The Gluten-Free, Casein-Free (GFCF) Diet for Autism Spectrum Disorder (ASD)

It has been suggested that peptides from gluten and casein may have a role in the origins of Autism Spectrum Disorder (ASD) and that the physiology and psychology of ASD might be explained by excessive opioid activity linked to these peptides.

What on earth are gluten and casein? Can removing them from my youngster's diet really improve the symptoms of ASD and Pervasive Developmental Disorder (PDD)?

Gluten and casein are getting a lot of attention in the ASD community and from doctors in the "Defeat Autism Now!" biomedical movement. Some parents, doctors and researchers say that kids have shown mild to dramatic improvements in speech and/or behavior after these substances were removed from their diet. Some also report that their kids have experienced fewer bouts of diarrhea and loose stools since starting a gluten-free, casein-free (GFCF) diet. Author and ASD consultant Donna Williams , who has ASD herself, says she has been helped by "nutritional supplements together with a dairy/gluten-free and low Salicylate diet." Some children report no benefits from the GFCF diet. (Salicylates are found in some fruits likes apples and other foods).

Gluten and gluten-like proteins are found in wheat and other grains, including oats, rye, barley, bulgar, durum, kamut and spelt, and foods made from those grains. They are also found in food starches, semolina, couscous, malt, some vinegars, soy sauce, flavorings, artificial colors and hydrolyzed vegetable proteins.

Casein is a protein found in milk and foods containing milk, such as cheese, butter, yogurt, ice cream, whey and even some brands of margarine. It also may be added to non-milk products such as soy cheese and hot dogs in the form of caseinate.

There is growing interest in the link between ASD and gastrointestinal (GI) ailments. A study by the University of California Davis Health System found that kids with ASD born in the 1990s were more likely to have gastrointestinal problems, including constipation, diarrhea and vomiting, than autistic kids who were born in the early 1980s. Some children use the GFCF diet mainly to ease gastrointestinal problems and food allergies or sensitivities.

According to one theory, some children with ASD 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. Some scientists now believe that peptides trigger an unusual immune system response in certain children. Research in the U.S. and Europe has found peptides in the urine of a significant number of kids with ASD. A doctor can order a urinary peptide test that can tell if proteins are not being digested properly.

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

Medical tests can determine if your youngster 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 DAN! (Defeat Autism Now!) list can order these tests before you begin the diet.

Before you change your youngster'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.

Some advocates of dietary intervention suggest removing one food from the diet at a time, so you will know which food was causing a problem. It also is helpful to ask children who do not know about the dietary change if they see any improvement after a few weeks.

It's often suggested to remove milk first because the body will clear itself of milk/casein the quickest. Gluten may be removed a month after the elimination of milk. It may take up to six months on a gluten-free diet for the body to rid itself of all gluten. That is why most advocates suggest giving the diet a trial of six months.

The diet can seem like a lot of work, at first. You must carefully read the ingredients on food packages. Beware of "hidden" casein and gluten in ingredient lists, such as curds, caseinate, lactose, bran, spices or certain types of vinegar. It may be hard to locate a substitute for the milk your youngster loves, although many kids do adapt to the gluten-free, casein-free (GFCF) soy, potato, almond and rice milk substitutes available. Look for varieties that are enriched with calcium and Vitamin D. In addition, many parents provide vitamin and calcium supplements to their kids on the diet.

Many communities have health food stores or regular supermarkets that stock flour, bread, crackers, cookies, pretzels, waffles, cereal, and pasta made of rice, potato or other gluten-free flours. There also are online retailers that sell GFCF foods and vitamins. Also, some web sites list commercially-available foods that are gluten-free and casein-free, such as Heinz ketchup, Bush's Baked Beans and Ore-Ida Golden Fries. Some prepared foods originally developed for children with Celiac Disease, a form of gluten intolerance, now come in casein-free varieties, too. To save money, some families choose to make their own GFCF foods using some of the cookbooks below.

Foods that CAN be eaten on a gluten-free, casein-free diet include rice, quinoa, amaranth, potato, buckwheat flour, soy, corn, fruits, oil, vegetables, beans, tapioca, meat, poultry, fish, shellfish, teff, nuts, eggs, and sorghum, among others.

Author Karyn Seroussi says her son now has no traces of ASD, due in large part to a strict GFCF diet. Some parents report improved eye contact, less constipation or diarrhea, and better behavior. However, other parents do not notice a difference in their kids.

Besides gluten and casein, some parents report that removing corn or soy led to equal or greater improvements in their kids. Because soy protein is similar to gluten and casein, some diet proponents recommend removing it if the youngster seems very sensitive.

Research into the GFCF diet continues. "Although the hypothesis may appear 'off the wall' in many respects, there are a number of pieces of evidence, which seem to support them. The ideas are compatible with virtually all the accepted biological data on ASD and are therefore worthy of consideration. The dietary method must still be considered as experimental and no positive results can be promised or are claimed for every person," according to Paul Shattock and Dr. Paul Whiteley of the British Autism Research Unit at the University of Sunderland, which provides scientific information on the diet.

The Parenting Aspergers Resource Guide: A Complete
Resource Guide For Parents Who Have Children Diagnosed
With Aspergers Syndrome.