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From:
George & Gayle Kennedy <[log in to unmask]>
Date:
Sun, 31 Jan 1999 09:28:07 -0500
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<<Disclaimer: Verify this information before applying it to your situation.>>

>> I too have been trying to mobilize the list to
>>action by encouraging them to write letters to targeted media outlets. My
>>recent posts are referred to as Solution Awareness.(formerly National
>>Exposure Initiative)  Out of the hundreds of Us members, only about 30
>>people have contacted me to say they are participating.
>>
>>You mentioned the physicians list. I wonder how active it is? I have been
>>part of Cel Grps for a few years and have only received one post. I have
>>posted to it but have never received a response. Shows what a pitiful lack
>>of cooperation there is between Major groups.
>>
>>Don't let me discourage you . Id love to help in any of your endeavors.
>>
>>Dan Davis

****
>>Two thoughts have crossed my mind.
>>
>>What if we asked the American College of Gastroenterology to "volunteer"
>>a doctor periodically to respond to questions about how they would
>>handle a given situation.  Rather than have the doctor respond to
>>hundreds of questions, why not submit several questions the the doc of
>>the month (or whatever) and his responses would be posted to the list.
>>This also might attract other gastroenterologists to lurk and learn.  My
>>own suspicions are that docs know something about celiac from text
>>books, but don't seen very many celiac patients.  Therefore, when they
>>are reviewing the literature, the focus on the latest and greatest stuff
>>about the diseases they frequently treat.  Things have changed since
>>they were in med school -- but they don't see enough celiac patients to
>>really get a grip on the topic.
>>
>>Second thought, my suspician (my opinion only) is that allergic gluten
>>intolerance or frank (confirmed) celiac probably overlap.  Personally
>>I'm not officially diagnosed but 6 years as gluten free as I can get
>>with occasional gluten accidents from unknown sources (and agree with
>>Nancy's post of today -- how do you get tested when gluten makes you so
>>very sick that you can't function! )  and our community (the list) seems
>>to be tolerant of those of us not diagnosed, but quick to state that we
>>are making a mistake by not being tested!  We need to appeal to everyone
>>who is earnestly gf for medical reasons because it will help put all the
>>pieces of this big puzzle together for the researchers.  Then and only
>>then can the exclude allergics or include allergics or whatever -- it is
>>all immune response stuff and genetic stuff tied up together.  There may
>>be (as in the case of diabetes) a type I and type II celiac or gluten
>>enteropathy.  There may be more subtypes -- or there may be just one
>>disease.  We won't know until all the research is done.  Therefore, we
>>support each other in providing statistica/numerical information for the
>>researchers through the list.
>>
>>Thanks for listening.
>>
>>Sally
>>[log in to unmask]

****
>Wonderful, my sister has celiac and I am just a vehicle for her.  Please
>pursue this endeavor for the good of all.  Thanks to you and the many others
>that contribute so much to this campaign.  Everyday I look forward to reading
>the emails.  This has helped to educate me in many ways.  I support this
>effort.
>
>I wish everyone would list the country that they reside in.  This helps us to
>follow up on certain foods, etc.  Thanks again.
>
>Ronnie in Augusta, GA, USA

>
>I think there is more to be said about Unity for Celiacs via this LIST.  I
>don't have the answers, but I'm willing to give it a couple of hours
>every day for the next couple of weeks, if enough people are interested.
>The idea of having some medical expertise seems to be the one that is
>generating the most response.  Any suggestions out there?
>
>Gayle Kennedy

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