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

[glutenmommy]

...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....

[Lisa]

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 )

[mushroom]

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.

[tarnalberry]

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.

[OliveBranch]

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.

[Tim-n-VA]

...

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 Open Original Shared Link 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.

[tarnalberry]

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 Open Original Shared Link 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.

[jststric]

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".

[Tim-n-VA]

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.

[momxyz]

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.

[tarnalberry]

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."

[Nancym]

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.

[momxyz]

liked "The Gluten File"!

[Lisa]

liked "The Gluten File"!

Me too. One of my favorites.

[darlindeb25]

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

Open Original Shared Link

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.

[GFPamela]

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.

I see my older sister getting very good care because she is diagnosed. I asked for screening for osteoporosis (I'm 56) and was firmly told they don't screen until you're 65. Now I'm looking for a diagnosis. For now, "I'm gluten intolerant" is helpful, but because of the long list of health issues that are associated I think I need to know for sure, if that's possible.

[Takala]

I don't refer to myself as a self diagnosed celiac but as gluten intolerant. It is only here that I discuss about being self diagnosed. To any medical people I deal with, I just say I am gluten intolerant so any medications have to be gluten free and let them deal with the consequences, if they would ask why I think that, I point out that a brain scan showed "bright spots" and after over 6 years (hey, I'm approaching the 7 year anniversary....) of my stopping gluten consumption all my neurological symptoms have nearly gone away and I'm not using a cane ... my eyes stopped crossing, I can see somewhat at night instead of being nightblind and partially color blind in one eye, I have no more chronic kidney infections and my arthritis stopped getting worse. I can touch type, something I learned to do in my late forties, which I never thought I'd get the coordination for, and I can write somewhat coherently. I leave out the part about the idiotic neurologist running every test she could get reimbursed for, and pronouncing me a head case after this test showed a reason for the neuro problems, because the the second you say a doctor didn't agree with something they are trained to blow you off and not the doctor.

I really don't have any desire to eat gluten at all so I don't feel like I need a medical diagnosis at this point, unless I started showing lyme disease symptoms.

How I came to this, I was doing internet research on possible causes of MS and noticed that some alternative meds type people were doing gluten free diets and getting symptom relief. Many auto immune diseases are related, and celiac is was listed in this group of stuff I already had. I also match in just one body, many of the ethnic groups that have higher incidences of being prone to celiac/gluten intolerant. I had the symptoms in addition to having the arthritis, but my spinal fluid test did not come out positive. I also noticed that one of the spondy boards has a SCD diet section but they insist on calling it a no starch diet, and then some do well on a low starch diet, and it's basically a gluten free diet that is also very low carb except for fruits and vegetables.... if you are avoiding starch in all forms you are accidently avoiding most gluten. I really feel that if that board didn't have such difficult moderators they'd have many more people having much more success with the low starch and no starch diets, as a lot of them don't know to avoid trace gluten. They have the board divided into sections and the moderators in each section are very hostile if one cross posts in the wrong section, and the no starch people just will NOT refer to this as a type of gluten free diet and insist it's not a version of celiac/gluten intolerant.

I responded very dramatically to changing my diet. Current doctor accepts this, past doctors have not. (short version)

I'm obviously so different off the gluten that this is a no brainer that I should not be eating it, every day I'm just thrilled that I can actually make myself feel differently by what I eat. I mention gluten intolerance and celiac in other internet venues to spread knowledge. The more regular everyday people know about this, the more likely we can shape the responses of the medical profession when presented with these mysterious symptoms, and if that doesn't work, the more likely we can get people to push for blood tests, biopsies, x rays, scans (it's a trip to be told your brain has holes in it over the phone ) genetic testing, responses to diet challenges and food trial eliminations, what ever it takes to get the celiac and gluten intolerant person into a healthier, gluten free eating lifestyle.

