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

What on earth are gluten and casein? Can removing them from my child's diet really improve the symptoms of autism, Pervasive Developmental Disorder or Asperger's Syndrome?

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

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

According to one theory, some people with autism spectrum disorders 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 people. Research in the U.S. and Europe has found peptides in the urine of a significant number of children with autism. A doctor can order a urinary peptide test to see if proteins are being digested properly.

Studies are underway to examine the effectiveness of the GFCF diet, which has not 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.

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.

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 below).

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 people 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 child loves, although many children do adapt to the gluten-free, casein-free (GFCF) potato, almond and rice milk substitutes available. (Companies listed below). Look for varieties that are enriched with calcium and Vitamin D. In addition, many parents provide vitamin and calcium supplements to their children on the diet.

Many communities have health food stores or regular supermarkets that sell 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 people 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 has no traces of autism, 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 children.

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

Research into the GFCF diet continues. A study released in 2010 shows benefits for some kids with autism spectrum disorder. "Our results suggest that dietary intervention may positively affect developmental outcome for some children diagnosed with ASD," according to the study. It was published in Nutritional Neuroscience by a research group that included Paul Shattock and Dr. Paul Whiteley of ESPA Research. "Further studies are required to ascertain potential best- and non-responders to intervention."

The Details: Books, Recipes and Web Sites (return to top)

GFCFdiet.com publishes a list of commercially available GFCF foods, acceptable ingredients, manufacturers' phone numbers and more.

The Kid-Friendly ADHD and Autism Cookbook: The Ultimate Guide to the Gluten-Free, Casein-Free Diet. A popular book by two Defeat Autism Now practitioners, developmental pediatrician Pamela Compart M.D. and nutritionist Dana Laake. Advice for feeding picky eaters, and a good explanation of how and why the diet can work. Recipes include information on calories, protein, fiber, etc., per serving. The revised edition has 100 new recipes plus advice for packing school lunches.

The Autism and ADHD Diet: A Step-by-Step Guide to Hope and Healing by Living Gluten Free and Casein Free (GFCF) and Other Interventions by Barrie Silberberg, mother of a boy with Asperger's Syndrome. Her son's behavioral symptoms improved dramatically after starting a diet free of gluten, casein, artificial dyes and preservatives. Her book shows how.

The Autism Cookbook: 101 Gluten-Free and Dairy-Free Recipes by Susan K. Delaine, who has a child with autism and food allergies. Our favorite new cookbook for family dinners. Besides being GFCF, recipes are free of rice, egg, soy, nuts and fish. Easy to prepare recipes for sesame-ginger chicken, Asian noodles, chicken enchiladas and gazpacho, among others. There are some toddler favorites such as chicken nuggets, hamburger pie, crispy cereal treats and cupcakes, but the cookbook focuses on family foods.
 

Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery by Karyn Seroussi. An excellent book for parents considering a gluten-free, casein-free diet for a child with an autism spectrum disorder. Seroussi's son recovered from autism by strictly adhering to this diet. She discusses food intolerances, yeast and vaccines.

Special Diets for Special Kids: Understanding and Implementing Special Diets to Aid in the Treatment of Autism and Related Developmental Disorders by Lisa Lewis, Ph.D. One of the first books to explain the gluten-free, casein-free diet and how it can help treat autism. Her explanation of the science behind the diet is not as easy to follow as Seroussi's. However, this book has more than 150 recipes for breads, cakes, candy, chili, macaroni and cheese, etc.

Special Diets for Special Kids, Two by Lisa Lewis, Ph.D. A sequel to her first book (above) with more than 175 new gluten-free, casein-free recipes and cooking tips. Recipes for peanut butter bread, bananaberry shake, oven fries, barbequed chicken pie and other foods that kids will eat.

Feast Without Yeast: 4 Stages to Better Health: A Complete Guide to Implementing Yeast Free, Wheat (Gluten) Free and Milk (Casein) Free Living by Bruce Semon M.D., Ph.D., and Lori Kornblum. Contains more than 200 original recipes. Good for those concerned about yeast overgrowth, a problem in some people with autism.

Special Diets for Special People: Understanding and Implementing a Gluten-Free and Casein-Free Diet to Aid in the Treatment of Autism and Related Developmental Disorders. The newest how-to book, with more than 150 recipes, by GFCF diet guru Lisa Lewis, Ph.D.