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Gluten Ataxia?


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#1 meeegun

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Posted 10 May 2011 - 12:23 PM

hi,

i am new to this forum and new to gluten-free diets, celiac disease, and etc. last week, my chiropracter (who has a specialty in chiropractic neurology) dropped a bombshell on me when he casually mentioned that he thought i could have gluten ataxia. he suggested some bloodwork that was not covered by insurance and costs $125 for the panel. he is basing this on the fact that after 9 solid weeks of chiropractic and physical therapy i still cannot balance during the romberg test. he typically gives me the tandem romberg along with other neuro screenings. i don't think i have ever passed. along with this, i have double vision. this is a known problem for me that was confirmed at my eye doc's office a few years ago through testing. i have prism in my glasses to correct this. recently, i was referred to vision therapy to correct the double vision so that i can someday get lasik for my astigmatism and be able to see. i never told him about the double vision but he was able to pick up on the fact that my left eye does not converge and accomodate as it should (which is what causes the double vision).

everything i have read on gluten ataxia makes it seem like a pretty grave diagnosis. most of the articles were written about people who were unable to walk and had difficulty with every day tasks. with the exception of being clumsy and not passing the romberg, i would say that i am pretty much functioning normally. could he be wrong? does a positive romberg always indicate cerebellar/vestibular dysfunction (i have obviously not been drinking before any of the exams)? i was thinking of getting the bloodwork done and starting a gluten free diet in the meantime. is there anyone else in here that is going through something similar? are there others on the board who have gluten ataxia and are functioning quite normally as well? is it always as debilitating as the articles i was reading made it sound?

if you have any advice or personal experience in dealing with gluten ataxia i would love to hear about it.


thanks

meagan
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#2 a1956chill

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Posted 10 May 2011 - 02:23 PM

hi,

i am new to this forum and new to gluten-free diets, celiac disease, and etc. last week, my chiropracter (who has a specialty in chiropractic neurology) dropped a bombshell on me when he casually mentioned that he thought i could have gluten ataxia. he suggested some bloodwork that was not covered by insurance and costs $125 for the panel. he is basing this on the fact that after 9 solid weeks of chiropractic and physical therapy i still cannot balance during the romberg test. he typically gives me the tandem romberg along with other neuro screenings. i don't think i have ever passed. along with this, i have double vision. this is a known problem for me that was confirmed at my eye doc's office a few years ago through testing. i have prism in my glasses to correct this. recently, i was referred to vision therapy to correct the double vision so that i can someday get lasik for my astigmatism and be able to see. i never told him about the double vision but he was able to pick up on the fact that my left eye does not converge and accomodate as it should (which is what causes the double vision).

everything i have read on gluten ataxia makes it seem like a pretty grave diagnosis. most of the articles were written about people who were unable to walk and had difficulty with every day tasks. with the exception of being clumsy and not passing the romberg, i would say that i am pretty much functioning normally. could he be wrong? does a positive romberg always indicate cerebellar/vestibular dysfunction (i have obviously not been drinking before any of the exams)? i was thinking of getting the bloodwork done and starting a gluten free diet in the meantime. is there anyone else in here that is going through something similar? are there others on the board who have gluten ataxia and are functioning quite normally as well? is it always as debilitating as the articles i was reading made it sound?

if you have any advice or personal experience in dealing with gluten ataxia i would love to hear about it.


thanks

meagan

If you are planing on being tested for celiac's (blood test or endoscopy) wait to go gluten free until all your testing is completed.
There are some of us in these forums that have had/have issues with ataxia that have had good results with going gluten free .
Have you seen a neurologist or had any other testing done??
  • 2

Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#3 ravenwoodglass

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Posted 10 May 2011 - 02:30 PM

