I was scrolling through the discussion boards years ago when I ran across one that was talking about how the gluten-free diet really helped their ataxia. I tried it, and I was so shocked that doctors had not recommend I try this years back, it helps tremendously! I get headaches and I’ll shake worse when I take in gluten. That was many years ago, I have been gluten-free now for many many years.
I’m glad you’ve noticed an improvement in symptoms…did you manage to get tested for Gluten Ataxia…
It’s interesting to know…not everybody is positive they simply have gluten sensitivity …I’m not positive myself but I suspect I’m sensitive …
This link gives current information Re testing for Gluten Ataxia
I really don’t remember the year that I saw the post, but as far as I can remember it’s been like 10+ years being gluten-free. So the traditional blood test for gluten will not show a positive for me since you have to be eating gluten for the antibodies to show up in the blood test, and I am not. I am not sure how they test for gluten ataxia but mine is not hereditary mine it’s acquired (A drug overdose) so it might not follow that same course as many.
The traditional test for Gluten sensitivity is not the correct test for Gluten Ataxia. There was a link to the correct test years ago at NAF but it is long gone and I don’t know it - sorry. I’ll see if I can still find it.
Chas…I copied this from the above link
The new TG6 test checks for the presence of the anti-transglutaminase-6 (TG6) antibody in patients presenting with neurological problems thus making a link with gluten sensitivity and coeliac disease as the possible cause of the neurological dysfunction.
This is significant as recent research led by Professor Marios Hadjivassiliou, consultant neurologist at the Trust and published in the Clinical Gastroenterology and Hepatology Journal, showed that two-thirds of newly diagnosed coeliac disease patients had evidence of damage or loss in key sensory areas of the brain even though they had no previous diagnosis or history of neurological problems.
Furthermore, patients who were found to have the anti-transglutaminase-6 (TG6) antibody had notably higher levels of damage in healthy brain cells in specific regions of the brain compared to those without TG6 antibodies.
The test could help hundreds of patients to get vital, earlier diagnosis and treatment of conditions like gluten ataxia.
Years ago when the NAF had a bulletin board for questions and comments, Bear was the moderator and he did a great deal of scientific research. He found that the standard test for Gluten sensitivity was not sensitive for Gluten Ataxia. He posted the correct test which was different and the lab that gave it. I’ve written to the NAF in the hopes that they still have the information. I’ll let you know.