Guest guest Posted August 25, 2009 Report Share Posted August 25, 2009 Hi all- I posted about hosting a san francisco dinner party group a few months ago and then fell off the planet. (sorry!) My mom was sick w/ Non-Hodgkins lymphoma and getting a bone marrow transplant (she doesn't have celiac, but lymphoma is an auto-immune disease too) and then i also started not feeling well. I've been gluten free for a year and for 6 months felt great, better than i had in years, then started going downhill again. I dont feel as tired and worn down as i did before diagnosed, but I want to feel as good as I did a few months ago! I started seeing a new doctor (Dr. Aron) and he want to do another endoscopy (first one was 13 months ago, showed Level IIIB subtotal atrophy on the Marsh scale ?) to see if I'm healing or if i have refractory celiac. He says I should have and endoscopy every year. I didn't have much time with the doctor to ask all my questions so i thought i would pose them to you all before i started google-ing What is Level IIIB subtotal atrophy on the Marsh scale? I know refractory celiac means i'm not feeling better but why? what is refractory mean? what do they do to fix it? is it 'standard operating procedure' to have an endoscopy every year? ok thanks! /april p.s. I still hope to start a san francisco dinner pary group when i'm feeling better... Quote Link to comment Share on other sites More sharing options...
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