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Sophiekins

Celiac Disease: Not Just A Gi Problem

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OH that was a fabulous post!!! I just can't help but wonder if the reason there are so many undiagnosed celiacs is because the medical community is ignoring a real majority of symptoms. I too am of the 2nd and 3rd variety. I never had GI issues until I went gluten-free and then only with accidental glutening and that is only sometimes. Thank you for taking the time to express this so well.

Edit: I just remembered something. If anyone watches House but there was an episode last season where the patient had celiac. It was the one time I've a) seen the disease portrayed on a current tv show and B) the patient did NOT have "classic" celiac symptoms.

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Sophiekins--

Fabulously put! Thanks!

I personally never had any symptoms of celiac disease...I have another auto-immune disorder that went bonkers...diabetes... and they tested me and now celiac disease is added to the list of disorders.

My daughter was diagnosed with autism when she was 15 months old. Needless to say when I was diagnosed with celiac disease we had her tested. Come to find out her "autism" was mostly celiac based. With a gluten free diet she has improved her gross motor skills, fine motor skills, she's finally starting to talk...at the age of 5.5 years. We are still struggleing with the National Health Department with having her diagnosis changed from autism to celiac disease, because just like the typical doctor they don't see celiac disease as effecting the neurological system. :angry:

Thanks so much for this...now maybe I'll have something to refer doctor and lawyers to to base my argument on. :D

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You might want to check these out:

www.bmj.com/cgi/content/full/318/7200/1710

http://brain.oxfordjournals.org/cgi/content/full/126/3/685

http://pmj.bmj.com/cgi/content/full/78/921/393

http://rheumatology.oxfordjournals.org/cgi...nt/full/41/1/31

http://www.spherios.com/autoimmune.html

http://www.csaceliacs.org/library/neurocomp.php

http://www.paleodiet.com/ms/MSCordain.txt --- THIS ONE WAS IN 1999, folks. They knew it back then, but the doctors who were verbal about it were labeled as "quacks". Who's quacking now?????????

Sorry to give you so many, but I'm just so OUTRAGED by the physicians who tried to diagnose me with "conversion disorder" . . . . DESPITE having evaluations by 2 Psychiatrists, a Licensed Clinical Social Worker and 2 Psychologists that were to the contrary . . . and I had them done JUST BECAUSE I believed that these doctors were right! Here I have 5 Mental Health professionals saying, "No, it's not conversion disorder and it is NOT in your head." And yet, I still had one doctor (at Mayo Clinic) send the final summary as Conversion Disorder to my PCP. AND GET THIS - When I got my medical records, the Psychiatrist I saw there who said that I DIDN'T have conversion disorder -- his evaluation and summary were not included. I called him to ask about it -- he couldn't find it on their electronic documentation system. THEY HAD BEEN DELETED. He was LIVID. He wrote a letter directly to me, saying that it is NOT conversion disorder, and asked me to copy it and give it to my MD's.

Sorry about the rant -- got a little off on a tangent there . . . . .

Happy reading!

Love & Hugs, (trying to get back to the warm fuzzy kitten thoughts)

Lynne

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Hello everyone, I just had to jump in here because of the last few posts talking about lazy eye. Also I'm hoping this thread catches the attention of any medical researchers checking out the forum. The more we chime in with our myriad symptoms, the more likely it is that this complicated disorder will be exposed for what it really is - ie a multi-systemic, autoimmune condition provoked by the ingestion of gluten in sensitive individuals, not necessarily characterised by major intestinal damage, nor showing high BLOOD levels of anti-gliadin antibody (try and find an acronym for that!).

Ah, lazy eye - I was born with it too (charmingly called a 'squint' here). Mine was corrected with exercises but not surgery. So my right eye would always wander from time to time, especially when tired, and never 'learned' to synchronise with the other one. It never focussed properly so that, with my left eye shut, I could only barely read larger print. I've been gluten free for seven months now and have recovered so much of my youthful functioning it's much too long a list to go into in this post. But neuro symptoms were, and always have been, way out in the lead for me. Mostly anxiety (restless mind syndrome), but also post-natal depression, and a generally cynical, dark view of life since I was very young. It's ALL GONE. I can hardly believe it myself. I go around singing these days and I have found my inner 'nice person' which I had long despaired of even possessing (although I did a very good imitation of a chilled out person, I was anything but).

