Autism: gluten-free casein-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. 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?
–Is there a commitment by at least one family member to keep accurate daily records of food intake and behavioral change?
–Are there clinicians and/or researchers in the family’s geographical area who might assist in systematically assessing the gluten-free casein-free diet?
–What is the overall health status of the child?
–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?
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.
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.
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.
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.
Thank you Dr. Elder!
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.
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