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Doll, what you say makes more sense than anything else I've read so far. Thank you for posting, and wow, I'm impressed how clearly you've put things.

I still don't understand, though, why gluten seems to be the trigger (or at least the catalyst) for all my other autoimmune problems that have improved significantly (thyroid, joint pain, fibrocystic breast disease, GERD, etc) since I went off gluten--but only my IgG was elevated. My IgA and EmA were normal, even in the skin biopsy.

Rho, I think people with DH can have elevated Ttg/EMA antibodies and undamaged intestines--in their case, the immune system attacks the skin rather than the villi? Which seems to indicate that the immune system can be triggered by gluten to attack any part of the body, not necessarily intestines.

And it does seem that gluten can be the trigger for RA, lupus, GERD (don't know if that is autoimmune, though). autoimmune thyroid disease, diabetes type 2, and bipolar syndrome. So many people here have had their symptoms improve or disappear completely after going gluten-free--that's got to be significant.

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Guest Doll
How could someone have elevated Ttg/EMA antibodies without intestinal damage? I thought that's what those tests were indicative of/specific for. Am I wrong about that?

Rho

Nope! You're right. Crap...I had a long explanation all typed out...and lost it!!! :o Basically, some people seem to have positive antibodies (Although a highly positive EMA almost always indicates damage), and a seemingly negative biopsy. Likely, this is due to biopsy error. However, there may be other causes. The term "latent Celiac" does exist, but I don't think we know enough about it. Maybe someone here knows more.

A recent study on Celiac.com said that some antibody positive children lost their antibodies even while eating gluten. There is another factor possibly at work. Perhaps the intestines are resisting any major detectable damage due to factor "X". It is seemingly possible to have a pos. Celiac panel and neg. biopsy.

Who knows??? :unsure:

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Guest Doll
Doll, what you say makes more sense than anything else I've read so far. Thank you for posting, and wow, I'm impressed how clearly you've put things.

I still don't understand, though, why gluten seems to be the trigger (or at least the catalyst) for all my other autoimmune problems that have improved significantly (thyroid, joint pain, fibrocystic breast disease, GERD, etc) since I went off gluten--but only my IgG was elevated. My IgA and EmA were normal, even in the skin biopsy.

Rho, I think people with DH can have elevated Ttg/EMA antibodies and undamaged intestines--in their case, the immune system attacks the skin rather than the villi? Which seems to indicate that the immune system can be triggered by gluten to attack any part of the body, not necessarily intestines.

And it does seem that gluten can be the trigger for RA, lupus, GERD (don't know if that is autoimmune, though). autoimmune thyroid disease, diabetes type 2, and bipolar syndrome. So many people here have had their symptoms improve or disappear completely after going gluten-free--that's got to be significant.

Yay! Usually I confuse everyone...even myself sometimes! Lol! ;) My fiance just gets the "deer in the headlights" look when I start talking....hehe... :P

I DO think that going gluten-free can help many symptoms of gluten being let into a leaky gut. This may include: depression, brain fog, joint pain, neuro symptoms, and of course all the gastro issues. These issues can occur in both Celiacs and those with leaky gut non-Celiac gluten intolerance (both let in gluten).

It may be possible that gluten acts as a catalyst to speed up other autoimmune diseases from occuring by stimulating the immune system and/or contributing to the leaky gut. There may be a percentage of people who can halt their autoimmune thyroid disease by stoping gluten if it is caught early, but they still might go on to develop it later if the actual trigger is not cut out as well (we don't know what that is). But as of right now, the vast majority of people who have autoimmune thyroid disease do not get "rid" of it on a gluten-free diet. Too bad, huh? :P I've been riding the Hashi's rollercoster for 15 years! My thyroid still makes some hormone from time to time, if you can believe it (very rare for this long).

I should also point out that there are known cases where autoimmune thyroid disease has spontaneously gone into "remission". I would not say this is common, but supposedly it has happened. Diseases like Lupus, MS and RA also come and go in "flares".

I *personally* think that many people with Celiac are misdiagnosed with RA and MS, etc. when they really have Celiac. The gluten-free diet will help these people for sure. The issue is that they never actually had RA or MS, they had undiagnosed Celiac all along.

