<<Disclaimer: Verify this information before applying it to your situation.>> this isn't like diabetes. if you have gluten, chances are that, although you'll feel uncomfortable you probably won't die. as well, if you were a big bread and pastry fan prior to diagnosis, you would feel a much larger degree of grief when told it's no longer an option. i myself can take or leave breads, but found out i had celiac by first being diagnosed as lactose intolerant. *That* hurt. i went through the grief process then, and when i was later able to tolerate small quantities of milk products i figured i could handle the gluten issue with no problems. in the same vein, my mother, who is also celiac, can get away with eating some gluten, whereas i cannot. i don't begrudge her though, in fact i feel i'm luckier, as i don't have the temptation to experiment. with this disease, we are our only experts. we alone can determine what's best for us. if some people are more strict and rigid in their approach to gluten, all the power to them, providing they benefit. and really, who doesn't benefit from knowledge??? i have never had a reaction to shampoo products with wheat germ or gluten in them. i can pooh-pooh those who refuse to use the products all i want, but in the end it boils down to, if they had a reaction and know this is the culprit, then they shouldn't use it. that simple. to be honest, my hat goes off to those who are so dedicated. i have learned so much, had such an ease of transition into the gluten free life, primarily because of those who've gone before and who've created this mailing list, those web pages, called those companies, that i'm extremely grateful. i'm not saying i haven't been caught, but that was always due to my own lack of vigilance, never any misinformation i've found on this list or any web page i've seen. my mother has been diagnosed 10 years with celiac, and i have learned more about the disease, the diet, the food products to avoid in the first six months of diagnosis than she did in ten years, specifically because of this, and she's a nurse. which brings me to a question i would like to see some comments on. the medical community, in my mind, is NOT really the place to go to discuss the daily effects of this disease. they can diagnose you, and give you a list of foods not to eat, but that's really where their role ends, good or bad. my mother was diagnosed by a doctor who was actually quite savvy in celiac, but yet as mentioned earlier, i learned more with a computer in six months than she did in ten years *and* being a member of the medical community. i don't think this is an unfair observation. naturally people who have the disease will have a much more vested interst in it than the people who diagnose the illness. and while i'm sure this is changing, as we as celiacs become more vocal expressing our opinions etc, there still is in my mind a schism, and a rather large one between being TOLD what you have and being TOLD HOW TO LIVE with what you have. many communities have celiac support groups, but many still do not. and i think many doctors would hesitate referring celiac patients to support groups run by lay people with the disease if there isn't a medical professional on the board as well. how do we bring all our knowledge gleaned back to the medical community, to help those who are being diagnosed now, and in the future? what do you think? i welcome any comments, criticisms, etc. elizabeth powell