The GFCF (Gluten-Free, Casein-Free) Diet for Autism Spectrum Disorders
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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. 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 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.
A study published in 2012 said children with autism were seven times more likely to have diarrhea or colitis than kids with no disability.1 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 some kids with autism.2
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. A different study in 2013 found that children with autism were more likely to have antibodies to gluten than typically-developing children, which "could point to immune and/or intestinal abnormalities" in those children.3
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.
Medical tests can determine if your child has a sensitivity or allergy to gluten, casein, soy and other foods.
Before you change your child's diet, consult with your health care provider to make sure you are providing a healthy diet and, if necessary, nutritional supplements.
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, specialty and health food stores. Several online retailers sell GFCF foods and vitamins.
Many 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 food using GFCF cookbooks.
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.
Although many researchers may not believe diet will change behavior, neurologist Martha Herbert M.D. says that, "in children where the diet has helped, many families report a large number of changes, well beyond behavior."7 (Emphasis added).
The Details: Books on nutrition, GFCF recipes
The Kid-Friendly ADHD & Autism Cookbook: The Ultimate Guide to the Gluten-Free, Casein-Free Diet A popular book by two Autism Research Institute 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.
Cooking for Isaiah: Gluten-Free and Dairy-Free Recipes for Easy Delicious Meals by Silvana Nardone, the editor of Every Day with Rachael Ray magazine. Excellent GFCF recipes developed with kids in mind, like S'mores pancakes with marshmallow sauce, and double-decker toasted cornbread and spicy greens stack.
The Autism and ADHD Diet: A Step-by-Step Guide by parent Barrie Silberberg. Her son's behavioral symptoms of autism improved dramatically after starting a diet free of gluten, casein, artificial dyes and preservatives. Her book explains how.
Special Diets for Special Kids. Lisa Lewis Ph.D. combines two of her popular and pioneering books on the GFCF diet into one new volume, while adding more than 200 updated recipes and information on the diet's "positive effects" for kids with autism, ADHD, allergies and Celiac Disease. Our favorites: recipes for blueberry muffins, chicken nuggets and mock macaroni and "cheese."
Eating for Autism: The 10-Step Nutrition Plan to Help Treat Your Child's Autism, Asperger's, or ADHD. This beginner's guide by nutritionist Elizabeth Strickland explores the pluses and minuses of diets (GFCF, Specific Carbohydrate, anti-fungal, Feingold). Charts help you find the correct dosages of vitamins and supplements. Explains how to use an elimination diet to see if your child has food intolerances, sensitivities or allergies, and why food dyes, additives and preservatives may cause problems.
The Autism Cookbook: 101 Gluten-Free and Dairy-Free Recipes by parent Susan Delaine. Besides GFCF, recipes are free of rice, egg, soy, nuts and fish. Easy to prepare recipes for sesame-ginger chicken, Asian noodles, chili and chicken enchiladas. Though it has some baked goods, it does best with family dinner recipes.
Special-Needs Kids Eat Right: Strategies to Help Kids on the Autism Spectrum Focus, Learn, and Thrive. Dietician Judy Converse explains the GFCF and Specific Carbohydrate Diets, among others. Advice on supplements, food substitutions, getting other people to support the child's new diet, and lab tests for intolerances and bowel problems.
The How Can It Be Gluten Free Cookbook: A popular new (2014) cookbook by America's Test Kitchen. Recipes may not be milk-free, although it can be easy to substitive rice or almond "milks."
Nourishing Hope for Autism. Nutritionist Julie Matthews discusses the ins and outs of special diets, including GFCF, Specific Carbohydrate Diet, Feingold and Low Oxalate.
Feast Without Yeast A Complete Guide to Implementing Yeast Free, Wheat Free and Milk Free Living by Dr. Bruce Semon and Lori Kornblum. Contains more than 200 original recipes for people concerned about yeast overgrowth, a digestive problem.
Enzymes for Autism and Other Neurological Conditions. Parent Karen DeFelice says enzymes can help people digest troublesome foods. Some parents use enzymes alone, or in addition to a gluten-free, milk-free diet.
Enzymes and Vitamin / Mineral Supplements
Some doctors and nutritionists in the Autism Research Institute (ARI) biomedical movement recommend enzyme supplements to help some patients digest foods that cause problems for them. Two such practictioners have created a guide, The ADHD and Autism Nutritional Supplement Handbook.
Children with gastrointestinal problems and limited diets may not get all the nutrients they need from food.
A number of ARI practitioners recommend specific vitamins, such as B-6 and methyl B-12; minerals such as calcium, magnesium and zinc; amino acids such as taurine, carnitine and glutamine; probiotics (the healthy bacteria found in yogurt); and essential fatty acids, such as fish oil. Calcium, magnesium and Vitamin D are especially important for children on a casein-free diet to replace nutrients found in cow's milk.
Studies of Vitamin B6 and magnesium supplements for autism have been mixed, but slightly more studies show some benefit from it.5
In The Autism Revolution, Dr. Martha Herbert, the Harvard Medical School neurologist, addresses possible benefits to vitamin B6, magnesium, essential fatty acids and, for sleep problems, melatonin. She recommends a "healthy nutrient-dense, plant-based diet, and avoiding toxins, allergens and infections."
Parents should consult their child's health care provider about diets and supplements.
GFCF vitamins, dietary supplements and enzymes:
OurKidsASD.com carries Kirkman, Houston Enzymes, Enhansa, Nordic Naturals fish oils, Metagenics and other major brands. Free ground shipping on orders over $40 with coupon code FREE.
Vitacost.com has many GFCF brands. Discounted prices, free shipping offers.
Kirkman Labs makes Spectrum Complete and Super Nu Thera multivitamin/mineral supplements.
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