Why Is Endoscopy Still "the Gold Standard"?

[jacflash]

I am new to the world of Celiacdom and the whole online culture of the community. Please forgive me if this is a silly or offensive question; it is meant sincerely.

In light of the very high accuracy of the tTG test, and in light of studies showing that a tTG over 30 is 100% indicative of celiac disease except under clearly-understood circumstances, why do people still insist on a biopsy? In 3-4 days of scanning online forums I've repeatedly seen biopsies referred to as "The Gold Standard" (caps and all) and even a couple of folks who refer to themselves as "Gold Star Celiac", like it's a status symbol.

Now, if I were the executive director of The National Association for the Financial Enrichment of Gastroenterologists, I'd love this sort of mindset-establishing branding. But as someone who has probably had undiagnosed celiac disease for decades, who got a 59 on the tTG, who is probably facing a 'scope in a few weeks, and who is -- and this is the real reason I ask -- REALLY reluctant to inflict scopes on his 9-yr-old and 6-yr-old sons who probably also have it, what's the point? What useful, relevant info does the biopsy consistently deliver that a high-positive tTG plus several months on the diet wouldn't? Why should I do this to my kids?

[Jestgar]

My personal opinion is: don't.

What you and your family choose to eat is your business. If you find that your kids are still not feeling well after a few months on the gluten-free diet, then you can reconsider a biopsy, otherwise (again, opinion alert) why subject them to something so barbaric as cutting out pieces of their bodies to prove to some yahoo that they feel bad when they eat gluten?

[rinne]

I agree with Jestgar.

I never had a scope and now that I have learned of the risks associated with it I never will, of great concern to me is that they cannot guarantee that the scopes are sterile. There are cases of people getting ill from the procedure itself.

What astonishes me is that in order to receive that "gold standard" they want you to continue to damage yourself sufficiently so that they can see it and even then there is no guarantee that they will find it even though it may be there.

You are correct as far as the blood work goes and I can only guess that the reason many do the test is because they believe in doctors.

[RiceGuy]

I agree that it seems pointless. Perhaps they want to do it because they tend to disbelieve in the prevalence of Celiac, or maybe they just like to fatten their wallets.

But whatever the reason, to ask anyone to purposely damage their intestines, and possibly far more, for several weeks at least, for a test which is iffy-at-best, truly doesn't make logical sense. It is the patient who needs the diagnosis, and if the presence of antibodies and the dietary response gives you the proof you need, that should be enough. It's like the doctor has a tough time accepting the other test results, and wants to see the physical damage with his/her own eyes.

[gfb1]

I am new to the world of Celiacdom and the whole online culture of the community. Please forgive me if this is a silly or offensive question; it is meant sincerely.

In light of the very high accuracy of the tTG test, and in light of studies showing that a tTG over 30 is 100% indicative of celiac disease except under clearly-understood circumstances, why do people still insist on a biopsy? In 3-4 days of scanning online forums I've repeatedly seen biopsies referred to as "The Gold Standard" (caps and all) and even a couple of folks who refer to themselves as "Gold Star Celiac", like it's a status symbol.

Now, if I were the executive director of The National Association for the Financial Enrichment of Gastroenterologists, I'd love this sort of mindset-establishing branding. But as someone who has probably had undiagnosed celiac disease for decades, who got a 59 on the tTG, who is probably facing a 'scope in a few weeks, and who is -- and this is the real reason I ask -- REALLY reluctant to inflict scopes on his 9-yr-old and 6-yr-old sons who probably also have it, what's the point? What useful, relevant info does the biopsy consistently deliver that a high-positive tTG plus several months on the diet wouldn't? Why should I do this to my kids?

well... tissue transglutaminase is a cytosolic enzyme that plays several roles in the body. ONE of which is its appearance as a diagnostic of celiac disease. ttg is also elevated in response to other types of tissue inflammatory processes and, sometimes, tumor formation. its job is to break down cross-linking of proteins, and does this in a variety of tissues -- ranging from the lung to the placenta to oocytes to fibroblasts to intestinal tissues.

