celiac testing

[Anonymous]

Im overseas and have been eating bread in part so I Can do Celiac testing. I don't trust the doctors here 100% so I am turning to you all for advice. I am pretty sure I am at least gluten sensitive. Would screening transglutaminasa (IgA) be sufficient to diagnose CEliac?

[Anonymous]

No, there is a high incidence of false reports or you can be IgA deficient, like I am, which would make any results invalid. An endoscopy is a better test, but even that isn't 100%

[Anonymous]

The blood rest for the antibodies should have a total serum IgA which will show whether you are IgA deficient. If done that way, the test has a very low rate of false negatives and a relatively low rate of false positives. Yes, an endoscopy is more accurate, but not necessary for most people. As I'm sure you know, none of this will show whether you are "sensitive" to gluten.

[Anonymous]

FWIW, I had a doctor completely dismiss iga and igg testing and say that there would be no diagnosis without the endoscopy. My igg levels were through the roof, but I still have no clue why.

[Anonymous]

Anonymous wrote:The blood rest for the antibodies should have a total serum IgA which will show whether you are IgA deficient. If done that way, the test has a very low rate of false negatives and a relatively low rate of false positives. Yes, an endoscopy is more accurate, but not necessary for most people. As I'm sure you know, none of this will show whether you are "sensitive" to gluten.

OP here- so if I do the screening transglutaninasa test, would that then give me an answer (ie include the IgA Which would show if I am IgA deficient)?
I wouldn't want to have an endoscopy if it's not necessary, clearly...

Despite the fact thatI know I'm at least sensitive, I've been on gluten for several months and am eager to get off, so knowing what tests I can do now (and take advantage of the fact that I've been on gluten) is important to me.

[Anonymous]

You might want to go to a Celiac support group meeting and learn what others did:
http://www.csaceliacs.info/find.jsp

I agree with you that it's better to know what you should be testing for now that you're on gluten.

[Anonymous]

Anonymous wrote:

Anonymous wrote:The blood rest for the antibodies should have a total serum IgA which will show whether you are IgA deficient. If done that way, the test has a very low rate of false negatives and a relatively low rate of false positives. Yes, an endoscopy is more accurate, but not necessary for most people. As I'm sure you know, none of this will show whether you are "sensitive" to gluten.

OP here- so if I do the screening transglutaninasa test, would that then give me an answer (ie include the IgA Which would show if I am IgA deficient)?
I wouldn't want to have an endoscopy if it's not necessary, clearly...

Despite the fact thatI know I'm at least sensitive, I've been on gluten for several months and am eager to get off, so knowing what tests I can do now (and take advantage of the fact that I've been on gluten) is important to me.

My GI doctor was satisfied with the results of that test and did not think I needed an endoscopy. Before the results came back though, he thought there was a good chance that I had Celiac. It didn't even cross my mind until he mentioned it. Again, he did say that you don't REALLY know unless you do the endoscopy, but after my test came back negative, we began exploring different causes for my symptoms. Just to be specific, the blood test measured serum IgA and Tissue Transglutam AB (IgA). I checked out some reputable sites regarding the test around the time I took it and almost all (if not all) were clear about how reliable it is. Good luck!

[Anonymous]

The IgA panel should be sufficient for an initial test (and results generally come back quickly.) That's what the Drs ran on both my children and myself, and there's some discussion in the literature about accepting a sufficiently raised IgA result without the need for further testing, although at present the endoscopy remains the standard for an 'official' diagnosis.

FWIW, in our case my eldest came back positive on her panel and had a subsequent endoscopy to confirm celiac, my other child and I both came back negative. Although my younger child's IgA was just below the lower bound for normal amounts, the Drs felt it was still sufficiently high enough to trust the negative IgA results (it was detectable, just *slightly* below the normal range). And I trusted that result as neither of us were experiencing symptoms - I just wanted to get the rest of us tested while still on a gluten-filled diet since we moved our whole house GF with my eldest's diagnosis.

[Anonymous]

Anonymous wrote:The IgA panel should be sufficient for an initial test (and results generally come back quickly.) That's what the Drs ran on both my children and myself, and there's some discussion in the literature about accepting a sufficiently raised IgA result without the need for further testing, although at present the endoscopy remains the standard for an 'official' diagnosis.

