Gluten Ataxia (only)?

[lizzy]

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

<{POST_SNAPBACK}>

thanks all of you

after spending all of my time on here yesterday doing research i did manage to learn a lot. and claire the web site you sent me to well the doc who wrote most of his findings on celiac diease and ataxia is the one in england i emailed for help and he wrote back and told me to try gluten free untill i could see someone to discuss it, because right now for me to carry on eating gluten would cause me more seizures and convulations. a lot of my symptoms have settled down they havent gone away but dont feel the tingling as violant in side me and that after months is in its self a revalation,

i have to see my new nueroligist next tuesday and i found a good gi doc to go talk to about the celiac diease

i did have a gi doc who earlier this year did an colonscopey on my but it was fine and was given actified for my stomach as it was inflamed in 5 areas.

when i had the c t scan done when i was admitted in the hospital and they told me i had celiac diease i went back to see her and she was moving her practise out of my area and wasnt really too concerend when i gave the d v d of the scan see tried to open it and she said she couldnt and gave me some antibiotics and said take them, she did tell me to came back to see her as she would be gone the following week, i got the impresstion that she was tieing things up and goodbye was my feeling. i didnt get any advice about the gluten at all. so not knowing and i was already going down hill with this neurolical diease i put it on the back burner for awhile . just dealing with the diarrea , then after spending some lenghty time on here i found the link and i have been reading lots of things so i stared the gluten diet myself like you say self help , is what am going to have to do until i get a doc to listen to my findings and i wont give up in the end if all fails i will turn up in sheffield uk to the doc who wrote that stuff and emailed me back. i do have an extra trump in my back pocket becuase am british and i live here in the usa chicago area.

i also went out and bought the gluten-free bible last night again learning about being totally gluten-free and was amazed how people stay away from they own toasters in the kitchen so they wont get contaminated. i was up reading till 2 am , theys so much to learn. so thanks all for your input. i will keep u all informed on my visit next week i have printed off this help and i will take it with me thanks again liz

[tiredofdoctors]

I hope that physicians out there also realize that Gluten sensitivity can cause neurological symptoms without having true celiac disease. When a patient's body produces both anti-gliadin antibodies and anti-perkinje cell antibodies, the two cross-react, destroying the perkinje cells. These are the primary cells in the cerebellum of the brain and in the retinas, producing ataxia, peripheral neuropathy, muscle weakness (beginning proximally), neuromuscular changes (changes within the innervation of the muscles themselves), increased deep tendon reflexes (called hyperreflexia) and retinal changes, causing vision disturbances -- among others. I encourage anyone who has these types of symptoms -- despite the "classic" celiac symptoms, to have these antibodies checked. Celiac disease typically produces these symptoms secondary malabsorption -- and can be reversible, to an extent. Gluten Ataxia -- when the perkinje cells are destroyed, from what I have read and been told by my physicians, is NOT reversible. Stopping it is the only recourse. It is, therefore, extremely important to begin a gluten-free lifestyle as soon as the diagnosis is confirmed.

[FaithInScienceToo]

i was up reading till 2 am , theys so much to learn. so thanks all for your input. i will keep u all informed on my visit next week i have printed off this help and i will take it with me thanks again liz

<{POST_SNAPBACK}>

Glad that you are learning from us and the Net, & books - there IS a lot to learn...but, be sure to get regular sleep, too ;=)

Some of us will be 'tracking' this thread now, Lizzy, so be sure to pull it back up and use the 'add reply' button at the end of it when you get more tests results, etc...to keep us up-dated on your progress out of 'your maze' and back into the light of increased wellness!

Best wishes,

Gina

PS - I am now going to check out all of Claires posts to educate myself more, too.

[Claire]

More info for Lizzy and, of course, for others who are interested)

Excerpt:

Gluten Sensitivity

It has long been accepted that neurological disease can result as a complication of celiac disease, due to nutritional deficiency caused by malabsorption.

What is NEW information is that neurological and neuromuscular disease may also be associated with a non-celiac gluten sensitivity, and may involve a direct immunological assault of brain, nerve, and muscle tissue.

