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 get a lot of attention in the autism community and from doctors in the Autism Research Institute’s 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 constipation and diarrhea since starting a gluten-free, casein-free (GFCF) diet.
Author Karyn Seroussi says her son has no traces of autism, due in large part to a strict GFCF diet. Autism advocate 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, teriyaki sauce, flavorings, artificial colors and hydrolyzed vegetable proteins.
Casein is a protein found in milk and foods containing milk, such as cheese, cream, 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 GFCF diet has not gained widespread acceptance in the medical community yet. Studies of the diet have had mixed results. Some studies have found behavioral improvements in children on a GFCF diet, while others have found no significant effects from the diet.
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.
Another study published in 2012 said children with autism were seven times more likely to have diarrhea or colitis than kids with no disability.
In a different study, researchers at Penn State used survey information from parents to conclude that the GFCF diet may improve behavior and GI symptoms in autism.
Some people use the GFCF diet mainly to address gastrointestinal problems and food allergies or sensitivities.
According to one theory, some people with autism 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.
A researcher at the New Jersey Medical School’s Autism Center found that autistic children were more likely to have abnormal immune responses to milk, soy and wheat than typically-developing children, according to Cutting-Edge Therapies for Autism 2011-2012.
Medical tests can determine if your child has a sensitivity or allergy to gluten, casein, soy and other foods. Any physician can order these tests, as can doctors who have attended Autism Research Institute conferences.
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 improvements 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.
You may need to experiment to find a substitute for the milk your child loves. Many kids adapt to the gluten-free, casein-free (GFCF) almond, potato, coconut or rice milk substitutes available. Look for varieties that are enriched with calcium and Vitamin D. Many parents provide vitamin and calcium supplements to their children on the diet.
You can find bread, crackers, cookies, pretzels, waffles, cereal, and pasta made of rice, potato or other gluten-free flours in many grocery, speciality and health food stores. Several online retailers sell GFCF foods and vitamins, including Amazon.
Many “regular” products are already gluten-free and casein-free, such as Heinz ketchup, Rice Chex, 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, you can make your 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, corn, fruits, oil, vegetables, beans, tapioca, meat, poultry, fish, shellfish, teff, nuts, eggs, and sorghum, among others.
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 or does not improve on the GFCF diet.
Research into the GFCF diet continues. A study released in 2010 shows benefits for some kids with autism. “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 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.” A new article by the same authors explores the ways a GFCF diet could reduce autism symptoms.