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Gluten Ataxia?


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#1 Krystal K.

 
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Posted 23 February 2012 - 02:54 PM

Hey there,
I was diagnosed with a gluten intolerance called gluten ataxia this past november. I am still learning the rules and ya know changing my lifestyle around but I am curious does anyone here have this? Symptoms include: dizziness, unstable gait.. meaning trouble walking straight..things kind of "float" around you like you're in a dream world.
I am much better now. But I've noticed the 3 times I have been accidently glutenized I get this Rush of adrenaline and my heart goes crazy fast my knees get trembly weak and I tend to feel like I might faint but haven't. Also the next day I'm exhausted and very dizzy and stomach pain. Does anyone here have this? and if so do you think each time you get glutenized do symptoms stay longer ?..or can symptoms become permanent?
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#2 IrishHeart

 
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Posted 23 February 2012 - 03:08 PM

I had this myself and virtually all those symptoms have disappeared after I went gluten-free. It took me several months for those and the other neurological symptoms to improve/lessen.

They are pretty scary symptoms for sure.

There are several threads on here that discuss gluten ataxia. Lots of us have suffered these symptoms. Look under "related disorders" or use the SEARCH FORUM VIA GOOGLE at the top right corner under your profile and put in gluten ataxia.

Symptoms resolution times vary, but you need to be more careful so you can stop these glutenings. Honestly, 3 times in 3 months is not allowing your body to heal. You keep tweaking the autoimmune response and provoke the symptoms all over again.

Hopefully you can stop that from happening and start to see an improvement. :)
Best wishes!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#3 ravenwoodglass

 
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Posted 23 February 2012 - 03:28 PM

I had severe ataxia at diagnosis. It does take some time to heal but I could walk unaided by about 6 months. For a couple years after diagnosis I would be off balance for a couple weeks after a glutening. I have been gluten free now for almost 10 years and now recover much quicker and the ataxia isn't as severe on the rare occasions that I do get glutened.
Go with as much whole food as you can to reduce chances of CC and hopefully you will heal quickly.
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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#4 Krystal K.

 
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Posted 23 February 2012 - 04:10 PM

Thanks to responding
I can see how it can get to the point where you need to be aided. I was leaning up on walls mostly and gave up on using my bed up the stairs in my house. I am very happy that it is getting better. But like both of you said I still need to heal! I had a rougher start to it then I would've thought... and it was all CC that got me.(toaster,double dipped sugar bowl that had flour in it..ugh started out thinking it was easy!"no bread" bleh not quite) I'm determined to stick to whole foods.
Did you ever feel like the road was moving? Sounds wierd but I've noticed that when the car stops it still looks like its moving..dr. said it was part of the ataxia but now im curious it you may have experienced this?
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#5 eatmeat4good

 
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Posted 23 February 2012 - 04:24 PM

I had this too for many years actually. It was awfully scary. I couldn't explain it to the Dr. as well as you did, but yes, "things kind of float around you" or you feel as if you aren't real. I had heart palpitations and felt as if I would faint. I stumbled and sometimes fell down. I fell in the shower too. It scared the heck out of me. My legs were wobbly and I bumped into walls. When I was first gluten free because I found all my symptoms here, I was scared that the neurological symptom of gluten ataxia might be permanent. I had read that neurological symptoms do not always resolve even if you are gluten free for life. That really scared me. I had the heart palpitations and sweating and feeling faint and delirious episodes too. I just tried to believe it would get better and kept eating gluten free.

Do you know what? It all went away. I was quite seriously ill for several years and apparently it really was all gluten-related. I just wanted to re-assure you that it can completely go away. I have been gluten free for a year and 5 months and I would say the walking got better and the stumbling gait got better slowly every day. The dizziness and foggy delirious episodes slowly subsided and all of the ataxia symptoms were gone by 3 or 4 months. It was amazing to me.

At first when I would get glutened it would all come back really fast. Now that I'm a year in it really doesn't happen even if I get glutened. I get anxiety really fast and depression for a few days and maybe a migraine headache and the DH rash, but the gluten ataxia has never returned once I hit the 4 month mark. Well, maybe once when glutened, I sorta spaced out and bumped into a wall, but it was nothing like it used to be when I didn't know gluten was causing it. your symptoms can change over time as you are gluten free longer, but hopefully your ataxia issues will resolve. This has been my experience.
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#6 IrishHeart

 
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Posted 23 February 2012 - 04:28 PM

oh yes..

and I walked sideways and banged into walls (had so many bruises)

also, I had vertigo, blurry vision and
I was hallucinating at times (I never told any one that until another celiac and I discussed it recently-- because I did not want anyone to think I was nuts--- but once she said it, I said YUP, me too)

I felt like things were going in slow motion,
I misjudged curb depth,
I was so out of it, I had to stop driving for 3 years! I was lost in space.
I told hubs I felt like I was tripping my brains out :blink:

I had to hold onto hubs' arm when we went out and I told him I felt "peculiar" and dizzy.
Had bizarre dreams that seemed real and I woke up screaming frequently.

