Not Truly Celiac

[lonewolf]

I think it's great that there is all this awareness of Celiac Disease all of the sudden. I'm hoping that many of the 97% undiagnosed Celiacs get diagnosed because of all the exposure. But, silly as it sounds, I feel a bit left out. I've never been diagnosed. I found out I don't have the genes for Celiac, so I can't technically have it. So I guess I (as well as two of my kids) have non-Celiac gluten intolerance. This is okay, really, because I know that I can't have gluten and I'm not about to eat it again for any reason.

I know that there are lots of other undiagnosed or self dx'd people here, and people who have been told that they don't have Celiac even though they have all the symptoms and improved on a gluten-free diet. I had all the classic symptoms except weight loss and now get the big D with even a speck of gluten. I struggle with thyroid issues and psoriasis and have had arthritis and autoimmune kidney problems, not to mention depression and a host of other things you all have been through too. Since going gluten-free, I only deal with the occasional glutening, thyroid and psoriasis - I feel very healthy otherwise.

There is a point to my rambling. I wonder how many people are out there like me (and several of us here) who would test negative and be told that they don't have Celiac, so go ahead and eat gluten. How many people are going to take the test at celiac central, recognize their symptoms, and then be told by a doctor that it isn't Celiac? And how many of them are going to look elsewhere for their answers and not even try going gluten-free? Really, I'm glad that more people are being diagnosed, but I wonder about the others, who should get some type of diagnosis, but won't.

It's late, maybe I'm not even making sense. Does anyone understand what I mean? I guess what I'm really looking for is a way to diagnose non-Celiac gluten sensitivity and help the large number of people who suffer from it.

[Ursa Major]

You could always get the gene test from Enterolab, as Dr. Fine tests for two gluten sensitivity genes most other doctors haven't even heard of yet. Eventually (hopefully soon) he'll be publishing his research, and others will recognize the validity of it, and start testing for those genes as well.

I have no idea if I would officially be diagnosed with celiac disease or gluten intolerance if I'd go for official testing. It doesn't really matter, because I know gluten makes me awfully sick, and don't care whether any doctor agrees with me (actually, both my GP and my naturopath consider me officially celiac, based on symptoms and dietary response).

[georgie]

A friend of mine tested positive to the blood test but negative to the biopsy so the Dr told her she was OK. I urged her to read some more but she probaby hasn't. She hadn't the last time I met her. What is really weird is that she does gluten-free for her husband as he is GI.

[Nantzie]

I worry about this too. I'm "only" gluten intolerant. The "only" included D so bad I was scared to go anywhere because it was happening all the time, horrible gas, headaches, irritable, and pain so bad that I was actually planning on asking for a handicapped placard for my car, but I found out about celiac instead.

I have many people on both sides of my family that probably have gluten intolerance. But I'm afraid to mention it because I don't know if they would even believe me, or if they would go to their doctors, get tested and find out that they are negative. And that's assuming that their doctors have even read an article on celiac at all in the last few years. I also barely know any of them because of unfortunate family dynamics, so my opinion wouldn't be worth much more than that of a stranger. I've thought about putting out a form letter to mail to everyone, which I want to do soon. I am hoping that public awareness will start really growing so it wouldn't sound like I was some sort of whacko.

I just don't want to bring this up, have these people test negative, and then them just have that box checked off in their mind. - Checked for celiac. Negative. Next please.

One of my cousins was actually diagnosed with MS, so I need to at least get this information to her. But it's hard to know what the reaction will be. I had a lot of bad response with my husband and in-laws at first (my only family at this point in my life). So I'm really gun-shy. But then I keep thinking about my cousin, and thinking maybe it's been just gluten all these years.

Nancy

[Guest cassidy]

My blood test was negative however my doctor agreed I have celiac based on how well I did on the diet. He even wrote a letter for my job. I talked to a geneticist when I got pregnant because I was concerned about my baby getting it. I told her my blood test was negative so maybe I have gluten intolerance and not celiac. She said they are on the same spectrum and it doesn't make any difference for the baby, just like it doesn't make any difference on what type of treatment we receive.

