Currently, there is insufficient evidence to support instituting a gluten-free diet as a treatment for autism.

24 May

Perhaps the most commonly cited alternative therapy approach for autism is the gluten free/casein free diet. The idea was promoted largely based on the “leaky gut” and “opiod excess” idea of autism. The basic idea was that the intestines of autistics are for some reason “leaky” and incompletely digested proteins from gluten (grains) and casein (milk) enter the bloodstream and act much like an opiod (drug) causing (somehow) autism. Multiple research teams have looked for evidence of these “opiods” without success. But the idea that eliminating gluten and/or casein as an autism treatment.

Timothy Buie is perhaps one of the most respected gastroenterologists in the autism communities. He has recently written a literature review on the topic: The relationship of autism and gluten.

Here is the abstract:

BACKGROUND:

Autism is now a common condition with a prevalence of 1 in 88 children. There is no known etiology. Speculation about possible treatments for autism or autism spectrum disorders (ASD) has included the use of various dietary interventions, including a gluten-free diet.

OBJECTIVE:

The goal of this article was to review the literature available evaluating the use of gluten-free diets in patients with autism to determine if diet should be instituted as a treatment.

METHODS:

A literature review was performed, identifying previously published studies in which a gluten-free diet was instituted as an autism treatment. These studies were not limited to randomized controlled trials because only 1 article was available that used a double-blind crossover design. Most publish reports were unblinded, observational studies.

RESULTS:

In the only double-blind, crossover study, no benefit of a gluten-free diet was identified. Several other studies did report benefit from gluten-free diet. Controlling for observer bias and what may have represented unrelated progress over time in these studies is not possible. There are many barriers to evaluating treatment benefits for patients with autism. Gluten sensitivity may present in a variety of ways, including gastrointestinal and neurologic symptoms. Although making a diagnosis of celiac disease is easier with new serology and genetic testing, a large number of gluten-sensitive patients do not have celiac disease. Testing to confirm non-celiac gluten sensitivity is not available.

CONCLUSIONS:

A variety of symptoms may be present with gluten sensitivity. Currently, there is insufficient evidence to support instituting a gluten-free diet as a treatment for autism. There may be a subgroup of patients who might benefit from a gluten-free diet, but the symptom or testing profile of these candidates remains unclear.

To paraphrase the conclusions: The evidence is not there for eliminating gluten from the diets of autistics. Perhaps some minority has a gluten sensitivity but so far there is no good test for this possible subgroup.


By Matt Carey

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61 Responses to “Currently, there is insufficient evidence to support instituting a gluten-free diet as a treatment for autism.”

  1. Dave May 24, 2013 at 11:37 #

    Although this seems like a solid scientific approach, I disagree with the conclusion, or at least with the implications for treatment. Since gluten-free diets are relatively harmless, the best approach for a doctor to take would be to suggest that the parent give it a try. The doctor might provide some background information, and might even run a gluten allergy test, but ultimately, each parent, and each autistic individual, should decide for themselves whether it helps.

    In our case, the doctor said that current medical research does not support the effectiveness of gluten free diets, but he suggested that we give it a try for several weeks, and keep a log of foods, as well as behaviors, sleeping patterns, emotional stability, and so on. The effects we noted were minor and gradual, and we saw nothing that we felt was conclusive. When we re-introduced gluten, on the other hand, the effects were dramatic. Sleeping patterns were disrupted, language and emotional stability regressed, and repetitive behaviors shot up to a level that we were getting notes from teachers and therapists asking what had changed.

    Although this is not a scientific study, we have witnessed the same reaction five times now, and three of those times started 24 to 48 hours after receiving gluten. (The other two times were unexplained.) Scientific? Hardly. Sufficient to justify a modified diet? Absolutely.

    I also disagree with your statement that the gluten free diet is based on the leaky gut theory. This is just one of a number of theories, and it happens to be the one that most people tend to disagree with. (Did you include the least credible theory as a strawman to discredit the other theories?)

    The other theories include:
    1. Mild allergy to gluten is more common in autistics (http://www.sciencedaily.com/releases/2012/02/120229105128.htm)
    2. The peptides produced from gluten digestion are more harmful to autistics: (see http://www.webmd.com/brain/autism/gluten-free-casein-free-diets-for-autism “Researchers have found abnormal levels of peptides in bodily fluids of some people who have symptoms of autism…” )
    3. Gluten and casein have been shown to increase inflammation, and there is a theory that brain inflammation worsens the symptoms of autism (see, for example, http://allergies.about.com/od/foodallergies/a/autismallergy.htm)

    Those are just the three most common theories. There are dozens of others. In our case, for example, we have known for a long time that our son has unusually low levels of stomach acid. These low levels might lead to insufficient digestion of food proteins, and therefore insufficient levels of certain amino acids. Some people believe that amino acid imbalances can trigger symptoms of autism. This is kind of a fringe theory, but it points to a very important detail that a lot of research misses: Every child is different.

    We know that autism has a genetic basis, we just know very little about how the genetic differences affect the brain. Research on autism and glutamate receptors, for example, is in its infancy.

    We have friends who have tried the gluten free diet, and did not notice any difference at all. Should we assume that they are wrong? Should we assume that we are? Or is it remotely possible that the genetic condition they are dealing with is substantially different from the one we are dealing with?

    Considering the vast number of genetic issues that may be linked to autism, I think the odds that there may be different types of autism are approaching 100%. As such, the odds that a single treatment method will work for all autistics is approaching 0%. Somewhere in between 0% and 100% is the chance that a gluten free diet will help any given individual (autistic or not).

    If we were talking about stem cell therapy, then we could safely reject anything under 50% just because of the poorly-understood risks. But what, exactly, are the risks of a gluten-free diet?

    • Science Mom May 24, 2013 at 13:35 #

      If we were talking about stem cell therapy, then we could safely reject anything under 50% just because of the poorly-understood risks. But what, exactly, are the risks of a gluten-free diet?

      The risks are malnutrition. Do you think that most parents keep a log and administer a restrictive diet under the guidance and monitoring of a physician or registered dietician or are most ‘DIYers’? It may seem like a harmless intervention and maybe helpful with the proper oversight however I don’t believe that is the case with many or most.

      • Sullivan (Matt Carey) May 24, 2013 at 15:03 #

        I would add: how many are working with a dietician who is not biased towards the alt-med approach to autism? I.e. eliminate that bias.

        Early on I wanted advice on nutrition for my kid. A local autism school recommended a dietician. Unfortunately, said dietician was DAN!. I got much better advice, at less cost of time and money, from a regular dietician. Frankly, the DAN! dietician’s advice was horrendous. After two hours of ignoring my questions and throwing guilt and bad science at me to get me onboard for a full DAN! approach, I was able to get said dietician to answer my main question: how do I approach an extremely picky eater? Answer, “starve him/her”. Seriously. “Starve him/her. After a couple of days s/he will eat whatever you put in front of him/her”. The diet recommended just supported the picky eater style and would have resulted in a *less* nutritious diet.