Just to clarify (sorry!), Celiac has been linked with Type 1 (childhood) diabetes, but not Type 2. We don't know what the cause of Type 1 is yet.

Many people with Type 2 diabetes do see some improvement on the gluten-free diet though. This usually happens if they cut out all junk and processed foods, and grains (a source of carbs). All of these foods can increase insulin resistance. BUT, so can non grain foods, such as red meat (inflammatory) and potatoes.

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It is written :P that 1% of biobsy positive celiac does not have DQ2 or DQ8.

personnally I would like to see a "celiac/GlutenIntolerance" gene test on anyone that has an autoimmune illness, including cancer. I think that would be very interesting. wish we could get some big governmental useless organization to take on this study, they could string it out for years & collect 95 million dollars to study 300,000 people :rolleyes:

if it is estimated that 1% of the population has celiac, then how many do you think have gluten intolerance??? dr fine has a number for this but I cannot remember it at this senior moment.

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Hehe font and color fun!

Gluten reintro'd for me at age 5.

And I do mean "AT" age 5.

Mom was happy to give me a normal bday cake on my 5th - exactly per Dr's orders.

Was your reintro also at age 5?

I believe it was a little before that time Tom. I don't remember if it was all at one time or slowly though. But I always refused to eat bread -- I hated it.

Ed in MD

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Possible other causes for non-Celiac gluten intolerance include Lyme Disease (as shown on this board) or possibly an enzyme deficiency or form of unclassified allergy. I'm just guessing here.

To throw another one out there....mercury is known to block the dpp4 enzyme which breaks down gluten. This is why many autistic children do well on a gluten-free/cf diet....they lack enzyme function.

This can happen to *anyone*. Without a predisposition for Celiac...it cannot be Celiac.

It doesnt take large amounts of mercury or other heavy metals to inhibit the function of this enzyme. Mercury causes damage even in small amounts although it is almost never identified as a cause for dysfunction in the body. It is also extremely difficult to determine mercury toxicity even if its affecting all body systems.

The enzyme DPPIV, which would normally break down these peptides and eliminates them, is inactivated by mercury and heavy metals.

It has also been shown that the dpp4 enzyme that we need to break down casein and gluten is blocked by mercury. So, in addition to the diet and giving appropriate nutrient supplementation, we also recommend children be properly assessed for heavy metal toxicity like mercury overload.

Mercury also sets the stage for leaky gut by altering the intestinal environment...this is especially true when mercury is present in the gut and antibiotics are taken....promoting yeast overgowth.

If an individual has mercury in their body (and we all do) which has blocked the function of the dpp4 enzyme...then yes, there can be problems while consuming gluten and casein.

If the problems with mercury and inhibition of the dpp4 enzyme have escalated to the development of leaky gut...then gluten consumption can cause a significant amount of symptoms...being that its an undigested food protein entering the bloodstream.

In this case removing gluten from the diet can allow for a significant reduction in symptoms. However, in no way is this related to Celiac Disease...nor will it lead to Celiac Disease or damaged villi if there is no genetic predisposition.

This is my situation...textbook perfect villi....no antibodies in the blood and I lack the DQ8/DQ2 genes. There is no way I would progress to Celiac no matter how badly my body responds to it.

For me this started with significant exposure to mercury which led to not only the gluten intolerance but an intolerance of MANY foods....partly due to the leaky gut and partly due to enzyme dysfunction which prevents the breakdown of certain foods and food compounds.

If it only takes a small amount of mercury to cause damage or to inhibit the dpp4 enzyme....then it would make sense for a person who has lost function of that enzyme to feel a great deal of relief from symptoms while following a gluten-free diet.

Most of the info. out there about mercury and dpp4 is having to do with the treatment of Autism...however this enzyme can be deactivated by mercury at any age.

The gluten-free/CF Diet:

In addition to general food intolerances, there can actually be "drug-like" effects from certain foods. Mercury often adversely affects an enzyme in the digestive tract called DPP4. When this enzyme isn't functioning properly, children are not able to properly digest the two proteins gluten (found in wheat, oats, barley and rye) and casein (found in all dairy products).