I was very sick for years and years before going gluten-free so I don't think that the blood work response is at all related to how sensitive you are or how sick you were. I am one of those people who can't have a crumb and get sick from things on shared equipment, so I'm definitely not less sensitive because I don't have celiac.

It is frustrating that doctors may tell people that they don't have celiac because their blood tests are negative. Whenever people come on the board wondering if they have it and they are in the middle of testing, I always recommend trying the diet. It would be a shame if someone just moved on and kept struggling to figure things out just because a doctor told them they didn't have this.

[Guest nini]

yeah, this is my argument too... Celiac is only ONE manifestation of the larger issue of Gluten Intolerance, but Celiac is the only thing getting the attention right now. My daughters blood work was negative, her gi said that she couldn't possibly have it, yet she improved dramatically on the diet. I was dx'ed with positive blood work and positive dietary response but no biopsy, does that make me any less Celiac? Yes, according to my daughter's gi because "mother didn't have biopsy proven Celiac" they wouldn't even consider it for my daughter. If I had listened to him and continued to feed her gluten, she would look like that kid in the CNN story. Yep, she was already starting to look that way with the bloated belly, skinny arms and legs and no butt... but they wouldn't even consider it because I didn't have biopsy proven Celiac and her bloodwork was negative. My husband argues with me that there may be something else WORSE wrong with us but the gluten was just masking it... then why was my blood work so highly positive? Why did both of us respond so dramatically to the diet?

[Jestgar]

I found out I don't have the genes for Celiac, so I can't technically have it.

I'd like to point out that you don't have the known genes for Celiac.

[Guest nini]

I'd like to point out that you don't have the known genes for Celiac.

exactly. they have not yet discovered ALL the genes for Celiac. There are biopsy proven Celiacs that do not have either of the known genes. This science is still new, it is not infallible. The Dr.s that are saying it is cut and dried either you have it or you don't are missing the boat. There are no absolutes with this in regards to everyone must have X genes or everyone must have X symptoms or everyone must have X damage in order to be Celiac.

[spunky]

I am only self-diagnosed too, because I absolutely cannot stand doctors because of previous experiences with them, about 20 years ago. It took me 13 or 14 years to diagnose myself and finally get to the gluten free experiment, which I've been doing only 9 months now and have totally changed my life around...and I guess if I HAD gone to a doctor I probably would've been sent through some battery of expenisve, invasive testing that resulted in misdiagnoses (Dr. Green mentions on the first video how even gastroenterologists don't think of celiac) and probably just given steroids or whatever to calm a raging gut and go on eating anything and everything...so I try to think that I am probably better off with my own fumbling diagnosis.

However, yeah, I DO feel kind of necessarily silent, since I don't know if people will believe me when I say I came to this realization on my own. We are all supposed to be so much stupider than doctors, ya know! So I don't mention to most relatives that I think I see hints of this in many people...I don't think they would believe me, and I'm sure they wouldn't want to hear it. I have no objective proof for anybody to see but myself.

As Ursula says, I don't even care if they would or would not find the "necessary" gene, or the obvious damage, or whether I would test negative...I've heard that many doctors who are alert to this consider the most reliable "test" the actual way a person heals during that first gluten free year. So, that's the diagnosis I'm personally happy with, because I've got my health back, finally. It didn't cost me a dime, invasive tests, misdiagnoses, or strong drugs...it did take me quite a bit of time, though.

I'm just wondering if gluten intolerance, as Nini suggested, really is just another leg of celiac...that there are so many variants, our individual bodies, genetic makeup, whatever, struggle to keep going somehow in the face of daily toxins ingested, that there just isn't a good, precise way to name this disease, let alone diagnose it.

And then I have wondered, too, about the 97% who need a diagnosis, will be laughed at, misguided by their physicians (who won't know what the heck is going on with the sudden demand for celiac tests!), and then sent on their way still suffering, still diagnosed.

Still, though, as long as it's getting airtime like this, maybe people will get smart enough to just try going gluten free for themselves and see what happens.

[marciab]

I was wondering about this too. I have been on the immune support message board and the wemove msg board telling them about my success with the diet because I want to try to help some one who has been misdiagnosed.

