Old TTG test results, help!

[tickador]

Hi everyone,

I am 43 and have had digestive issues for my whole adult life. My first testing was in my 20s, because of chronic diarrhea and abdominal pain. I can't remember which celiac panel I was given--this was the early 2000's and I don't thing the IgA-TtG test was standard yet. My dismissive doctor at the time said my results were inconclusive, and given my age and that I didn't have weight loss or growth problems as a child (though I was anemic), she diagnosed me with IBS. Fast-forward to two kids later, and after each delivery I quickly developed worse and worse GI problems. Diarrhea almost all the time, floating stool, etc. I felt like a hypochondriac and decided not to talk to my doctor at first, went off gluten, and felt so much better within weeks. But, without a diagnosis I convinced myself it was in my head and went back to occasional gluten (mmm donuts). Felt crappy, tried to blame it on other things. 

Here's where my real question begins. I had a new doctor in a much better system (cross-country move), and in 2011 had an IgA test done. This was when I was eating some gluten, but not nearly as much as I used to. My total IgA was normal, and my IgA-TtG was 8.0. At the time, the lab's reference range was anything <20 was negative. But the same lab (Duke hospitals) later changed to <4 being negative, and 8.0 being the upper end of weak positive. And everything I've read says both 1) go with your lab's reference ranges, but also, 2) any detectable TtG is a possible positive. That seems to contradict itself, as a number of 8.0 is clearly detectable. I know they may have changed testing methods (does anyone know about Duke?), but I don't understand how there could be such a big difference. My new primary care doctor would be happy to run tests, but I've now been gluten free for 3 years and would have to do a challenge and I'm worried about being totally miserable for 8 weeks. I do have the HLA-DQ8 genotype, so celiac is possible.

The reason I'm stressing over this now is that twice in the last two months I've had horrible digestive incidents that I'm quite sure were me getting glutened. My symptoms were absolutely classic, and awful. The first time I accidentally ate rice pilaf that was half orzo pasta. The second time was a few days ago and I think my Moe's tortilla chips were contaminated from the fryer. I've never thought I had to worry about cross-contamination. Now I'm wondering if a definitive diagnosis, even at the age of 43, would help give me peace of mind as well as let me say "I have celiac" instead of getting the "sure, you're gluten intolerant" side-eye.

So... thanks for reading. If you have any knowledge/advice about either the 2011 test and reference ranges OR advice/opinions about whether a miserable gluten challenge would be worth it, I'd appreciate your 2c or more!

[cyclinglady]

Welcome!

You have to go by the original lab’s reference range at the time the test was done.  Reference ranges vary from lab to lab.  There is no way you can assume that you had a positive.

You can either stay gluten free or do the gluten challenge which takes 8 to 12 weeks for the blood panel:

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Ask for the complete celiac panel if you do the challenge:

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The TTG tests can be elevated slightly for many other reasons.  It is why when you exceed the lab range, your doctor should order an endoscopy for final confirmation as the lab tests are not perfect.  

[RMJ]

Sometimes medical centers will change what lab they send samples to.  My doctor used to use a lab with a cutoff of 19.  Now they use a lab with a cutoff of 3.  Unlike many blood tests, the celiac tests use units which vary from lab to lab.

[tickador]

Thanks for the answers so far! Do you think the misery of a gluten challenge is worth it?

[cyclinglady]

Only you can decide if the challenge is worth it.  I have a firm diagnosis but my hubby does not.  He went gluten free per the poor advice (not getting tested for celiac disease first) of two medical doctors.  It worked.  He has been gluten free for almost 20 years.  He will say that I get way more support from family, friends and medical, but that does not deter him.  He refuses to do a challenge (we like being able to pay our bills).  

Again, you know your situation best.  

[Guest]

On 10/9/2018 at 6:30 PM, cyclinglady said:

Only you can decide if the challenge is worth it.  I have a firm diagnosis but my hubby does not.  He went gluten free per the poor advice (not getting tested for celiac disease first) of two medical doctors.  It worked.  He has been gluten free for almost 20 years.  He will say that I get way more support from family, friends and medical, but that does not deter him.  He refuses to do a challenge (we like being able to pay our bills).  

Again, you know your situation best.  

Perfect Advice. 100% agree with cyclinglady