Adapted from episode 67 of The Perfect Stool podcast and edited for readability.
Dr. James Adams is a President’s Professor at Arizona State University and he leads the Autism/Asperger’s Research Program there, where he is researching treatments for autism including nutritional supplements, microbiota transplants, probiotics, as well as yeast and antifungals. He also started a nonprofit to help parents of children with autism called the Autism Nutrition Research Center.
Lindsey:
So what have you been up to since we last talked?
Dr. James Adams:
Well, we’re continuing our research on microbiota transplants for children with autism and adults with autism. We’re also doing research on probiotics, and for treating autism. And we’ve also been looking at the use of and the role of yeast and antifungals for autism.
Lindsey:
Interesting. So I actually just recorded and published a podcast with Dr. Michael Biamonte. And he was talking about autism and yeast. So tell me more about that.
Dr. Adams:
Sure. 10 years ago, we did a study where we looked at 50 children with autism and 40 typical children; we found that about 25% of the kids with autism had a yeast infection, and about 10% of the typical kids did. And so one of the factors that can contribute to yeast infections is excessive use of antibiotics, because antibiotics can kill off your natural gut bacteria. And then when those are killed off, then there’s more opportunity for yeast to grow in your gut. And so at the time, as the difference wasn’t quite statistically significant, we did not follow up on it. But since then, we’ve learned a little bit more so we went back to look at the data a little bit more, and we found that the children with autism who had yeast infections also had significantly worse autism symptoms. Their gut symptoms weren’t necessarily worse, but the autism symptoms were. And if you think about what yeast does: yeast produces nasty toxins, things like alcohol, that people go and drink in Saturday night, but produces much nastier toxins than alcohol, that are much more damaging. And if you think about alcohol, it mostly has an effect on the brain, and so can affect coordination, but it can affect speech, it could affect executive functioning, and make it very difficult to regulate your emotions. So the bottom line is that we think quite a few children with autism have a hidden yeast infection that does not necessarily cause GI symptoms, but does tend to worsen their autism symptoms. And so because it just manifests as more severe autism then people don’t know to look for it and to try to treat it. And since then, there have been half of a dozen additional studies, which also show anywhere from about a quarter to even half the children with autism have these chronic yeast infections, and so it seems to be a very major concern.
Lindsey:
Interesting, and how are you measuring their yeast infections? How are you diagnosing it?
Dr. Adams:
Yeah, so we’ve looked at it in a very simple way by doing a yeast culture of the stool. So taking stool samples in our study we send them to a lab. Doctor’s data, it has a standardized stool test, and it tells you approximately how much yeast is present. One of the things I like about the test is that they also can do a sensitivity test. So after they culture the yeast, then they try killing it with different antifungals and that way you can know which antifungals are most effective against the particular strain of yeast that you have. Because some yeast can eventually develop resistance to one or more antifungals.
Lindsey:
So you know, I talk with a lot of practitioners about yeast and see clients myself. And I’ve noticed that on stool tests, it often doesn’t appear, but when you simultaneously run an Organic Acids Test, the Arabinose marker is elevated and often, you know, off the charts. And I’ve heard from a lot of people that the stool is not the most accurate way to test it. So if I see yeast on a stool test, I think, wow, they must have a lot of yeast.
Dr. Adams:
Yeah, they can set different levels. So different labs can set different levels for yeast as to how much is needed to be a positive. So we found that even a plus one on Doctors Data tests was associated with the worst neurological symptoms. And most of the kids were just a plus one, but again, that was enough to differentiate them from those who did not have significant yeast infection. But one of the other major clues that we found out, which I think is very important, is that body’s main defense against yeast is Secretory IgA, the antibodies that are excreted in the gut. And we found that there was an inverse correlation that if you had high amounts of yeast, you had low amounts of Secretory IgA and vice versa. The reason this is important is that yeast produces proteases that attack Secretory IgA. So basically, once yeast is present, once it’s formed a culture in the body, it then excretes these proteases that destroy the body’s defense against it. So it’s a vicious cycle once you have these yeast infections, they can be very hard to get rid of.
Lindsey:
Interesting. And then of course, if you have low Secretory IgA, then your gut defenses are down, and you’re probably prone to a lot of other gut pathogens.
