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For Everyone Who Is A "self-diagnosed" Celiac...


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#1 glutenmommy

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Posted 25 August 2009 - 07:52 AM

...I'm just wondering, after reading Dr. Stephen Wangen's book Healthier Without Wheat, how you all arrived at the diagnosis of celiac. Celiac disease is a very specific subset of a larger intolerance known as Gluten Intolerance. Celiac is only diagnosed when you have villous atrophy; however many more millions of people have Non-celiac Gluten Intolerance which can produce symptoms that feel just as debilitating as celiac. In other words, being gluten-intolerant is completely possible without having celiac disease. I'm not trying to split hairs, just wondering how you all arrived so definitively at your diagnosis of celiac. Only 1% of the population has celiac disease while an estimated 20-30% have non-celiac gluten intolerance.

By the way, the reason many of the bloodtests come back with false negatives is because you have to have total villous atrophy (or something darn close to that!) before the antibodies can escape into the bloodstream (which further bolsters Wangen's claim that many people have non-celiac gluten intolerance rather than celiac disease and that's why it is so often missed in labwork). It doesn't mean your symptoms are any less real or devastating; just means that you don't have celiac disease (villous atrophy) per se.

I'm not sure why any of this matters; I'm just wondering if we do ourselves a misservice by "self-diagnosing" celiac rather than accepting the more widespread diagnosis of gluten intolerance. I don't think the diagnosis of non-celiac gluten intolerance is any less "legitimate" than celiac disease, so I'm not sure why so many seem to be searching for that label. Clearly doctors need to be better educated about the serious side-effects gluten can cause, whether celiac or non-celiac gluten intolerant. Just because you may not have celiac doesn't mean the doctor should dismiss you or discount your symptoms. I highly recommend Healthier Without Wheat for anyone who is interested in an in-depth analysis of this.

Just thinking outloud....
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#2 Lisa

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Posted 25 August 2009 - 08:12 AM

You have written a very interesting post. I bet it will receive a lot of replies.

Much of the frustration I see on this Board is that there is no "wide spread diagnosis of Gluten Intolerance". Doctors can't seem to see this "grey" area or spectrum of diagnoses. Although, I believe that Gluten Intolerance and Celiac are different, yet similar. The statistics indicate that it take up to eleven years to obtain a diagnosis for Celiac Disease and anything shy of that is diagnosed as psychosomatic or IBS.


I do not believe that Celiac Disease is diagnosed by "TOTAL Villous Atrophy". The Marsh Scale indicates several stages of the Disease.

(I am not self-diagnosed :mellow: )
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Lisa

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#3 mushroom

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Posted 25 August 2009 - 09:13 AM

I do not know which I am, celiac or gluten-intolerant, and it really makes not one whit of difference to me.

My short-form history is that I first became lactose intolerant; then developed the gastric/digestive issues, then rheumatoid issues, then psoriasis. In researching rheumatoid arthritis I came across ankylosing spondylitis which actually is treated with a gluten free diet, so I wondered if my rheumatoid problems would respond to a lack of gluten. Unfortunately, they did not but my constant bloating and gas and cramping did. I have since had several other food intolerances reveal themselves, but my lactose intolerance is improving. I was never tested; no one even thought of it, and to me it does not matter since I have no children and hence no genetic issues, although I do have a sister who is self-diagnosed celiac with a diagnosed celiac daughter and I have a strong family history of digestive problems.
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

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#4 tarnalberry

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Posted 25 August 2009 - 09:44 AM

in mainstream medicine, the idea of non-celiac gluten intolerance isn't quite so accepted or clear as in that book you're using as reference. maybe a little less this year than three years ago, but the point is that this is very volatile ground, and particular words don't have the strictest of definitions. it's like trying to split a hair, when you really have a twig.

in the spirit of the question, however, I would probably argue that if you could be fairly confident of nutritional deficiencies before going gluten free (say, anemia) that clear up after a while gluten free, that I'd call that celiac, rather than "just" gluten-intolerance, as it indicates there was likely malabsorption due to villous atrophy.

in the end, though, I really don't think it matters.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
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#5 OliveBranch

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Posted 25 August 2009 - 09:59 AM

I think the previous responders are right on the money in saying that gluten intolerance is not widely accepted (or at least not widely thought about) in the medical community. If it were, then it would not have taken me FOURTEEN doctors even to get the suggestion that gluten might be causing my problems. No kidding -- I went to thirteen different doctors, some primary physicians, some diverse specialists, over a two year period, and went through multiple misdiagnoses and pointless treatments with no suggestion that celiac/gluten intolerance could be the source of my misery. (I am not yet a confirmed case, but all of my symptoms are consistent with celiac, so any doctor OUGHT to have at least thought of this.) Doctor #14 had the idea that I should be tested for celiac, but did not further suggest that I could be ill due to gluten regardless of celiac status. It wasn't until I came to this forum that I learned about this whole spectrum of intolerance.

Ultimately, it won't matter to me at all whether it is called "celiac disease" or "gluten intolerance" if I can recover from two years of constant symptoms.