Anyway back to the eye. When I read those posts this morning I wondered whether the lazy eye might be the 101st improvement to be added to my list. So I closed my left eye and OH MY GOODNESS, I could read almost as well with the lazy eye. At first I could hardly believe it, thinking this is one heck of a psychosomatic effect. But I am now typing this keeping only my right eye open and yes it is true - my right eye is functioning near-normally.

I thought I was getting past the sense of amazement that's accompanied me for the past seven months as I've checked off one symptom after another but this one has to be the most thrilling - perhaps because it was my earliest. As someone mentioned a few posts back, not having an earlier diagnosis has been such a waste. Whereas pre-gluten-free, that thought might have sent me spinning into a gloomy place, now it's instantly replaced by a stronger one: ' YES, I HAVE MY LIFE BACK AT LAST'.

Love to all, particularly those still in a difficult stage of recovery.

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HOLY COW!

I had the vertigo thing once & the Doc gave me meds. That did help & it was the only time i had it. But the pins & needles, tingling fingers I had NO idea that's what it was!

Still pushing my family to get tested or at least try the diet as so many things described here fit them! But of course they won't no matter how often I tell them it's hereditary. 1 Niece tried gluten-free diet for a week & even called & said she felt better but went off it pretty quick...I so don't get that!

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Guest nini

my dad has a lazy eye too, but didn't have surgery to correct it... that's what I thought was unusual, finding someone else who'd had surgery for lazy eye... but wow, to realize that lazy eye may actually be another piece of the weird puzzle that is celiac???!!!! wild.

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This lazy eye connection is interesting--I didn't have it, but my younger sister did. They had her do exercises for it. Of everyone in the family, she is the one I would suspect Celiac in the least--she has never exhibited any classic symptoms. (Of course, that dosen't mean she couldn't have silent Celiac--)

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Add me to the "lazy eye" list--the doctors couldn't seem to agree if it was strabismus or ambliyopia, but either way, I've never been able to properly see 3-D. I flunked the exercises, and did not want surgery--somehow, the idea of letting anyone near my eye with a sharp instrument was not appealing.

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Hi all, shortly after posting about lazy eye earlier this am I remembered something. My symptoms also fit another 'syndrome' called hypermobility syndrome. I have never considered it before but the lazy eye was obviously part of all that. Like I say I'd had it from birth and had adjusted to it so it didn't come to mind until I read the earler posts. Also, in respect of HMS, I'd been too busy focussing on the pain and frequent dislocations in my knees, hips, ankles, jaw etc etc (all gone since gluten-free diet). HMS is a connective tissue disorder, basically the webbing that holds all your bits together are weak and flabby because they lack the collagen protein to strengthen them. It also seems to be accompanied by mood and sleep disorders and by fatigue (hardly surprising). And some on the HMS board are improving on gluten-free diet. Maybe gluten attacks collagen as well as all the rest or maybe the two co-exist in the same genetic types.

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WOW!

I had some years in my life where I had such bad phobias with panic attacks that I couldn't work, and it took a couple of years of struggling each time to get it back under control.

I also had unexplained vertigo several times, when I couldn't even walk or find the door knobs to open them, etc. It's been almost daily with me that whenever I lie down the room spins...I just thought that was just normal...come to think of it...that hasn't happened to me for a while now, though...I hadn't even noticed!

I used to have numb and tingling spots of my toes and fingers too...haven't thought about that for a while now, either.

I've been clumsy my whole life too...have broken many nice things. Now I'm trying to think of how long it's been since I broke something!!!

Anyway, I'm wondering if all of these things, plus having to get all my teeth (except for 5) crowned several years ago because of what dentists called "enamal erosion," have all been gluten sneaking up on me before it finally made itself known with intestinal symptoms!

Gosh it makes you wonder if ANYBODY is really safe eating it!

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Incredibly interesting!

