Yes, I Have Celiac, No, I Do Not

So yesterday I got the pathology report back from my endoscope. It read, in part, “These findings, together with the gross examination, support the pathological diagnosis (of celiac disease).”

I was not expecting the level of sad that accompanied that report. 

I mean, I was first diagnosised with celiac disease by blood tests back in June 2010. I know how to live a celiac safe level of gluten free. But all the symptoms that used to happen only after eating out and something going wrong at the restaurant had become normal, everyday symptoms in my gluten free life - I’d become so hopeful that I don’t have celiac because of that shift.

Then to get that 23andMe report saying I don’t have the celiac genes…

Well, my hope and confusion increased.

For the past few months, I’ve been eating the equivilant of two slices of regular bread every single day, some days more.

I have had an increase in overall symptoms during this time too. But rarely any response as severe as used to happen with restaurant mistakes.

while it was clear my system doesn’t do well with regular gluten containing foods, I was also not having any discernible reactions to sourdough or cultured wheat products. I was genuinely hopeful that endoscope was gonna come back negative.

Sure, gluten free would still be my path forward, but to not have to live with the extraordinary diligence and avoidance celiac disease requires would be amazing - especially if/when my cancer returns and I find myself hospitalized for additional surgeries.

So there I was yesterday afternoon, having myself a good old fashioned cry about the endoscope results. 

Then, a few hours later, I got the blood tests results back. This included genetic testing for the celiac gene mutations which, it turns out, 23andMe was correct about - I do NOT have those mutations. 

According to the lab reports my genetic risk of having celiac disease is “Extremely Low” 000 as in “approximately <0.04%. This result essentially rules out celiac disease.”

huh?

Can this body do anything the simple way?!?

My follow-up appointment isn’t for two weeks.

I’m going to spend as much clear brain space to be researching what other potential reasons there could be for these conflicting results and, hopefully, the doctor my follow-up is with will be as curious to explore further as I am.