The improper digestion of gluten and casein can cause the formation of morphine-like substances that enter the bloodstream, and can cause symptoms in the child such as spacey or withdrawn behavior, poor attention, constipation, high pain threshold, etc.

When the opiate-inducing foods are removed, often children seem to "come out of a fog" and show greater interest in their surroundings, and function and learn better. A gluten-free/CF diet (gluten-free, casein-free) has been shown to help about 80% of children on the autistic spectrum with their symptoms.

We get exposed to environmental mercury, mercury from vaccinations/shots (flushot), amalgams (biggest source), mercury in the food supply, etc, etc.

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However, if continued eating of gluten leads to damaged villi or other damage to the body with or without the presence of the celiac gene, what are the situations where the difference is important?

I see my situation as an example of where the difference is important. It was important for me to determine the exact cause of my symptoms when my tests were clearly not identifying Celiac as a possibility for me.

Whatever the "trigger" may be....if its left unidentified and untreated more problems can develop as a result. I do not know all that I'm genetically predisposed to...although thyroid disease is one which runs in my family....and I had already developed Graves Disease. I did not want to go down the path of having more and more autoimmune problems popping up over the years.

Although a person with Celiac may have other autoimmune diseases...I do not believe that Celiac is a *cause* for those other diseases. Otherwise people would not continue to develop these diseases while following a gluten-free diet.

In terms of the diet I see no reason to differenciate between Celiac or GI....however, there are times when its important to make a distinction. When looking for a diagnosis and Celiac tests are negative....it might be important to dig deeper.

In the overall picture of "better health" I do think its important to determine the cause of an immune reaction to gluten....wheter its Celiac, Leaky Gut, Lyme Disease, Mercury, etc. If we *assume* that everything is Celiac....even when the test arent backing that up...then we may be missing the opportunity to correct future conditions that may develop due to an unidentified underlying cause.

I believe its only 1-3% (or close to that) of biopsy proven Celiacs that do not carry a DQ2 or DQ8 gene.

P.S.

In this case Celiacs (with an "s") = more than one Celiac. :P

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Thank you, Rachel--that makes a lot of sense.

I'm still not convinced that a genetic predisposition toward celiac is necessary for damaged villi. I'm glad yours are healthy, though!

I am convinced that mercury AND other vaccines (like the MMR, whcih never contained mercury) are linked with autism.

80% of autistic kids can improve from a gluten-free/CF diet. In Andrew Wakefield's study, more than 80% (I think it was 23 out of 26?) of the autistic kids with "IBS issues" in his study had the MMR in their gut, while none of the non-autistic kids with "IBS issues" in his study had the MMR in their gut.

I don't remember seeing anything about celiac in this study, but I need to go back and look at it again. I'll try to post it if I find it.

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I think even more amazing is that little has happened (in the US) in the way of early dectection and treatment since 1952 when Dr. Dicke made the connection between the grain shortages of WWII and improved health of persons suffering Celiac symptoms. One would think in the 50+ years since we could have improved on the average diagnosing rate of 11 years. I think that is about to change. Simple and less expensive methods of testing with blood would be a good start. Also if the medical profession would use diet response (in a controlled enviroment) as a diagnostic tool we might improve early detection. I can understand today why no doctor would be willing to make a diagnosis based on what a patient "tells" him/her they have been eating unless there were some way to confirm. I'm surprised there isn't a facility one could check into (like the Mayo Clinic) in which the person can be put on a supervised diet (with or without gluten) for a certain length of time to study the effects. Based on the effects you can then schedule the blood tests/biopsy (in the appropriate time) to see what changes result. There needs to be some way to determine an "average" time for the progression of gluten sensitivity to gluten intolerance to possible Celiac Disease. Of course a stay at one of these facilities would not be cheap but if volunteers were used for research then that might allow some with early symptoms to participate. Just a thought.

Tom

I hope that the medical community changes. Frequently, celiac is the last thing doctors look for, instead of being something a doctor rules out. When I first went to the doctor with my symptoms, he performed an upper endoscopy (but no small bowel biopsy) and diagnosed me with reflux because vomiting was one of the symptoms. ONE of them.

