Curious If It Really Is Celiac?

[LauraW]

Now I am wondering if this might not be celiac. I am just sooo confused. Okay I am trying to recall what all the dr told us on Thurs (before biopsy) and wondering what other dr's have said about blood levels. First off here were her blood levels which were done by Labcorp:

Antigliadin Iga 4 (0-4 negative, 4 & up is positive) = negative (just barely)

Antigliadin Igg 33 (0-9 neg, 9 and up is pos)= very positive

ttg Iga Less than 1 (0-3 neg and 3 and up pos)=negative

ttg Igg Less than 1 as well (0-3 neg and 3 and up pos)=negative

Immunoglobin A Serum 49 (70-400 negative)=positive

Endomysial Antibodies Iga negative

My first question to him was, "isn't the ttg pretty much the most accurate way to determine celiac via blood, b/c that is what I am reading everywhere on line". His response was "alot of children don't produce those antibodies yet, therefore we look at the antigliadin levels and her Igg was very elevated and her immunoglobin was positive as well". He said that those two usually go hand in hand with diagnosing celiac, however, she may just have elevated levels and not celiac, that is why he recommended biopsy. Okay, fine. After the procedure, he says "well usually when it is celiac the intestines will look like linoleum and be very smooth, her's on the other hand looked quite normal, on the flip side, she may have celiac b/c she is only 2 there is not any damage yet". Then I ask "what does your instinct tell you at this point?" He said "if I had a hundred dollars, I would bet $70 that it is celiac". Now, 2 days later, I am thoroughly confused. Just curious what other dr's have said to others in this situation? Thanks for the help.

Laura

[Matilda]

...

[Aerin328]

Laura,

I'm relatively new to this celiac thing too. I had two doctors tell me that elevated Antigliadian IgG in the blood didn't mean squat; and then I went to a doc who apparently is "specialized" in celiac's and he said elevated Antigliadin IgG almost always means celiac's disease when accompanied by symptoms (even if blood IgA is not elevated). Well, I wanted further proof... so I went to Enterolab and had their thorough stool test performed. My IgA was elevated in my stool (but it had not been in my blood!). Enterolab definitely deduced I was having an immune reaction to gluten. After hearing it from two sources I've gone gluten free and I'm definitely healing. So from what little you write about your situation, I would bet on your doctor's "70 cents on the dollar"; meanwhile perhaps consider going to www.enterolab.com. Hope you get to the bottom of it!

Christian

[Rachel--24]

To me the results look like IgA deficiency. That would mean the anti-gliadin IgA would likely be higher than 4 and the results of the tTG IgA would also be inaccurate.

It looks like your child isnt producing enough IgA which isnt uncommon amongst Celiacs. What did your Dr. say about this??

[nikki-uk]

Two things really.

The blood tests for celiac disease are notoriously unreliable in small children

The bowel often' looks' normal to the naked eye - but the biopsies are looked under an extremely powerful microscope so can pick up slight changes.

With both my hubby and Son the doc said the bowel 'looked' normal - but both actually had villous atrophy which was more apparent under the microscope.

Hope that helps

[LauraW]

Laura,

I'm wondering about the "immunoglobulin A serum" of 49, which is below the normal range. Did your doctor mention IgA deficiency? In people who don't make normal amouts of IgA the only results that come back positive are IgG's.

Best wishes,

Matilda

Yes, he did say she is Iga deficient and since the immunoglobin was positive as well, he suspected celiac. What does it mean to be Iga deficient? I also showed him my test results which were:

antigliadin Iga 5=positive

Antigliadin Igg 17=positive

no other tests were run on me. I think b/c my o.b. ordered them (I am pregnant) and they just didn't realize to do anything else. He said my results only showed half the picture and that he wouldn't know what to do with only having this, so I guess I need to go get the rest of the panel as well. Now, isn't it odd that me and my daughter having correlating Iga and Igg antigliadin levels???? Except her antigliadin Igg was much higher than mine. This is quite confusing....

Laura

[tarnalberry]

Antigliadin Iga 4 (0-4 negative, 4 & up is positive) = negative (just barely)

Antigliadin Igg 33 (0-9 neg, 9 and up is pos)= very positive

ttg Iga Less than 1 (0-3 neg and 3 and up pos)=negative

ttg Igg Less than 1 as well (0-3 neg and 3 and up pos)=negative

Immunoglobin A Serum 49 (70-400 negative)=positive

Endomysial Antibodies Iga negative

I'd say you have a good, thorough, doctor who thinks through things!

1) She's 2 - and he's right that blood tests at 2 and under are notoriously inaccurate. She may not yet have enough intestinal damage for the antibodies to make it into the bloodstream, or not yet producing enough antibodies to register as positive on those tests. Borderline tests in the young, when those factors are a consideration, are less borderline than they would be in other situations.

