Tests For Celiac

[Darby]

I found this in part of an article:

Each of the celiac blood tests available measures the amount of a particular autoantibody in the blood and is available in both an IgG and an IgA version. IgG and IgA are 2 of the five classes of antibody proteins that the immune system creates in response to a perceived threat.

While both IgG and IgA types of each autoantibody will be present in the blood they are not equally specific for celiac disease. In general, the IgA forms of the tests tend to be more specific, and in some cases are used almost exclusively. IgG versions may be ordered either to complement the IgA testing and/or ordered because someone has an overall deficiency in IgA. This happens about 2% of the time with celiac disease and can lead to some false negative test results.

In the past the only way to diagnose celiac disease was with a biopsy of the small intestine. This microscopic evaluation is still considered the gold standard and is still used to confirm a diagnosis of celiac disease.

So, now I'm totally confused!! My bloodwork showed antibodies in the IgG and IgA. So does this mean I have celiac or does this simply mean that I have a wheat sensitivity? I just got into a semi-fight with the nurse at gastro Dr.'s office on the phone. She said there is no specific test just for celiac (blood test) and the only way was to do an endoscopy and take a biopsy.

I told her then I would like a gene test and she didn't like the idea but she said I could but my insurance probably wouldn't pay for it anyway.

I was under the impression that a biopsy would only show how much if any damage has been done.??

Well then what - the outcome is the same.

They are trying to tell me the only way to know for sure is to do the biopsy. Well, it just isn't going to happen. Unless they knock me out completely and they said they would NOT

do that.

Darby

sorry for any typos - I'm mad right now and typing fast.

[KaitiUSA]

If you had antibodies in both then yes you have it.

They most likely did the basic tests which include 1 or 2 IgA and the IgG. There should be 4 IgA's done and 1 IgG done:

-Anti-Gliadin (AGA) IgA

-Anti-Gliadin (AGA) IgG

-Anti-Endomysial (EMA) IgA

-Anti-Tissue Transglutaminase (tTG) IgA

-Total Serum IgA

The EMA and tTG are not usually done so you need to request these done. They are very specfic and have a slim-none chance or being false. I was diagnosed solely on the tests above done and a gene test that showed I have the DQ2 gene.

The biopsy will show how much damage is done if any

You can have a negative biopsy but still have it, just no damage yet.

Some doctors may not "officially" diagnose you without a biopsy but some will. My GI gave me a written diagnosis with just blood tests and a gene test.

You could take your tests to another doctor and see if he will give you a diagnosis.

[tarnalberry]

Since celiac disease is DEFINED as intestinal damage that occurs upon the consumption of gluten, many doctors will only take a biopsy results for a diagnosis - they want direct evidence of the damage which is celiac disease. The blood tests are markers which are generally only present if such damage is occuring, and hence are an indirect measure of whether or not you have celiac disease, and some doctors won't accept indirect measures for a diagnosis. You apparently have a strict doctor. ;-)

If you have elevated antibodies, and you know you don't feel well eating wheat, then you know what you need to do - stop eating gluten. You may - particularly with this doctor - never get a written diagnosis, but don't let that stop you from being as healthy as you can be. Many of us are not formally, fully diagnosed, but we know what works best for our body.

[Peaches503]

Hi,

I am also having problems with getting a confirmed diagnosis. My doctor said that the antigiladin antibodies are present in my blood. The only problem is that this test is only 60% sensetive and is 95% specific. In other words, he told me that in 100% of celiacs, this test will find the antibodies 60% of the time, and when it does find them, it is 95% correct. However, he said the problem with the test lies in the other 40% of celiacs when the antibody does not show up. So, he's ordering a Ttg test for me, but the labs have not put them into their computer system yet, so I have to wait a few weeks to get this other test done.

Has anyone ever had this happen? And what are the chances of me not actually having this? Is the antigiladin test a pretty safe bet on diagnosing me? I also have to mention that my mom, grandma, and 2 of my first cousins have thyroid disease, and my brother, one of my first cousins, and 2 great grandmothers had type 1 diabetes. My doc says the chances that I actually have it are bout 75-80%. What do you all think?

In the meantime, I'm so stressed and feel so lost with this diet. I'm not sure if I'm doing it right even though I'm trying so hard, but not feeling much better yet. I just wish I could get a confirmed yes or no on whether or not I have it. Anyone have any advice?

-Peaches

[Peaches503]

P.S. Please excuse my mispelling of Anti-Gliadin.

[KaitiUSA]

-Anti-Endomysial (EMA) IgA

-Anti-Tissue Transglutaminase (tTG) IgA

These 2 tests are the most specific for celiac. They are accurate and the chances of it being false are slim-none.

If you have a high tTG(which you said he was ordering for you) then you do in fact have celiac.

[Peaches503]

Thanks Kaiti! I hope the lab gets this test soon so I can have it done. Either way, I just want to know what's going on with me!

-Peaches

[tarnalberry]

However, he said the problem with the test lies in the other 40% of celiacs when the antibody does not show up.

Yeah... basically meaning you can get a false negative out of it, but you don't get a false positive out of it. Based on that, I'd say you should avoid gluten, but further testing - since he's already drawn blood - may be useful for you.

[KaitiUSA]

Yes, Tiffany has a point there. The 40% doesn't apply to you because you were one of the ones who came back positive and they are very accurate.

Since you had the blood work already done it won't hurt to have that extra test though.

[Peaches503]

Thanks so much for replying. I definitely plan to remain gluten free, but I have one question. Since I've been gluten-free for almost 2 months now, will the test results for the tTG be affected by this? I guess I just want to put my mind at ease, one way or another. If I have celiac disease, which I strongly believe I do, I would almost be kind of relieved because then I know for sure how I can help my problems. If it turns out not to be, then I'm lost again. Thanks for all your help. It is appreciated.