I told my sister I felt like I was sleep-walking through my own life. Like I was being poisoned somehow (well, I was!)
And we would drive somewhere and I had no idea how we got from point A to point B--time/space was all jammed together.

It was frightening as hell and I hope never to experience it again.

I call that time Gluten Head Hell.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#7 eatmeat4good

 
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Posted 23 February 2012 - 04:40 PM

I just saw your next post about the road moving...

Oh yes! I used to hate riding in a car because I felt like I was on a roller coaster. And sometimes I had to drive to the store so I would only let myself drive at night and very slowly to the nearest store to get food. It was like I was always about to fall off the edge of a cliff. I drove like I was drunk. It scared me-so I had to stop driving for the safety of myself and others.

Even just walking I would feel like the sidewalk was moving and I couldn't keep my balance. I used to hang onto my ex-husbands arm or my son's...not just like for support...but like gripping them with fear because I always felt like I was on a roller coaster. And if it was really bad, it felt like the roller coaster was going backwards. I used to say I was "carsick" from regular life things like walking across the street. Wow. You made me remember that my whole existence was one big glutening episode. I was so confused about what was wrong with me. I'm so glad to know about what was causing it. And I am happy for you that you know now too. I hope it gets better soon. Yes, the CC is whole learning episode isn't it? I didn't believe it at first. Oh my, how wrong I was. Now I know...and could write a book on ways to gluten yourself accidentally. :)

Before I got sick, I had a reputation for walking fast and always looking like I was in a hurry.
I'm happy to report that I'm back to that level of funcitoning again and it feels so good. I wouldn't have believed I would return to normal. My son is amazed. :) I am too!

I now call the sick years..."My 7 Year Glutening".

Thank god that's over!
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#8 Kamma

 
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Posted 23 February 2012 - 04:55 PM

Yes, yes, yes to all the symptoms you mentioned and most of the other ones that the other posters mentioned.
I was diagnosed tentatively in November and confirmed after the gluten challenge.

How long were you experiencing your symptoms before you were finally diagnosed? Mine started about three years ago with severe vertigo that was then accompanied by the falling over, instability, tilting when I walked, exhaustion, etcetera.

I have been gluten free for almost two months now and at the six weeks mark, my vertigo disappeared. The tilting over when I walk seems to still be there. But I have energy! Hah! (and I'm sleeping in my bed now - and not hanging onto walls).
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#9 Krystal K.

 
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Posted 23 February 2012 - 05:00 PM

omg it sounds so familiar Im not driving yet, no way But I hope to again and i can't believe how nice... although terribly unfortunate that you all had to go through this ...it is for me to hear some stories because a lot of people around here think..or make me feel like its "all in my head" or they think I can have a little bit and be ok.. I too had the heart palp. and blurry vision. Not to be dramatic but It makes me teary to see hope that I can have my life back someday. I had to close down my dance school because i just couldnt run it anymore. balance on one leg? I had to have income so I re-opened with an assistant who teaches for me but its just not the same. Its def. very scary but until tonight I never heard anyones stories about it. And it sounds like once I get my act together and stop having setbacks I'll be good.
Thanks again for sharing
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#10 ravenwoodglass

 
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Posted 24 February 2012 - 03:57 AM

It will get better. Something that helped me was seeing a physical therapist. It was a big help in regaining my balance. He had a machine that simulated a surfboard and it was a big day when I was able to stand on that without holding on to anything. You might find a PT helps the healing process along. Hopefully it won't be long until you are back to teaching those classes yourself.
  • 0
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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#11 IrishHeart

 
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Posted 24 February 2012 - 06:24 AM

omg it sounds so familiar Im not driving yet, no way But I hope to again and i can't believe how nice... although terribly unfortunate that you all had to go through this ...it is for me to hear some stories because a lot of people around here think..or make me feel like its "all in my head" or they think I can have a little bit and be ok.. I too had the heart palp. and blurry vision. Not to be dramatic but It makes me teary to see hope that I can have my life back someday. I had to close down my dance school because i just couldnt run it anymore. balance on one leg? I had to have income so I re-opened with an assistant who teaches for me but its just not the same. Its def. very scary but until tonight I never heard anyones stories about it. And it sounds like once I get my act together and stop having setbacks I'll be good.
Thanks again for sharing


It does get better! You do not sound dramatic at all---your relief is genuine. :) I did the SAME thing when I came on here last year and saw RAVENWOODGLASS and others posting this same information and reassuring me that my symptoms were gluten-related and I would be all right in time. No doctors could tell me that. I had brain MRIs, EMGs and saw 3 neuros. This was before I figured out I had celiac . 3 years in that misery wondering what the hell was going on.

