Do Any Biopsy-positive Celiacs Get Offended When Someone With

[Nantzie]

I refer to myself as celiac when I'm talking to people outside the "celiac world". I also refer to myself as celiac on this board unless we're actually discussing celiac vs. non-celiac gluten intolerance. For one thing, it's easier to type.

Personally, I think that this board is living proof that there are at least a few variations of celiac, if not several. Some just have positive biopsies and some don't. Maybe someday rather than celiac vs non-celiac, it will be Type 1 Celiac, Type 2, 3, etc.

I contacted a local support group a few months ago asking about their group. She asked me how I was diagnosed and I told her that the blood and biopsy were negative, but I had the classic GI symptoms along with painful mobility issues which all went away with the gluten-free diet. She just kind of got cold after that, as if she thought I wasn't "celiac" enough. I asked her to send me information on the group, meetings etc., and I never got anything from them.

Of course that has always bothered me. Not so much that I didn't get the info I asked for, there could be a bunch of simple reasons why that happened. But once I said I was biopsy negative it was like oh, she's just ... (fill in the blank).

So I just wondered how everyone felt about this. Celiac vs. non-celiac and also presenting oneself with the label of celiac even though it's not technically true.

Nancy

[2kids4me]

since the *treatment* (diet) for both is gluten free, then I consider them one in the same in terms of support for diet, symptoms etc. There is still more to learn [about both issues], and I guess one is autoimmune and can carry the risk of other autoimmune issues - then the celiac would need info about that...but the gluten intolerant needs info too!

I think the person who answered your call missed the mark completely. You were seeking support and info - even if, lets say you were someone without any gluten issues but had a family member or friend with celiac and wanted to be come informed so you could feed them appropriately - that is reason enough to send you info ..IMHO

A gluten intolerant person needs the SAME support.

Myself - I tested negative, both kids are celiac and we are gluten free at home but for the first time in about 6 months, I went for lunch and had sandwich and soup - loaded with gluten....holy crappola - I bloated up like a balloon and belched /passed gas for 12 hours. I think that makes me gluten intolerant, dont you? I would have been disappointed ot say the least if I had then phoned for suport and got the cold shoulder.

Sandy

[chewymom]

Don't some doctors say that positive dietary response is proof enough? Seems if it's good enough for a doctor, it should be good enough for a celiac group!

[Guest cassidy]

I had negative blood work as well but I always say I have celiac. I agree that it is easier to just say that that then go into gluten intolerance or the differences between it. Also, if you are trying to prove a point about how you need special food I think it sounds more "dangerous" to say celiac. An intolerance to people who don't understand may just sound like a mild thing that isn't a big deal. I don't think it is completley understood (or at least I don't completely understand) the difference in terms of damage and genes and I don't think it makes a pracatical difference.

Did you try contacting them again? I'm sure these people have a lot going on in their lives and maybe someone just forgot to send it to you. I would give them the benefit of the doubt and try to get the paperwork again. If that woman really thought you weren't worthy of the group, maybe she is the only one with that opinion. Also, you don't have to tell anyone what medical tests you have had so if they ask again maybe you can just gloss over that question.

[Canadian Karen]

I don't consider any difference between the two. I also believe in your theory about different "levels" of celiac, and I also believe they have not identified all of the genes that cause it yet either. I think there is much more to be discovered in regards to how gluten poisons us all......

That woman sounded like you needed to "fit the criteria" to join their group. What a joke! She was acting like your intestines have to resemble the inside of a garden hose before you can "join their club". Sounds like kids at school, if you ask me.

Don't worry - we accept all here - those officially diagnosed, those self-diagnosed, and those who were told they didn't have it but improved greatly on the diet. All are welcomed here and are equal contributors to this forum. I for one couldn't care less whether you "have a doctor's note" to verify celiac or not!

Hugs!

Karen

[jerseyangel]

I tend to think of "different levels", too. I consider us all in the same boat here--but this isn't the first time that I've heard that a support group used the "biopsy proven" label to admit members. This I don't understand.

If someone has a problem with gluten and they request help, I think it's terrible that they would deny assistance based on a biopsy result. Sounds like a "club" I wouldn't want to be a member of, anyway

[Guest nini]

I'm not a "biopsy proven Celiac" either, but my bloodwork was highly positive and my dietary response was nothing short of miraculous and according to MY Dr. it is Celiac, my daughter's blood work was negative, she didn't have the biopsy and her gi said that she couldn't possibly have it because blood work was negative and they wouldn't even consider it because "mother didn't have biopsy proven Celiac" what a crock. Her dietary response was undisputable and I will never intentionally feed her gluten and she won't intentionally eat it because she remembers how bad she felt. Are we any less Celiac?