But, I would have believed my docs if either one of them had told me that there was no way I was a celiac if I had not reacted positively to the gluten free diet.

People are being convinced that they have CFS, myoclonus, etc. and all they can do is take drugs.

Lets hope others will try the diet too. I hate to think people are out there suffering when the answer is soooo simple ...

Good post ... Marcia

[Mountain Mama]

yeah, this is my argument too... Celiac is only ONE manifestation of the larger issue of Gluten Intolerance, but Celiac is the only thing getting the attention right now. My daughters blood work was negative, her gi said that she couldn't possibly have it, yet she improved dramatically on the diet. I was dx'ed with positive blood work and positive dietary response but no biopsy, does that make me any less Celiac? Yes, according to my daughter's gi because "mother didn't have biopsy proven Celiac" they wouldn't even consider it for my daughter. If I had listened to him and continued to feed her gluten, she would look like that kid in the CNN story. Yep, she was already starting to look that way with the bloated belly, skinny arms and legs and no butt... but they wouldn't even consider it because I didn't have biopsy proven Celiac and her bloodwork was negative. My husband argues with me that there may be something else WORSE wrong with us but the gluten was just masking it... then why was my blood work so highly positive? Why did both of us respond so dramatically to the diet?

I don't understand this! My ds has been tested twice for celiac, the first time noone in the family had been diagnosed with it at all. The second time I had been diagnosed and a cousin also. I can't believe that dr!

[Guest nini]

I don't understand this! My ds has been tested twice for celiac, the first time noone in the family had been diagnosed with it at all. The second time I had been diagnosed and a cousin also. I can't believe that dr!

I can't believe that dr. either... and I'm extremely frustrated with him. His partner I like, but him, forget it. The really stupid part is that this Dr. and the partner I like, are the founding Dr.s of our local Raising Our Celiac Kids Chapter, and they just spoke Monday night at our meeting... (I missed it because of work) but I really wanted to go and ask him why they are still clinging to the biopsy as gold standard of dx, when positive dietary response is such a powerful indicator?

[Mountain Mama]

wow! I can't believe they are the founding Dr's of your local Raising Our Celiac Kids Chapter! You would think they would know better. Since soooo many people have celiac, what is it, one in 133 or something? They should just tell everyone to be gluten-free and everyone would feel much better and the world would be a much yummier place for us! lol

[Guest nini]

wow! I can't believe they are the founding Dr's of your local Raising Our Celiac Kids Chapter! You would think they would know better. Since soooo many people have celiac, what is it, one in 133 or something? They should just tell everyone to be gluten-free and everyone would feel much better and the world would be a much yummier place for us! lol

you would think... like I said, one of the Dr.s is ok, the other one, not so much, unfortunately my daughter saw the one that is not so much! LOL... The other Dr. is much easier to talk to and he admits they are learning more about Celiac from their patients than the other way around.

[jukie]

I think it's great that there is all this awareness of Celiac Disease all of the sudden. I'm hoping that many of the 97% undiagnosed Celiacs get diagnosed because of all the exposure. But, silly as it sounds, I feel a bit left out. I've never been diagnosed. I found out I don't have the genes for Celiac, so I can't technically have it. So I guess I (as well as two of my kids) have non-Celiac gluten intolerance. This is okay, really, because I know that I can't have gluten and I'm not about to eat it again for any reason.

My husband has responded very well to my gluten free diet, but “only” has gluten intolerance genes so thought he didn’t have to be as careful as me…that was until his first major dose of cross contamination. His reaction was no less intense than anyone with “officially” diagnosed Celiac. On the other side of the diagnostic coin, I personally know a biopsy-positive Celiac who tested negative on the blood panel *and* the genes, so the doctors definitely haven’t figured it all out.

I guess what I'm really looking for is a way to diagnose non-Celiac gluten sensitivity and help the large number of people who suffer from it.