This can occur without any signs of intestinal damage, which is the cornerstone for a diagnosis of celiac disease. Sometimes, intestinal disease will follow several years later. It is possible that neurological disease is the sole manifestation of gluten sensitivity.

For diagnostic purposes, Dr. Marios Hadjivassiliou, a leader in the field of gluten related neurological disease, suggests positive antigliadin antibodies, in conjunction with a HLA marker of DQ2, DQ8, or DQ1 as an indicator of gluten related neurological disease. He will recommend a strict gluten free diet in these cases.

The research regarding gluten sensitivity outside of celiac disease is ongoing, and therefore your doctor's may be hesitant to acknowledge it. In fact, they may not even know about it.

Open Original Shared Link

Both Dr. Fine, a leading celiac disease researcher, and Dr. Hadjivassiliou have identified the DQ1 marker as predisposing one to a non-celiac gluten sensitivity...which can include all the same symptoms and risks as celiac disease, except there will usually not be villous atrophy on biopsy which is required for a celiac diagnosis. (Dr. Fine suggests DQ1 may be seen in 1-2% of biopsy proven celiac disease.)

Doctors need to know these things. If they came out of medical school in last 30 years they probably won't know these things. Few GPs read medical journals. Specialists tend to read in their own field which narrows their vision considerably. We all can help educate where education is missing. Some won't like it, of course. But others will receive and consider it. The more scientific it is the more likely they are to pay attention. Unfortunately the website name for the source of above material sounds like a bakery! Claire

[FaithInScienceToo]

Hastypastry?

Good one.

THANKS, CLAIRE!

You rock! Gina

[lizzy]

Hastypastry?

Good one.

THANKS, CLAIRE!

You rock! Gina

<{POST_SNAPBACK}>

thanks claire too for your help i did read all that doctor marios wrote and i did print off his pieces to take with me next week .

when i first started being really sick was too years ago i lost 40lb in weight in less than 3 months i have been seen by loads of doctors who couldnt find out what was the reason for this , yet celiac is well known but not once ever mentioned to me or tested for gluten which surprisers me. but after reading some of the g f bible last night and some other symptoms then i remembered back to being a girl and haveing dermtitus and never being a fully well person and diarrea as always been with me but it never accured to me that maybe for all these years somewhere in my body i have had this problem and since i turned 40 things stared to take a downward spirell for me. my hubby told me life began at 40 well not for me it went the other way i am hoping that i have found the link and stop anymore damage to my body. i may not be able to mend what as been affected already but i guess i will have to live with that. my husband wants me to be healthy so we can go on enjoying a full life which over the last 6 months i have gone from a very active person to one who sits reading all day because anything more phyisical then that would send me into seizures and convultion. so right now after 2 weeks of being gluten free i feel like a allmost new person and want to get out of the house where as before the thought would just terrifie me.

thanks all again liz

[Nevadan]

What a thread! Is this a record? There's sure a lot of info here for those of us with neurological concerns.

To elaborate on my previous suggestion of the BrainTalk forum, in spite of their cutsy "hastypastry" web address, there is a lot of info there but the site navigation is not as easy as this one. If you go to Open Original Shared Link ? you will get their main index. (My previous link posted was only for the Gluten related subforum.) On this link scroll down about 1/4 way down the page and you will find other forums listed alphabetically for specific neurological diseases, some of them with thousands of threads. Again I find this site a very good complement to Celiac.com - all worthwhile info is good in my book.

Hope this helps.

George

[Claire]

What a thread!  Is this a record?  There's sure a lot of info here for those of us with neurological concerns.

To elaborate on my previous suggestion of the BrainTalk forum, in spite of their cutsy "hastypastry" web address, there is a lot of info there but the site navigation is not as easy as this one.  If you go to Open Original Shared Link ? you will get their main index.  (My previous link posted was only for the Gluten related subforum.)  On this link scroll down about 1/4 way down the page and you will find other forums listed alphabetically for specific neurological diseases, some of them with thousands of threads.  Again I find this site a very good complement to Celiac.com - all worthwhile info is good in my book.

Hope this helps.

