<<Disclaimer: Verify this information before applying it to your situation.>> I am writing in response to Ms. Hneich, asking for input from people who "are already diagnosed with celiac disease." However, my message is meant for the broader audience of researchers -- especially those who look to members of this list to participate in surveys. I always wonder about these surveys that require that one be diagnosed with CD, either through blood test or biopsy -- because I think such surveys exclude a large population that basically cannot be diagnosed. This is true for me. I stopped eating gluten 5 years ago, without understanding about CD, and now would be made too ill to be tested. Most of my doctors agree that I probably CD (and support my decision not to do a gluten challenge), as my symptom array is actually more substantial than many people who have been diagnosed. My life is lived in the same way as anybody else who suffers from CD, and I live with the same challenges. And, just as anyone else would, I want my voice to be heard. In any case, I never understand why surveys do not include this group of people, as I expect we are rather large in number. If you were to ask a question that included something like "I have been symptomatically diagnosed by a physician," along with "I think I might have celiac disease and I follow a strict GF diet." Thus, "our" answers could be included. In analysis, one could always tabulate those who come under those categories separately from others who have had medical diagnoses. It would give you a much more substantial database and also might reveal some surprising answers you might not have expected! Especially, if you are doing surveys via the internet -- it doesn't cost you any more to include these additional people, as it might if you were recruiting survey participants in any other way. Thanks for listening, and I hope some of you out there might give consideration to this issue. At 9:08 PM -0500 1/29/07, Genevieve Hneich wrote: >If so, please take this survey so NFCA and all of us can better >understand our celiac community. Your answers are confidential and >will not be shared. >http://www.celiaccentral.org/Do_I_Have_Celiac_/Already_Diagnosed_/259/ * Please carefully compose your subject lines in all posts * Archives are at: Http://Listserv.icors.org/SCRIPTS/WA-ICORS.EXE?LIST=CELIAC