It is "all in your head"--- but it is not imaginary. :)

I had to stop dancing, riding a bike, walking on a treadmill (I slipped off one at the gym ) and doing yoga, even Tai Chi. Driving was out. My legs were so uncoordinated and weak. Everything BURNED from nerve pain.
I was ON FIRE from head to toe. Life came to a complete stand still.

Part of my problem was that I also lost massive muscle mass, so my muscles are weak and they lost tone. Working with a PT and a LMT
who specializes in rehabbing muscles and the pelvic area and working out trigger point knots has helped a lot. It's been a year and now, I can walk for 20 minutes without heart palps, shortness of breath and dizziness. I stretch and move with less awkwardness and pain. I could not lift a soup can. Now, I use 2 lb. weights to strengthen. But it is slow progress.

At one point, I needed help dressing and could not walk the length of my driveway without needing to lay flat on the floor after so I could breathe and so the room would stop spinning.

If you are experiencing heart palps --it could be vitamin deficiencies. (B-12 and Folate anemias are common in celiac and I had both and they made me feel like a tired old lady :( )

I hope your doctor has run follow up testing for you?

You may wish to read some articles on what celiac has done to your body. It takes the "fright" out of it! ;) This Gluten File is a vast warehouse of Published medical articles. Search the site for all the articles, but here is the Gluten Ataxia Page.

http://sites.google....ee/glutenataxia

You are probably a lot younger than I am, so you may well rebound a LOT faster! :)

Best wishes to you!
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#12 Bubba's Mom

 
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Posted 24 February 2012 - 06:57 AM

I started getting these same issues around the time I was DXed. It's scary..and very hard to describe to someone. They cleared up in a couple of weeks, once gluten-free.

I had a real bad episode Jan. 17. I got real wobbly and weak, and staggered when I walked. My heart threw a couple of weird beats (PVCs) which triggered chest pains. I ended up going to the hospital. They kept me overnight and monitored me, but then sent me home. I'm still experiencing this off-balance thing and if I go shopping can only go for a short time and must have a cart to hold onto to steady myself. I have driven to the bank and for very short errands, but I don't think I should be driving?

I keep thinking back to that day and wonder what might have triggered it? I had eaten Boar's Head sliced beef for lunch. I'm thinking it might have been CCed in the deli? It's now more than a month later and I'm still feeling the effects, although not as severe.

My gene test says I'm DQ1-(2.2). I've read that those of us with these genes tend to get more neurological symptoms?

It's encouraging to see this improves with time.
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#13 researchmomma

 
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Posted 24 February 2012 - 09:30 AM

My daughter gets seizures (occipital based with an aura) from gluten. She stumped her neurologist for years because her EEGs are normal between seizures (they only occurred 1-2X per year). But she also had terrible balance, dizziness, and brain fog. Then there were her other symptoms like her mood, stomach issues, constipation, failure to thrive, etc.

Anyway, she is also double DQ1 (5,5). I find that interesting. We see our neuro in March or April and we can't wait to get her off her meds for seizures. She doesn't need them.

All her brain fog, dizziness and tiredness has vanished after 9 weeks of being gluten free. She seriously is a different kid.

Hang in there and keep us posted on how things are going.
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#14 Krystal K.

 
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Posted 24 February 2012 - 09:47 AM

Yes, yes, yes to all the symptoms you mentioned and most of the other ones that the other posters mentioned.
I was diagnosed tentatively in November and confirmed after the gluten challenge.

How long were you experiencing your symptoms before you were finally diagnosed? Mine started about three years ago with severe vertigo that was then accompanied by the falling over, instability, tilting when I walked, exhaustion, etcetera.

I have been gluten free for almost two months now and at the six weeks mark, my vertigo disappeared. The tilting over when I walk seems to still be there. But I have energy! Hah! (and I'm sleeping in my bed now - and not hanging onto walls).


