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A Request For Those Who Suffer From Gluten Ataxia


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#1 Ollie's Mom

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Posted 16 November 2012 - 12:08 AM

Hi there,

I have a request for those of you who have suffered from gluten ataxia.

I have a friend who has (according to doctors) "idiopathic ataxia", but I suspect it may be gluten related. But of course they don't think so, because his blood tests were all normal (I don't know what celiac specific tests were done, only that he was "tested" and found to be fine). Same with brain scans - everything looks fine. So fine he can barely walk with a walker and sounds like he's drunk when he tries to talk. The way things are progressing, it does not look promising. At all. He's in his 50s, and onset of symptoms was approximately 5 years ago.

I had suggested he try a gluten-free diet to see if it would stop progression and /or help to reverse some symptoms (the dream scenario). He has not. He's said on occasion that he has tried doing a"mostly gluten-free diet", but as we all know it's all or nothing. And to be honest, I'm not sure I believe he's even tried that.

So now on to my request: for those of you who have seen relief from ataxia by going gluten-free, could you relay your stories to me so I can send them on to him? Either on this thread or via PM? If you pm me, I can give you my email addy.

TIA
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#2 ravenwoodglass

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Posted 16 November 2012 - 05:18 AM

I have gluten ataxia although it has for the most part resolved since I have been gluten free. Before I was finally diagnosed I had gotten to the point where I needed canes to stay upright unless I could stay next to a wall. I also had severe memory and speech problems that went with it. I didn't slur my words but I could never get them out of my mouth. I couldn't tell you what a fork was if you held it up in front of me. They thought for a while I had MS but a spinal tap didn't reveal what it needed to reveal for that diagnosis.
I had been told I would be in a wheelchair in a few months six months before I was finally diagnosed. My right side was the most severely impacted as was shown by electromylograms. Stairs gave me a great deal of difficulty and I would need to use my arms to help pull myself up the stairs. An MRI revealed the Unidentified Bright Objects that are diagnostic of celiac that has attacked the brain. My neuro was however clueless about what UBO'S were.
My recovery was gradual but steady. First I was able to give up the canes and six months after diagnosis I caught myself running up my stairs. I sat at the top and sobbed. Some residual balance issues remained for quite a while but with the aid of a PT I was able to overcome them. I still have some damage to my right side, I have a crooked smile and my right hand doesn't move as fast as my left so typing requires a lot of backspacing at times but I can live a normal life now. I did have to be very strict with the diet. Even the smallest amount of gluten will impact my balance even now 10 years into the diet but I will never go back to being as disabled as I was.
I hope you can convince your friend you give the diet a good strict go for at least 6 months. It could give him his life back. Don't let him think his age and the length of time he has been impacted means it is hopeless. My ataxia had been progressing since childhood and I wasn't diagnosed till I was 46. If I could recover hopefully he will also.
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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)

#3 Adalaide

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Posted 16 November 2012 - 06:22 AM

My ataxia wasn't terribly bad before being diagnosed, but I can see now where I was headed. I was still at a place where mostly I was clumsy and off balance, but it was getting progressively worse. I could be standing perfectly still and suddenly falling over sideways for no reason. I would constantly bump into things. I dropped things and fumbled with my hands. I had other neurological issues, like raven, the memory and speech. I would start a conversation and stop mid-sentence forgetting what I was doing, even I was in the room with the person I was talking to. I would stumble over my words and slur like a drunk. I also had an physical complication that added to this, progressive muscle weakness. For whatever reason, maybe because of my lack of coordination and inability to do anything I just kept feeling weaker and weaker. I couldn't open a bottle of soda or a jar. Some days because I didn't have the strength, some days because I couldn't make my hands twist it right.

I have been gluten free for 11 1/2 months. All of these symptoms have completely resolved. I am even gaining my muscle strength back. On the rare occasion that there is a slip up and I am contaminated with gluten, all of these symptoms return full force. There is absolutely no doubt it is all gluten related.
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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#4 Ollie's Mom

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Posted 16 November 2012 - 06:30 AM

Raven and Adelaide, thank you for your replies. I will be passing them along to my friend. Before I do, could you let me know how you were ultimately diagnosed? Blood test, biopsy, elimination diet?

Thanks again.
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#5 ravenwoodglass

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Posted 16 November 2012 - 07:03 AM

I was diagnosed by an allergist through an elimination diet that was very strict and started out with just 5 foods. This was after years of being told my ceiac panel was negative. The diagnosis was confirmed when I was then referred to a GI who almost killed me when he demanded a second challenge before the endo.
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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)

#6 Celiac Mindwarp

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Posted 16 November 2012 - 08:31 AM

That gluten challenge is just barbaric. I did 3 weeks and took 4 months to get over it. Oh, and they lost my blood test at the lab :(.
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#7 Takala

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Posted 16 November 2012 - 08:48 AM

I was several years into having it and being told it was probably an MS flare, (but previous MS testing was negative, also) and went thru several doctors and insurance plans before the neurologist from hell™ finally condescended to do a brain scan, and lo and behold, I had brain lesions- but not the MS kind. I got the test reports from her office after she canceled the appointment on me with no warning, (I find this out when I show up) then I made them reschedule it, and when I finally got in, she actually sat there in the exam room flipping through the file with this exaggerated sort of disdain and told me that there was no reason for any of my symptoms (WTF ?! :blink: ) and that my new grain free diet was certainly not going to help. It remains one of the most surreal experiences of my life and oh, how I wish I had had a wire on or a hidden camera to record this performance in malpractice.

