Note: This article was originally published in 2009. It has been updated with comments from Patricia Novak, MPH, RD. Her comments are in italics. Patricia is a dietitian at Professional Child Development Associates in Pasadena, California, She has over 30 years of experience working with children with developmental disabilities and chronic illness. Her work experience has included hospital inpatient lactation support and outpatient clinics (High Risk Infant, Spina Bifida, Teenage Eating Disorders); early intervention; school based nutrition clinics; interdisciplinary feeding teams; development of weight control program for children with autism spectrum disorders ; university and professional education . Her focus has consistently been on supporting families and children with eating challenges in enjoying mealtime experiences. 

My note: In my opinion it is very important for children with autism to be tested for celiac disease BEFORE they are started on a gluten-free diet.

The best journal article I have read on the gluten-free casein-free diet for autism was published December 2008 in Nutrition in Clinical Practice. The author, Jennifer Harrison Elder, PhD, RN, FAAN has worked professionally with children with autism for 25 years.

As the article points out, autism is now diagnosed in 1 out of every 150 children (2014 update: according to the CDC 1 in 68 children has been identified with autism spectrum disorder). There remains no clear cause or cure and treatment often consists of scientifically unproven methods.

One popular treatment is the gluten-free casein-free diet. Unfortunately, there is little scientific evidence to support its practice.

In this review article, Dr. Elder is very pragmatic in her approach. On the one hand she stresses the need for more research to “provide credible scientific evidence for families to use when making treatment decisions.” On the other hand she understands parents and caregivers want treatment options “now” and their justifiable interest in the gluten-free casein-free diet.

In addition to reviewing available medical literature and recommending areas for future research, she provides a framework for implementing the gluten-free casein-free diet. She asks medical care providers and parents/caregivers to ask themselves several questions when making a decision regarding whether to place a child on this diet. These questions include:

–Does the family have the resources to purchase foods in a gluten-free casein-free diet that are often more expensive, and are these foods readily available? Patricia: Availability is not as much of an issue now but we find that cost still is a problem (autism is over-represented in lower income populations) as is acceptance.

–Is there a commitment by at least one family member to keep accurate daily records of food intake and behavioral change? Patricia: Tracking change on the diet can also be difficult as many of the children are participating in multiple therapies that influence behavior.

–Are there clinicians and/or researchers in the family’s geographical area who might assist in systematically assessing the gluten-free casein-free diet? Patricia: It is difficult to fund nutrition services to teach how to effectively and safely use the diet. 

–What is the overall health status of the child? Patricia: Autism has fellow travelers that may be influencing a child’s health. 30% of kids who are born prematurely go on to develop autism, about 30% have seizure disorders, mitochondrial disorders and allergies (30% of kids with autism) are also more common.

–Does the child have a limited food repertoire that, if further limited by the gluten-free casein-free diet, might result in a dangerously compromised nutrition status? Patricia: While kids with autism usually show appropriate growth and weight gain, their diets often are lacking in the variety necessary to promote health.  They are at risk for nutrient deficiencies. There have been studies that have shown porous bones in kids on the CF diet. 

Dr. Elder agreed to answer some questions for us.

Despite the limited research available on the gluten-free casein-free diet, do you think this diet is promising as a viable treatment option for some children with autism?

I learned early in my career to listen to parents. They know their children better than anyone. That said, we must pay attention to hundreds of parents who are convinced that the GFCF diet helps their children. We have a responsibility as scientists and clinicians to continue investigating the effects of this diet systematically, in well-controlled trials. We also need to be aware that because we currently don’t have a cure for autism, there is the potential for a parental “placebo effect”. That is, parents really NEED to believe they are dong something to help even if there’s no scientific data to support that it is the diet that is making the difference.

Patricia:  Dr. Elder says  this very well. In her own work she pointed out that many parents continue with the diet after their participation in her research despite the child not showing a response to the diet that was significant.  Other researchers have suggested that the changes are not what is often measured with validated tools but parents may notice differences such as being less aloof, greater use of toys, etc.  But the question remains–could this be a placebo effect?  In our program, one 4 year-old child responded to her name for the first time when she tried the diet, that was clearly very powerful and was sufficient for her mother to continue with diet. She tried many other interventions and that was the only indicator of success.

Are there certain children with autism that you see benefiting more from this dietary protocol than others?

Clinically, I have heard that children who may benefit most from this diet are those who have gastrointestinal problems such as unusual and inconsistent bowel movements. Although, once again, this is based on anecdotal reports from parents and not empirically supported at his time.

Patricia: This is what we have seen in our clinic and we do recommend a diet trial for kids who have unusual bowel problems, history of colic, family history of allergies.  The research that has come out since this discussion with Dr. Elder does suggest that there are unique GI issues and immune issues in kids with autism that supports diet trials for SOME kids.

In your experience, what percent of children who try to follow a gluten-free casein-free diet successfully are able to do so?

I estimate that less than 30% of those who attempt the diet remain on it.

Patricia: I think we see a higher number than that stick to the diet but it maybe due to our population (in California). I am not sure if Dr. Elder based this on her research families who may not have been the ones to decide to initiate the diet.  For the families who have intitiated the diet, we find more than 30% who stick with it. The question is HOW LONG do they stick with it.  There is also some question over the length of time needed to be on the diet which is understandable given that the reason why the diet works for some kids is not known. We have had some families where the child has been on the diet for years and it has been successful.  Often what happens is that a child is having goldfish crackers every day at school and no one noticed a change in function or behavior. In that situation some parents begin to add back gluten slowly or just stop the diet.  On the other hand, we also have kids who have accidental exposure and just shut down and then it is clear that the child needs to stick to the diet.   I don’t think there has been any research that has looked at length of time on the diet. 

What are the biggest constraints to successfully following this diet?

Many children with autism have restricted food repertoires and do not have adequate nutrition when their diets are further restricted. It also is hard to implement the diet in families where there are other children who aren’t on the diet. Sometimes that means getting special locks for cabinets and refrigerators, being very vigilant around the clock, and working closely with school personnel to ensure compliance at school. The diet can also cost more and requires extra effort related to preparation and shopping. Although there are some families who have successfully made this part of their lives and report that once they adjusted, it’s not a burden.

Patricia: In addition to these points, often if a child omits a food from their diet, they will not add it back.  So if the diet is not successful, it may be difficult to return to what foods a child had been eating. Similarly, it is often hard to add new foods to the diet.Children are very sensitive and will not usually accept variations in preferred foods, for example will accept chicken nugget but not a GF nugget. 

Thank you Dr. Elder! And thank you to Patricia for her additional comments.

All who come in contact with children with autism are encouraged to read this article. The abstract is available free through PubMed (Nutr Clin Pract. 2008 Dec-2009 Jan;23(6):581-2). The full article is available for purchase.

Copyright © by Tricia Thompson, MS, RD

Originally published February 2009. Updated February 2, 2011. Updated April 17, 2014

Autism: gluten-free casein-free diet