I finally was tested after I did my own research and went gluten free on my own, so (no surprise) my blood tests came back negative. The fact that easier tests are being developed will only help the situation if doctors use them.

Sheryll

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As with many things there are conflicting answers to this on the internet so I'll see what I get here.

I thought the body produced the antibodies and they mistakenly attack the body causing villi (and other) damage. In other words, villi damage follows antibody production. I have seen some things that imply that villi damage releases/causes the antibodies.

Any opinions?

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Oh, that clarifies things! (Though I disagree with their statement that 1% of the population is affected. That's all that's been diagnosed, but, as you say, it takes 11 years to get diagnosed, so the number of people affected must be substantially higher than 15!)

My only positive bloodwork was the IgG, which was through the roof (64, with a reference range of 5-16) even though I'd been gluten-free for a month and had been on prednisone. Everything else was normal. The dermatologist who had grudgingly ordered the bloodwork insisted that this was normal bloodwork. My endocrinologist said it meant celiac disease, and immediately sent me to a rheumatologist to screen me for other autoimmune disorders. Incidentally, I really am impressed with my endocrinologist--she told me that she is starting to test all diabetic patients for celiac disease.

Anyway, since nobody seems to agree on my diagnosis, and the 2 endoscopies I had for GERD didn't result in a celiac disease diagnosis (they weren't looking for celiac disease, they were more interested in ruling out Barrett's esophagus, so I don't even know if they did a biopsy), I've just been calling myself gluten intolerant, but maybe that's not correct?

??????

That's the point, I think. Many times the people who call themselves gluten intolerant may not have gotten a definitive diagnosis for various reasons. And since the blood test results can be subjective, and the biopsy (or in your case - and mine) the endoscopy (checking for other things) can be inconclusive or even done incorrectly, how do you really know you don't have celiac disease? How do I know whether I have celiac disease or I am "just" gluten intolerant? I do know how sick gluten makes me. I do know that eliminating it from my diet has improved my health more than I can describe.

And since celiac disease - or gluten intolerance - can be associated with other autoimmune disorders - whether it causes them or not - then it seems like the only real difference is phrasing.

Sheryll

Sheryll

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How could someone have elevated Ttg/EMA antibodies without intestinal damage? I thought that's what those tests were indicative of/specific for. Am I wrong about that?

Rho

That was my understanding, too - that particularly the Ttg antibodies were highly indicative of intestinal damage.

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Without a predisposition for Celiac...it cannot be Celiac.

Okay, so if a positive biopsy is considered a definitive diagnosis, but people do have positive biopsy without the genetics, how can that statement be true?

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As with many things there are conflicting answers to this on the internet so I'll see what I get here.

I thought the body produced the antibodies and they mistakenly attack the body causing villi (and other) damage. In other words, villi damage follows antibody production. I have seen some things that imply that villi damage releases/causes the antibodies.

Any opinions?

Ok, I can't resist commenting on this topic anymore! I think the molecular biologist in me annoys people sometimes. :rolleyes:

If you are allergic to gluten, then you have an allergic reaction to gluten involving antibodies, such as IgA or IgG. There are at least four types of allergic reactions, and the allergy can fall into any of those categories, but type II is common amongst people with nonanaphylactic food allergies. During a type II reaction, B-cells release antibodies and subsequently macrophages and perhaps natural killer cells are activated which release their harmful components, which can actually damage our own cells.

Celiac disease is obviously incredibly complex, and I don't think anyone would claim to fully understand it. From what I understand, tTG alters the gluten molecule making it more easily recognized by T-cells. I believe that tTG can also cross-link gluten molecules, but anyway the body also becomes reactive against tTG. Once the T-cells become activated they release interferons, which are the molecules that initiate intestinal damage.