[Saz]

I agree with what others have said - celiac or gluten intolerant, both end in the reasult, not being able to eat gluten.

When I have to explain my food needs to someone , I simply say I am allergic to/ can't have gluten.

I know that many years ago, a lot of organisation believed that the only true celiacs were dx by biopsy, however I think this has changed now.

The other thing is, I have heard of tons of people who now try to limit their intake of bread, pasta etc because it makes them feel bloated, or just not good. I think this is more of wheat allergy tho as it is manily breads and pasta etc. Maybe the lady had a lot of people like this calling up. This by no means gives her an excuse to be rude to you tho.

Def. try and ring again, maybe she just lost your info, or was really busy.

[rinne]

If a local group is important to you then I would try again, sometimes the volunteers who take on jobs like that take themselves a little too seriously but it could also be that your name was written on a piece of paper that got misplaced.

If it doesn't work out you could also try to start a group, maybe there are others that were turned away for not being Celiac enough. How silly is that?

My sister and now my brother have been diagnosed with Celiac through biopsy, I haven't had one, nor do I intend on having one. Our Kaiser Canada medical system scheduled an endoscopy for five months after I had gone gluten free and I couldn't see any point in having it done. Being gluten intolerant or Celiac is only part of my problem though, I have Lyme disease.

These days I'm wondering if I get the Lyme disease under control what my reaction to gluten will be? I have no intention of ever eating it again but it would be nice not to suffer for the least amount of cross contamination.

[par18]

I really don't see a difference between the two. I had a positive biopsy but if I could turn back the clock I would have done the diet long before I ever got sick. The positive diagnosis to me means only one thing and that is I had to get sick as hell to find out what was wrong. The main reason I joined a support group was to try to help someone new avoid all the bad symptoms that come as the result of untreated Celiac/gluten intolerance. When I had my follow-up blood test this past summer my levels were so "normal" (negative) that I would not be considered Celiac/gluten intolerant if a new doctor saw them for the first time. To me there are two types of people, those that were diagnosed like me and those who saw the light sooner and will never be. I would not feel uncomfortable calling both persons Celiac because both are on the diet and are doing well. As far as I am concerned you are as much a Celiac as I am. Also you probably will get better health insurance rates but that is a topic for another discussion.

Tom

[tl2277]

I find it sad that doctors and others need this "standard" when from what I have read the only reason they push for a biopsy is because the diet is so difficult and they find that many patients won't stick with it unless they have that "proof positive" they cant deny. I think feeling so much better that you are willing to stick with such a diet should be proof positive for others.

But then, I don't have the gold standard either. I was told by a chiropractor (I was seeing as a last resort before looking into filing for disabilty) to avoid gluten and the results were life changing. By the time I'd read about the whole biopsy issue, I'd been off gluten for about 6 weeks. I called a gastro to set up a test, but they wouldn't do it.

At that point, I just told people I was gluten intolerant, and that it made me very sick. But I found Enterolab several months later and had the gene test. So I know I have the gene for celiac, I KNOW I react to gluten, and I know from the gluten mistakes I have made that you couldn't pay me enough to consider going back on gluten. For me, that's enough to call it celiac.

But isn't this supposed to be about the patient and making the patient healthy? From what I have read by those actually studying this, there's evidence that non-celiac gluten intolerance can lead to all the same deadly and debilitating secondary condititions, so what's the difference?

[weathertopmama]

Maybe some people are just really, really competitive I think that is so bizarre.

My boys all had positive blood work, but like nini said the dietary response was nearly miraculous. And has also been mentioned, the treatment and 'cure' is the same.

Celiac snobs! Who'd have thought?

[2Boys4Me]

Yes. And in fact, I think all biopsy proven celiacs should carry lab work with them to prove they are better than you. Of course I'm kidding.

Ty is a biopsy proven celiac but there is a teacher at school who a different teacher referred to as celiac. When I spoke to her, I said something like I heard you have celiac, if you have some good recipes I'd love to have them. She then said she wasn't celiac, but gluten intolerant. To me, it amounts to the same thing. Neither can consume gluten. Other than her, I haven't run into anyone else with celiac disease/gluten intolerance in real life, but I know an awful lot of "my husband, my cousin, my friend, my mother-in-law, my insert relationship here".

