<<Disclaimer: Verify this information before applying it to your situation.>>

Ms. Rampton and all,
 
The survey was taken from the NFCA's website (National Foundation for Celiac Awareness), as was stated in my email. I did not create it. However, since I have received a huge number of recommendations and comments I have asked them to modify...
 
Thanks for your input!
Genevieve (Vivi) HneichThe George Washington UniversityMPH Candidate, Health [log in to unmask]
 

> Date: Tue, 30 Jan 2007 13:12:22 -0500> From: [log in to unmask]> Subject: Regarding surveys about celiac disease> To: [log in to unmask]> > ---------------------- Information from the mail header -----------------------> Sender: Celiac/Coeliac Wheat/Gluten-Free List <[log in to unmask]>> Poster: Suzanne Rampton <[log in to unmask]>> Subject: Regarding surveys about celiac disease> -------------------------------------------------------------------------------> > <<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
_________________________________________________________________
Turn searches into helpful donations. Make your search count.
http://click4thecause.live.com/search/charity/default.aspx?source=wlmemtagline_donation
* Please carefully compose your subject lines in all posts *
Archives are at: Http://Listserv.icors.org/SCRIPTS/WA-ICORS.EXE?LIST=CELIAC