Gluten Ataxia Questions

[suziq0805]

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.

[AVR1962]

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]

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]

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