My mom has a lazy eye. She's also the one who suffers from diverticulitis and it is my grandfather on my mom's side who I am sure the celiac came from. The end of this month, she goes for her follow-up to the GI who treated her in the hospital for the diverticulitis and I am going with her - I am going to request he do a celiac panel on her.......

Karen

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I have the "calcification" deposits on the frontal lobe. It was after I had meningitis that it was found.

You explained and described Celiac Disease perfectly. If you do get the time send your description to the nearest support group, and Nini's newbie starter kit. If we are trying to get the word out about celiac disease we had better get the whole truth out.

The Celiac house episode is going to be shown again - I just saw the commercial.

L.

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Wow! What an amazing amount of info on here. Sophie- that post was EXCEPTIONAL!!!!!!

I often wonder (no family history to fall back on as I was adopted) if my first bout with severe depression and anxiety in 1989 was gluten related as were my other two episodes. I have always been clumsy (you should see me when I'm glutened- I'm a flippin train wreck- my husban says I look like I'm on drugs). The problem with the neurological manifestations of celiac is that unlike the gut, sometimes the damage IS irreversible. I know with depression, after one episode you have a 33% chance of having another, a 66% chance after a second episode and after a third episode (I've had 3) you might as well pencil your 4th episode in your date book.

My psychiatrist and therapist were ALWAYS the ones saying that they had NEVER seen a more clear cut case of biological, chemical depression.

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I've been printing out all the articles linked in this thread, and one in particular was a real light-bulb experience.

http://www.spherios.com/autoimmune.html

This short article is about Sjogren's disease (the glands that produce lubricating secretions - eyes, mouth, vagina - become escessivly dry).

I'm reading the list of signs/symptoms and I recognize 4 out of 5 in myself - although, not severe, but I've been plagued with dry itchy eyes for years with a "sensation of a foreign body under the eye".

Now that I think about it, my eyes haven't been itching much lately except last week when I had mild glutening symptoms my eyes felt like something were in them again.

The article says that although researchers don't know the exact cause of Sjogren's, they do know it's an autoimmune disease and that wheat protein seems to be one of the triggers.

WOW - This thread has been a real eye-opener!!! I also have word-finding difficulties and have been mildly clumsy, even a few mild episodes of unexplained dizziness.

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I'm not sure where to put this (so moderators please move it if you think it belongs elsewhere!), but I think this is getting ignored by both the celiac community and our doctors on a regular basis, so I just had to say it.

Celiac disease has been in the news quite a lot lately, and while this is a good thing in general, I worry when I hear people (both celiacs and doctors) explaining celiac disease in a way that is misleading or just plain wrong. I've said it before, and I'll say it again (probably a thousand thousand times): Celiac disease is not a gastrointestinal disorder. Celiac disease is a systemic auto-immune disease. What brought this to the boiling point was a recent discussion with my newest doctor (I moved postcodes, and had to acquire a new physician. . .damn) about celiac disease. Like most GPs, my new doctor doesn't know much about celiac disease (he admits "we studied celiac disease in med school for about five minutes"), but he's relatively open minded and wants to learn what he can. So we talked.

I said: "Celiac disease is an auto-immune disease in which the presence of gluten in the body causes systemic immune responses that manifest in each patient in diverse and potentially changeable ways. The most common manifestation is a gastrointestinal response - so-called 'classic' celiac disease - characterised by diarrhea, malnutrition, vomiting, weight-loss and lethargy. A second common manifestation is in dermatitis herpetiformis, lesions in the skin, frequently on elbows and knees in a circular pattern, but also relatively common on arms, legs, face, scalp and torso. The most definitive diagnostic symptoms of DH are therefore symmetricality and improvement on a gluten free diet, with positive biopsy where possible. A third subset of celiacs may present with one symptom or an inconclusive cluster of symptoms, so-called 'silent' celiac disease. In keeping with the systemic nature of the disease, celiac disease may also manifest in other organs, including the liver, kidneys, gall bladder, and brain."

"Hang on," he said. "Celiac disease can affect the brain?"

