Gluten Ataxia?

[meeegun]

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

[cahill]

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??

[ravenwoodglass]

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.

[Takala]

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 Open Original Shared Link

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. Open Original Shared Link

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

Open Original Shared Link

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 Open Original Shared Link

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 Open Original Shared Link

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

[Kim69]

Thanks for the links takala!

[meeegun]

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

[ravenwoodglass]

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.

[eatmeat4good]

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!!!!!!!!!!!!!

[RollingAlong]

Open Original Shared Link 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.

[meeegun]

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 moreOpen Original Shared Link i am now on a gluten and diary free diet. so far so good...

[ravenwoodglass]

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 moreOpen Original Shared Link 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.

[anabananakins]

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 moreOpen Original Shared Link 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.

[Kamma]

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

[frieze]

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!!!!

[Skylark]

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 moreOpen Original Shared Link 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.

Open Original Shared Link

[carecare]

Wish my sister would believe that gluten could be the cause of her MS type symptoms. She's had episodes for the last 8 yrs...possibly longer. Has said she feels she has IBS. She's been to Mayo Clinic several times but never once did they test for celiac. She has large lesions on her brain but the spinal tap was negative for MS so they just say she has "probable" MS. Her last severe attack the dr's said she was even having some seizure activity in her brain. The last time she had a major attack I begged her and her husband to ask the Nuerologists at Mayo Clinic to do a celiac panel and they refused saying "this is not celiac, lets focus on getting her better." So now her and her husband won't even attempt a gluten free diet because they doctors told her it was not celiac ..without even testing her for it. Grrrr... I read about Gluten Ataxia...and it sounds exactly like my sister, have sent her multiple links on it but I don't think she even reads them.

You all are fortunate to have doctors who believe that gluten ataxia exists.

[ravenwoodglass]

Wish my sister would believe that gluten could be the cause of her MS type symptoms. She's had episodes for the last 8 yrs...possibly longer. Has said she feels she has IBS. She's been to Mayo Clinic several times but never once did they test for celiac. She has large lesions on her brain but the spinal tap was negative for MS so they just say she has "probable" MS. Her last severe attack the dr's said she was even having some seizure activity in her brain. The last time she had a major attack I begged her and her husband to ask the Nuerologists at Mayo Clinic to do a celiac panel and they refused saying "this is not celiac, lets focus on getting her better." So now her and her husband won't even attempt a gluten free diet because they doctors told her it was not celiac ..without even testing her for it. Grrrr... I read about Gluten Ataxia...and it sounds exactly like my sister, have sent her multiple links on it but I don't think she even reads them.

You all are fortunate to have doctors who believe that gluten ataxia exists.

I hope you can get your sister to read some of the info. My neuro was clueless also but instead of saying it was probable MS said it was all in my head and the UBO's were meaningless. "Here's a script for Prozac"

If you are a diagnosed celiac your sister should already have been tested by her GP as all first degree relatives are supposed to be tested even if they don't have symptoms.

[Kamma]

That's actually what my neurologist said when I brought up celiac as a possible cause to my problems. In effect his words were, "wow. I never thought of that but you could be right. It's your lucky day cause alot of doctors havent even heard of gluten ataxia as its on the fringes of medical research yet. The only reason I know of it is my sister who had neurologicl problems for 10 years was diagnosed with celiac."

then in his true humble fashion he said, "which doesnt look good on me as a neurogolgist, does it?"

[carecare]

I get tested Dec. 12th....part of me really really hopes I am positive on the biopsy...just so that she'll have proof that she should indeed get tested. I go give blood on the first of December. I was gluten free for a month and a half (as we went to a gluten free household when my son's bloodwork was positive...and then decided to do the biopsies so we went back on gluten for 3 months). I know gluten causes me issues...so regardless of the testing of me and my kids we'll all start a gluten free diet once the biopsies are all taken care of (mid December).

Oh, and my sister has had doctors in the past telling her it was all in her head too....that her symptoms weren't real. Crazy the kind of doctors that are out there.

