normally vancomycin, but I can’t be 100% sure.

Lindsey:

That’s what I’ve heard from I think, Dr. Adams.

Shaina Cahill, PhD:

Yeah.

Lindsey:

Okay and how long is the course of treatment?

Shaina Cahill, PhD:

Our protocol, we do a two-day, high-dose, and that’s going to be at one of our treatment centers. The total protocol is 16 weeks of FMT treatment.

Lindsey:

Daily?

Shaina Cahill, PhD:

Yeah, daily for 16 weeks. We do that, because there seems to be a huge impact on the amount of time that treatment is done. Studies that have done four weeks, versus something like Dr. Adams’ study, which did eight, you see significant improvements. We’ve extended ours and we see more consistent outcomes and we think part of that is because of that kind of extended treatment period.

Lindsey:

And are these all being done by retention enema or are you doing capsules?

Shaina Cahill, PhD:

Yeah, so at our treatment centers, you can do either an enema or loading oral dose, and that depends on the child or the person getting treatment. Some children can’t take capsules, so they will take a retention enema. When they go home, for kids that can take capsules, they’ll continuously take the capsules. Anyone that can’t swallow the capsules, we have an oral powder, which can be mixed with water, juice or milk. They can take it that way versus having to take a capsule.

Lindsey:

Okay, so it’s highly purified the way that Dr. Adams’ stool is – to the point where it doesn’t resemble fecal matter anymore I assume.

Shaina Cahill, PhD: 

Yeah, so it’s odorless, tasteless and colorless.

Lindsey:

Just the bacteria.

Shaina Cahill, PhD: 

Yeah. And so that allows us to provide an at-home version of the treatment for kids that can’t take capsules. And that’s really common in smaller kids. That allows a comfort for that and it’s easy to mix it into something they would normally drink anyways.

Lindsey:

So it’s really just a fancy probiotic pulled from someone’s stool when push comes to shove.

Shaina Cahill, PhD:

It’s an engraftable, I guess. Because it’s a higher diversity, and you’re getting everything.

Lindsey:

Including the anaerobic strains.  Does it have to be refrigerated?

Shaina Cahill, PhD: 

For extended periods. So we suggest four degrees storage, because of what we’ve seen. So far, that’s been done, and we’re doing our own stability studies to get a better understanding, because there hasn’t been a ton done. But when it’s at four degrees, when it’s been partially freeze dried, we know that it’s good for up to about a year. So we suggest keeping it in the fridge and then keeping it at a consistent temperature because those temperature variations can cause some some issues as well. Yeah, and everything that’s in your gut microbiota aren’t bacteria. There’s a whole host of things, right. So you’re
getting all of that and with a probiotic, it tends to be concentrated on a couple of strains. And we know that probiotics don’t engraft. So they’re good while you’re taking them, not good long term. There is a difference. I think because it’s purified and partially freeze dried, you’re looking at a more stable and something that can be used for a longer period of time. So there are differences. And as FMT is coming along, we’re seeing these improvements. Oral capsules weren’t a thing a couple of years ago. That’s really kind of changing what FMT looks like, and its accessibility. But as well now being able to partially or fully freeze dry it, now it’s becoming more shelf stable. The life, the longhood, the longness of it, how you can store it and how it’s able to be stored and then shipped and stored in someone’s house for longer periods of time makes it an easier product to have.

Lindsey:

So is that four degrees a typical – this is Celsius right?

Shaina Cahill, PhD:

Celsius, yes. Standard fridge temperature is the –

Lindsey:

Which is I think somewhere around like 40 degrees Fahrenheit or something like that.

Shaina Cahill, PhD:

Yeah.

Lindsey:

Okay, what gut health conditions, does the research say are most positively impacted by FMT?

Shaina Cahill, PhD:

It’s a wide variety. And we’re still learning. I think the biggest thing to say is, currently, it’s only approved for treating recurrent C Diff.

Lindsey:

In the US. 

Shaina Cahill, PhD:

And the outcomes of that are magical. Because it’s been so safe and consistent, research is growing in other areas. Across the board, we need more randomized clinical trials. We need larger clinical trials and we need more patients to see consistency. I think that’s the first statement to make across the board. For Irritable Bowel Disease, there have been a number of positive studies. While the results aren’t what we’re seeing in C. diff, which is like 90%, it seems to be consistently around somewhere between 30% improvements.

Lindsey:

Irritable bowel syndrome, or inflammatory bowel disease?

Shaina Cahill, PhD:

Irritable bowel disease, and there’s no consistency. There’s been 10 studies done in Crohn’s and –

Lindsey:: 

We’re talking about Crohn’s and Colitis (or inflammatory bowel disease).

Shaina Cahill, PhD:

Yes. And so that’s around about 30%. But because diseases that fall under IBD are inflammatory in nature, and they’re cyclical, I think that’s what we’re seeing in the research. When people aren’t in an inflammatory state, their response is different than when they are. So that’s complicating the research a little bit. There are certain disorders where when you treat will also matter. There’s some really great, new clinical trials coming out for Parkinson’s disease – the stuff that’s been done to D has just been case studies and preclinical, which are promising and I think there’s four clinical trials coming that are currently ongoing for Parkinson’s disease. There’s a couple for MS, multiple sclerosis, Autism Spectrum Disorder, of course, we’re seeing clinical trials and growth and research there. There’s been some research looking at cancers. There are some steps specifically for cancer, but a lot of the research right now is looking at treating side effects of cancer treatments. The biggest beacon we’re seeing is people who are getting stem cell treatments or bone marrow treatments, because of what has to be done to prep the body to get those treatments, they’re actually finding using either FMT or autologous fecal microbiota transplantation, which is using someone’s own stool. They take the stool before they get any of the prep done for the stem cell treatment, and then do the FMT. They actually see that improves both uptake and any issues with graft versus host. But as well, it just makes the process more enjoyable or more easily reduces side effects. IBS is another one that they’re showing studies in, which seems to be a little bit more consistent than IBD, which I think is like 40 to 50% improvement. There’s not a ton of studies. And again, there’s more coming. The clinical trials are growing in this area. But those are kind of the main areas we’re seeing a lot of growth and research.

Lindsey:

Okay, cool. It was a good summary. And so I know that there was some controversy surrounding Dr. Klopp and his use of FMT, so can you can you explain a little bit about what’s going on with that?

Shaina Cahill, PhD: 

Yeah, so we’re still in the midst of it. It’s been going on for too long. It started in 2020, where the main issues came out, and a lot of it was around manufacturing standards, the use of FMT in children with autism spectrum disorder, and advertising. So we’ve completely revamped how we advertise. And that’s something that we’re consistently changing as we enter new countries. We’re working with external help with that, because none of us are marketing people. We’ve been learning about that, as well as in Canada, worked with
Health Canada, decided to not advertise. We don’t treat Canadians so that’s been part of the change, as well, for manufacturing standards. We’ve had Health Canada in. They’ve looked at our procedures, they’ve looked at our laboratory. For us, Health Canada’s the governing health body here, similar to the FDA in the States. We’ve been investigated and cleared of any deviations from acceptable procedures. We have a beautiful and wonderful lab. I am jealous of it. I worked for very long time in labs, and it is very, pretty clean and nice. I wish that’s where I worked previously.