"Yes," I said. "A number of studies done since the 1970s suggest that gluten antibodies may cross the blood-brain barrier to form lesions (usually calciferous lesions similar to those found in alzheimers or parkinsons patients) in the brain. These lesions usually resolve, for the most part, on adoption of a strict gluten free diet. The evidence for neurological effects of celiac disease are supported by the experiences of many celiacs who report symptoms such as depression, migraine, or mood swings that would suggest the involvement of the brain. Other celiac patients present with specifically neurological symptoms such as ataxia, poor motor-coordination, neuropathy, vertigo, loss of sensation, epilepsy, speech problems and memory loss, but without significant symptoms that would otherwise lead to a traditional neurological diagnosis.This has led to the adoption of the term 'neurological celiac disease' to describe patients with significant neurological responses to the presence of gluten who may or may not experience (severe) gastrointestinal symptoms."

Most of you will probably recognise yourselves in the first part of the above discussion, but some of you will recognise yourselves primarily in the last part of the discussion: you hear 'ataxia' and remember stumbling and staggering through life as if you were drunk, clinging to handrails and walls and occasionally wiping out in the midst of crossing busy intersections, while 'neuropathy' conjures up the thousands of times you've sat at your desk shaking your hands and feet like a compulsive freak in a desperate attempt to make the pins and needles go away. You may remember the horrible feeling of searching desperately for the word you used to know and loved to use, and stuttering out an inadequate alternative because the silence has stretched too far. Or maybe you remember feeling the world spin underneath you when you lay down, or that funny disconnected feeling that made moving your body feel like trying to drive a car made of jello. Maybe, like me, you played thousands of hours of catch and never once caught the ball. And you can probably remember the day you felt, for the first time in years, like you truly inhabited your body - the day you made it to the bathroom at the end of the hall without tripping over your feet or walking into a wall, or the day you caught the keys somebody tossed to you, or maybe it was the day you crawled into bed and didn't feel the world spinning. The day you realised that all of your stuttering and stumbling and spinning had a cause: gluten. That was a magical day (although I must admit I do miss feeling the world spin. . .I rather liked that. . . :P ).

On the whole, I think we've done pretty well as celiacs in educating our doctors, nurses, anesthesiologists, dentists, family and friends on what it means to be a celiac - in some places, the tests for celiac disease are now ordered as a matter of course when diagnosing digestive difficulties. But just as researchers are still studying celiac disease and coming up with new information, we need to keep educating. What I'm asking is that we start to mention neurological celiac disease to our doctors and nurses and dentists and family and friends when we talk about celiac disease, because our brains are not as resilient as our digestive systems. We all know how hard the diet is, but I know of one little boy who will not only have to cope with a gluten free diet, but will always need a walker to get around, and will suffer from severe mental disabilities all his life because it took four years worth of doctors - and thousands of tests - to realise that he had neurological celiac disease.

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Hi all, shortly after posting about lazy eye earlier this am I remembered something. My symptoms also fit another 'syndrome' called hypermobility syndrome. I have never considered it before but the lazy eye was obviously part of all that. Like I say I'd had it from birth and had adjusted to it so it didn't come to mind until I read the earler posts. Also, in respect of HMS, I'd been too busy focussing on the pain and frequent dislocations in my knees, hips, ankles, jaw etc etc (all gone since gluten-free diet). HMS is a connective tissue disorder, basically the webbing that holds all your bits together are weak and flabby because they lack the collagen protein to strengthen them. It also seems to be accompanied by mood and sleep disorders and by fatigue (hardly surprising). And some on the HMS board are improving on gluten-free diet. Maybe gluten attacks collagen as well as all the rest or maybe the two co-exist in the same genetic types.

Wow that's interesting. I've always had this and I don't know to much about it. I get out of joint very easily and I'm hyper mobil. Where are the HMS boards? I'd love to know more about this. I'm better on gluten free but I also get relief if I stay away from nightshades. My neck is sore today because I've been handling gluten for two days trying to please everyone with this thanksgiving meal. Its been the hardest holiday yet to handle.

Thanks to the person who started thread. Its been great.