George

<{POST_SNAPBACK}>

Every new bit of information helps. Thanks so much.

I too am pleased with the thread. I think there are many people with celiac disease who don't realize the neurological implications. So many have serious GI stuff going on and have not experienced this other potentially disabling aspect of celiac disease. On the other hand there are so many people with neurological conditions who don't know about celiac disease or about the gluten connection to neuro problems - with or without celiac disease.

I have a dodo family doctor that I am educating She told me today that the material I had given her on the neuro implications of celiac disease was totally new to her. She knew only to look for the intestinal damage - if that wasn't there - no celiac disease. She is, I think, quite amazed. At least she isn't laughing. Claire

[Guest BellyTimber]

Am 50.

From earliest memory: bad balance, couldn't see in dark. Obvious malabsorption missed by all - emaciation with obvious muscular impact. Can't cope with heights. Always susceptible to noise.

In last 17 years: viral encephalitis, migraines, hypoglycaemia. Exploration of stimulant issues e.g caffeine. At one point, self-devised multivitamin therapy improved my stamina loads. Examination found "atrophied cerebellum".

In last 5 years: poor vision of depth, distance, motion, quantity. Numbness (recently improved somewhat). Tremor increasing. Drowsiness, dizziness. Have given up driving.

gluten-free-WF (as best I can) following worsening of GI symptoms almost 3 yrs ago.

Recent examinations & diagnoses:

- Asperger syndrome.

- Dyspraxia.

- Strange reading style - I circle the page several times then look at the next one when I'm fed up with that one. Like many dyslexic people I have contrast issues but usually want more not less as most of those do.

- One-hundredth the quantity of light sensing cells at the back of my eyes that some people have, considered to be at lower end of normal band. Ten times as many such cells is the average, one hundred times as many is top end of normal band. In themselves are deemed healthy! Simply that each does more work.

Unfortunately with above listed "assessments", no practical recommendations came, to assist me and other practitioners to piece together the best management strategies.

- Some anti-gluten antibodies. The standard panel was not ordered and I was not sent for biopsy. Gluten challenge is now considered dangerous for me. Am excluded from prescription foods.

Try pursuing a gluten-free caffeine free lifestyle in this society without a car - the logistics need a lot of advance planning!

The plusses - have always found it difficult to assume therefore have taught myself to piece together issues for myself. Thanks all for the info posted here, it will take me some time to assimilate but my heart is full, knowing someone knows (with variations). Am better with words than at communicating (esp oral).

[Matilda]

..

[FaithInScienceToo]

Thanks all for the info posted here, it will take me some time to assimilate but my heart is full, knowing someone knows (with variations).  Am better with words than at communicating (esp oral).

<{POST_SNAPBACK}>

Glad that you, too, are finding this thread to be useful ...it's just invaluable to get to hear from so many people - to learn about the true extent of how gluten has poisoned each of us... and to be able to share knowledge, and emotions.

We are all very lucky that technology (the Net) can help us help ourselves, and each other.

Best wishes,

Gina

[FaithInScienceToo]

I'm loath to butt in with my minor concerns, but I wonder if any of you can advise me.

Do standard eye tests pick up gluten-type problems?

Thanks,

Matilda

<{POST_SNAPBACK}>

First, butt in anytime around here...one never knows when a symptom you have may be one others have already researched...or are also worried about...and therefore needs researching...

Unfortunately, I don't know anything about this...nor do I have this symptom, even though I am 48 - I do wear glassses, though - trifocals - and have been in them since before age 40. I have worn glasses all of my life - farsightedness and astigmatism from birth.

My only thought - if it is NOT a biochemical thing, maybe your eyes are more puffy in the morning as you age (as mine are), and so the muscles in your eyes aren't able to focus as well as they are later in the day, after the puffiness clears?

That was just 'a wild guess' ... you may want to chart puffiness and focusing...rate yourself for both and see if there is any pattern?

Anyway...

Have you "Googled" for any related info?

Perhaps plugging in the words "focus" and "morning" to start with?

And, maybe "gluten" and "eyes", and "Gluten" and "focusing" ?

