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A Request For Those Who Suffer From Gluten Ataxia


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21 replies to this topic

#16 megsybeth

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Posted 16 November 2012 - 09:19 PM

Hi Ollie's Mom,
I first became aware of my ataxia before I was diagnosed, when my son was diagnosed with special needs. I've always been clumsy, prone to dizzyness (low blood sugar was what I attributed it to), and just generally off in my motor abilities, like just a half second off from what others seem to be able to do. And when I started to see my son struggle so early and be identified as so delayed, I could really identify with it. Fiinally my son started having more and more celiac symptoms and I started to push for the diagnosis and also saw it in myself. I think I've had untreated celiac for about thirty years but I'm not as bad off as most people.

I will say that I was lucky enough to see improvement almost immediately after going off gluten, though I guess this is not the norm. A cloud lifted and I just felt awake, grounded, NORMAL. After about three weeks into the diet I was wearing shorts and ran into the living room to ask my husband if he noticed anything different. He looked for a second and said, "You don't have any bruises on your legs".

Why not at least try it? I really don't see why some people see fear it so much.

-Megan
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#17 WinterSong

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Posted 18 November 2012 - 06:40 PM

I have a friend who has gluten ataxia. I'm not an expert on the topic, but she said that going gluten free has changed her life completely, and she will never go back to eating a gluten-filled diet.

Best of luck!
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Diagnosed with IBS - Fall 2007

Diagnosed with Celiac via blood test (tTg off the charts) - March 18th, 2011

Gluten free as of March 25th, 2011 and going strong!

Positive biopsy April 1st, 2011

 

Blood test results back down to normal levels November 2012


#18 Framefunnyfarm

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Posted 19 November 2012 - 11:47 AM

Hi Ollie's Mom,
I first became aware of my ataxia before I was diagnosed, when my son was diagnosed with special needs. I've always been clumsy, prone to dizzyness (low blood sugar was what I attributed it to), and just generally off in my motor abilities, like just a half second off from what others seem to be able to do. And when I started to see my son struggle so early and be identified as so delayed, I could really identify with it. Fiinally my son started having more and more celiac symptoms and I started to push for the diagnosis and also saw it in myself. I think I've had untreated celiac for about thirty years but I'm not as bad off as most people.

I will say that I was lucky enough to see improvement almost immediately after going off gluten, though I guess this is not the norm. A cloud lifted and I just felt awake, grounded, NORMAL. After about three weeks into the diet I was wearing shorts and ran into the living room to ask my husband if he noticed anything different. He looked for a second and said, "You don't have any bruises on your legs".

Why not at least try it? I really don't see why some people see fear it so much.

-Megan

man Megan, this sounds exactly like me.
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#19 Framefunnyfarm

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Posted 19 November 2012 - 11:50 AM

I know a handful of friends with chronic pain and fibromyalgia that have found NO solution to pain relief. I always tell them about how sick I was and that my life changed in a matter of days due to going gluten free. It still surprises me that they choose not to try a gluten free diet. It is a natural remedy to try involving no narcotic or brain numbing medicine. please convince your friend to try it. Good Luck :)
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#20 Framefunnyfarm

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Posted 19 November 2012 - 11:53 AM

Chiana,

I know he's aware of what is happening to him. I'm not sure if he's given up so much as maybe he just feels hopeless?

I'm hoping that by reading others' stories it will show him there is some hope, regardless of what doctors say.

I get very frustrated with the situation because gluten was destroying my life and I had to figure it out for myself. So many of my symptoms resolved (including neuro symptoms like migraines, difficulty with words, tingling hands, a reduction in my autistic isolation (I have aspergers)... and he know this and has seen this happen for me. I just can't fathom how becoming progressively more disabled is not something that would make you try anything you could to get better. Especially when its something that you can control yourself. Even if it isn't the answer to your problems.... how is it not worth it to try???? Slowly dying seems harder than changing your diet...

:-(

WOW! Ollie's Mom, that was beautifully put....."Slowly dying seems harder than changing your diet" LOVE IT!! Can I steal it?
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#21 Lady Eowyn

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Posted 20 November 2012 - 07:44 AM

Hi there
Just thought I would add ...
I believe my dad may suffer from gluten ataxia. It has come on significantly in about the last 6 years and he now has great difficulty walking and balancing. He goes from furniture to wall, etc so he has something to hold. Age 88.
He recently had a brain scan which showed bright patches - the consultant thought it might be 'normal pressure hydrocephalus' but dad refused further testing so not diagnosed. I have had him suggest celiac to his doc and consultant but he was told it couldn't be that as it is 'very rare' :o .
He also seems to lack feeling in his feet.

All his life he has had GI problems and is the most difficult person to feed (very finnicky and I mean VERY :ph34r: ) and always has been.
It goes without saying that I have suggested gluten free but he lives alone and he feels it is beyond him. (I would also point out that one word from me and he does as he pleases) so without a doc onside it's not going to happen.

I too get balance problems when glutened - so I know what to expect from the future if I don't take care.
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#22 Ollie's Mom

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Posted 20 November 2012 - 11:11 AM

WOW! Ollie's Mom, that was beautifully put....."Slowly dying seems harder than changing your diet" LOVE IT!! Can I steal it?


Be my guest!
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