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How helpful is the casein-gluten-free diet?

November 11, 2011 58 comments

 This week’s answer comes from pediatric gastroenterologist, Kent Williams, MD, of Nationwide Children’s Hospital, in Columbus, Ohio—one of 17 sites in Autism Speaks’ Autism Treatment Network.

Many parents of children with autism spectrum disorders (ASDs) report that behavior improves when their children eat a diet free of the proteins gluten and casein. Gluten is found primarily in wheat, barley and rye; casein, in dairy products. Last year, clinicians within Autism Speaks Autism Treatment Network (ATN) investigated the issue and found insufficient evidence of clear benefit.  We called for clinical studies, and these studies are now underway.

While we’re awaiting the results, it’s reasonable to ask what harm could result from trying a casein-gluten-free diet. Certainly, dietary changes can be worth investigating and trying, and many parents report improvements in behavior.  However, until more clinical studies are completed and more evidence of safety and benefit is available, parents who place their child on a casein-gluten-free diet need to take extra steps to ensure they do so in a safe and reliable manner.

First, when parents decide to try a casein-gluten-free diet for their child, I strongly urge them to consult with a dietary counselor such as a nutritionist or dietician. Although it’s easy to find casein-gluten-free dietary plans on the Internet, few parents—or physicians—have the experience and knowledge to determine whether a child’s diet is providing all the necessary requirements for normal growth and development.  Keep in mind that foods containing gluten and casein are major sources of protein as well as essential vitamins and minerals such as vitamin D, calcium, and zinc.

I recommend that parents bring the nutritionist or dietician a 3- to 5-day dietary history for their child (writing down what was eaten and how much) and have this reviewed to determine whether there is a real risk for nutritional deficiency.  The nutritionist or dietician can then work with the family to add foods or supplements that address potential gaps in nutrition.

After establishing a plan for a safe and complete diet, I encourage parents to set up a reliable way to measure their child’s response to the diet. This should start before the diet is begun, with a list of the specific behaviors that the family would like to see improve. Examples might include angry outbursts, inability to sit quietly during class, problems sleeping at night, or not speaking to others.

Next recruit teachers, therapists, babysitters, and others outside the family to help you objectively monitor these targeted behaviors and verify your perception of changes. If you reach a consensus that improvements are occurring, continuing the diet may be worth the cost and effort.

However, one should still question whether the improvements are due to the removal of all gluten and casein from the diet.  The changes might be due to removal of just one of these proteins. For example, some parents report improvement with a casein-free diet, and others report improvements with gluten-free diets.

In fact, the behavioral changes may be due to dietary changes other than the removal of casein or gluten.  For example, the improvement might be due to the fact that the new diet replaces processed foods high in sugar and fat with healthier foods such as whole grain rice, fruits, and vegetables.

These alternative explanations are important to consider because a strict casein-gluten free diet requires hard work and can be costly.  For example, it may be difficult for your child to eat from the menus in a school cafeteria or restaurant. Birthday parties present another challenge. As a parent, you’ll likely be faced with the task of sending or bringing special meals and treats when your child eats away from home.

Autism Speaks ATN continues to support research and clinical improvement endeavors on nutritional and on gastrointestinal issues associated with autism through the HRSA-funded  Autism Intervention Network for Physical Health.

Have a question? Please email us at gotquestions@autismspeaks.org.  Read more news and perspective on the Autism Speaks science page.


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