I have seen some subtle improvements during my nine months on a gluten free diet; but it appears there is permanent damage. Please do not lose hope by my story as I had suffered with ataxia for 12 years before I started on the gluten free diet just to see if it would help. As you can see from others on this site, no two cases of ataxia are exactly the same in regards to symptoms. For me, I am falling much less than i used to as my head is clearer on the GF diet; and my headaches, while still present, aren't near as intense as they once were. My head was always so inflamed in the past when on the gluten; giving me an intense hang over like headache that made if very heard to think clearly (brain fog). While my quality of life has improved; my ataxia has not really improved at all. Triggers for me are stress, lack of sleep, exercise of any amount and of course gluten. I am a bit short of time right now but would be happy to share more with you if you are interested.
Best of luck, Buffalo Bill
Mom of ataxic said:
Buff, with gluten ataxia, if you never eat gluten again does your ataxia go away? Is it 'repairable'? Or did the gluten cause irreparable damage? Do you mind sharing a bit of your experience with me? I am curious, because my daughter has ataxia and Celiac disease and I would like to know what your experience has been.
Buffalo Bill said:
I have gluten ataxia and suffer from muscle pain and cramping. Am certain it is related to my condition as the muscle soreness peaks when I am having an attack. My neurologist diagnosed me with dystonia; and has treated it with botox injections in my neck which has made a world of difference. Neck had been incredibly sore and stiff but the pain is gone. She says the dystonia causes phantom signals to your muscles; which cause cramping and involuntary movements.
One med that had worked was a muscle relaxer called Lorazepam; but i had to discontinue some time ago as it exacerbated my imbalance issues.