Gluten ataxia worsening

I have gluten ataxia. It is getting worse. In Aug. I accidentally got ahold of gluten. It really took me down. In September the same thing happened again. Both events were due to eating out. I haven’t been able to get back to where I was before August. In Nov. I was showing my grandson how to swing. Something happened in the brain and I had ataxia without gluten. That event was worse and now I have developed tremors and spams in my arms and legs. Has anyone else with gluten ataxia started having ataxia without having gluten? I always thought that being gluten free would make the ataxia go away. But now that doesn’t seem to be the case. Even my vision is being affected. My focusing in on objects is slow. I can look at a digital clock and think it is unplugged
And within a few seconds the numbers come into focus. These types of events are beginning to happen once a week now. Sure would like to hear from others.

Sorry to hear about the new symptoms, Ahbee.

I have always been skeptical of Gluten Ataxia and there is no scientific proof it exists.

However, gluten can cause other problems and if you feel good while gluten-free, you should still continue it.

I, myself, am gluten free mostly and people have said it helps their speech.

Each person is different and some swear by gluten-free. Judge for yourself by how you feel.

I think it is possible you can have some episodes even while GF. Something may have reached the tipping point and has triggered some symptoms. Note all the minor changes and try addressing those with supplements.

Are you taking any medication? This could enhance focus problems.

Get blood tests done to ensure your levels are good.

Good luck,


I started going gluten free when I discovered that I carry two genes, HLA DQ2 and HLA DQ3. the ataxia attacks stopped unless I made a mistake. At that time I also discovered I had Pernicious Anemia. Both of these autoimmune diseases affect the brain. I think you are right about reaching a tipping point. I feel that I am having ataxia for various reasons…tiredness, stress, a cold, etc. I did start a new medication. I will see my Doc in a week and ask her about if is contributing to my vision problems.

I know this was posted awhile ago, but I just now saw it... I've been discussing this same thing with you, Ahbee. Is it still progressing despite your diet? As you know, mine is also. I have also wondered about reaching a 'tipping point' and perhaps once things get started it is kind of like you just have to manage it but it can keep getting worse? I'm also starting to be skeptical about gluten ataxia. I wonder more if people with Celiac Disease or other gluten intolerant issues are more susceptible and at a higher risk for developing ataxia. Perhaps it is linked but not necessarily the cause?