2) Her serum IgA tests are low - she's IgA deficient. That means that the normal range for positive/normal does not apply to her. It's like asking someone with a bottle of water if they have a lot of water. Well, if they're carrying around a big two liter water bottle, if they say yes, you expect them to have more than a liter of water. But if they're carrying around a little tiny half liter bottle of water, they can say yes when it's almost full, and still have less than half a liter. So they both have "a lot of water" (the equivalent of saying they're both producing a lot of IgA antigliandin antibodies, in this analogy), but because the capacity of their water bottles is different (the equivalent of saying one person is IgA deficient or not, in this analogy), they have different absolute numbers. This is why you can't look at the IgA antigliandin test without knowing whether or not the person tested is IgA deficient - it's a strict numbers comparison (that's all the actual test can measure), when the accurate analysis of the test requires a relative comparison. Bottom line? Nearly positive for anti-gliandin IgA on the non-IgA-deficient scale is pretty much a positive on the IgA-deficient scale.

3) The tTg IgG antibody test is a good marker for intestinal damage, which is why doctors like to use it for a Celiac test. (In their minds, damage = celiac.) Not everyone accrues damage at the same rate, particularly at that age. The tTg IgA test has the same issues as the one mentioned in 2 above.

The thing to remember here is that while we say that having celiac is like being pregnant, you are or you aren't, diagnosing celiac is not like 'diagnosing' pregnancy. It is very far from a cut and dry process. There's no single test, no obvious set of questions, no single answer to look for. It can be very complicated to diagnose. At this point, you have an answer - it's not black and white, but it's a lot clearer than many people get. The path forward is fairly clear; try the diet, to the letter, for at least a month or two, and see how she does on it. Be strict about the diet, and keep track - recording in a notebook if need be - of her symptom improvement. Your doctor may even want to do followup bloodwork to see if she improves. Both symptom improvement and numeric improvement in the bloodwork are strong additional diagnostic tests.

[LauraW]

I'd say you have a good, thorough, doctor who thinks through things!

1) She's 2 - and he's right that blood tests at 2 and under are notoriously inaccurate. She may not yet have enough intestinal damage for the antibodies to make it into the bloodstream, or not yet producing enough antibodies to register as positive on those tests. Borderline tests in the young, when those factors are a consideration, are less borderline than they would be in other situations.

2) Her serum IgA tests are low - she's IgA deficient. That means that the normal range for positive/normal does not apply to her. It's like asking someone with a bottle of water if they have a lot of water. Well, if they're carrying around a big two liter water bottle, if they say yes, you expect them to have more than a liter of water. But if they're carrying around a little tiny half liter bottle of water, they can say yes when it's almost full, and still have less than half a liter. So they both have "a lot of water" (the equivalent of saying they're both producing a lot of IgA antigliandin antibodies, in this analogy), but because the capacity of their water bottles is different (the equivalent of saying one person is IgA deficient or not, in this analogy), they have different absolute numbers. This is why you can't look at the IgA antigliandin test without knowing whether or not the person tested is IgA deficient - it's a strict numbers comparison (that's all the actual test can measure), when the accurate analysis of the test requires a relative comparison. Bottom line? Nearly positive for anti-gliandin IgA on the non-IgA-deficient scale is pretty much a positive on the IgA-deficient scale.

3) The tTg IgG antibody test is a good marker for intestinal damage, which is why doctors like to use it for a Celiac test. (In their minds, damage = celiac.) Not everyone accrues damage at the same rate, particularly at that age. The tTg IgA test has the same issues as the one mentioned in 2 above.

The thing to remember here is that while we say that having celiac is like being pregnant, you are or you aren't, diagnosing celiac is not like 'diagnosing' pregnancy. It is very far from a cut and dry process. There's no single test, no obvious set of questions, no single answer to look for. It can be very complicated to diagnose. At this point, you have an answer - it's not black and white, but it's a lot clearer than many people get. The path forward is fairly clear; try the diet, to the letter, for at least a month or two, and see how she does on it. Be strict about the diet, and keep track - recording in a notebook if need be - of her symptom improvement. Your doctor may even want to do followup bloodwork to see if she improves. Both symptom improvement and numeric improvement in the bloodwork are strong additional diagnostic tests.

Thanks for the info Tiffany! It really helps. Yes, I was very impressed with her dr. He not only came out to the waiting room twice to check on us to let us know they were a little behind, but he took the time to go over my blood results and answer a ton of questions that I had for him. And he was there when they had to put the IV in and based on my past experiences with surgeries, sometimes you don't even see the dr, b/c he doesn't come in until after you are under. After the procedure was over, he immediately came out to find us. He is quite young himself with a 3 yr old and 1 year old, so he was in tune with how emotional we were.