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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease SymptomsWhat testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease ScreeningInterpretation of Celiac Disease Blood Test ResultsCan 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-FreeIs celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic TestingIs there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and DisordersIs 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 BeveragesDistilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free?Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free DietFree recipes: Gluten-Free RecipesWhere can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.For Additional Information: Subscribe to: Journal of Gluten Sensitivity
Yesterday, I spent a lot of time reading through what the various tests meant, Entrolab, etc.
Is it possible to test positive on the EMA and tissue transglutamaise without having blood in the stool? It seems like most of the anti-bodies are actually in the small intestine, a place were I have no blood (at least according to all the stool tests performed last semeter). So I'm curious how the anti-bodies get to the blood from the small intestine if the small intestine has no blood. Any help will be greatly appreciated.
P.S. Note to gf4life...I'm very happy that your husband has OK'd the money for the tests. Hopefully, you can get some answers.
I was just reading some of the FAQ's, here on Celiac.com.
One of the FAQs said something that totally contradicts everything I've been reading today.
Here it is:
One case I know of had elevated gliadins (both types) but normal EMA and ARA, plus an inconclusive biopsy. Do you see this often?**
Vijay Kumar, M.D., Research Associate Professor at the University of Buffalo and President and Director of IMMCO Diagnostics: If the tests are performed using well standardized tests with known positive and negative predictive values then you can make the statement that if the serological tests are negative celiac disease can virtually be ruled out. The problem is that some of these assays, especially the gliadin, can give you false positive results. In our laboratory we rarely see positive AGA results in the absence of EMA and ARA antibodies.
Is this true? I thought that if the EMA and transglutamaise (sp?) tests were positive, you can be 100% certain that you have celiac and that the damage to your small intestine is fairly advanced. However, if they are negative. you may have celiac, you may be gluten intolerant, you may have nothing...it would be hard to say.
I'm going through the same thing right now. I have all the symptoms...bloating, diarrhea, upset stomach, floating stools, hair falling out...everything except being underweight. Except the Gliadin IgG, which was a weak positive, all the lab tests have come back negative.
However, after reading some information on the www.enterolab.com site, it appears as though the EMA test is very specific but not very sensitive. This means that if it is positive, there is no possible way it is a false-positive...you have Celiac. However, it being negative doesn't mean much.
It being negative only means that the villi in the small intestine have not yet totally atrophied. This is because it is a blood test, and for the antibodies to get from your small intestine to the blood there must be some major, major damage. Only 30% of the people with partial villi-atrophy tested positive on the EMA / transglutamine tests even though there was, indeed, some damage to the villi.
I may be spelling some of these words wrong (sorry about that), but if you go the thread I started today (I'm Simply), gf4life has posted some links that give more details.
Since the way he tests is still so new, will mainstream doctors accept the diagnosis?
Like most people on this board, this is not my only medical problem. I'm positive that sometime in my future, I'm going to have to go on yet another drug, and there is a strong possibility that the drug will not be gluten free.
If I tell a doctor that I have to be gluten free based on one of these tests, will he buy it? Will pharmacies buy it?
I'm asking all the questions because $400 is a lot of money (at least to me right now, I'm of course hoping that in the future it won't be, but c'est la vie). I want to know all the ins and outs before I commit to it.
Thanks for all your help in answering these questions...it's nice that those who have gone before are willing to spend all the time helping those that follow.
First, I read through some of the information Dr. Fine provided on the site, and it seems to make sense. However, since I am about to be an attorney (if I can get my brain working long enough to pass the bar) and am not anywhere close to being a doctor, I know I don't have the expertise to determine whether he is a quack. What he's written sounds good, seems logical, but he could just write well.
Second, how does the Enterolab process actually work? I've collected stool samples (all last semester, so my doctor could figure out my Diarrhea)...does Enterolab send the container, and then you send it back? How do they keep all the little cells that they will look at alive during the shipping process? Or do I actually need to get myself there so that I can collect the stool using their toilet, then hand it off to them?
Third...I think the tissue transglutimase that was ordered was of the IgG variety. I'm thinking that even with a negative EMA, the tissue one may be positive even if I'm one of the lucky few with selective IgA deficiency.