I remember reading somewhere that the average time to diagnosis is 11 years…ELEVEN YEARS!!! Dr. Green mentioned that Celiac is primarily an adult disorder (isn’t the average age of diagnosis between 40 and 50?), but that’s largely because the U.S. doctors just don’t get it. That’s why Dr. Fine is such a proponent of early diagnosis, before the villi are gone. That’s why forums like this (and people like you) are sooooo important! It’s not a competition – we are all on the same team. It is our collective voice – whether “officially” diagnosed or not – that will continue to drive home the point that Celiac truly is just the tip of the gluten intolerance iceberg.

So don’t feel left out, and more importantly, don’t stop sharing your story – because that’s exactly how we’re going to reach those people who are still undiagnosed or misdiagnosed!

[BamBam]

I am self diagnosed after years and years of tests with no end test results. I was told it was all in my head or it's IBS or it's stress. I'm so sick of doctors that I just take care of myself. I am the only one that knows my body and what it can and can't have. I am gluten free and dairy/casein free. It is so important that I stay away from these things for me to feel good. I do not need a doctor to tell me these things. When I do see a doc, and I need to take some meds, I request gluten free ones. To me, in my area of the world, the doctors are clueless!

BAM

[oceangirl]

I am self diagnosed after years and years of tests with no end test results. I was told it was all in my head or it's IBS or it's stress. I'm so sick of doctors that I just take care of myself. I am the only one that knows my body and what it can and can't have. I am gluten free and dairy/casein free. It is so important that I stay away from these things for me to feel good. I do not need a doctor to tell me these things. When I do see a doc, and I need to take some meds, I request gluten free ones. To me, in my area of the world, the doctors are clueless!

BAM

Hi!

I wanted to add that while I have been tested positive for 2 of Dr. Fine's gluten sensitivity genes and have a very positive response to the gluten-free diet, my Gastro wouldn't diagnose celiac because of an inconclusive biopsy as well. This was after 3 months gluten-free and positive bloodwork while gluten-free!

However! I just saw my regular physician yesterday and I'd like to say I love her now because she completely sees and believes in gluten sensitivity without a positive biopsy and was SO helpful and understanding. I was so reassured. She is now helping me find a good dietician and doing necessary follow-up testing. So there are some decent doctors out there who have more open minds. We do really need Dr. Fine to publish his research and others to corroborate it. In the meantime, I'll keep chatting up celiac and gluten-intolerance!

Good post!

lisa

[tl2277]

when it takes 11-13 years on average for doctors to diagnose celiac, and so much about celiac, gluten intolerance, and gluten sensitivity is still unstudied and unknown, i don't think anyone has a leg to stand on for not crediting people with diagnosing themselves based on something that actually succeeds in making them feel better. i have been reading about disability studies, and it is amazing how long patients have been complaining about doctors discrediting what patients KNOW about their bodies. something needs to change.

if your doctor doesn't respect your intuition or what you know to be true about your body... find a new doctor and let them know why they are losing your business. find doctor rating forums on the internet and put an honest, but not hostile, report of how you were treated, so those coming behind you can benefit from your search for a good doctor. in the case where one doctor in an office is good and one is not, and i have been there, demand to see the good one.

let's all agree to edumicate as many people and doctors as we can!

[jayhawkmom]

My daughter and I fit this category.

We both had 1 of 4 (very) positives on the blood tests.

3 of the 4 were the top level of the normal reference range.

Both of us had "issues" in the duodenum (hers more severe) - but neither of us had villi damage. Therefore, no dx for either of us.

We are both gluten-free. And, since she went on the gluten free diet in June, she's gained 6 lbs and grown 3 inches. She's still VERY tiny.... but, she's starting to catch up, finally.

It doesn't matter to me, at all, that neither of us are officially diagnosed. We are doing what "feels" best based on trial and error. THe gluten free diet makes both of us feel MUCH better. And, has improved my daughter's health exponentially.

[zansu]

My fist gastroenterologist said OBS on the first (and only) visit.

The second teated my GERD and looked for a diagnosis for the intestinal stuff. He did a biopsy when he was doing an endo for the GERD. Luckily he didn't tell me so I didn't "know" I didn't have celiac.

