The Truth About the Gluten-Free, Casein-F | Autism PDD

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

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, an adult with autism, says she has been helped by "nutritional supplements together with a dairy/gluten-free and low Salicylate diet." 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 products 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.

The theory is that some people with autism and PDD cannot properly digest gluten and casein, which form substances that act like opiates in their bodies. This "drug" substance alters the person's behavior, perceptions, and responses to his environment, according to this theory. Research in the U.S. and Europe has found substances with opiate activity in the urine of a significant number of children with autism. A doctor can order a urinary peptide test that can tell if proteins are not being digested properly.

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 mostly to treat gastrointestinal problems.

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 children on a GFCF diet, while another study found no significant effects from the diet.

Allen Lewis M.D. wrote in the Autism Society of America publication, Advocate, "Controlled studies of the GFCF diet and the ketogenic diet have indicated improvement. A dietary trial is safe and the best way to determine if dietary restrictions are of benefit."

Medical tests can determine if your child has a sensitivity or an allergy to gluten, casein and other foods. Any pediatrician or a physician from the DAN! (Defeat Autism Now!) list can order these tests before you begin the diet.

Before you consider a change in your child's diet, consult with a physician and nutritionist to make sure you are providing an adequate diet and nutritional supplements, if necessary. Also, please 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) soy, potato, almond and rice milk substitutes available. (Companies listed below). Many of these substitutes 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 stock flour, bread, crackers, cookies, pretzels, waffles and pasta made of rice, potato or other gluten-free flours. There also are several online and mail-order businesses 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, another form of gluten intolerance, now come in casein-free varieties, too. For fun or 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, 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 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 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 autism 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.

tottot33, you might want to move this thread to the Parents section. More people will surf through there...

Personally I can't comment coz I don't practice GFCF diet on my 8 year old autistic boy..... so I remain NEUTRAL on this... please post on this topic i like what u have too say! I agree. Truthfully, NO ONE's body was made to digest these proteins and they are suspected as causative factors in Crohn's disease, Irritable Bowel Syndrome, diverticulosis, and many other common maladies. I've tried removing them from my own diet (going on a week this time around) and it is very hard. Aside from the costs and time it takes to read and discern labels, the cravings are terrible. I see bread when I close my eyes to go to sleep at night. The morphine-like compounds these proteins break down to in the body--casomorphin and gluteomorphin--are truly addictive just like any other opiate, which I've fully realized through my own trials with the diet.

I can share a few things on the GFCF diet.

First, my son who is 3 1/2 now has been glutein and casseine free for a year now. The most difficult part is getting him to take in enough vegetables and fruits to accomodate his nutritional needs. Since he cannot eat the usual kid likely foods (breaded chicken, pastas, etc.) getting him to eat healthy is a nightmare. He'll eat lima beans, carrots, peas, apples, bananas and eggs willingly, and he loves the glutein free substitutes like rice bread and pasta, rice crackers, etc.

The up side to all of this is that a year ago when I first introduced the diet, after two weeks intense changes started happening. He went from about 5 words to about 200 in just two weeks. He also started sleeping through the night and recognizing his own name. These things made my life so much easier!

I cannot give much advise as to how to get a child to eat the foods on the diet if he or she is a picky eater anyway. I got to my son before he knew he could make a choice about what he would and wouldn't eat.

I take his food everywhere and I make special birthday cakes and cookies for special occasions. It's very difficult, but not as difficult as waking up 6 times a night with him crying. Having him say "Hi Mommy" when I walk in to the room is worth the million hours I spend dealing with the diet.