Gluten Ataxia (only)?

[tiredofdoctors]

debmidge: I am sorry I got your name wrong on my last post. I apologize. As for the neuropathy -- I have had other autoimmune issues and have Raynaud's phenomenon, so both my hands and feet get numb and blue. I don't think that the neuropathy was the initial presenting symptom of my ataxia, though.

[Claire]

debmidge:  I am sorry I got your name wrong on my last post.  I apologize.  As for the neuropathy -- I have had other autoimmune issues and have Raynaud's phenomenon, so both my hands and feet get numb and blue.  I don't think that the neuropathy was the initial presenting symptom of my ataxia, though.

<{POST_SNAPBACK}>

That certainly sounds like a therapist's dream. You did get to do it - even if not for the long haul. Stop and think real hard. Is there any way you can reconstruct the dream? You wouldn't be able to do it alone but with another dedicated therapist and you as a guidiing hand you might still be active in helping others - and yourself as well. Claire

[Claire]

Hi Claire!  Correction -- I can walk, but like a drunk.  I stagger, bob and weave, and fall a LOT!  It's like someone is turning a light switch on and off on my muscles -- they give out, then overcorrect.  I use a walker for short (very short) trips, but a chair for any length of time. I also have some neuropathy/myopathy issues.  The neuropathy we knew about -- the myopathy we just found out about through a second muscle biopsy.  They're still puzzled in that I have a profound amount of muscle fatiguability -- as I said about the Frenkel's exercises, 12-14 minutes of work, and my muscles are jello.  After posting to the message board, my arms are finished.  It takes about 30 minutes to recover.  Strangely, baths are the worst -- can't get out of the bathtub independently.  Sounds a lot like MS, but so far I have only 3 lesions on my brain which has not changed as this has progressed, and I have a new lesion at C2-3 on the cord.  No oligoclonal banding in the CSF previously.  Haven't had a Tensilon test, but don't have anticholinesterase antibodies.  Any thoughts????

<{POST_SNAPBACK}>

Me too. I stagger most to the left, don't really weave much and so far have not fallen. My issues are complicated by a serious eye problem caused by a negligent surgeon. This effects depth perception and convergence. Now the ataxia has nastagmus on the sidebar so that just makes bad matters worse.

Ataxia - from almost any cause - certainly looks a lot like MS except the MRI may not show such widespread brain involvement. I wonder a little if these two diagnoses don't get mixed up from time to time. Of course MS is also one of autoimmune spingoffs related to celiac disease.

No real suggestions - just idle thoughts. Have you had more than one opinions?. With all these symptoms I would want to be sure the good doctor isn't mixing things up.

Nofaithindoctors - what do you have to say? Claire

[Claire]

Sorry I got a name wrong. Tiredofdoctors - not nofaithindoctors. Claire

[tiredofdoctors]

Hey Claire:

No Faith in Doctors should be my nickname considering the experiences I've had! I've been to both Mayo and Hopkins -- talk about pompous idiots. I've developed nysgtagmus more recently, as well. I'm having retinal degeneration (they're comprised of perkinje cells, as well) so I've started developing night blindness and colorblindness. It's odd never having had it before, trying to stare at things to see if by some chance I can see it!

Hopkins blew me off immediately. Within 18 hours of being admitted, the doctor came in to have a 1 1/2 hour talk with me about "considering that emotions can cause you to have physical symptoms which aren't rooted in a real disease." I asked him if emotions could cause Hashimoto's thyroiditis and elevated antigliadin antibodies. He didn't say anything.

Same thing at Mayo. The rat-ba****d that I saw there told me during my evaluation that I needed to think outside the box. I looked at my husband,then back at the doc and said "How far outside the box are we talking?" He then started describing in very condescending terms conversion disorder, and he wanted me to see their psychiatrist. I have ADHD, so I see a psychiatrist regularly for med checks, and have discussed the possibility of conversion syndrome with her. She said that she just doesn't see it. She has me seeing a counselor to help with adapting to this disability - I've asked her the same, and she said there is nothing I have said that would indicate it. I told the Mayo doc that, but he still wanted me to see their shrink. I did, and he said "I know what the doctor wants me to say, but I just can't see that you have conversion syndrome. You have no evidence at all that conversion is either contributory nor causitory, and that's what I'm going to write in my summary." The Neuro doc wrote a summary to my primary care doc that I have conversion syndrome. It doesn't help that I hacked him off when he said that "as physicians we try to do everything humanly possible to help our patients" and I told him that he had just hit on the key word -- human -- and that I certainly didn't expect him to be perfect, and that I was O.K. with him making a mistake. His whole chest, neck & face became fuschia, and my appointment was over. I left without much information, but satisfaction that at least I told the MD what I thought.