My new GP, still fresh out of residency, suggested I try a gluten elimination. She said (2+ years ago) that labs didn't do the tests often enough, that they were expensive and not that accurate, therefore a waste. I went gluten-free and was 15 lbs lighter and infinitely better in just 3 weeks. When I idiotically did a gluten challenge (I ate spelt), I was miserable. so, officially I am undiagnosed, but you could not pay me enough to eat gluten.

[melhen1]

I think it's great that there is all this awareness of Celiac Disease all of the sudden. I'm hoping that many of the 97% undiagnosed Celiacs get diagnosed because of all the exposure. But, silly as it sounds, I feel a bit left out. I've never been diagnosed. I found out I don't have the genes for Celiac, so I can't technically have it. So I guess I (as well as two of my kids) have non-Celiac gluten intolerance. This is okay, really, because I know that I can't have gluten and I'm not about to eat it again for any reason.

I know that there are lots of other undiagnosed or self dx'd people here, and people who have been told that they don't have Celiac even though they have all the symptoms and improved on a gluten-free diet. I had all the classic symptoms except weight loss and now get the big D with even a speck of gluten. I struggle with thyroid issues and psoriasis and have had arthritis and autoimmune kidney problems, not to mention depression and a host of other things you all have been through too. Since going gluten-free, I only deal with the occasional glutening, thyroid and psoriasis - I feel very healthy otherwise.

There is a point to my rambling. I wonder how many people are out there like me (and several of us here) who would test negative and be told that they don't have Celiac, so go ahead and eat gluten. How many people are going to take the test at celiac central, recognize their symptoms, and then be told by a doctor that it isn't Celiac? And how many of them are going to look elsewhere for their answers and not even try going gluten-free? Really, I'm glad that more people are being diagnosed, but I wonder about the others, who should get some type of diagnosis, but won't.

It's late, maybe I'm not even making sense. Does anyone understand what I mean? I guess what I'm really looking for is a way to diagnose non-Celiac gluten sensitivity and help the large number of people who suffer from it.

I think it's great that there is all this awareness of Celiac Disease all of the sudden. I'm hoping that many of the 97% undiagnosed Celiacs get diagnosed because of all the exposure. But, silly as it sounds, I feel a bit left out. I've never been diagnosed. I found out I don't have the genes for Celiac, so I can't technically have it. So I guess I (as well as two of my kids) have non-Celiac gluten intolerance. This is okay, really, because I know that I can't have gluten and I'm not about to eat it again for any reason.

I know that there are lots of other undiagnosed or self dx'd people here, and people who have been told that they don't have Celiac even though they have all the symptoms and improved on a gluten-free diet. I had all the classic symptoms except weight loss and now get the big D with even a speck of gluten. I struggle with thyroid issues and psoriasis and have had arthritis and autoimmune kidney problems, not to mention depression and a host of other things you all have been through too. Since going gluten-free, I only deal with the occasional glutening, thyroid and psoriasis - I feel very healthy otherwise.

There is a point to my rambling. I wonder how many people are out there like me (and several of us here) who would test negative and be told that they don't have Celiac, so go ahead and eat gluten. How many people are going to take the test at celiac central, recognize their symptoms, and then be told by a doctor that it isn't Celiac? And how many of them are going to look elsewhere for their answers and not even try going gluten-free? Really, I'm glad that more people are being diagnosed, but I wonder about the others, who should get some type of diagnosis, but won't.

It's late, maybe I'm not even making sense. Does anyone understand what I mean? I guess what I'm really looking for is a way to diagnose non-Celiac gluten sensitivity and help the large number of people who suffer from it.

I was just dignosed in April and I have a sister who suffers from many of the same symptoms that I had. She went and had the blood test and it came back negative, so her doctor said she didn't have to eat gluten free. I explained to her that she may not have celiac, but she may still be gluten intolerant. She refuses to even try eating gluten free to see if she would feel better, but I bet she is like you. But her doctor, being a GP probably doesn't know enough himself to have recommended she try eating gluten free, just in case she had gluten intolerance. So I agree with your concern. It may be an education issue for doctors to understand that negative celiac test doesn't necessarily mean you don't have a gluten problem.