Gluten/Casein Free Diets: Myths and Truths

Written by Kika Young, B.A., BCaBA

Autism spectrum disorders (ASD) are developmental disorders that affect children by disrupting their ability to communicate and interact socially. To reduce a child's symptoms of autism, parents often try alternative treatments such as specialized diets. Lately, the gluten-free/casein-free diet has grown in popularity. Some parents report improvements in autism symptoms with this dietary regimen.

Little research has been done, though, on the gluten-free/casein-free diet for autism. Consequently, many parents wonder whether this diet really does, in fact, make a difference in the symptoms of children with autism.  Some information about gluten and casein is below:

What is Gluten?

Gluten is a protein found in wheat (including kamut and spelt), barley, rye, malts, and triticale. It is used as a food additive in the form of a flavoring, stabilizing, or thickening agent, often as dextrin.

What is a gluten free diet?

A gluten-free diet is a diet that excludes foods containing gluten.   A gluten-free diet is the only medically accepted treatment for celiac disease, the related condition dermatitis herpetiformis, and wheat allergy.

What is Casein?

Casein is a protein that is found in milk and used independently in many foods as a binding agent.

What is a Casein Free Diet?

A casein-free diet is an eating plan in which milk protein (casein) is eliminated by removing all dairy products and all foods containing casein from the diet. It is often, if not always, used in combination with a gluten-free diet.

What is a Gluten/Casein Free diet?

A gluten-free/casein-free diet is also known as the GFCF diet. It is one of several alternative treatments for children with autism. When following this strict elimination diet, all foods containing gluten (found in wheat, barley and rye) and casein (found in milk and dairy products) are removed from the child's daily food intake.

Myth #1: “Anyone can benefit from a gluten-free diet: it can give you more energy and even treat autism.”

• Truth: When it comes to autism, however, the case isn’t so clear-cut. Many children with autism have gastrointestinal problems, and some parents report that their children’s autism symptoms improve when they follow a gluten-free diet (The son of celebrity mom Jenny McCarthy is perhaps the most famous example).  Objective clinical studies haven’t shown that the diet works. Most recently, in May of 2012, University of Rochester researchers reported the results of a well-designed (double-blind, placebo-controlled), four-month study of 14 preschoolers with autism. They found that a strict gluten-free, casein-free (GFCF) diet had no discernible effects on autistic behavior patterns, attention, sleep and other symptoms.

Myth #2: The GFCF diet is “too hard”.

• Truth: The diet can be tricky to begin, simply because there is a fair amount of terminology to learn and a need to retrain your eating habits. But, within a short period of time, you can develop a set of go-to meals and really make a change in your child’s eating habits if they truly are sensitive to gluten and casein within their diets.

Myth#3: The GFCF diet is dangerous.

• Truth: Unless your child has some contraindications, the diet is not harmful. You may need to supplement for vitamins and minerals (but most of us supplement as part of the biomedical protocol anyway).  The GFCF diet suggests the use of organic produce, which would be less toxic and less harmful. It suggests the elimination, or at least reduction, of refined sugar and refined carbohydrates. It suggests an increase of fruits and vegetables, grass fed beef, pastures eggs, etc. Very often the GFCF diet is more balanced than the diet the child previously ate.

Myth: you don’t have to follow the GFCF diet strictly to start seeing results.

• Truth: Because the diet is more of a chemical reaction, medical professionals who support this diet suggest you fully eliminate all gluten and all casein before you will see results. Although some children react quickly to the dietary changes, not all do, and it may take as long as 6 months to see a change. This is not a “quick fix”, it is a lifestyle change. This is where many families “trip up” as they think their child is not responding when in reality they haven’t put the child on the diet fully, never allowing the diet the chance to help the child.

There are tons of myths, and I’m sure I’ve only touched on a few of them about GFCF diets. But I hope some of these answers allow you to weigh the option when considering a gluten/ casein free diet as a biomedical option/treatment for your child with autism.  If you have feedback regarding this diet and whether it has been effective for improving your child’s behavior, please leave a comment below. We would love to hear from you!