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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Question About Anti-Endomysial Antibodies (Ema), Iga Class
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Hello, everyone, I am a first-time poster to this board. Thanks for considering my question.

I'll provide background on my own gluten-consuming history and problems later if anyone thinks it is necessary, but for now, let me ask a question that should be generally applicable regardless of an individual's particular issues and history:

Is it necessary to be consuming gluten beforehand in order to have an accurate reading in a Anti-Endomysial Antibodies (EMA), IgA class blood test for celiac? I've read and heard anecdotally that consuming gluten for a spell before blood tests is necessary to achieve accurate results, but my doctor ordered this specific test and told me that it is NOT necessary to eat gluten beforehand because once antibodies form, they stay in the body for decades.

Thanks in advance for your help.

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Yes, gluten consumption is needed.

As for the antibodies staying, they vanish not long afterwords (thus the reason why people need to stay on it during testing). This is why its advised for celiacs to have regular blood tests after diagnosis. :)

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The blood tests measure if you are currently making antibodies. If you aren't eating gluten, you aren't making any. Read around on the Univ of Chicago website for explanations of the blood tests and print some out for your doctor. Or get another doctor..

http://www.curecelia...-celiac-disease

"Which blood tests should I have to screen for celiac disease?

You should have both tTG-IgA and total serum IgA tests to screen for celiac disease. As long as you produce IgA (total serum IgA confirms you do), tTG-IgA is 98% accurate in measuring elevated antibodies. If IgA deficient, or if there is some other equivocating factor to potentially compromise the blood test, then an EMA blood test is also given.

Other gliadin antibody tests are not useful in screening for celiac disease."

http://www.curecelia...s=eating gluten

I’ve heard that I don’t necessarily have to endure 12 weeks of eating gluten if I have a severe reaction. Is that true? How does it work?

The gut needs time to mount an antibody response that can be measured in the blood, which is why we recommend 12 weeks of eating gluten. If you experience symptoms immediately, it’s likely that the gut itself has quickly become damaged. In these cases, you and your medical professional could consider a shorter gluten challenge (3-4 days) and then have a biopsy.

Diagnosis is not an exact science, each person responds differently to the presence of gluten in the small intestine and the amount of time it has been there. Be sure to work with your medical professional to adjust your diet, if needed, during your gluten challenge.

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Your responses are most appreciated, thank you. I was afraid gluten consumption before the test was needed. Predictably, the test results were negative.

I have been relatively gluten-free for over a decade. I say relative because I allow myself to eat non-certified oats daily and drink some beers on the weekends. As others have reported, some beers I seem to handle fine and others not so well. I decided to include a celiac test in my annual physical because I am beginning to fear that if I am legitimately celiac rather than gluten-intolerant, I am doing long-term damage by consuming even the minimal amounts of gluten in non-certified oats and beer.

Unfortunately, it seems the test was a waste of money since I was told eating gluten beforehand was not necessary for an accurate reading. Drag.

Thanks again for your input.

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http://www.curecelia...-celiac-disease

...

"...Other gliadin antibody tests are not useful in screening for celiac disease."

...

Wait, what??

So all the posts here specifying FULL Celiac Panel would all be wrong per UofChi?

No IgG, AGA, DGP??? :huh: what's going ON over there?

Did I read all that wrong? Maybe it explains still doing 12wk challenges? (I hope THAT'S wrong - that'd be ridiculous)

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Your responses are most appreciated, thank you. I was afraid gluten consumption before the test was needed. Predictably, the test results were negative.

I have been relatively gluten-free for over a decade. I say relative because I allow myself to eat non-certified oats daily and drink some beers on the weekends. As others have reported, some beers I seem to handle fine and others not so well. I decided to include a celiac test in my annual physical because I am beginning to fear that if I am legitimately celiac rather than gluten-intolerant, I am doing long-term damage by consuming even the minimal amounts of gluten in non-certified oats and beer.

Unfortunately, it seems the test was a waste of money since I was told eating gluten beforehand was not necessary for an accurate reading. Drag.

Thanks again for your input.

I just got tested by my dr - waiting for results. While I havne't been on gluten free diet - i have had minimal digestion because I am doing Atkins - so no bread, wheat products consumed. May have digested some in other forms - she was aware of that but didn't say it would impact the results - not until i read hear did i realize hey i probably shoudl have consumed before. I spoke with my family dr and he said I may have to be retested if the results don't come out as they suspect - strongly believe celiac due to malabsorbion of vits.

I'll let you know how my tests come back and if she says I need to consume and then retest.

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Wait, what??

So all the posts here specifying FULL Celiac Panel would all be wrong per UofChi?

No IgG, AGA, DGP??? :huh: what's going ON over there?

Did I read all that wrong? Maybe it explains still doing 12wk challenges? (I hope THAT'S wrong - that'd be ridiculous)

I have noticed this not only on the University of Chicago's site but many other medical sites as well that this forum references. Sometimes I get the feeling that there are multiple different people with very different opinions filling out the FAQ at Chicago University's website.

They say that the gliadin antibodies are not useful for CELIAC disease but rather a gluten allergy. The thought for this would be based upon the fact that anti-Gliadin ab's have absolutely no predictive value for intestinal damage which is what celiac is, so to them the only true measurement of celiac is EMA and TTG which to me is also flawed because that only evaluates damage in the intestine that studies have shown can be caused by various reasons (well the TTG at least).

As for the deamidated I am pretty sure they weren't referencing it in that statement but many doctors are still sceptical on it since it is still new and there have been clinical studies that have shown a predictive value of celiac no better than the previous gliadin ab's.

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What?

I've read many sources that list the gliadin test as tests for gluten intolerance - while many others site as the first celiac antibody to rise/fall in corelation with gluten ingestion, but never (that I recall) gluten allergy.