Congrats on having a good doctor. Gluten ataxia is progressive. What you are reading about are people like myself who have had it progress to the point where you can't walk unaided. Even then once someone is gluten free it can resolve. I was first effected by ataxia in childhood and even lost reflexes in my legs but the doctors would just shrug and didn't know what was causing it. I regained reflexes about 2 years into the diet.
Don't go gluten free until after you are done with celiac testing and then no matter what the results go strictly gluten free for at least 6 months or so. You may see some improvement before then but it takes time for nerves to heal. By the time I was diagnosed I needed canes or walls to walk but by six months I could walk unaided. For the first couple years gluten free even a tiny amount of gluten would cause the ataxia symptoms to come back. I rarely get glutened now but when I do the off balance feeling is very mild.
Gluten ataxia can also be found many times with a brain MRI. There are often bright spots that are visible on the films but not all neurologists know what those are.
Something you may find helpful after you go gluten free is a good physical therapist. Mine was very helpful at relieving the last remnants of the ataxic effects a couple years after I had been diagnosed.
  • 2
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 Takala

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Posted 11 May 2011 - 02:59 PM

Oh, geez, your chiropractor might be a genius for this if he has caught it !

Re: ataxia, you do not want to wait and have this get worse, if you can stop it and actually get better.

Run, do not walk, run and get those blood tests if they are for standard celiac panels. Stay on gluten while you are getting tested.

wikipedia on Romberg's Test http://en.wikipedia.org/wiki/Romberg's_test

Because I also have bone spurs in my neck and some stenosis (narrowing of the spinal canal where things run thru it) and I have had to do PT for decades just to "pass" as normal, when I started having much worse balance problems and bouts of dizzyness in the late 1990's they of course tried to pass this lack of balance off by just blaming my C- spine. Except that I was also now dragging one leg, tripping on uneven surfaces, and losing the feeling in my feet/calves, in addition to my hands. But I looked normal.

Vision problems go along with this, it's nutritionally related. http://www.herbalist...gory/8/start/0/

Not only do I have one eye that does not want to track naturally with the other one ( I wear glasses ) during my adult life I slowly lost some of the color vision in it - I was seeing different shades of color out of each eye, more reds on one side and more blue/greens on the other. EVERY doctor I told this to could not explain it. I was also nearly night blind. After years on a gluten free diet, not only to my shock am I seeing more color out of my bad eye, and am less cross eyed, I can see at night. There is all of this STUFF out there at night, we will be driving somewhere on moonlit evenings and I can see things that were never there before, or I've gone outside at night, and been amazed at what can be seen.

google search "gluten neuropathy ataxia" and you will get lots of articles like this

http://www.ncbi.nlm....pubmed/17175889

if you can read science papers here is the whole pdf download of "Neuropathy associated with gluten sensitivity, Journal of Neurology Neurosurgy & Psychiatry 2006 M Hadjivassiliou, R A Gru ̈newald, R H Kandler, A K Chattopadhyay, J A Jarratt, D S Sanders, B Sharrack, S B Wharton, G A B Davies-Jones http://drmarkrussell...sensitivity.pdf

This 2008 pdf download from ataxia.org looks like it was made from somebody's slide show power point for a lecture, but it has some nice clear bullet points http://www.ataxia.org/pdf/Gluten%20Ataxia.pdf

Anytime you see the names above like Hadjivassiliou, or Dr Peter H. Green or Dr Alessio Fasano, that is the good stuff for information.
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#5 Kim69

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Posted 12 May 2011 - 03:02 AM

Thanks for the links takala!
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May 2010 Diagnosed coeliac via biopsy - on gluten-free diet, now not anaemic
March 2010 Still Anaemic and very fatigued, abdominal pain still (Drs had thought it was related to abdom operation)
May 2009 Anaemic - had abdominal surgery; hysterectomy to remove large fibroid
March 2009 Vestibular neuritus (not sure if related but who knows!)
November 2008 Depression (still on meds - working well)

#6 meeegun

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Posted 13 May 2011 - 12:30 PM

thanks everyone for your replies. the chiro has offered me a blood test that i will ask him about today. i forget the name of the panel but it is apparently 95% accurate in picking up a gluten sensitivity. i can ask my doc for celiac panels too and see if he will go for them. i have never had any real digestive complaints. in fact, i always joke that i have the stomach of steel because it is seriously impervious to everything. but i know that in this regard i can still have it yet be asymptomatic. thanks for all of your info. this is scary stuff for sure that has probably gone unnoticed because i have back problems and a family history of astigmatism. i *thought* about going gluten free but i have yet to implement it! so i'm still able to get the panels. i appreciate your quick and caring responses.