        For less money, a real nutritionist helped me log my kid’s diet, calculated the nutrition my kid was getting and gave suggestions on how to improve the diet. This nutritionist followed up on no charge to see how my kid was progressing.

      • futuredave5 May 25, 2013 at 12:03 #

        Matt, One of the problems with the DAN approach is that a lot of bad science is in the mix. I am not sure it is fair to reject every part of it just because some parts are unproven.

        We had a similar problem finding a dietitian (or, if you are using the U.K spell-check: “dietician”) who actually understood diet and autism. We ended up getting better advice from cookbooks.

        Oddly, the “let ‘em starve” approach usually works for typical kids. (They get hungry, they eat.) For autistic kids, it almost always fails. I don’t have to tell you why, but apparently someone should tell the DAN “dietitians”.

      • Maria L May 25, 2013 at 18:53 #

        Hi
        the point of malnutrition is a serious one; besides, other problems like GERD, H. pylori and lack of gut flora- with the importance of it- collaborate in making all the things worse… I agree with you about the careful approach and it seems that nothing is perfect: there are mixed aspect in terms of what is useful for one side- in practice, in the concerned doctor consultation about the person with ASD- and what is proven by the other considering the open literature on the topic, available; however, extremisms are not useful. One thing is to say that GGCG is not a treatment of autism,- and this is the topic of the review, other thing is to present the GFCF as part of a careful approch to personalized medicine; in the present picture, no generalization is useful

      • Sullivan (Matt Carey) May 25, 2013 at 22:44 #

        Keep in mind, he isn’t saying there is never any benefit. As a treatment for sensitivity to gluten, there would be. As a treatment for autism, the evidence doesn’t support it.

        Also note that I didn’t say that one should reject all of DAN because some parts are unproven.

        First, let’s take the last part–it’s unproven. Beyond unproven, some parts are just downright wrong. They are based on an incorrect, obviously false, view of autism. A good example is chelation. Some aspects carry risks with no benefit. Calling it merely “unproven” is a major understatement.

        Most of the rest is basically guesswork based on a number of poorly formed ideas of autism. Jim Laidler’s discussion is linked to above. He has a good discussion either there or elsewhere of how much of autism alternative medicine is just one or more people’s pet ideas and it gets picked up.

        As to the “let them starve” approach. For a time, there was a belief among alternative medicine practitioners that autism was mitochondrial dysfunction was a cause or a comorbid condition of autism. The idea of starving a kid with mitochondrial dysfunction is pretty horrifying.

      • Sullivan (Matt Carey) May 24, 2013 at 15:06 #

        One of the strangest comments I’ve read came from a prominent “rescue angel”. In supporting the idea that soy should be removed from diets as well, said Rescue Angel commented that soy is just a marketing effort by big agriculture. In reality, according to the Angel, no one in Asia consumes soy. We are just told that as part of Big Agriculture’s marketing.

      • futuredave5 May 25, 2013 at 11:43 #

        Science Mom: Malnutrition is a risk with all autistic children. Is there some evidence that the risk is worse with kids on a “voluntary” gluten-free diet? If there is such evidence, then it would be an important point to consider. If there is no such evidence, then the argument has no validity.

        I don’t know what percent of autistic kids refuse some sort of food, but my experience is that it is pretty high. I don’t agree with the theory that removing gluten automatically makes a diet less balanced. In fact, our experience was that removing the gluten improved my son’s average diet, by encouraging him to eat more proteins in place of wheat.

        i understand that gluten-free is not for everyone. Just because something is not for everyone, though, does not mean that it could lead to malnutrition. By that definition, video games could lead to malnutrition because kids would be playing instead of eating.

        Parents who have autistic kids need to (and usually do) step up to the plate and take some responsibility for what their children eat. If a child refuses to eat veggies, for example, it is the parents job to sneak it into “milkshakes” and muffins and whatever.

        It is not fair to assume that a parent who tries a gluten free diet on their child would suddenly decide that going gluten-free is a substitute for proper nutrition. Our experience has been that parents who are interested in the proteins their child eats are also interested in the vitamins, minerals, and fiber.

        If we are talking about uninformed parents, then the risk is not the diet, it is the lack of information. Adding gluten will not improve the information flow.

      • passionlessDrone May 27, 2013 at 17:30 #

        @Everyone –

        Regarding mechanisms / differences in the autism subgroup, this paper might bee of interest to some:

        Alterations of the intestinal barrier in patients with autism spectrum disorders and in their first-degree relatives

        A high percentage of abnormal IPT values were found among patients with autism (36.7%) and their relatives (21.2%) compared with normal subjects (4.8%). Patients with autism on a reported gluten-casein-free diet had significantly lower IPT values compared with those who were on an unrestricted diet and controls. Gastrointestinal symptoms were present in 46.7% of children with autism: constipation (45.5%), diarrhoea (34.1%), and others (alternating diarrhoea/constipation, abdominal pain, etc: 15.9%). FC was elevated in 24.4% of patients with autism and in 11.6% of their relatives; it was not, however, correlated with abnormal IPT values.

        Note that this had a large group compared to others looking for intestinal permiability changes; ~ 200 kids with autism IIRC.

        @FutureDave –

        Although this is not a scientific study, we have witnessed the same reaction five times now, and three of those times started 24 to 48 hours after receiving gluten.

        Yeah, sounds exactly like our experiences.

        If we are talking about uninformed parents, then the risk is not the diet, it is the lack of information. Adding gluten will not improve the information flow.

        LOL and so true. Most American children get plenty of wheat, and we are over run with children with diabetes and obesity, conditions which used to be unknown in children.

        @Sulllivan –

        Frankly, the DAN! dietician’s advice was horrendous.

        That is terrible, but is just annectode. My regular pediatrician gave us horrible advice too, but that’s no reason to disregard the all pediatricians, or even all of that pediatrician’s particular advice.

        I would have an exit strategy: how long to try to and how to measure success.

        The exit strategy *should be*, I gave a challenge of the restricted food and nobody could tell a difference. You don’t tell teachers/ therapists/grand parents/whoever that you are challenging, and then see what happens.

        Which, after decades, still doesn’t support the idea that removing gluten is a treatment for autism. So, yes, there’s nothing new there.

        There are a grand total of 2 placebo based studies; I’m not sure why Biue didn’t include the Elder study, which was placebo controlled, blinded, and cross over. It was small (13 participants), and while no ‘group level’ changes were seen, two individuals did improve and blinded therapists noted improvements in those children.

        You can’t go on and on about ‘after decades’, and pretend that it has been studied; if we exclude Elder, like Biue did, you’re talking about a grand total of thirty kidsthat participated in gold standard studies. It isn’t about the length of time, it is about the number of quality studies. According to Biue, the number of quality studies is one.

        Meanwhile, someone draws blood from eight thousand kids, throws it at a sequencer in a desperate attempt to find CNVs, finds seven kids with a mutation on SHANK3, and everyone claps about how it clearly shows a predominantly genetic condition. Meanwhile, in de Magistris, which I linked to above, altered intestinal permiability was observed in over a third of children with autism.