I'm thinking that at this point, it doesn't look like I have
celiac. My test results that I have so far are as follows:
Gliadin IGA Antibody: Negative (12.6 --- Negative is anything under
20 - Two weeks off gluten at the time)
Gliadin IGG Antibody: Weak Positive (29 --- Weak Positive is between
20 and 30 - Two weeks off gluten at the time).
Antiendomysial Antibody (EMA): Negative (was not able to get an
exact value even though I asked for it - After five weeks of LOTS of gluten, every day.)
Antitransglutaminase (tTG): I don't have this one yet, but based on
what I've read, if the EMA is negative, the tTG will probably be
negative as well. - After five weeks of LOTS of gluten, every day.
I would think that maybe I have IGA deficiency, except that I
obviously have some IGA...I'm in the middle of the normal range for the IGA Gliadin test.
I don't know what to think about all this. On the one hand, I'm
happy because I really like bread and it looks like I can keep
eating it. However, my having Celiac explained so much. I was
thinking that if this was the root cause to all my gastro-intestinal
problems, maybe I could give up gluten and then get some energy
back. Maybe I could stop having diarrhea and floating stools. Maybe
I could actually get my HDL cholesterol up (the good kind.)
Now, it seems like I'm back at square one, with no bloody clue as to
what's wrong. After 13 years of Chronic diarrhea, I'm just a little
tired. And with my moving in four weeks, it's not like I have a lot
of time to do all the sleuthing with the doctors that I have now.
I'll have to go DC, get a whole new slew of doctors, and on and on.
So, do I have to be on gluten for an accurate Total IgA test?
This is incredibly frustrating. Any insights will be greatly appreciated.
P.S. I thought I posted a similar thing...however, I think I messed it up. Anyway, it's not showing up. If I did, you can ignore this.
Well, I was able to see the gastroenterologist today. She was very friendly (what a relief) and she seemed to know what she is doing. She is a faculty member at the University of Michigan medical school, so I'm hoping she's clued in.
Anyway, she said that I probably didn't have celiac despite my symptoms because most people with Celiac are underweight, and I'm 100 pounds over. However, she ordered the proper tests anyway just to be on the safe side - it is an easy test to run, and if that is the problem, we really ought to know now.
So, now I have a week to wait. That's fine. I'm patient.
If I don't have it, I'll need to get a colonoscopy to find out whether I have micro ... colonitis or something like that. I'm not sure if I caught the name quite right.
I've not yet been diagnosed with Celiac, although I'm pretty sure that I have it. I had no idea what it was until my doctor ran a blood tests for gluten antibodies a few weeks ago thinking that it may be the cause of a wide variety of poo problems.
Anyway, he let me know that one of the tests cam back as a weak positive, that I might have gluten sensitive enteropathy, and that I should see a gastroenterologist. (Note: I chose the two weeks before the blood test to do atkins...as a result, I had NO gluten during those two weeks - with the exception of a small amount of soy sauce.)
Anyway, while my doctor is out of town, I've been eating a lot of bread and pasta because everything I've read says that you should be eating gluten while they try to diagnose you...otherwise, everything comes up false negative.
Right now, I'm having unbelievable stomach pains....they are not really localized...instead they're pretty much all over. Also, my bones hurt, my hair is falling out, blah, blah, blah. The weird thing is that my symptoms are different before going gluten-free for those two weeks than they are now.
1. Is it normal to have different symptoms after going gluten-free for two weeks.
2. How much gluten must I eat on a daily basis to make sure I don't get a false negative (couple crackers or a plateful of pasta plus a few slices of garlic bread)?
3. For how many weeks before the blood test must I be eating gluten? Before the biopsy?
4. Is it normal to be obese and have this thing? If it is possible, HOW?
5. Must you fast before taking the gluten anti-bodies blood test (the first time I took it, I had to because of some other blood work that was being done.)
6. Do you have to stay in the hospital to have the tube slid down your throat for the biopsy...or do you have to be in the hospital at all...do they give you drugs if you have a nasty gag reflux.
Yeah, I have lots of other questions, but that should be enough for now.