FWIW, in our case my eldest came back positive on her panel and had a subsequent endoscopy to confirm celiac, my other child and I both came back negative. Although my younger child's IgA was just below the lower bound for normal amounts, the Drs felt it was still sufficiently high enough to trust the negative IgA results (it was detectable, just *slightly* below the normal range). And I trusted that result as neither of us were experiencing symptoms - I just wanted to get the rest of us tested while still on a gluten-filled diet since we moved our whole house GF with my eldest's diagnosis.

Sorry to be dumb, but is the "IgA panel" you mention as sufficient for the initial test the same as the screening transglutaminasa (IgA) I am being told is the initial test?

And, should I continue to be on gluten while awaiting the results of the test?

[Anonymous]

Anonymous wrote:

Anonymous wrote:The IgA panel should be sufficient for an initial test (and results generally come back quickly.) That's what the Drs ran on both my children and myself, and there's some discussion in the literature about accepting a sufficiently raised IgA result without the need for further testing, although at present the endoscopy remains the standard for an 'official' diagnosis.

FWIW, in our case my eldest came back positive on her panel and had a subsequent endoscopy to confirm celiac, my other child and I both came back negative. Although my younger child's IgA was just below the lower bound for normal amounts, the Drs felt it was still sufficiently high enough to trust the negative IgA results (it was detectable, just *slightly* below the normal range). And I trusted that result as neither of us were experiencing symptoms - I just wanted to get the rest of us tested while still on a gluten-filled diet since we moved our whole house GF with my eldest's diagnosis.

Sorry to be dumb, but is the "IgA panel" you mention as sufficient for the initial test the same as the screening transglutaminasa (IgA) I am being told is the initial test?

And, should I continue to be on gluten while awaiting the results of the test?

Here's a link on the celiac panel: https://www.questdiagnostics.com/testcenter/testguide.action?dc=TH_CeliacPanel

As far as I know the big deal here is to test for the tTG IgA aantibodies *and* total IgA just to make sure that if you don't have the celiac specific antibodies it's not because you're IgA deficient.

In terms of staying on gluten after the blood test, you should be fine to stop eating it. Your blood stream will clear the antibodies relatively quickly (which is why you need to be eating it for the blood test), but it takes a while for the intestines to heal the damage (they say 6 months, but I think they actually truly heal in only like 50% of diagnosed adults), so should the IgA come back positive and you need an endoscopy, a few days/weeks without gluten likely wouldn't heal your intestines enough to get a 'false' negative by endoscopy. I know our Ped GI cleared us to put our daughter on a GF diet prior to the endoscopy for exactly that reason - she understood that I didn't want to wait longer than necessary to do something to help my child. And I think we got in for the endoscopy 3 weeks post bloodwork?

Should you need an endoscopy I'll also add that you sometimes need to wait for the pathology report to know for sure. Probably since our daughter was young the damage wasn't visible to the naked eye, and the report from the Dr was that things looked normal, but in pathology they could see the classic signs of villious atrophy that signaled celiac.

[Anonymous]

My child was diagnosed with an IGA TTG, with very high positive results. He had a subsequent endoscope that was inconclusive, but the doctor based his determination on the original test.

[Anonymous]

This is the OP. Thanks, everyone, for the assistance. I had a blood test this morning and they took a bunch of things... hopefully that will give some sort of answers.

I am a little nervous as I have ben sick for the last month with a cough and cold, and now have a sinus infection and fever. One of the sites I read said that if your immune system is down, the results may come back negative even if you are positive. Hope t hat doesn't happen to me...

[Anonymous]

Can anyone reccommend a celiac specialist in nova? Looking for a gi doc. Just moved here and was dx'd with celiac 3 yrs ago.

[Anonymous]

Anonymous wrote:Can anyone reccommend a celiac specialist in nova? Looking for a gi doc. Just moved here and was dx'd with celiac 3 yrs ago.

Fasano used to be located in Maryland then relocated relatively recently to Boston. I wonder though if someone there could give you a referral: http://www.celiaccenter.org/contact.asp

[Anonymous]

You might also be able to find some good referrals from these groups:
http://www.wegmans.com/webapp/wcs/stores/servlet/ProductDisplay?storeId=10052&partNumber=UNIVERSAL_22716

http://celiacsonline.com/?page_id=36