So gluten allergies involve Ig's and B-cells, while celiac disease involves tTG, T-cells and interferons, in an incredibly over-simplified nutshell! :)

Here's a FANTASTIC link that does into great gorry details about the molecular biology of celiac disease:

http://www.pubmedcentral.nih.gov/articlere...i?artid=1716218

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I'd also like to point out that they can only biopsy the top third of your intestine. Although everyone (researchers) say that damage will occur first in this section, I've never seen any autopsy studies showing that people with suspected Celiac had no damage in any other part of their small intestine.

It's like looking for your keys only where the light is and assuming that if they aren't where you can see them, then they must not be there.

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Okay, so if a positive biopsy is considered a definitive diagnosis, but people do have positive biopsy without the genetics, how can that statement be true?

They currently do not know all the genes involved.

There are approx. 1-3% of biopsy proven Celiacs who do not carry the *known* genes.

STILL autoimmunme diseases are genetic. If you dont have a genetic predisposition for Celiac...you wont get it.

The 1-3% of people without DQ2 or DQ8 must still have a genetic susceptibility...even if the gene (or genes) are still undetermined.

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I am convinced that mercury AND other vaccines (like the MMR, whcih never contained mercury) are linked with autism.

80% of autistic kids can improve from a gluten-free/CF diet. In Andrew Wakefield's study, more than 80% (I think it was 23 out of 26?) of the autistic kids with "IBS issues" in his study had the MMR in their gut, while none of the non-autistic kids with "IBS issues" in his study had the MMR in their gut.

If I'm remembering correctly I had heard that its the mercury from the vaccines that is weakening the immune system and creating problems in the gut. Once the MMR is administered the immune system already burdened by mercury does not kill off the virus as it should. Instead the virus thrives in the mercury toxic environment.

A few of the Dr.'s I see for treatment are mainly treating the autistic kids. They do find that the viruses and the heavy metals are pretty much always present in these kids.

I cant remember all the details. I've started bringing a voice recorder to my appts. so that I can remember everything as there is usually alot of info. to absorb.

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Such an interesting thread. LOVE hearing from a molecular biologist- thank you, Jenny! Just thought I'd chime in as another case of positive tTG with NEGATIVE biopsy. Positive dietary response. And 36 years with an IBS diagnosis. Very clearly sick before gluten-free, though. No DQ 2 or 8 genes. 2 DQ 1s. Clearly, more research is desperately needed!

lisa

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Ok, I can't resist commenting on this topic anymore! I think the molecular biologist in me annoys people sometimes. :rolleyes:

If you are allergic to gluten, then you have an allergic reaction to gluten involving antibodies, such as IgA or IgG. There are at least four types of allergic reactions, and the allergy can fall into any of those categories, but type II is common amongst people with nonanaphylactic food allergies. During a type II reaction, B-cells release antibodies and subsequently macrophages and perhaps natural killer cells are activated which release their harmful components, which can actually damage our own cells.

Celiac disease is obviously incredibly complex, and I don't think anyone would claim to fully understand it. From what I understand, tTG alters the gluten molecule making it more easily recognized by T-cells. I believe that tTG can also cross-link gluten molecules, but anyway the body also becomes reactive against tTG. Once the T-cells become activated they release interferons, which are the molecules that initiate intestinal damage.

So gluten allergies involve Ig's and B-cells, while celiac disease involves tTG, T-cells and interferons, in an incredibly over-simplified nutshell! :)

Here's a FANTASTIC link that does into great gorry details about the molecular biology of celiac disease:

http://www.pubmedcentral.nih.gov/articlere...i?artid=1716218

So does that mean that elevated tTg levels mean someone is celiac?

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I take the less-scientific side...as science is always being updated...and the "oops, there's more to this" is constantly occuring. That is the beauty of science; learning more and tweeking what is or was a strong theory or "fact."

Currently, "by the books" I would be considered "gluten intolerant" using the established criteria of needing a positive biopsy.

I have not had a positive biopsy.

However, two separate gastro.s have labled me with celiac disease. Both used the following explanation: I have a family history of celiac, I have four other dx.'d autoimmune disorders, positive bloodwork, "red flag" symptoms, and a positive dietary response. Both doctors said that locating the damaged villi can be difficult and the results are often inaccurate if not biopsied in the appropriate location.

