Follow up to my introduction- and sorry it was a long one I wrote before!!

[AmericanaMama]

Just to recap my situation, I've had ongoing issues with nerve pain, paresthesia, joint and muscle pain, etc. That's been going on for a year. After all the various specialists chimed in, my rheumy thought it prudent to at least draw a celiac panel. It came back positive for the TTG and then later the EMA was positive as well. I had the endo/biopsy that was negative for the usual celiac findings. The gastroenterologist that did the biopsy had his assistant call me (jeez, after I had to call them twice) to tell me what I've already read before:

"Your blood work seems to indicate possible celiac and you could be at risk; however, your biopsy was negative but sometimes the damage is not in the areas we biopsy. We will need to follow up with you. Would you like a telehealth appointment?"

I scheduled you an appointment, but then it occurred to me. What if come my appointment day, the doc says, "we can do xyz test, but you need to remain on gluten" and I would've went off gluten as a "I'm done with gluten" maneuver? Then it's back to square one with waiting for testing or...do y'all think I should reach out to my rheumy that originally wrote all these tests for me to get his opinion? The last I talked to him he said, "You know, the problem with biopsies is getting the right amount and sometimes you don't get enough or the sample isn't good". Sighs. I need some advice. I'm not sheepish about talking to docs but here in Michigan, everything is overrun because of this stupid covid variant we have going and docs are swamped in general with protocols, etc.

[knitty kitty]

Accept the two positive test results.  The small intestine is as large as a tennis court if laid out flat.  Much of the damage can be microscopic and patchy.  You've got extra-intestinal symptoms (symptoms outside of the GI tract), your nerve and muscle pain, which can be indicative of an autoimmune response.

Insufficiencies in some B vitamins (Thiamine, Niacin, Pyridoxine, Cobalamine) can contribute to nerve pain and paresthesia. Magnesium and Omega threes can help with joint pain.  Please discuss supplementing with your doctor.  Treating nutritional deficiencies is part of proper follow up care for Celiac patients.

A DNA test to see which genes for Celiac does not require you to be consuming gluten.  

Hope this helps!

[Scott Adams]

Most people are now being diagnosed with blood tests alone, so if you'd like to share your test results along with the cut off markers for celiac disease it will offer more info, but yes, positive blood tests are normally very difficult to explain away, and likely require a gluten-free diet, no matter what the biopsy results are.

[AmericanaMama]

Hi, Scott...thank you for taking the time to reply.

Here are my numbers:

(first test) Tissue Transglutaminase, IgA    72.5 units/mL  (their standard range is <20.0 units/mL)    Immunoglobulin A (IgA) 212 mg/dL (their standard 70-365mg/dL)

(second test, a couple weeks later) TTG was 68.8     

Endomysial Antibody, IgA   1:40 titer     (their standard range of <1:5 titer)

[Scott Adams]

Those are definitely high numbers. I assume your next step would be to start on a gluten-free diet, but be sure to discuss your results with your doctor first. Let us know how things go. Your first degree relatives should also be screened, as ~44% of them could also have it.

This article will be helpful: