Have any of you had repeat biopsies since going gluten free? What were your results like?

[RoseMG]

Hi All,

I was diagnosed with Celiac disease in 2018. I have been strictly gluten free since (only eating naturally or certified gluten-free products and basically never eating at restaurants), since I am largely asymptomatic and have no other way of knowing.

I had a repeat biopsy in 2020. This showed no increased intraepithelial lymphocytes but very very mild villi blunting. For reference, the scope that diagnosed me was LOTS of villi blunting (march 3B).

I just had another scope in 2023. This one showed no blunting but this time around - some mild increased intraepithelial lymphocytes.

The doctor who performed this latest scope doesn't seem to know a great deal about Celiac's. I am concerned that my biopsy is not 100% clear yet and confused by these results. Have any of you had repeat biopsies since going gluten free? What were your results like? Why would I not have intraepithelial lymphocytes in 2020 but now I have them? These are the questions!

[RoseMG]

Just following up :)

[Scott Adams]

I've not had a repeat biopsy, but your results could caused by several things:

1) Perhaps your diet is not 100% gluten-free. Do you eat in restaurants or outside your home?

2) Since you had such severe villi damage, Marsh 3b being close to the worst level, healing could take more time, and 2 years might not be enough time.

3) You may have a thiamine deficiency:

 

[RoseMG]

Thank you. No, I never eat out, sadly. I'm so meticulous about my diet. I'll look into the thiamine!

I reached out to my old doctor (who works at a Celiac-specific center) and he assured me lots of re-biopsies show healed villi but IELs still (up to 50%), which is a bit sad. 

Just frustrating since I can't possibly get stricter with my diet! I won't even take medicine since I have no clue what's in it.