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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/

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