Abnormal Biopsy Results After 2 Years Gfd?

[JustAGirl79]

I've posted a few times in the past couple of months as I continue to deal with celiac symptoms after two years gluten-free. I had an endoscopy done a couple of weeks ago, and received the call that the biopsy results were not normal and the doctor wants to follow-up with me in person. I was told it's not "urgent," but a follow-up is required.

My GI doctor has already done a small bowel follow-through and a colonoscopy to check for co-existing conditions, but there aren't any. No signs of colitis. No IBD. Since then my doctor has been saying I'm just dealing with IBS, but I wasn't convinced, so she did a follow-up biopsy.

I have blood work done every six months and it's been fine, no evidence of gluten in my blood.

Is it possible I'm just not fully healed yet? Or, does it sound like she's going to tell me this is refractory...

[ravenwoodglass]

Could you be getting CC'd frequently? That might cause you not to heal fully but might not be enough to cause a positive blood test. It is also possible you have another intolerance that is keeping you from healing fully. Have you tried eliminating soy and or dairy to see if that helps? Also are you checking everything for gluten? Your supplements, any OTC or script meds, generics need to be checked at each refill, toiletries should be checked also if you are still having gluten issues. Some of us need to be very strict to stay symptom free and use great care with restaurants, eating in a home where others eat gluten and even kissing a gluten eater without them brushing their teeth.

[Mack the Knife]

Only about 50% of adults have complete intestinal healing after 2 years on a gluten free diet. But you should be showing definite improvement by now.

[Skylark]

Only about 50% of adults have complete intestinal healing after 2 years on a gluten free diet. But you should be showing definite improvement by now.

That's exactly what I was going to say. Some celiacs take as long as 5 years to fully recover; others get a lot better but don't return to 100%. I would personally give it more time before accepting a diagnosis of refractory.