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What is Gluten and Dairy Intolerance? What is the difference between an allergy and intolerance/sensitivity. Latest medical research. Open to the public.

TOPIC: Neurological Celiac disease- Neurological symptoms

Neurological Celiac disease- Neurological symptoms 28 Nov 2006 23:27 #465

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A personal experience regarding the neurological problems gluten intolerance can cause is so often overlooked, please read through this wonderfully written essay originally posted on celiac.com's message board.

With permission from Sophiekins it's posted here for the benefit of those who may recognize themselves:


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 alzheimer's or parkinson's 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.

Neurological Celiac disease- Neurological symptoms 01 Nov 2007 18:52 #468

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debra,

what does bump for alex mean? yes i recognize myself. now what? find a doctor who will listen, i suppose. maybe i can talk to the woman who wrote this?

thanks again.
a

Neurological Celiac disease- Neurological symptoms 01 Nov 2007 19:16 #469

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Hi Alex,

Yes, finding a new GI doc or neurologist who understands that gluten can affect your brain is a good start, however in your case you need to make sure they also understand selective IgA Deficiency.

Bump just means I moved an older post to the top again so you can see it. Some of the best posts are older ones that need to move up again. I could pin it to the top but I have so many already pinned. 

Neurological Celiac disease- Neurological symptoms 02 Nov 2007 18:23 #467

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Hi Deb,

Interesting [and frustrating story] and all too common, sadly :(

I just thought I share this with the board...I know it might be a bit technical, but if people walk away with the mere fact that "gluten can affect something other than the gut"...that's a start!

Dr. Hadjivassiliou is a neurologist in the UK at The Royal Hallamshire Hospital . He has done extensive work in the neurological aspects of how gluten affects the body.

A special thanks to my friend Anne for assembling these articles.


Myopathy associated with gluten sensitivity, Dec 2006
www.ncbi.nlm.nih.gov/entrez/query.fcgi?d...&itool=pubmed_docsum

Dietary treatment of gluten neuropathy. Sept 2006
www.ncbi.nlm.nih.gov/entrez/query.fcgi?d...&itool=pubmed_docsum


Neuropathy associated with gluten sensitivity, Nov 2006
www.ncbi.nlm.nih.gov/entrez/query.fcgi?d...&itool=pubmed_docsum

Autoantibody targeting of brain and intestinal transglutaminase in gluten ataxia. Feb 2006
www.ncbi.nlm.nih.gov/entrez/query.fcgi?d...&itool=pubmed_docsum

Cerebellar abnormalities on proton MR spectroscopy in gluten ataxia. July 2005 - free full text
www.ncbi.nlm.nih.gov/entrez/query.fcgi?d...&itool=pubmed_docsum

Are lower gastrointestinal investigations necessary in patients with coeliac disease? Jun 2005
www.ncbi.nlm.nih.gov/entrez/query.fcgi?d...&itool=pubmed_docsum

Multiple sclerosis and occult gluten sensitivity. Mar 2005
www.ncbi.nlm.nih.gov/entrez/query.fcgi?d...&itool=pubmed_docsum

Making the diagnosis of coeliac disease: is there a role for push enteroscopy? Nov 2004
www.ncbi.nlm.nih.gov/entrez/query.fcgi?d...&itool=pubmed_docsum

The immunology of gluten sensitivity: beyond the gut. Nov 2004
www.ncbi.nlm.nih.gov/entrez/query.fcgi?d...&itool=pubmed_docsum

Gluten sensitivity masquerading as systemic lupus erythematosus. Nov 2004 - free full text
www.ncbi.nlm.nih.gov/entrez/query.fcgi?d...&itool=pubmed_docsum

The Neurology of Gluten Sensitivity: Science vs. Conviction
pn.bmj.com/cgi/reprint/4/2/124 - Free full text

Choreic syndrome and coeliac disease: a hitherto unrecognised association, Apr 2004
www.ncbi.nlm.nih.gov/entrez/query.fcgi?d...&itool=pubmed_docsum

Dietary treatment of gluten ataxia. Sept 2003 - free full text
www.ncbi.nlm.nih.gov/entrez/query.fcgi?d...&itool=pubmed_docsum

A primary care cross-sectional study of undiagnosed adult coeliac disease. Apr 2003
www.ncbi.nlm.nih.gov/entrez/query.fcgi?d...&itool=pubmed_docsum

Gluten ataxia in perspective: epidemiology, genetic susceptibility and clinical characteristics. Mar 2003 - free full text
www.ncbi.nlm.nih.gov/entrez/query.fcgi?d...&itool=pubmed_docsum

Gluten Sensitivity: Time to move from Gut to Brain. Jan/Feb 2003 - full text
www.acnr.co.uk/pdfs/volume2issue6/v2i6reviewart2.pdf

The humoral response in the pathogenesis of gluten ataxia. Apr 2002
www.ncbi.nlm.nih.gov/entrez/query.fcgi?d...&itool=pubmed_docsum

Gluten sensitivity as a neurological illness. May 2002 - free full text - Excellent overview article
www.ncbi.nlm.nih.gov/entrez/query.fcgi?d...&itool=pubmed_docsum

