Posted by: Ticktock | July 7, 2009

Autism: Gluten and Casein Diets

My wife and daughters recently visited a cousin who may be on the autism spectrum. The cousin is being seen by early interventionists (incidentally, my mother’s profession), but has yet to be officially assessed.

I was distressed to hear that, despite the fact that this cousin has yet to be diagnosed, my sister-in-law has placed him on a gluten and casein free diet, an unnecessary restriction that is not based on proper scientific evidence. Gluten is a starch protein ingredient in wheat, rye, and barley and casein is a protein ingredient in dairy. Restricting both sources of food can be a challenging, expensive waste of time. More importantly, the diet eliminates important sources of nutrients that must be unnaturally replaced; autistic children on these diets were twice as likely as control group to have weakened bone structure.

I don’t blame any parent for doing whatever it takes to raise a healthy normal child, especially in the light of anecdotes of cures from Jenny McCarthy and her flock of followers. The truth is that there is, as of yet, no cure for autism. Parents who listen to Jenny are placing faith in her claims – she is not basing her advocacy on the facts. The evidence is poor for the efficacy of dietary restrictions for the treatment autism. It’s difficult to design a well-controlled double blind study for this diet, but the one study that met those qualifications, showed no difference between the diet restricted group and the control group.

Ms. McCarthy, whose child may actually have Landau Kleffner Syndrome (not autism), has thrown every possible treatment she can find at her son, including psychic healers. Jenny once claimed that her son Evan was a psychic indigo child (perhaps ready to be enrolled in Professor X’s academy for mutants?). Jenny has a disdain for modern medicine as proven by her crusade against vaccines and her tirades against the doctors who faltered in her son’s diagnosis.

The probable truth is that Jenny and her friends are wrong. Parents who report improvements in their children are probably undergoing confirmation bias, where they select what seems to be progress and ignore behavior that stays the same. Autism can be regressive depending on the age, but most often it’s not – parents will report improvements as their autistic child undergoes speech and behavior therapy. These advancements will happen whether the child is on a restrictive diet or not. Confirmation bias is described in this example of a believer-turned-skeptic, who suddenly reversed his autistic child’s gluten and casein restricted diet without noticing any change in his behavior.

I’m concerned for my nephew. I really hope he is not on the spectrum. Mostly, I hope that my extended family doesn’t fall too deep down the slippery slope of autism quackery because I would be extremely bothered if my nephew were to undergo chelation therapy with a DAN doctor.  You can bet that I’ll be finding a good way to send them the above links; hopefully, without insulting them.

Again, it’s not my place to judge a family’s decisions because I will probably never know their frustration, but in the end, the evidence indicates that restricting casein and gluten will not help an autistic child, and may actually harm him.  I’ll save the anecdotes for the author of “anecdotes-based parenting”. For me and the science-based community, the diet is extreme, possibly dangerous, and lacks efficacy: that’s more than enough reason to speak up and hope that I’m heard.

Update: 1/4/2010 – my nephew is no longer on the restricted diet. There was no change in progress when he returned to a typical diet.

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Responses

  1. Thing is the climate in the parenting world is so odd, that people are restricting gluten and casein for kids not on the spectrum. Just a thing to do and make yourself out as a more informed parent than someone who would give gluten.

  2. You would think that way. Do you suspect one of your kids to be autistic? When the kids are put on this, it is also with supplements and vitamins.You can replace gluten with flax seed read about it.you are the one that is miss informed.allergies cause autistic behavior.kids that improve with this diet may not have true autism.but may have a form allergies.

    • Please cite your source for your claim that allergies cause autistic behavior. I don’t believe you.

      While I appreciate the fact that the kids are put on vitamins and supplements, it doesn’t change my concerns that this diet is potentially unhealthy and certainly inconvenient. Also, vitamins and supplements are expensive when the reasons they are taken are not based on solid science.

      • I’m living it with my daughter.She has not yet been
        assessed to be autistic, she has some autistic signs.we did the diet and found that part of it worked. she can not have dairy.we noticed an improvement she quit banging her head, and flapping her arms.she has the sensory intergration.All autistic children have it.after we took the dairy away the dark circles went away.We as Americans do not eat healthy, most children on this diet under a doctors care are just fine.After three to six months if you dont see a change then you should take them off the diet.

      • Khristen, he asked for the source of your claim, not an anecdote. This is usually a paper published in a journal that has been reviewed by knowledgeable folks (like those educated in biology, medicine, some statistics), and usually includes an explanation of physical plausibility, plus the tests done on several subjects with results.

        This is because the plural of anecdote is anecdotes, not data.

  3. You do well in saying what you think, you are not just talking from what you feel is right, but you have actually researched the information. Perhaps your family will read your article and take notice. There are many more people out there doing more damage than benefit to their kids by trying quackeries like this. it is understandable that if your kid is ill, you will try everything in your power to make him/her better, but you have to do it smartly, knowing that what you do is beneficial because it has been proven, and not because a nut case says so.

  4. Actually the scary thing is that I know parents with perfectly healthy kids who have started avoiding gluten and casein. After all, if some people get really sick from these things, doesn’t it make sense that they would be bad for everyone? And in some groups every behaviour issue becomes a possible intolerance. There is huge misunderstanding of food intolerances and allergies, as well as an unwillingness to admit that maybe our kids’ behaviour is affected by our parenting, or even just that they’re kids!

