University of Chicago Celiac Disease Center

Well...I decided to e-mail Dr. Stefano Guandalini at the University of Chicago Celiac Disease Center today...and he responded already! I basically wanted more information and to see what my next step should be...I sent him a VERY lengthy e-mail describing my symptoms and "adventures" with various doctors/diagnoses.
Here is the response I got from him:

Dear Rachel,

I read carefully your story and I feel there is indeed a high chance you have celiac disease. Unfortunately, as you clearly understand now, the whole diagnostic process (that should have promptly begun years ago) was not handled properly and is now jeopardized by your diet.

In essence, I now suggest the following:
1) Have a genetic test done, looking at the presence of HLA-DQ2 or DQ8.Any doctor can request this simple blood test to Prometheus Laboratories; or you can have a swab test from the inside of your cheeks that has the same value and is offered by Kimball Genetics (if you choose this, write to our program director Ronit Rose at rrose@peds.bsd.uchicago.edu and she can have one sent to your home). If the genetic test is negative, you can stop here: there is no risk of being celiac. If it is positive, then proceed with:
2) Reintroducing some gluten in your diet (about half a cracker per day would be more than adequate to trigger the immune response while hopefully causing minimal or no symptoms) for at least 3-4 months, then have an EGD with biopsy done.
In any case, if you want first to be seen, I -although being a pediatrician - can also see adults and occasionally do this for suspect celiac individuals. So you may contact my receptionist and ask her to see me either here in Hyde Park or in my outreach clinics in Matteson, IL in a date that is convenient for you (I do warn you,though: I may be booked up for quite some time..! :))

Stefano Guandalini, M.D.
Professor and Chief,
Division of Pediatric Gastroenterology, Hepatology and Nutrition
Founder and Medical Director,
The University of Chicago Celiac Disease Center
University of Chicago Comer Children's Hospital

Very informative! I am going to e-mail the program director and ask for the swab test right away....I wonder how much this costs? We'll see! :)

I am going to consider trying to get an appointment with him, too. I can't believe the thoughtfulness of this guy for e-mailing me back...and so promptly, too! Wow!!