so... most celiacs have elevated ttg-antibodies, in part because of the initial intestinal damage and in part because ttg binds to gliadin and causes a b-cell mediate response. however, it does NOT follow that all people with elevated ttg/ab's are celiacs.

btw -- as to why you should 'inflict' the test on your kids... well, it depends. are they symptomatic? have they had blood tests?? etc.etc.etc.

i should also reprise the opinion of jestgar... (and there ARE differences of opinion on this matter)... to some degree diagnoses and tests are of academic interest (and satisfy the rational portion of our brain). if being on a gluten-free diet eliminates the symptoms and there are no other problems..... why bother?

[CDFAMILY]

Hi Jacflash,

I am one that put a Gold Star Celiac only because I can say that I do not believe in biopsies and sometimes I need this reference in order to make the doctors or people for biopsies understand how unreliablable the biopsy really is.

I am sure I was a Celiac Toddler after having my first Cleft Palate operation at 18 months. From there, many stomach aches and leg pains etc.

I had many neurological complications starting in 2003 with symptoms of MS, ALS and Parkinsonism along with being previously diagnosed with ITP and Leucopenia in 1991 and Fibromyalgia a few years later. In 2004 I was diagnosed with Myasthenia Gravis by an opthalmologist. I was having extreme blood pressure problems even though I was thin and eating a healthy diet///I thought and had been exercising almost everyday. I also had what seem to be 2 strokes with risidual right sided weakness that is finally almost gone.

In March of 2005 I approached my former family doctor and asked to be tested for Celiac Disease in which she exclaimed I was just looking for a disease and needed to go on Prozac and gain 15 pounds. I looked her in the eyes and said I wake up happy every morning...I have never been depressed something is wrong for me to be so fatigued by 9AM. Then I said literature says you must test family members who have siblings with type 1 diabetes and I have 2 brothers with type 1.

Reluctantly she tested...and only tested the Gliadin IgA and IgG. For some reason she only looked at the IgG which was stranglely negative (I think I might be IgG deficient as my daughter is). So, she sends me a letter stating I do not have Celiac and to come in talk and kind of apologized. A month later I picked up my tests and found she only did the Gliadins and my Gliadin IgA was very positive.

Never wanting to go back to this doctor, I called my Neuro who then thought maybe I ate too much pasta and that is why my Gliadin IgA was so high...he did not know how to test for Celiac so sent me to a Gastro who thought immediately I had Celiac but still was fussing about insurance etc. He did the EMA and tTG test which were both very positive.

Now comes the part of the biopsy. With a positive EMA it tells you without a doubt you have villious atrophy. I did not. This is what it said:

Post-Endoscopic Diagnosis: suspicious Duodenal Mucosal features consistent with celiac disease. In the straight and retroflex views, the appearance of the duodenal mucosa was somewhat suspicious for celiac disease with scalloped mucosa.

**********

Diagnoses:

A. Biopsy of terminal Ileum

[coldnight]

i should also reprise the opinion of jestgar... (and there ARE differences of opinion on this matter)... to some degree diagnoses and tests are of academic interest (and satisfy the rational portion of our brain). if being on a gluten-free diet eliminates the symptoms and there are no other problems..... why bother?

I like this, a part of me really wants a rational answer. I know the only way they can definitively tell if your immune system is attacking your tissue is to see that damage. Going off gluten has helped me tremendously, more than anything else ever has. But some part of me would still like to know if it is REALLY Celiac disease or something else related. I've had an endoscopy before, I'm not sure how horrendous is really is, if you look at any procedure there are horror stories and risks, but those are usually not the norm. Compared to a colonoscopy, which according to most everyone should get after a certain age, an endoscopy is a walk in the park. =)

