Hi all, is there anyone with gluten ataxia?Please can you say if you are seeing Professor Hadjivassiliou at Sheffield.
And receiving treatment and medication for autoimmunity.
I am interested to know just how many receive treatment other than going "gluten free".
I have already seen the Professor who told me that only those that don't respond to a GF diet receive treatment. Need to weigh up travelling to Sheffield and only to be told 'carry on with the GFdiet'. The blood tests were negative for gluten antibodies as I had been off gluten for nearly 2 years. So self diagnosed. Travelling to Sheffield means at least one overnight stay.
This is a really big deal for me as having an MRI too, which again if told 'you have cerebellar ataxia' is it worth it? Which I have already been told.
Thank you.
New to the site and looking for people's lived experiences
idiopathic cerebellar ataxia
Occasional tremors - experience and \"treatment\" would be highly appreciated 
🤔 Are you saying…you haven’t actually had an official diagnosis of Gluten Ataxia. But..you self diagnosed after having good results from a Gluten Free Diet.
Yes knowing that time was of the essence, someone told me about gluten ataxia and I thought going gf and to see how I responded was worth it. Knew quite quickly by ataxia reducing that I was onto something. Brain fog lifted first then slowly over months the peripheral neuropathy in my feet and legs lifted. Had a private blood test for cross reactive foods and following results went dairy free, rice and buckwheat free too. Rice is in most gf foods. Prof H said I probably have gluten ataxia but no antibodies were picked up as I've been gf for so long and I was not willing to do a gluten challenge which he understood. Apparently a lot of ataxia patients self diagnose. Unfortunately damage to cerebellum cannot be reversed but I have stabilised.
🙂 It’s good to hear you were able identify Gluten was a trigger, and that by being vigilant you’ve seen a such an improvement.
I did wonder if I had Gluten Ataxia myself but I tested negative. Although I still wonder if I have some Gluten Sensitivity..
I can well understand your reasons for not wanting to have official confirmation, I wouldn’t want to introduce triggers knowing what would happen.
I’ve seen posts on Facebook groups from people who have Immunotherapy for Autoimmune Ataxias…but can’t recall anybody specifically mentioning Gluten Ataxia.
Thank you for that. As I understand it the coeliac test, which is done in NHS hospitals, is different for gluten ataxia, which is only done at Sheffield and with it taking a long time to get referred and time is so important. It feels to me that ataxia patients are left a bit on the shelf, perhaps it is because there is no cure, or perhaps I've been unlucky. Whatever with more understanding perhaps things will improve. This is why I have taken so much of my health care upon myself and have lost faith with doctors and neurologists. I'm afraid that things won't improve any day soon!