I think that we’re working with governing health bodies, making sure we’re meeting all their requirements. And that’s all we can do. Unfortunately, none of those things have been picked up by the media, but everything else seems to continue to live there. We’ve reevaluated how much information we put out into the public. We didn’t put a lot out there, so we completely revamped our website. We’re more transparent about our donor screening and our screening that we do to blood and stool. We also have really put our time into providing education. What is FMT and why is it important? There’s not a lot out there and some of the research that is out there is really hard to digest. We’ve taken it upon ourselves to try to provide easily-accessible education so people can understand what FMT is, and what we know about it right now. How we’ve decided to tackle the negative attention we’ve gotten, is by evaluating what we were doing and why this could have happened. Our first thought was that while we’ve always been science driven, we weren’t being transparent enough about that. And then when it comes to manufacturing, we’re on the up and up. We’ve been evaluated by everyone that
matters for that and that’s all we can do.

Lindsey:

And I know Dr. Klopp’s credentials were threatened. Has that been resolved?

Shaina Cahill, PhD: 

We’re waiting for for the decision on that.

Lindsey:

He currently still has them.

Shaina Cahill, PhD: 

Yeah, so he’s still a naturopathic doctor.

Lindsey:

Just wanted to make sure. Okay, so I know you were tracking your results internally. Are you tracking them with regard to the particular donors, or just in general?

Shaina Cahill, PhD:

Yes, right now we, internally, we collect a number of measures from our patients. So before, during, and after FMT, to monitor changes what we’re looking at across, we look at stool. We also look at GI symptoms, and then we look at a number of measures specifically associated associated with ASD. We also have a new observational study with Biohm that we’re looking at. The first thing is looking at the gut microbiome of children with autism to get a better understanding of what are the markers and what’s different about their gut microbiome? The second part is, we understand that there is an importance to donor and recipient matching. I think, as the field grows, we’re seeing that more and more so in this study, we’re measuring our donors as well as measuring our patients, but then measuring what the interactions and what the changes are based on how similar or different those gut microbiomes are, and what the outcomes look like. So we’re in the process of collecting data to understand the donor-recipient relationship, as part of our efforts to increase the research and data that exists.

Lindsey:

Have you had positive results or negative results of certain donors that have led you to no longer retain them?

Shaina Cahill, PhD:

No, we haven’t had any donors that we’ve not used. To become a donor is so stringent, I think standards based on what’s been published, about 50 to 80% of people don’t pass the initial screening.  Our screenings are in even higher levels than that, because in a lot of cases, it’s like you haven’t had antibiotics in three to six months. We – just you’ve never had them. And we tend to go to the extremes for a lot of things to ensure that we’re not missing anything. So the number of donors you even get just past that initial screening  s so few and then on top of that their blood and stool is screened and then regularly screened. The likelihood that a donor has something that’s specifically not good is very low. And then we retain our donors as long as possible, because they’re really hard to replace.

Lindsey:

Right? Are they coming in every day? Basically dropping off their samples? And these are all in Canada, right?

Shaina Cahill, PhD: 

Yes. So you have to be close to our site. So we’re in Chilliwack, BC, so they would all be within easy driving distance.

Lindsey:

So let’s get to the kinds of success you’ve seen with FMT and ASD and other conditions.

Shaina Cahill, PhD: 

Yeah, so I’ll focus just on ASD because that’s where we have the most. I don’t like to make conclusions about small things. But we do we know that the process is like, we know that when children take antibiotics, we do see changes in their behaviors and, when you start FMT, there’s always a period of time where you see changes like increases in hyperactivity, increases in some behaviors. We see that basically, once we think that the gut microbiome has started to kind of engraft and become part of the system, you start to see improvements. It varies, but most of our patients say between between the first and the third month, they start to see consistent improvements. in the first couple of weeks, it’s just the change. I think, a mixture of wiping out the first gut microbiome and engrafting the next one, you see a lot of changes. Before you see consistent improvements, we see those going into that one to three month mark. GI symptoms seem to be consistently improved and that’s supported in the research. The ASD-related improvements do vary, but a lot of them are the improvements in eye contact. Improvements in speech seem to be something we see consistently and then consistency is in behaviors. A reduction in stimming behavior and a reduction in aggressive behavior seem to be ones that we see more consistently, but we’re in the process of collecting more consistent data over longer periods of time, so that we can start. Our goal is to publish it so that it’s readily available for people to see, so that we have consistent data points that are done regularly and done by validated measures. We were only originally using one validated measure. We’re now using three and we’re also looking at quality of life changes, which is something we want to have a consistent measure on. These are all things that we’ve added in the last six months, so we’re still collecting data. Because our process takes so long, we have a 16-week treatment period. We’re just now starting to get people through their end of FMT and their follow-up. So we’re a little bit further away from having conclusive statements, but from what we’ve seen previously, and what’s been reported from parents, results are consistent. People do see changes and improvements in their quality of life, but we want to have objective measures across the board, because everybody’s perception of these things is different. We want to make sure that it’s validated.

Lindsey:

How long does that take? And are you also recommending diet changes or supplements? In addition?

Shaina Cahill, PhD:

Yeah, so we do consultations with our physician’s assistant at the beginning, in the middle of FMT and at the end of FMT. That’s used to monitor what changes are happening, answer any questions, but as well as put in place any supplements or anything that should be added to help stabilize that gut microbiome and feed it. We also work with parents by trying to provide them with information around what things in the diet are important, and to make sure that they understand how what you eat feeds that gut microbiome. And so you have to diversify the gut by diversifying the diet and ensure that you’re feeding every aspect of this new bacterial body that’s there. We try to provide them with information and we’re consistently researching what the most important things in the diet are for the gut microbiome. We always suggest you should eat 50 different foods every week. We try to help parents get to that point. Kids with ASD often have a lot of issues with certain specific foods. So what creative ways are there to increase what they’re eating and what foods to focus on first. So that’s all stuff that we provide, as the process goes along and try our best to answer their questions. It ranges from like, “Is this pack of lettuce better than this, because it has more things,” to, “What types of smoothies are better,” to ensure that they have the most support we can give them. It is a huge shift, but the more you can do that, the better that gut microbiome will be. That’s the goal – to make a stable, healthy gut microbiome once it’s been transferred.

Lindsey:

And what supplements do you typically recommend?

