Diagnosed Celiac, Positive TTG but Normal Biopsy

[Booiegirl]

I was diagnosed with Celiac Disease 6 years ago with positive ttg and biopsy.  Since then, I have never had fully normalized ttg levels (did decrease to 27 at one point, now consistently 70++).  Doctor just did subsequent scope to rule out refractory celiac - which he has.  Here are biopsy results - 

Comment
The duodenal mucosa has near normal villous architecture - there are only a
couple of villi which might have slight blunting. The vast majority of
villi are tall and slender. There is a mild increase in intraepithelial
lymphocytes. The intraepithelial lymphocytes have the normal CD3+/CD8+/CD4-
immunophenotype. There is no aberrant immunophenotype in the pattern of
Refractory celiac disease type II and there is no lymphoma (specimen B sent
for flow cytometry is reported separately). This patient's initial biopsy
from 2011 was reported as having complete villous atrophy by my colleague
Dr. Sapp. The present biopsies have a near complete restoration of the
villous architecture, indicating a significant response to gluten-free diet
has occurred. However, the persistent mild increase in intraepithelial
lymphocytes indicates there might be some ongoing gluten exposure. Usually
"Refractory Celiac disease type I" cases have widespread villous
architectural abnormalities, so it is debatable if this should be
classified as such - if so, it is at a very mild end of the spectrum of
refractory celiac disease.

So good news - no refractory!  But what is causing increased ttg levels??  Anybody have any ideas (they did test thyroid and diabetes - both normal)

 

Thanks!

[tessa25]

I'm two years into this. By testing levels monthly I quickly found out that my numbers only decrease on a strict, limited, liquid diet. I've just started eating eggs last week without getting nauseous, and I'll see if my numbers continue to decrease. Not everyone has their numbers go down just by going gluten free (most do). Some, like me, have more restrictions. Once my numbers hit normal levels I will gradually add on soft food, then normal gluten free food.

[Victoria1234]

48 minutes ago, tessa25 said:

I'm two years into this. By testing levels monthly I quickly found out that my numbers only decrease on a strict, limited, liquid diet. I've just started eating eggs last week without getting nauseous, and I'll see if my numbers continue to decrease. Not everyone has their numbers go down just by going gluten free (most do). Some, like me, have more restrictions. Once my numbers hit normal levels I will gradually add on soft food, then normal gluten free food.

Does your health insurance cover the monthly testing?

[tessa25]

37 minutes ago, Victoria1234 said:

Does your health insurance cover the monthly testing?

No. But I'd be much worse off if I didn't do it.

[Victoria1234]

19 minutes ago, tessa25 said:

No. But I'd be much worse off if I didn't do it.

I was just wondering. Sorry to be so intrusive! I always wonder about how well insurance covers these things. I'm so happy it's working out for you to do so. Ok, I'll be honest... I'm super nosey, lol.