Dr. Adams:
Exactly. And then as time goes on, the yeast within typically 24 hours will form a biofilm, and that biofilm and associated yeast will start dissolving part of the GI tract where it’s landed. It’ll also start damaging the GI tract and caused increased intestinal permeability or what we call leaky gut. So the bottom line is, I suspect that many children with autism have yeast infections for many years, worsening their autism symptoms, and they don’t know it. And so my recommendation would be for every child and adult with autism to have an evaluation of possible yeast infection using a stool test and see if it’s positive, and if it is, treat it with an antifungal. The problem is that, it seems based on the anecdotal reports I’ve had from many physicians is that after you stop treating, it’ll just come back. So some people are an antifungals for years and it seems that going on an anti-yeast diet seems to be important to help keep that gone.
Lindsey:
Right. Yeah, I have definitely seen that people who just go right back to eating a lot of sweets and white carbs will just grow it right back. It won’t take long.
Dr. Adams:
Exactly.
Lindsey:
Yes. So how have you incorporated that into your research studies?
Dr. Adams:
So we’ve proposed to the federal government to do a study of yeast levels in children with autism. And to do the first major treatment study. Up until now there’s been only one small treatment study that had a lot of limitations to it. It was a great start, but there has not been a formal major study of the effects of detecting and treating yeast infections. So I think it’s very important to do but unfortunately, the NIH does not feel that it’s very important.
Lindsey:
So it wasn’t funded?
Dr. Adams:
It was not funded.
Lindsey:
That’s a shame. And who did the other study that you’re referring to? Can you send me a link for that one?
Dr. Adams:
So there are about half a dozen groups around the world that have done studies of yeast in autism and found higher levels. But we seem to be the only group that’s looked at the correlation with more severe autism symptoms, and we haven’t even published that yet. I don’t have time to publish everything we find, but that’s together an important piece that we need to investigate further. But if we think about the effect of alcohol on the body, and the effect it has primarily on neurological functioning, I think that it’s very plausible that that could be contributing to a lot of the neurological problems, a lot of the behavioral problems that are seen in autism.
Lindsey:
So when we last talked, I think you were trying to get funding, you were starting Go Fund Me for a study that was involving younger children, I believe, and microbiota transplantation or transfer therapy…
Dr. Adams:
That’s right. And so we were doing two studies, we did receive funding from the federal government to do a study of microbiota transplant for adults with autism. And that study now is almost completed. We’ve enrolled the last participants, and we’re following them now. They’re in by mid spring. That study, the first part of the study, the treatment portion of the study will be completed. And then we’re still going to follow participants for another 18 months beyond there, because we found in our first phase one study that although we saw great improvements in GI symptoms right away and some improvements in autism symptoms, we saw even more improvement in autism symptoms at a two year follow up, two years after we stopped treatment. So the feeling of many families is that the treatment was very effective in helping their child learn but it then took time for them to learn language to learn behavior, to learn social interactions.
Lindsey:
And so for the adults, I assume you’re using the same source material that you were using for your previous studies, which is like a purified fecal transplant, essentially.
Dr. Adams:
Yeah, we took a very similar approach. The difference is now we’re using a capsule form. That’s essentially like a typical probiotic that comes in a pill. But the difference, of course, is it’s 1,000+ species of bacteria from very healthy human donors. But other than that, the treatment approach is very similar. So we pretreat with vancomycin to kill off bad bacteria. We use a bottle of cleanse to get rid of bad bacteria. And then we do the microbiota capsules. We’re experimenting in this study to see if longer dosage is more beneficial. We’re also using a higher dose to see if we’ll see more benefit. And we’re also experimenting where some of the people do receive the pretreatment with vancomycin, and some don’t, to see if the vancomycin is needed or not.
Lindsey:
And how long do you use the vancomycin for?
Dr. Adams:
We use the vancomycin pretreatment for two weeks in both the child and adult study. It’s what we used from a previous study. There was a study 20 years ago where they used vancomycin for eight weeks, very long time. A normal course for vanco was 10 days. In the eight week study, they used it because their hope was to kill off not just the bad bacteria, but also prevent any regrowth from spores. Unfortunately, when they stopped the vancomycin, within a few weeks, all the GI benefits, all the autism benefits were lost in almost all participants. That just the opposite in our study, it seems that by doing a short course of vanco, and then replenishing with the microbiota capsules, we have not seen any significant loss of benefit.
Lindsey:
And when you said bowel cleanser, we’re talking about a colonoscopy prep type of thing?
Dr. Adams:
Yeah, we do a very complete bowel cleanse. A lot of Miralax or equivalent. Along with a lot of liquids and bottom line is we try to do to just as complete as for a colonoscopy,
Lindsey:
And then how many capsules or how much is in a capsule? And for how long are people taking it?
Dr. Adams:
For the microbiota?
Lindsey:
Yeah.
Dr. Adams:
So we do a high dose for two days. And then we do a maintenance dose for eight to 12 weeks. Well, in the adult study, we’ve been going up to 16 weeks to see if that matters.
Lindsey:
Okay. And when you say a high dose, how many capsules are people having to take?
Dr. Adams:
12 capsules a day for two days, and then one capsule every several days. And this is a highly purified form that’s basically 99% gut bacteria. And because it’s in a capsule, it’s specially designed to not be affected by stomach acid. It’s a very high dose that we’re administering.
Lindsey:
Right. So enteric coated type of thing?
Dr. Adams:
More or less, more or less.
Lindsey:
Okay, so you mentioned donors, and I’m wondering whether this is a pooled donor situation, or a single donor, or just a couple donors that are going into creating these?
Dr. Adams:
Our philosophy is to use just a single donor for each batch of capsules that are produced. And the reason is, if you think back to when blood donations where used, they used to pool blood donations. Well, both my mother and my brother developed hepatitis C, when they didn’t know to test for hepatitis C, and my brother almost died from it and my mother did die from hepatitis C. So when you pool donations, you increase risk.
Lindsey:
Right.
Dr. Adams:
And so we like using single donations, single donors for each set of capsules. That way we minimize risk. And if there is a risk, we know which donor they came from.
Lindsey:
Yeah.
Dr. Adams:
I mean, in general, we’ve screened extremely carefully, just like you would for a blood donor for the Red Cross with additional questions about GI health. We also make sure that they have a lean body mass, not overweight, or underweight, which we think is also important for the microbiome.
Lindsey:
And do you have an age limit for your donors?
Dr. Adams:
Good question. Our donors are characterized by the University of Minnesota. So we use adults as our donors. I don’t think we have an age cap. But I don’t think we use anyone who’s particularly old either. So it’s a good question. I haven’t had been asked that before.
Lindsey:
Well, I’ve had a lot of people on here who have talked about what a good stool donor would be. And they seem to think an age cap of something like 25 is necessary, which kind of seems crazy to me, because, well, there’s got to be some people with great microbiomes, who somehow missed the antibiotic craze, who are older.
Dr. Adams:
Yeah, yeah, if I had to guess I would say going up to 65 would seem very reasonable to me. Again, depending on the individual’s health. The advantage of older donors is that will you know if they’re likely to be someone who’s developing GI cancers or not. With young donors, you don’t know if they’re prone to or not in the future.
Lindsey:
And so if you only have one donor, can you really say this therapy modality is effective? Or can you only really say that this particular donor had a great microbiome?
Dr. Adams:
Well, we’ve used many donors. It’s just that for any batch, when we’re dealing with a patient, that patient would receive a microbiota from just one donor. Or possibly, in our first study, we used two donors, one for the initial batch for the high dose, and another one for the maintenance. So different donors have different microbiota, I think there may be some benefit to using, say two donors. Because each donor will have their own set of healthy bacteria, but then two donors together, have somewhat more species. So there might be an advantage to that; you might get greater diversity. And in general, higher diversity is associated with higher gut health.
Lindsey:
So given that you’re doing a study with adults, are you working primarily with adults who are high functioning enough to be choosing to be in the study themselves or are they typically being enrolled by guardian parents?
Dr. Adams:
Both. So we do have a few individuals who are high functioning enough that they’re working, living on their own and they’re able to handle the questionnaires in the process. We still have an evaluator to evaluate them. But in other cases, we have some very severe individuals, nonverbal, very limited, who are also undergoing the treatment.
Lindsey:
And do you have any preliminary sense of what’s going on with the…
Dr. Adams:
I’m blinded, but I will say – so I don’t know who has received the real treatment who receives the placebo – but eventually, anyone who receives the placebos switch to the real treatment. So I’ll just say that we’ve seen a lot of good improvement, but until we publish the work, I don’t want to say more than that.
Lindsey:
Fair enough. Okay. And then the study with children, where is that right now?
Dr. Adams:
Yeah, so both our studies were hit hard by COVID in a couple ways. In one way, simply because we had to stop using the capsules that had already been produced. Because we had not tested the donors to see if they had COVID. So we had to stop and then implement a new process and also the university we’re working with, University of Minnesota, their research labs were closed for many months because of COVID. And then they had to restart them, which took many months. So we had a big delay there. And then we had to also develop new standards to test the donors for COVID. And also test their tools for COVID or SARS CoV-2, but now we’re in good shape with both our studies, and for our child study, we have treated about half of the participants, and we’re getting ready to start treating the other half over the next several months.
Lindsey:
What was the age on the second study?
Dr. Adams:
For the child study, we’re doing a little bit younger now. So our first study was aged 7 to 17. And now we’re going down to age 5.
Lindsey:
Okay.
Dr. Adams:
Again, being a little cautious because most FMT studies have been done for adults. But because we saw really no adverse effects in our Phase 1 study, and we haven’t seen any significant adverse effects in our Phase 2 studies, we’re glad to see the FDA allowed us to go down to age 5.
Lindsey:
And so was that was that all you were asking for? Or did they choose that cut off?
Dr. Adams:
We asked to go down to age 5 based on what we figured the FDA would allow.
Dr. Adams:
Okay.
Dr. Adams:
But I’d like go down to an even younger age, you know.
Dr. Adams:
Of course.
Dr. Adams:
Interestingly, when we asked these families about when the GI problems began, in almost all cases, we’re hearing that the GI problems began in infancy. It’s a little hard to detect exactly when they occur because infants don’t have normal stools, but it seems that in almost all cases, these GI symptoms have begun in infancy and have lasted many years.
Lindsey:
And so we were talking in the last podcast about FDA approval for use of microbiota transplantation for autism. And you were saying you have to go through the Phase 1, that you’re in Phase 2 and then you’ve got to go through the Phase 3. Where are you in that whole process, then?
Dr. Adams:
Yeah, so we’re in our Phase 2 studies now. One of our Phase 2 studies for adults is almost complete. And the study for children we’re about halfway through. So we’re making good progress. We were slowed down, as I said, quite a bit by COVID. That also hurt our finances quite a bit, too. But now that we’re past those problems, we’re able to be making good progress. At the end of these, we will then ask the FDA for permission to go ahead and do Phase 3 studies.
Lindsey:
And Phase 3 is different from Phase 2 in what way?
Dr. Adams:
It’s usually the same study design; you might make some differences to the study design, if you wish, so you can use your results of Phase 2 to help you choose better assessments or choose better treatments. So for example, for adults, we now know that we need to treat them a little bit longer than the children. Our guess is that because they’ve had these GI problems longer, they take a little bit longer to improve. And also because we’re seeing minimal adverse effects, we’ll probably consider going to a higher dose in future. And so those would be a couple of the types of changes you might consider making. But the main difference is just larger studies. So multiple sites and more participants. So maybe a study with 500 to 1,000 people would be typical for an FDA study.
Lindsey:
And for your studies is having GI problems one of the inclusion criteria?
Dr. Adams:
That’s a great question. At the moment, yes, it is. But that’s simply again to be cautious, that is the group that we think of most likely to treat. But in some of our earlier work, I guess it was eight years ago, we saw that low diversity of gut bacteria was present, even in the children with autism who did not have obvious GI symptoms, but they still had abnormal gut bacteria. So we suspect that in the same way, you could have a hidden yeast infection that we think is worsening autism symptoms. We think it’s very possible to have a bacterial infection whose primary effect is releasing toxins that affect primarily the brain and not the gut. So I think it’s very possible that there will be some children who don’t have obvious GI problems, who would also benefit. And that’s why we’re doing the microbiota evaluations to try to figure out exactly what biomarkers are the problem, exactly which bacteria are the problem. Is the lack of beneficial bacteria, in some cases? Is the presence of pathogens? And others, and in some cases, both,
Lindsey:
And how are you evaluating the microbiomes?
Dr. Adams:
My collaborator, Rosie Krajmalnik-Brown, is doing that. So we’re using some different approaches. Primarily, she’s been working with 16S. She’s also doing some metagenomics analysis as well. And we’re looking into some additional methods as well.
Lindsey:
So even though it’s not part of the study design, you could easily do a post hoc analysis of yeast, because you have those if the 16S is used.
Dr. Adams:
Yeah, you can’t use 16S for yeast, you use different things for yeast instead. But yes, with the samples, we have lots of samples in our freezer, that we would love to do yeast testing on. We just lack a budget to do that.
Lindsey:
Right. Right. But if you have a metagenomic sequencing, then you’d have yeast.
Dr. Adams:
Yes.
Lindsey:
Yeah. So since not everybody who listens to this will want to go back and listen to the other podcast, can you just give me a summary of if you are a parent of a child with autism, short of trying to get them into one of your studies: what can you or should you do right now, if you have a child with autism who has gut issues?
Dr. Adams:
Yeah, it’s very important to point out that microbiota transplant is viewed by the FDA as an experimental method. And so we’re researching it, but it’s not publicly available. The people that have a proven C Diff infection, the FDA allows them to get a fecal transplant, but it’s not approved yet by the FDA, so the difference is you can’t use it off label. So the pills that we produce, we’re not allowed to give to the general public until we have FDA approval.
So there are many other things that can be done though. So as I mentioned, I think every child with autism, regardless of whether or not they’ve GI problems, should be assessed for a yeast infection, because about a quarter to a half of them seem to have a hidden yeast infection that’s worsening their neurological symptoms. But for gut symptoms, I think there are many things that can be done. We did a comprehensive diet and nutrition study where we looked at giving our vitamin-mineral supplement that we’ve designed, in addition, followed by fish oil, followed by several other nutritional supplements, and then finally, a healthy diet. And so switching children to a healthy diet, I think is very important: a diet that’s rich in fruits and vegetables, and good sources of protein, and minimal junk food. And then testing. Some children need to go on dairy-free or gluten-free diets, and the best way to know if it’s helpful is just to try it for a month to three months. Probably about half to two thirds of individuals with autism may benefit from this allergen-free diet.
Lindsey:
Can I stop you just for a second? Because I imagine a lot of parents of children with autism listening will think: I can barely get my child to eat anything but these three or four foods, much less the idea of a diet rich in fruits and vegetables. Any advice there?
Dr. Adams:
I’d say… the example I’d give is, you know, not giving your child fruits and vegetables, it’s like not putting gasoline in your car. Your car is designed to run on gasoline. Your child’s body is designed to run on fruits and vegetables, so you are nutritionally depriving them of critical nutrients that their body needs. So it is just critical to try to get vegetables and fruit into them. But if you can’t, the major nutrients that the body needs, our vitamins and minerals, essential fatty acids, and protein – you can live without carbs, with limited amount of carbs, most kids with autism are getting too many carbs. If you can’t do a healthy diet, and certainly many children can’t, then that’s why we’ve created a vitamin-mineral supplement. We’ve done four research studies on it now. And that’s why we’ve made it available through our nonprofit. So the first step of our NRC protocol is to put them on a vitamin-mineral supplement, because even if they are on a good diet, our latest study of 160 children shows even if they are on a good diet, they can still very often benefit from the supplement. Kids with autism just need higher amounts.
Lindsey:
But what about other shortcuts like smoothies, or greens powders or reds powders? You know, are there any of those successful?
Dr. Adams:
I’m a very big fan of smoothies. I love to do smoothies with vegetables, and some fruit; start out with more fruit so it’s more palatable and tailor back, but I drink a vegetable/fruit smoothie at least once a day. So I think that’s a very good way to go and if the children are needing protein, you can add in protein powder, or even free form amino acids. A few kids with autism cannot digest protein, so they need free form amino acids instead. So I think those are very important. But beyond diet, there’s more that can be done.
