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April 12, 2011 @ 2:18 pm

Gluten Ataxia

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SS found a fascinating article and emailed it to me this morning.  It’s brought on one of those “Wow!” reactions for me.

We’ve discussed, many times, some problems I have with balance and gait that are kind of upsetting to me.  Up to now, I’ve chalked them up as being symptoms of my ADD/Executive Function or Fibromyalgia, or a combination of both.  We were talking about it last night, in fact, in relation to ADD.  I tend to do some things very slowly, like climbing stairs, because I need to concentrate on each step in order to not lose my balance.  I’ve had a terror-fear reaction to escalators for as long as I can remember.  I remember, when I was little, getting my toe pinched as I stepped off of an escalator and I always thought that was the origin of the fear, but my reaction is clearly a fear of falling.  I’ll walk out of my way to use an elevator rather than an escalator, and I hate the flat people-movers, too, like the ones at the Philadelphia airport.  (I see I even mentioned this in the post I linked to, above.)

The article that SS found today is about Gluten Ataxia, a little-known neurologic condition that may be a form of gluten sensitivity.

Gluten ataxia is a neurologic condition characterized by the loss of balance and coordination. However it can also affect fingers, hands, arms, legs, speech and even eye movements. Typical symptoms include difficulty walking or walking with a wide gait, frequent falls, difficulty judging distances or position, visual disturbances and tremor.

Experts believe gluten ataxia may be a form of gluten sensitivity, a wide spectrum of disorders marked by an abnormal immunological response to gluten.

Different organs can be affected by different types of gluten sensitivity. In celiac disease, sometimes called gluten-sensitive enteropathy, the small bowel is affected. In dermatitis herpetiformis, the skin is targeted, resulting in an itchy rash. With gluten ataxia, damage takes place in the cerebellum, the balance center of the brain that controls coordination and complex movements like walking, speaking and swallowing.

Purkinje cells in the cerebellum, key in maintaining balance, are thought to be lost in gluten ataxia.

As I read, I saw aspects of myself all through the article.

Bob Hunter, 63, a patent agent from the Big Island of Hawaii, also has gluten ataxia. His wife first noticed back in 2004 that his hands were shaking when he moved them, like reaching for his coffee cup.

“If you want to grab something, you don’t think about all the things necessary to make that happen. You just close your hand around it and do it. But if that part of the brain isn’t working well, you have to be more conscious of every muscle needed to perform the task,” says Hunter.

Like Bosse, Hunter experienced brain fog and problems with his balance, stubbing his toes and ramming his shoulders on door frames as he tried to walk, clumsily, through his house. He appeared drunk. Embarrassed, he was quick to reassure those around him that wasn’t the case.

Before I was gluten free, my hands used to shake all the time, enough that people noticed and commented on it.  When I went gluten free, my hands stopped shaking so much and now it only happens occasionally.

I also have a problem with my right thumb which is less severe than it was before I went gluten free.  It’s mostly a grasping problem.  It used to be so bad that if I reached for a glass to have a drink, my thumb would “forget” to move and I’d either knock the glass over or drop it once I picked it up.  Even now, I tend to drink water out of a plastic cup because I have a fear of dropping glasses.  The thumb thing still happens occasionally, but is now mostly only a problem with smaller movements, like when I peel open one of those single-serve coffee creamer things.  I have to slow down and focus on my thumb and “tell” it to move or grasp.  I also sometimes find that when I’m typing, that thumb tucks under my hand in a weird way.  I started using my left hand for mousing, several years ago, because of the thumb problem, because the thumb would tuck in a weird way and turn the mouse at a funny angle.

I also consistently whack into doorways, sometimes hard enough that I bounce off of the frame and stumble.  I go around with bruises that I don’t remember getting, because banging into things is such a common occurrence.  Many times, I have been standing and talking to someone and then stumbled backward as if someone pushed me.

There was something else that jumped out and grabbed me in this article.  It was the mention of “molecular mimicry”.

“There’s fairly good evidence why celiacs could have neurologic problems like ataxia,” says Joseph Murray, MD, a gastroenterologist and celiac expert at the Mayo Clinic. Vitamin deficiencies or a phenomenon called molecular mimicry could be to blame. In molecular mimicry, something in the brain may look enough like gluten that antibodies directed at the small bowel cross-react against part of the brain.

I took that to mean that there could be something in the brain that could mistakenly cause the same sort of reaction that gluten does, even when no gluten is present, and I wondered if that might explain some of my “mystery glutenings” or symptoms I’ve recently begun thinking might be serotonin/IBS related, or if it may even explain the small percentage of Celiac patients who have Refractory Sprue (also sometimes called Unresponsive Celiac).

