Conflicting test results. Positive blood test, serology negative

[Vishakha]

Hello everyone, I have a conflicting situation and could not find a similar post. Any advice or experience appreciated.

I had stomach issues (acid reflux and wind) back in nov 2018 to the point where it was giving me issues in sleeping. I got tested for celiac (ttg) and it came out positive (>128). I am in UK and the scale they used is max 6.

I underwent a series of tests since then. My HLA DQ is positive. However my biopsy was negative and it was assumed that it could be early onset. I had no major GI symptoms or any other celiac symptoms so it was still inconclusive and I was not advised to go gluten-free. The testing went on pause because of my pregnancy and covid in 2020-22. I did a repeat of TTG test and weirdly it came 11 in Oct 2020, >128 in Feb-2021 again and 6!!!!! in March 2022 which was the last ttg test.

I underwent a repeat biopsy in Feb 2023 which was again negative. However, this time I was advised to go gluten-free (while not being overly strict on cross contamination) given the fact that my TTG has been occasionally high. I am gluten-free since a month. I had no major GI symptoms as such anyway and I do not notice any other improvement in my body after going gluten-free. I get tired quite easily and have muscle pains and leg pains but I am not feeling a change in that even after going gluten-free. That is a separate issue and exercise and physiotherapy helps me with that.

Has anyone seen TTG levels fluctuating like this for them? My last test in 2022 was even normal and I am not sure what to make of that really.

I am still in consultation with gastro but would appreciate any kid of advice if anyone has?

[trents]

Welcome to the forum, Vishakha!

That is indeed an unusual trend. I cannot remember having seen the situation you describe where the tTG-IGA was that high and then returning to normal without the intervention of a gluten free diet. My only thought would be that somehow your pregnancy reset your immune system so that you are in celiac remission. But I would certainly keep an eye out for the possible development of celiac disease in earnest. We hear about cases of remission occasionally on the forum but they usually aren't permanent. And it would probably be a good idea to have celiac antibody blood testing done every couple of years.

Edited March 15, 2023 by trents

[Vishakha]

13 minutes ago, trents said:

Welcome to the forum, Vishakha!

That is indeed an unusual trend. I cannot remember having seen the situation you describe where the tTG-IGA was that high and then returning to normal without the intervention of a gluten free diet. My only thought would be that somehow your pregnancy reset your immune system so that you are in celiac remission. But I would certainly keep an eye out for the possible development of celiac disease in earnest. We hear about cases of remission occasionally on the forum but they usually aren't permanent. And it would probably be a good idea to have celiac antibody blood testing done every couple of years.

I delivered in June 2020 and had 3 tests after that. So not sure if its related but I'm so confused. Will see what the gastro suggests as there has been no change for me even after 4-5 weeks of gluten-free diet. 

[trents]

Just be aware that having been on the gluten-free diet now for over a month you cannot be tested and expect valid results. For valid testing you would need to be eating regular amounts of gluten and that is true for both the blood antibody tests and for the endoscopy/biopsy. If you want additional testing in the future you would need to go back to eating gluten.

[Vishakha]

4 minutes ago, trents said:

Just be aware that having been on the gluten-free diet now for over a month you cannot be tested and expect valid results. For valid testing you would need to be eating regular amounts of gluten and that is true for both the blood antibody tests and for the endoscopy/biopsy. If you want additional testing in the future you would need to go back to eating gluten.

Yes I'm aware, I'll wait for doctor's view on this. That being said, I've a long list prepared of foods to eat if I go back to gluten diet for the tests. 🤣🤣