        – pD

      • krissy May 29, 2013 at 00:39 #

        A gluten heavy diet is malnutrition. These are empty calories eaten to try and fill up a low income diet. White flour has been linked to high blood sugar and diabetes too.

    • Sullivan (Matt Carey) May 24, 2013 at 14:54 #

      You disagree with Dr. Buie’s conclusion, but your discussion doesn’t really address this issues. There is no solid evidence that in general this is a treatment, there is no evidence that it is a treatment for autism rather than a treatment for some sensitivity, there may be a group who responds to an elimination diet but they are likely not a large group–and this may not be specific to autism.

      I have no problem with elimination diets if done appropriately. I would avoid “DAN” type doctors and nutritionists and work with a true nutritionist to make sure my child is getting the correct nutrition. I would have an exit strategy: how long to try to and how to measure success. All to often I read discussions online where the parents are told

      1) try it for at least six months (or longer). If you don’t see any improvements (who doesn’t improve over six months?) it may be that a tiny amount of gluten (or whatever is being eliminated) got into the diet.

      2) if you see improvements, then biomed works for your child and you should try more

      3) if it doesn’t work for your child, then you haven’t tried enough biomed and you should try more.

      (2) and (3) point to the use of elimination diets as “gateway” therapies to even less supported and more risky approaches.

      When one eliminates some part of the diet and reintroduces it, there will be an adaptation period. I can recall eliminating red meat from my diet. Taking it out was met with no immediate effect. Reintroducing it was definitely met with digestion issues and discomfort. I’m not innately sensitive to red meat, but I did need time to adjust to digesting it again. I’m not saying that all who reintroduce a food and see a difference are going through that, but one should be aware of this.

      You should be aware that your theory #2 *is* the opiod excess/leaky gut theory. Opiod “peptides” are key to that theory. Your link doesn’t point to which researchers have found these peptides. My guess is they are pointing to Paul Shattock, whose work has failed to replicate and goes back to pre-Wakefield days (he influenced Wakefield).

      By the way–the idea that there are more than one autism is old. I have a New York Times article from the ’70s talking about it, and I bet there was discussion in the literature about it before that.

      • futuredave5 May 25, 2013 at 13:59 #

        Matt,

        I think it is fair to distinguish between autism and gluten sensitivity. Obviously, medical research has documented many cases on gluten sensitivity that are unrelated to either celiac or autism. I am not sure of his statement that there is no test for gluten sensitivity. I thought there was. (http://evolvify.com/the-case-against-gluten-medical-journal-references/)

        But I think I was pretty clear about why I disagreed with his conclusions. All he did was review literature, and weighted the single double-blind study so heavily that it displaced more than one study that reached the opposite conclusion. For example: Where does http://www.ncbi.nlm.nih.gov/pubmed/22564339 appear in his research? Did he exclude it, or did he just decide that the results were “insufficient”?

        How exactly, did he discount the other studies? Did he apply his own adjustment for parent bias? Are we supposed to round up parents who have observed results, and tell them they are wrong, based on the results of a very small double-blind study that was done on someone else?

        Based on my experience, tests that were applied to other autistic children are not a very good indicator of the results that I will see. As you mentioned, the idea that there are many different forms of autism is nothing new.

        As far as the typical period of re-adjustment, it certainly makes sense that once the human body has “forgotten” how to digest certain foods, it will take a while to re-introduce those foods. I am not sure that is a good argument to just “keep drinking”, as it were.

        As far as research that summarizes other research, that is nothing new either. IAN produced a pretty good summary of the problems studying gluten free diets on autistic children. It is reproduced at Autism Speaks: http://www.autismspeaks.org/news/news-item/ian-research-report-special-diets

      • Sullivan (Matt Carey) May 25, 2013 at 15:54 #

        “all he did was review the literature”

        Which, after decades, still doesn’t support the idea that removing gluten is a treatment for autism. So, yes, there’s nothing new there. There’s nothing new in the fact that there is no evidence to support the idea.

        What is new is that Tim Buie decided to take the time to write this. Did he adjust for his own bias? I think many people would say that he would be biased towards being receptive to parent’s ideas. He is

        How, exactly did he discount other studies? What other studies? Parent reports like the study you link to? Dr. Buie is on the front lines of working with autistic children with GI problems. He is sought out by the very parents who would report benefit of GFCF. Again, this is why this study is remarkable.

    • Gomer Kierkegaard May 30, 2013 at 22:29 #

      “Since gluten-free diets are relatively harmless, the best approach for a doctor to take would be to suggest that the parent give it a try.”

      When confronted with a parent who is asking about claims that repetitive behaviors can be reduced by having their child wear penny loafers instead of sneakers, the best approach for a doctor to take would be to suggest that the parent give it a try.

      When confronted with a parent who is asking about claims that repetitive behaviors can be reduced by having their child wear their hair short rather than long, the best approach for a doctor to take would be to suggest that the parent give it a try.

      When confronted with a parent who is asking about claims that repetitive behaviors can be reduced by having their child wear a tin foil hat, the best approach for a doctor to take would be to suggest that the parent give it a try.

      Ethically, the best approach for any physician is to advise parents to steer clear of unproven therapies. Gluten free/casein free diets are expensive and difficult to maintain and–as the one double blind study that’s been done suggests–if they are useless, then they are making fools of desperate parents who should be seeking legitimate therapies.

      Besides, with all that kids on the spectrum have to face in life, it would be sad to think they have to do it without occasionally enjoying a waffle and glass of milk.

      • Dave June 1, 2013 at 03:32 #

        Gomer,

        So what you are saying is that any time a double blind study has been done on a potential diet, all doctors and parents should accept that one study as the gold standard of proof, and ignore their personal observations, as well as a good handful of other studies and medical tests?

        Even in situations where the double-blind study was done on a very small number of individuals? And even when the study materials raised questions as to whether every potential target group was included?

        Assuming we were talking about a fringe theory like in your tinfoil-hat-and-penny-loafers example, I might even agree with you. Since we are talking about a theory based on commonly observed relationships, I would most likely disagree. The original article describes one such relationship in detail: “Their findings included positive skin test results in 36% of children with autism compared with 5% in a control group of unaffected children…” If autistic children are more likely to have gluten allergy, then it seems like a relatively short leap from there to testing a gluten-free diet on a wide variety of autistic kids.

        If your analogy, you are acting as if there were some clinical research that indicated a possible benefit to penny loafers, short hair, or tinfoil hats. Here is why I found your analogy so tedious and offensive: The original paper by Buie contained the sentence: “Statistically significant higher plasma concentration of IgA antibodies against α-lactalbumin, β-lactoglobulin, casein, and gliadin were found in the children with autistic disorder.” Do you understand why a doctor reading that sentence might suggest that a parent give it a try?

        If not, then why not? Because your statement that the parent might look foolish seems pretty weak. Buie evaluated Knivsberg and D’Eufemia and other studies that showed proven benefits of a gluten-free diet, and he even described the results. It was not clear why he decided to discount them in his conclusion, but he certainly struck a much less conclusive tone than you did.

        After reading the Knivsberg study, I would be much more inclined to err on the side of caution. Even Buie admitted that the main drawback of GFCF research was that GFCF did not work for every autistic individual. Since it is hard to identify which subset would benefit, he came to the conclusion that a GFCF diet should not be recommended as a treatment for all autistic individuals. This is not the same as saying it doesn’t work. As far as your theory that we should also give tinfoil hats a try, that seems like something a troll would say, without bothering to read the article.

        In fact, as you might know, research continues on gluten, glutamate receptors, non-celiac gluten sensitivity, interference with methylation, inflammation that comes from other wheat proteins, gliadin, and on and on… I have previously mentioned that I suspect some of that other research will prove more fruitful than the “leaky gut” theory. Matt has pressed me repeatedly to choose one theory or another, but I have refused, and will continue to do so. I don’t know why it seems to work, but it does seem to work.

        Considering that Matt got all offended that I let a very slight note of sarcasm sneak into my comment, imagine what I must think about yours. Especially considering that all you did was repeat things other people had already said, and go out of your way to repeat them in the most sarcastic and insipid way you could possibly imagine.

        I disagree that it is the doctor’s responsibility to advise patients to “steer clear” of unproven therapies, particularly in those cases where LBRB gets to determine what is proven and what is not. After all, every therapy was “unproven” at some point. Each doctor’s primary responsibility is to research the facts, and make sure the patient (or the legal guardian) is as well-informed as possible on each potential treatment.

        If a patient decides to grasp at straws, the doctor should help them be aware of the odds, to be aware of the preferred methods, and teach them to make evidence-based decisions. A careful reading of literature on the GFCF diet suggests that it does not work for everyone, but it does work for some. If you don’t believe me, read the full text of the Buie article: http://www.clinicaltherapeutics.com/article/S0149-2918(13)00184-7/fulltext

        If my doctor were to suggest that he had read a single study, and that he advised me to “steer clear” of the gluten-free diet based on that single study, i would think he was not taking his responsibilities as a physician very seriously. In fact, I had the opposite experience with one doctor. When we first asked him about the GFCF diet, he said that his general impression was that it was only helpful in cases of celiac. A few months later, he wrote to tell me that he had read up on the subject extensively, and now believed that it might be worth a try. He then advised me not to rely on it too much, and he gave me literature that described how to do a test, and what a positive result might look like.

        We are perfectly aware that some of the progress we have noticed might be unrelated to gluten. One side-effect of the diet is that my wife cooks a much higher percentage of our food from scratch, and so has improved the diet in a number of ways other than just removing wheat. We are eating less pesticides, less preservatives, less refined sugar, and less processed soy protein. We are also eating more protein, more fruit, more veggies, and, oddly, more coconut oil. Any one, or any combination of these, might account for my son’s improved sleep habits, decrease in outbursts, or his new-found ability to stay on task for minutes at a time.

        Or it might be totally unrelated. But let me ask you: If you had these results, would you risk losing them? If you threw the old penny loafers away, and all that progress went away, you would go get new penny loafers, wouldn’t you?

      • Sullivan (Matt Carey) June 1, 2013 at 06:32 #

        “Considering that Matt got all offended…”

        I did? Thanks for letting me know :)

      • LettersHead June 11, 2013 at 12:39 #

        There’s nothing enjoyable about a waffle or a glass of milk if it leaves you in tears on the floor an hour later or with an explosive trip to the bathroom. A gluten free waffle and a glass of almond milk produce as much pleasure and no distress.

        Please allow families with a history of digestive issues (Chron’s, colitis) to treat their autistic relatives with the same individually, results-based care and attention to nutrition and overall health that the rest of us automatically enjoy.

  2. farmwifetwo May 24, 2013 at 12:33 #

    Actually, there is much research being done on whether or not the gut can create autistic ‘behaviour’ in Ontario at both Western and UoG. They are proving it is possible. Also, they are proving that antibiotics may be one of the main causes. But, it’ll be a while yet before they are finished. As they have said “after Wakefield….”

    Personally, I have discovered that unless your child has stomach issues… diahhrea, nightmares/terrors… then there is no point in it. Children with intolerances benefit from food removal to find the intolerance. Telling parents “some autistic children are like that”… is not appropriate. Since that “some autistic kid” was definately stoned until we removed casien protien from his diet refusing to address the issues of diahhrea.. was simply poor behaviour on the part of both the Dev Ped and Dr. Gluten didn’t do anything.

    FWIW… the severe one without the stomach issues…. no change.

    • Sullivan (Matt Carey) May 24, 2013 at 14:31 #

      There is much research. Not much good research. For example, I do not consider the “insert proprionic acid into the brains of rats” (one of the Ontario projects which purports to link autism to a leaky gut) as being illustrative.

  3. lilady May 24, 2013 at 15:36 #

    And, today’s Age of Autism has a new case study authored by Dr. Martha Herbert and Dr. Julie Buckley, which describes a child on a GFCF diet where a ketogenic diet was added for seizure control:

    http://www.ageofautism.com/2013/05/new-study-by-dr-martha-herbert-dr-julie-buckley-in-journal-of-child-neurology-on-autism-and-dietary-.html#comments

    Take a look at the comments by John D. Stone and Farmer Geddon…they’re gems.

    Dr. Julie Buckley has her practice in Ponte Vedre Beach, Florida and she is a DAN! doctor and author of a book about biomedical interventions for *treatments/cures* of autism. She *claims* her daughter’s onset of autism at age four, was caused by vaccines:

    http://www.ageofautism.com/2011/01/dr-julie-buckley-on-treating-underlying-medical-conditions-of-autism.html

    I’ve read the entire case study and can pick it apart easily. What is glaringly obvious at first glance, is that there is no time interval provided on the EEG tracings that were published in the study…i.e. was the very abnormal EEG tracing illustrated in the study done during the postictal state, which may last for 48 hours…or more…when the EEG will be very abnormal?

    Tsk, Tsk, Drs. Herbert and Buckley…why didn’t you provide that information?

    • McD June 13, 2013 at 01:41 #

      The ketogenic diet has long been known to be effective in children with epilepsy.

      http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD001903.pub2/abstract

      With that background, I would like to see a decent study done of the ketogenic diet for children with co-morbid autism. I suspect there would be improvements if seizures were interfering with their ability to play/learn/benefit from behavioral therapy. I doubt non-epileptic kids would benefit, and it seems irresponsible to put this case-study out for parents to start experimenting. Autistic kids who starve themselves are also getting into an often prolonged ketogenic state – there is no remitting of autism in these kids – we would have heard about it by now if ketosis worked for autism.

      I have been on a ketogenic diet for about 6 weeks now (LCHF mostly paleo), after getting results back on the first stage of getting a diabetes diagnosis (if I fail the test again in a few weeks, I will get a formal diagnosis, I am trying to stave that off with lifestyle changes).

      As a side effect I have noticed a huge improvement in IBS symptoms, which have been an issue for the last few years,corresponding with the blood sugar problems. I have not lost much weight (I wasn’t overweight to start with). So I guess the grains were not good for MY gut in the first place. (Paleo removes all neolithic grains, not just those with gluten). I eat meat, most veges, berries and nuts, and I eat well. When I have sorted the diabetes scare out long term, i will add back starchy veges and other fruit. I use a lot of coconut oil which is high MCT.

      But I am still autistic – there has been an improvement in overall mood/anxiety somewhat, but I still have an acute “startle reflex” (which sends my blood sugar soaring – a cortisol response that may have been involved in the onset of this problem in the first place). My asperger traits are as strong as ever, sensory issues, social/communication issues, obsessive focus and difficulty switching activities are as much problems/advantages as ever. I doubt my score has changed :-)

      There is no thought of depriving my fussy eating, severely autistic, lad of his popcorn, pretzels and bread these days. We did a GFDF trial years ago using expensive substitutes, tracking measurements/comments from his teachers who were unaware – none noticed a difference between phases. I did the GFDF trial mainly to show my DH’s family that we HAD looked into it and it was not right for our boy.

  4. Elisabeth Whyte May 24, 2013 at 15:53 #

    If a child has celiac’s disease, or another related problem to digesting gluten, then removing gluten from the child’s diet is beneficial – regardless of whether or not they have autism symptoms. However, if the child does not have Celiac’s disease or a gluten sensitivity, then removing gluten from their diets is likely to have zero positive impacts – regardless of whether or not they have autism symptoms. For some children, removing gluten foods (that taste good!) from their diets runs the risk of causing weight loss and other negative behavior problems (if the kid stops eating!), and is also more expensive (e.g., an increased financial burden on the family, an increased burden on the child in terms of restricting what they can eat when they are on vacation, at school, their friend’s house, etc.). So, it’s not entirely risk free to put a child on a diet that takes out gluten entirely from their diet if they had restrictive eating behaviors to begin with. When you suspect food allergies (of any type), the right thing is to remove the food, and re-introduce it to their diet if removing that food doesn’t have a positive impact for that particular child. However, one blogger describes how his kid’s behavior actually got worse and he basically stopped eating anything when they removed breads and dairy from the child’s diet, which is definitely dangerous and problematic (and in this case, the family did the right thing by discontinuing the harmful diet that was hurting their particular child). http://www.autismmom.net/gluten-free-casein-free-diet/

  5. lilady May 24, 2013 at 16:39 #

    Here, a 3-part interview with Dr. Julie Buckley…with all her *theories* about biomedical/dietary interventions. She’s anti-vaccine to the core of her being, attributing the onset of autism for her own child and the child in her study, to vaccines at age four. (There are quite a few similarities between her child and the child in her study).

    http://www.autismspot.com/blog/Interview-%E2%80%93-Dr-Julie-Buckley-%E2%80%93-Part-3

    It is appropriate now to link to Dr. James Laidler’s foray into GF/CF diets and other biomedical interventions, before he realized it was all quackery:

    http://www.autism-watch.org/about/bio2.shtml

  6. Maria L May 24, 2013 at 22:11 #

    There is a very interesting manuscript about gluten sensitivity
    BMC Med. 2012 Feb 7;10:13. doi: 10.1186/1741-7015-10-13.
    Spectrum of gluten-related disorders: consensus on new nomenclature and classification.
    Sapone A, Bai JC, Ciacci C, Dolinsek J, Green PH, Hadjivassiliou M, Kaukinen K, Rostami K, Sanders DS, Schumann M, Ullrich R, Villalta D, Volta U, Catassi C, Fasano A.

    http://www.ncbi.nlm.nih.gov/pubmed/22313950

    it is worth reading

  7. Maria L May 25, 2013 at 23:00 #

    Well, sorry, not very friendly this format for me. I repeated your post and after I presented my opinion.

    Keep in mind, he isn’t saying there is never any benefit. As a treatment for sensitivity to gluten, there would be. As a treatment for autism, the evidence doesn’t support it.
    It all depends on the individual presentation. Here there is a report that confirm the need of personalized medicine, to consider complexity with the view of system biology at the XXI level.
    J Child Neurol. 2010 Jan;25(1):114-9. Celiac disease presenting as autism. Genuis SJ, Bouchard TP.This case is an example of a common malabsorption syndrome associated with central nervous system dysfunction and suggests that in some contexts, nutritional deficiency may be a determinant of developmental delay. It is recommended that all children with neurodevelopmental problems be assessed for nutritional deficiency and malabsorption syndromes.
    Also note that I didn’t say that one should reject all of DAN because some parts are unproven.First, let’s take the last part–it’s unproven.
    Even when I disagree with the application part- many parts- , the biochemical aspects addressed by Jon Pangborn are very interesting . Unproven what and for whom and in what context what advice and what – if you want- model of autism? All is unproven at this point somehow, where is the high quality evidence with proof weight for sure for all ASD?
    Beyond unproven, some parts are just downright wrong. They are based on an incorrect, obviously false, view of autism. A good example is chelation.
    It all depends if a child diagnosed has or not heavy metals bioaccumulation. This is a whole completely different discussion and I agree that better diagnostic tests are needed- to begin with far before to consider chelation… But to dismiss the problems due to lack of knowledge about how to diagnose it in complex situations is not equal to say that the problem does not exist. To focus in extremisms is not fair. Back to 2004….
    Some aspects carry risks with no benefit. Calling it merely “unproven” is a major understatement.
    Most of the rest is basically guesswork based on a number of poorly formed ideas of autism. Jim Laidler’s discussion is linked to above. He has a good discussion either there or elsewhere of how much of autism alternative medicine is just one or more people’s pet ideas and it gets picked up.
    These are personal opinions, based on anecdote. My personal experience is completely different. Even more I respect very much anecdotes- because there are autisms…as you know there are some people that think that new approaches- such as the Single Controlled Case approach is needed in ASD.
    As to the “let them starve” approach. For a time, there was a belief among alternative medicine practitioners that autism was mitochondrial dysfunction was a cause or a comorbid condition of autism. The idea of starving a kid with mitochondrial dysfunction is pretty horrifying
    I do not know a profesional that thinks that let them starve is an option. To present as paradigmatic an extremism is simply not fair to the discussion. About mito dysfunction as a problem there are ways to test and to know about, under proper advice.

    • Sullivan (Matt Carey) May 26, 2013 at 16:19 #

      I do not know a profesional that thinks that let them starve is an option.

      I have run into more than one professional who has advocated the “let the starve” approach as useful for teaching picky eater autistics to eat different foods.

      These are personal opinions, based on anecdote

      No, these are not. For example, the DAN approach to chelating autistics based on faux “heavy metal poisoning” is based on the incorrect approach that autism is caused by mercury intoxication. That isn’t a personal opinion and it is not based on anecdote. This is a part of the DAN approach and it is wrong. Jim Laidler’s reports are anecdotes–anecdoes of how the DAN community creates their approach. He saw it firsthand.