MS is a spinoff of this, and I think that's where the neuro here is starting to look. Sinced the signs are becoming so prevalent, validating the symptoms, he seems to be starting to take this pretty seriously. Waiting to hear about the spinal tap -- and doing the gluten-free thing 100% now. It's not too bad. I found some really good breakfast cereal "Puffins" -- but there is only one flavor that is gluten-free. Also, Kellogg's started putting wheat starch in their Corn Pops this year, but the Kroger brand doesn't.

Okay, I'm rambling . . . talk to you later!

[Claire]

Hey Claire: 

No Faith in Doctors should be my nickname considering the experiences I've had!  I've been to both Mayo and Hopkins -- talk about pompous idiots.  I've developed nysgtagmus more recently, as well.  I'm having retinal degeneration (they're comprised of perkinje cells, as well) so I've started developing night blindness and colorblindness.  It's odd never having had it before, trying to stare at things to see if by some chance I can see it!

Hopkins blew me off immediately.  Within 18 hours of being admitted, the doctor came in to have a 1 1/2 hour talk with me about "considering that emotions can cause you to have physical symptoms which aren't rooted in a real disease."  I asked him if emotions could cause Hashimoto's thyroiditis and elevated antigliadin antibodies.  He didn't say anything.

Same thing at Mayo.  The rat-ba****d that I saw there told me during my evaluation that I needed to think outside the box.  I looked at my husband,then back at the doc and said "How far outside the box are we talking?"  He then started describing in very condescending terms conversion disorder, and he wanted me to see their psychiatrist.  I have ADHD, so I see a psychiatrist regularly for med checks, and have discussed the possibility of conversion syndrome with her.  She said that she just doesn't see it.  She has me seeing a counselor to help with adapting to this disability - I've asked her the same, and she said there is nothing I have said that would indicate it.  I told the Mayo doc that, but he still wanted me to see their shrink.  I did, and he said "I know what the doctor wants me to say, but I just can't see that you have conversion syndrome.  You have no evidence at all that conversion is either contributory nor causitory, and that's what I'm going to write in my summary."  The Neuro doc wrote a summary to my primary care doc that I have conversion syndrome.  It doesn't help that I hacked him off when he said that "as physicians we try to do everything humanly possible to help our patients" and I told him that he had just hit on the key word -- human -- and that I certainly didn't expect him to be perfect, and that I was O.K. with him making a mistake.  His whole chest, neck & face became fuschia, and my appointment was over.  I left without much information, but satisfaction that at least I told the MD what I thought. 

MS is a spinoff of this, and I think that's where the neuro here is starting to look.  Sinced the signs are becoming so prevalent, validating the symptoms, he seems to be starting to take this pretty seriously.  Waiting to hear about the spinal tap -- and doing the gluten-free thing 100% now.  It's not too bad.  I found some really good breakfast cereal "Puffins" -- but there is only one flavor that is gluten-free.  Also, Kellogg's started putting wheat starch in their Corn Pops this year, but the Kroger brand doesn't. 

Okay, I'm rambling . . . talk to you later!

<{POST_SNAPBACK}>

It's nice to have a place to ramble, isn't it? Have you read a post that I put up about what my neurologist said about gluten? Essentially what he said was that gluten should come out of the diet of any patient with a neurological disorder - regardless of the diagnosis. He went on to say that it definitely mediated in cases of MS, Lupus - also fibromyalgia and CFS. Though not the primary cause of these diseases (at least theoretically) it does seem to have an irritant quality. So I will be gluten free regardless of what is finally determined. Claire

[tiredofdoctors]

Here, Here! My (two) neurologists here now insist that I'm going to continue to get worse and have inferred that I could develop other autoimmune diseases unless I go gluten-free. I think I was just shopping for someone to tell me that this was going to go away and that all my neuro symptoms were going to reverse -- without me having to take responsibility for it! Mostly, I wanted them to tell me it was going to reverse. I've resigned myself to "this may be as good as it gets", and, despite the disabilities, I have a really good life! And, yes, it is GREAT to have a place to ramble!

