Fragile X and Food: please hold the MSG

Children with Fragile X Syndrome and related disorders often struggle with dietary issues. One of the first things we did when we suspected Grant had autism (see Our Story), was to eliminate gluten and casein from his diet.

Gluten is a protein consisting of a mixture of glutelin and gliadin, present in cereal grains, especially wheat. Casein is a phosphoprotein, precipitated from milk by the action of rennin, forming the basis of cheese. [Definitions are from dictionary.com.]

Pasta and cheese, along with the common items you see above, are some of the many things eliminated in a gluten-free and casein-free diet. Fortunately, there are many products available now that are gluten-free and some that are casein-free as well.

Some children with Fragile X Syndrome and/or Autism struggle with gastrointestinal issues. One popular dietary move is to eliminate gluten and casein from their diets. Many parents and specialists have reported that it can improve the child's health (ie: reduce stomach aches), increase the ability to focus, and decrease the number of tantrums. It is a lot of work, but if it helps the child it is worth it.

This special diet does not help everyone. Grant was 18 months old when we tried the diet. He was definitely showing a lack of focus but was not having any meltdowns. After trying the diet for two months, I saw no changes in Grant's demeanor. (While many parents have reported seeing results within two weeks, I was told that one must try the diet for at least four to six weeks to know for sure if it will work.)

Wes and Grant having a snack. Grant is eating one of his favorite snacks - plantain chips from Trader Joe's.

A couple things we have and will continue to eliminate from Grant's diet are products that contain dye (especially red #40) and all products that have MSG (Monosodium glutamate - also known as sodium glutamate). These additives can cause a spike in hyperactivity (and, therefore, a lack of focus) in children who have ADHD (Attention Deficit Hyperactivity Disorder - one the symptoms of Fragile X Syndrome).

It wasn't difficult to cut-out dyes as I prefer to cook from scratch and many products use natural dyes that come from food. I do, however, have to be conscientious about MSG. It is in many products (ie: cream of mushroom soup and some seasonings). Also, there are some ingredients that go by a different name but are related to MSG - or at least they are additives that are very similar to MSG. These additives are hydrolyzed corn protein and autolyzed yeast extract (you can learn more at MSG Exposed).

There are so many dimensions to having a child with special needs but I am thrilled when there are tangible ways that I can help my son.

I am always interested to hear about dietary changes or improvements others have taken that have proven helpful. Please share your story with me.