Celiac Disease: Not Just A Gi Problem

[Sophiekins]

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. . . ).

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.

[Helena]

Great post! I like the term "neurological celiac disease." Did you coin it, or is it a term used nowadays?

Do you have any references that we might pass on?

I have read one article or editorial, rather, in a medical journal suggesting that we need a paradigm shift in our understanding of celiac . . . . that it is time to stop seeing it as primarily a GI disease.

(See: Open Original Shared Link

But I haven't come across anything discussing gluten as a cause of lesions in the brain---I'd be interested in looking into that further.

[SchnauzerMom]

Wow, this explains some symptoms that I had a while back. I was lying in bed and felt really weird. When I opened my eyes the room was spinning around. I had to just lie there for a while until it stopped. It only happened once but it was a really strange experience.

[Lisa]

I am so amazed at your post. How did you know so much about ME!!!

[Nantzie]

Well said!!

Nancy

[kbtoyssni]

Very thourough explaination - thank you! I agree that celiac is not just a GI disease. The majority of my symptoms weren't GI-related. Sure I had some stomach pain, but that was nothing compared to the fatigue, joint pain, brain fog and depression.

[i canary]

Thank you. I fit into set 1 and 3. I didn't realize that my clumsiness was really Celiac. I've been upset with my inability to use certain words because I just can't get my tongue around the sounds. I've gotten used to the world spinning when I lay down - I forgot it wasn't normal. My magic day of knowing it was all gluten was today thanks to you, Sophiekins.

[tiredofdoctors]

That was an excellent description of Celiac disease. I have neurological celiac, as well. Caught it a little late, so I'm in a wheelchair. If I'm not, then I fall a LOT. I have really poor coordination now, occulomotor apraxia / ataxia, difficulty swallowing, autonomic dysfunction . . . . and on and on and on . . . !!!

There is a type of cell called Perkinje cells in the cerebellum of the brain (and in the retinas of the eye). Perkinje cells have a protein on (in?) them that VERY strongly mimics gliadin, because Perkinje cells rely on gliosis. So, when you have antigliadin antibodies, they can mistake the proteins on the Perkinje cells for gliadin, and destroy them. Then, you have lapses in the transmission of the cerebellum -- which is command central for your brain. Everything flows through it. In the United Kingdom, they have done Magnetic Resonance Spectroscopy in order to map the synapses of the brain. What they found in patients with neurological celiac is that the cerebellum (depending upon how severe) has simply had so much damage that there are multiple lapses throughout -- making it VERY difficult for the body to function normally. Since it's late, I'm not really thinking clearly, so I can get that link for you if you'd like.

I wish that more doctors, when going on television now, would emphasize that celiac IS an autoimmune disease, and that it IS systemic. It would be nice to have all us neurological celiacs on a show and say, "THIS is what Celiac looks like, too!" Sure would be a shocker, huh???!!!

[sparkles]

WOW! Your description of the neurological damage contributed to celiac disease fits me to a T!.... especially the part about not being able to find the right word.... knowing the word is in my brain but can't find a way to my tongue.... I am sending my Internist and my Neurologist the link to the study mentioned by Helena. In fact, I think that I will print it out and send them the hard copy.... with the hope that they will seek to look at the link! My digestive symptoms have gotten better but there are those nagging neurological symptoms that just hang on and on and on. I am glad to know that I am not crazy and that those symptoms are not just in my head (ok, so they are but at least they are not made up). I have always felt that there was permanent neurological damage. I suffered from severe migraines and depression before going gluten-free. The migraines have subsided but the depression has hung on though I am no longer on meds for that and seem to be able to handle the depression most of the time. The neuropathy is a different story. No matter how well under control the diabetis and the celiac disease are, the neuropathy symptoms just seem to be getting worse. At first it was just my feet and legs but now it is affecting my hands, arms, and even my tongue. I see the neurologist in Dec and can't wait to share this info with her. The only sad thing is that the damage seems to be permanent. It makes me angry that I went through 20+ years of being "sick" and because I am overweight, no one thought to check for celiac disease and by the time it was found, my villa were flattened. It just makes me wonder how many other people are misdiagnosed because they are overweight and will just be told that if they lose the weight, they will be ok. I know that is a different thread but it still angers me. Anyway, thank you for the great insight. I am printing up all this information.... the first and second post as well as some of the other posts and the link and sending them on to my docs. I am frustrated, angry, and without hope when it comes to the neurological damage. There are so many IF ONLY's... IF ONLY I had known sooner being the really important one.... eliminating gluten from my diet 25 years ago would have made such a difference in my quality of life today. This is an illness that doesn't require meds... IF ONLY!!!!!