[julie5914]

I have started getting lots of neurological symptoms after going gluten free. My doctor is looking into my adrenals. Something to look into if you haven't already.

[Claire]

Here, Here!  My (two) neurologists here now insist that I'm going to continue to get worse and have inferred that I could develop other autoimmune diseases unless I go gluten-free.  I think I was just shopping for someone to tell me that this was going to go away and that all my neuro symptoms were going to reverse -- without me having to take responsibility for it!  Mostly, I wanted them to tell me it was going to reverse.  I've resigned myself to "this may be as good as it gets", and, despite the disabilities, I have a really good life!  And, yes, it is GREAT to have a place to ramble!

<{POST_SNAPBACK}>

Glad to hear that reality has set in. Sorry that it has to be that way. Gluten free is absolutely essential. For once doctors are right. Reverse - no. You are probably right that "this is as good as it gets". You may or may not prevent other autoimmune diseases. I guess that must depend on what kind of damage has already been done. When reading The Gluten Free Bible I noticed that the author was diagnosed a couple of years ago with Sjorgens (sp?) - an autoimmune Disease. She has been gluten-free since the 1980s. We can hope that gluten induced ataxia will stabiliza once the instigator is no longer present.

Ramble on. Claire

[tiredofdoctors]

Hey Guys! Julie 5914: I have had issues with lowered DHEA levels and increased cortisol levels, so I will ask my endocrinologist about the adrenals when I see her in a couple of weeks. Thanks for the info. Claire: I was diagnosed with Sjogren's, also. Psoriatic arthritis, also -- but the neurologist is starting to be suspicious that it is dermatitis herpatiformis -- he wants to do a skin biopsy when (if?) I have another breakout. Tell me more about the book you have -- is it Dangerous Grains? or is it really the Gluten Bible?!! At this point, I have only one book, but it has been really helpful -- it'sGLUTEN-FREE DIET A Comprehensive Resource Guide by Shelley Case, RD. It has a lot of info about gluten-free foods, companies (inc. internet and mail-order), and caveats about ingredients and FDA labelling.

I made gluten-free pancakes for dinner this evening -- added ground flax seed to the batter -- my husband and I thought they were pretty yummy. (The soup I was making wasn't NEAR finished, so we opted for Door #2). I think this gluten-free thing isn't going to be nearly as bad as I thought it was going to be. I guess the dread was worse than the deed! I posted on another thread -- it's kind of like I used to cook when the kids were little -- I was "earth mom" -- made my own spaghetti (noodles), granola -- everything had to be unbleached, blah, blah, blah! I feel like I'm getting back to my roots! I'm lucky that my husband is REALLY supportive, and he likes my cooking a lot, so he's pretty excited that I'm experimenting with new recipes.

Oh yeah, Claire: thanks too, for the support and for not being judgemental about my denial. You've been a big help, and I appreciate it.

[Claire]

Tell me more about the book you have -- is it Dangerous Grains?  or is it really the Gluten Bible?!!  At this point, I have only one book, but it has been really helpful -- it'sGLUTEN-FREE DIET  A Comprehensive Resource Guide  by Shelley Case, RD.  It has a lot of info about gluten-free foods, companies (inc. internet and mail-order), and caveats about ingredients and FDA labelling. 

I made gluten-free pancakes for dinner this evening -- added ground flax seed to the batter -- my husband and I thought they were pretty yummy.

Oh yeah, Claire:  thanks too, for the support and for not being judgemental about my denial.  You've been a big help, and I appreciate it.

