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arkant

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About arkant

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  1. I agree--try. My 13 year old was diagnosed jan-april this year, was tired and insatiably hungry all the time, rheumatic symptoms, Raynauds, , high RF, no classic celiac GI symptoms. Positive bloodwork and endoscopy/biopsy. After 1-2 weeks on gluten-free diet, regained strength and energy, sore joints improved, still tired more than I like. My 10 year old presented in a completely different way. A funny, engaging, loving super bright kid, of course, but always a very picky eater, living on pasta, very moody, which we blamed on her limited diet. Often complained of upset stomach, but apparently healthy and growing fine and our pediatrician couldn't find anything. When her sister was diagnosed, we had her bloodwork tested, and all came back positive. We didn't bother with the endoscopy, put her on gluten-free diet immediately, and within a week it seemed, the moodiness dropped away like magic. She still complains of stomach aches and she thinks maybe she has additional issues (has respiratory allegies, occasionally asthmatic) Anyway, it was shocking to all of us how transformed her moodiness was by the gluten-free diet. Another thing. We made our house virtually gluten free, and I agree its really nice for them to come home and know they can eat anything they want. I always make sure to have plenty of gluten-free treats around. Its been an important coping mechanism for our family.
  2. thanks guys-- unfortunately they had packed away all their stuff when I dropped her off. I asked them to let her check the labels. Since its a backpacking trip, they've already stuck most of the stuff in ziplocs. It was very annoying because they are so in the business of reassuring parents, but know nothing about celiac disease. I felt they were working harder to pacify me than to listen to what I actually had to say. So they made a big effort to get wheat free food, but didn't check gluten. They thought it was a wheat allergy. So they bought unsafe oatmeal, nutrition bars, etc... Meanwhile, I'm afraid the other kids are going to feel resentful, and my daughter singled out, because everyone's food is going to be unnecessarily limited. We arrived with two big bags of groceries, which they took, but now I'm feeling like I better Fed ex a bunch more. We really need to get the word out about celiac more so that our children can grow up in a world that has a clue about what we are talking about.
  3. My daughter choose to go on an Outward Bound backpacking trip this summer. From the beginning I asked them if they could accommodate a gluten free child, and they insisted it was no problem. They decided to make the whole group gluten free, (except for cookies and such which can be easily segregated) which we both really appreciated. They sent me their regular menus, and I sent back an extensive list of substitutions of brands we like and trust. They never got the list somehow, and went to local health food stores and supposedly read labels, but I'm very nervous about the whole thing. I can just picture her out in the backwoods somewhere, feeloing miserable, with people who don't understand what's going on. We're going shopping today for gluten free trail mix, etc.. We bring her up to the base camp tomorrow. Any suggestions? I don't want to be too obnoxious and seemingly neurotic by snooping through their provisions, since their intentions seem to be great, but .... Thanks