[Hashithing]

Hi,

I have SERIOUS GLUTEN ATAXIA.  I can tell you sooo much about it.  I was born with Celiac Disease and the GLuten Ataxia.  At this moment I have every last trace of gluten cleaned out of my system to avoid the ataxic effects of gluten on my brain.  After I ingest it, I begin to slur and stumble, lose my balance, even a little beligerrent and behave like a drunk because I have no coordination.  I read the gluten attacks your cerebellum, go figure.  It was so bad before I figured it out that I had to take serious low blood pressure medication everyday to stop a gluten attack in which I will slur, faint, with tachycardia and low pressure.  It went on for decades until I stopped Gluten one day and got diagnosed with Celiac.  12 months after being on the diet, I woke up one day and my Gluten Ataxia was gone and I no longer needed the chronic blood pressure therapy to keep me from passing out everyday which was caused by gluten ingestion.  Also, my so-called Fibromyaglia went away as well.  The diet works, but trace contamination really affects my brain function.  So no french fries from the drive thru anymore.  ALL I CAN SAY is debilitating but not devasting.  Today, I am vigilant about my diet to maintain being free of ataxia symptoms. However, I question what kind of permanent impact it has on the brain as my sensory vestibular system seems blown out. I am left behind with nuerological sensory deficits and medicine helps.  I have difficulty even chopping vegetables and have missed a few time with coordination, ouch! But I have a good qualify life and only time and research will reveal the long term disabilities that may result from this condition.

[Ennis-TX]

Gluten ataxia is SCARY the scariest thing is when your own body turns against you, you own mind turns against you, you mind loops, and you can not think straight. Then the long term nerve issues with loosing motor control, or loss of feelings....to this day I can sometimes grab a pan out of the oven and not noticed it is burning me til it is too late. Bad days and good days with it. I think I talked about it in length in a mental trauma post. There is also the long term brain damage gluten ataxia can cause. I will post some links on these later I am currently a bit busy taking care of some kids.

[artistsl]

My son is five years old and suffers from neuro and psychiatric symptoms when he digests gluten. He tested negative for celiacs. We went to Boston Children's and they entered him in a genetic research study. We traveled to the Mayo Clinic and they offered to perform a gluten challenge and spinal tap from there. We have chosen not to pursue the food challenge/spinal tap, but has anyone here had success with this method as a diagnostic procedure?

[ravenwoodglass]

42 minutes ago, artistsl said:

My son is five years old and suffers from neuro and psychiatric symptoms when he digests gluten. He tested negative for celiacs. We went to Boston Children's and they entered him in a genetic research study. We traveled to the Mayo Clinic and they offered to perform a gluten challenge and spinal tap from there. We have chosen not to pursue the food challenge/spinal tap, but has anyone here had success with this method as a diagnostic procedure?

Have they done an MRI on him yet? If so did they find white spots on it? These are suggestive of the lesions with MS but a spinal tap will not have the bands that are found with MS. I wonder if that is what they want to rule out.  As far as the genetic testing goes there are research studies that have been done that show DQ 9 to also be a Celiac related gene. I had severe ataxia and I have 2 copies of it. Research on the white spots called UBOs (unidentified bright objects) and DQ 9 can be found on peer reveiwed sites.  The research is fairly recent so your doctors may not be up on it yet, even though IMHO they should be. I would have been diagnosed years before I was if mine had known.

[Ennis-TX]

Open Original Shared Link

Covers Gluten Ataxia and different forms and kind of reations to gluten, wheat, and gluten proteins, also covers nerve and brain damage associated with gluten ataxia.

[artistsl]

On 6/10/2017 at 6:38 PM, ravenwoodglass said:

Have they done an MRI on him yet? If so did they find white spots on it? These are suggestive of the lesions with MS but a spinal tap will not have the bands that are found with MS. I wonder if that is what they want to rule out.  As far as the genetic testing goes there are research studies that have been done that show DQ 9 to also be a Celiac related gene. I had severe ataxia and I have 2 copies of it. Research on the white spots called UBOs (unidentified bright objects) and DQ 9 can be found on peer reveiwed sites.  The research is fairly recent so your doctors may not be up on it yet, even though IMHO they should be. I would have been diagnosed years before I was if mine had known.

Yes, we had the MRI, EEG and a large amount of bloodwork. All negative. He would have episodes where he didn't know where he was, auditory hallucinations, insomnia, sensory processing issues, stereopathy, issues with balance and coordination, etc. They were trying to rule out encephalitis. His symptoms disappeared after going gluten free. The decision to go gluten free was discouraged by our neurologist, but desperate people do desperate things and turns out that our neurologist isn't quite as knowledgeable as we had so naively suspected. His symptoms abated after two weeks gluten-free and entirely resolved after four months gluten-free. He's had quite a few accidental glutenings since we started the diet and his symptoms are very consistent. They come back and persist for three long days if he eats a few pretzels. There is no disputing gluten as the trigger. It's mind blowing to witness. Thank you for sharing your knowledge and experience. I'm relieved to hear that there have been additional genes implicated because my heart breaks for every single person who suffers from the lack of knowledge.