Interpreting Blood Test Results...Taken 2 Weeks gluten-free

[Anya-Valkyrja]

So, contrary to the advise of literally every medical outlet on the planet, with my PCP's (reluctant) approval, I went ahead with the antibody test after having eliminated gluten for a period just shy of two weeks. Irrational as it was, I actually quit gluten on a whim after reaching my wits' end with constantly feeling inexplicably awful, and never in a thousand years would I have expected 90% of my symptoms to evaporate with one dietary change.

Upon the discovery that my beloved pizza and waffles were the sly perpetrators of chronic, worsening malaise, I immediately scheduled an appointment for a test and treated myself to a couple days' worth of fluffy, glutenous torture to try and work it back into my system before the draw.

Now, I received my results today (via the online portal), and, much to my dismay, instead of receiving the "full panel" that most sites recommend, I got the condensed version. Below is ALL the information it provided.

IGA
Your Value: 218 mg/dL
Standard Range: 82-453 mg/dL

Tissue Transglutaminase Antibody IgA
Your Value: 15 Units
Standard Range: <20 Units

Though I understand at face value this is an obvious negative, I can't help but wonder how much those two weeks may have lowered the numbers. There doesn't seem to be much information on those who've tested only briefly after quitting.

Even more baffling, I've seen on sources like Mayo Clinic that anything above 10 is considered positive. 10? Really? Cause that would change EVERYTHING. Hell, I think I even read somewhere that virtually any number is cause for suspicion.

At this point, like everyone else who's stared down the barrel of a gluten challenge, my insides (literally) lurch at the thought of returning to a "normal" diet, and I don't see any possibility of a biopsy during the whole pandemic debacle. On the other hand, returning to gluten now would assuredly be easier (and shorter-lived) than in the future, and a proper diagnosis (if any) would be beneficial to myself as well as a family who takes me for a hypochondriac. Though I probably will have to accept the results for now, I plan to avoid gluten until life allows a retest.

I primarily just want to gauge whether a few molecules of gluten would be a minor disturbance or an outright death threat. And for the record, I do have a few "risk" alleles on one of the HLA genes, so genetically, Celiac is possible.

Any similar experiences? Otherwise, how would you interpret this information? Thanks in advance!

[RMJ]

I can answer one question. Each manufacturer uses their own units, thus their own ranges.  You unfortunately can’t compare results between labs.  

[Anya-Valkyrja]

  On 5/5/2020 at 6:10 PM, RMJ said:

I can answer one question. Each manufacturer uses their own units, thus their own ranges.  You unfortunately can’t compare results between labs.  

Expand Quote  

Ah, that makes so much more sense! I would have thought something like that would be standard. Good to know; thank you.

[cyclinglady]

While the TTG tests catch most celiacs, they do not catch all (like me).  I test positive only to the DGP IgA tests, not even the EMA and not even in repeats,  and I am biopsy-confirmed and biopsy-healed.  And then there are seronegative celiacs.  I think it is about 10% of celiacs.  

If you feel better on a gluten free diet, then I encourage  you to stick with it. Consider retesting if you find that you are doubting your self-diagnosis or you can not adhere to the diet.  This might be prudent based on the current pandemic.