PS -- These doctors I saw were no idiots. I live in an urban area and go to doctors in top-ranked hospitals. But they are definitely not trained to think of gluten quickly as a source of trouble.
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#6 Tim-n-VA

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Posted 25 August 2009 - 10:02 AM

...
By the way, the reason many of the bloodtests come back with false negatives is because you have to have total villous atrophy (or something darn close to that!) before the antibodies can escape into the bloodstream (which further bolsters Wangen's claim that many people have non-celiac gluten intolerance rather than celiac disease and that's why it is so often missed in labwork). It doesn't mean your symptoms are any less real or devastating; just means that you don't have celiac disease (villous atrophy) per se.
....


I was under the impression that the antibodies were attacking the villi leading to the atrophy not that the atrophy allowed the release of the antibodies. I'll admit that I don't understand a lot of the technical stuff and Wikipedia should be looked at with a little skepticism but their article seems to support my impression. Most articles I found in other sources just said the villi get damaged in response to gluten consumption without really describing the mechanism.
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#7 tarnalberry

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Posted 25 August 2009 - 10:23 AM

I was under the impression that the antibodies were attacking the villi leading to the atrophy not that the atrophy allowed the release of the antibodies. I'll admit that I don't understand a lot of the technical stuff and Wikipedia should be looked at with a little skepticism but their article seems to support my impression. Most articles I found in other sources just said the villi get damaged in response to gluten consumption without really describing the mechanism.


The question is not whether or not the antibodies are produced, but whether or not they can be detected in the blood stream. They certainly are produced and lead to the atrophy, *but* one theory is that there is not enough damage, enough intestinal permeability, for the antibodies to make it through the usually tight intestinal wall to the blood stream until there is significant damage. I certainly don't have an answer.
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
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#8 jststric

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Posted 25 August 2009 - 10:28 AM

I, too, started out with dairy intolerance for years before the glutens along with many other food groups kicked in on me. I, too, live in an urban area that has top-notch doctors and I saw many, many of them and none of them could find anything. No diagnoses, no allergies......should be fine. But I was MISERABLE with VERY embarrassing symptoms. I don't care if I can't call myself a Celiac but ALOT of my symptoms are celiac-LIKE. I take the information and do more research online. I apply that new knowledge to my own situation and body and weigh if it has any validity. Not all of it rings true for me. Probably because I'm not a diagnosed Celiac! But I CAN take alot of the info and apply it to my own situation and a bell will ring true to one more piece to MY OWN PUZZLE. I don't tell a soul that I'm a celiac. But people are beginning to know what that means. It sure shortens the explanations and their understanding when I can say my problems are "much like celiacs".
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#9 Tim-n-VA

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Posted 25 August 2009 - 10:42 AM

I think part of it is just conversational shorthand. I usually tell people I live near DC instead of listing a small suburb that few people have heard of. Similarly, saying you have Celiac disease without a formal diagnosis could just be a convenient short-hand to use in casual conversation instead of a long speil on the symptoms, test failure rates, doctors who don't keep up to date, etc.
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#10 momxyz

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Posted 25 August 2009 - 11:56 AM

I, too, started out with dairy intolerance for years before the glutens along with many other food groups kicked in on me. I, too, live in an urban area that has top-notch doctors and I saw many, many of them and none of them could find anything. No diagnoses, no allergies......should be fine. But I was MISERABLE with VERY embarrassing symptoms. I don't care if I can't call myself a Celiac but ALOT of my symptoms are celiac-LIKE. I take the information and do more research online. I apply that new knowledge to my own situation and body and weigh if it has any validity. Not all of it rings true for me. Probably because I'm not a diagnosed Celiac! But I CAN take alot of the info and apply it to my own situation and a bell will ring true to one more piece to MY OWN PUZZLE. I don't tell a soul that I'm a celiac. But people are beginning to know what that means. It sure shortens the explanations and their understanding when I can say my problems are "much like celiacs".


I like what you are saying here about learning and applying info to your own personal puzzle! But the need to do that speaks to the very question of the original post:

"I'm not sure why any of this matters; I'm just wondering if we do ourselves a misservice by "self-diagnosing" celiac rather than accepting the more widespread diagnosis of gluten intolerance."

I believe the reason many need and seek the more specific diagnosis is because that while we on this board understand the legitimacy and significance of non celiac gluten intolerance, too few members of the medical community do.

Six years ago celiac was ruled out for my daughter.... but I will forever wonder if any of her physical and mental problems would have ever happened, had we been advised to eliminate gluten. She is slowly doing better on a gluten free diet, but prevention is worth 10 pounds of cure.... when I suggested to one of her providers that gluten might be part of her current problems.... well the response was polite but I know I wasn't being taken seriously. I have to wonder if I had told the provider "she's a celiac", would this have changed her outlook?

I work in infectious disease, and 25 years ago, when "chronic fatique syndrome" was being discussed, there were some physicians who reacted to that as though it wasn't a "real" diagnosis but more of a psychosomatic problem exhibited by slightly kooky patients. Although the cause of CFS is still unknown, at least its now an accepted entity.