Yes, I am one of those dreadful people who have no official diagnosis because I apparently cannot throw a positive blood test and it had to get where the inside of my head is like a Swiss Cheese before I got the primary care physician to believe it, but at least he acknowledges that this patient does not eat gluten. Even if I got the idea for going off of grains from the internet from some MS blog which I have long lost the bookmark from. There is also an arthritis blog which has a small contingent of people on an SCD diet with good results, but the non - diet people on that blog are simply unbearable and want to bicker about it all the time, because they tried it and it doesn't work, and they want to take medications. The SCD peeps also you have to avoid grains permanently. Whatever.

I have worked like a dog exercising and exercising and did I say, exercising, and physical therapy, and have mostly recovered and can pass for normal most of the time, other than sometimes my eyes still won't track together when I'm fatigued and I have to be a bit careful going down steep inclines or steps. A few years ago the feeling even came back into my feet, which was a mixed blessing, as now they hurt when I do a lot of walking, but I can now drive a stick shift again, and we got an older, gently used manual transmission 4x4 car so I can do this (my spouse thinks this is sort of nuts, but he humors me on it) instead of driving the automatic because I have to. I also can type a lot faster, mostly touch typing, and string together sentences into paragraphs that make sense. ;) Most of the time. I have been very, very lucky to have really good spousal support and have been blessed with two horses who have tried to stay underneath me, which I have been told is unusual. My older horse that we have now has done this from the first time he was ever ridden.

I have met one other gluten intolerant, neuro - person in real life, and we get diagnosed with all sorts of bizzarro land :ph34r: wrong things and told we are basically kookoo making it up :wacko: or we get the Doomsday Faux Diagnosis where it is implied that we should get ready for the wheelchair as nothing can be done. From what I have researched on the internet, we tend to be very sensitive to cross contamination so we have to be extra careful with what we eat. I know that sometimes I do react to regular commercial types of foods which are inherently gluten free, so I am a bit pickier with what I expose myself to than a regular celiac, as I don't want a migraine, my eyes crossing, and dizzyness just from eating or drinking something casually.

I am pretty sure I am third generation gluten intolerant/celiac, based on the symptoms my relatives had, (but they were not diagnosed either) but I have not done the genetic testing because I don't need to prove to myself that I have a "gluten problem," I know I do, and I don't have children. My ethnic background is perfect for this, I don't know why somebody could not have suggested this sooner, except I wasn't thin and not having overt gut symptoms.
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#8 bartfull

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Posted 16 November 2012 - 08:49 AM

Ollie's Mom, I have not had to deal with gluten ataxia myself, but I have a friend who sounds exactly like your friend. He walks with a spastic gait, slurs his speech, has trouble controlling his hands when he tries to pick something up, and has lost his strength.

He has been tested for MS and a variety of neurological diseases, and his doctors have never been able to figure it out. He too has those UBO's that Raven mentioned. When I told him about gluten ataxia, I BEGGED him to mention it to his doctors and get tested. He said going gluten-free would be too hard! He never brought it up to his doctors at all.

He has progressively gotten worse over the past three years. He has had to give up his home and move in with his children who feel that he can't be left alone for even a minute, lest he fall and hit his head or something. The poor man is only 60, and he has no life! All because he thinks going gluten-free would be too hard!
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#9 bartfull

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Posted 16 November 2012 - 08:53 AM

Oh yeah, the vision thing. I forgot to mention that my friend's FIRST symptom was visual. He said it seemed like his eyebells were quivering in his head and everything he looked at looked "jumpy". That came and went at first. Now it is constant, to the point he can't even read.
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#10 Takala

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Posted 16 November 2012 - 08:54 AM

Oh, and I told current doc hell would freeze over before I would ever touch gluten again, and at that time I had been off of it about 5 years. Don't even think to mention "gluten challenge" to me. :angry: Or I will go get my old cane out of the car and start thwacking an insurance rep with it.
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#11 JNBunnie1

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Posted 16 November 2012 - 09:38 AM

I definitely had gluten ataxia, however mine was very short-lived.