      It all depends if a child diagnosed has or not heavy metals bioaccumulation

      I have never seen an autism parent discussion which presented the results from a real medical toxicologist. I have seen many (MANY) do-it-yourself parents assume heavy metal intoxication and get mail-order chelators or “natural” chelators. I have seen much faux testing (e.g. porphyrins or hair tests or challenge chelation testing) which is used to support chelation but which is not a way to diagnose heavy metal intoxication. I.e. there are practitioners who subject a child to some test which is bogus and, based on those results, start chelating regimens.

      I have seen chelation regimens applied which are far outside the norms. I’ve read of children chleated for *years*.

      My child would never be subjected to a DAN doctor’s chelation approach. Were I to suspect heavy metal poisoning, I would seek out the best people I could find in the field. People who specialize in diagnosing and treating heavy metal poisoning. People who have years of training and practice. Not people who decided (falsely) that autism is caused by heavy metals and have convinced themselves that some fake test is actually useful. Medical Toxicologists are not that hard to find (http://www.acmt.net/cgi/page.cgi/findtoxicologist.html).

      J Child Neurol. 2010 Jan;25(1):114-9. Celiac disease presenting as autism

      Which is interesting, but not on point. No one says do not treat the medical conditions of an autistic (or anyone else). Celiac can be diagnosed and treated. That’s very different from stating that a gluten free diet is a treatment for autism.

  8. Maria L May 25, 2013 at 23:01 #

    http://www.ncbi.nlm.nih.gov/pubmed/19564647

    the part of the abstract is not my opinion. please see here

    • Roger Kulp May 28, 2013 at 23:34 #

      From the abstract

      This case is an example of a common malabsorption syndrome associated with central nervous system dysfunction.

      This gets to a point I keep bringing up here,because I don’t think it can be stated enough times.Once you have found an underlying cause,especially one that can be treated like this,it stops being autism,and becomes something else.There is a big problem of autistic children,and adults not getting enough of the right medical tests they need to look for possible underlying medical causes.Doctors of all kinds,both DAN! types and more mainstream doctors are guilty of this.

  9. Heather May 26, 2013 at 12:35 #

    Although the AMA has not done double blind studies, families have done plenty of research by eliminating it and seeing huge differences. The amount of people who have gone GF and sees the difference out weights the number of research studies any medical body could do. there are labs like Cyrex that test for the 18 proteins of gluten, so one can determine how sensitive they are too it. Just stop giving people more excuses to say there is no validity in GF by saying there’s no research from the AMA, it’s about feeling better, and there are more people speaking out then ever about how it has changed their lives. we need to support what is out there in research, and get that to the media. The AMA is not the organization who should have the final say as they are fighting it. itshould be the person and their health. doctors should be trained to respect that, as well as educate themselves on the truth of what is out there, insteadof always saying there is no research! Research can be hidden, as well as falsified! listen to your gut!

    • Sullivan (Matt Carey) May 26, 2013 at 16:22 #

      My gut tells me the same thing as my brain: run, don’t walk, away from alternative medical practitioners who claim to have an understanding of autism which they clearly do not.

      “research can be hidden, as well as falsified”? There’s someone interested in hiding research on gluten? “Big Wheat”?

      • Dave May 27, 2013 at 13:00 #

        Matt, It is interesting to see you making sarcastic comments about “Big Wheat”. Wheat is the most heavily cultivated crop in the world, and in the U.S. and Europe, we eat about 180 pounds of wheat per year. (In some countries, the government subsidizes the production or consumption, and the amounts are even higher.)

        Lots of baking, including even vegetarian and vegan alternatives are made from extracted gluten. The wheat grown today is genetically very different from the wheat grown 100 years ago. For one thing, the gluten content is much higher, and the amount of gluten that ends up in our diet has grown by leaps and bounds. Wheat is one of the three most common food sources, by any definition, and it is hardly an exaggeration to say that billions of dollars are at risk each time an ingredient like this is challenged.

        Are you saying that corporations would never endanger public health just to increase their profits? Oh please. We are talking about companies that market beer to children, for heaven’s sake. In 2008, more than 54,000 babies were sent to the hospital because a Chinese company tried to inflate a protein test using melamine. (And the infant formula market is chump change compared to the wheat market.) These people would give pot brownies to their own kids for a billion dollars.

        Are you just saying that more research needs to be done? That seems like a fair position. It also seems like the same argument that tobacco companies used to make.

        Very few people buy into the fringe theories that wheat is evil. Rather is is grown, processed, and sold to us just the same way as hundreds of consumer products. Only more successfully. Wheat ends up in so many final products that you can hardly eat a meal anywhere without getting some wheat. If you check the allergy list at most restaurants, you will find wheat gluten in at least one product that you never expected. Hamburgers, milkshakes, even salad dressing is often loaded with gluten.

        The reason is simple, it is cheap, tastes great, and is slightly addictive.

        Addictive? Sure. In my case it is because I live in a constant sugar/insulin cycle. For many other people, the exogenous opioid peptides find their way through the stomach barrier into the bloodstream, and end up making contact with opiate receptors. To do this, they would have to survive the digestion process, and much medical research has been devoted to the theory that they do not.

        Still, evidence pops up from time to time that gluten exorphins do show up in the bloodstream after ingestion of wheat, at least in subjects with celiac disease. Celiac, of course, is a different animal. For one thing, it is usually characterized by a compromised intestinal lining. It is not proven whether wheat has the same effect on people with healthy, intact intestinal linings. (It is also unproven that autistics with GI problems tend to have healthy intestinal linings.)

        It also doesn’t prove that the exorphins are bad for you. Similar exorphins are found in all sorts of foods, including spinach, for example. Some of these have been shown to improve memory in lab rats, with almost no ill-effect. So we can hardly blame all the world’s problems on wheat. (For one thing, autistic children tend to produce excess beta-endorphin, naturally, without the benefit of wheat.) What we can say is that some of the arguments made against wheat, for certain groups, may turn out to be true.

        Fortunately, there is an easy way to test if the opiate receptors are part of the issue. Naltrexone is available, and its use as an opiate receptor blocker is well-studied. Even though not medically approved for treatment of autism symptoms, there are several studies of naltrexone and autism.. And, overall, the studies lean towards naltrexone being a useful treatment for some kids. It seems most effective in decreasing self-injurious behavior, which is what you might expect, if you believed in the opiate theory.

        It would be interesting to see if children who benefited from naltrexone would be the same (subset of) autistic kids who might benefit from a gluten-free, casein-free diet. I have looked, but have not found any such studies. Maybe someone here can help me with that particular question.

        Let me be very clear again: Even if this were studied, GFCF is not a cure by any definition. For another thing, the genetic conditions that lead to other autism symptoms are not All that means, though, is that wheat is not the root cause of autism. We already knew that. The only question we were trying to decide is can you improve the symptoms of autism, in certain individuals, by eliminating wheat?

        Fortunately, this question has been researched.

        http://www.biomedsearch.com/nih/ScanBrit-randomised-controlled-single-blind/20406576.html

        Oddly, Buie and others decided to read this research and decide that it is not worth the paper it is printed on. Why is that exactly? His paper does not say, but I assume he simply discounted every other study except the one he agreed with.

