While the Celiac Center at Columbia is an asset to those of us in NYC, (1) not everyone has insurance and/or can afford to go and (2) if you live outside of NYC, it's likely that your options are much more limited.
To be perfectly honest, I do not think having a specialist is all that necessary. Yes, great if you have access, but just not the end of the world if you don't. When I was diagnosed, I already had an excellent nurse practitioner (NP) who was up for the challenge of sorting out treatment for this new set of issues, i.e. dermatitis herpetiformis and celiac disease. (I received my initial diagnosis via skin biopsy done by a dermatologist.) My NP helped me arrange a consult with a great gastroenterologist who confirmed the celiac diagnosis via endoscopy and biopsy.
A bit of my diagnosis story, but that isn't the point of my post today. What I want to share is this:
As new issues/concerns arose for me, I did a lot of research and - when I knew the issue was relatively obscure and specific to my diagnoses - I'd write a brief explanation of why I'd made an appointment and what questions I needed her to answer, and fax or mail it to her office the week before my appointment. This way she had time to do a little research/consult others if need be - and the letter I sent could be added to my medical record. While I'm sure practitioner preference will vary, my medical providers have said they appreciate the heads' up - and I feel like I get the help I need at my appointments. Hooray for forethought!
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