Too bad they aren't old enough to decide for themselves. I stumbled on a gluten free diet by process of elimination and eventually found myself here. If I could go back to when I was eating it and controlling it with medicine, like I had been for many years, I probably would have asked for a full blood panel and probably an endoscopy, because I would like to satisfy the rational part of my brain. Anecdotes don't count as much to that part of my brain. I mean, I logically know I feel better, but with IBS there's always something say... well maybe it's placebo, or maybe the symptoms are just changing. (Reminds me of the first IBS pamphlet they gave me, that said the weather can affect your IBS, if the weather can affect it, what can't? =])

But now that I'm off it, I'm not going back on for months and going way back up on medicine just to tell me what I already know... gluten bothers me tremendously. I would like to know specifically why, because I think that might illuminate some things, but it's not worth all that misery.

So I guess it just depends on what you can be satisfied with. That's just how I feel about it anyway.

[Rondar2001]

Ok I am going to take the other side here. I absolutely belive having a biopsy for my daughter was the right choice.

In the case of a child, there is bound to be instances where they question whether they really have Celiac or not, and they likely will not remember the severity of their symptoms as they get older (or even the symptoms themselves). Once they hit those teenage years, a definitive diagnosis by thier doctor with the tests to back it up may just be enough to help them stay a little more true to the diet. Any chance of keeping them healthy is worth the time right now.

Additionally, in some countries, having a definite diagnosis of celiac can mean some tax relief. While this doesn't seem like a big deal when they are small and may not be an issue in your country right now, what about 20 years down the road. Will they really want to do a gluten challenge to get these benefits or would they wished they had had a full diagnosis from the start.

I also don't feel that a biopsy on a child is inflicting them with a procedure. My daughter went in at 7 am and was home by noon. She had no pain afterwards and they even waited until she was asleep before putting in her IV (it was out by the time we saw her in recovery). This few hours of very low risk will give her a lifetime of knowing for sure what she has and what she needs to do.

Of course this is your choice to make, but please consider both sides of the argument.

[mushroom]

Just to be the devil's advocate, there are also celiacs whose blood tests and biopsies are both negative, but they are still celiacs. So they learned absolutely nothing from the testing, but they sure learned when they stopped eating gluten (and sometimes not eating other things besides). So, if your biopsy was negative, would you resume eating gluten and have your children resume eating it, believing in a test that has been proven to have false negatives? Or, alternatively, is often misread? Some have had so-called "negative" biopsies, which turn out to be positive when read by someone else.

[Gemini]

I am new to the world of Celiacdom and the whole online culture of the community. Please forgive me if this is a silly or offensive question; it is meant sincerely.

In light of the very high accuracy of the tTG test, and in light of studies showing that a tTG over 30 is 100% indicative of celiac disease except under clearly-understood circumstances, why do people still insist on a biopsy? In 3-4 days of scanning online forums I've repeatedly seen biopsies referred to as "The Gold Standard" (caps and all) and even a couple of folks who refer to themselves as "Gold Star Celiac", like it's a status symbol.

Now, if I were the executive director of The National Association for the Financial Enrichment of Gastroenterologists, I'd love this sort of mindset-establishing branding. But as someone who has probably had undiagnosed celiac disease for decades, who got a 59 on the tTG, who is probably facing a 'scope in a few weeks, and who is -- and this is the real reason I ask -- REALLY reluctant to inflict scopes on his 9-yr-old and 6-yr-old sons who probably also have it, what's the point? What useful, relevant info does the biopsy consistently deliver that a high-positive tTG plus several months on the diet wouldn't? Why should I do this to my kids?

jacflash......did your doctor do an EMA blood test in the panel? That would be the Endomysial Antibody test. It is 100% specific to Celiac Disease, meaning no other

disease will give you a positive. It should be done in conjunction with the tTg...these 2 tests, if positive, are as good a diagnosis for celiac disease as the biopsy is. It is how I was diagnosed. My tTg was 200 and the EMA was positive so I turned down the biopsy. No regrets on that one!

If you have a diagnosis for celiac disease, there is really no need to put your sons through the biopsy. You may need to remind the doctor that celiac disease is genetic so if you are diagnosed, it's one of those no-brainers, if your kids are symptomatic. Good luck!

