My test results vs. other people's

[Mnoosh]

This week my doctor told me that I tested positive for celiac. She ran the test for endomysium iga which was positive, and also the ttg iga which was 12. Anything higher than a 10 is a positive. I'm just wondering how some people have ttg levels in the 300's? Is that a different test and scoring system? Does this mean that I caught my celiac early? I think that's just my wishful thinking ?

[Kurasz]

Im wondering about this myself. My sister had a 272 and they called it a false positive.

[RMJ]

Tests made by different manufacturers do have different scoring systems.  And some people have higher levels of antibodies than others.

Kurasz, did your sister's docs just call it a false positive because it was high?  It is possible but that interpretation would worry me unless they had other evidence, such as a negative biopsy.

I used to work for a company that made allergy tests, measuring IgE antibodies.  My blood (we of course tested ourselves on everything) gave a high positive reading for cat, which we disproved with a skin test.  That was a genuine false positive.

 

 

 

 

[Kurasz]

i think it may have been because of a medication she is on. Not really sure. The clinic will only give her a partial copy of the test results which only tells the iga numbers. She demanded a full copy so she can find an expert to look at it, but they are refusing to give it to her. My guess is that they messed up the test by not properly diluting the solution.

[Gemini]

On 7/30/2016 at 3:16 PM, Mnoosh said:

This week my doctor told me that I tested positive for celiac. She ran the test for endomysium iga which was positive, and also the ttg iga which was 12. Anything higher than a 10 is a positive. I'm just wondering how some people have ttg levels in the 300's? Is that a different test and scoring system? Does this mean that I caught my celiac early? I think that's just my wishful thinking ?

The reason some have much higher antibody levels usually means they have gone longer with undiagnosed Celiac and they have more intestinal damage.  Although, funny  enough, levels do not always correlate to more damage because some people on here have tested negative or only slightly positive on blood work and had major damage on scope.  Autoimmune testing can be wonky sometimes.  Labs also use different assays and this is why reference ranges can be slightly different between tests/labs. They usually don't differ by much but having a tTg of 300 has nothing to do with reference ranges on lab testing. It means that person, most likely, has much more intestinal damage.

 

[Gemini]

On 7/31/2016 at 0:21 PM, Kurasz said:

i think it may have been because of a medication she is on. Not really sure. The clinic will only give her a partial copy of the test results which only tells the iga numbers. She demanded a full copy so she can find an expert to look at it, but they are refusing to give it to her. My guess is that they messed up the test by not properly diluting the solution.

No one in any medical field has the right to refuse to give someone paper copies of their testing results.  She needs to call them back and tell them that if they do not comply within a few days, they will be hearing from her lawyer.  She can lie on that one......she doesn't even need to actually have a lawyer to make that threat. 

Also, anyone with a testing result for Celiac Disease who scores that high needs to look into it deeper because that is not a false positive. People have false negatives but not false positives. tTg can be slightly elevated in the presence of other autoimmune diseases besides Celiac but it usually is a small to moderate increase.....not a 272!

[Kurasz]

On 8/2/2016 at 1:49 PM, Gemini said:

No one in any medical field has the right to refuse to give someone paper copies of their testing results.  She needs to call them back and tell them that if they do not comply within a few days, they will be hearing from her lawyer.  She can lie on that one......she doesn't even need to actually have a lawyer to make that threat. 

Also, anyone with a testing result for Celiac Disease who scores that high needs to look into it deeper because that is not a false positive. People have false negatives but not false positives. tTg can be slightly elevated in the presence of other autoimmune diseases besides Celiac but it usually is a small to moderate increase.....not a 272!

She is attempting to get the full copy. Thanks for your help.