Similarly, I feel like non celiac gluten intolerance is the bastard child of celiacs disease. A real but mostly not-legitimized diagnosis that you may have have problems engaging a provider in a discussion about.
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#11 tarnalberry

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Posted 25 August 2009 - 12:38 PM

I actually do simply say "I'm gluten intolerant." If I get questions on that (and often I don't), and they specifically want to know if it's celiac disease (or - they're probably thinking - some fad), I simply state "My blood tests were inconclusive and I never had a biopsy. So, it might be, but I can't know for sure." Usually no one asks further questions, if they ask why not get full testing, pretty much the end of the conversation comes when I say "Because I would have to go back on gluten for a couple months for accurate testing. Gluten makes me feel horrid, and I'd rather not feel horrid."
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Tiffany aka "Have I Mentioned Chocolate Lately?"
Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy
G.F. - September 2003; C.F. - July 2004
Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me
Bellevue, WA

#12 Nancym

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Posted 25 August 2009 - 12:48 PM

To myself I call myself gluten intolerant but it's just easier to describe myself as celiac to others than having to recite a lot of abstracts and papers and explain things to people whose eyes glaze over if you get too technical.

As far as I know, gluten intolerance can be just as bad, or perhaps sometimes worse, than celiac disease.

I'll be happy when the distinction is recognized by one's local doctor.
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#13 momxyz

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Posted 25 August 2009 - 01:21 PM

liked "The Gluten File"!
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#14 Lisa

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Posted 25 August 2009 - 01:43 PM

liked "The Gluten File"!



Me too. One of my favorites.
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Lisa

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"Not all who wander are lost" - JRR Tolkien

#15 darlindeb25

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Posted 25 August 2009 - 02:09 PM

As far as I know, gluten intolerance can be just as bad, or perhaps sometimes worse, than celiac disease.


This is one of the truest statements ever. Dr. Wangen agrees...it is a great book, isn't it. It explains everything so well. Dr. Wangen is also gluten intolerant.

The lady who put The Gluten File together is a good friend of mine. She is very well informed, plus gluten intolerant.

I was self-diagnosed, then my PCP diagnosed me as celiac. Quest Labs say I am gluten intolerant. Who do I believe? My doctor, and myself. As I have said, my sister is a diagnosed celiac, we had the very same symptoms, for years and years, except I developed panic attacks, her iron issues were worse.

My neurologist did an ganglioside antibody test on me in Jan, then repeated it in May. The results were high for antibodies, auto-immune neuropathy, as seen in celiac patients.

Anti-ganglioside antibodies


Anti-ganglioside antibodies in coeliac disease with neurological disorders.
Volta U, De Giorgio R, Granito A, Stanghellini V, Barbara G, Avoni P, Liguori R, Petrolini N, Fiorini E, Montagna P, Corinaldesi R, Bianchi FB.
Department of Internal Medicine, Cardioangiology and Hepatology, University of Bologna, Building 11, St. Orsola-Malpighi Hospital, Via Massarenti, 9, 40138 Bologna, Italy. uvolta@aosp.bo.it

BACKGROUND: Anti-ganglioside antibodies have been described in sera of coeliac patients with peripheral neuropathy and cerebellar ataxia. AIMS: To investigate the correlation between anti-ganglioside antibodies and neurological involvement in coeliac disease before and after gluten-free diet. PATIENTS AND METHODS: Twenty-two untreated coeliac patients with neurological dysfunction and 30 untreated coeliacs without neurological dysfunction, 20 patients with neurological disorders, 50 autoimmune disease and 20 blood donors were tested for anti-GM1, anti-GD1b and anti-GQ1b IgG and IgM antibodies by enzyme-linked immunosorbent assay. RESULTS: IgG antibodies to at least one of the three antigens tested were positive in 64% of coeliac patients with neurological symptoms compared to 30% of coeliacs without neurological dysfunction (P=0.02), 50% of patients with neurological disorders (P=ns), 20% with autoimmune diseases (P=0.003) and none of blood donors (P=0.0001).CONCLUSIONS: A significant correlation between anti-ganglioside antibodies and neurological disorders in patients with an underlying coeliac disease has been found. Anti-ganglioside antibodies may represent a new immunological marker to identify neurological impairment in patients with coeliac disease.

A strict gluten-free diet determined anti-ganglioside antibody disappearance in about half of coeliacs.

PMID: 16458087 Mar 2006
http://www.ncbi.nlm....pubmed/16458087


So, am I, or aren't I. It really doesn't matter to me. I am one of the "super sensitive" bunch, which might be why my ganglioside AB's are still high...constant glutening by labeled "gluten free" foods which still contain too much gluten for me to handle. Now that I know all this, and am staying away from all processed "gluten free" foods, and dairy free, maybe these levels will finally go down. I wish this same test had been done before I went gluten free, just to see what the level was 9 years ago...I already had neuropathy then.

I tell people I am celiac, it's easier for them to understand, and more than likely, it's true.
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!


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