Research & Support

FAQ

You've got questions. We've got answers. These are some of the most "Frequently Asked Questions" on Gluten Ataxia.

What is Gluten Ataxia?

     It is a catch-all name for a neuro-degenerative disease believed to be caused by eating foods containing gluten. Like all cerebellar ataxias, it is characterized by the shrinking of the cerebellum-- the part of the brain that controls body movement. Symptoms include difficulty coordinating movement of the limbs (legs, hands, fingers, etc.) and speech. Cerebellar Ataxia can be sporadic (occurring in a seemingly random or isolated manner) or hereditary (transferred via genes from parent to child, also called inherited ataxia).

     There is very powerful evidence that people with sporadic ataxia can halt and even improve their ataxia by going on a gluten-free diet and lowering their gluten anti-body level.[GREG: footnote Hadjiviassioliou]. In addition, there is strong evidence that some hereditary ataxias may also be related to gluten sensitivities and thus be responsive to a gluten-free diet.

     We must point out that there is controversy in the ataxia research field about whether or not gluten anti-bodies can cause cerebellar ataxia. This idea has not been completely accepted by all members in the neurological field. On this page, we provide the abstracts of the studies for you to decide.

     However, the current medical prognosis for permanent chronic cerebellar ataxia is this: there are no effective treatments and you must simply wait for the disease to slowly take away your brain. We at Ataxia Alternatives feel that there is powerful research evidence that a gluten-free diet for Ataxians with elevated anti-gliaden antibodies is the best bet for fighting this disease.

Gluten ataxia? Why not Brussel Sprouts Ataxia? Or Liver and Onions Ataxia? Why does it have to be gluten? How does gluten cause ataxia? What is the evidence?

     When some people eat gluten, their bodies create anti-bodies, specifically, antibodies that scavenge the gluten molecules. Most people's bodies can simply digest gluten. Some, though, create anti-bodies to the gluten. These anti-bodies are called anti-gliaden antibodies.

     One of the primary pieces of evidence for this theory lies in the study of patients with Celiac Disease. In addition to normal Celiac symptoms many people with advanced Celiac Disease also suffer from--you guessed it--Ataxia. One theory is that many cerebellar ataxians with elevated anti-gliaden antibodies may be people with undiagnosed or perhaps asymptomatic Celiac Disease!

     To summarize, the theory on which these and other research doctors are working is that anti-gliadin antibodies are involved in cerebellar degeneration, and--this is the interesting part--if anti-gliadin antibodies can be removed from the body, or neutralized, then perhaps the shrinkage of the Ataxian's cerebellum can be slowed or perhaps halted. A blood test can determine if you have an elevated anti-gliaden antibody count.

How do I remove the anti-gliaden antibodies from my body?

     First you must find out if your body creates anti-bodies in response to gluten. Have your doctor order a blood test to determine your anti-gliadin anti-body level. There are two types of anti-gliadin anti-bodies, a type G (AGG) or type I(AGI). If either level is elevated then you have what is known as a gluten sensitivity.

     To remove the anti-gliaden antibodies from your body, you must go on a strict gluten-free diet. You must not eat ANY products containing gluten. Even a small amount will cause your body to create anti-gliadin anti-bodies.

     What contains gluten? Basically anything made from or containing wheat, barley, and rye. There are the obvious things like bread, donuts, pasta, cake, pizza and things like that. But there are subtle things like beer, whiskey, soy sauce, teriyaki sauce, barbeque sauce, anything with the word malt in it (malt syrup, malt vinegar, malt flavoring) and most breakfast cereals because they contain malt flavoring or some other non?gluten-free ingredient.

     There are many gluten-free and gluten-ful lists on the internet, and we provide one at our Going Gluten-Free page, but like all lists, there may be mistakes, manufacturing processes and ingredients may have changed, or contamination may occur, so these lists can never be 100% perfect. But they are a good start.

Give up bread? Pasta? Donuts?!?! How will I know if a gluten-free diet will even help me?

     I feel your pain. Right now I would kill for a slice of pizza, commit murder for a tuna sandwich on real bread. Unfortunately, you won't know if a gluten-free diet will help you until you try it.

     Before attempting a gluten-free diet, you need to take the anti-gliadin blood test to see if you have an elevated level. If it is elevated, then you need to go on the gluten-free diet. Reducing the level can take 2 to 6 months. You will need to follow up with additional tests to see your progress.

How hard is it to go on the gluten-free diet? How hard is it to lower my my anti-gliadin level?

     It can be very hard. Just the difficulty of giving up things like bread and pasta is hard. But because gluten sneaks its way into so many products it makes it doubly difficult. (Simple things like candies or vitamins may be dusted with flour on the assembly line to prevent sticking together.) Going out to eat furthers the difficulties because most restaurants are not gluten-aware.

     However, it can be done and is done by millions of people with gluten difficulties. The Celiac community has been dealing with this problem the longest and they have the best advice and experience. In addition, pass a bill next week that will require food makers to label, in plain English, eight of the most troublesome ingredients: milk, eggs, fish, crustacean shellfish, tree nuts, peanuts, wheat, and soybeans.

     For myself, I was told to go on the gluten-free diet in July of 2003. By October I had reduced my anti-gliadin anti-body count from 62 to 1.0. I then moved to Washington for a few months where I couldn't control my diet and I am now in the process to getting retested.