Shaina Cahill, PhD:

I cannot tell you off the top of my head, mostly because it’s individualized. I’ve said that before, but it really is like each person, depending on what they were taking before they started. Some people come to us with a very short list. Some people have a very long list of stuff that their children are already taking. And some of those are like, “We have to take some of these off.” Some of them that we add on for other people. So it really depends on each child and where their starting point is and where they end up as they go through the process.

Lindsey:

And is there any case study that you could highlight or any individual child that you could talk about, just to just to get a an idea of what’s going on?

Shaina Cahill, PhD: 

We have done interviews and stuff with parents like what improvements they’ve seen, but it really is dependent on where the children started. We treat children that start as being categorized as mild, as well as being characterized as severe. Those journeys look completely different, because of what’s going to change and what the driving force was. A lot of parents consistently say that they’re able to go about each day easier. Some of the things we talk to parents about at the beginning of their journey, and the first things that start for them is being able to get their child to have their coat on and into the car has now been less of a battle. For some people that’s where it starts and it continues to go forward. Being able to have a conversation, for them to feel like their child understands them and to be able to integrate more easily. For a lot of parents too is that everyone can eat the same food at dinner. And so these are changes that happen throughout the process that make huge impacts for quality of life for both the child and the family. And those continue to go. So it’s not always specifically about different changes in their diet, or in specific ASD-related behaviors like stimming, or eye contact or aggression. It’s also about those changes all coming together to make life easier. And I think that’s what we hear parents talk about the most is just the changes in their day to day lifestyle, and how things have become easier. So I think outside of what you expect to see in changes in ASD-related behaviors and GI symptoms, it’s those changes in quality of life, as well, that a lot of parents talk about.

Lindsey:

And so if somebody is coming to you for something else, like IBD, or IBS, is it a much shorter protocol?

Shaina Cahill, PhD:

From what I understand it’s average is between two to three or two to four months, depending on the person, what their journey looks like and where they’re starting. Our process starts always with a call and you talk to someone on our team, and we get a better understanding of why you think FMT would be a good fit, what your current situation looks like, and  that starts the process of, “Is this a good fit for you or not?” And then you meet with a physician’s assistant to talk about what issues you’re having, what kind of reports you have, from your doctors to see where are we right now and where do we want to be? That determines the length of treatment, and how we approach your pre-treatment and your post-treatment as well.

Lindsey:

And roughly how much does this cost for ASD or for shorter conditions.

Shaina Cahill, PhD: 

So for our ASD protocol, which includes meeting with a physician’s assistant, meeting with a behavioral or clinician who does assessments, we use the CARS assessment, as well as the treatment, and treatment at our sites is $14,300 USD. And then that’s kind of our standard. If you’re coming to us with something else that would be dependent on the length of treatment, and if it would all be at home or if you would be coming to one of the sites as well.

Lindsey:

So it is possible to just do it at home?

Shaina Cahill, PhD: 

Depending on who you’re referred by. We have patients that come to us for C diff and so their gastroenterologist or  their doctor will send us a request form and then we can send out just an at-home treatment for them to do.

Lindsey:

Can you send out at-home treatments for people in the US?

Shaina Cahill, PhD: 

Yeah, so for C Diff, we have done that.

Lindsey:

But not for IBS or IBD?

Shaina Cahill, PhD:

That would be something that you would talk to the team about, because it would depend. For some people, having those loading doses will be a requirement. It would depend on where they are and what works and if at home is the best thing then we work with them and their doctors to ensure that we can get it to them at home.

Lindsey:

But they have to come in via one of your clinics in those various countries.

Shaina Cahill, PhD:

Or they can have their doctor submit a request form for treatment and we can send it directly to them. There’s some flexibility but it would have to come as a request from a physician. That’s the way that we can do it.

Lindsey:

Okay. Because I know that obviously, in the US right now, it’s only FDA approved for recurrent C Diff. I’m curious how that works. Just because if a physician requests it, does it somehow get around that rule?

Shaina Cahill, PhD:

I don’t know. So all of our stuff has been done for C. Diff. I think for all of our secondary patients, it would depend on on their case, and that stuff I don’t know about, because I don’t work directly with patients. I have a PhD, not an MD, so they keep me away from all of the people. But we know we do have cases where, we work with them to try to make sure that the process is something that can be handled, but I’m not sure how it works. And it may be country specific, because for each country, the rules for FMT are different. And we treat globally. So that’s why we always say,  talk to the team, they will figure out where you are, and what the rules are, and then how to kind of approach that.

Lindsey:

Like you might be able to refer them to a doctor in their area?

Shaina Cahill, PhD:

Yeah. And if they’re in a different country where FMT is regulated differently than it is in the US, then the procedure would be different, because it always depends on what the health authority there’s requesting and what the procedures are. So, we treat in the US, but we don’t treat all in Canada, but we have patients in Europe and South America, everywhere. So it’s dependent on where they’re located. I think the procedure depends, and that’s why I always say, the best thing to do is book a call and talk with us. And we can work through all of that, because there is a lot of legality and rules around where you’re located and how treatment can be done. So it’s hard to make a singular statement, I guess. Yeah.

Lindsey:

Is there anything else you would like to share before we finish up?

Shaina Cahill, PhD:

I think that if you have questions about FMT, or if you think FMT might be a good fit for you, book a call and ask questions, and see where it is, because it is something that’s growing, and we’re understanding more and more about it. But I think for every person, it’s going to be different. And our goal is to ensure that you’re informed, and that you have an understanding of what the possibilities are.  I think that’s always the best is to just do your own research. Look at our website, we have a YouTube channel where we make educational videos. You want to get a better understanding of what FMT actually is, or what the gut microbiome is, but then book a call and talk with someone on our team to get an understanding if it is a good fit for you.

Lindsey:

Is there a cost for that initial call?

Shaina Cahill, PhD: 

There’s no cost and you’re not tied into anything. We’re just as likely to say it’s not a good fit for you, because we want to make sure that anyone that’s coming to treatment with us is getting treatment that we think will work or will be a good fit. It may be that maybe it’s not a good fit for you now, or maybe we don’t think that it will be be helpful for the symptoms that you have, just as much as we want to answer your questions for you to be informed about making that decision. So we have that as an open ended so you can you don’t feel locked in, you don’t feel tied up with anything and then you can get an understanding of how it fits for you.

Lindsey:

Okay, awesome. Well, thank you so much for sharing about all this. I’m sure that there’s a lot of people who are curious about it and considering it.

If you’re struggling with dysbiosis, diarrhea, constipation, leaky gut, candida, IBS, IBD, or other gut health or all over body problems, you’re welcome to set up a free, 30-minute breakthrough session with me (Lindsey:). We’ll talk about what you’ve been going through and I’ll tell you about my 3- and 5- appointment health coaching programs in which I recommend lab tests, educate you on what the results mean and the protocols used by doctors to fix the problems revealed. Or if you’re ready to jump in right away or can just afford one appointment at a time, you can set up an 1-hour consultation with me.