Remember that the main factor in GI health, the main food that the gut needs, comes from fiber. So when your gut bacteria digest fiber, it produces butyrate and that’s 60 to 70% of the energy for the cells that line the GI tract. So most women are getting only half the amount of fiber; most men are even worse, they’re only getting a third the amount of recommended fiber. And so literally there’s cells that line their GI tract that are starving for what we know to be the critical nutrient. So the best form of fiber is your fruits and vegetables. So instead of drinking orange juice, eating a whole orange. But there are fiber supplements, those may be helpful. But once the GI symptoms begin, it seems that calling it a high fiber diet, although it’s probably helpful for preventing these problems, doesn’t seem to be as helpful in those cases for treating them.
We are experimenting with probiotics. We’re doing a very large, I think the largest ever study of probiotics for children with autism. We’re working with a company called Sun Genomics. And what we’re doing is a metagenomics analysis; we’re looking at 1,000s of species of bacteria in each person’s gut. And based on that, we have an algorithm to try to determine or guess, which are the most likely of the standard commercial probiotics; which particular species of strains might be most helpful. This is very early stages. We have a lot to learn, but we think it’s better than just picking a probiotic off the shelf instead trying to use an analysis of the microbiota in the store, to try to estimate which bacteria is most helpful.
Lindsey:
So you’re just at the point of analyzing, not yet of giving them probiotics?
Dr. Adams:
We actually already have several hundred individuals who are in the treatment study. But I’ll say the algorithm is early stage, and we hope from the data that we will be able to learn how to improve it.
Lindsey:
And are they all getting the same probiotic? Or is it tailored to their own gut?
Dr. Adams:
It’s custom, the whole point of this study is to customize it for each person.
Lindsey:
Wow. Okay.
Dr. Adams:
I think of it this way: the analogy I like to give is that your gut is like a village and in your village, the village needs to be diverse. The village is not going to be very functional if you have 10 farmers, and no doctors. It’s also not going to be very functional if you have 10 doctors and no farmers. You need a balance of the members in your village; you need a balance in your microbiota. So if you’re very high in one species, you don’t want to be giving more of that. You want to be trying to promote diversity.
Lindsey:
And you’re working pretty much with the aerobic strains that are available, like the lacto, bifido and spore-based?
Dr. Adams:
Yeah, so with Sun Genomics, we are limited to the probiotic strains that are available, but they also use some special probiotics as well.
Lindsey:
Okay. Are you using spore-based as well as the lacto/bifido types?
Dr. Adams:
Depends on the individual.
Lindsey:
Okay. And now it is exciting that there’s beginning to be some products out there with some anaerobic bacteria. I’m taking Akkermansia muciniphila* myself.
Dr. Adams:
Yeah. So again, we’ll see what is most helpful for people. There have been about 10 probiotic studies for autism and there’s some design issues with some of them, but in general, it’s suggested that some individuals can be helped. And I think rather than trying to say what is the best probiotic, the better question is what probiotic is best for me.
Lindsey:
Right. Okay. And what about butyrate supplementation? Have you looked at that at all?
Dr. Adams:
I think it makes a lot of sense. I have not seen any research studies on it. But I think it seems like a very intriguing approach to do.
Lindsey:
Yeah, that’s actually one of my favorite supplements right now, tributyrin. Okay, and what about oxalates? Have you looked at that at all?
Dr. Adams:
I’ve looked at the limited research on it. I think it’s an intriguing theory. I’m not convinced yet that a low oxalate diet is necessarily beneficial. I think the data on it that I’ve seen so far – I haven’t seen much. I think it’s an interesting theory. Needs more work.
Lindsey:
Okay. So, at the moment, if people want to find out more about just getting help for their kids the autism… what’s it called, Autism Research Center?
Dr. Adams:
No, they can go to our website, the Autism Nutrition Research Center. And we have there both the vitamin-mineral supplement we’ve developed, and, again, I don’t receive any royalties or salary from them, I just served as a volunteer there. But we also have our NRC protocol, which follows four of the six most important treatments that we used in our 12-month treatment study. And so that begins with the vitamin-mineral supplement, followed by high dose fish oil. Fifteen studies now showing kids with autism are low in omega 3’s. And several studies showing it helps a little bit. But I think they’ve been underdosing. In our study, we found that 80% of kids seem to benefit from the vitamin supplement and also from the fish oil. And then carnitine. We did one study. Another group did a randomized, double-blind study showing that a subset of individuals with autism benefit from high-dose carnitine. So pharmaceutical level dosing.
