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Thursday, September 22, 2011

The Gluten and Casein Free Diet - Why do parents go through all of this trouble?

Dietary Intervention is one of many treatments for children with Autism. One diet, specifically the gluten-free and casein-free diet is now wide known as a treatment worth trying.

The reason for placing a child on this diet is best explained in the book, Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research & Recovery by Karyn Seroussi, who states “…a subtype of children with autism break down milk protein (casein) into peptides that affect the brain in the same way that hallucinogenic drugs do. A handful of scientists had discovered compounds containing opiates – a class of substances including opium and heroin – in the urine of autistic children. The researchers theorized that either these children were missing an enzyme that normally breaks down the peptides into a digestible form, or the peptides were somehow leaking into the bloodstream before they could be digested.”

In 1995, when her son was diagnosed, parents on support group websites told her parents had been cutting dairy out of their children’s diets for 20 years already, and that researchers were attempting to prove the connection between dairy and autism. The book also offers in an easy to understand language an explanation of why parents should try the diet.

Casein has a molecular structure that is almost identical to gluten. So, although a child may suffer from casein sensitivity more that gluten or visa versa; it is imperative to remove both from the diet. Casein includes all diary products and all products that contain casein. Parents must read labels carefully; products that include whey have casein in them. Some parents find managing the gluten-free side of the diet more difficult.

Gluten-free requires removing all wheat, rye, and barley out of a person’s diet. Oats have been an item of controversy. Most parents eliminate oats as well to be safe. Often oats are processed in the same mills as gluten grains, and the chance of cross contamination is too great. There are many hidden sources of gluten. MSG, modified food starch, some detergents and soaps may have hidden gluten. Talk about Curing Autism (TACA) has a thorough list of items containing gluten and casein at the website, The list may seem daunting to some parents, but as they continue to read it they will find many of the items listed have never been used in their home.

The Autism Research Institute at offers testimonials, scientific research data and other helpful information for parents considering the diet for their child. ARI states on their website that a remarkable 66% of children put on the diet showed improvement. When parents have over 700 treatment options available, they do not have time to waste on treatments that show 5% or 10% of children improved. It makes sense to try the treatments that have a proven history of success.
Some people attempt to discredit the impact of the diet on improvement in children by the fact no double blind studies have verified what parents have been doing for 40 years. Thankfully, a 2008 study has started to offer the proof. “This is the first study to develop and test a range of double-blind test foods for regular consumption by young children with autism.” The test is funded by Research Autism & The Children's Foundation (
Once a parent decides to put their child on a gluten/casein free diet, getting started may feel intimidating. The single best resource for this parent is another parent who has gone through this same experience. Parents who find another parent in the community who also has a child on a GFCF diet instantly has a person on their side that wants them to succeed. The parent may feel inspired by the other child’s progress and will want their child to do as well. The mentor parent has most likely done investigating already and has a list of must have, safe items for both children. If finding a mentor is not an option, there are many others.

Web sites are available for parents who are overwhelmed by the transition of going GFCF. One website, is a phenomenal resource. The site includes tips on going gluten and casein free, menus, recipes, testimonials, and sells snacks, vitamins and other necessary products. Also offered is a 3 disc DVD set explaining the diet, allergies, supplements, yeast cooking tips and phenols. This disc is helpful for parents starting the diet as well as parents of children who have been on the diet for some time.

Parents who enjoy cooking and baking will find thousands of recipes in the form of online websites and cookbooks. Two books not to overlook are Special Diets for Special Kids: Understanding and Implementing Special Diets to Aid in the Treatment of Autism and Related Developmental Disorders and Special Diets for Special Kids Two, both by Lisa Lewis, Ph.D. The third book parents will find helpful is, The Kid-Friendly ADHD and Autism Cookbook: The Ultimate Guide to the Gluten-Free, Casein-Free Diet , by Pamela Compart M.D. and Danna Laake, a nutritionist. Some websites that offer gfcf diet recipes are,, and

Parents who do not like the idea of cooking two separate meals three times a day will appreciate companies such as Your Dinner Secret. At their website, parents can purchase pre-cooked, pre-assembled meals. A wide variety of foods are offered, from homemade Ketchup to Shepard’s Pie to Mini-Bundt Cake. Pre-cooked meals are an option for rushed family dinners. This option also can add variety to a diet that may sometimes feel limited.

Purchasing pre-cooked items are also available at supermarkets and specialty food stores. While the items can be more expensive than the regular items made with gluten, many times the convenience is worth it. Pizza crusts, bread items, rolls, waffles, and cereal are only some of the items offers on grocery store shelves. Any item made with gluten flour can be made using gluten-free flour. Parents should not feel their child will be lacking in the food available on this diet.

This diet costs money, but the health of the children can’t be measured in dollars. For parents in the United States, there are agencies that can help with the cost of specialty foods. In New York, for example, the WNYDDSO and Agape Parent’s Fellowship are a few such agencies. Eating healthy can save money in health care costs, prescriptions, and promotes a more active generation of little ones. Many parents of children on the Gluten and Casein Free diet are convinced their children eat better than their peers. In an age of childhood obesity, how can increasing the percentage of fruits and vegetables in a child’s diet be seen as unhealthy?

Finally, an answer to the ‘why’ question. Why do parents go through all of this trouble? Parents feel they must do something to fight against the normally depressing future given to them by the doctor giving the diagnosis. Some parents wait 6 months for an appointment for testing. Are they to sit and watch their child slip further away into themselves, giving up a possible 6 months of improvement. No! They fight. Proving the doctor wrong becomes their goal. A diet with proper dietician consultation is a noninvasive treatment. If a GFCF diet has a chance of reducing negative behaviors, increasing eye contact, and decreasing tantrums- parents will try it. Three months is all it takes to determine if the diet will help their child. Improvement could be made while waiting for the testing appointment. It is a challenge to implement, but they are up to it. The reward of having a child who reaches his potential is worth any sacrifice to a parent.


Ashley said...

More and more recently I have been hearing that a Dairy-free diet is much healthier for children and adults, both. Great post!