Should I get the biopsy?

[Onegiantcrunchie]

Hi everyone. I’ve been off gluten for 3 years, I took myself off it after noticing that any amount of pasta (even as little as one spoonful) was basically making my heart race and then immediate exhaustion. I also noticed that I get blue under eyes when I’ve been exposed, and one day I off-handedly mentioned this to a doctor and they ran anti-ttg bloods without me knowing, which came back positive, even though I was on a (largely at least, Not accounting for trace contamination) gluten free diet for a while at the time. 8 months later I had another positive test although on a lower tier. As I had already been off gluten for years I was reluctant to reintroduce it for the sake of the biopsy when I already have so much damage from previous gluten that unfortunately seems to be permanent.

would the biopsy make much difference to anything at this point? I’m on a dedicated gluten free diet for years now, and I thought that 2 positive blood tests while already on a gluten free diet was evidence enough. Seems to me the only benefit of the biopsy would be a 100% official diagnosis even though my doctors have basically said it’s quite certain. Is there anything I’m missing that I should get the biopsy for?

Thank you, I look forward to your advice.

[GFinDC]

Hi,

There is no benefit to getting more testing that i can see.  Once you are gluten-free the risk from doing a gluten challenge is not worth it IMHO.  Better to just stay gluten-free I think.

[trents]

I agree with GFinDC. The benefit of the endoscopy/biopsy for some people at the stage you are in is more psychological in the sense of confirmation to help them stay on the band wagon. Sounds like you don't need that.

Edited November 8, 2020 by trents

[Awol cast iron stomach]

I did it for my children. If you have family members then for some they do it. 

I will share I was better off the first time around. A waitress reintroduced gluten into my diet . I no longer eat out. Following up with a Dr and officially reintroducing gluten aggravated other health issues for me.

I had better health the first time around. My other health issue has not returned to the state it was prior to the gluten challenge even though I have been 4 years gluten free post challenge. I developed other food intolerances after the challenge.

Oh and in the end my children's pediatrician didn't care and refused to test them unless they themselves become symptomatic. My parents and siblings did not see any value in being tested either. My cousin a celiac was however able to determine with me also having issues determined the side of the famiy where her celiac came from.

Good luck

[Onegiantcrunchie]

Hi everyone. Thank you so much for your replies. You’ve confirmed for me what I already thought, that I’m better off just staying gluten free and not chasing any further confirmation.

^awol, I also developed a serious nut allergy not long after accidental gluten exposure so I dread to think what might happen after a gluten challenge. Thank you for sharing your story too.