Lindsey:
Okay, how much of that would that be?
Dr. Adams:
It’s in the protocol. So it depends on the person’s body weight as to what should be used. So you can look it up on our website to see. Again, it’s all dosed by body weight. And in the first study we did, we used one dosage, and another group followed up on the stud. Instead of three months, they’ve treated for six months, and they use twice our dosage, and they saw even more benefit. So we have a recommended dosage on there; it could be some individuals benefit even more. I think the best clues for who is likely to benefit from carnitine are people who have low carnitine in their diet, because you get about three quarters of your carnitine from your diet. And pretty much the only dietary source is beef, and to a much lesser extent pork. There’s not a lot of carnitine in other food sources. Your body can make a limited amount, but it seems kids with autism need more. And then the other treatment, the fourth treatment, as I mentioned, the healthy, allergen-free diet. I’ve seen too many families go from eating regular Oreos to gluten-free Oreos. I find that not very good. I want to see them going from Oreos to broccoli.
Lindsey:
Yeah.
Dr. Adams:
So that’s my radical recommendation is to eat your fruits and vegetables: whole fruits, whole vegetables, that have all the fiber; all the rich vitamins and minerals and vital nutrients in them.
Lindsey:
And then and if possible, to include that beef in the diet.
Dr. Adams:
Yes, I think a modest amount of beef is very good for carnitine for the subset of individuals who need it. The other clue as to who needs carnitine is children who seem to have very low endurance, who fatigue very easily. The extreme example we had was a young girl who could not climb into the family van. She could not go up steps and she could walk only short distances like a quarter mile before they’d have to put her in a wheelchair. And then after treatment with carnitine she began skipping around the house, she learned to bicycle, she went on long walks with her families. They put the wheelchair in storage; it was thrilling.
Lindsey:
Wonderful.
Dr. Adams:
And so it wasn’t just physical endurance, but also mental endurance because the organ in your body that needs the most energy is the brain. So the carnitine is important for boosting energy for the body and the brain.
Lindsey:
Right? Yeah, it’s actually something that a lot of my clients end up taking because it shows up low in their Organic Acids or they have indications of problems with beta oxidation of fatty acids and creating energy from fats. So it’s a useful supplement.
Dr. Adams:
Yes, yes, we think it is very important.
Lindsey:
Okay. Anything else you’d like to share with us before we get off about your current work or future directions or how families can get involved?
Dr. Adams:
I think those are the major points that we’ve covered about what we’re doing with those areas. We have a few new studies that we’re working on, but not ready to announce them yet. We are doing another trial of a vitamin-mineral supplement to try to better understand who seems to benefit. But from our latest analysis, it seems to benefit children and adults, both genders, doesn’t seem to matter if you had regressive autism or early onset. And surprisingly, to us, it doesn’t seem to matter if you had good or poor diet quality. So that it seems that even if you’re on a good diet, children with autism just seem to need extra amounts of these certain important vitamins and minerals.
Lindsey:
Interesting. And in terms of staying up-to-date on studies, for people who might want to enroll their children or themselves, where would people go?
Dr. Adams:
They can go to our website autism.asu.edu. But our studies on microbiota transplant are overwhelmingly filled, we’ve had over 2,000 people apply and be on the waitlist for those. So we don’t have any openings there. But a probiotic study is currently open. It’s an unequal study, because families have to pay to purchase the Sun Genomics, but then to participate in the ASU part of the study is free.
Lindsey:
And where would they go for that one? Same place?
Dr. Adams:
Same place: autism.asu.edu
Lindsey:
Wonderful. Well, thank you so much for coming on for this update. And I’ll just encourage people to go back and listen to the other episode so they get the full scoop on what you’re doing and what you’ve been doing. And this can be a good follow on.
Dr. Adams:
Very good. Thanks so much, Lindsey.
Lindsey:
Thank you.
If you’re suffering with SIBO or any other gut issue, 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 gut health coaching 5-appointment program 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.
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