[Nancym]

I don't call myself Celiac although oddly, my Doctor has that in my files. I presented him the info I got from Enterolab and from then on he decided I had "Sprue". I think it is rather odd the woman asked how you were diagnosed. When I attended the one meeting in my area they didn't care and I think I heard from others who were also "gluten sensitive".

[spunky]

I'm glad that attitude doesn't prevail on this board, because I feel at a time when I really needed answers and guidance, even lurking here for several months pretty much saved my life, so to speak. Since I didn't actually know for a fact what was wrong with me, I didn't feel I should post until I was certain the diet was making me well again.

I never ask doctors for help...so I'm not any sort of "proven" celiac, and don't really care. For the sake of simplicity, I call myself celiac when I'm in a situation where I gotta explain.

[Canadian Karen]

It's really a shame that people really can't look at the big picture.....

The more people who approach celiac support groups, even though they don't have the "official" diagnosis, but still have a problem with gluten, the more people who are going to come into the fold and join the gluten free revolution. This will result in more gluten free products at a cheaper price. Long term, converting as many people as possible is to our gain...... Too bad the "Celiac Snob" can't realize that.......

Karen

[Mountain Mama]

Hi new here and thought i would chime in. I am a biopsy diagnosed celiac. When someone tells me they think they are celiac but have not been diagnosed I always tell them they should try to get diagnosed before they go on the gluten-free diet. The reason I give them is because there are so many other health issues someone with celiac has to look out for. Testing for osteoperosis being one of them. Also, checking vit levels and such. I am severly anemic from my celiac and low in other nutrients like so many others.

As far as the gluten intolerance goes, I do not consider that the same thing as celiac. Correct me if I am wrong, but I have a few friends who say they are gluten intolerant, diagnosed by a dr too. They stay away from gluten for the most part but eat it when they want to, and they just take a digestive enzyme tablet with it. If you have celiac, you cannot take a supplement and eat gluten when you wish, so I see them as very different illnesses. Perhaps I am misled, but this is what my friends do and their dr's told them to do. When they heard I had celiac they told me they would give me the name of the supplment so I could eat that too. They didn't understand celiac is different and you cannot have any gluten at all, even with a supplement.

I like to give people the benifit of the doubt, and perhaps that cranky lady on the phone was having a bad day and had just had to deal with someone who told her they were gluten intolerant but could eat it occasionally with a digestive enzyme! lol

[Creative-Soul]

"Celiac disease, also known as gluten intolerance, is a genetic disorder that affects 1 in 1331 Americans. Symptoms of celiac disease can range from the classic features, such as diarrhea, weight loss, and malnutrition, to latent symptoms such as isolated nutrient deficiencies but no gastrointestinal symptoms. "

Anybody recognise that from the home page of this site?

My doc., bless his soul, diagnosed me as Celiac on the basis of my elimination diet/gluten challenge. What I'd love to ask some of these "experts" out there is, what happens to all of those un/misdiagnosed people who can't afford (like me) to get all the tests and biopsies done? Are they to be screwed over because they don't have the "stamp of approval"? Sorry...this is the main thing that ticks me off... Diet really needs to be recognised by everyone as a valid diagnostic tool. I say I'm Celiac; it just simplifies things that are complicated enough already. We may have varying symptoms, etc, but are affected by the same thing. I feel different enough as it is, and don't need to feel that way when it comes to being among others who are going through the same thing too. As a Newbie, this is one of the things that gets me down and frustrated sometimes...

[spunky]

It kinda frustrates me when my intolerance, celiac, or whatever it is that makes me sick when I have gluten and well when I don't, seems to not be taken seriously or believed just because I found it out myself, without doctors or diagnositic tools.

That gets frustrating. My husband thinks I'm nuts, but at least he is supportive and tries to help me out. His support is what matters to me most, but others just roll their eyes like I'm some kind of hypochondriac or lunatic. I think I've seen Ursula call it something like "permission" from a doctor...like that's what I don't have to make it legit...I don't have a doctor's permission to be celiac, gluten intolerant, or whatever you wanna call it. Can get a little frustrating!

[AndreaB]

I consider celiac and gluten sensitivity pretty much the same thing. Some gluten intolerances would progress to levels of damage to diagnose celiac, others would develop into many other problems but may no have the intestinal damage to gain a positive biopsy.

For myself and my family, I went very gluten lite after ELISA testing and by the time I had enterolab testing done for the family I was starting to react to barley and/or oats. Enterolab showed everyone in my family with one or two celiac genes. For us, since our numbers were low, I could easily say we have gluten intolerance as we weren't to the point of damage to be diagnosed celiac. How am I to know which gene is the one that is activated. I would assume the celiac gene. Doesn't really matter to me. Our whole household is gluten free and will remain that way no matter what we call ourselves.