Meagan
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#7 ravenwoodglass

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Posted 13 May 2011 - 01:32 PM

thanks everyone for your replies. the chiro has offered me a blood test that i will ask him about today. i forget the name of the panel but it is apparently 95% accurate in picking up a gluten sensitivity. i can ask my doc for celiac panels too and see if he will go for them. i have never had any real digestive complaints. in fact, i always joke that i have the stomach of steel because it is seriously impervious to everything. but i know that in this regard i can still have it yet be asymptomatic. thanks for all of your info. this is scary stuff for sure that has probably gone unnoticed because i have back problems and a family history of astigmatism. i *thought* about going gluten free but i have yet to implement it! so i'm still able to get the panels. i appreciate your quick and caring responses.


Meagan


Do give the diet a good strict try even if those panels have a negative result. People with mostly neuro symptoms instead of gut problems have an even higher rate of false negatives from what I have seen.
  • 1
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)

#8 eatmeat4good

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Posted 13 May 2011 - 10:01 PM

Hey, I just wanted to chime in that gluten ataxia can be reversed in some people. My little sister has had it all her life and she is now in her 40's. She is improving, but neurological symptoms can take a long time to heal. She has only been gluten free a few months.

And my son has had gluten ataxia since age 7- ironically since he ate his first pizza. He never cared for it before but the ataxia developed as soon as he started liking and eating it on a regular basis. Fast forward to age 16 when mom found out about gluten ataxia by googling and landing at Celiac.com...and this child who has had asthma and gluten ataxia for years has made a remarkable recovery. No more asthma meds and no more ataxia and a much more pleasant personality. He has only been gluten free for 6 months and he now runs, is not uncoordinated, and he is much more mentally alert.

I developed gluten ataxia too after several years of being told what I had was irritable bowel symdrome and fibromyalgia. No one ever picked up on it. I saw 25 Dr.'s and told them all about uncoordination, falls, bruises etc. I agree with Takala...your chiro is one GENIUS if he figured this out for you early on. It gets worse if not treated and yet you should have good hope because if it is treated early the possibility is there for complete recovery. My son walks normally and he is not showing any signs of other neurological problems.

Just wanted you to know.

Also, some people report dramatic improvement in vision after several months of being gluten free.

It will be well worth your money and your time to follow up on this. Give your chiro a high five from Celiac.com for us. We love it when they get it right. Course we don't know yet....but the signs are there and he picked up on it...that is sooooooo cool to hear about!!!!!!!!!!!!!
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Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#9 RollingAlong

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Posted 14 May 2011 - 10:26 AM

http://www.cyrexlabs...36/Default.aspx this lab has a wide array of gluten sensitivity tests.

Aristo Vojdani is part of this company. He has some research on ataxia also Dr. Hadjivassiliou, a neurologist in the UK.
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#10 meeegun

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Posted 22 November 2011 - 01:01 PM

just wanted to give an update to this thread. in the months since i posted i had a work injury that lead to MRI's that discovered...multiple sclerosis. so my chiro was definitely on to something. it wasn't gluten ataxia, BUT it is an autoimmune disease that has been linked to gluten. i was shocked beyond belief to be diagnosed with MS. months later, i still am! i never saw it coming. never felt "sick enough" to worry. sigh. anyhow, if you have a gluten sensitivity and are having some balance problems or other mild neuro signs, it might be wise to check into MS as a possible diagnosis. early dx allows for diet modifications and medications which will limit (hopefully) the progression. if you are interested in knowing morecheck out this informational page i am now on a gluten and diary free diet. so far so good...
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#11 ravenwoodglass

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Posted 22 November 2011 - 02:26 PM

just wanted to give an update to this thread. in the months since i posted i had a work injury that lead to MRI's that discovered...multiple sclerosis. so my chiro was definitely on to something. it wasn't gluten ataxia, BUT it is an autoimmune disease that has been linked to gluten. i was shocked beyond belief to be diagnosed with MS. months later, i still am! i never saw it coming. never felt "sick enough" to worry. sigh. anyhow, if you have a gluten sensitivity and are having some balance problems or other mild neuro signs, it might be wise to check into MS as a possible diagnosis. early dx allows for diet modifications and medications which will limit (hopefully) the progression. if you are interested in knowing morecheck out this informational page i am now on a gluten and diary free diet. so far so good...