Adapted from episode 87 of The Perfect Stool podcast and edited for readability with Dana Kay, Board-Certified Holistic Health and Nutrition Practitioner

Lindsey Parsons

So I know from the intro that you have a child with ADHD. So can I ask you about your personal story and what led you to the holistic approach to ADHD?

Dana Kay

Yeah, definitely. And I think, like most sort of alternative health practitioners, there’s always that story behind their motivation. And there’s no different for myself, believe it or not, I was actually an accountant in a previous life  I plan to continue in that field. If the concerns over my son’s health hadn’t grown, I always dreamt of being a businesswoman in an office and my dream came true. But then my son’s health started to deteriorate. And by the age of two, he’d have these meltdowns just like any other terrible to child but then they sort of didn’t go away, and they seem to get worse and worse, and you just would be at the playground, and you’d have so much energy compared to any other child. And I kind of sort of felt like I was on this emotional roller coaster. I’d be dealing with so much energy, and then we’d have this massive meltdown. And then for an hour, he’d be okay. And then we’d have this massive meltdown again, and it just, it wasn’t really what I imagined parenting to be like. And so I’d I’d asked friends, I talked to teachers in the preschool, and everyone’s like, “Oh, don’t worry, he’s just a boy, he’ll grow out of it.” And so I just kept going along with that. And things started to get worse at age three, age four, and sort of by the time of mid fours, late fours.

That’s when sort of the teachers or the preschool started to notice a bit of a difference. And we went to the pediatrician who referred us to a neuro developmental psychiatrist, and he was diagnosed with ADHD. And we were immediately handed prescription medication. And honestly, between you and me, I was relieved with the diagnosis similar to myself. I’m not a bad mom, this is not my parenting and this is not my fault. There’s actually something that is contributing to what’s going on in our family. And I was excited to fill the prescription medication, bounced into the drugstore, bounce back out, gave it to him. And that was the thinking to myself that that was finally the thing that was going to help us get help for our family. At first things were okay until they weren’t. And we started having these side effects and went back to the doctor and they increased the dose. Then they prescribed another medication to counteract the side effects of the first so he was losing weight, not able to sleep and didn’t want to eat. And then he’d have these mammoth mammoth meltdowns that were worse than before, in the afternoon when he was like coming off that medication. And so it was like, Yeah, okay, he was able to sit still at preschool. But when he got home, it was actually ended up worse than what it was before. And so this sort of continued until my son who was now five was on three very strong medications. And the doctor suggested a fourth medication to counteract the anxiety that had now come up from it. And that’s when I sort of said, doesn’t seem right. And I just couldn’t do it anymore. And this is where sort of my career path completely changed. And back to school, I did my holistic health degree, multiple specific certifications in this particular area. I really learned that medicine wasn’t the only way. I began to learn that ADHD symptoms can be reduced naturally and I learned how food can affect so many aspects of our lives as you have too, Lindsey, and in your story and what you share. Look, today, my son is in middle school. He’s a teenager. He’s thriving. He hasn’t been on meds for years and he’s a straight A student. But right now he does have a B, which is very upset about which but for me, I don’t care. Like the most important thing for me is he’s happy, my family’s happy and we now have that peace and that calm and that balance in our house that I knew that we could get to. Once I learned this, and once I saw the changes that all of this had, on my own family, I really couldn’t keep this information to myself. I didn’t want anyone else to have to go through the struggles and the challenges that I went through. I’ve been lucky enough to have helped over 1000 other families get to the same place as me but just so much quicker, and without as much stress.

Lindsey Parsons 

That’s wonderful. Yeah, So tell me about how diet impacts ADHD and kids.

Dana Kay 

Yeah, so look,  I like to think of diet as the foundation. When children are diagnosed with ADHD, the first course of action that most doctors suggest is medication and many of them don’t mention that altering the diet can significantly reduce ADHD symptoms. This is very much exactly what happened with my son and I started to learn about the effects of gut health – that’s why I love being on this podcast – gut health on ADHD symptoms and how when we heal the gut, ADHD symptoms are reduced or removed completely. That’s why I like not only… I’ll go into the details of why diet does help, but I think that it’s so important that food should be first. Food should come first. I’m not against medication, but it shouldn’t be the first cause of action, not when food can sometimes be even more effective with absolutely no side effects. So if children continue to eat these processed inflammatory foods, like gluten like dairy, and soy which I’ll go into why, those ADHD symptoms are not going to go away, because the foods they are eating are exacerbating the symptoms. So when we take these foods out, they’re so highly inflammatory. And I like to sort of think of it like a bucket, and everyone’s born with this metaphorical bucket. Our goal in life is to keep the load on that bucket low. Some of our kids might have bought been born with stuff in the bucket already.

My son was born given antibiotics straight away, was in the NICU, was on a CPAP machine, wasn’t breastfed there was a lot going on. And so his bucket already had stuff in it. Now, the goal in life is to keep that bucket low. And some of us are really good at emptying that bucket outside of our body because our detoxification pathways are optimized, whereas, others may have some genetic issues, gene mutations in certain areas and they cannot empty that bucket effectively, which happened to my son. And so what happens is, we put this load on the bucket inflammation, and inflammation can come from food, it can come from toxins, it can come from environmental toxins, it can come from medication – which came from my son, and this will load and load will rise up until it gets the bucket gets so full. And if you can’t effectively empty it out or tip over into our body, and our body will be riddled with inflammation. And that’s when symptoms come out. For kids, they might be born with that bucket that has stuff in it already and then they start eating these foods. Now when you’ve got a high bucket, and you start eating other highly inflammatory foods, that load is going to get up very, very quickly. So I get a lot of questions. “Well, why does say gluten, dairy and soy affect one kid but doesn’t affect the other kid, even if they’re in the same family, and I bring it back to that bucket?” Well, that kid’s bucket might be full already and that kid’s detoxification pathways may not be optimized. That’s sort of the way that I look at it. Now, gluten, dairy and soy are the top three inflammatory foods that I think of, and they’re the top three culprits that are driving inflammation in our body and, and these highly inflammatory substances can lead to an immune response. And they lead to increased intestinal permeability or leaky gut. I’m sure your listeners probably know a little bit about leaky gut, am I right?

Lindsey Parsons

Of course.

