Got Blood Test Results - No Idea What They Mean!

[Lissa]

So my doctor printed off my paper, said they results were negative, and sent me on my way. I have no idea what these things mean, and I'm a little disappointed my results were negative. (Lie - I'm way disappointed) What should I do now? My doctor referred me to a GI, but the waiting list is 2 years. Should I go for the biopsy? My doctor thinks its stupid I'm persuing Celiac, I don't know even she'll even let me do it. But anyways, the results:

Anti-Gliadin IgA Antibody 18KEU/L (less than 20)

Anti-Gliadin IgG Antibody 11KEU/L (less than 20)

Tissue Transglutaminase Iga Ab 8KEU/L (less than 20)

False negative results may occur in patients who are IgA deficient.

Celiac Disease Interpretation

Negative IgA Endomysial (IgA Transglutaminase) antibodies and normal IgA and IgG Gliadin antibodies rule out active Celiac Disease in virtually all cases and Dermatitis Herpetiformis in approximately 80% of cases.

[mftnchn]

GI referral is a two year wait? That's bizarre. Do you have any other options?

Some people here have had negative blood work and positive biopsy. So if you have symptoms I think you should keep pursuing the celiac question.

[Lissa]

GI referral is a two year wait? That's bizarre. Do you have any other options?

Some people here have had negative blood work and positive biopsy. So if you have symptoms I think you should keep pursuing the celiac question.

Oh sorry, my mistake. It's only 16 months. 16 months is the average wait to get to see the GI. Or so my doctor tells me. My mom told me it was 2 years, but I believe the doc.

[ravenwoodglass]

Have you done a gluten-free trial? Sometimes that is the best way to tell if gluten is a problem. There are a number of folks who are celiac but still have negative blood work, that can delay diagnosis for a long time. A gluten-free trial and challenge may be more informative for you. You don't need a doctors permission to try living gluten-free to see if it helps.

[lob6796]

So my doctor printed off my paper, said they results were negative, and sent me on my way. I have no idea what these things mean, and I'm a little disappointed my results were negative. (Lie - I'm way disappointed) What should I do now? My doctor referred me to a GI, but the waiting list is 2 years. Should I go for the biopsy? My doctor thinks its stupid I'm persuing Celiac, I don't know even she'll even let me do it. But anyways, the results:

Anti-Gliadin IgA Antibody 18KEU/L (less than 20)

Anti-Gliadin IgG Antibody 11KEU/L (less than 20)

Tissue Transglutaminase Iga Ab 8KEU/L (less than 20)

False negative results may occur in patients who are IgA deficient.

Celiac Disease Interpretation

Negative IgA Endomysial (IgA Transglutaminase) antibodies and normal IgA and IgG Gliadin antibodies rule out active Celiac Disease in virtually all cases and Dermatitis Herpetiformis in approximately 80% of cases.

Is it possible for you to get a second opinion? Where I live, and IgA of higher than 2.9 is a complete positive diagnosis of celiac, and an IgG of over 10 is a probable diagnosis of celiac with a follow biopsy ordered to confirm. Do you live in Canada? I'm just wondering because of the 16 month wait for a GI. The one downside to healthcare for everyone is long waits. I would still try to get s second opinion. If that isnt possible, I would go gluten free and see how you feel after a few months on it.

[mamaloca2]

So my doctor printed off my paper, said they results were negative, and sent me on my way. I have no idea what these things mean, and I'm a little disappointed my results were negative. (Lie - I'm way disappointed) What should I do now? My doctor referred me to a GI, but the waiting list is 2 years. Should I go for the biopsy? My doctor thinks its stupid I'm persuing Celiac, I don't know even she'll even let me do it. But anyways, the results:

Anti-Gliadin IgA Antibody 18KEU/L (less than 20)

Anti-Gliadin IgG Antibody 11KEU/L (less than 20)

Tissue Transglutaminase Iga Ab 8KEU/L (less than 20)

False negative results may occur in patients who are IgA deficient.

Celiac Disease Interpretation

Negative IgA Endomysial (IgA Transglutaminase) antibodies and normal IgA and IgG Gliadin antibodies rule out active Celiac Disease in virtually all cases and Dermatitis Herpetiformis in approximately 80% of cases.

My nutritionalist explained to me that you can have neg. results for celiac but be gluten intolerant instead. He explained that the two act the same but the difference is that in Celiac the villi are destroyed, and if you are gluten intolerant your intestines are inflamed. Both lead to malabsorbtion just differ in the mechanisms that cause it. In the case of gluten intolerance, it can be tested by checking ("cytokine"?) levels. I don't know if that's the right exact word or not. Anyway, my daughter was also supposedly neg for Celiac, so he is running food allergy blood tests on her which should hopefully tell us if she's gluten intolerant. He seems to know what he's talking about...hope this helps.

[CarlaB]

I'd go on the diet. If you get better, you know you have a gluten problem ... whether it's celiac or gluten intolerance doesn't matter.

If you don't get better, start looking for what else may be causing your problems.

I wonder why they didn't test your total Iga to see if you were deficient ... they even wrote on the test that some are deficient ... that's something they can test for.