<{POST_SNAPBACK}>

I have only two books - Dangerous Grains and the Gluten Free Bible. Each book is good but the Bible is references sources, groups, doctors etc - more of aa pratical resource than the other one which is more subject oriented. The Bible deals with the celiac subjec too. I personally have a little trouble with the author of The Gluten Free Bible. I think her affluence is showing. Maybe some of her readers go to the Alps, to resorts and high priced restaurants but many too not. The book really turned me off with that. I couldn't be that assertive in a restaurant unless I intended to leave a tip as large as the check. She probably does. It is a good book. This is just me doing a personal rant on what irritated me.

Pancakes sound good - except for the flax seed. Now that would really kill me. There are some great gluten-free cereals that I have to eat a spoonful instead of the cupful I would like because they use flax seed. It is in a lot of things. Not for me!

If I have helped at all, I am glad. Keep in touch. Claire

[tiredofdoctors]

If you've helped at all????? Are you kidding????? You have helped a LOT! I did find The Gluten-Free Bible -- I really like the references for fast foods and things like that -- but I do agree that her affluence comes SHINING through. Like we can go to the Alps. I had to stop working last year -- our only "vacation" was going to the Mayo Clinic -- and probably will be for the next 10 years! It does have some valuable information in it, though, and it's already come in handy. Thanks bunches. Lynne

P.S. You know, the flax seed probably wasn't such a great idea -- my husband and I both felt the ramifications later that night!

[NewConcerned]

Hi- I am new on here, I posted something under another topic, but it seems that some of you may be able to give me some advice.

I have been having strange neurological symptoms for a few months now. I have had muscle twitching all over...body jolting that wakes me up when I'm sleeping...sudden (not noticeable to others) involuntary movements all over my body. The whole episode started when I had horrible knee pain and went through tons of blood tests and MRIs showing nothing wrong...but the celiac sprue blood test came back borderline positive.

What do these symptoms mean? I have been eating gluten-free for about 2 weeks now and I did notice some improvement, but it goes through phases where I'll have a few bad days and then a few good days- I may be ingesting some gluten b/c I am just learning about the diet.

I have always had a bad stomach (gets upset frequently) but never associated it to anything serious.

My main concern in the neurological symptoms- after reading this page, I am more concerned b/c it seems as though it will only get worse? I was under the impression that if I ate a strict gluten-free diet, then the symptoms would slowly go away.

I am seeing a GI dr in a week, but I trust the opinions of people who have actually gone through it. Thanks to anyone who wants to help!!

[Claire]

My main concern in the neurological symptoms- after reading this page, I am more concerned b/c it seems as though it will only get worse?  I was under the impression that if I ate a strict gluten-free diet, then the symptoms would slowly go away.

I am seeing a GI dr in a week, but I trust the opinions of people who have actually gone through it.  Thanks to anyone who wants to help!!

<{POST_SNAPBACK}>

Hi there - welcome. I am quite new here myself though the two months since August have gone quickly. Neurological stuff can be intimidating but slow down, relax and take all this one step at a time. The GI fellow probably won't help much with the neuro symptoms you describe. Best to make an appt. with a neurologist (ask if he has any celiac patients). If he is any good he will recommend an MRI of the brain. This is wise to do - if not for a definite diagnosis then for the process of elimination. Process of elimination is the way to go when there are a lot of unknowns. Let them find out what you don't have and then move on to another possibility and so on until you get Eureka! Sounds slow and frustrating. It is both. But there are a lot of people here to talk with you and support you while the investigating goes on. Keep on talking to us. Claire

[NewConcerned]

Hi Claire,

I actually did have an MRI of the brain- I have seen every specialist besides the GI!! So, I'm hoping I've arrived at an answer. The neurologist did not seem to think I had a neurological problem- at the time I saw him, however, I did not have as many neurological symtoms yet. But, I'm basically wondering if these symptoms sound like celiac disease to anyone? I have had every test done, and ruled out a lot of bad things. It is frightening though b/c sometimes it's hard to believe everything the dr's say (they all tell me to see another specialist!!) But, seeing that the celiac blood test came back borderline positive, it's the only result that came back abnormal.

So, are you saying that the neurologist treats symtoms of celiac disease? That isn't in the domain of the GI?