Dana Kay 

Yes, so they can lead to leaky gut and kids with ADHD are more likely to also have compromised immune systems. So the effects of these substances tend to have a whole greater effect on the body. Now in terms of why do they cause leaky gut, I won’t go into detail about all of them. But I think gluten is probably the number one food that I recommend that all children with ADHD cut out of their diets. Pretty much everyone should not be eating gluten, in my opinion, but we’re talking about kids with ADHD here. Now, gluten is so inflammatory, that even if someone doesn’t have an allergy, it does cause leaky gut. It’s harmful for everyone and that’s because it triggers intestinal permeability in everyone. That refers to sort of the breakdown of the intestinal walls. Now when functioning properly – I don’t know if you want me to go into detail on this if your listeners already know this – but intestinal permeability is the breakdown in the intestinal walls and it allows that water and nutrients to pass through but blocking other things from entering the bloodstream. When there’s that breakdown, it can lead to leaky gut, which basically means the tight junctions in the gut, that are supposed to control what passes through the lining of the intestines. They’re not doing their job very effectively. So they’re allowing toxins and other harmful substances to get through into the bloodstream. When toxic substances get into the bloodstream, the body fights them off and tries to get rid of them, so when something enters the bloodstream that’s not meant to be there, it triggers that inflammatory response as the body seeks to rectify it. Gluten leads to increased intestinal permeability, which leads to leaky gut, which leads to inflammation, which leads to a load on that bucket. And when that bucket is high, it it leads to the symptoms like stomach aches, constipation, brain fog (which is like inattention), hyperactivity, reflux, anger issues, nose or wheezing. I could go on and on,  but a lot of those symptoms correlate with ADHD. By cutting out gluten, parents of children with ADHD are removing one food that significantly contributes to inflammation in their body and the load on that bucket. In my experience, if we remove that, along with those other highly inflammatory foods like dairy and soy, and feed the body with the right things, then ADHD symptoms diminished significantly, and sometimes disappear completely, because they allow the gut to repair. Does that explain it okay?

Lindsey Parsons 

that’s awesome. Yeah, absolutely. So I, as a parent felt at one point that my son was likely gluten intolerant when he was in his middle school years, and I tried to get him to go gluten free. And I only got him to agree to about a two week trial of this. So that was it. I mean, it was just a losing battle, because even if he was, say, restricting it, the best I could get him to agree to was say, you still eat it once a week. And I’m thinking, well, that’s kind of meaningless in the end. So I’m curious whether you had better success. And obviously, your child was younger at the point at which you started doing this. But how in the world do you get these other families to do it?

Dana Kay 

Yeah, look, it is a lot. And that’s why I’ve sort of designed my program, the way that that I have. My son was a lot younger – the younger, the better – because they grow up with it and that’s what they know. With the older kids, it’s a lot harder, and you do need to get a little bit more buy in. But the way that you do it with the older kid is really getting them to understand the feelings in their body and how that affects their body and if they are having that gluten intolerance, and they’re experiencing symptoms, when they stop the gluten, they can actually feel the changes in their body. That’s where you jump on it to try and get that buy in. And so when they do eat something, they would experience the symptoms coming back. I can tell you that I’ve seen it time and time again and so it is really important that you’re constantly having those conversations with the older kids. There are so many challenges that can come up with it. What I tell with families is that it’s not an overnight change. I tried to change everything on day one, I literally took out gluten, dairy, soy, artificial flavors, artificial colors, salty food and sensitivities that were in his food sensitivity panel on day one. Let’s just say I had multiple panic attacks on the floor of my bedroom. That is not what I teach in my program. I always tell families that Rome wasn’t built in a day, transforming their family’s diet won’t be completed in a day either and so it’s okay to take it slowly. When you’ve got an older child, that’s important, because you need to take them along in the journey with you. If you just throw it on them, they’re going to rebound. So it’s okay to take one step at a time. And if that pace that’s doable for you and your life is one change a week or one change every two weeks, then that is okay. Families really need to give themselves permission to take things slow, because it’s not a diet. It’s not a phase. It really is a permanent lifestyle change, but when it becomes part of your lifestyle, it’s second nature. You don’t even think about it anymore. So very much, I think that having support when doing it with a family is key to this. Trying to do it alone is so hard. Take my word for that one. I did it by myself and it was so extremely hard. And so we my program, we’re literally there every single day with families holding their hand step by step, telling them exactly laying out that blueprint for them on what they need to do next. So they don’t need to think about it. When that challenge does come up, which it will, we can help them overcome it because that is our powerhouse. That is what we know best. Having helped over 1000 families, we know what works, we know what doesn’t work. And we know if there is a challenge most likely we’ve dealt with it before.

Lindsey Parsons 

Yeah, so obviously it helps if you have buy in from both parents. I’m curious whether your husband bought into the entire idea of changing the diet because my husband wasn’t bought in at all. Yeah

Dana Kay 

I love this question. No, he wasn’t bought in – probably still not 100% body and either, but you know this wow, this is that’s just the way it is. We’ve seen so many changes but he’s a man of science, as most men are, and also stubborn and I love him. He’s upstairs and I always throw him under the bus. The positives outweigh the negatives. I’ve run into many non believers in my time and I will tell you like it was the science that first made me rethink the direction we were traveling with my son. And same for him. And the fact that we obviously had significant side effects from the medication. But there are so many studies out there to support this. And I think that, really, when you’re trying to convince the unconvinced, you’ve got to hit them with science. I’ve got so many studies out there that just really, really drive at home, that diet is so important. Look, it’s not just about diet. I don’t just teach diet, but it’s diet. It’s detox. It’s lifestyle. It’s reducing toxins. It’s all of that. But I mean, I could list off studies and studies. I don’t know if you want me to but I could I could list off some studies and I think that you hit the unconvinced with the studies. And sometimes mums just need to take it into their own hands. And honestly, that’s what I did at first. I said, Look, this is what I’m doing. Too bad. Come on the journey, or you don’t. I just went forward and did it Aand they they start to come on board when they actually see the changes – and the changes are amazing. And mean the first change that you see with reducing that inflammation in the body, is a reduction in tantrums, a reduction in meltdowns, a reduction in anger, the severity, the length of time, the frequency all reduced. For my son, it was literally within two to three weeks of changing the diet. And honestly, the emotional dysregulation is the hardest thing for a family to deal with, because it’s so loud.

Lindsey Parsons 

Absolutely,

Dana Kay 

It puts a family on hold basically. It’s that roller coaster of emotion. So it’s actually really nice to see that that’s one of the first changes that happen.

Lindsey Parsons 

Absolutely. So, obviously, taking out the bad stuff is necessary, but what about what kids with ADHD did eat more of?