Did they also do a spinal tap to confirm the MS? Gluten ataxia causes brain lesions like the ones you get with MS but the spinal fluid won't show the 'debris' that MS does. They thought I had MS until I had the spinal done.
I hope you continue to do well.
  • 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)

#12 anabananakins

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Posted 22 November 2011 - 07:01 PM

just wanted to give an update to this thread. in the months since i posted i had a work injury that lead to MRI's that discovered...multiple sclerosis. so my chiro was definitely on to something. it wasn't gluten ataxia, BUT it is an autoimmune disease that has been linked to gluten. i was shocked beyond belief to be diagnosed with MS. months later, i still am! i never saw it coming. never felt "sick enough" to worry. sigh. anyhow, if you have a gluten sensitivity and are having some balance problems or other mild neuro signs, it might be wise to check into MS as a possible diagnosis. early dx allows for diet modifications and medications which will limit (hopefully) the progression. if you are interested in knowing morecheck out this informational page i am now on a gluten and diary free diet. so far so good...


I missed your original post at the time but I think it's awesome your chiro suggested celiac. Because I too always failed the romberg test and my chiro didn't indicate that it was a problem, there were just exercises he wanted me to do. It was about 3 years later that I ended up going gluten free (and in those 3 years I gleefully showed people how I'd always fail that test, I thought it was kind of cute, sigh) and when I was researching celiac I read about gluten ataxia and I was horrified. I'm heaps better and I no longer fail the romberg test (nor do I walk into walls or have brain fog!)

I'm sorry it turned out to be MS. I hope you're doing well.
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#13 Kamma

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Posted 22 November 2011 - 07:41 PM

Hello Meegan,

My brother was diagnosed wiith MS when he was thirty five. He has the steady decline progession one. Within the first year he had changed his diet to mostly to a raw food diet but kept cooked chicken in for the protein. After almost fifteen years, he's still able to walk albeit it's very difficult for him at times. I acutally think its strength of will holding him and his determination to not use a cane or walker.

Im in the process of eating gluten for the next eight weeks to be tested for celiac. I have the vertigo, balance problems, and seizure like episodes. I'm on day 12 and I feel like crap but I want a sure confirmation on whether its all due to celiace (I was tested for MS and it came back negative). I've urged my brother to taken gluten out of his diet to see if that also helps with his MS symptoms. He's only been doing it for a couple of days and hasnt seen a difference yet but perhaps it's too early yet.

I'm sorry to hear you are diagnosed with MS. Its always a shock when something like that comes down the pipe. Please take very good care of yourself and keep us posted on how you are making out. A big hug to you.

Kamma
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#14 frieze

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Posted 23 November 2011 - 07:27 AM

Did they also do a spinal tap to confirm the MS? Gluten ataxia causes brain lesions like the ones you get with MS but the spinal fluid won't show the 'debris' that MS does. They thought I had MS until I had the spinal done.
I hope you continue to do well.

This is really very important to look into!!!!
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#15 Skylark

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Posted 23 November 2011 - 12:18 PM

just wanted to give an update to this thread. in the months since i posted i had a work injury that lead to MRI's that discovered...multiple sclerosis. so my chiro was definitely on to something. it wasn't gluten ataxia, BUT it is an autoimmune disease that has been linked to gluten. i was shocked beyond belief to be diagnosed with MS. months later, i still am! i never saw it coming. never felt "sick enough" to worry. sigh. anyhow, if you have a gluten sensitivity and are having some balance problems or other mild neuro signs, it might be wise to check into MS as a possible diagnosis. early dx allows for diet modifications and medications which will limit (hopefully) the progression. if you are interested in knowing morecheck out this informational page i am now on a gluten and diary free diet. so far so good...

I'm sorry to hear that. Have a look at the low dose naltrexone studies and info. It may help you considerably.
http://www.lowdosena...e.org/index.htm
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