Many of our Rett Girls have GI issues or "tummy trouble" as we like to call it. Rett Syndrome is a neurological disorder, and it has long been studied that the gut and brain work hand in hand.
Some Rett Girls have allergies found through blood tests, but when the tests all come up negative for allergies and your Rett Girl is still uncomfortable there may be an intolerance that can't necessarily be detected. In fact, gluten intolerance has been linked to everything from autism to clumsiness to GI disturbances to headaches and many many things in between.
What is Gluten?
Gluten is a protein food in wheat, oats (there is some controversy over whether oats are gluten-free or not, typically oats are contaminated during processing so they are not gluten free unless they have the certified GF stamp), barley, rye and malt. It is also used as a flavoring, stabilizing and thickening agent in many foods. Gluten is one of the most difficult proteins to digest, especially for an already compromised digestive system. We encourage all of our Rett families to research for themselves and consider removing gluten from their Rett Girls' diets.
How do I Start a Gluten-Free Diet with my Rett Girl?
The first and most important thing to understand is that this is a VERY slow process. You need to wean off gluten very very slowly to lessen the "shock" to your daughter's system. Start with the basics. If your family has pasta once a week, consider using a gluten-free pasta in place of a wheat pasta, then maybe switch out the bread from a wheat bread to a gluten-free bread, then change out the cereal to a gluten-free cereal. Keep changing out foods just one week at a time until eventually all the grain has been removed from her diet. NOTE: Be careful when you introduce a gluten-free alternative that you do so with a "healthy" gluten-free food. Yep, that's right, not all "gluten-free" foods are healthy despite popular opinion. Keep in mind that whole grains are best so opt for items made with whole grain: brown rice, quinoa, spelt, buckwheat or almond (or other nut) flour.
Now it's time to work on the "hidden gluten" like the those in some deli meats, salad dressings, processed foods and condiments. These can get a bit tricky. Local health food stores are a GREAT resource. They usually have a large selection of items that are labeled gluten-free (GF). Now even large chain grocery stores are starting to catch on and typically have a designated area and sometimes even a whole aisle full of gluten-free foods. Check Amazon.com as well to save money on many items. Look for the GF label if you're unsure if an item contains gluten or not. Some items that may have hidden gluten are listed HERE.
Remember to start slowly and be patient, it make take 6 months or longer to start to see results in your Rett Girl. Look for less irritability, better mood, attention and focus, more consistent bowel movements, better sleep and clearer skin, but don't expect this all to happen overnight.
What Foods are Gluten Free:
It may surprise you to know that many foods that you are already eating are gluten free and you probably just don't know it. For starters, ALL fresh fruits and veggies are gluten free! Fresh chicken, meat, fish and eggs are also OK for gluten-free diets! For starches: try rice, potatoes and quinoa. Fats are usually naturally gluten free as well - butter, coconut oil and olive oil are all great gluten free options. If you cook from scratch and use whole food ingredients, going gluten free is easy. Or, maybe going gluten free will help you to use more whole food ingredients which is great for the whole family!
Some gluten-free snacks include corn tortilla chips and fresh salsa, potato chips and popcorn! Not a bad start right? Many other popular "gluten" foods have a gluten-free counterpart - think cookies, crackers, etc. many of these foods are now being made with gluten-free flour - but remember, just because they're gluten free doesn't mean they are "healthy." These are still "once-in-awhile foods."
For our Rett girls (and boys) that are tube fed a gluten free diet can be as easy as switching formulas. Some options include Compleat Pediatric by Nestle and Peptamen Junior. If you are or would like to start making your own homemade blended formula going gluten free is as easy as eating gluten free. All you need is to make sure that your ingredients are either whole gluten free foods or have the GF seal and then you're ready to blend away! A great resource to check out is the Blended Food Resource Guide. We strongly urge anyone who may be starting a blended diet to seek the advice of a registered dietitian to make sure that all of your daughters nutritional needs are being met.
Resources:
Thankfully we have LOTS of Rett families who are following a gluten-free diet, and they have helped us set up some great resources to share. We have everything from books to blogs to recipes and even tips on which restaurants cater to a gluten-free diet, and much more. These resources are great for those starting a gluten-free diet or even those who are seasoned gluten-free veterans.
If you are currently using a resource or have a great tip or recipe please share it with us, we would love to expand our resources!
By Bridget MacDonald, RettGirl.org Coordinator
Bridget graduated from Western Michigan University in 1999 with a B.A. in Nutrition. She worked as a clinical, registered dietitian at William Beaumont Hospital and was a program director at the American Diabetes Association prior to having her daughter, Annie, who is diagnosed with Rett Syndrome.
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