Gail

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just today at the thanksgiving dinner table my uncle-in-law asked if i ever would outgrow this allergy. It was great- I explained to him that it's a hereditary autoimmune disorder, not an allergy and that it can have 3 manifestations- GI, skin and neurological. My UIL (new word? :P ) asked me if I only had GI symptoms and I told him both GI and neurological.

I also had another eye opener today while talking to a friend with gluten ataxia. She became so constipated that she had to have the impacted stuff removed and it was due to her autonomic nervous system, damaged due to gluten, failing to signal her bowel muscles to move. I wonder if the reason some people struggle with constipation agter going gluten-free is actually a GI manifestation of a neuro problem?

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Wow again.

So many people, so few symptoms!

I'm afraid I've only got one new link for you guys - though plenty of stuff will come up if you google neurological celiac disease, it all gets awfully technical awfully fast. . .I'm working my way through it all SLOWLY (I never took biology, so I'm learning the medical stuff as I go) - but the most knowledgeable people on the issue hang out at this link:

http://brain.hastypastry.net/forums/forumd...&order=desc

including the mom of the little boy I wrote about in the original post. The expert on the subject is Dr. Hadjivassiliou (known to most neurological celiac disease sufferers as Dr. H. . .I have yet to meet someone who can actually pronounce his name), a British neurologist (there is a list of his published articles on the hastypastry link above - click under 'Useful Websites'), but I believe there is also a neurologist in Chicago (sorry! I don't remember where) who has been working with Dr. H. From what I've heard, the Mayo clinic is generally negative about the idea of neurological celiac disease, so if you think you have NCD and you've been seen there, get a second opinion.

In other news - you can get the House episode on DVD. . .it's a great episode (I think second season, quite late. . .around episode 17-20??), although I don't recommend it for the new moms or moms-to-be (I've been coping with celiac disease for six years and thought I was pretty on top of everything, but the implications of that episode threw me for a serious loop. . .almost as big a loop as when my favorite ex got married :blink: ).

Please feel free to take/send my post to your doctors, support groups, etc, anywhere you think it will help. . .I wrote this to spread the word, so let the word be spread - just make sure the people you give it to know somebody else wrote it! ;) I'm not a member of any physical support groups because I found them to be very negative and that going caused me to focus on all of the things I couldn't do which was hard (on me and my group-mates) because I was discovering life for the first time in a long time. Let me know if you would prefer a document copy of the original post and I'll create one.

Fiddle Faddle, yes, I will give some serious thought to fleshing this out into documented form, but I'm working full time and working on a PhD (and trying to have a life in my spare eleven minutes a week :P ), so I wouldn't advise you to hold your breath. . .I'll get to it as I will get to all good things: when the time is ripe.

And I also have to say that the original post was the result of years of thinking and learning - I was my GP's first celiac patient. . .and nine GPs later, I still am. And that doesn't include all of the med students I've talked through my medical history - I strongly urge all of you to get in touch with your local med school and volunteer as a test patient. . .you do a session with a med student, or team of med students and talk them through your medical history, either as a narrative (ie, symptom, symptom, symptom, etc, diagnosis) or to encourage a diagnosis (doc, I have these symptoms, what is your diagnosis?). . .only you don't have to have the nasty tests done! It is an important learning tool for young doctors, and good med schools are always on the lookout for people with unusual (or easily mis-diagnosable) conditions. Also take the time to run through your complete medical history when your Dr has a student sitting in. . .after a few gos, you'll get it down to a five minute patter, I promise.

One more awareness point while I'm spreading the word: for your own safety, please make sure that TWO people are always on top of your medical conditions - if you travel, make sure these people are someone you travel with and someone who stays safely at home! - and try to have their contact numbers on your person at all times, clearly labelled for emergency use (mine are on my mobile, marked Emergency Megan and Emergency Mike). . .make sure your boss and coworkers know who to call if something happens to you at work. If you have NCD, this is information paramedics and emergency room doctors need to know, for example, if you're treated in hospital for heart attack or stroke, and especially important if you have, as I do, epileptic or adrenaline responses to gluten.