After googling and finding this article on molecular mimicry, though, now it seems as if it works almost the other way around, happening when the foreign invader (the gluten protein, or whatever the particular problem is) is introduced, and then the immune system attacks both the foreign invader and the string of similar amino acids in the body:

If the protein fragment from a foreign invader which is presented to the T cell closely resembles part of a self protein then the activated immune system will not only attack all foreign invaders which have the same string of amino acids but will also attack a very similar string in a self protein.

So now I’m confused about that, but still curious and interested in better understanding the connections between autoimmune disorders.

I made a file and I’m going to start printing things like this article and other information I’ve found that sparks that “Aha” reaction, my spreadsheet of supplements that I take, and a new spreadsheet of overlapping symptoms between the various issues I deal with.  This new spreadsheet will be an updated version of the one I linked to in this post from before I found out I had ADD, and I want to make it easier to read in the process of redoing it.  I’ll be seeing my new gastro doctor in June, and I’m going to look for a neurologist who will test for Gluten Ataxia at the same time that I’m doing the gluten challenge for the Celiac testing.  SS and I attended a group meeting last night that I will blog about soon (so glad we went!), and I learned of a psychiatrist I am going to contact for the ADD, and I also learned of a holistic doctor who does a lot of work with amino acids and neurotransmitter testing.  I’m hoping to be able to work with him, and that maybe, by taking my file with me to see each of those doctors and discussing the overlapping symptoms with all of them, I may hopefully be able to get proper testing and nail down some of the things I haven’t been able to work out properly for myself.

If it turns out that I have Gluten Ataxia, while it may not be possible to reverse the damage already done, I am hoping that knowing “yes or no” will lead me in the direction of what to do about it.  Either way, I am sure that exercise (still the one thing I have the most trouble taking from concept/planning to actual doing) will help considerably, no matter what is causing the symptoms.  If it isn’t Gluten Ataxia, but is caused by the Fibro or the ADD, then maybe some changes in supplements and further changes in diet may help, in addition to exercise.  If it is Gluten Ataxia and I have actual damage, there may still be hope through physical therapy, especially since my symptoms are nowhere near as severe as those of the woman written about in the article.

Those with gluten ataxia have no time to waste, he warns. The gluten-free diet—the mainstay of treatment for gluten ataxia—can result in a stabilization of symptoms. But often, significant damage is already done.

The neurologic system tends to heal very poorly and very slowly, says Murray. Unlike the small bowel lining, Purkinje cells of the cerebellum have no capacity for regenerating, explains Hadjivassiliou. Once ataxia is well established, which can happen in as few as six months, it’s rare to make a full recovery.

Extensive damage helped explain why, even after going gluten free, Bosse continued to have debilitating symptoms. Her ataxia was advanced. It’s not unusual to be wheelchair-bound at diagnosis, Murray says.

However, the outlook isn’t grim. In addition to dietary intervention, physical and occupational therapy can make a big difference.

One way or another, I am determined to feel better.  Other than the moments of feeling completely hopeless when things get to be too much, I have remained driven by a deep-felt belief that it is possible to correct many of the causes of what is happening and to have a good amount of control over how I feel.  The thing is, that depends on being able to find information that is difficult to find, and on finding a group of knowledgeable doctors with open minds and a willingness to hear me out and answer my questions, to help me fill in the gaps of what I don’t know.

21 Comments

  1. Comment by kate1975:

    Hi Tamp,

    Thanks for posting about this. I did not know that there was a name for this. All of these issues are pretty common for me, after an exposure, but it does get better, so I do know it is possible to have the same symptoms, and get better once the effects of the glutening passes. It is disconcerting to think that it might be something that never goes away. I’m glad that you have had some relief from some of your symptoms. That is a positive thing.

    I get the loss of balance and inability to focus well when I should, like when walking, balancing, grasping and holding, from a gluten exposure. Along with this is a loosening of my tendons and muscles, which tends to lead to injury very easily. It was very pronounced last year at Easter when I went out to a buffet and ate foods I was not sure of. I also get a pronounced light sensitivity. I sometimes have the numbness, tingling, and pain to my extremities. Mostly, I think, that is due to my other health issues, but I do notice a huge difference now that I take vit d and I don’t have a deficiency any longer. But the problems still do tend to come and go.

    I think it is great that you are wanting to be tested. Good and healing thoughts to you.

