Gluten Ataxia

[paul456]

Does anyone have Gluten Ataxia as well as another type of Ataxia ? For the last several weeks I’ve suffered more with Ataxia symptoms after evening meal which lasts for about 30 minutes 🥴

Many thanks

[gossy]

dont know if its glutten related but ive had problems with certain food for years i take omniprozale i have to avoid certain foods and not eat last meal too late at night know its related to ataxia because my Dad was the same

[AtomicBubba]

Have you been diagnosed with Gluten Ataxia as the type of ataxia you have? Because I have coeliac disease and ataxia (don’t know type yet - I’m in the genome project)

[klazien]

In 2005 I was sort of diagnosed. The Neurologist in Liverpool said that by lack of knowing what it is, lets call it Idiopathic Cerebellar Ataxia. No bloodtest or MRI ever shows anything nor has anybody in my family has got anything but Gluten Ataxia was mentioned once many years ago and not looked into. For many years I went to the Ataxia centre in London and Dr. Giunty never mentioned it either.

Now my Ataxia has deteriorated so far that I cannot stand anymore unaided and can only walk a very short distance with a rollator. My speech and swallowing has become bad, I have made several bad falls and still nothing shows.

I am Dutch and my mother was pregnant with me during the last winter in the Netherlands. The hunger winter. Maybe that has something to do with it. But since there is no cure it does not matter.

[Hidden]

Hi Paul,

That describes my experience pretty closely. I never saw a doctor until just before my symptoms started to disappear. They've completely stopped for almost three months, but for three and a half years leading up to that, I had symptoms of slurred speech and losing my balance, and later, a little bit of trouble swallowing sometimes, shortly after eating - usually at night. They lasted about a half-hour to an hour.

I'd thought it was gluten ataxia, but tested negative for celiac disease (with a blood test). Now I wonder whether it was an auto-immune type ataxia. I've had dietary issues for most of my life, which seen to change up every couple of years. When I decided to test for gluten sensitivity, I'd been gluten-free for quite a few years, so ate lots of bread leading up to the test, as is recommended. That's when my ataxia symptoms started to disappear, and now they're gone.

Now my body allows me to eat only bread and meat; I keep trying to put vegetables back in my diet, but continue to react to even a bite. Food intolerance for me is always an issue and a mystery. I've seen many doctors and naturopaths, and had blood tests - no one knows much, other than to suggest different ways of eating. I think I can figure out what and what not to eat at this stage of my life, and am just happy to be in good health and ataxia-free.

I never did see a neurologist because when the ataxia symptoms went away, I cancelled the appointment. For me it was definitely triggered by food, but didn't always seem to be the same food.

I'm hoping my experience may help you figure things out somehow. I think that being on a site like this can be reassuring and helpful when you can relate to someone else's situation. Also, I hope you'll let us know what happens with you and time goes on. Wishing you well...

[wobblybee in reply to Hidden]

🙂 There are numerous different possibilities that can cause ataxia..You might like to read this link..

mayoclinic.org/diseases-con...

[Hidden in reply to wobblybee]

Hi wobblybee,

Thanks for the link (I believe this was meant for me?). I have read that info before, and had tried to identify the cause of my symptoms, but nothing I could find ever lined up very well. The closest I could come to identifying the cause was either an auto-immune type trigger, or an undiagnosed vitamin B12 deficiency, since adding wheat back into my diet apparently caused the symptoms to gradually go away. Bread is high in B vitamins.

I get a blood-draw once a year and it has never shown a deficiency, but on this site I learned that it might not show up on a routine blood test. So maybe it was that. I never drink alcohol, not even a drop, so it wasn't caused by drinking. I'll probably never know what caused the ataxia, but that's okay, now that it's gone away.

Thanks for taking the time to respond. Others who read this might click on that link and have an "aha" moment. I hope so. Take care.

[wobblybee in reply to Hidden]

🙂You might also be interested in this..

nhs.uk/conditions/ataxia/sy...

The symptoms of episodic ataxia may disappear as a person gets older

Copied from the link

[Hidden in reply to wobblybee]

Yes, good point! I'm seventy, so definitely older. 😄