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Wait Or Take A Different Route?


lob6796

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lob6796 Contributor

I got the letter today with my appointment for the GI specialist. My CONSULT with him is scheduled for Aug 23!!! So I would have to wait for the consult, then he is going to order more blood work, wait for those results, have another consult, then schedule the biopsy, then go to the followup appt, and THEN I can go gluten free. I could be looking at not being able to start a gluten free diet until November. I am going to call my primary on Tuesday to discuss things with him. Is it worth it to get the biopsy? I just want to start feeling better. It's frustrating me that I know what I can do to start healing (gluten free) but I'm not allowed to do it. Any advice?


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missy'smom Collaborator

I can't tell you what to do but can just share my experience and that of my sister. I didn't go through testing because of a move and knowing it would take me forever to find a Dr. and get testing done in a new city, not knowing anyone. I needed to feel better fast to cope with all the changes and survive everyday. Before I moved I had a Dr. tell me he thought I had celiac disease and after I moved and seeing the Celiac Sprue Association checklist of symptoms and trying gluten-free and seeing miraculous improvement that was enough for me. I have had experience with another very restrictive diet(gestational diabetes) and have good coping skills.

I have strongly encouraged my sister who clearly has celiac disease, to persue testing(and she is) because she is the kind of person who needs proof to be able to commit to a lifelong restrictive diet(and she would agree). Plus she has some possibly related serious health issues that she may need additional testing and Dr.'s help with. Additionally, she is lucky enough to have a celiac disease clinic nearby. With her set of circumstances, testing is the way to go.

There are others here who have been through testing and may offer their perspective.

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