Let us know if you find anything that might help explain it! I hope that, if you do find info on-line or from your doc, it will put your mind at ease.

Gina

[Carriefaith]

The neurologists, however, still insist that because my antigliadin antibodies are so elevated, that gluten is destroying my cerebellum.

I'm sorry to hear that this is happening to you. I would maintain the gluten-free diet 100%...

[Claire]

Am 50.

From earliest memory: bad balance, couldn't see in dark.  Obvious malabsorption missed by all - emaciation with obvious muscular impact.  Can't cope with heights.  Always susceptible to noise.

In last 17 years: viral encephalitis, migraines, hypoglycaemia.  Exploration of stimulant issues e.g caffeine.  At one point, self-devised multivitamin therapy improved my stamina loads.  Examination found "atrophied cerebellum".

In last 5 years: poor vision of depth, distance, motion, quantity.  Numbness (recently improved somewhat).  Tremor increasing.  Drowsiness, dizziness.  Have given up driving.

gluten-free-WF (as best I can) following worsening of GI symptoms almost 3 yrs ago.

Recent examinations & diagnoses:

- Asperger syndrome.

- Dyspraxia.

- Strange reading style - I circle the page several times then look at the next one when I'm fed up with that one.  Like many dyslexic people I have contrast issues but usually want more not less as most of those do.

- One-hundredth the quantity of light sensing cells at the back of my eyes that some people have, considered to be at lower end of normal band.  Ten times as many such cells is the average, one hundred times as many is top end of normal band.  In themselves are deemed healthy!  Simply that each does more work.

Unfortunately with above listed "assessments", no practical recommendations came, to assist me and other practitioners to piece together the best management strategies.

- Some anti-gluten antibodies.  The standard panel was not ordered and I was not sent for biopsy.  Gluten challenge is now considered dangerous for me.  Am excluded from prescription foods.

Try pursuing a gluten-free caffeine free lifestyle in this society without a car - the logistics need a lot of advance planning!

The plusses - have always found it difficult to assume therefore have taught myself to piece together issues for myself.  Thanks all for the info posted here, it will take me some time to assimilate but my heart is full, knowing someone knows (with variations).  Am better with words than at communicating (esp oral).

<{POST_SNAPBACK}>

You can check out Entrolab - they do a stool sample test for celiac - no gluten challenge necessary. Absolutely don't do the gluten challenge - not worth risking even more damaage.

[Claire]

I'm thinking that my vision might still be getting worse though. I'm about the age when lots of people start to need glasses so it might just be that. I'm worried because it comes and goes. Sometimes, especially in the mornings, everything is very blurred, other times it's fine. I'm going to get my eyes tested. Do standard eye tests pick up gluten-type problems?

Thanks,

Matilda

<{POST_SNAPBACK}>

Hi - there. To this question: I do not think so UNLESS you suggest possible celiac. Then they will look closely for cicades changes and nystagmus. I have serious eye problems caused by a negligent surgeon so my vision gets intensive scrutiny yet changes in cicades and end point nystagmus was not picked up until observed by a neurologist. Both of these conditions are related to cerebellar damage. Be proactive in your own behalf. Pose the questions and don't rely on the doctors- even the good ones - to catch everything. Claire

[tiredofdoctors]

Butting In?????? No Way!! We're all in the learning curve! From what I've learned from my MD's standard tests may not pick up on retinal changes from Anti-Gliadin antibodies. An Electroretinogram, and two other tests (I had them done, but don't know what they are -- sorry) can tell if there are retinal changes. I have started developing night vision -- quickly and significantly. Because the retinas are comprised of a proportionately large number of perkinje cells, antigliadin antibodies can cause them to degenerate (and they do not regenerate). Stay gluten-free!! If I can find the website where I read more, I'll post it. Take care

[Claire]

Glad to hear another voice for gluten-free - not just a little bit gluten free. It must be a total withdrawal from this poison. It is that you know - for those whose are sensitive to it. Those numbers will continue to grow as technology messes with the basic nature of foods and as we move to a diet that is saturated with gluten modified products. By that I mean that grains have a much higher gluten content than nature intended. Claire

[tiredofdoctors]

