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Conflicting Test Results - Drs. Say It's Not Celiac

earthmama2k

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earthmama2k Newbie
earthmama2k
Posted

I went to my family doctor at the beginning of February because I have been experiencing IBS like symptoms off and on for years. She agreed that it sounded like IBS, but ordered a blood test to check for Celiac. When it came back positive, she referred me to the Celiac Clinic at Mayo (luckily I live in MN less than an hour away from Rochester).

To make a long story short, my test results are very conflicting.

First round of labs:

IgA Tissue Transglut <1.2 (negative)

IgG Gliadin <1.0 (negative)

IgA Gliadin 65.2 (strongly positive)

Reticulin Ab(s) - negative

Endomysial Ab(s) - negative

Interestingly, I also came back positive for Rheumatoid Factor (41 - normal: <15).

I was scheduled for an Endoscopy & Flexible Sigmoidoscopy. Biopsies from both came back normal (no damage). Visual examination during the scopes was also 'normal'.

On the second round of labs, I came back positive for HLA-DQ2 and negative for HLA-DQ8. My 'Celiac markers' (whatever that means - I wasn't able to get a clear explanation over the phone) were negative. Vitamin D was 'low'. Iron was 'good'.

My official diagnosis? IBS (with a possible susceptibility towards Celiac Disease). I was, however, told it wouldn't hurt to try a gluten free diet for a while and see if it resolves any of my symptoms.

I am confused. The Celiac specialists obviously don't think that I have celiac disease, but I'm symptomatic. I don't have any family history of Celiac that I'm aware of (though my mom has similar symptoms, as did my grandmother, and I have a son with Crohn's who's been tested for Celiac and is also negative). Is it possible that this is simply a gluten 'sensitivity'?

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GFinDC Veteran
GFinDC
Posted

Well, the anti-gliaden is a problem. Just gluten sensitivity is a problem too. There are a whole bunch of other organs in the body that the immune system can attack besides the intestine. So gluten sensitivity can mean that your intestine is going to be ok but the rest of your body is possibly going to have a fight on it's hands. It really makes sense to give the gluten-free diet a try for 3 or so months. Read up on the threads here about getting started. That anti-gliaden number is there for a reason, and it isn't something to ignore.

earthmama2k Newbie
earthmama2k
Posted
  • Author
On the second round of labs, I came back positive for HLA-DQ2 and negative for HLA-DQ8.

I just received a message from my doctor saying that she misinterpreted my genetic tests. I'm actually positive for HLA-DQ8 - not DQ2. Not sure if that makes any difference or not, but there it is. She seemed to think it made it even less likely that I would go on to develop full blown Celiac Disease.

Is it possible that the IgA test result was a false positive? Because that is what they are suggesting now...

Jestgar Rising Star
Jestgar
Posted

There are a whole bunch of other organs in the body that the immune system can attack besides the intestine. So gluten sensitivity can mean that your intestine is going to be ok but the rest of your body is possibly going to have a fight on it's hands.

This was well put.

There are no identified "Celiac genes". Having one version of HLA genes versus another may show that you are more likely to get the disease, but it's based on association. A person with blond hair is more likely to have blue eyes because the two are associated. But having blond hair doesn't cause you to have blue eyes, and it isn't necessary to have blond hair in order to have blue eyes.

earthmama2k Newbie
earthmama2k
Posted
  • Author

Thank you. I do have a basic understanding of genetics, and I realize that simply having one of the genes associated with Celiac doesn't necessarily mean I have (or will develop) the disease. I guess what I'm trying to find out here is, A.) Is it possible that the specialists are wrong and I really do have Celiac? Or, if that is unlikely, B.) Is there any other reason (besides gluten sensitivity) for having a positive IgA result?

WheatChef Apprentice
WheatChef
Posted

A) It's certainly possible, the blood tests are much better at not giving false-positives than they are at not giving false-negatives and unless they removed your entire small intestine for the biopsy then they could have missed it. From the sound of it, it doesn't sound like it matters so much in your case because based on the gliadin tests you have a gluten problem anyways which means that you have to seek treatment exactly as if you had celiacs. When a Doctor says you do or don't have celiacs they're only referring to the presence or absence of specific intestine damage and it is only one specific form of gluten sensitivity.

B ) No. This test is also very good at not giving false-positives.

nora-n Rookie
nora-n
Posted

actually, they use the DQ2 and DQ8 tests to rule in or out the cance of celiac disease. I know of several people with not-so -clear tests, ans symptoms, who got the diagnosis after they ahd a positive test for either DQ2 or 8.

The Dq8 really means something in this connection.

(=symptoms plus the high antigliadin test)

the only reason they dod not diagnose you yet, is the negative tissue transglutaminase test and probably the negative biopsy.

The biopsy is the gold standard, but celaic is patchy and they can easily miss the right spot.

Also, the low D is caused by malabsorption.

were you by ansy chance on steroids, any dose? They cause the biopsy to turn negative despite of even severe celiac. (and probably the ttg test too, since it is dependant on that there is a lot of tissue damage)

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  • 2 weeks later...
earthmama2k Newbie
earthmama2k
Posted
  • Author

Nope. I was not on any steroids at the time of the test, nor have I ever been.

Thanks, everyone, for the input. I have started my gluten free trial. We'll see how it goes.

jenlex Rookie
jenlex
Posted

After conflicting information received from my doctor... I insisted on a 2nd opinion and am going to see a GI specialist. I like my doctor, but I do not feel that she is up to date with the most current research. My son recently (Jan.) tested + TTA IgA 25.5. Because this number was a weak +, she said he doesn't have celiac. I took him to a pediatric GI, had a biopsy, and they confirmed moderate/severe celiac.

After that, I had the antibody testing and genetic testing for myself. My antibodies were all near zero but I was pos. for DQ2/DQ8. She "diagnosed" me with celiac based on the DNA even though my antibodies were within normal ranges. The way I understand this... no diagnosis can be made without the biopsy...my pos. genetic test only indicates that I may develop celiac, but it isn't a sure thing...

Furthermore, the pediatric GI I took my son to laughed when I told her that my regular MD said my son had a "weak pos." and therefor "not celiac". The GI said any pos. antibody indicates a problem as the antibodies are very specific to gluten. It is kind-of like taking a pregnancy test and then interpreting the results as "weak pos" and therefor "not pregnant". Makes sense when you look at it like that...

Anyway, my point is that a 2nd opinion might be a option if you are not 100% confident in your MD and/or test results.

nora-n Rookie
nora-n
Posted

jenlex, interesting story.

Yes, the first doctor was mad when she says a weak positive ttg is not celiac.

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