-Peaches

[tarnalberry]

Yep, being gluten-free for two months definitely increases the risk that you get a false negative.

[Peaches503]

Thank you for telling me that. I'll contact my doctor right away!

[Darby]

Do you have a nice understanding Dr.? Has he pushed you towards a biopsy? This whole procedure of getting a diagnosis -- bloodwork etc. has been a nightmare for me. And the kicker -- it really doesn't need to be. I've been on the edge for the past week. I have only seen the Dr. once and have had to deal with the evil nurse. She's a real "winner". I have been yelled at, told that I was stupid and told that everyone else I have talked to is stupid! Bascially they won't help me at all unless I do their biopsy.

They have done the IgA and IgG tests and those came back positive. What were the numbers (how high) I have no idea. So far she won't tell me.

After a huge fight on the phone, I"m going back today to HOPEFULLY get the (EMA)IgA and the (tTG)IgA tests.

When I tried to explain to her what I wanted and that maybe I could either email it or fax it, the nurse cut me off and yelled, "We know what those are - we are the experts."

At that point I could either start laughing or crying because of the frustration.

My holistic Dr. said, "are you sure that is the place for you?"

I just want those tests done and if I have to, I will have the whole paperwork faxed over to another Dr. - probably my GP who goes over things with me. Because I have a feeling that they are not going to tell me what the figures are.

Like your Dr. who told you the percentages etc.... treated you like a thinking human being.

My stomach is tied up in knots right now because I have to go deal with these people!

I will post back after my visit --

Darby

[Peaches503]

Hello,

My Dr's wife has had celiac disease for 15 years, so he is very sensetive and educated about the issue. He's not pushing for a biopsy at all. He definitely feels that I at least have a gluten intolerance, if not full-blown celiac disease. However, he's ordering more tests (tTG) but by the time our labs get it into their system so that I can have it done, I will probably have been gluten-free for about 2 months. I'm just concerned that I will get a false negative because of this. I have already called my doctor and am waiting to hear back from him. This is all just so confusing and it's not making me feel any better. Obviously, my labs need a good kick in the butt to get this test ASAP so that I can take it!

[Emme999]

Hello Everybody,

I just got home from the hospital where I had the biopsy this morning. It was unbelievably easy and painless. In fact, they had to tell me that they had already done it when I came to consciousness because I didn't feel a thing.

I was told "conscious sedation" and had expected to be... conscious! But I absolutely wasn't. It was a total breeze and I would do it again without a second thought. They didn't completely put me under - but they gave me an IV and then told me that they were going to spray some stuff down my throat that would taste nasty. But I never even tasted it - I was completely out.

I *highly* recommend getting the biopsy done and not putting it off. And I still have the bandage on my hand where they inserted the IV so it couldn't be that I've just forgotten how bad it was. It wasn't bad at all. It was completely painless. My throat is a little sore now, but that's all.

I am terribly sleepy however, so please excuse me. I'm about to drift to off!

Take care. You are wonderful. Have a beautiful day, and don't ever worry about the biopsy - it was effortless.

- Michelle

[Peaches503]

Hi All,

I have a question. I recently asked about the tTG testing, but apparently, that is not the test that my Dr. ordered. I think I may have already had that done. I called my Dr. to ask if the test he ordered would be affected by my gluten-free diet. His NP called me and said that no, being gluten-free would not, and I trust his knowledge of this because his wife has had celiac disease for 15 years, and he knows how serious this all is. So, my question is, what other kind of test could he be doing? Could it be the gene test? I'm just wondering if there may be another test out there besides the gene test because I think that if he were doing the gene test, he would have just told me, not to mention, our lab systems would probably have already had a gene test in their computer system. Any suggestions?

[KaitiUSA]

Peaches-Being gluten free will alter tests(unless it's a gene test)...when you are off gluten every so often they do blood tests to see if you are complying with the diet.

Otherwise, why does damage heal? Certainly not while your eating gluten...it's when you are off of it that will heal it. And same with antibodies, when you eat gluten the antibodies will attack it...there is not a need for these when you have no gluten to attack...

I would not believe that even if his wife has celiac disease.

What other tests have you had done before? There are a # of tests he could be doing. Maybe a gene test, has he done the EMA test yet?

[Darby]

. And same with antibodies, when you eat gluten the antibodies will attack it...there is not a need for these when you have no gluten to attack...

I'm trying to understand the antibody thing. Does this mean antibodies are a good thing or bad?

I think I'm having a brain fart! I got up too early this am to take dogs for a hike.

Darby

[celiac3270]

The antibodies don't do anything--are neither good, nor bad--but high levels of antibodies on a gluten-containing diet shows celiac disease.

It's the immune system cells (to be more specific, the T-cells) that attack the intestines. The gluten causes a chemical reaction, etc. and the t-cells attack the villi. When there's no gluten, the t-cells cease doing this.

[Darby]

The antibodies don't do anything--are neither good, nor bad--but high levels of antibodies on a gluten-containing diet shows celiac disease.

It's the immune system cells (to be more specific, the T-cells) that attack the intestines. The gluten causes a chemical reaction, etc. and the t-cells attack the villi. When there's no gluten, the t-cells cease doing this.

Is the only T-cells the tTG? What about the anti-Gliadins -- IgA and IgG?

[Peaches503]

Kaiti,

I'm not sure what test he is doing. I'm assuming that he's doing the gene test, otherwise, you're right, being gluten free would definitely affect test results. I'm not going to let my doctor tell me otherwise. I'm still waiting to hear from him about what test he is going to do. Thanks for all of your responses!

-Peaches

[jknnej]

Darby,

did you have your test yet? I thought you said Thursday? If so, how was it?

How are you feeling?