Gluten Ataxia

[KiwiBob]

Hi, can someone with Gluten Ataxia tell me if they have the symptoms all the time and does the symptoms vary.

Thanks

[pinjem]

I have cerebellar Ataxia and it seems it is gluten related. Avoiding gluten has meant a very slow but distinct improvement over the last 2 1/2 years. I am answering as the heat and not enough good sleep, very minor colds etc can make a huge difference. Woke at the start of September when cooler weather started, a different person, not flopping all the time. I 'pay' for just about everything I do, not necessarily with worse symptoms except fatigue. The core of my symptoms stay the same but the above may make them worse. So far, I return to a good level of improvement each time, not worse than the level I may have plateaued at. I have some symptoms all the time, sitting still, looking at my laptop I sometimes forget, move or look down and there they are. Walking outside helps- and if I were able to walk out each day in quiet rural footpaths, I suspect my brain would continue to adapt but not doing it at least once a week with a short walk every day results in losing a bit of ability for a while. The more I walk, the better I am, until too tired! So a bit of variety and yes, the symptoms can vary in intensity of effect.

[KiwiBob in reply to pinjem]

Hi, I seem to be fine when seated. I can watch tv, read a book and drive a car.

It’s when I am on my feet moving around I have the problem.

[pinjem in reply to KiwiBob]

Wheelchair when working?

[KiwiBob in reply to pinjem]

If I have to go back to work I will need a wheelchair to get about.

[coat2003]

I have more or less INTOLERANCE TO WHEAT, NOT FULL BLOWN CELIACS DISEASE. Ataxia, NOT 24/7 minutes of weakness, shakes internal...react badly to worsening temperature...STIFF EVERYWHERE...Actually, the change of season SPOOKS the living daylight out of mee, as fear the worsening...but keep positive, keep exdercising and good diet, vitamins...IT ALL HELPS. cannot be helped, UNLESS MOVE IN TROPICS, or as near as damn it...

[Larobby]

How do you get tested for gluten ataxia?

[pinjem in reply to Larobby]

A GP's surgery can do a simple coeliac blood test. A specialist at Sheffield or London will have other tests, such as specialised brain scanning. Ask to be referred? If you are still eating gluten, get a test straight away, they are useful, not certainly indicative of gluten ataxia, then stop eating it, do both as soon as possible. If you noticeably improve it is worth continuing. I improved straight away but had given up gluten before the blood test so have removed the chance of one indicator. Negative coeliac disease does not mean it might not be gluten ataxia. I am affected by gluten but may still have something else, as I understand it.

[KiwiBob]

I have coelica disease and Osteoporosis. I have been diagnosed with Ataxia of unknown aetiology.

I am at Sheffield Ataxia Centre at the end of next month seeing Dr Marios Hadjivassiliou. I think I have Glutin Ataxia and I am hoping he can confirm this. All I want is closer.