I think the thing that scares me the most is that many, many products contain gluten which is hidden under different terms. "Natural Flavors" "Hydrolyzed Vegetable Protein" "Maltodextrin" all can contain gluten. I am to the point that I make all my sauces, rubs, etc. My husband said that this weekend we are going to search the net for on-line gluten-free products. I agree, though -- Gluten-Free is all or nothing. It's like being a little bit pregnant. You either decide not to poison yourself and continue with the consequences, or remove the poisoning agent completely out of your life. My husband came home three days ago with my FAVORITE doughnuts, and a 6-pack of our favorite beer amongst our groceries. My mouth actually watered! I weighed the consequences -- more destruction of my brain and nervous system, and didn't even touch the box!

[Claire]

I think the thing that scares me the most is that many, many products contain gluten which is hidden under different terms.  "Natural Flavors" "Hydrolyzed Vegetable Protein" "Maltodextrin" all can contain gluten.  I am to the point that I make all my sauces, rubs, etc.  My husband said that this weekend we are going to search the net for on-line gluten-free products.  I agree, though -- Gluten-Free is all or nothing.  It's like being a little bit pregnant.  You either decide not to poison yourself and continue with the consequences, or remove the poisoning agent completely out of your life.  My husband came home three days ago with my FAVORITE doughnuts, and a 6-pack of our favorite beer amongst our groceries.  My mouth actually watered!  I weighed the consequences -- more destruction of my brain and nervous system, and didn't even touch the box!

<{POST_SNAPBACK}>

So true. That stuff is everywhere!

I think you will find, as time goes on, that the temptation diminishes. If you give in to the temptation you may find that the forbidden food doesn't taste nearly as good as you anticipated. It is like being on a restricted salt diet. You get something that is salty and it tastes terrible! - not at all like the wonderful flavor you remember. I have found that many foods surrendered a long time ago no longer have the same appeal - excepting, of course, a really good scone or a dip of grapenut ice cream from our local dairy. Claire

[lizzy]

hi all

just wanted to let you all know i have seen my neuroligist today explianed to her about the celiac and the gluten and siad that even though i still have the tingling and tremor that i do feel better ( ALTHOUGH ON FRIDAY I TOOK SOME TYLENOL ARTHRITUS AND BANG SPENT FRIDAY NIGHT HAVING SEIZURES LATER FOUND OUT THEY CONTAIN GLUTEN) Anyway she examined me but to her which i found her attitude to be rude she just said she cant find any move ment disorder and said go see a gi doc. thats was it ! no concerns about the tingling the fact i have been having seizures since june nothing i felt it a waste of my time. weather i had upset her cos i told her about the link i dont know she never once smiled at me .made me feel like i was wasiting her time, so i am back to self diagnosing. seen as shes not interested all she could say was stay away from gluten , if things dont get better come back in 3 months,

so am waiting on seeing the gi doc at the end of nov and i will have to be very strict( which i have been) on the gluten . after a taste of what happened on friday after three weeks of being seizure free i was upset to say the least. liz

[FaithInScienceToo]

Hi, Lizzy,

Thanks for the update.

I am sorry that your doc was rude. Obviously, she must be one of those docs who are NOT in 'the doctoring biz' to be loving...

Please try to see a GOOD GI, if you have a choice of docs - If you can choose, perhaps you can post here, ON A NEW THREAD, asking if anyone knows of a good GI doc in your area? There is also a page on here (celiac.com) with info about docs - see the site index....

If you post about it, though, remember to put your city, etc in the subject line, and that you need a GOOD GI doc.

Be careful before you put ANYTHING in your mouth...

I know, easier said than done...

Love,

Gina

[tiredofdoctors]

Hi Lizzy -- Don't feel badly. My two neurologists here swore to me that I had Gluten Ataxia, and both insisted that I needed to be Gluten-Free. They both told me that my body was destroying my brain and retinal cells because of the anti-gliadin antibodies.