[Lissa]

Is it possible for you to get a second opinion? Where I live, and IgA of higher than 2.9 is a complete positive diagnosis of celiac, and an IgG of over 10 is a probable diagnosis of celiac with a follow biopsy ordered to confirm. Do you live in Canada? I'm just wondering because of the 16 month wait for a GI. The one downside to healthcare for everyone is long waits. I would still try to get s second opinion. If that isnt possible, I would go gluten free and see how you feel after a few months on it.

Haha, yes, I live in Canada.

[Lissa]

I have a question....are the results different in Canada then the States? (I'm assuming so)

and I would like to point out that my doctor is an idiot. She said that celiac and gluten intolerance are the same thing.

[CarlaB]

I don't think there's a universal test. There should be a reference range on your results that tell you what is normal.

[Lissa]

I don't think there's a universal test. There should be a reference range on your results that tell you what is normal.

I think that's what the (less than 20) means.

[CarlaB]

I think that's what the (less than 20) means.

Yeah ... I didn't scroll back up when I posted to see if the range was there. I'd go with the reference range the lab set. It can vary.

[SpikeMoore]

Hi everyone

I get the celiac newsletter online as a result of registering for this site. I think it was in the one from May 9 that summarizes the rate of false negatives from a study in the April 2004 Journal of digestives diseases and sciences.. It differentiates between total villus atrophy and partial atrophy. I can't remember exactly, but for the patients with partial atrophy, blood work was positive for celiac only 30% of the time. The rate of false negatives for total atrophy was also very significant. The summary is that blood work is not nearly as accurate as doctors are lead to believe it is.

I had the same response from my doctor. He said "the blood work was negative, therefore you are not celiac." I chose not to go for a referral to a GI, because in the end I asked myself what is important. Having someone in a lab coat say "yes, you are right, don't eat gluten, it's bad for you" after another 6 months to a year+ of waiting and postponing potential healing, or trying it to see how you feel and if you feel better, you have your answer.

I've never felt better and won't look back.

[mamabear]

This is why everyone gets bent out of shape! You know something is wrong....the tests are negative..you wait 2 months to 16 months(geographically speaking!) to get a referral to a GI with NO guarantee they will biopsy you.....so you choose to go gluten free....Maybe you feel great for a few months, but if you get sick again, do you think your own diagnosis was wrong.....or do you keep searching for the hidden gluten???????? Will your PCP or the GI try and unravel what is kinked up??

There are no easy answers here. Waiting 16 months for a GI seems unbearable to me. With 200+ symptoms of celiac disease, it is hard to keep pushing for the 1% diagnosis.....if all the serologic tests were negative. BUT! Listen to your gut feelings(all puns intended)....and with your national health service limitations......I'd be inclined to go ahead and try the diet.

BTW, they(GI traditionalists) are recently understanding there HAS to be a category of non-biopsy positive gluten sensitives non- celiac....it will make the GI's job all the more complex and take them longer to unravel...well, I think you know where I'm going with this. They don't cope if they can't scope! You can quote me on that!

[aikiducky]

They don't cope if they can't scope! You can quote me on that!

Love that! And I will quote you!

With such a long waiting list I would be inclined to try the diet, too.

Pauliina

[bugstabber]

I'd go on the diet. If you get better, you know you have a gluten problem ... whether it's celiac or gluten intolerance doesn't matter.

If you don't get better, start looking for what else may be causing your problems.

I wonder why they didn't test your total Iga to see if you were deficient ... they even wrote on the test that some are deficient ... that's something they can test for.

So, what would a lab range for total IgA be?

[natalie]

I live in Canada as well. In my area ( Waterloo Ontario) I waited about 7 months to the the GI doctor and then 4 weeks to have the scope. It was well worth the wait because my scope was positive. Because my daughter was diagnosed at 2 with celiac the doctor took me a little more serious. I had all negative blood work except for the Igg was slightly positive. Do you have anyone in your family who has celiac?

Have you tried the Entrolab test? I had that and my numbers were through the roof, I think that those results helped the GI doctor to do the scope.

Good Luck

Natalie

[Lissa]

WOW! Thanks all, for your help. I really appreciate it. However, I'm in need of some help, please....

I'm not sure I'm Celiac anymore. Lately, I've still been feeling like crap but my runs arent as bad as usual. I'm really confused. However, all the gluten I've been eating lately has been a bagel at breakfast, but shouldn't I be getting the runs from that? My blood test was negative, maybe that's telling me something. Perhaps I'm looking at the wrong thing. So my question...

If I am not Celiac and I try the diet, will I be messing up my body? (cutting gluten out, seeing it doesn't help, then going back to gluten?)

And can anyone tell me what some proper Celiac are? I can tell you I get the runs (which I'm not getting as often) but what else could be affecting me?

Whats the difference between gluten intolerance and Celiac?

What kinds of foods can I eat on a gluten free diet? Which are the major not-commonly-know-but-are-in-fact-glutenized products?

How much is an Enterolab test?

Thanks, everyone. I'll be happy with any help you can give me.