[ravenwoodglass]

As a celiac who presented with neuro symptoms 30 years before the GI ones set in with severity (IBS!!!!!!) I appretiate your post. I even had the calcifications show up on an MRI and was told they were 'UBO's unidentified bright objects. I was also told by more than one US neuro that they were nothing and not the reason for my problems. Here have a prozac. If only the doctors in this country would get their heads out of the pharmacology books and look at some of the research in other countries maybe some of the neuro damage I have would not be permanent.

[Guest nini]

I am crying as I read this thread... this describes the neurological manifestations in my family that have been a puzzle for so long. My dad suffered from Epilepsy for many years and also has gastrointestinal issues, me from non specific seizure disorder and many other neurological effects and the saddest case, my grandmother, currently resides in an Alzheimers care facility because just a few short years ago she was a healthy vital woman and then with the death of my grandfather from cancer she began to decline RAPIDLY. She lost major amounts of weight and rapidly descended into full blown alzheimers symptoms to the point she could no longer live at home and most times doesn't even remember her loved ones. I've given up calling her because she no longer knows me. As long as I can remember, my grandmother always suffered from severe vertigo, and in talking to my dad, he said that HER MOTHER was committed to a mental health facility before her death.

My dad is currently on the gluten-free diet and has notice some improvements in his overall health...

could it be possible that not only me and my dad suffer from this, but also my grandmother, and is this what killed my great grandmother??? It sure would solve a lot of family mysteries.

I can't stop crying, thinking that my grandmother may be suffering needlessly because the medical community never looked for this in her... She's only in her early 70's... I told my dad that he and his brothers need to be an advocate for her and insist that she be screened for Celiac, but also insist that the care facility try the gluten-free diet with her... although I'm afraid it may be too late for her.

[Nancym]

Beautiful post! If you click on "The Gluten File" link under my siggy and navigate to the neurological sections you'll see the amazing compilation that Cara has done. I think my family gets the neurological form but rather lightly. I'm so grateful to have caught this before I got too far along.

[jerseyangel]

Sophiekins,

That was a great post! I saw so much of myself, and other family members in it. I agree that Celiac is not just a GI issue--gluten affects many other organs and systems in the body.

[Corkdarrr]

This is a very well-written post - and one that clearly many of us can identify with.

Since going gluten-free, some of the most noticable symptoms of being glutened for me are neurological - especially brain fog and what can only be described as 'pure dumbness.' I get tongue-tied, clutzy, stumbly...

I remember last time I was glutened my boyfriend and I were still searching for houses. He told me the address to type in to do the search and it took me 3 tries where I just couldn't get it straight! It was like my hands were dyslexic...either way, I gave up and let him type it in.

Courtney

[marciab]

Just add fatigue to this and you have described me to a tee. I had the digestive problems (IBS ) , the rash and the nuerological symptoms.

Luckily most of my symptoms, including my nuerological complaints have been resolved by going gluten-free. And the fatigue was gone comletely for 2 weeks straight in Oct, so I remain hopeful.

Marcia

[Sophiekins]

Wow.

I had no idea people would react like this. . .thank you!

This post has got to be short as I had just intended to drop in briefly on my way to do a bunch of other stuff online. . .I was totally not expecting this kind of response! I promise to come back later this week and suggest some useful links to research, although I am by no means an expert, since I've only recently found out about neurological celiac disease (and no, I didn't coin that one, it is the official medical term) since I started having epileptic episodes when ingesting gluten. I'm still in the hunt for useful articles etc as I am in the process of educating my various doctors.

Please keep posting your thoughts. . .it's great to hear other people suffer the same things.

