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Guest micah

Gluten Ataxia And Other Newbie Questions

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Guest micah

Hi everyone,

I'm still very new, and day 3 gluten free (as far as I know - I'm doing my very best). I'm trying the diet to see if I have any improvement of years of disabling symptoms. I am wondering what gluten ataxia is like? Does it get better after going gluten-free or is it permanent neurological damage? I'm wondering because I can barely walk, but it isn't from pain, but noodle-legs feeling and weakness and spasms. They can only hold me a short period of time before they give out on me. ...along with other symptoms.

I think I'm actually noticing some improvement in my energy level and brain fog day 3, is that possible?

And one more question...is it important to replace all of my pans or can I wash them well?

Thanks for any help,


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Hi and welcome to the boards. You could very well be feeling a resolution of some of the problems after only a few days, but be aware that things are very up and down for many at first.

To answer the ataxia query, I have had ataxia since childhood. It feels like walking on a ship or a tilt a whirl to me. I feel like I am falling over sideways, always to the right. I even held my head tilted to compensate for years. It did get much better but will most likely never fully resolve as it was present for so long, over 40 years. I did however get relief from nerve pain and have regained reflexes. Even after 5 years gluten-free I still see some brain related improvement. Nerves repair or take over very slowly. Some of us get complete resolution but some of us will still have problems with the brain damage that was done that lingers. There is no way to tell.

Whether the problems you are describing would be ataxic problems I don't know. They also could stem from vitamin deficincies that will effect nerve impulses and can cause pain and spasms.

The best thing you can do now is to eat as much naturally gluten free food as you can. Keep it simple, fruits and veggies, unprocessed meats, and go with as minamal processing in everything you can. The celiac sprue association has a good starter page for the diet so I am posting a link to it. They also have some other good info on the site.


Call about anything you have doubts about, this includes scripts (generics are the most risky) OTC meds, vitamins, toiletries etc.

Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Hi Micah!

3 days is on the order of my 1st noticing changes, I think. But if I had a witness to tell me no, the ataxia wasn't starting to reduce until day8, well I'd start telling ppl day8.

I was in no condition to file away any memories.

But mine did all get better faster than I could've dreamed.

The Cerebellar Ataxia didn't present, for me, until well after many other regular and other serious effects of celiac were in play.

I think mine was more like yours. Every step an adventure, somehow not having the slightest notion of when or where the foot would again hit the ground.

So I take little steps, but then it's just stumbling/falling forward. Before it got worse I resorted to not being out at any time a cop would suspect a drunk.

Early on, I likened it to walking on a 'riser', like what's used at school assemblies, while ppl kick and yank the riser's legs.

Mine's been gone for years now. It was even one of the quicker of the major problems to completely go away!

LOL oops I just saw that u had said the energy & fog were better on day3, not the ataxia as I started responding. D'oh!! :blink:

In THAT case, I say you're right on schedule!!!!!! Keep it up.

>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03

Dairy-free since 10-04

Soy-free since 5-07

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My ataxia took a full year to go away, but when it did it was like majic. One week I was using a motorized cart in the grocery stores and the next week, I just didn't need one. My legs were no longer wobley or felt heavy. And I stopped walking into things ...

Google gluten ataxia and you'll see several articles by Dr. Hadj.. Notice he states that people with gluten ataxia can have leg, arm and ocular ataxia. My vision doesn't get fuzzy as often and definitely not as bad when I walk either ...

Oh, I noticed by the end of the first day gluten-free, that I was no longer hyper all the time. Kind of a buzzing feeling really ...

Best wishes ... marcia

Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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Guest micah

Thanks very much. I'm on day 5 now and I noticed yesterday that for the first half of the day I ws feeling some energy which I usually never have. It made me feel so happy. But the last half of the day I crashed. But I was so happy to have some energy I probably overdid it. Thanks for the information. I would love to be able to walk again besides just around my house.

I get the buzzing feeling too, like all of my muscles are vibrating. At least I have a little hope now.

:) Micah

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