        This is bad science. It adds to the number of studies that support his conclusion, without actually doing any study at all. All he did was read other people’s literature, and ignore any conclusions he disagrees with.

        I could do the same thing. And, in fact, I have.

      • Sullivan (Matt Carey) May 27, 2013 at 16:09 #

        Not sarcasm at all. Just a simple question. Who is supposed to be exerting influence which is supposed to be keeping the purported harmful effects of gluten out of the medical research. What you’ve done is given the stock answer: there is a lot of money involved. Right. Propose a mechanism whereby the author of the study discussed above is influenced by “Big Wheat”. How about the researchers he relies upon for his review.

        Typically the “Big Pharma” argument is two pronged. First is the “they make lots of money argument”. Then there’s the “there is evidence that they have influenced others”. Left out is the direct evidence that they have any influence on the research in question. For example, “Pharma is a multi-billion dollar industry. Look at Vioxx.” And then vague, if any, statements about the researchers involved in whatever study people are trying to discredit. Without part three of the discussion, I find the argument hollow. You’re version lacks part 2 *and* three of the argument.

        “Are you saying that corporations would never endanger public health just to increase their profits? ”

        Sarcasm? Or straw man? Or both?

        “Oddly, Buie and others decided to read this research and decide that it is not worth the paper it is printed on.”

        Wow. Such contempt. “not worth the paper it is printed on”. How did you come to that judgment? By your own statement, you don’t know how he decided to weigh other studies more. But you jump to the conclusion that he completely dismisses the study.

        ” The only question we were trying to decide is can you improve the symptoms of autism, in certain individuals, by eliminating wheat?”

        Who is “we”? And, why don’t “we” read the abstract above, and/or find the actual article? Because then “we” would see that “we” have built a straw man as Dr. Buie leaves that possibility open.

        “Still, evidence pops up from time to time that gluten exorphins do show up in the bloodstream after ingestion of wheat, at least in subjects with celiac disease. ”

        Ah, so we are back to the opiod excess theory, which I believe you stated above was not the basis for the claims that gluten should be removed from the diets of autistics.

        “Fortunately, there is an easy way to test if the opiate receptors are part of the issue. ”

        The simple method is to test if there are opiods in the systems of autistics. Simple and already performed. Multiple times. People like Paul Shattock (whom you cite in your link above) have claimed that they are present. Multiple other researchers say no.

        “This is bad science. It adds to the number of studies that support his conclusion, without actually doing any study at all. All he did was read other people’s literature, and ignore any conclusions he disagrees with.”

        Right. Tim Buie, a man who has probably performed as many or more legitimate examinations of autistics with GI disease as anyone, who gave this interview, is so biased?

        What you have failed to do is present any research which counters the statements made.

  10. BA May 30, 2013 at 20:35 #

    I’ve worked in the field of pediatric feeding disorders for decades. Many people recommend “starving” or deprivation. It often fails miserably with all children, typical or otherwise. It should never be used in individuals with compromised medical status or low weight/poor growth. A thoughtful approach will take into consideration the child’s current weight/growth status, any GI problems, and eating habits.

    I’ve implemented elimination diets for many children. They have all had food allergies. We identify and remove the allergen. The person usually feels much better but any underlying disorder will still be present.

  11. Liz Mellor June 5, 2013 at 14:29 #

    Does anyone have any comments on Dr Natasha Campbell-McBride’s Gut and Psychology (GAP) theory / protocol?

    • BA June 6, 2013 at 19:23 #

      Smells like a heaping load of BS

    • Chris June 6, 2013 at 22:38 #

      Yes, it works. Just doing her intro diet for a couple of days will bring improvement in digestion, and improvements in behavior followed for my son. In survey of 23,000 parents on autism.com, the specific carbohydrate diet is the biomed intervention with the highest rating. See http://autism.com/pdf/providers/adams_biomed_summary.pdf

      We don’t do it 100% but i always keep carbs very low otherwise his poop deteriorates fast.

    • McD June 13, 2013 at 03:01 #

      She ripped off the Weston A. Price Foundation diet (free from local online sites). Basically she just added an elimination protocol to it. The elimination protocol risks malnutrition, but the full Weston A. Price diet is healthy enough if balanced with commonsense (and you have a stay-at-home parent) – it encourages a wide variety of traditional non-processed foods.

      The major problem with WAP is that some factions (it has chapters world wide, they focus on local food) suggest supplementing infants with foods before 6 months (they should BF only) and they also encourage eating organ meats including brains. Pate is fine, but brains or CNS tissue are a bad idea (mad cow disease, scrapie etc).

      They (WAP and Dr NCM) also maintain you should only use raw milk (they are big on this) – again a really bad idea, especially for kids. Modern cows have been bred for excessively large udders and are prone to infection; organically bred cows suffer quite a lot. My brother-in-law is a New Zealand organic beef/milk farmer, who dropped the milk part – modern cows are not designed for organic milking, it is cruel to the cow and dangerous for the human. One of the most awful things I have seen was a cow suffering from mastitis who could not be given antibiotics, they transfer the worst to a non-organic farm for treatment, but delay this as it wastes an expensive organic cow. They waited too long, and the cow ended having to be shot. If you want raw milk, get your own goat.

      Both WAP and DrNCM are very time intensive for food preparation. Bread is home-made fermented sourdough or sprouted grain, and basically everything is home-made – yoghurt, kefir and the like. Everything is made from scratch. Bone broths (the basis for a lot of recipes and the staple of the DrNCM elimination protocol) take hours if not days of baking bones, boiling, cracking etc.

      As to the GAPS theory – she basically claims that processed food is the cause of absolutely everything that can go wrong with a person. She has no evidence for this. She also claims that processed food and not breastfeeding makes a child vulnerable to vaccinations. This is nonsense. Many child are diagnosed before eating processed food – including my son who was breastfed til 14 months in a junkfood-free home. Looking back, he clearly showed autistic signs while drinking only breast-milk and eating exactly the natural foods DrNCM recommends. She is just laying a huge guilt trip on mothers who can’t BF or use commercial baby foods.

  12. Chris June 6, 2013 at 22:53 #

    The major flaw in this study is mentioned right in the beginning: they tried a gluten free diet, and not a gluten free AND casein free diet. Since both proteins have the same effect, it the study could not find anything else than no effect or little effect.

    What saddens me is that this will discourage parents from trying the GFCF diet, and it is a wasted opportunity for the kids . This diet brought SPECTACULAR improvements in both my children with Asperger and ADHD. Their allergy tests were negative, but we cannot miss the effects when we make an exception and let them have some wheat pastry or ice cream.

    My son with Asperger is successful in regular school and has friends instead of growling in a corner. I will NEVER forget the eye contact i got from him after just 4 days on the diet. i did not want the moment to end but thank god, the bright eyes stayed. My 11 year old daughter with ADHD is depressive and thinks of suicide when she eats 4 pastries in 2 days.