And the last point, lest I end sounding as negative as my erstwhile supportgroups: take a moment out of every day to enjoy being gluten free. . .waking up wholly in my self still makes me grin like an idiot. And that has to be the best thing that's ever happened to me. :D

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Thank You Thank You...I'm astounded.

It fits me to a T also.

Esp the lazy eye..who would have thought..and the drunken walk..

going to show to hubby. It's a good thing i don't drink anymore since Dx'd 16 months ago but he and all I know would think I was a closet drinker.

i can't thank you enough.

it was sooo very well written.

Going to print and send to my dr.

Judy in Philly

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I'm not sure where to put this (so moderators please move it if you think it belongs elsewhere!), but I think this is getting ignored by both the celiac community and our doctors on a regular basis, so I just had to say it.

Celiac disease has been in the news quite a lot lately, and while this is a good thing in general, I worry when I hear people (both celiacs and doctors) explaining celiac disease in a way that is misleading or just plain wrong. I've said it before, and I'll say it again (probably a thousand thousand times): Celiac disease is not a gastrointestinal disorder. Celiac disease is a systemic auto-immune disease. What brought this to the boiling point was a recent discussion with my newest doctor (I moved postcodes, and had to acquire a new physician. . .damn) about celiac disease. Like most GPs, my new doctor doesn't know much about celiac disease (he admits "we studied celiac disease in med school for about five minutes"), but he's relatively open minded and wants to learn what he can. So we talked.

I said: "Celiac disease is an auto-immune disease in which the presence of gluten in the body causes systemic immune responses that manifest in each patient in diverse and potentially changeable ways. The most common manifestation is a gastrointestinal response - so-called 'classic' celiac disease - characterised by diarrhea, malnutrition, vomiting, weight-loss and lethargy. A second common manifestation is in dermatitis herpetiformis, lesions in the skin, frequently on elbows and knees in a circular pattern, but also relatively common on arms, legs, face, scalp and torso. The most definitive diagnostic symptoms of DH are therefore symmetricality and improvement on a gluten free diet, with positive biopsy where possible. A third subset of celiacs may present with one symptom or an inconclusive cluster of symptoms, so-called 'silent' celiac disease. In keeping with the systemic nature of the disease, celiac disease may also manifest in other organs, including the liver, kidneys, gall bladder, and brain."

"Hang on," he said. "Celiac disease can affect the brain?"

"Yes," I said. "A number of studies done since the 1970s suggest that gluten antibodies may cross the blood-brain barrier to form lesions (usually calciferous lesions similar to those found in alzheimers or parkinsons patients) in the brain. These lesions usually resolve, for the most part, on adoption of a strict gluten free diet. The evidence for neurological effects of celiac disease are supported by the experiences of many celiacs who report symptoms such as depression, migraine, or mood swings that would suggest the involvement of the brain. Other celiac patients present with specifically neurological symptoms such as ataxia, poor motor-coordination, neuropathy, vertigo, loss of sensation, epilepsy, speech problems and memory loss, but without significant symptoms that would otherwise lead to a traditional neurological diagnosis.This has led to the adoption of the term 'neurological celiac disease' to describe patients with significant neurological responses to the presence of gluten who may or may not experience (severe) gastrointestinal symptoms."

Most of you will probably recognise yourselves in the first part of the above discussion, but some of you will recognise yourselves primarily in the last part of the discussion: you hear 'ataxia' and remember stumbling and staggering through life as if you were drunk, clinging to handrails and walls and occasionally wiping out in the midst of crossing busy intersections, while 'neuropathy' conjures up the thousands of times you've sat at your desk shaking your hands and feet like a compulsive freak in a desperate attempt to make the pins and needles go away. You may remember the horrible feeling of searching desperately for the word you used to know and loved to use, and stuttering out an inadequate alternative because the silence has stretched too far. Or maybe you remember feeling the world spin underneath you when you lay down, or that funny disconnected feeling that made moving your body feel like trying to drive a car made of jello. Maybe, like me, you played thousands of hours of catch and never once caught the ball. And you can probably remember the day you felt, for the first time in years, like you truly inhabited your body - the day you made it to the bathroom at the end of the hall without tripping over your feet or walking into a wall, or the day you caught the keys somebody tossed to you, or maybe it was the day you crawled into bed and didn't feel the world spinning. The day you realised that all of your stuttering and stumbling and spinning had a cause: gluten. That was a magical day (although I must admit I do miss feeling the world spin. . .I rather liked that. . . :P ).

