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Your Experience With Ataxia

cmoore

By cmoore
in Coping with Celiac Disease

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cmoore Apprentice
cmoore
Posted

I had a question about anyones experience with Ataxia and how long after going gluten free did you notice significant change for the better?

Thanks for sharing.

C. Moore

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ravenwoodglass Mentor
ravenwoodglass
Posted

I had a question about anyones experience with Ataxia and how long after going gluten free did you notice significant change for the better?

Thanks for sharing.

C. Moore

I noticed a great improvement in about 6 months. Mine had progressed to the point where I had no reflexes and needed canes or walls to walk. When given an electromylogram my right leg was basically flat line. At six months I ran up the stairs without thinking and when I realized what I had done I burst into tears. By the time I had been gluten free for 2 years I had reflexes again and now am able to walk normally. It may not take that long for you to get some relief as mine had been progressing since I was a child and I was in my 40's before I was finally diagnosed. Be patient and if you can get an appointment with a PT they may be able to help you progress a bit faster.

cahill Collaborator
cahill
Posted

Mine greatly improved within the first year. Like Raven I had issues since childhood and was in my 50's when I went gluten free.

I dont walk into walls any more ,, not as often as I did anyway :P ,, and this is the first time in a very long time I remember getting thur the winter with out taking a severe fall.

When I get CC from soy I do notice some hand tremors and slurred speech along with other neurological symptoms, but I am not sure if that is from the soy CC( my reaction to soy is mainly neurological ) or if it is remaining damage from the ataxia that is intensified by the neurological symptoms caused by soy CC.

cmoore Apprentice
cmoore
Posted
  • Author

Wow, thanks so much for the information. I'm not having this severe a reaction yet. Until talking to someone who runs a Gluten free store in my town, I was not aware of this. In her case, if she gets Gluten from some source, in an hour or to, she said she is bumping into walls.

For a few years I noticed I had days when words would not come out of my mouth properly ... like being tongue tied. Problems with typing, both with intermittent spasms in my fingers and with just processing information properly. My equilibrium has been getting messed up, Im not falling or anything but I bump in to things now and then. For the most part Ive been able to cover up this so no one notices what Im feeling but I know I need to do this. Ive never had a test, other then when I was 9 years old.... and then the DR. just said I had a mild allergy to wheat. Manifesting in sleepiness or lethargy for the most part. My guess is now at 55, its more severe. I don't have medial insurance right now, so Im just going to work hard to get Gluten free and see how it shakes out. There are other symptoms of course other then Ataxia but I wont go into that part right now.

What you folks replied with so far is great thanks. I have many questions but will not try and post them all at one time and before I read other information on this site. Ill be keeping an eye on this forum for sure.

PS: I hate the brain fog and feeling like my mind is swiss cheese. Even with this, I pent the last 15 years working in the high-tech field where my brain was everything.

sandsurfgirl Collaborator
sandsurfgirl
Posted

Mine went away fairly quickly and I didn't even realize it had gone away until I stubbed my toe. I thought wow I haven't bumped into anything in such a long time! So I'm not sure exactly when it went away. I had so many symptoms I lost track of that one.

  • 10 months later...
cmoore Apprentice
cmoore
Posted
  • Author

I noticed a great improvement in about 6 months. Mine had progressed to the point where I had no reflexes and needed canes or walls to walk. When given an electromylogram my right leg was basically flat line. At six months I ran up the stairs without thinking and when I realized what I had done I burst into tears. By the time I had been gluten free for 2 years I had reflexes again and now am able to walk normally. It may not take that long for you to get some relief as mine had been progressing since I was a child and I was in my 40's before I was finally diagnosed. Be patient and if you can get an appointment with a PT they may be able to help you progress a bit faster.

My God, I shudder to think about all the people on god knows what RX's when its just their gut being trashed by Gluten Good Lord!

tom Contributor
tom
Posted

My ataxia was gone for good w/in maybe 4-6 wks of 100% gluten-free. (It actually first started while I was uninformedly 99% gluten-free)

Barely being able to complete sentences didn't go until I was also soy-free for a couple wks. What sucked was that i'd already done multiple elimination trials of soy over a couple yrs for 3 days, 5 days, a week & it didn't make a difference until I tried 2 wks w/out soy.

D'oh!! Just saw that this thread started 10mos ago! So, Clayton, everything good?

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cmoore Apprentice
cmoore
Posted
  • Author

Ive not really started this in earnest until the last day or so. I just got back on the forum in the last 48 hours. Honestly I found it hard to believe this was Gluten related and as far as SOY thats a whole other thing I never heard of before. As I said on another thread, Im 56 years old now and virtually grew up on vegetable protein which was all gluten and soy. My father has been a vegetarian since he was 17 and our whole family just did things that way. Clearly its caught up to me after all these years. I started having issues with balance about 4 years ago but its been getting worse in the past few months. I have yet to go 100% gluten or soy free. I thought it was all Candida related. My Step daughter and her boyfriend recently went on the paleo diet which by design excludes both gluten and dairy. Perhaps to make is easier for me at the start I should buddy up with them, get some menus and try that out for a while.

Gluten AND Soy wow... I wonder. There have been other issues as well. I think its time to get serious about it. All of you folks have been really great I keep it coming.

Clayton

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