  5. Parents get so anxious about eating and pooping in their kids– this seems to be an extension.
    I’ve seen more parents than you can shake a stick at talk about behavioral responses to certain foods (let alone sugar and food colorings) that have no biological plausibility… my favorite was a woman who was convinced her child had allergies to milk, soy, wheat, oats, eggs, rye (and a few random fruits just for variety). She had brought her child in to evaluate poor weight gain and “failure to thrive”…

  6. You should not be so quick to dismiss the effectiveness of removing gluten and casein from the diet of a child who has autism. To date there have not been sufficient studies done to either confirm or deny how well the diet works; all of the existing studies are either too short to show any change, too small, or, most importantly, fail to attempt to find the subgroup of children Th autism for whom the diet would be effective.

    Not every child with autism is going to benefit from a dietary change and it is foolish to think that this would be the case. There are many different causes of autism and some forms will respond to diet changes while others won’t. A properly designed study would attempt to take this into account but this has yet to be done.

    Until the proper research has been done it cannot be said that the evidence is poor as it is simply non-existent. This is an area where we desperately need more research to be done but until then we have to go on the best information that is available – and sometimes this means parental reports.

    So take this for what it is worth – I have a set of identical twins girls and younger daughter who all have a diagnosis of autism. The older two twins have benefited greatly from removing casein and to a lesser extent gluten from their diet while the youngest does not seem to need a dietary change.

    We put our twins on the diet based on the advice of an MD (who is not a DAN doctor). The doctor based his recommendations on the fact that both girls had an extremely high level of IGG antibodies that appear to be against casein, a history of bowel issues and bloating, and a history of eczema. We did not start any new therapies or make any other changes at the time we removed casein and gluten from their diets. We removed the casein and gluten from their diets over a six week period.

    During this time both girls showed a noticeable increase in eye contact, a large decrease in “stims”, their bowel issues started to clear up, and their eczema cleared up. The therapists that were working with the girls at the time noticed and commented on the fact that both girls were more alert and payed more attention to their environment – they also included that fact in their “official” reports.

    So in short we saw very good results from the diet with the twins and there were noticeable changes in both girls during the same time period.

    As for the diet causing issues with nutrients – there is not any real information either way. The study that you refer to does not indicate whether the weakened bones are a result of the diet or due to some other factor. It does not have any data about whether the children in question were taking extra calcium or whether the dairy replacement products were fortified with extra calcium. The majority of the dairy replacements currently on the markets (rice milk, juice) have calcium added to help avoid this problem and most of the parents that I know who have their children on a restricted diet give their children extra calcium to make up the difference. So it is premature at best to say that the diet alone leads to a weakened bone structure.

    There is some evidence however that children with autism do not absorb the nutrients from their food as well as they should. There are numerous cases in the literature that make mention of this fact if you go look for them. As an example, all three of my children are borderline anemic and have very low serum levels of iron. This is in spite of eating a diet that rich in sources of iron (ie steaks and other forms of red meat) AND being given an iron supplement.

    So is the problem with nutrients due to the diet or are both the need for the diet and the lack of nutrients related to something else? There is not enough information to say either way – more research is needed.

    Any diet that you feed a child has the potential to be unhealthy. The job of the parent is to attempt to balance out what your child eats regardless of dietary restrictions. Sometimes that means giving extra vitamins to make up for things that the child can’t or won’t eat and sometimes that means coaxing your child to eat their vegetables.

    As I am sure any parent whose child has autism will tell you, they can be extremely selective in what they will eat so in some cases it is much easier and convenient to give them extra vitamins rather than trying to get them to eat something they don’t want to.

    Just my two cents worth.

    • MJ you’re right, a CFGF diet will help some children with autism. This is simple logic, even without the fact that there seems to be a subset of autism associated with digestive problems. Some people have allergies or intolerances that make them feel sick, when that co-incides with communication problems it will create all sorts of behaviours. Take away what is making them feel unwell and those behaviours will improve.

      The problem, and what I think Skeptic Dad is talking about here, is when assumptions are made before any of the tests are in. You had a good reason to try a special diet because your daughters had the IGG antibodies (and I’m really glad it has helped), a possible diagnosis on the autism spectrum is not a good reason. When people try all sorts of things without knowing why it just leads to more problems – at the best you will never know what caused any improvement and so will be stuck with many probably unneccessary and possibly harmful interventions, and at the worst you may begin a quest through more and more dangerous unproven interventions.

  7. We adopted three boys with various forms of autism and appreciate those who would blog on such an important subject. People more than ever need to be informed about autism and what life is like for those so affected since this debilitating condition seems to be on the rise.

  8. This sums it up best:

  9. My brother is suffering from autism,we have tried evrthng from medicines to prayers but nothing worked.We followed GFCF diet for our brother & results are very gud.Me and my family hope that after ppl come to know that a particular person is suffering from Gluten & Casein allergy den he shud follow GFCF diet.

    Commenting on anyones life is very easy but you only come to know the situation wen u r in it.Its more difficult wen u know that ur brother is very intelligent & a genius but cnt perform well coz of this problem den u feel sad n frustrated u try everthng in the world , ppl make fun of it, they laugh n giggle not understanding if it can happen wth him den it can happen wth dem also.


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