Risks Of Delaying Second Endo To Determine Refractory Celiac?

[megsybeth]

According to my bloodwork, I seem to be taking quite a while to heal though I've been strictly gluten free and am aware and vigilent about cross contamination (eg I don't do fries in most restaurants, don't do most restaurants actually, don't do generic oats, etc.). I think I've had celiac since I had mono at six and was 35 when diagnosed. It's now two years later and two years of the diet. The malabsorption issues such as fatigue have dramatically improved and GI isn't bad, but never really was.

 

I've relocated and new GI wants to do a repeat endoscopy because my TTG IGA is still elevated. She wants to rule out refractory celiac and has told me and I've been reading about the risks of untreated refractory celiac. But even though I'm elevated, I'm trending decidedly down.

 

My first labs were through primary and I was positive across the panel but the range of TTG isn't accurate or useful since from Quest (and I don't remember it =)) 

-second, a few months into diagnosis, was TTGI IGA of about 95 (university lab);

-a year later about 45 (university lab)

-and now about 23 at a new hospital lab where positive is above 15 (nurse thought it was same range as my university lab tests)

 

My thinking is since my symptoms aren't troublesome and I just switched plans, I'd rather not use my deductible to pay for an endoscopy if it's not absolutely necessary. I would think she'll see blunting...but she hinted that she wouldn't jump to steroids, would just try to make my diet stricter. I'd rather just follow repeat labs and then, if not continuing down to negative, do an endo next Jan or later when I can pay my deductible for the year. 

 

Any advice? I think I will also just stop restaurants or eating anywhere I don't trust 100% but my gut tells me (pardon the pun) that it just takes a while when active celiac is ignored for so long.

[bartfull]

If you had celiac for 30 years it doesn't surprise me that your numbers are still positive. But the point is, they are on a steady decline which means you are still healing. Some folks take three years to heal. I would definitely NOT be concerned about refactory celiac. If it were me I wouldn't give it another thought. If you want to wait and do the endoscopy later I think that would be a wise choice.

[ravenwoodglass]

 

 

Any advice? I think I will also just stop restaurants or eating anywhere I don't trust 100% but my gut tells me (pardon the pun) that it just takes a while when active celiac is ignored for so long.

I think this is a good plan. If you are getting CC'd frequently that would explain why you are still positive on the tests. Different folks heal at different rates. 

You don't want to end up with a refactory diagnosis if what is really going on is due to cross contamination