[sbj]

You may need to remind the doctor that celiac disease is genetic so if you are diagnosed, it's one of those no-brainers, if your kids are symptomatic.

Gosh, I couldn't disagree more! There are many. many, many (did I say many?) conditions that have symptoms similar to celiac disease.

[gfb1]

jacflash......did your doctor do an EMA blood test in the panel? That would be the Endomysial Antibody test. It is 100% specific to Celiac Disease, meaning no other

disease will give you a positive.

this is not 100% correct. anti-endomysial antibodies can be found in patients with alcoholism, inflammatory bowel disease (non-celiac related) and after certain abdominal injuries/surgeries. indeed, these patients are usually EXCLUDED from studies showing the relationship between EMA and celiac disease.

the endomysial tissue is proteinaceous connective tissue surrounding muscle fibers, and antibodies can be developed anytime there is chronic injury to the endomysium in which the protein is introduced to the blood stream or surrounding tissue.

further, there are a number of studies clearly definining endomysial antibody-NEGATIVE patients with celiac disease.

[Tallforagirl]

...REALLY reluctant to inflict scopes on his 9-yr-old and 6-yr-old sons who probably also have it, what's the point? What useful, relevant info does the biopsy consistently deliver that a high-positive tTG plus several months on the diet wouldn't? Why should I do this to my kids?

Have the boys had positive blood tests as well? If not, you could consider getting them tested for the celiac disease genetic markers. Although it can't diagnose celiac disease, this test can rule it out if you don't have the right genetic markers.

BTW the endoscopy is a very straightforward, quick procedure. If done under sedation you remember nothing afterwards, and it's over in about 15 minutes. The hardest part is fasting beforehand, I reckon!

By having the endoscopy you can establish a baseline to compare healing of villi later on, should there be any delay in your recovery. They can also check if there is anything else going on other than celiac disease that may need treatment.

If your biopsy is negative, you may find your doctor is happy to confirm diagnosis of celiac disease anyway, given a positive dietary response. I've certainly read accounts on this forum where that's happened.

[JNBunnie1]

Have the boys had positive blood tests as well? If not, you could consider getting them tested for the celiac disease genetic markers. Although it can't diagnose celiac disease, this test can rule it out if you don't have the right genetic markers.

BTW the endoscopy is a very straightforward, quick procedure. If done under sedation you remember nothing afterwards, and it's over in about 15 minutes. The hardest part is fasting beforehand, I reckon!

By having the endoscopy you can establish a baseline to compare healing of villi later on, should there be any delay in your recovery. They can also check if there is anything else going on other than celiac disease that may need treatment.

If your biopsy is negative, you may find your doctor is happy to confirm diagnosis of celiac disease anyway, given a positive dietary response. I've certainly read accounts on this forum where that's happened.

There is the fact that Celiac can cause other issues, or be related to other issues, that if your children have had severe intestinal problems, you might want to check for.

That being said, a colonoscopy is NOT a walk in the park, not for everyone anyway. Not only is the 'cleansing' portion of your program violent and painful, but there are those happy few of us who DO remember every minute of their colonoscopy/endoscopy with vivid detail, and I can't think that would be fun for a kid. Of course, it's much less likely that a child would be as impervious to most drugs as I am, I'm just venting, because not every colonoscopy is a walk in the park.

Anyway, if you do get gene testing, be warned that not all the celiac disease genes have been identified, and some positively diagnosed Celiacs do NOT have the generally recognized genes.