One of doctors asked a simple question: "Why wait? So you can come back five years from now with your villi obviously distroyed like the rest of your relatives?"

I could care less whether I am labled with celiac or gluten intolerance...I'm just glad I finally know what actions to take to feel better. (And I'm praising God it's just managing my diet instead of another pill to swallow).

Just my thoughts. -Julie ;)

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Julie--------you are so lucky to get doctors that GET IT!!!!!!! So far my rhumatologist and my GP just cannot tune in to the fact that thyroid and fibromyalgia tie into the gluten thing. They will eventually and then........will they admit it???????? We will see. Barbara

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So does that mean that elevated tTg levels mean someone is celiac?

In my opinion positive tTG levels are indicative of celiac disease when accompanied by positive dietary response to a gluten free diet. tTG is an enzyme that is located in various locations around the body. When they test for tTG they are testing for an autoimmune reaction to tTG (anti-tTG) and this, I believe, is specific to celiac disease. I am not a doctor or a celiac disease specialist, but I have done many searches for diseases associated with anti-tTG and have only found it associated with celiac disease. I think that I read somewhere (maybe Celiac Disease: a Hidden Epidemic?) that this could also be associated with liver disease, but I have not seen any additional information about it. Either way, I don't think that liver disease responds to a gluten free diet. For me, positive tTG and good dietary response should be enough to diagnose celiac disease.

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Some good information: http://www.celiacdiseasecenter.columbia.ed...C05-Testing.htm

"Lack of concordance of endomysial antibody and anti-tTG

The discovery that the enzyme tissue transglutaminase (tTG) was the autoantigen for the endomysial antibody [20] prompted the development of ELISA testing for tTG. This allowed automation of the test for the detection of anti-tTG. The measurement of the EMA required a cumbersome, observer dependant immunoflourescence technique. As a result many laboratories have replaced the endomysial antibody with the anti-tTG test. However the test does not measure the same thing and there are differences in preparation of the antigen (tTG), either tTG from guinea pig liver or human tTG, preparation of the kits and cutoff values for each patient population. In addition there may be other antigens, apart from tTG , for the EMA [21]. The EMA is certainly the gold standard in the serologic diagnosis of celiac disease, for it is virtually 100% specific. However multiple cases have demonstrated that patients may be positive for one (either EMA or anti-tTG) and negative for the other, i.e. they lack 100% concordance [22-25]. As a result reliance on the anti-tTG as a single test will underestimate the presence of celiac disease and both the EMA and the anti-tTG should be performed.

Seronegative celiac disease

Both the anti-tTG and the EMA titers correlate with the severity of villous atrophy [26-29]. As a result in the presence of partial villous atrophy either antibody may be negative. In addition the mode of presentation of the celiac disease, i.e. presence of silent or subclinical celiac disease may be associated with a negative EMA [30]. Clinically seronegative celiac disease is similar to sero-positive celiac disease [23, 28] In view of the possibility of the presence of celiac disease in the absence of a positive anti-tTG or endomysial antibody the presence of a positive IgA AGA should prompt a biopsy [13]. Several studies have demonstrated that reliance on either anti-tTG or endomysial antibody as a single test will underestimate the prevalence of celiac disease [23, 25, 31, 32].

Causes of false positive celiac serologic tests

The endomysial antibody test is virtually 100% specific for celiac disease. However anti-tTG has been reported to be positive in the presence of liver disease, especially cirrhosis [33], diabetes [34, 35] and severe heart failure [36], as well as arthritis [37] and various autoimmune disorders [38]. The use of human tTG as the antigen in the test kit adds some greater specificity. Antigliadin antibodies may be present in inflammatory bowel disease [39], collagen vascular disease [40], and in many healthy people as well [41].

Positive serologic tests in the presence of a normal biopsy

This situation occasionally arises. The presence of a positive EMA with a normal biopsy indicates either the presence of celiac disease that was not detected in the biopsy, either because of too few pieces being taken or misinterpretation. The biopsy should be reviewed by an expert gastrointestinal pathologist. If it is considered to be truly a normal biopsy the patient may well have latent celiac disease and will probably develop the disease at a later date."

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