<<Disclaimer: Verify this information before applying it to your situation.>> Thank you to everyone who wrote me. I got MANY wonderful e-mails and I am sorry I don't have the time to write back to everyone personally. So many people were so very supportive. Altho, intellectually, we may know that celiac disease encompasses a wide spectrum of sensitivites and reactions, it really hits home to see the individual stories. The responses I got fell into a few different categories: First, there seems to be a significant number of people who are extremely sensitive to gluten and who also have multiple other food sensitivities. Second, there are "regular" celiacs who do not have these problems - or maybe to a lesser degree, but who were very supportive. Third were the celiacs who do not have these problems and who do not understand why just taking some probiotics, or glutamine or..... won't make things all better - or why we can't try different restaurants til we find some that work. I will summarize some of the general thoughts. I received so many heartbreaking e-mails from other folks with extreme sensitivity and other food issues. Everyone in this situation spoke to how isolated they feel, how angry they get at times - often at other celiacs who do not understand, and how they live life never feeling totally well. Some people wrote that they are lucky because they have the support of their family - some even have entire families with the same issues and remarked that at least they have each other, which makes it easier. Some of the more heartbreaking e-mails were from people in this situation who do not have the support of their families - spouses who do not understand and who expect them to eat out and/or travel frequently. Suggestions I got were to invite people to my place for dinner (which I was doing regularly before I moved), stick with only natural, non-processed foods (which I have been moving in that direction), and to join the local celiac group (I have actually gotten very involved with them). Other suggestions were to see a doctor (which I intend to do if I can ever get a job &/or health insurance) or see an alternative health provider. Some people, who obviously did not have these severe issues questioned why I couldn't find a couple of restaurants where I was OK most of the time, or just go for coffee (I have - on more than one occasion - reacted to water in restaurants, so I no longer dare try. Those with the extreme sensitivities did understand that eating in restaurants could not ever be chanced. My reactions also last from 2 - 4 weeks, so a philosophy of "if I only get sick once out of 3 or 4 times eating out" just will not work for me). Someone questioned why I could not eat at my sister's. I do not have a good answer to that - I assume it has to do with airborne gluten and contamination of my food from that - all I know is that it seems to be a crap shoot if I will or will not get sick when I eat there - and I rinse off any dishes and silverware that I use, too. One interesting response was from someone who mentioned that she gets sick every time she comes to Denver. I actually was getting better before I moved here - probably coincidental, but interesting. Many people mentioned that I should take probiotics - I have tried a few different ways of taking them and have reacted to them - I assume from yeast as I am sensitive to that. If anyone has a recommendation for a GF, yeast free, dairy free probiotic, I would be happy to try it. (and please do not suggest goat's milk as I react to that) People wanted to know what supplements I am taking. Here is my list: Multivitamin/mineral extra B vits extra Vit C Extra Vit E L-glutamine digestive enzymes fish oil Calcium thyroid medicine sudafed fosamax I have checked them all out to be GF, dairy free, yeast free and nut free (the main things I react to) Another interesting comment in response to my mentioning a recent reaction to tomato sauce was that Hunt's has contamination issues. I was not aware of this and it was Hunt's that I reacted to. I spent a good portion of this past week watching the NIH celiac consensus conference over the web. For those of you who missed it, I thought it was very good and I learned a lot and I thought the committee did a great job with the report. Anyhow, if you saw it, you probably caught the point that there exists NO food, whether naturally gluten-free or made to be gluten free, that is in reality, totally gluten-free. Unfortunately for those of us with the extreme sensitivities, living in the real world under these conditions probably means that we will continue to live a sub-optimal existence. Again thank you to everyone for your wonderful, heartfelt messages. It helps to know I am not alone, even if there is no "fix" to this problem. Diane Denver * Visit the Celiac Web Page at www.enabling.org/ia/celiac/index.html *