[WW340]

It is simple really, the fact is, the biopsy is the gold standard. If you want to be diagnosed celiac with no doubt, you get the biopsy. If you don't care whether or not you have a firm diagnosis which cannot be denied, then don't get the biopsy. No ones opinion here is going to change the facts. It is the gold standard of diagnosis. If you can live without knowing that, go for it. Your doctor is not obligated to diagnose you with celiac without the gold standard biopsy. In fact, if you read other threads here, your doctor may be at risk for diagnosing you without that gold standard, as you can be denied insurance based on that diagnosis. Even if you have a doctor now willing to diagnose you with celiac, the children's doctor may refuse that diagnosis later, or a doctor that assumes your care later can doubt the diagnosis. That means you may not be able to get doctors notes for gluten free foods at school. Your doctor did not make the rules, it is called standard of care. He is at risk if he violates the standard of care. However, you have the right to refuse any test your doctor recommends.

The biopsy is done by endoscopy, not colonoscopy, there is no cleansing regime for that, just fasting prior to the test.

[coldnight]

There is the fact that Celiac can cause other issues, or be related to other issues, that if your children have had severe intestinal problems, you might want to check for.

That being said, a colonoscopy is NOT a walk in the park, not for everyone anyway. Not only is the 'cleansing' portion of your program violent and painful, but there are those happy few of us who DO remember every minute of their colonoscopy/endoscopy with vivid detail, and I can't think that would be fun for a kid. Of course, it's much less likely that a child would be as impervious to most drugs as I am, I'm just venting, because not every colonoscopy is a walk in the park.

Anyway, if you do get gene testing, be warned that not all the celiac disease genes have been identified, and some positively diagnosed Celiacs do NOT have the generally recognized genes.

Don't know if this is in reply to what I said, but I said, comparatively, an endoscopy is a walk in the park compared to a colonoscopy. I've had a couple and they are horrible, but the endoscopy was a breeze, didn't even know I had it until they told me much later on. The prep for a colo is terrible, but I don't think you need a colo to diagnose celiac, but maybe to rule out other problems, unfortunately for us all. They need more of those swallow the camera things, but I think you still have to do the prep. I wish they'd just let you not eat for like 4 days, I'd MUCH MUCH rather do that than drink another bottle of phospho-fleet... UGH! =)

But yea, for an endo, no prep, just fasting, and it's over quick.

[JennyC]

First of all, there are plenty of laboratory tests, such as GFR, where the "gold standard" is not often used. This can occur for a variety of reasons, such as expense, and patient discomfort. If the patient has celiac symptoms or family history, positive blood work, and positive dietary response that is an adequate diagnosis. Many health professionals take that as a diagnosis, including my son's highly regarded gastroenterologist. It seems that there is a gradual transition taking place in the medical community, moving away from biopsies, and there are been plenty of studies suggesting that biopsies are not required for diagnosis. Lastly, many who do get the biopsy do not show villous atrophy and still walk away with a celiac diagnosis...so what's the point?

[psawyer]

When I was diagnosed, over eight years ago, the blood testing was just not where it is today. I had an endoscopy with biopsy, and was given a definite diagnosis of celiac disease. I had a colonoscopy at the same time which found nothing, ruling out other possible causes of my distress.

Acceptance of the blood tests is growing, but the positive biopsy is universally accepted. If you need to have documented proof of diagnosis that will not be challenged, then a positive biopsy will provide that.

[Fiddle-Faddle]

I also don't feel that a biopsy on a child is inflicting them with a procedure. My daughter went in at 7 am and was home by noon. She had no pain afterwards and they even waited until she was asleep before putting in her IV (it was out by the time we saw her in recovery). This few hours of very low risk will give her a lifetime of knowing for sure what she has and what she needs to do.

That's like saying that giving children gluten to eat should not give any of them stomach aches.

I'm glad your child did so well with the biopsy, but what about the ones who don't? THERE ARE RISKS--it's low-risk compared with open-heart surgery, but high risk compared with, say, ear-piercing.

There IS a risk of death.

Tell someone whose child died from the sedation that it's low-risk, or someone whose child was in terrible pain and bleeding internally (I do know someone whose child had this happen) that it's low risk.

Also, the biopsy has less accuracy than the blood work. Biopsies are only positive when there is enough damage so that the surgeon does not easily miss and biopsy an unaffected portion of the intestines. Otherwise, it's hit-or-miss. You've got 22 feet of intestines, and they only biopsy a few 2-centimeter portions--and villi damage is often patchy and not visible to the naked eye.