    Kate

  2. Comment by davidrochester:

    I’ll be damned. This was very interesting…I have most of these symptoms, and was diagnosed with “atypical” Meniere’s Syndrome. However, I’ve noticed an improvement since I cut back on any type of grain products. Hmmm. I have always been terrified of escalators…I can’t judge speed or distance, and I always step onto them the wrong way.

    • Comment by lifeischange:

      Wow, David, yes, that’s it – my fear of escalators is that I will step on the “crack” that rises up and becomes the step, rather than stepping fully on the step, and that I’ll fall. But the movement freaks me out as well. . .

      My mother had Meniere’s Syndrome for years. I’m not sure if she is considered “cured” now, or if one can actually be cured, but she is mostly symptom-free as far as the wicked vertigo she used to have. She had two ear surgeries when I was a kid (in the 60’s) and some of the “balance center” was removed (I’m not sure what that means, specifically), so she still has balance issues, but not nearly as bad as she used to.

      It’s so interesting, because I believe Meniere’s is autoimmune, as is Celiac Disease, and Fibromyalgia, diabetes, thyroid issues . . . and I’ve read that MVP, which you had said once that your mother has and your grandmother had, is more prevalent among patients with autoimmune thyroid disease, and the autoimmune stuff runs in families.

  3. Comment by SARAH BOSSE:

    My name is Sarah Bosse. I was a participant in the article you saw that you found so interesting. 🙂 I’m writing because I want to offer any help I can give. Feel free to contact me through http://www.livingwithataxia.org or through “gutsy girl sarah bosse [at] gmail [dot] com” (please format as a normal email address). Obviously I’m only a patient, not a doctor, but I’m glad to give my 2 cents as well as point you to helpful resources. Same goes for anyone else reading this blog post. Take care!

    Gutsy Girl,
    Sarah Bosse

    • Comment by lifeischange:

      Hi Sarah. Thank you so much for your comment and link! I am going to link to your site and will be doing a lot of reading and learning over the next month or so! I see the gastro doctor on June 2nd, and I will be talking with him about Celiac testing, and I will also ask him about trying to coordinate the testing date(s) so that I can also see a – neurologist? Is that who I would see about suspected ataxia? – to be tested for gluten ataxia at the same time I’m being tested for Celiac.

      Thank you so much for your offer to share helpful resources, etc. I very well may be emailing you to ask you some questions . . . 🙂

  4. Ping from If Only I Weren’t Such A Fan of Chocolate . . . | life is change:

    […] reminded me of something I’d read last month about “molecular mimicry“, and it felt familiar and like some puzzle pieces fell into […]

  5. Comment by Julie:

    I have gluten ataxia. Before going gluten free, have the blood work and an upper GI scope done. Otherwise the blood work will be a false reading. There is no neurological testing specifically for gluten ataxia. I would print up the article “From Gut To Brain”, by Dr Marios Hadjivassiliou from Sheffield, UK and give to your GI and neurologist. Doctors want to read medical publications, not patient stories. It made all the difference in the world with my neurologist. My GI was already familiar with gluten ataxia.
    Since I went gluten free I’ve gotten most of my health back. Unfortunately, because I was in my 50’s and sick for so long I haven’t recovered 100% from my brain problems. I had NO tummy symptoms. Get tested asap. Don’t guess any longer please. I’d love to hear how you’re doing. I’m also apart of the group Sarah mentioned: LivingWithAtaxia

    • Comment by lifeischange:

      Thank you, Julie.

      Actually, I’ve been gluten free for four years. I didn’t learn until several months after going gluten free that I should have been tested first. I just tried it to see if I would feel better, and the difference was so profound that I never went back. I was tested for the DQ2 and DQ8 genes recently and came out negative (the gene test doesn’t require consuming gluten for accuracy, so that was why I started there). According to the negative result, I probably don’t have Celiac Disease, but it doesn’t rule out Gluten Sensitivity.

      Thank you for recommending that article. I printed it and am adding it to my binder that I take to all of my doctors’ appointments. I have all sorts of articles and information in there, so that I can discuss the topics that apply with each doctor I see.

      I’ve also been speaking with some specialists about Sensory Integration Disorder, which I haven’t blogged about yet, and which also has some overlapping symptoms similar to some of those that go with Ataxia. Hopefully, after my “Summer of Specialists Consults” is over, I’ll have more clear answers, and I hope I’ll know whether my balance/gait issues are due to gluten ataxia, sensory integration disorder, some of each, or neither. And then, of course, what I can do about it in terms of physical therapy, exercise, etc.