[jerseyangel]

I'll be looking forward to your links--thanks again

[Tay]

Thank you for this post, and for the link to the article about gluten sensitivity as a neurological disease. After one year of my pestering him, my father was recently diagnosed with celiac disease. He is now in his 60s and was diagnosed with multiple sclerosis and type 1 diabetes in his 30s. I hope to convince him that despite his perceived lack of GI symptoms, a gluten free diet is waranted becasue it may reverse some of his neuological symptoms. I suffer from peripheral neuropathy, anxiety, depression and forgetfullness, similar to what you describe. I am waiting (impatiently) for these symptoms to improve with my gluten free diet. Your post and article give me renewed hope.

[Fiddle-Faddle]

Sophiekins, that was just fabulous--clear, concise, and well-written.

I was wondering if you had ever thought of putting it into thesis/research paper format, with documentation, etc? Then we would all have something to wave in our doctors' faces THAT THEY COULDN'T ARGUE WITH OR IGNORE!!!

Heck, then you could send it to the media!!!!! If this hit the newspapers and shows like Geraldo, Oprah, 20/20, 60 Minutes, etc--this just might bring down the almight Pharm god and at least some of the corruption in our health care system might disintegrate....

[happygirl]

Sophiekins,

Thank you for such a well-written post. It makes me hopeful that there are people out there, speaking up, and trying to change things. We are so happy to have you on this board!

Fiddle-Faddle, if you are looking for a written resource about this---there is one! The book in my signature, by Dr. Green, covers this all...at least in a readable and understandable format. I just looked in the index and under "neurological manifestations", it lists:

ataxia

autoimmune reaction

causes of

cerebral calcifications

epilepsy

gluten free diet

inflammation

migrates

nerve conduction studies

paralysis

peripheral neuropathy

vitamin deficiency

Chapter 7 is entirely devoted to neurological manifestations. Their IS research out there on it (now, it is still in the beginning stages), but like Sophie so eloquently put it, doctors aren't learning about it...and most importantly, they ARE NOT keeping up on the research. I have brought this book with me because doctors like to argue with me and tell me that "so little is known"...I tell them I know we are just on the tip of the iceberg, but it is their fault that they don't keep up on what IS out there.

(The book is divided into sections: Part 1 ("Is the food you eat eating you") covers normal digestion, the digestive track in flames, how does celiac disease affect you, how do i know if i have it-the diagnosis of celiac disease, differential diagnosis: why is celiac disease underdiagnosed, why to people get celiac disease. Part 2: (Related Conditions and Complications) includes the above-mentioned neurological manifestations, malignancy, osteoporosis, depression, dh, diabetes, infertility, autoimmune and other related conditions. Part 3 (Understanding and treating celiac disease: Medical Management) covers: what you need to know-and do-after dx, why symptoms persist-I'm on the diet and not getting better, follow up testing. Part 4 covers gluten free cooking, cross contamination, labels, eating out, drugs, etc.

[Kaycee]

This thread has been very interesting.

I think I have been affected neurologically quite mildly, but I have suffered depression in the past, once when I was barely 10, and then off and on over the years. I will always remember being called dropsey, when I was young, as I kept dropping things, especially the dishes I was driving. That tendency has gone, as I can't affort to replace all the crockery etc. But I still think I do my fair share of breaking cups.

At times I do stumble over my words, and at times I even have problems pronouncing them, let alone trying to remember some of the different names that have been presenting themselves in the children at school. They are unusual names, and there are a whole bunch of them.

But this is only mild compared to others who have suffered so much more than me.

But my mother probably has coeliac, I have tried to get her tested, but she is stubborn, or is it dad that does not see any benefit in it as he feels she is getting on and would find the diet too hard. But she does read labels and watches out for coconut and palm oil. When I was young she had a breakdown, but that could've been because of postnatal depression, and she did have shock treatment and I think that was quite drastic, but it seemed to do the trick, as she has not had any other depressive illnesses. She now has a bit of a shake to her head, I don't know if this is part of the neurological symptoms of coeliac, but she does have digestive problems and is rather clumsy, and seems quite heavy in her walking, but she is not overweight. A bit like how I feel after being glutened.

My dad has tested negative, but in his family there is a history of bowel cancer, and I have had about 5 aunts and uncles who have succumbed to this disease in their later years. So who knows where this disease has manifested itself from. I feel like saying, who cares, but I care, this is my family and they are pretty stubborn when it comes to being tested. All I can do is suggest, they are all adults, and if they don't heed the danger signs, it is no fault of mine.