Headache and CNS white matter abnormalities associated with gluten sensitivity. Feb 2001
www.ncbi.nlm.nih.gov/entrez/query.fcgi?d...&itool=pubmed_docsum

Gluten sensitivity: a many headed hydra. Jun 1999 - free full text
www.ncbi.nlm.nih.gov/entrez/query.fcgi?d...&itool=pubmed_docsum

Clinical, radiological, neurophysiological, and neuropathological characteristics of gluten ataxia. Nov 1998
www.ncbi.nlm.nih.gov/entrez/query.fcgi?d...&itool=pubmed_docsum

Neuromuscular disorder as a presenting feature of coeliac disease. Dec 1997 - free full text
www.ncbi.nlm.nih.gov/entrez/query.fcgi?d...&itool=pubmed_docsum

Does cryptic gluten sensitivity play a part in neurological illness? Feb 1996
www.ncbi.nlm.nih.gov/entrez/query.fcgi?c...598704&dopt=Citation

Neurological Celiac disease- Neurological symptoms 03 Nov 2007 01:04 #470

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Hi Al,

What a wonderful surprise. Thank you so much for posting this, you are such a doll. I do have many of Dr.  Hadjivassiliou's articles posted in the research forum, but nothing like what you've posted....sometimes I think it's a good idea to post in both places.

Thanks for thinking of us here. You'd be so surprised at all of the women I'm finding who are gluten sensitive. Many who don't want to make the connection, and many who understand it's more serious than just PMS or PMDD.

I'm actually on vacation at the moment so checking in a little less often. So glad you stop by to see what's going on.
:D
 

Neurological Celiac disease- Neurological symptoms 04 Nov 2007 03:11 #471

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Hey Deb,

Sorry, I haven't seen the research section yet. :( Please - move this where ever you see fit!!

I'm glad you're making people aware of the fact that gluten can and does cause problems [even outside the realm of Celiac Disease]! I guess it's up to them if they decide to heed your advice or not. Hmmm...Denial, that's the 1st stage...

Hope you're having fun on vaca!

Al

Neurological Celiac disease- Neurological symptoms 04 Nov 2007 07:06 #472

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al,

thanks so much for posting all of this research. i'm reading and reading...you don't know by any chance if any of the specialists doing this work are on the west coast of the united states?

also, lots of these studies seem to say once neurological damage is done, not even a gf diet reverses it. do you have knowledge that refutes that?

thanks again,
alex

(i see some are in brazil others in england. maybe this is my chance to travel!)

Neurological Celiac disease- Neurological symptoms 04 Nov 2007 14:34 #473

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[user=246]aklap[/user] wrote:

Hey Deb,

Sorry, I haven't seen the research section yet. :( Please - move this where ever you see fit!!

I'm glad you're making people aware of the fact that gluten can and does cause problems [even outside the realm of Celiac Disease]! I guess it's up to them if they decide to heed your advice or not. Hmmm...Denial, that's the 1st stage...

Hope you're having fun on vaca!

Al


Al, Please Don't worry About It,

I will copy and paste your post inside the research forum when I get some time, so not a  problem. I don't think some members read every forum so this is a good place as well.

Alex, Al can also share his experiences with you on his thread called I think you will also have many things in common with him and others. Celiac forums is one of the best support forums in my opinion.

Okay, back to the beach for more rest and relaxation.

Neurological Celiac disease- Neurological symptoms 05 Nov 2007 02:15 #474

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[user=12]Bast[/user] wrote:

al,

thanks so much for posting all of this research. i'm reading and reading...you don't know by any chance if any of the specialists doing this work are on the west coast of the united states?


Hi Alex,

Sadly, there's not a lot of "neurological" research done in the US when it comes to gluten. Much of the mainstream medical is behind the times when it comes to Celiac Disease and Non Celiac Gluten Sensitivity. Here's a list of Celiac Docs in the US [I'm not sure of their knowledge in the neurological aspects:

www.healthsystem.virginia.edu/internet/d...rticles/Sept0603.pdf

Here's some US neuro docs that do understand gluten and it's effects:

Russell L. Chin, MD
Norman Latov, MD, PhD
Peripheral Neuropathy Center
Weill Medical College of Cornell University,
The New York Presbyterian Hospitals,
New York, New York

millercenter.uchicago.edu/learnaboutpn/t...mmatory/celiac.shtml

also, lots of these studies seem to say once neurological damage is done, not even a gf diet reverses it. do you have knowledge that refutes that?


There's probably not a lot of documented evidence that shows otherwise. BUT...there's all sorts of anecdotal evidence by those of us that have experienced improvements going gluten free and/or dairy free. For me personally, I have experience some neuro improvements, but not complete resolution of all issues. I still have peripheral neuropathy [but it's much much less painful! No more meds for it :D].

I don't want to hijack this thread or board. As Deb said, please check out the links to or GFAB has LOTS of technical and research info if you're so inclined.

Neurological Celiac disease- Neurological symptoms 05 Nov 2007 02:59 #475

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THANKS!! You're too kind!! <blush>

Okay, back to the beach for more rest and relaxation.


I should say so!! Catch some rays for me & Peg! Waiting for Feb - Jamaica here we come!.
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