At the time, I could not accept the possibility that Gluten could cause the problems I was having. I went to Johns Hopkins and Mayo, only to have the doctors roll their eyes at me, diagnose me with conversion syndrome (psychiatric), actually document incorrect -- and in two cases flagrant fraudulent findings -- saying they did the tests and that blah blah blah. I confronted one MD at a follow-up, told him that I am a PT, know what the test is and actually perform it on my patients. I also told him that it wasn't performed on me. I also told him of the standards for which some of the results were given, and that the results were not documented correctly. There was a lot of scrambling for an answer, and he said that my chart would be "revised with an addendum". The Psychiatrist who evaluated me even told the Neurologist that it wasn't conversion syndrome, and that it wasn't brought on by severe stress. Still, the neurologist's final diagnosis was "Conversion syndrome" -- his recommendation -- psychiatric help.

Since my spasticity is reducing since being Gluten-Free, I can only guess that my little "hometown, rinky-dink neurologists" were right -- unlike the "Big Time Heavy Hitters" at Hopkins and Mayo.

My opinion of physicians -- particularly neurologists -- is extremely low. There was a time when men and women chose medicine in order to be practitioners of the healing arts. Now, with the exception of a few pearls, it is purely about greed, ego, and the pursuit of being worshipped as a G-d. The bottom line is -- most physicians do not want informed patients. They regard the internet as a source of trouble for them, and more often than not dismiss anything you present from the internet or any forum as "misinformation". Informed patients make their job more difficult. You do not see them as G-d-like, and you do not blindly accept that what they're telling you is accurate. They are then forced to back up what they said with fact. They don't like that very much.

Sorry for the rant, but I am so frustrated with hearing stories like yours. Keep your chin up, FIND ANOTHER DOCTOR, and stay with what works. Healthcare is a consumer's market -- doctors are a dime a dozen. Good ones -- well, that's another story. . . .

[lizzy]

hi all

tiredofdoc... i totaly agree with everyting you said this was my 4th neuroligist i keep getting referred to a new one by them cos they cant find why i wouds have all this tingling and seizures. without it being something in a text book they learnt, about. i also find it disturbing when these doctors are in they 20s and no experiance i prefer to seek out older doctors who have got knowledge under they belts and have learnt through the years that they is some unexplanation for what happens to each of us we are all different , drugs are different in each of us so why arnt the symptoms,

i saw one neuroligist who told me that seizure where only for pepole who have eperlepsy and i couldnt call mine that just spasms, apparantly to her if i didnt lose total unconsuness and pee myself then it wasnt classed as seizure, yet i have read tons of storys on peole with partial seizures convulations ect ect . when i told one doctor i had spasams she didnt have a clue what i was talking about then when she preformed an e. m .g on me i had seiziure apon seizure. she asked me when it was over are these what you call spasams, i said yes why ?she was shocked and said no these are violant seizures. so each doctor has they own oppinon. today am going to research yet another nueroligist one that knows about the two celiac and nueoligical problems and go talk to them as . as yesterday was a total waste of my 40 dollar co pay. liz

[tiredofdoctors]

I don't know what your seizures are like, so I'm not at ALL saying that my experience is like yours! I can tell you, though, that I have "spasticity" in my legs and feet -- it happens when I over-exert. One doctor called it "spasms" -- but my doctors here have seen it in motion. Once it kicks in, you can't move my legs until I take medication and wait 20 minutes. My brother-in-law is a physical therapy assistant, and was at my mom's house when it happened. He is a REALLY strong guy -- he couldn't move my feet & ankles into a normal position at all. At one point, he said he was afraid he was going to break a bone trying, so he stopped. So far, after 3 1/2 weeks gluten-free, it appears that the spasticity is lessening somewhat. Good luck with this next MD -- keep us "posted"

[lizzy]

hi all

i just wanted to know if any of you have had any simular problems like me to vitamins, i have been taking a muti vit with no side effects , and after reading on here about taking extra b 12 and calcium and magnisium i went out and bought some, on thursday i took the extra calcuim and mag and i felt like all my nerve endings where prickly and like someone was sticking pins into right where all my nerve endings are. so i went without over the weekend then last night i took a b12 vitamin and again today i feel like am having a reaction to it prickly feeling at the end of my nerves as anyone else felt this liz