Yes, when the biopsy is positive, you've ruled celiac IN for sure and certain. But when it's negative, you haven't ruled it out. You've only ascertained that that portion of the villi is not damaged.

And remember that for some celiacs, the gluten reaction can bypass the villi altogether and attack something else, like skin (as in dermatitis herpetiformis).

I gotta say, jestgar put it BEAUTIFULLY, and I totally agree with her.

[Gemini]

this is not 100% correct. anti-endomysial antibodies can be found in patients with alcoholism, inflammatory bowel disease (non-celiac related) and after certain abdominal injuries/surgeries. indeed, these patients are usually EXCLUDED from studies showing the relationship between EMA and celiac disease.

the endomysial tissue is proteinaceous connective tissue surrounding muscle fibers, and antibodies can be developed anytime there is chronic injury to the endomysium in which the protein is introduced to the blood stream or surrounding tissue.

further, there are a number of studies clearly definining endomysial antibody-NEGATIVE patients with celiac disease.

Every doctor and medical reference material I have looked at, including talking with the lab directly, have stated it is 100% specific to Celiac Disease. You also have to factor in whether the patient has active symptoms that would steer a person to having a Celiac panel done. The current thinking is if a patient has a positive tTg AND a positive EMA, then it's a slam dunk for celiac disease and the biopsy is optional. I think the problem is that most people do not have this test ordered because it cannot be read by a machine and requires skilled, human testing for a correct result. That makes it expensive to do which is a no-no in HMO-Land.

[Gemini]

Gosh, I couldn't disagree more! There are many. many, many (did I say many?) conditions that have symptoms similar to celiac disease.

But if a parent or first degree relative is a diagnosed Celiac, and someone else in the family has flaming Celiac symptoms, considering it IS a genetic disease and is FAR more prevalent that most of the medical profession care to admit, why would a doctor NOT look to Celiac first and foremost? The VAST majority of my family have a problem with gluten, although the denial is huge, and do not have IBS, as they would like to believe. There may be many other diseases that have similar symptoms to celiac disease, but it's a whole different ball game when there is just one little Celiac in the family. As I have told my relatives, there is no such thing as one Celiac in a family. I would guess that most to all of the members of this forum all suffer from family members in denial....it isn't the most common genetic disease

for nothing.

[sbj]

But if a parent or first degree relative is a diagnosed Celiac, and someone else in the family has flaming Celiac symptoms, considering it IS a genetic disease and is FAR more prevalent that most of the medical profession care to admit, why would a doctor NOT look to Celiac first and foremost? . . . There may be many other diseases that have similar symptoms to celiac disease, but it's a whole different ball game when there is just one little Celiac in the family. As I have told my relatives, there is no such thing as one Celiac in a family.

The point was - and I'll stand by it thank you very much - that just because a parent has celiac disease and a child has symptoms similar does not mean that it is a 'slam dunk' that the child has celiac disease. I NEVER said that a doctor shouldn't 'look' to celiac so please don't mischaracterize what I wrote. Of course a doctor (and parent) should investigate celiac - presumably by doing a celiac blood panel and - dare I say it? - a simple, safe endoscopy if both the parent and doctor agree it is warranted. And, contrary to what you say, it is, indeed, quite possible that only one member of a family has celiac disease - you simply can't prove otherwise.

Gemini - it is my opinion that it is potentially dangerous to the health of a child to assume that their issue is celiac disease - slam dunk - in the absence of testing/diagnosis. I think folks should work with their doctors for a proper diagnosis and should avoid self-diagnosis if at all possible. My position is not controversial. I understand that sometimes the blood test is all that is required. However, if the parent has celiac and the child has symptoms it's quite another thing to assume that therefore the child has celiac (that's what you wrote). That child might have something else entirely, that's why you should get the celiac blood panel and listen to your doctor if they recomend further testing. No one here is suggesting unnecessary tests - only that people make informed choices. I don't think diagnosing your child based on a genetic test and symptoms alone is a good idea - personally I would at the minimum want to see the results of the celiac blood panel before 'inflicting' the gluten-free diet on a child.