-Lindsay

[Claire]

Hi Claire,

  I actually did have an MRI of the brain- I have seen every specialist besides the GI!! So, I'm hoping I've arrived at an answer.  The neurologist did not seem to think I had a neurological problem- at the time I saw him, however, I did not have as many neurological symtoms yet.  But, I'm basically wondering if these symptoms sound like celiac disease to anyone?  I have had every test done, and ruled out a lot of bad things.  It is frightening though b/c sometimes it's hard to believe everything the dr's say (they all tell me to see another specialist!!)  But, seeing that the celiac blood test came back borderline positive, it's the only result that came back abnormal.

So, are you saying that the neurologist treats symtoms of celiac disease? That isn't in the domain of the GI?

-Lindsay

<{POST_SNAPBACK}>

Hi again Lindsay, If you have had a recent MRI that eliminates any neurological disorder caused by brain changes then that would eliminate one possibility I think I would go back to him again. I have had three neurologists in the last four months and they all have a different opinion! It sounds like you probably do have celiac. The symptoms differ so from one person to another. You sound like RLS but over your whole body rather than just legs! Not nice. Your symptoms could be celiac disease only. Are you now on gluten free diet?

As to your question about neurologists and GI specialists: you may see many different docs because celiac can lead you into other autoimmune diseases that don't belong in the GI field.

Yes neurologists deal with the neurological problems that spin off of celiac. The GI doc may not even know there are any. If your 'neuro' problems are worse and the doctor still doesn't think it is serious - get another opinion (neurologist) . It is serious to you. Also ask him if it isn't a neurological problem, what is it. Insist on answers.

Some celiac disease patients have no GI symptoms at all. Neurological symptoms are more common than most would like to know about. I am one with the neurological problems so I do know a bit about what I am talking about. Claire

[tiredofdoctors]

Hi Lindsay -- Welcome! I've had autoimmune symptoms for years that just went undetected because I used to be a very passive patient. I started having neurological symptoms a 1 1/2 years ago, starting with my eyes, we think. I started having difficulty walking around September of last year, then things progressed from there. The first neurologist I saw diagnosed me with autoimmune cerebellar disease. The second opinion neurologist said "you have celiac disease" and told me to go gluten-free. I went to a GI doc -- I was confirmed non-celiac by bloodwork & biopsy -- BUT -- and here's the caveat -- Claire's statement about what her neurologist said coincides with both of mine -- if you have elevated antigliadin antibodies regardless of symptoms or not, you must go gluten-free. Perkinje cells are the cells which are in the cerebellum of the brain and the retinas of the eyes. They rely on Gliosis -- a process involving gliadin. With antigliadin antibodies, you then develop anti-perkinje cell antibodies -- and then the destruction begins. I should have listened to the doctors here in the very beginning when they told me to go gluten-free. It's not that hard, really, and it's rather healthy! Surround yourself with docs who are knowledgeable about not only "Celiac Disease" proper, but the ramifications of gluten intolerance. (By the way, I have a post earlier about Mayo and Hopkins -- you might want to read it -- but it's basically a rant!) Good luck to you, and keep (us) posted. BTW: Claire is really knowledgeable about this -- she has given me really good info, and an occasional reality check!!

[lizzy]

hi all

first of all am new here and have spent a lot of time reading through the posts and was quite pleased to know that am not on my own in having neuroligical problems,

i have seen 3 different neuroligist and no one as found a tie between the celiac diease and the ataxia i was doing research on the internet and found a link and email a doctor in england who told me more about the link.

i stared with 2 years of chronic diarrea , the gastro docs thought it was crhons, but after a test it wasnt.i had a lactose test , no help took my gall bladder out , no help. in the end i got fed up of going to the gastro doc and thought i will just deal with the diarrea,

then in sept last year i started with a tremor then it moved onto painful muscles and joints, i gave up my full time job because i was so fatigued and in pain i couldnt function normal.then i started feeling a tingling in my arms and legs when i was sat still. went to the first neroligist who said i had essential tremor. in june i had my first seizure and convultions which took me to the er and admitted for tests. on a ct scan they found i may have celiac diease but no one told me to stop eating gluten.and nothing else to expain my neurolical problems. my seizures got worse and convultions i didnt know what could be bringing them on. another nerouligist said it wasnt essential tremor but didnt know either what it could be. but it was getting very progressive. i have had been told maybe its huntingtons, wilsons diease, but my blood test are fine, then i found a link to celiac and ataxia. so i quit the gluten and found the seizures have stop but i still have the tremor and muscle and joint pain. i too have to go around in a wheel chair the walking around makes me shake and be painful in my thigh muscle that i cant stand it.

