<<Disclaimer: Verify this information before applying it to your situation.>> Thanks to all who responded and if anyone else would like to e-mail me anymore stories please do - the convention is still a month away!!!! (P.S. Pam, please send me your email address within a message). Heather Campbell In response to my question to those who grew up celiac: What did your parents do right and what did they do that you wish they hadn't. ------------------ I was diagnosed at 14 yrs and my younger brother when he was 9 or 10 yrs old. My mother also has CD. She always attempted to make things for us that were as close as possible to the 'look' of glutenous foods. Yes, it is possible. Not for everything, but enough that we felt like we had most of the same things. GF Bread 'technology' has gotten better since then. Now with the list we can find more GF products, i.e. pretzels, bagels, etc. We had a hard time with not being able to go out for pizza but fortunately in Buffalo, NY, Chicken Wings are very popular so we could go out with friends and eat the wings. (Chicken Wings are greasy but GF). We both missed sub sandwiches, even today. We haven't found a good substitute. At Birthday parties and social events, we would just call in advance and check the menu. Most were happy to make something available or let my mom make something for us to bring that was GF. I can remember bringing things like a Taco Dip (cream cheese, sour cream, onions, green & red peppers, salsa, cheese served with corn chips to scoop up the layers) or other things. My mother would find regular recipes that were already GF so everyone could have some (it was cheaper too.) I don't ever recall having a hard time understanding that eating GF was a problem for us to accept. My mother made it reasonably easy, so I rarely felt like it took all that much extra effort. My brother took longer to learn to not eat small amounts of gluten in things. He wouldn't eat bread/rolls or cookies, but would eat a candy bar with maltodextrin or wheat anyway. He just didn't understand what that was doing in the long run, until he agreed to try totally GF for a month. He felt so much better that he was convinced. PS. By the way, I am now 29, my brother is 23. Both of us are happy, healthy and GF! ------------------ Dear Heather--This sounds like a good idea for Celiac kids and parents. I am 18 now and was diagnosed at age four. I'd say that I really don't think that there was anything that my parents did that "embarassed" me. My mom was a homemaker until my early teens, so she was always around to bake for me. I never went without when there were birthday treats at school or such. She always had some sort of a substitute. I think one of the most important things that she did for me was to compile a "diet sheet" which listed okay/taboo ingredients, as well as favorite snacks and recipes. Then she would provide this list for the parents of my friends. This way they could have something like fruit roll-ups or popcorn on-hand, and would have a reference source for more complicated food-related questions. There are things similar to this available on the Internet these days. Otherwise, I learned very young that there were people who would simply not (through an obtuse attitude or simple lack of comprehension) comply w/ the condition. It was very hurtful to hear from friends and even relatives that it was "all in my head." I had to accept, though, that the diet was what kept me healthy. I never questioned whether or not I should eat something or "cheated." I learned how to read ingredients and adhered to my diet 100%. I simply accepted that as necessary, and was encouraged by my parents. There were certainly times when I was angry about this burden. It was very frustrating feeling different, but my parents tried to keep it in perspective. I wasn't born handicapped and I didn't have to give myself insulin shots every day like some kids did. Plus, food was food and I was able to eat almost everything that everyone else does, just in a different form. My mom also, by the way, talk me how to bake when I was small, and has continued to help me in this respect. She created lots of fabulous recipes, and has always "fretted" over me to see that I eat correctly. I won't say that it's "all better" now that I'm a young adult. I will be going off to college next fall and will face an all new challenge--dorm living. That could cause many hassles in and of itself. These days when my friends want to go out for pizza or go to Taco Bell I make due as best I can, and tell myself that CS keeps me skinny (well, sort of!). My only hope is that I do not, by means of genetics, pass this on to my kids. That, however, remains to be seen. ------------------ I was diagnosed with DH at the start of my teens. My worst situations were at times that a group of us would share take aways, eg pizza, giant rolls breaded fish and chips etc. and I felt really alienated and ashamed to admit I had a problem. I either withdrew completely or ate the offending stuff and risked the consequences. I think if I had of learned to talk about the problem with other kids and challenged all the " oh you poor bugger" comments with an appropriately positive response and learned to cook all the GF alternatives and invite my friends to join in with me, life would have been easier. I now find that my DH is a curiosity and often a great topic to break the ice at parties and when I bring along GF pizzas and bread rolls and cakes, its always a very positive response. If kids can learn the positive side of being different and impress others with their knowledge of their disease and their cooking skills their child hood and teen years may be more rewarding. ------------------ I am a 25 year old celiac "kid" from Germany, currently living in Atlanta. First of all I have to admit that I was very ignorant about celiac disease in my teenage years and also my parents became less careful because I did not have any symptons. I don't want to make them look bad, it just got out of their control . I am stubborn...and as long as my parents could not see what I was eating, they could not fight against it. I was diagnosed at the age of about 1 1/2. As a little kid I did not have any problems in accepting my diet (I just talked to my Mom on the phone about it). For me it was very natural to say "No, I cannot have this." Most of my friends' parents were friends of my parents and so they knew very well about my diet. When I was invited for a birthday, I've had my own cake and cookies with me and as far as I remember, the other kids were even a little bit jealous because I was eating something special. And still : all of my friends always want to try my stuff and my boyfriend loves my bread-machine rice bread. But then came a time in which I started to become smart about it (in 3rd/4th grade). I realized that I was able to eat certain brands and so I started to try how far I can go. I remember one day when I was over at a friend's house and I was asked if I want to stay for lunch. The mother knew about my diet. So she said that she was planning on cooking spaghetti and that she has to think about something different now. But I was asking her, which brand she wanted to cook and when she told me the name, I said "Hey, that's the one I can eat." I don't remember, what followed. But I guess she did not cook it - she was smarter than me. I don't know when it started, but I guess at the age of maybe 14. I was spending time with friends and we did not have other adults around us. So I started eating small amounts of gluten. Every now and then a piece of cake or bread, pretzels and stuff like that. AND NOTHING HAPPENED! So I went on until I did not care about it at all anymore. Except for home, where I was still eating gluten free. I was lucky. I survived these years without any symptons!!! And then (maybe 2 1/2 years ago), I don't know why, I suddenly started to think about it more. First I tried to avoid at least the real obvious food like cake, bread, pasta,... I did not pay attention e.g. to sweets with waffles in them. In summer 1995 I put a note in the internet, that I am looking for a celiac host family in the States (I wanted to come as an Au Pair). Finally, when I was about to give up, I got in touch with Patti here in Atlanta. She has celiac disease and was looking for an Au Pair for her 1/2 and 5 1/2 year old kids. We started talking about the disease, the differences between the US and Germany and I became more and more cautious. Finally, in January 1996 I came to Atlanta as an Au Pair for a great family. This was the best time of my life and I've learned a lot about CD. I am almost 100% GF now, but every now and then I still cannot control myself and have to eat bread in a restaurant e.g. I think, that it is like a drug. It's very hard to live without gluten again after alll those years of sinful living. This is my story. I guess my message especially to parents of celiac kids is, that they have to watch their kids especially in teenage years. In those years, when kids also start smoking, drinking, drugs etc. It is the age of testing yourself and your parents and it's VERY easy to get the "drug" gluten.