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Gluten Ataxia Questions

suziq0805

By suziq0805
in Related Issues & Disorders

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suziq0805 Enthusiast
suziq0805
Posted

I have heard of gluten ataxia but thought it just applied to people that struggled with balance. I just stumbled on a couple of internet articles that also suggested gluten ataxia symptoms can include trouble moving muscles. I am a musician and had struggled being able to move my muscles fast enough to play up to the level I knew I was capable of. It wasn't that my fingers wouldn't move, but it was so hard to get them to. Could this be gluten ataxia or did I find a couple of inaccurate articles? I tried googling a bit but wasn't having any luck coming up with articles that I could be totally sure were from credible sources.

Is it possible to have gluten ataxia without celiac? Bloodwork and biopsy were negative but I've been diagnosed with non-celiac gluten sensitivity.

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AVR1962 Collaborator
AVR1962
Posted

I have heard of gluten ataxia but thought it just applied to people that struggled with balance. I just stumbled on a couple of internet articles that also suggested gluten ataxia symptoms can include trouble moving muscles. I am a musician and had struggled being able to move my muscles fast enough to play up to the level I knew I was capable of. It wasn't that my fingers wouldn't move, but it was so hard to get them to. Could this be gluten ataxia or did I find a couple of inaccurate articles? I tried googling a bit but wasn't having any luck coming up with articles that I could be totally sure were from credible sources.

Is it possible to have gluten ataxia without celiac? Bloodwork and biopsy were negative but I've been diagnosed with non-celiac gluten sensitivity.

Tough questions and I am not expert but I have dealt with gluten ataxia for 9 months, and amazing as this may seem I am a piano instructor. The part of the gluten ataxia that I feel the article may be indicating was how the muscle for balance are affected. I would walk into a room and hit my shoulders on the doorjams. Or I would get out of bed and try to walk turning right and my body would be tracking left. Muscles were definately not cooperating in this way. As far as speed and keeping up, perhaps it could be to the ataxia, I blamed it on my foggy brain and just my general ability to maintian my thought processes.

In your case being diagnosed non-celiac with gluten ataxia is makes me again wonder about the testing process. The ataxia was one of the hardest symptoms to deal with and one of the last to leave. You have to be so so so careful and completely free yourself of any possible contact for the ataxia to leave. It's not just a matter of being sensitive. I was on a gluten-free diet for 6 months, had an accidental crumb or two here and there that got me which just kept the ataxia going. For me, I had to get past 4 weeks without CC or glutening before mine went away which is not easy. I went thru my kitchen, changed my make-up, took no chances with spices.

You said you are having trouble getting your fingers to move? Do they feel frozen kind of in a way? Cramping going on in your hands? Any vision issues, eyes jumping on the page of music? It would be my guess that your fingers are moving as fast because the brain still isn't clicking (circuits in the brain) quite as fast as it should be. However, if the muscles feel like they are hardening and cramping, think of a couple options. I will get this hard feeling in my msucles sometimes and my leg won't want to move right or my hands will have trouble functioning properly. I have found a burpless Omega 3,6,9 works very well. If the hands are troubled by cramps potassium and/or magnesium might be able to ease that.

ravenwoodglass Mentor
ravenwoodglass
Posted

If you have gluten ataxia you can still have negative tests for celiac. False negatives are more common than what many doctors think.

It can affect muscle movement as well as balance, at least it did with me. I even had difficulty swallowing by the time I was diagnosed.

If you have had all celiac testing done then it wouldn't hurt to try the diet strictly but do be aware that nerve issues can take a while to resolve.

Takala Enthusiast
Takala
Posted

This is one of the reasons I stopped playing music decades ago, but I also had cervical spine damage and the combination was doing me in, along with some chronic (it's a feature w/ me, not a bug) tendonitis.

I don't have a formal celiac diagnosis, but had enough damage to fill a book, that the Neurologist from Hell

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      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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