My girlfriend has Celiac (as well as being casein-intolerant, a Type 1 diabetic and having kidney disease), and I find myself being afforded the position of explaining why she's not eating X food, occasionally. Conversation might go: "So, why doesn't she eat x ?" "She has Celiac ." "What is Celiac?" "She can't eat gluten. Twenty parts per million is what has been kinda defined as 'gluten-free', even though really that's twenty parts too much. At that level, it's like if someone makes her a salad and they accidentally put croutons on, they have to make a new salad because the residual crumbs are way too much. She can't walk into bakeries because of the residual flour in the air." "Wow. What does gluten do to her?" "It's like ninja stars to her intestines." "Ow." "Yeah." This *appears* to provide the listener with both an understanding of the severity of the condition as well as some insight as to the lifestyle impact. Hopefully as more documented success stories are accumulated, we can create a repository of methods that can be read and applied in different situations.
jinkywilliams replied to gfreegirlie's topic in Celiac Disease - Parents of Kids or Babies With Celiac DiseaseMy girlfriend has Celiac, and because of the advanced stage of it when she was diagnosed she is also very sensitive to casein, a protein found in lactose. She is a Type 1 diabetic, and has a kidney disease that--while dormant--means that she needs to take really good care of herself or she could quickly be looking at needing a replacement. When I was learning about Celiac, I found a lot of clinical information. But I realized how completely inadequate I was when I was walking through Fred Meyer, one day. I decided to try to shop how I would if I were her. After an hour of walking around, I fell into a pretty acute depressive state for about 10 minutes as the reality of "this is *really* not easy* kinda sunk in, and seeing how much was unavailable. It was later on that night that I came across glutenfreemom.com. http://www.glutenfreemom.com is an excellent resource for people with Celiac who haven't had a lot of support, or for people who want to see a slice of life of a family who is gluten-free. The tagline is "Because LIVING gluten free will not stop you from living the life you choose." It is written and upkept by a real mom in a real family whose daughter was diagnosed with Celiac. She says, "I am not a doctor, nutritionist or a psychologist - I am just a Mom who is feeding her family gluten free and, as such, this web site is based on what we have found while journeying down this gluten free road." It was such an amazing find, for me. It got me excited. They were living their lives. They have gone to Paris. Germany. Hawaii. RV'd across the US. She has recommendations for how to eat out, to allow her daughter to sleep over at friends' houses safely, and to make her not feel alienated or "different" at school. Practical, relational, real-life applicational stuff. And I get to learn how to cook! As scarlett77 said, there is *so much* available that is gluten-free if you cook stuff instead of getting prepared foods (http://www.celiactravel.com/articles/what-does-a-gluten-free-diet-consist-of/) I'd highly recommend checking it out. In reading different Celiac forums, there's a lot of support that is needed. This blog, I believe, may serve to give people some hope. I know I'm speaking from the viewpoint of someone who doesn't have Celiac (or lactose intolerance or Type 1 diabetes or kidney disease), but there is so much life that you can live. Sites like glutenfreemom and http://celiacbymarriage.blogspot.com show that there is a hope and a future, not for merely surviving but for thriving in your environment. I also recommend a book called "Eat to Live" (http://www.(Company Name Removed - They Spammed This Forum and are Banned)/Eat-Live-Revolutionary-Formula-Sustained/dp/0316829455). It is one of those books that is transforming my life through challenging my current understanding of things, presenting me with good evidence, and communicating it in a way that is simple.