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The Background

So what’s all the excitement on this diet? Obviously,”gluten-free” has become quite the hyphenated buzzword lately, and living without this protein found in wheat has become extremely popular in diets promising everything from basic weight loss to helping with chronic disease maintenance. Casein is a term slightly less well-known among most people: it’s a milk protein most commonly found in cow’s milk as well as other dairy products such as cheese. The GFCF diet is based on the idea that since children with autism are highly sensitive (if not allergic) to foods containing gluten and casein, this diet eliminates the “problem” foods. The theory behind eliminating these foods is that children with autism spectrum disorder process the proteins in the gluten and casein differently than other people and so produce peptides, which have an opioid effect; what happens next in their growing bodies eventually results in certain behavioral, cognitive, and speech manifestations. According to this theory, children with autism are believed to have “leaky gut syndrome” — due to a highly permeable intestinal tract or bowel, the produced peptides are able to escape from the digestive tract, cross the intestinal membranes, enter the bloodstream, and go up to the brain. For many of these children, it is believed that their difficulty communicating, combined with their reactions to these foods (including discomfort or pain) causes them to exhibit certain autistic behaviors such as screaming or temper tantrums.

The GFCF diet has become popular among families with children with autism mostly through word of mouth. Again, McCarthy has helped spur this on. As a result of her son’s diet and certain nutritional supplements, McCarthy has publicly stated that she feels her son has “recovered” from autism, (although she also acknowledges that he is continuing with varied therapies). She believes diet and supplements helped her son physically recover to a point at which his body and mind were then responsive to therapies including speech and applied behavioral analysis.

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What Science Has Said So Far

So, you may be asking, where are the medical studies supporting this diet? Unfortunately, there has not been much well-designed research on this diet, and most studies have not shown statistically significant support for this diet as an effective treatment for autism. Furthermore, some studies even emphasize the dangers of following this diet, citing social stigma, the prohibitive cost of buying gluten-free and casein-free products, and potential nutritional deficiencies (particularly calcium and protein) as concerns.

If there is no “good” evidence supporting this diet, why then is it so popular, with between 10% and 30% of parents of children with autism using this diet as a treatment method? Examining how the current research and study methods can be improved gives a peek at why they might not be effective in studying the diet.

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How the Current Research Can Be Improved

*There have not been many (if any) well-designed studies that look at autism and diet (some of the ones I found looked at one patient or the study participants followed the GFCF diet for a matter of days or only a few weeks, which is clearly not long enough to establish long-term results.) More, longer, and larger studies need to be conducted.

*The majority of peer-reviewed, journal-approved studies have to rely on anecdotal evidence as opposed to quantitative: teachers and parents reported positive differences in their children’s behavior as a result of the diet, but this type of improvement is difficult to “measure” in statistical terms.

*Autism Spectrum Disorder’s manifestations are different in each kid, so it is also difficult to measure improvement. For example, for one kid, having one less tantrum a day would be significant, for another, it might not be a huge observed difference. Finding a tool by which to measure improvement in behavior would be essential.

* Studying this diet has inherent difficulties because of its restrictive properties, as summed up by a statement by Web MD: “Unfortunately, eliminating all sources of gluten and casein is so difficult that conducting randomized clinical trials in children may prove to be very difficult.”

Promising Developments

One promising report: online source Interactive Autism Network showed that the GFCF diet is by far the most popular among families with children with autism spectrum disorder, and the preliminary findings were that 82% of reporting parents who followed the GFCF diet expressed improvement in their children. Another survey, conducted by the Autism Research Institute in 2008, showed that 66% of children on the GFCF diet showed improvement. These surveys have yet to been given the golden seal of approval by medical journals, but among families, there is definite cause for hope.

While there is not hard and fast evidence for the inclusion of this diet as part of autism treatment, parents should still consider exploring diet as an option for their children with Autism Spectrum Disorder. Living a GFCF life today is a much more viable option than in years past, as many families with or without autism spectrum diagnoses have found that eliminating these potentially problematic foods has lead to benefits including increased energy, freedom from stomach issues, and mental clarity. With regards to potential nutritional deficiencies, families can find alternative sources for various nutrients. As with many parenting decisions, what experts say “work” is not always the case for individual families. And as with many controversial yet touchstone decisions (such as co-sleeping and breastfeeding) there are two sides to every argument. Hopefully, well-devised, thoughtful research will move faster than the explosion of autism.