If incosistancies are found at any celiac center - I'd look to UofMaryland. I know that there have been incosistancies on UCSDs small website so Id imagine UoC could have some too - email them the page for clarification - would hate to have them reduce the amount of helpful info they publish.

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They say that the gliadin antibodies are not useful for CELIAC disease but rather a gluten allergy. The thought for this would be based upon the fact that anti-Gliadin ab's have absolutely no predictive value for intestinal damage which is what celiac is, so to them the only true measurement of celiac is EMA and TTG which to me is also flawed because that only evaluates damage in the intestine that studies have shown can be caused by various reasons (well the TTG at least).

The gliadin antibody tests are very useful, along with a full celiac panel. It will tell you whether you are reacting to gluten and is the standard test for dietary compliance, in those who are serio-positive. But it has to be coupled with all the other tests for a more complete picture. There is also the scenario where you could be reacting to gluten but show no intestinal damage on the tTg test. This still could mean you have Celiac....you may just not have acquired enough damage to show in blood work. Never heard of it being used for an allergy test...that would be IgE mediated, not IgA or IgG.

If you don't get the full Celiac panel, you haven't been tested for Celiac Disease.

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Intolerance/allergy is what I meant. Yes it can go down in celiac as well as gluten intolerance when gluten is stopped but that does not correlate with celiac in of itself as it does not cause damage, it is simply a negative reaction to gluten that is not specific to celiac. For this reason some doctors are under the impression it is not helpful at all, where in a big picture it is very helpful. You have to remember, many doctors won't entertain the thought of NCGI or going after diagnosis for it.

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The gliadin antibody tests are very useful, along with a full celiac panel. It will tell you whether you are reacting to gluten and is the standard test for dietary compliance, in those who are serio-positive. But it has to be coupled with all the other tests for a more complete picture. There is also the scenario where you could be reacting to gluten but show no intestinal damage on the tTg test. This still could mean you have Celiac....you may just not have acquired enough damage to show in blood work. Never heard of it being used for an allergy test...that would be IgE mediated, not IgA or IgG.

If you don't get the full Celiac panel, you haven't been tested for Celiac Disease.

Yes, I completely agree with that but unfortunately a lot of doctors don't. The correct view would be to say in of itself it does not have a high correlation with celiac (remember JUST celiac, nothing about NCGI etc..). It is very useful in a case where someone has an elevated TTG, with an elevated TTG and a negative reaction to gluten (positive AGA) it is very likely to be celiac.

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Yes, I completely agree with that but unfortunately a lot of doctors don't. The correct view would be to say in of itself it does not have a high correlation with celiac (remember JUST celiac, nothing about NCGI etc..). It is very useful in a case where someone has an elevated TTG, with an elevated TTG and a negative reaction to gluten (positive AGA) it is very likely to be celiac.

I still don't understand why testing gets so completely screwed up with doctors. Celiac has been in the mainstream for quite awhile now and yet, they still do not do the complete testing.

My sister, who has 2 AI conditions linked to Celiac, and a diagnosed sister (me), told me she doen't have it because her doctor tested her tTg and it was fine. :blink: This is what she wants to hear......

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I think the unfortunate reality is many doctors are not willing to do much unless you come in with horrid symptoms, if they would listen to the patient and do appropriate tests to catch early autoimmune I think the diseases in themselves would be of little issue. If treated early there are few AI's that can really hurt you, aside from Lupus, MS and type 1 diabetes I would say most AI's are very easy to manage diseases and wouldn't wreak the havoc that they do if doctors would just stop being so dismissive of early stage symptoms.

It's like my doctors just because I am not reacting to gluten they say I can't have celiac, ok what about all the positive tests I have had? Maybe I caught it early? I don't want to be as sick as you guys before they take me seriously. If I have it I am very happy I caught it before it made me sick, no thanks to my doctors who I have had to fight to be given the endoscopy.

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I think the unfortunate reality is many doctors are not willing to do much unless you come in with horrid symptoms, if they would listen to the patient and do appropriate tests to catch early autoimmune I think the diseases in themselves would be of little issue. If treated early there are few AI's that can really hurt you, aside from Lupus, MS and type 1 diabetes I would say most AI's are very easy to manage diseases and wouldn't wreak the havoc that they do if doctors would just stop being so dismissive of early stage symptoms.

It's like my doctors just because I am not reacting to gluten they say I can't have celiac, ok what about all the positive tests I have had? Maybe I caught it early? I don't want to be as sick as you guys before they take me seriously. If I have it I am very happy I caught it before it made me sick, no thanks to my doctors who I have had to fight to be given the endoscopy.

It is very hard to diagnose other AI issues also because not everyone is serio-positive. Plus the overlap of symptoms can fool even the most savvy doctor. AI diseases can wreak a lot of havoc if they go undiagnosed long enough. I have 3 others besides Celiac and I know I would not have developed some of them if I hadn't gone 30 years without the Celiac diagnosis.

Hashi's thyroid disease and Sjogren's Syndrome can hurt you, long term. I have those 2 and they are more of a problem than the Celiac is, although they have gotten better, symptom-wise, since going gluten free.

I think a lot of it is money driven. It's not a money maker for the medical community like other diseases are. Sad but true. Plus, anything to do with food related issues and doctors are automatically baffled. They usually won't address food issues.

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...

If you don't get the full Celiac panel, you haven't been tested for Celiac Disease.

I agree completely. I don't get how it's possible the oft-quoted U of Chicago skips over half of what we call a full panel.

http://www.curecelia...-celiac-disease

You should have both tTG-IgA and total serum IgA tests to screen for celiac disease....

... Other gliadin antibody tests are not useful in screening for celiac disease."

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