Dana Kay 

Yeah, look, it’s really like the same thing for anyone else. It’s really about not what just to take out. It’s also what to put back in the diet because I always say to people, “Gluten and dairy free is not necessarily healthy.” If you’re gonna replace packaged goods with packaged goods, you’re not gonna get to where you go and sometimes gluten free can actually be worse than the non gluten free. As far as what to weight, my best tip is to focus on whole nutritious, fresh fruits and veggies, grass fed animal proteins, such as meat, poultry, seafood, eggs and also plenty of healthy fats like avocado, coconut and olive oil –  really avoiding those refined oils. You also want to be drinking plenty of spring water. I mean, the numbers of families that come to me whose kids, the only thing they drink is juice, soda and milk, they you take the juice away, you take the milk away and the soda away and there are different kid and you don’t even need to make the dietary changes, but you do for their health. By drinking plenty of spring water to avoid harmful chemicals that are in some waters, but also, obviously water helps detox the body and remove the toxins that are already there. I find that all of these foods really provide us with the nutrients we needs so we can function at our best along with our kids. When buying ingredients, my rule of thumb is (ingredients in terms of like a package food), “If there isn’t something that you can’t pronounce, put it back,.” If you don’t know what it is your body is not going to know what it is. Try to stick with an ingredient list that’s less than five or six on there. The more ingredients, the more worry that there’s going to be those other things in there as well.

Lindsey Parsons 

Right. So you mentioned detoxification a couple times. I’m curious, are you testing kids in your practice? With with what kinds of tests might you use to check the detoxification? Yeah,

Dana Kay 

Look, I think functional lab testing definitely plays a role. I would like to say that about 50% of the families I work with, we just do sort of the diet lifestyle, like detoxification, and reducing toxic exposure and they get to where they need to go without doing lab testing, which is amazing. What that tells me is probably 50% of the kids that are diagnosed with ADHD are not in fact, having ADHD. It’s probably a byproduct of what’s going on in their body. You apply that to the 6 million children in the US today that have been diagnosed with ADHD. That’s probably 3 million children that have been wrongly diagnosed, but the other 50%. Yes, it helps dramatically, but there’s something deeper going on in their body that we need to check out. And we use functional lab testing to identify those HIDDEN stressors. There are four basic tests that I suggest to families. There are many more and I have access to many more but I find these four a really great starting point. Now, the first test is a stool test. It gives us a really clear picture of the state of the gut and things like parasites.

Lindsey Parsons 

Which one do you use?

Dana Kay 

I currently use biomeFX from microbiome labs, I have used a number of different ones over the time, but I do actually like to look at the most real up to date technology. PCR testing is one that is getting out of date now and so this is using a DNA sample of each of the bacteria or the parasites so it’s much more accurate in that way. So we’re looking for what’s going on in the gut. We’re also looking for inflammation and leaky gut and digestive enzymes – things like that. The next one we use is a food sensitivity test and not just a standard one that you can buy online. They’re not all created equal. I use a lab called vibrant wellness, and we do their food Zoomers. And so I’ve had people that have got an IgG food sensitivity test from online, and just say for example, eggs come up negative – because what that is doing is just testing the food at the top protein level. But with the food Zoomers, what they actually do is they check the food down to the peptide level of the protein. So for example, egg has something like 18 different peptides in it. So what the Zoomer is doing, is actually checking all of those 18. So I’ve had times where it’s come up negative on a food sensitivity paddle, but we do an egg Zuma this so highly reactive at the peptide level, just not at the top protein level. And so a lot of the time we won’t be successful if we didn’t remove egg. Now, food sensitivities, are not true allergies, but they do cause inflammation in the body that would a load on that bulkhead. So you can actually heal from the sensitivities. Once you heal the gut, you can start to add them back in.

Lindsey Parsons 

Do you make sure they’re off of the gluten dairy and soy before you run the food Zoomer just so that the level of leaky gut is essentially reduced prior to checking for other sensitivities?

Dana Kay 

No, I don’t and that’s because we’re doing it sort of side by side. Obviously families just start with our phase one. If they start with our phase one, then gluten, dairy and soy will be removed for six months. If they go to phase two, which is testing, then they will do it that way. Some families – when we talk about their health history, they’ve got very traumatic health history, and we know that we just need to get to it. Now I will tell you, I have had families that have come to me three years of being gluten, dairy and soy. And we do a wheat Zoomer on them. And they are so reactant to gluten, it’s not funny. They’ve been eating gluten and are probably not aware of it.

Lindsey Parsons 

I’m just curious though, whether they’re coming up with pretty much every food that the the child is eating on the food Zoomer, such that, they’re left with nothing to eat.

Dana Kay 

Yeah, look, a lot of the some of the time they do. But what we’re there because we’re there every single day holding their hand, we’ve got five weekly group coaching calls, there are so many foods out there that they can eat. We’re really guiding them through that process and if we just get so many, we prioritize – we just take the biggest hitters, and we leave the rest. We use a rotation diet on the rest. And so really, with a kid, we sort of feel where they are. We feel where the family is, we don’t want to overwhelm the family too much. Some come back with only like five sensitivities, others coming back, like my son, had 40. I actually did every single one, obviously, that’s the best, but at the same time, we need to make sure they’re getting the nutrients and everything to grow. So it is about “Let’s work out what’s best for this child based on the knowledge that we have.” So the third test that we do is an organic acid test, which I love.

Lindsey Parsons 

Great Plains?

Dana Kay 

Yeah, I loves Great Plains, but at the same time, it’s really keeping an eye on the different technologies that are out there, which one is the most up to date and which one is going to give us that best result at that time. I’m always open to making sure that I am currently using the best. Now, I love Great Plains. This organic acid test really gives us an overview of the whole body and how its functioning the need for specific nutrients, such as B vitamins, which are super important for our compromised kids – further diet modifications, so things like oxalates and salicylates, which again can be an issue for our kids. At the same time, there are many practitioners out there that will say, “Go on a low oxalate diet. Go on a low salicylate diet,” but I focus on is, why they are high. When you’ve got high oxalate, it’s usually because of mold or candida that is producing those elevated levels of oxalates. So some fruit for kids, a lot of the time in the first round, I don’t tell them to go on a low oxalate diet, because when we fix the gut, it actually comes back down into normal ranges. It’s also looking for detoxification and that’s where by looking at that, and seeing that they detoxifying properly. It’s looking at neurotransmitters, so your serotonin and your dopamine, yeast, mold, clostridia, C diff, mitochondrial function – lots of markers, there’s over 70. That’s why I love that one so much.

Lindsey Parsons 

Yeah, I love that test too.

Dana Kay 

And then the final test, which not many people know about, because it’s really specific to mood and behavior, and it’s called a cryptopyrol test. Pyrols are a normal chemical byproduct in the body. They attach to vitamin B six and zinc and draw these elements out of the body when they’re excreted through the urine. So, if a kid has elevated urine cryptopyrol levels, it can result in a dramatic deficiency of zinc and B six, and those are two critical nutrients needed for mental health. But pyroluria, which is what they call it is frequently identified in behavior disorders, ADHD, depression, aggression, violent behavior, and the symptoms are like, one for one with ADHD symptoms, or tolerance to physical emotional stress, or anger control, mood swings, poor short term memory, sensitivity to light/sound and tactile sensitivities. Another one is poor dream recall, or inability to tan. You don’t have to have all of them. You could have one or two. You could have all of the symptoms or you can have half of the symptoms. That really doesn’t matter, but I see that in probably about 50 to 60% of the kids that I test. And really, it’s about bringing in some key nutrients. The pyrols is part genetics, part oxidative stress, so a breakdown in the cells. And when there’s high inflammation, that’s when you get oxidative stress. So we reduce that oxidative stress, we reduce that inflammation. But some kids actually need a lifelong management of the Zinc and B six if there is a strong genetic component to it.

Lindsey Parsons 

Yeah, so I’m curious how high do you typically have to supplement thing can be six, if they have pyroluria

Dana Kay 

It’s based on weight. We do a metabolic weight factor and look at the weight of the child. We also bring in some key antioxidants to reduce that oxidative stress. So like vitamin C, vitamin E, selenium, I’ve actually created my own payroll supplement, because when you add in sync B six in two different forms, C, E, selenium, I actually added magnesium to it as well. You’re cutting down on sick five different supplements, and I bought it all into one, and then I adjust the dosages based on weight.

Lindsey Parsons 

Oh, okay. So like, once they hit adulthood, how many pills a day? Is it of your supplement? I’m curious.

Dana Kay 

With 100 pounds, like I only sort of go up to 100 pounds in mind. So with that, it’s probably five in the morning, five at night.

Lindsey Parsons

Okay, so that’s it another small number. With magnesium in there. I knew it had to be high, because that alone takes a lot of space. Exactly.

Dana Kay 

Exactly. Yeah. But with kids, it’s only like it’s either two in the morning to a night or three in the morning, three at night based on that weight.

Lindsey Parsons 

Of the chewable?

Dana Kay 

No, we’ve got we’ve got a powder and we also have captures up into juice, or else. Yep.

Lindsey Parsons 

Got it. So did I say I would love to have some of those studies just to link in the show notes?

Dana Kay 

Okay, sure. I can definitely dothat for you.

Lindsey Parsons 

Yeah. So obviously, since this is a show about gut health, I want to be sure we talk about the gut brain connections. So how does this apply in the ADHD world and we talked a little bit about the leaky gut. I also know that a good portion of kids with autism tend to have gut issues. Is this true for ADHD as well? Do you see a lot of gut infections?

Dana Kay 

Definitely, definitely do. And as I said, like, we change the diet. For some kids, we open up detoxification pathways, and we reduce that inflammation and their gut starts to heal on its own. And so I think that the reason why the gut is so important to this, I just want to bring it back to a couple of statistics. We know that all of these disorders and illnesses are on the rise. Everyone’s like, “Well, why is there this epidemic?” It’s actually estimated that 54% of American children have been diagnosed with a chronic illness in 2018. That figure was only 15% A couple of years ago, and I look at that increase and I’m like, “Oh my gosh, this is just awful.” One in two have anxiety, asthma, diabetes, epilepsy, cystic fibrosis, learning disabilities. One in five have allergies. One in six out developmental delays, and one in I think it’s 42 now, have autism. The reason in my opinion, the rise is happening happening so rapidly is it all begins in the gut. And that’s because 80% of the body’s entire immune system is within the gut walls, along with billions of nerve cells and extensive amount of gut bacteria. So all of our children’s health is quite literally connected to everything that occurs in the gut. And obviously, all of ours as well. It’s not just our children. The amount of families that I’ve spoken to, we always ask them, “Have you been on antibiotics when you were younger,” and a huge percentage have. I actually wish I’d kept a tally, which I haven’t. But as you probably know, and as the listeners probably know, most antibiotics work by killing bacteria or preventing it from growing. But unfortunately, most antibiotics can’t distinguish between good and bad bacteria. That means that they wreak havoc on the gut’s, healthy bacteria. And actually, many people suffer lasting changes to their gut flora as a result of taking antibiotics. So a huge percentage of these kids have been taking multiple rounds of antibiotics. That in turn is compromising the gut and when the caught the gut is compromised, because 80% of the body’s entire immune system is in there, it’s not a huge surprise to see that these disorders and illnesses on the rise. Now, to tied gut health to brain health and ADHD – that’s really the gut brain connection and that means that our brains are deeply connected to our guts. If our guts aren’t functioning well, our brains won’t be able to function well either. Now, the main area involved in gut function is the frontal lobe and that’s the area of the brain that talks to the gut via two way chemical messengers and nerve branches. The frontal lobe is involved in things like attention, focus, executive function, planning, organizing and problem solving, which are often issues that kids with ADHD struggle with. Because the frontal lobe is in the brain, many people are under the impression it’s the brain that needs care, when in reality, it’s actually also the gut that’s causing the problem. I think the biggest thing for me, and this is why we see such a dramatic change with kids when we just change the diet, 95% of the body’s serotonin and 50% of the body’s dopamine is produced in the gut. These neurotransmitters or hormones are the ones that help us manage emotions. They balance mood. They help our cognitive function and emotional dysregulation is a common symptom of ADHD. But many parents don’t realize that this emotional dysregulation actually starts in the gut where the serotonin and the dopamine are made. So the problem is not the emotions themselves, but the fact that the correct amount of these vital neurotransmitters are not being made in the first place. So by working to improve gut health, many parents of children with ADHD find that the emotional disregulation problem solved themselves. The frontal lobe starts to get optimize. A lot of those symptoms can be helped with with healing that gut.

Lindsey Parsons

Awesome. So beyond the food question, are there supplements that are evidence based for supporting kids with ADHD or adults for that matter?

Dana Kay 

Definitely. I do like to preface this to say that one thing to keep in mind with supplementation is that everybody is a bio individual meaning that every child is unique. So what works really well for one child, might show little effect for another. But that being said, there are a number that like there are there are four supplements that I love for ADHD in particular – the most studied – and one is a good quality fish oil that has Omega three and Omega six fatty acids. It’s really important to get them in the right balance. It’s really important to get a quality one and not a gummy that has sugar on it. There are a lot of studies out there that support the Omega three and Omega six fatty acids can support things like memory, hyperactivity, clear thinking, behavioral disorders and organization skills in children. The next thing is a good quality probiotic. There’s a lot of research we know that that taking a probiotic that contains either certain types of gut bacteria or spore forming probiotics can really help with boosting that gut brain connection helps supporting detoxification, it helps with anxiety and mood and also support the body against the damaging mental and physical effects of stress. Probiotics are not created equal, so really ensuring that you have a good quality probiotic is is important.

Lindsey Parsons 

So what are the ones that you like?

