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Gluten Ataxia, please share your symptoms.

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Old 01-05-2012, 05:57 AM   #1
Join Date: Apr 2008
Location: MA, USA
Posts: 80
jeffiner71 HB Userjeffiner71 HB User
Gluten Ataxia, please share your symptoms.

For ten years now I have had obvious health problems. I had a blood test for celiac and was told it was positive but a biopsy came back negative. After seven years of vomiting on a daily basis, a gluten free diet stopped it.

However, I still have bouts of other symptoms and gluten ataxia was mentioned to me. I was wondering if any of you have been diagnosed with it, what your symptoms were, when the symptoms started, and how they progressed. I have dizzy spells, right sided facial numbness, right arm and leg weakness. I have actually fallen and often trip over my own toes. Both sets of toes have awful joint pain. I also have pain in the upper part of my right arm. Last night my husband asked me to look at him and told me that my eyes were not looking in the same direction, they drifted when I tried to focus. My right eye has done it for a while now.

I have been tested for heart problems, and recently had surgery on a ruptured disc in my neck hoping to fix some of the issues. It did for a bit but they came back along with vomiting despite my gluten free diet.

I would be very greatful for any information or experience that you would share. Also, if you have been diagnosed, what kind of doctor discovered it?

Thank you

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Old 01-05-2012, 12:09 PM   #2
Join Date: Jan 2012
Location: Southwest, USA
Posts: 2
szaugg HB User
Re: Gluten Ataxia, please share your symptoms.

I have not been officially diagnosed as having Ataxia, but that is what myself and my GP believe I have. The neurologist associated with my insurance is the same one who, before I was diagnosed with celiac disease and had gone to him for vertigo and headaches, essentially told me that if I 'stopped worrying about my health so much' I wouldn't have these problems anymore.

Curiously, eliminating gluten did much more on improving my health than listening to him ever did. :-P

My symptoms are vertigo, clumsiness, slurred speech, tingling in my toe, memory and focus issues, nerve and joint pain down my arms and legs. After going super gluten free, these have all either gone away or gone down to nearly non-existent levels (more on this lower down). If I accidentally get gluten contamination, the slurred speech comes back within 20 minutes and will last for a few hours up to a day or so. The vertigo will come back immediately as well and can takes weeks to get rid of. The memory issues, pain, and tingling stay gone unless I get numerous gluten contamination hits over a period of days. On top of that, now that I have recovered, if I get glutened I notice sensory issues (lights seem brighter, tastes become bitter, touch and sound is a bit overwhelming or unpleasant, so I hate to be in crowds or have noise around me).

All that said? Going gluten free wasn't enough for me to feel better (I am diagnosed as celiac, too). When I went what I consider 'normal' gluten free, where I ate gluten free food and avoided gluten cross contamination, my symptoms did NOT go away. Even when the entire house went gluten free (myself and both kids have to eat this way) and I stopped eating out.

After some research, I found out some important things about gluten ataxia and gluten free foods.
1) All GF food has an allowed amount of gluten, and this allowed amount is always more than zero ppm of gluten. Usually between 20-100ppm, depending on the country you're in. Or, if you're in the USA, there IS no regulation currently regulating our GF label, so the gluten free status of a product depends very much on a company's practices and testing (if they test for gluten ppm, which not all do in the USA). Now, still, this level of gluten is still a very low amount, but it's more than 0.

2) In studies, many celiacs can eat a significant amount of food at these low concentrations of gluten and still remain healthy. Not all celiacs can, but most.

3) This is the kicker. There have been NO studies on what levels of gluten people with GLUTEN ATAXIA can eat safely without symptoms, at least none that I know of. I searched and couldn't find any. I asked at two different celiac research centers in the USA and they didn't know of any studies on this subject, either. And studies of gluten ataxia are finding people with the condition who absolutely do not have celiac disease, so even though it may involve the same issue - gluten - it is not the same disease. Which means the requirements for health may not be the same either. They could be, but as it hasn't been studied, we honestly don't know.

So basically, the gluten free food is aimed at safety levels that are safe for most celiacs. It has not yet been analyzed, safety-wise, for those with gluten ataxia. So is it low enough in gluten for us? No one actually knows.

Now, most of the time, eating GF food has helped people I know with gluten ataxia, but many of them continue to have symptoms. Of the few who have eliminated all or most of their symptoms it was a slow process and took a fair amount of time, months, even years for some. But to make that happen, many of us had to go what I would term 'super' gluten free.

Some switch to processed foods that are made in gluten free facilities and their symptoms go away. Some have to go even further and avoid processed foods altogether and move to whole foods like fruits, veggies, meats, and such. Beans, seeds, grains, nuts, and dried fruit can be tricky to acquire for these folks, as they are often processed in facilities with wheat (these do not have to be labeled in the USA, although some companies do. You have to call up the company to check). Some have to go even further and vet even their produce for any contact with gluten, pesticide-infused wheat bran sprinkled over crops in the field, for example (a grasshopper deterrent, nosema locustae, is typically delivered this way).

For myself, I notice that if a product contains any grains of any kind, or comes into contact with it, I get my vertigo and nerve pain coming back. I don't know if this is due to mild cross-contamination or if I have these neurological reactions to all grains, but avoiding all grains and grain derivatives has been necessary if I want to stay vertigo free.

Medical tests to see if we are doing okay on a GF diet tend to involve the gut, not the nervous system. I have seen people told that they are completely gluten free because their guts have healed, but all that means is that they are gluten free enough for their gut to heal. It still doesn't say that's gluten free enough for their NERVES.

Sadly, that means that we're kind of up a creek as people with Gluten Ataxia, frequently figuring it all out ourselves or with the help of a neurologist, if we're lucky. They are hard to find. I know of someone who was told by her neurologist that gluten ataxia didn't exist. When she showed him the research, he looked it up and was surprised to find out she was right. So then he told her that it DID exist, but he still didn't know anything about it, so he couldn't help her.

That response seems pretty common - not easy to find a doctor who not only knows about it but is either willing or able to help. It might be worth calling up any celiac research centers that might be near you, to see if they have any recommendations.

<Deleted: disallowed info>

Wishing you the best of luck in getting better!

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