On the whole, I think we've done pretty well as celiacs in educating our doctors, nurses, anesthesiologists, dentists, family and friends on what it means to be a celiac - in some places, the tests for celiac disease are now ordered as a matter of course when diagnosing digestive difficulties. But just as researchers are still studying celiac disease and coming up with new information, we need to keep educating. What I'm asking is that we start to mention neurological celiac disease to our doctors and nurses and dentists and family and friends when we talk about celiac disease, because our brains are not as resilient as our digestive systems. We all know how hard the diet is, but I know of one little boy who will not only have to cope with a gluten free diet, but will always need a walker to get around, and will suffer from severe mental disabilities all his life because it took four years worth of doctors - and thousands of tests - to realise that he had neurological celiac disease.

You should be a doctor, great message. Thank you. :D

I am one that has very many of all the symptoms you named and I just found out 2 months ago that I have Celiac disease. I have had the pain and skin problems for years. Boy, I am sure glad I found a good GI doctor to get me on this gluten-free diet. Howevever, I have more headaches and leg cramps more than I ever have in my life time. What could that be? Valerie

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Hi Valerie,

Your headaches and muscle cramps are probably detox - your body will go through a kind of withdrawal over the first couple of months (if you've been very sick, it could be worse), but if you are getting more than one headache in ten days, you need to make some changes to your diet. Call your GI and ask for a referral to an experienced nutritionist who can help you sort out which changes you need to make. Before you go to see the nutritionist, keep a food diary for a week - note what you ate, how much you ate and when you ate it, as well as any headaches and cramping (time, intensity and duration), and try to avoid taking painkillers. . .I know its hard but they could be making the headaches worse (if you are really suffering, put your thumb between your eyebrows, right above your nose and press gently for a minute. . .the pain should ease for a bit). Remember that you probably won't get hungry for the first few months, so the headaches could be your body trying to tell you that you haven't eaten enough. Try and get a little fruit sugar into you every couple of hours - a small glass of juice, a handful of dried fruit, a small piece of fresh fruit (veggies work too if you're really not a fruit person, but you have to eat a few more) - to reassure your body that you haven't forgotten about it. Start each meal with a little bit of fruit sugar, and step up your potassium intake (either more bananas or a potassium supplement. . .just make sure the supplement is gluten-free) to ease the cramping. When you do get a cramp, warm the area (hot water bottle works well, but in a pinch, soak a washcloth in hot water, drop in a plastic bag and press against the area) and gently stretch and massage.

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hi bluejeangirl, sorry I have been away for a few days. By now you will probably have googled "hypermobility syndrome (and) gluten" and found the hypermobility syndrome association forums. If not, it's: www. hypermobility.org.uk and although there is much talk of drug treatment/physio etc (what's new?) there is also some reference to diet and gluten exclusion. The syndrome seems to be associated with other conditions - FMS, CFS, IBS and anxiety disorders (panic, phobias, fears). More worryingly it may also be associated with mitral valve prolapse so it needs to be checked out. It's genetic so if no relatives are affected, it's unlikely to be that - something like 3 - 10% of the population have super-bendy joints but no other symptoms. Please don't panic as I did (it's pathological, you know, with us HMS types) to see it also sometimes described as Ehlers Danlos type 3. There is a lot of confusion but EDS type 3 and benign hypermobility may be the same condition and are both very much less serious than other EDS types. The main value of diagnosis is having so many things in your medical background fall into place once you know the cause. I am totally convinced that gluten sensitivity is involved (co-existing in genetic types or actually caused by, who knows?). Since going gluten free seven months ago, my joints feel a lot stronger, more dependable in that I can run or jump without worrying they'll dislocate, and the pain has gone (after close on 40 years). And I am no longer a nervous wreck. Hallelujia. Hope this is of some help.

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