i am seeing yet another neroligist next week and am taking my findings from the internet of the link and seeing if this is what my problem is. some days i feel quite well if i totally dont do anything but when i start moving like today i feel back to my shakey self .

is they aanything anyone can tell me to help my neuroligist when i see her which will guide her into finding the link between the two. celiac and ataxia.

thanks liz

[FaithInScienceToo]

Hi, All -

I have only read half of the posts here so far...because I began to get tears in my eyes...

I hope all of us find our way out of our mazes.

I know I have much more to learn about championing my own health beyond simply going gluten-free... There is more to know, to truly protect one's health from our sick society's dependence on quick crap food, overcooked foods, too much sugar and alcohol, etc...

Although I have nothing 'informative' to contribute, I just wanted to say...

"Keep on fighting for your health!" - some docs seem so 'removed' - they are the ones who became docs for the prestige, money, and preferred tee-times...

keep finding the good docs, those who will listen, and truly CARE for you, and then list their names here...

...will return to reading the rest of the posts now...great thread. -

Love, Gina

[tiredofdoctors]

Welcome Lizzy -- I think I know the frustration you're feeling with regard to the neurological symptoms. I don't have celiac -- I do have IBS and a host of other autoimmune diseases. The best I can tell you is this: my two neurologists here are considered "out there", etc. They are also the ones who spend hours with me if need be doing my evaluations. They think outside the box. My suggestion: find the "weirdest" neurologist you can find! They seem to be the ones who find the link. If you're close to Louisville, KY I can tell you that Walter Olson, MD, is a neurologist who specializes in movement disorders. He is the first person who said that there was an autoimmune component to my ataxia & tremor. Robert Tillett, MD, is also a neurologist -- I sought a second opinion from him on the advice of my sister. He is the one who insisted on Celiac disease from the beginning. When I was diagnosed negative, he continued to insist that I needed to be gluten-free for the rest of my life. Mary Self, MD, is a fantastic endocrinologist who has had another patient with Gluten Ataxia, and she also insisted that I remain gluten-free. If you're anywhere close, I'd highly recommend all three of these MD's.

[Claire]

hi all

first of all am new here and have spent a lot of time reading through the posts and was quite pleased to know that am not on my own in having neuroligical problems,

i have seen 3 different neuroligist and no one as found a tie between the celiac diease and the ataxia i was doing research on the internet and found a link and email a doctor in england who told me more about the link.

i am seeing yet another neroligist next week and am taking my findings from the internet of the link and seeing if this is what my problem is. some days i feel quite well if i totally dont do anything but when i start moving  like today i feel back to my shakey self .

is they aanything anyone can tell me to help my neuroligist when i see her which will guide her into finding the link between the two. celiac and ataxia.

thanks liz

<{POST_SNAPBACK}>

Hi and welocme. I started this once, went to look for something and when I came back my post had vanished.

Briefly I had said that GPs know a little bit about a lot of things but not much about anything. Specialists tend to look and diagnose within their own field - think neurologists here. It MUST be something they learned in school or saw on rounds. In both instances there is no vision. If the patient does not become advocate for himselfherself the battle may well be lost. In our own interest we must learn - and educate.

Here in this forum you can learn so much and take it to the doctos who may not appreciate the help or may be motivated to look deeper at something they barely scanned before. I have a GP who actually read the folder of info I printed out for her.

Your tingling that you describe sounds like peripheral neuropathy - can be a brain issue or stemming from a B12 deficiency. Most ataxia have essential tremors. Below is an excerpt from an article that you might print out for your doctor. It is very 'professional' so he is less likely to discount it then if it came from a more secular source. website is listed below the piece.