I really started having these episodes about 1 year ago. It started for me with rushes of adrenaline and then clamminess. I really thought I was having anxiety or something ..and I ignored it. Then after eating at red lobster my "anxiety" went from tolerable to intolerable. I went to the drs thinking they were either going to say I developed and allergy to shrimp or that I had a full panic attack. She said panic attack. So I said no to the meds and tried to embrace life and drink tea and do yoga lol. Well it didn't stop happening everyday and then I started having trouble swallowing my foods. Not like it was closed up but more like I couldn't tell myself to gulp. Def. scary back to dr.s They wanted to see if there was blockage in my throat..and there wasn't.Then is happened really bad at dance I rushed over to the walk in health center.. they literally gave me a piece of candy thinking my sugar levels dropped and sent me home. well in the end it got worse and worse as you all know and went from specialist to specialist and out of desperation I went to my husbands chiropractor and he suggested that it might be a food allergy or intolerance. My neuro. actually said one time in her office.."hmm I wonder if its celiac" and I had no clue what that was ..but she never ran any tests for it! Just thought it out loud! 8 months into it lab work showed intolerance to gluten and my ana test was also extremely high ...so I stopped eating gluten and it has helped they are running follow up tests I had some bloodwork earlier this month. All I care is that its getting better. Mri's are no fun for someone who hates small spaces :( I currently still see the chiropractor and he has me on some vitmans and minerals and a probiotic.
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#15 sharonanne

 
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Posted 16 August 2013 - 11:53 AM

Hello,

 

I am new and this is my first post. I am definitely Gluten Sensitive.

 

May I give you a little back history: I have Rheumatoid Arthritis. Six years ago I started having terrible stroke-like symptoms, which paralyzed my left side.for 4 hours and sent me to the hospital for tests that all said I was fine. Except that I has a weird gait for months later, and slurred speech. My neurologist said I may need to seek a psychiatrist. Thanks, but no thanks. I knew it wasn't a psychological manifestation. Sure I was stressed, who wouldn't be, I was also in unexplained horrible neurological pain. He didn't know what to do with me. All my tests were normal. His OFFICE made an appointment with a 2nd neurologist for a 2nd opinion. When I arrived at that appointment (which was a considerable distance) the appointment desk refused to let me see the doctor, saying he NEVER takes "2nd Opinions AT ever, and turned me away. I was totally devastated, I was ill and had come so far on my own.

 

I have gone on and on like this for 6 years, living on crutches, in and out of a wheelchair, out of work, but on social security thank heavens.

 

Here's the irony of it all, being the best bread baker ever was always my goal. I loved bread more than money. I made bread twice a week. I had a bread blog. I taught how to make bread classes ONLINE, for heavens sakes. See how in trenched I was into gluten? It was my Entire LIFE! 

 

Then my nurse friend, whose son has Celiac says to me, "Sharon, my dear, You are definitely Gluten Intolerant! Your bread making is causing your immune system to attack your nervous system and this is causing your troubles." 

 

I responded back, "No, I've been tested for Celiac. Both a blood test and a gastro-intestinal test were negative." 

 

Like I said I continued for 6 years being disabled, no help from any neurologists.

 

Six years later, the same nurse friend reminded me,  "Sharon, my dear, You are definitely Gluten Intolerant! Your bread making is causing your immune system to attack your nervous system and this is causing your troubles." 

 

I became so disabled that I had to finally LISTEN to her, I stopped eating grains over a year ago. I've now have been FULLY Gluten-free for 9 months. You could not pay me enough to go back to my old lifestyle.

 

I went from a size 14 down to a size 4 (loosing 40 lbs in a year) I am only able to eat whole foods: meat, fresh fruit and vegetables. No packaged food - due to food allergies. I don't tolerate many of the gluten-free products due to food allergies. However, I am now STONGER, and FEEL BETTER than I have in perhaps 25 years now!!!

 

That's the good news! Plus I no longer have the muscle PAIN that they attributed to Fibromyalgia, which my Rheumatologist affectionately calls the "F" word. (sorry if that offends anyone else) but that's NOW GONE, having gone totally gluten free.

 

The bad news? The peripheral nerve damage REMAINS, as long as you don't touch me, I'm okay. When you do, then I'm not. Then there's the drop foot and weird gait that comes and goes. Slurred speech, the whole nine yards!

 

It's all classic: when I came upon Symptoms for Gluten Ataxia, I sat there and cried buckets!!! What the heck - 3 or 4 neurologists and none of them suspected "Gluten" was 

 


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