Potential Health Benefits

Will removing gluten, casein and soy from my child’s diet really help improve the symptoms of autism and Pervasive Developmental Disorder (PDD)? Just what ARE gluten, casein and soy and which foods contain them? And how hard is this diet, really?!

If you are a parent considering placing your child on an elimination diet for the treatment of ASD, you are likely pondering these questions. You are not alone. Scientists, doctors and the media have all weighed in on the merits of diet in the treatment of autism and, while there are no definitive answers, the fact remains that many parents whose children have been on an elimination diet have reported positive results. These results have been confirmed by doctors and researchers in the field, who say that children have shown mild to dramatic improvements in speech and/or behavior after gluten, casein and, in some cases, soy have been removed from their diet. Many also report that their children have experienced fewer gastrointestinal symptoms like constipation or loose stools since starting a GFCF diet.

According to data collected by the Autism Research Institute (ARI) [Parent Ratings of Behavioral Effects of Biomedical Interventions, February 2008], 66% of parents surveyed stated that their children “got better” on a gluten free, casein free diet. However, it should be noted that some people report no benefits from the GFCF diet. For these individuals, some have found positive results by eliminating other foods to which their child may be sensitive or intolerant, such as soy, corn or eggs, in addition to removing gluten and casein.

What are gluten, casein and soy and where are they found?

Gluten and gluten-like proteins are found in wheat and other grains and starches, including barley, oats, rye, bulgar, durum, semolina, couscous, kamut, spelt and modified food starches. They are also found in malt, some vinegars, soy sauce, flavorings, artificial colors and hydrolyzed vegetable and plant proteins. Many commercial cereals, crackers, pretzels, cookies and cakes contain gluten, and it is often a “hidden” ingredient in deli meats, hot dogs, soups and even vitamins, medications and school paste.

Casein is a protein found in milk and milk products, such as milk, buttermilk, yogurt, cheeses and cream cheese, butter, ice cream, cottage cheese, kefir, whey, milk chocolate, some margarines, and in products containing lactose, galactose, lactalbumin, lactoglobulin, casein, caseinate and caramel coloring. Casein is often “hidden” in foods such as “nondairy” creamers, canned tuna, whipped toppings, salad dressing, fortified cereals, hot dogs and nutrition bars.

Soy is a common allergen and not tolerated by many individuals. Soy can be found in items such as soy beans, edamame, soy sauce, tamari, tofu, yuba, tempeh, miso, boullion cubes, butter substitutes, margarines and natto, as well as textured vegetable protein. Additionally, soy lecithin is a soy fat, not a protein , and therefore can often be tolerated by persons sensitive to soy protein, but some individuals can react to it.

Refer to our “No-No List” for other common sources of gluten, casein and soy.

What is the Science Behind the Diet?

There is growing interest in the link between autism and gastrointestinal (GI) ailments. Studies have shown that gastrointestinal problems, including constipation, diarrhea and vomiting are very common in individuals with autism (as high as 70% in some studies). Scientists and doctors are still debating the reasons for this association. Some believe that it is because of an abnormal immune response (i.e. an allergy or food sensitivity to the proteins in gluten and casein.)

According to another theory, some people with autism and PDD cannot properly digest gluten and casein, which form peptides, or substances that act like opiates in their bodies. The peptides then alter the person's behavior, perceptions, and responses to his environment. These peptides might then trigger an immune response or act directly on cell receptors in the brain. Research in the U.S. and Europe has found high levels of these peptides in the urine of a significant number of children with autism.

Studies are underway to examine the effectiveness of the GFCF diet, which has not yet gained widespread acceptance in the medical community. One recent study found behavioral improvements in children on a GFCF diet, while another study found no significant effects from the diet.

I am interested in learning more about and possibly trying the GFCFSF diet. What should I do next?

Medical tests can determine if your child has a sensitivity or an allergy to gluten, casein and other foods such as eggs, nuts and soybeans. Any pediatrician or a physician from the Defeat Autism Now! list can order these tests before you begin the diet. But most experts agree that the most accurate test is an elimination trial of the food from the diet and then to observe the effect on behavior and gastrointestinal symptoms.

Before you change your child's diet, consult with a physician and nutritionist to make sure you are providing a healthy diet and, if necessary, nutritional supplements. Also, read any of the books and web sites about the diet (listed in our Community Support section). Many doctors suggest removing one food at a time, so you can better track the results of eliminating each food.

Many biomedical practitioners will suggest removing casein first, since the body will begin to clear itself of milk and casein within several days. Many people try going casein free for a month before removing gluten. It can take up to six months to rid the body entirely of gluten, but most people who respond positively to going gluten free begin to see improvements within the first three months.

It is important to note that some children’s symptoms may worsen for several days upon removal of casein and gluten, before beginning to see improvements.