I 'got sick' when I was 19, with various symptoms, chief amongst
them being unrelenting horrendous nausea, cyclical fevers, stunning
headaches-not migraines, and regular passing out, which is scary in
the shower :ph34r: and don't forget the gastro symptoms. I was also ataxic,
walking into walls, dropping things without meaning too, knocked over a
few coworkers... And aphasic, with difficulty thinking of words/synonyms,
and losing myself in the middle of thoughts, things like that. I would
regularly switch letters inside of words too, it was like reverse dyslexia
kind of. Made for some interesting conversations when I was still
working at the hotel. :blink: I also developed peripheral neuropathy in my
hands and feet, I wouldn't know I'd hurt myself until I saw blood on some
thing.

All of the mental ataxic/aphasic symptoms improved dramatically right away,
and resolved completely within 6 months of going gluten free. It took over a
year for the neuropathy to resolve. The stomach symptoms, passing out,
fevers, headaches, went away almost overnight.

I was only sick for 6 months, and by the end of it I was down to 105 lbs (5'8"),
had the lowest blood cholesterol my doctor had ever seen, and unable to work.
I do not understand how anyone continues to function under circumstances
like that, and I feel sooooo lucky to have figured it out so quickly. I was apparently
tested for Celiac via endoscopy, and never told that's what they were doing. They
took like two samples, it came back negative. I read in a book one night that some
people couldn't tolerate wheat, so I figured I'd give it a shot, and the rest is history.
Since going gluten free, I have been glutened a few times, and whenever it
happens I get the DH rash, so I know it's straight Celiac I have, although I'll
NEVER be willing to do whatever they want for the testing. In fact, all this was 8
years ago, and my GP at the time (who is marvelous) told me "Good. Never
eat gluten again. I don't care if you have a diagnosis." Love him.... :wub:
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If you're going through hell, keep going. ~Winston Churchill

#12 Adalaide

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Posted 16 November 2012 - 10:01 AM

My diagnosis was completely an accident. I had symptoms my whole life and got pretty much housebound sick within a year of getting married, which was close to 5 years ago now. Then a year ago in the fall I woke in the middle of the night with gallbladder issues and ended up in the ER. They told me I needed it out, my insurance said it was an elective surgery and wouldn't pay for it so I found myself in and out of the ER until the week before Christmas. Then I was in the ER three times in a few days, eventually my liver tests were through the roof and I had emergency surgery. I will be retested next month or in January to find out if I have permanent liver damage because I still get pain. I had had a stone stuck that couldn't be removed during the gallbladder surgery and had to have an ERCP the following day, during that procedure the GI doctor was so alarmed by the state of my intestines he did a biopsy. A week later I got the results. I can't imagine how much sicker I would have to have gotten before my diagnosis if my gallbladder hadn't betrayed me and my insurance screwed me over. Sometimes "bad" things turn out to be good I guess. I also suffered symptoms from the time I was an infant, my diagnosis was the week before my 34th birthday. While not all symptoms are resolved, I feel like a new person. I have the hope I need to push through and use the new lease I have on my life.
  • 0

"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#13 Pegleg84

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Posted 16 November 2012 - 10:16 AM

I (I think) don't have ataxia either, but hearing these experiences is very insightful. It's clear that your friend should seriously try the GFD. It's so sad that people refuse to try it because they think it's "too hard". Having all control of your body and your life slip away is hard!

Ataxia is one of those things I've always wondered about but never really understood. I get lightheaded/dizzy at times, can definitely have those brain-fart, what the hell am I doing moments, and will sometimes be POSITIVE I wrote or read something, only to look back a few seconds later and see I did it wrong. I don't think that amounts to anything, but a bit of mild ataxia might be part of it.

JNBunnie, it's interesting what you said about switching letters. My mom, who was diagnosed about 5 years ago, always said she had "spoonerism" - not serious dyslexia, but just mixing up certain letters. I should ask her if that's gotten better since going gluten free. She also had some bouts of vertigo when she was in her 20's that were never fully explained, so, who knows...

Anyway, definitely interesting, and very glad going gluten-free has helped everyone out!
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~ Be a light unto yourself. ~ - The Buddha

- Gluten-free since March 2009 (not officially diagnosed, but most likely Celiac). Symptoms have greatly improved or disappeared since.
- Soy intolerant. Dairy free (likely casein intolerant). Problems with eggs, quinoa, brown rice

- mild gastritis seen on endoscopy Oct 2012. Not sure if healed or not.
- Family members with Celiac: Mother, sister, aunt on mother's side, aunt and uncle on father's side, more being diagnosed every year.


#14 Chiana

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Posted 16 November 2012 - 10:28 AM

If I consume a large amount of gluten, I feel as if I have been drinking, with everything that goes along with that. I can't focus on things (and certainly not more than one thing at once), my balance is horrible, and it feels like I am disconnected from the world.

The most difficult part is that he could be suffering from enough cognitive impairment that he may not completely realize what is going on, or he may be so screwed up that he no longer cares. Do you think he's given up?
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#15 Ollie's Mom

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Posted 16 November 2012 - 11:31 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...

:-(
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