Enough of that, I am now focussing on my grandfather, my mums dad, who died when I was about 9, he would've been 69, and had spent his last few years in a mental asylum. No body at that time, in the sixties had said much, and me being young did not question. Later on mum said he'd had a stroke, but she has since said he had alzheimers, which would not have been a topic of daily discussion then, unfortunately. So all along I had been thinking that this disease has come from my mother's mother as she had arthritis from a very early age, but now after reading this thread, I am not too sure. It could be genes on both sides. Still I know that there are so many things out there that could happend to me through genetics, and having only been diagnosed this year with coeliac, and I am nearly well past the 40's, I do worry about my future, and this is all the more reason to keep gluten-free.

Cathy

[Rebecca47]

I am so happy that I read this. I have been having trouble with my eyes all writing seems to be to small to read. I was crossed eyed when i was born (lazy eye) and they repaired it when i was 9 yrs old. It still could be lazy eye again, i will work on that next. Now it seems like my boyfriend is always telling me that things i say dont make any sense and try to say it better so he will understand it. Big words escape me and words jubble up. I have had time even tring to type and make it come out ok and not sound weird or repeat my self without knowing i have. What do you think? Should i talk to my doctor about this?

rebecca

[Guest nini]

I am so happy that I read this. I have been having trouble with my eyes all writing seems to be to small to read. I was crossed eyed when i was born (lazy eye) and they repaired it when i was 9 yrs old. It still could be lazy eye again, i will work on that next. Now it seems like my boyfriend is always telling me that things i say dont make any sense and try to say it better so he will understand it. Big words escape me and words jubble up. I have had time even tring to type and make it come out ok and not sound weird or repeat my self without knowing i have. What do you think? Should i talk to my doctor about this?

rebecca

OMG!!!!!!!!!!!! I too was born with a lazy eye and had surgery to correct it when I was 7!!!!!!!!!!!! I never knew anyone else that had that happen!!!! (I always thought I was just a freak)

should you talk to your Dr. about it... possibly, you've only recently been dx'ed with Celiac, so you may want to give the diet some time to see if all your weird symptoms go away or not... I had a ton of weird symptoms that went away after going gluten-free and only resurface when I am accidentally glutened (one of which is my eyes twitch) I had major issues with my words getting jumbled up, I was dx'ed dyslexic in community college after unanimously failing my entrance exam because I transposed all my answers.

[Rebecca47]

OMG!!!!!!!!!!!! I too was born with a lazy eye and had surgery to correct it when I was 7!!!!!!!!!!!! I never knew anyone else that had that happen!!!! (I always thought I was just a freak)

should you talk to your Dr. about it... possibly, you've only recently been dx'ed with Celiac, so you may want to give the diet some time to see if all your weird symptoms go away or not... I had a ton of weird symptoms that went away after going gluten-free and only resurface when I am accidentally glutened (one of which is my eyes twitch) I had major issues with my words getting jumbled up, I was dx'ed dyslexic in community college after unanimously failing my entrance exam because I transposed all my answers.

wow i didn't now anyone either. My right eye is the bad one. if i look in a mirror my rt eye moves towards nose. when i concentrate on my rt eye i see what looks like a sm body of water that is moving on the left eye on the side weird. i can only read with my left eye not even knowing it cause both eyes dont read at once and if i try all gets very blurry. i went to empire college in 2003 and it feels like i didnt learn a thing. I know i passed with a grade pt average of 3.94, but it hard to remember any of the lessons (bookkeeping) I know that i couldn't get a job in that right now because i wouldn't feel like i couldn't be good at it. maybe later.

rebecca

[Guest nini]

my eyes still cross when I get tired, to be honest I can't remember which one is my bad one as they both seem bad sometimes... the one thing I notice is ever since the surgery (well maybe even before) my eyes don't work together and I can't see things like 3D pictures and I can't use a view master (that kids toy) I also don't remember a lot of things that I've learned over the years... like massage school, I certainly remember HOW to do a massage, but all those days I spent in "anatomy hell" are lost on me...