Dana Kay 

I like megaspore biotic*, which is a small forming probiotic. I’m not sure if you’ve discussed this on the podcast before. The reason why I like it so much is it’s kind of like springtime, where you want to make sure your grass starts growing and you put down seeds. So you’re reseeding the grass so it can grow, and the plants can grow and they can prosper. And so this is kind of like what that probiotic does it. It seeds, the the gut and lets the good bacteria grow in what that needs for that person, whereas, a lot of the strain based ones don’t survive digestion. So they go in,  they go into your stomach and they go out, and you’ve just got a lot of expensive poop. That’s why I do prefer the spore forming ones. I’m actually in the process of creating my own custom blend that has those spore forming probiotics. It will also have saffron which is supported in helping brain health as well. And it’s also going to have a couple of other strains of probiotics that help with calmness and mood as well. So I’m in the process of doing that right now.

The next one that I love is magnesium and magnesium is great for everyone. There are so many studies out there. Magnesium is needed for over 300 biochemical processes in the body. There are many different types, but parents find that it makes a surprising difference in their kids anxiety or depression, aids in sleep and also helps hyperactivity. Research suggests that children with ADHD and anxiety often have low magnesium levels, so using supplements can have a calming effect on behavior, insomnia, agitation, muscle cramps and things like that. It can help so many different things. There’s two forms that I like. One is glycinate, which helps with that calming. The other one is the three and eight, which crosses the blood brain barrier, which helps with the brain. So that helps with ADHD, for sure. The final one, which everyone should be taking, is vitamin D.  find that it works wonders are with children with ADHD and anxiety, especially when taken with omega three fatty acids. We all know that the best way to get vitamin D is to get outside, But when you live in Seattle like I do, there’s not a lot of sunshine, except for maybe five weeks of the year. My kids and I are on a vitamin D and K to supplement like most of the year except for maybe four or five weeks of the year. It’s definitely beneficial for most people.

Lindsey Parsons 

Yeah, of course. So, are there other common underlying stressors that you see in kids with ADHD – beyond the diet question?

Dana Kay 

Yeah, look, there, there are a number of things that exacerbate ADHD and we really are focusing on reducing that inflammation, those four base tests will give us a high level view. Other things that can contribute to it are things like nutritional deficiencies, and making sure that they’ve got the right balances of those nutrients. Other things like minerals and heavy metals is a big one as well. We find copper overload quite consistently in kids with ADHD, if you actually Google, copper overload and ADHD, there’s actually there’s a lot of information out there about that. The problem with it, though, is we need to be very careful of copper dumping. You’ve just got to really do it slowly, especially with with kids. Food intolerances – that’s obviously another one. Heavy metals, environmental toxins, dysfunctions in body systems and even cultural or lifestyle factors can contribute to it. Hormone imbalance, inflammation, leaky gut, pharmaceutical medications create underlying issues as well, because they can contribute to the toxic load on that bucket. There are a number of common underlying stresses that can contribute to symptoms and really, the way that I look at this journey is we are trying to reduce inflammation as much as possible to allow healing to occur. And we do that in multiple ways. We do that with diet. We do that with detox. We do that with food, which I’ve just discussed, lifestyle changes, reducing toxin exposure, reducing heavy metal exposure, reducing the infections in the gut and optimizing the gut brain connection.

Lindsey Parsons 

Awesome. So tell me about your new book and where listeners can find it.

Dana Kay 

Yeah, it was a labor of love. It is called thriving with ADHD, which is a guide to naturally reducing ADHD symptoms in your child. Years ago, when I was going through with this with my son, I wanted a book, a program a call or whatever, on ADHD that would clearly spell out exactly what I needed to do to support him with ADHD naturally, but I couldn’t ever find it. I was constantly googling for something, anything that might actually help us get some relief from my son’s challenging behaviors. And when I was looking for that book years ago, I just struck out over and over again and there was just nothing out there. There was a novelist named Toni Morrison and he once said that if you find a book you really want to read, but it hasn’t been written yet, then you must write it. And that’s what I did. And I still can’t hardly believe it actually. It’s an international bestseller in multiple categories, including children’s health, which just blew me away and it’s my life’s work. It’s the guide I needed when I started this journey with my son, but couldn’t find. It’s different from other books out there, because I’m not only a practitioner, but I’m also a mom who gets it 1,000%.I just, I just want families out there honestly, at the end of the day, yes, I’ve got a business. Yes, I do this for a living. But my goal will my passion to get this word out there to found there are so many families out there struggling. They do not need to struggle, and I’m not going to be able to work with everyone. Hopefully, this book makes it more accessible to other people out there. One day my dream and my vision is for the doctor, instead of handing a prescription medication when the child’s first diagnosis, they have this book. They say, “Go and implement all of this and if you still got issues, come back to me and we’ll talk about something different.”

Lindsey Parsons 

It’s a great dream, but I’m not picturing it

Dana Kay 

I know, it is a great dream, but I’ll do whatever I can to just get this message out there to as many people as possible, because parents do not need to suffer. Listeners can find more about my book at ADHDthrive institute.com/book. It’s available on Amazon.

Lindsey Parsons 

Yeah. Okay. And where can they find your program? Same place?

Dana Kay 

ADHDThriveinstitute.com. I’m also on Instagram, Facebook, and other social platforms @ ADHDThriveInstitute.

Lindsey Parsons 

Okay, great. Well, I will include all those links in the show notes, and any parting thoughts for everyone?

Dana Kay 

All I want to say is that we’ve probably got some parents listening who are like, “Oh, my gosh, that sounds amazing, but it sounds so overwhelming.” I’m just going to take them back to the fact that Rome wasn’t built in a day. You do not need to make all of these changes on day one. Get support when you need it. I’m very much how about I’m not an expert in everything. I will pay for experts time and advice in the area that I need specifically when it comes to my business or even my even in my personal life. All I wanted back in the day was a program like mine, and it wasn’t out there. It is possible to reduce ADHD symptoms naturally. If you’re on this vicious cycle of trial and error of medication or trial and error of anything, and you just can’t get off that roller coaster, then there are things that can help. Don’t lose hope. I’ve seen it with over 1000 families. I’ve seen it with my own family. There are solutions out there that can help.

Lindsey Parsons 

Wonderful. Yeah, that is that is my theory for everything. I might be exaggerating, but you could certainly make a good dent into almost any kind of chronic health problem through functional holistic medicine. So diet changes and such. Okay, well thank you so much for sharing all this information with us and it was great talking to you.

Dana Kay 

Thanks, Lindsay. It’s been fun

If you’re struggling with dysbiosis, diarrhea, constipation, leaky gut, candida, IBS, IBD, or other gut health or all over body problems, you’re welcome to set up a free, 30-minute breakthrough session with me (Lindsey). We’ll talk about what you’ve been going through and I’ll tell you about my 3- and 5- appointment health coaching programs in which I recommend lab tests, educate you on what the results mean and the protocols used by doctors to fix the problems revealed. Or if you’re ready to jump in right away or can just afford one appointment at a time, you can set up an 1-hour consultation with me.