If some of the celiacs want to insist I'm not "one of them," all I can think is "whatever" and I'm not going to get into a crisis over it as long as they realize we are going to be also not eating gluten no matter what. If they want to be gluten intolerant I will share.... I don't know if they would want to trade symptoms if they could have a trial run.

[nu-to-no-glu]

I'm not as knowledgeable as all of you, but this topic brought up a question that I haven't found an answer to yet...can gluten intolerance have a genetic effect on family members, like celiac can? Or is it only celiac that seems to run in families? I'm curious bc I'm trying to get myself and son diagnosed and would like to know if it could be gluten intolerance, and not specifically celiac? Great post, by the way! I've been converted through all of this to believe that so many people are negatively effected healthwise by the evolution of our food sources and the amount of "crap" that is in processed foods. It's not surprising that more and more people are intolerant to it!

[darlindeb25]

can gluten intolerance have a genetic effect on family members, like celiac can? Or is it only celiac that seems to run in families?

Celiac is only a small part of gluten intolerance. Gluten intolerance absolutely runs in families. My sister is a diagnosed celiac, our dad and I are gluten intolerant. I have a daughter who is gluten intolerant, she just hasn's fully accepted it, I also have 2 sons who may be.

At a recent support meeting, we had a husband and wife sign up as members, I asked who is the gluten intolerant person, he says, I am, she says, I am, and all four of our children are. A family of 6, all gluten intolerant.

[glutenmommy]

Thanks to everyone for your thoughtful replies to my post so far. I always learn so much on this board! I can see that many people are already thinking about this issue. I am not diagnosed with celiac (nor do I think I actually have it based on most of my labwork) but I can tell you that I feel absolutely horrible when I eat gluten. Bloating, gas, edema, mental fog, loss of balance, etc. Fortunately for me (I think!) I don't get immediate symptoms when I've been glutened, so if I slip or accidentally ingest a small amount it's no big deal. However, if I eat normal amounts over a period of a day or two, all of the symptoms begin to build up to a point where I start to feel lousy again. I wish these boards had a section for non-celiac gluten intolerants, but then considering this is celiac.com I suppose they don't want to branch out into other areas. Celiac or not, this board is by far the most helpful place on the web.

[momxyz]

I think its entirely possible that non celiac gluten intolerance can have a genetic basis... my circumstantial evidence would be my issues, my daughter's problems... and she has two first cousins that have problems that could be related to gluten. (One of the cousins has experienced relief by avoiding gluten.)

[ang1e0251]

I refer to myself as celiac. I wouldn't mind if it were intolerance as long as I feel better. The reason I finally found out is because of the rashes. I'm not prone to skin problems or sensitive to label in clothing or soaps. But suddenly I was miserable with a rash that was getting more serious as time went on. I actually had been having another rash on and off for a year or so but I thought it was bug bites. I kept tearing my bed apart looking for bed bugs I was sure DH was bringing home from business trips!

When I read it could be a sign of celiac disease, I started the diet immediately. My rash slowly healed and it doesn't come back unless I am badly glutened.

I personally think that GI is just a degree of celiac disease. I guess I really don't think that someone who is GI is really immune to damage to their body. It seems to me that they just haven't reached complete meltdown damage at this point. I am no dr so this is just my guess. I think if you're feeling crappy and going gluten-free helps, I don't care if you call it celiac disease, GI or Purple People Eater Syndrome, I'm just glad you found answers!

[darlindeb25]

From "Healthier Without Wheat"

So what is the difference bwtween celiac disease and non-celiac forms of gluten intolerance? Celiac disease is defined by villous atrophy, a very specific type of damage to the small intestine. If you do not have villous atrophy, then you are not celiac. Celiac disease is not defined by villous, atrophy, it IS villous atrophy.

However, many potential probems can result from a gluten intolerance. Villous atrophy is one one of these; therefore, celiac disease is only one form of gluten intolerance among many. Celiac disease does not emcompass or define gluten intolerance.

People often mistakenly assume that celiac disease is the worst form of gluten intolerance and that if you don't have celiac disease, then you don't really have to worry about gluten as much as you would if you had been diagnosed with celiac disease. This idea unfortunately is perpetuated by the medical communtiy, but it is also inherent in the use of the word disease. Celiac is not a disease in the popular sense of the word. It is not a bacteria or a virus, not is it contagious. It is simply a food reaction.

You may have terrible diarrhea triggered by gluten, yet not have celiac disease. Your child may experience poor growth or poor attention span caused by a gluten intolerance, yet not have celiac. You may be chronically anemic (iron deficient) yet not have celiac disease. The list goes on and on.

The symptoms that one person with a non-celiac gluten intolerance experiences may be much worse than those of another person with celiac disease. Or, it may be the other way around.

Recent studies estimate that non-celiac forms of gluten intolerance are approcimately 30 times more common that celiac disease and may affect 15% of the world's population, where celiac affects 1%.

I have always said, non-celiac gluten intolerant people may be much sicker than a diagnosed celiac. I know I have many more issues than a lot of the celiac's I read about in these forums. I have many more issues than my own sister whom is a diagnosed celiac, and our father whom is gluten intolerant.

Just because you are not diagnosed, do not ever think you aren't just as important as any one else. Gluten intolerant people have just as many issues with gluten, as do celiac's. Gluten intolerance is the same for both, celiac is just a different type of the gluten intolerance spectrum.

I have auto-immune neuropathy caused by a gluten intolerance.

Find this book, read it, you will learn so much from this doctor. He is one of us, who better to learn from?

[momxyz]

I refer to myself as celiac. I wouldn't mind if it were intolerance as long as I feel better. The reason I finally found out is because of the rashes. I'm not prone to skin problems or sensitive to label in clothing or soaps. But suddenly I was miserable with a rash that was getting more serious as time went on. I actually had been having another rash on and off for a year or so but I thought it was bug bites. I kept tearing my bed apart looking for bed bugs I was sure DH was bringing home from business trips!

When I read it could be a sign of celiac disease, I started the diet immediately. My rash slowly healed and it doesn't come back unless I am badly glutened.

I personally think that GI is just a degree of celiac disease. I guess I really don't think that someone who is GI is really immune to damage to their body. It seems to me that they just haven't reached complete meltdown damage at this point. I am no dr so this is just my guess. I think if you're feeling crappy and going gluten-free helps, I don't care if you call it celiac disease, GI or Purple People Eater Syndrome, I'm just glad you found answers!

hi there, we are the same age and I am curious. Your reply indicates that your presenting symptom was the rash? That mirrors my experience. I have been dealing with a rsah/dermatitis since Oct 08. i have not sought treatment for it - it's been a bad year financially for us - and I would never have connected it to celiac or GI, if it weren't for my daughter's symptoms and past history.... in the last month I "connected the dots".

We are now doing our best to stay gluten free, and my rash has started to heal. I have had no pronounced gastrointestinal symptom, but the rash is getting better and better as I continue to eliminate gluten. Did you ever seek specific dx, or just dealt with it on your own? Pm me if you want.

[Kohdi]

I dont know if I am celiac or not yet, I have been gluten free for about 6 months and after another 6 months I have been advised by a doctor to try going back onto gluten as they think my intolerance could be a direct consequence of a bad accident I had last year. However I don't think I will be able to tolerate gluten again, but then fingers crossed!

My symptoms are severe nausea, stomach cramping and bowel "issues".

I went to the doctor many times and she didn't once suggest gluten intolerance, and when she went off to have a baby I was put on to another doctor who immediatly suggested gluten was the problem and sent me to a specialist. Being gluten free has made all the difference. I am hoping that I'm not celiac, because of the health problems you can get when you are older, but I tell my friends I'm celiac because they have a few friends who are celiacs and it just makes it easier to explain. Plus if you tell them you can get bowel cancer from eating gluten they are very careful about what they feed you!

Hehe I like the sound of Purple People Eater syndrome I might start calling it that!