    And regarding malnutrition: wheat has more health detriments than benefits, in this era of Roundup Ready Wheat. As for milk, its calcium is not even well absorbed. My kids dont even need calcium supplements. It seems the green vegetables are sufficient after all.

    Chris

  13. LettersHead June 11, 2013 at 13:02 #

    This is a great discussion and I appreciate all of the thought that has gone into many of the answers. All I can add is that I would not do anything for 13 years if it doesn’t show positive, measurable results, and that is how long my son has been GFCF. He is eats a variety of foods and is healthy, of normal height and weight, and still autistic.

    There is a history of digestive disorders and food sensitivity in our family. It’s a factor.

    I find no benefit to belittling or otherwise dissing parents and physicians who work to find ways to safely treat the symptoms – co-morbid or tangential – of people with digestive problems who also suffer from a disorder for which there is still no known cause (ASD). I am mystified that people fail to understand that anyone who has digestive distress is crabby – and that if your stomach hurts all the time you are crabby all the time. Taking away the pain, especially from someone who can’t express that pain – just always seems like a good idea.

    We will never stop trying to address the many facets of our son’s emotional, social and cognitive development, and, when necessary we will approach any issue the way we always have: assess, adjust, take data, re-assess, and adjust again. It’s a more complicated, data-driven version of parenting but in the end it’s the kind of parenting any child deserves.

  14. McD June 13, 2013 at 02:01 #

    Because of the weight of anecdotal evidence, a lot of parents are going to try GFCF regardless of studies showing limited effectiveness. We did – if only to exclude the remote possibility that it would have any effectiveness – in the face of repeated well-meaning advice from family and friends. Now we say that we tried it and it didn’t work.

    For parents who maintain it is working – have you done a proper reversal? That is introduce one of the offending items for a set time (like a few weeks) and see if outside observers notice a difference. (He nicked a cracker then had a meltdown, is not a proper reversal). If you have not done this, there is no basis for claiming the diet did anything.

    For families who do want to trial these diets – base your conclusions on repeated measurements by people who do not know of the diet changes – teachers and the like. Take a baseline of measurements before you start. Set a finite time – if you are not seeing notable improvement (as measured by outsiders) after 3/6 months it is a wash (and remember all children will improve over time). Also, if you think the diet has done something good, it is important to do a reversal – introduce the gluten or dairy again (if your child is really responsive it may only be to one of these), and again take measurements by people who are unaware. Otherwise you are likely to be attributing natural development to the diet (which I think is what is happening with most advocates).

  15. passionlessdrone June 25, 2013 at 02:08 #

    Hello friends –

    Saw this land the other day, and then remembered this conversation.

    Markers of Celiac Disease and Gluten Sensitivity in Children with Autism

    Children with autism had significantly higher levels of IgG antibody to gliadin compared with unrelated healthy controls (p<0.01). The IgG levels were also higher compared to the unaffected siblings, but did not reach statistical significance. The IgG anti-gliadin antibody response was significantly greater in the autistic children with gastrointestinal symptoms in comparison to those without them (p<0.01). There was no difference in IgA response to gliadin across groups. The levels of celiac disease-specific serologic markers, i.e., antibodies to deamidated gliadin and TG2, did not differ between patients and controls. An association between increased anti-gliadin antibody and presence of HLA-DQ2 and/or -DQ8 was not observed.

    The TL/DR; is, the autism group showed increased IgG antibodies to gliadin compared to the normal group, and this response was increased in children with GI symptoms. Genotyping for alleles associated with celiac showed no relationship.

    There are a lot of quotes on the web from the authors and other researchers saying that this is just a piece of the puzzle, and, not a reason to try a gf diet in and off itself. None the less, it is always to know a little more than we did the day before, so there you go. It is certainly a lot different than finding no difference in gliadin antibodies between the groups, that’s for sure.

    – pD

  16. lilady June 25, 2013 at 07:05 #

    “Does anyone have any comments on Dr Natasha Campbell-McBride’s Gut and Psychology (GAP) theory / protocol?”

    Yes indeed.

    http://scienceblogs.com/insolence/2011/08/01/gaps-in-a-doctors-reasoning-about-vaccines/

  17. Autumn Henderson June 26, 2013 at 03:15 #

    Great explanation…. again… sigh. You never said in your conclusion that it wouldn’t be of some benefit to anyone. How many times do people want to raise a “discussion” and expect a different answer when they are raising a point that you don’t repute. People, read very carefully, “It MAY be of some BENEFIT, but it is not a PROVEN therapy for the ASD population.” Both my son and myself are on the spectrum and we don’t need to be nor want to be fixed. Obviously we are very high functioning, but we do suffer from some negatives. That said, working with a trained therapist to help with anxiety and social skills works for US. I will tell you that for US, messing with UNPROVEN and experimental therapies to look for a CURE to our autism only serves to make our anxieties and self soothing behaviors worse. ASK someone with autism what sets them off and you will get a different answer almost every time. The clear answer that might possibly encompass it all is acute pain/panic do to sensory stimulation…. too much or too little.

    • Autumn Henderson June 26, 2013 at 04:01 #

      FYI, meltdowns can occur as a result of intense emotions… happiness and excitement included. Has anyone thought that perhaps a child with autism (and no proven gluten allergy or sensitivity) could have meltdowns due to being excited by the stimulation of familiar and favorite foods that have been witheld from them??? If all of the other points are valid then let’s give this a thought, shall we? Any of the well meaning parents here ever talk to a higher functioning adult with autism who, perhaps, might be able to communicate for themselves better than a child… to gain a different perspective? We are talking about individuals who are non-communicative and at best have difficulties with traditional communication. Maybe we should TRY to obtain their perspective?

  18. lilady October 3, 2013 at 04:49 #

    More Spam with a YouTube link.

  19. lilady October 17, 2013 at 05:16 #

    (Necromancing) Spam alert above.

  20. dave October 17, 2013 at 09:36 #

    Ha: The spam keeps drawing me back to this article.

    This article was helpful to me because it made me re-think (and re-research) some things I had accepted without proof. Reading back over the comments: My apologies to Matt if I misrepresented your statements. It was not my intent, sorry.

    Another anecdote to add: My son was rolling around on the floor last Saturday during a certain class, to the point where I pulled him from class and asked him what was going on. He could not answer, of course, but we started going back over his food log to see if we found any red flags.

    The only missing entry was Friday night, where he was at a party for several hours. We asked him if he had gotten cake at the party, and he said “no”. As he remembered the party, though, he grew a big smile, and said: “I love animal crackers”.

    If something as simple as sharing a snack at a kid’s party makes him happy, then I am certainly not going to steal crackers from him. As Halloween approaches, I expect there will be other opportunities for him to get “forbidden” goodies without us knowing about it. For him, that might be more than half the fun of Halloween.

    I doubt any of that will do any permanent damage. In fact, low levels of occasional gluten may help preserve the body’s ability to digest. I have searched around for research on the subject, but searching the internet for real research is like searching the ocean for a message in a bottle.

  21. lilady October 17, 2013 at 20:15 #

    Another necromancing Spammer

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