<<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