[mimommy]

Well, I don't have much new to add here, but after reading this a few times I just have to reply. I have already stated that I would not do the scope if I had it to do over again. I have already shared that the biopsy performed on my little one did not show damage--not until ANOTHER doctor looked at it many, many months later. What I haven't said is that my child's celiac panel results prior to the scope were as follows:

endomysial was 1:80 (I was told 1:10 was normal)

tissue transglutaminase was 90 (less than 20 was normal)

Those are some pretty high numbers and the ped. felt certain it was celiac. Unfortunately she sent us to a specialist who wasn't convinced. After throwing every test they could think of at her, the ped. and GI both wanted the biopsy,although the ped. was willing to just start her on the diet without it. We were not agreeable to more testing, especially when there is general anesthesia involved..."It's perfectly safe...now,just sign here stating that you are aware medical science is not an exact science and that severe injury or death my result from anesthesia" Yes, that is almost exactly what the Providence Hospital waiver said! Of course, we did eventually consent to the scope, but it was a very tough choice. I can only say that although I never had much faith in the GI, and live my life by a belief that less is best as far as medical procedures are concerned, something deep inside me--some little voice--knew that we needed to do this (or, at least that it would be ok.)

My suspicions about the doctors abilities were right on, and I have since switched to a specialist who is much more familiar with this disease. His pathologist is the one that found the villus damage.

It seems to me that if a simple (lol) dietary change can treat it, why risk the biopsy? If the celiac panel numbers indicate celiac, why put the patient and financially responsible parties through the cost and risk of a procedure?

"Gold Standard"? Well, stick a star on my forehad and call me a USDA PO'd PPO'd anti-medite!

[gfb1]

Every doctor and medical reference material I have looked at, including talking with the lab directly, have stated it is 100% specific to Celiac Disease. You also have to factor in whether the patient has active symptoms that would steer a person to having a Celiac panel done. The current thinking is if a patient has a positive tTg AND a positive EMA, then it's a slam dunk for celiac disease and the biopsy is optional. I think the problem is that most people do not have this test ordered because it cannot be read by a machine and requires skilled, human testing for a correct result. That makes it expensive to do which is a no-no in HMO-Land.

Open Original Shared Link, the converse does not follow either -- a negative EMA does not mean that you do NOT have celiac disease.

as i, perhaps ineffectively, tried to explain -- a breakdown of the endomysium occurs anytime there is chronic damage of muscle fibers in the intestinal mucosa. these proteins enter the bloodstream and there is an immune response to them.

the most common of condition which can cause this reaction is alcoholism -- which occurs at about 3x the frequency of the highest estimates of celiac disease.

'known' alcoholics (and others, e.g., patients with inflammatory bowel disease) were pre-screened and eliminated from the studies that lead to your description of the problem.

when tests are performed in the population-at-large (ie., the random person who goes to the doctor with a complaint); diagnoses are based on a panel of tests; taking into account both Open Original Shared Link.

[ravenwoodglass]

I don't think diagnosing your child based on a genetic test and symptoms alone is a good idea - personally I would at the minimum want to see the results of the celiac blood panel before 'inflicting' the gluten-free diet on a child.

What is wrong with putting a child from a family with a history of celiac and issues suggestive of it on the diet? If the diet helps them you have the answer, if it doesn't then look elsewhere. It is well known that the rates of false negatives for children is even higher than it is for adults. If the history is there and the symptoms are there and the diet gives relief from those symptoms then a lot of needless expense and possibly years of misdiagnosis and ineffective and dangerous meds could be avoided. I would give anything to have had a doctor even consider that it was celiac that was destroying my body and that blood tests might not have been right. My life and my childrens would have been quite different it they had.