THE NEUROLOGY OF COELIAC DISEASE

In 1966 Cooke published a landmark paper on 16 patients with neurological disorders associated with adult celiac disease.8 This was the first systematic review of the subject after the introduction of diagnostic criteria for celiac disease. Ten of these patients had a severe progressive neuropathy. All patients had gait ataxia and some had limb ataxia. Neuropathological data from postmortem examinations showed extensive perivascular inflammatory changes affecting both the central and peripheral nervous systems. A striking feature was the loss of Purkinje cells with atrophy and gliosis of the cerebellum. All 16 patients had evidence of severe malabsorption as evidenced by anaemia and vitamin deficiencies as well as profound weight loss.

Several case reports followed, primarily based on patients with established celiac disease, often with persisting troublesome gastrointestinal symptoms followed by neurological dysfunction. Data from patients with celiac disease presenting with gastrointestinal symptoms followed up in a gastrointestinal clinic suggest that otherwise unexplained neurological dysfunction is a complication in 6% to 10% of cases.9

A review of all such reports (with biopsy proved celiac disease) from 1964 to date shows that ataxia and peripheral neuropathy are the commonest neurological manifestations seen in patients with established celiac disease (table 1). Less common manifestations include inflammatory myopathies10 and myoclonic ataxia.11 Isolated dementia is uncommon and most cases tend to have additional neurological features (for example, ataxia or neuropathy). Patients with epilepsy associated with occipital calcifications on CT and celiac disease have been described,12 mainly in Italy. Most present with epilepsy in childhood. Such cases are rare in the United Kingdom.

Open Original Shared Link

Celiac can be responsible for your problem. It will be called celiac or gluten ataxia or even autoimmune ataxia.

There is ataxias that is a disease in its' own right - genetic in origin and diagnosed accurately only by genetic testing. I am being tested for this next week at NIH. I do not think it is the right diagnosis but we shall see.

My neurologist recommends all patients with neurological disorders be gluten free - celiac or no celiac. Likewise for autoimmune diseases.

Hope this info helps. Claire

[Nevadan]

All concerned with neurological effects of gluten may want to check out another forum: Open Original Shared Link

Check out their "Gluten File" (second item on their index) for starters.

I find this site an excellent complement to this one. It's more oriented to non-celiac disease gluten sensitivity with lots of neurological info and experience among the members - another great group of helpful folks.

George

[Claire]

Hi Lizzy,

Just came upon this. Thought of you so will add it here. I already sent you one source.

Celiac Disease and Gluten-Associated diseases.

Open Original Shared Link

This is a technical article for doctors. Give your doctor the info and tell him that being a doctor he will have access - or can obtain access - to the site. Make him feel Important - even if he is a dodo. Claire

[FaithInScienceToo]

Celiac Disease and Gluten-Associated diseases.

Open Original Shared Link

This is a technical article for doctors. Give your doctor the info and tell him that being a doctor he will have access - or can obtain access - to the site. Make him feel Important - even if he is a dodo.  Claire

<{POST_SNAPBACK}>

Claire!

I want to add my THANKS for this info and thanks, also, to George for the other forum info!

My Dad has both neuropathy and ataxia, and my gene (DQ8) is most likely from his ethnic heritage. This helps me understand what else I am preventing by being 100% gluten-free!

BTW....

There are more articles listed under the drop-down menu in the "DISPLAY" option field at the top of the page...perhaps some of those are helpful, too?

Gina

[FaithInScienceToo]

Just tagging on what I found while playing around with PubMed...I plugged in "celiac" and "Ataxia" in their search field -

From this particular result (which gave the full article),

Open Original Shared Link

I am copying/pasting part of it:

"The most common clinical presentation is iron-deficiency anemia due to both iron malabsorption and occult gastrointestinal bleeding. celiac disease should be considered in any patient presenting with unexplained iron deficiency anemia, even in the absence of gastrointestinal symptoms. Involvement of the small bowel can lead to water-soluble (B12, folic acid) and fat-soluble (A, D, K, E) vitamin malnutrition and calcium deficiency. Thus patients may go on to develop such symptoms as peripheral neuropathy, osteoporosis, ataxia and coagulopathy."

Not sure it that helps explain anything to anyone, but it helped me a little bit...I am inching along with this stuff...

Thanks, again, Claire, for your great posts...very educational.

I will have to make it a point to look at all of the threads you've been posting in ;-)

GOOD LUCK, Lizzy.

Gina