  6. Ping from Concerts . . . and . . . Adult Sensory Integration Disorder | life is change:

    […] in recent months, I have wondered whether I may have gluten ataxia, and have been wondering how much of my balance/gait issues are from the Fibromyalgia.  More […]

  7. Comment by MR! Stoner2udude:

    I just found some articles on Gluten Ataxia and it was a Wow! moment for me too. Although I knew when I ate gluten foods, it brought on these symptoms. Hard to form thoughts/words, Off balance and poor motor coordination. These all improve when I eat gluten free. I hope it’s not too late to reverse them. And I hope you’re doing better too. One week strictly gluten free and I feel much better.

    • Comment by lifeischange:

      Thank you for your comment (and sorry for being so slow in replying). I hope you are continuing to feel better. I’m curious to know if your symptoms have begun to reverse since you have been gluten free.

  8. Comment by Chris Rosser:

    my 2year old cant walk, sit, crawl has only recently started eating baby food, he has frequent constipation? could this be Gluten Ataxia, he has been given the label, global development delay, please visit his website http://www.aidanrosser.org.uk, i have no diagnosis at present.

    • Comment by lifeischange:

      Hi Chris,

      I read Aidan’s web site and I can certainly understand your frustration and your need for an answer. I’m not a medical professional; just a patient who has been putting together her own health-issues puzzle, but I have heard that some parents of children with developmental delays have found a gluten free diet to be helpful. Here is one article with some good advice: http://www.livestrong.com/article/481473-gluten-free-diet-for-kids-with-developmental-delays/. It might be worthwhile to discuss with Aidan’s doctors.

      I have read of connections between gluten intolerance and autonomic nervous system problems. This article (http://www.celiac.com/articles/21880/1/Is-Gluten-Sensitivity-a-Neurological-Disease/Page1.html) mentions Dr. Rodney Ford’s research, and this paragraph jumped out at me: “Dr. Ford argues that gluten exposure can cause neurological harm through a combination of cross-reacting antibodies, immune complex disease and direct toxicity. These nervous system affects include: dis-regulation of the autonomic nervous system, cerebella ataxia, hypotonia, developmental delay, learning disorders, depression, migraine, and headache. He calls such neurologically-driven sensitivity to gluten ‘The Gluten Syndrome.'” Dr. Ford has a web site at http://www.drrodneyford.com/extra/doctor-gluten.html.

      I hope you will be able to find answers soon, for your son and your whole family!

  9. Comment by Karen:

    I think that Gluten Ataxia can be improved. I think I have it, My Child thinks she has it and sent me on a google hunt for it. I have been gluten free for 3 years. I have been glutened maybe 6 times, mostly when I was still learning.
    My whole life I have been dopic. I am the kid that tossed a ball backwards when playing the outfield in gym class.

    I shocked my self last fall when I tossed a rock at a tree and hit it! I I have also shocked my self by catching things without thinking about it. Several times I even caught a toy tossed to me my a dog. I could have never done this as a kid. So do not give up hope, I improved and I hope you do also.

    • Comment by lifeischange:

      Thank you, Karen. It is great to hear that symptoms can apparently be reversed! I believe, in my case, that my symptoms are from a combination of causes, but I do have a lot of hope that once I know what those causes are, I’ll be able to stop and/or reverse my symptoms. I am already doing so much better, overall, than I was a few years ago.

  10. Comment by StephinBoston:

    Hi everyone, these comments bring tears to my eyes.. I have a 5 year old boy with a diagnosed wheat/gluten intolerance that only manifested itself in the symptoms most of you list above. I’m convinced he has gluten ataxia, now off the gluten for 1.5 months, he’s so much better, better coordinated, doesn’t fall, bump into things and is able to concentrate in school. The school has him on PT, OT and Speech Therapy but I’m thinking of adding more outside the school to help him recover faster. Good luck to all of you, this is a very poorly documented condition, it’s good to see more and more research.

  11. Comment by Sandy Dell:

    Great post! Thanks for sharing. I was diagnosed with gluten intolerance about 3 years ago. At that time I was being treated for early stages of Alzheimers. What a relief when I found out it was gluten.

    I am doing better now, but reading your story (plus the one in Living Without magazine) I am certain that I have/had a milder case of Gluten Ataxia.

    Maybe is sounds silly, but I am glad to see that I am not alone with my symptoms. I have published my story if anyone is interested:
    http://www.squidoo.com/living-with-gluten-and-dairy-allergies

  12. Comment by laura:

    hi….. this website will help you…. http://www.dadamo.com

Thoughts?

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