Great to finally find a forum of people in a similar boat to myself.
My name is Helen and I found this forum while looking for information on gluten ataxia. I haven't had an 'official' diagnosis but I've got, or had every symptom that all the articles mention.
My problems started in earnest in August this year when I suddenly, temporarily, lost the hearing in one ear and developed vertigo, tinnitus, nausea and excruciating pain in the ear. My MRI scan showed changes that were labelled as "non specific" and "most likely representing small vessel ischaemic change", in other words they didn't have a clue. At the end of my stay in hospital I was given the diagnosis of labyrinthitis and told that it had 'probably' developed because I had had an upper respiratory tract infection six weeks before.
In retrospect, before my hospital admission there were a lot of other problems that because I was so unwell and didn't really know it, I didn't put together. My balance was terrible, the clumsiness I had had my whole life was getting far worse, speaking was becoming a chore as I just couldn't get the words right, at times swallowing was a mission in itself, the brain fog was getting deeper, I had memory loss, I was always tired and whenever I sat down, I'd fall asleep. I don't know why, but I didn't mention these symptoms when I was in hospital.
This is the strange bit. I had intended to go off gluten again this year after doing the Dukan diet last year and discovering that without gluten I didn't get my annual dose of hayfever but hadn't quite got around to it. When I did finally go off gluten, all my symptoms either disappeared, or got substantially better. I then started reading and was quite shocked to find that gluten was most likely responsible for all the things I'd been putting up with for a lot of years and that if I kept eating it, things would get a lot worse.
I absolutely cannot tolerate gluten at all now, to the point that foods labelled gluten free but slightly contaminated by utensiles etc have me vomiting within an hour, dizzy and feeling awful.
Sorry this is so long winded but so many things have happened that I think I could just about write a book!