Gluten ataxia

[Guyb]

Hi I’m Guy I’ve been suffering with ataxia for years, I recently had a lumbar puncture and endoscopy at Sheffield under Dr Marios he said I have an antibody to gluten but ruled out celiac disease. I’ve been told to start a gluten free diet.I would like to hear from others please in Huddersfield/west yorks area

[wobblybee]

🙂 I’ve no doubt you’ll be well looked after under the care of Prof Marios.As well as being able to be touch with others here, you might like to contact an ataxia support group more locally.

To find a quick link..google ataxia.org.uk support groups... Scroll down the page to find a few options in your area.

Alternately, log onto ataxia.org.uk and click on ‘newly diagnosed’..click on ‘branches and support groups’ 🙂

[Guyb in reply to wobblybee]

Thank you x

[Leils]

Hi Guy

I live in Midlands now but grew up in Hebden Bridge W Yorks!

There is a FB group for GA sufferers too which is quite friendly

Important to stay off the gluten. I've been off it for several years now. Also have to watch dairy as that can trigger neuro symptoms too

Plenty of meat, fish and veg

I like to use a slow cooker so I can get food ready in morning before I get tired

Separate space for toasting to other household members

[Hidden]

Hi Guyb,

I might have a similar situation to yours, as I've had gluten-sensitivity ataxia for (I think?) about three years, but just recently figured it out. I'd been eating offensive foods for years, thinking I did not have gluten sensitivity because of a test I took. I believe the test was negative because I'd previously been gluten-free (more or less) for quite a few years, but my naturopath didn't tell me that that could have made me have a false negative test. After being told that, I went on a gluten-binge diet. Incidentally, I tested negative for Celiac disease.

But what I wanted to relay to you is that I recently came across an article listing a lot of foods that have proteins which your body might identify as having proteins exactly the same as gluten proteins. When I read the list, I realized they were all foods that seemed to bring on some of my ataxia episodes, and were ones I already knew I was sensitive to. Because I'd never seen them on a gluten list, I assumed that what was happening to me (slurred speech and stumbling) couldn't be gluten ataxia. I immediately eliminated all those foods as well as gluten, and have not had another ataxia episode for a couple of months. (I'd had them pretty regularly.)

I posted the list of foods elsewhere on this site, but if you need me to repost them for you, I will. Some of them sound unusual, such as potatoes and rice. It's not the same thing as cross-contamination, though; it's the proteins themselves, and how your immune system perceives them. I hope this information will help you. If I hadn't found it, I don't think I ever would have known what was giving me trouble, and wouldn't have believed I had this strange condition called ataxia.

I'm glad you're on the right track and are properly diagnosed. Hopefully you're feeling much better by now. Welcome, and best of luck with your health.

[claire01]

I am awaiting an endoscopy at Sheffield as Professor Mario's thinks I may have gluten sensitivity.... I live in Lepton, Huddersfield 😊

[Guyb in reply to claire01]

Hi Claire I’m Guy from Golcar

[smiling1]

I am from that area. I too have been wondering if there's anyone with ataxia nearby