Inconclusive biopsy

[Jojo78]

So back in 2017 I took gluten out of my diet for 4 months and during that time had some weird changes going on in my gut and bowels. Think it was just healing process. So went for an about 4 month market no gluten and the  endoscopy biopsy result's came back inconclusive. So my gastroenterologist send me for bunch of bloodwork all came back negative but I took gluten out of my diet and if I try to start eating it again I get sick. I’m assuming I have celiac then, has anyone experienced this because I’m so confused. He told me if my bloodwork came back negative then it must be something else??!? I’ve read several post saying the bloodwork comes back negative if you take it out so wondering if that was my issue.  I’m not ingesting gluten for 6 to 8 weeks just to get another biopsy done I can’t do it I’ll be sick as heck! Going back to see him because this is really super frustrating. Oh yeah I also tested positive for ankylosing spondylitis through genetic testing wondering if this could be related to all of this as well. 

[trents]

Yes, eliminating or even severely cutting back on gluten for as long as you did will likely sabotage testing, whether it be blood work for detecting celiac antibodies or the endoscopy with biopsy.

But, if your symptoms improve when eliminating gluten you either have celiac disease or NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms but there are no tests for NCGS. Celiac disease must first be ruled out. So, unless you go back on gluten for 6-8 weeks for the blood antibody test or two weeks for the endoscopy/biopsy you will not be able to discern with any certainty which one you have. The good news is that the antidote for both celiac and NCGS is the same. Namely, total elimination of gluten, and that can be more challenging than you think. It's not hard to eat "low gluten" but to really eliminate it is much harder.

Maybe this will help:

 

Edited December 15, 2022 by trents

[Jojo78]

6 minutes ago, trents said:

Yes, eliminating or even severely cutting back on gluten for as long as you did will likely sabotage testing, whether it be blood work for detecting celiac antibodies or the endoscopy with biopsy.

But, if your symptoms improve when eliminating gluten you either have celiac disease or NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms but there are no tests for NCGS. Celiac disease must first be ruled out. So, unless you go back on gluten for 6-8 weeks for the blood antibody test or two weeks for the endoscopy/biopsy you will not be able to discern with any certainty which one you have. The good news is that the antidote for both celiac and NCGS is the same. Namely, total elimination of gluten, and that can be more challenging than you think. It's not hard to eat "low gluten" but to really eliminate it is much harder.

Maybe this will help:

 

Thank you so much this article is very helpful! I honestly think I have it because I take it out feel way better eat it feel horrible! I’ve been eating mostly gluten free since 2017 but have cheated a few times thinking I might not have it bc of the past testing results and bam it’s like starting all over again. So this last time I got glutened it was so bad I felt like a freight train hit me, literally had flu like symptoms, gastro symptoms from hell. I thought I might have stomach flu but more I think about it I swear it was from the gluten bc it’s similar GI issues that I’ve had in the past. 

[trents]

1 minute ago, Jojo78 said:

Thank you so much this article is very helpful! I honestly think I have it because I take it out feel way better eat it feel horrible! I’ve been eating mostly gluten free since 2017 but have cheated a few times thinking I might not have it bc of the past testing results and bam it’s like starting all over again. So this last time I got glutened it was so bad I felt like a freight train hit me, literally had flu like symptoms, gastro symptoms from hell. I thought I might have stomach flu but more I think about it I swear it was from the gluten bc it’s similar GI issues that I’ve had in the past. 

And this is the problem with not having an official diagnosis. People rationalize ways of cheating on their diet.

Just about everyone with celiac disease will tell you that once you have become consistent in eating gluten free, you lose whatever tolerance you had for it and when you do get "glutened" it makes you very ill. I can attest to that.

[Jojo78]

Just now, trents said:

And this is the problem with not having an official diagnosis. People rationalize ways of cheating on their diet.

Just about everyone with celiac disease will tell you that once you have become consistent in eating gluten free, you lose whatever tolerance you had for it and when you do get "glutened" it makes you very ill. I can attest to that.

Oh yeah, it’s horrible I thought I was going to have to make a trip to the ER… I’ll spare you the details lol 😆 no fun at all. I honestly could careless what the results are, I’m never eating gluten ever again I’m convinced that my body can’t handle it. It’s like is 2+2=4. Well I eat gluten=sick so honestly I’m not going out of my way to even retest bc I’m tired of getting sick with this. I went months and months no gluten and ate it recently on and off and each time felt worse and worse.