[SchnauzerMom]

Both celiac and gluten intolerance are taken care of through diet. It seems to me that it wouldn't matter if you were "officially" celiac or not. Now if there was a medicine for it then you would need a doctor. I'm on a gulten free diet and I've never been diagnosed. I'm trying to avoid having to go to a doctor.

[Mountain Mama]

It kinda frustrates me when my intolerance, celiac, or whatever it is that makes me sick when I have gluten and well when I don't, seems to not be taken seriously or believed just because I found it out myself, without doctors or diagnositic tools.

That gets frustrating. My husband thinks I'm nuts, but at least he is supportive and tries to help me out. His support is what matters to me most, but others just roll their eyes like I'm some kind of hypochondriac or lunatic. I think I've seen Ursula call it something like "permission" from a doctor...like that's what I don't have to make it legit...I don't have a doctor's permission to be celiac, gluten intolerant, or whatever you wanna call it. Can get a little frustrating!

I do believe people can diagnose allergies and intolerances on their own. I mean, what is the elimination diet so many dr's perscribe for? They don't know what is wrong so they say try this and if it makes you feel bad then don't eat it. I think the reason I tell folks to try to get a diagnosis is because I am a newly diagnosed celiac, and all these other health problems area bit frightening. And I already have graves disease. I would hate for someone to never get the other things checked out like the osteoperosis etc and then find out they have major bone loss later that could have been treated. Or they had thyroid disease and didn't know it. I know you can know you have a gluten intolerance, if you eat it you feel like crap, if you don't, you feel fantastic. I just worry folks will have celiac and not get these other things checked out and have things that need to be treated. I just want everyone to be healthy and happy! lol

[Rachel--24]

These days I'm wondering if I get the Lyme disease under control what my reaction to gluten will be? I have no intention of ever eating it again but it would be nice not to suffer for the least amount of cross contamination.

Rinne, I'm in the same situation as you except that I dont have any family members with Celiac and I've been tested and dont carry a Celiac gene. I dont think I could possibly have Celiac so all I can do is wonder what would happen if the Lyme symptoms went away...would I react to gluten??

Maybe at that point I'd be able to determine how much gluten affects me.

All I have are my Enterolab results with everything being positive for gluten intolerance including the tTG. I dont know how valid the test is but I'll stay off gluten anyway.....dont want any more problems than what I've already got. Without a Celiac gene I'm less worried about cc....so I probably wont worry about every speck....unless I'm having obvious reactions.

At first I called myself Celiac because thats really what I thought I had....Celiac. I dont call myself "Celiac" anymore....I consider myself gluten intolerant so thats what I tell people. It really doesnt matter what I say because people dont have a clue what I'm talking about regardless.

Now I just say that I have Lyme Disease and cant eat alot of foods....people seem to *get* this.

I guess I'm in the minority because if I call myself Celiac I feel as if I'm being dishonest...it bothers me. I suppose if I had a complete resolution of all symptoms once I went gluten-free.....even without having a main gene...I would feel more comfortable calling myself Celiac. It didnt happen that way because I have Lyme Disease so I really dont know how much going gluten free has contributed to my overall health/recovery. For now I just have a piece of paper with positive numbers and the advice to stay off gluten for life.

I dont think those Celiac snobs at the support group are very "supportive" at all. I would LOVE to tell them what I think of their snobby group.

[Gamecreature]

Gee, I'd be happy just to find a support group to snub me.

Sometimes I wonder if I'm the only one in the county who has it.

[almostnrn]

I don't think it matters if you are celiac or gluten intollerant. The results are all the same...a lot of stuff in this world makes you sick because it contains gluten. In my mind it would be like trying to tell a type II diabetic that they are less of a diabetic than a type I diabetic because they developed it later in life! Actually now that I think of it I have heard that argument, lol. I guess I am one of the lucky ones who was diagnosed very quickly, not because of how sick I was (I wasn't at all) but because of my DH. I have since tested positive by bloodwork and biopsy. Honestly though if I had know how sick I was going to get by going back on the regular diet for the biopsy I probably wouldn't have done it...it just wasn't worth throwing my entire summer away. Finally, I usually just tell people I have an "allergy" to wheat. I find it works a lot better than getting that deer in the headlights look when I say the words celiac or gluten free. So go ahead call yourself whatever you want, what is easiest for you to explain or get the best response to...in my mind its all one in the same!