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  1. This is utterly embarassing, but has anyone else suffered from this as a symptom of a food allergy? I've been tested for celiac disease twice (blood test - both negative) because my 9yo daugter was diagnosed with it 4 years ago. I went to a colo-rectal surgeon because I thought he would be able to help me, but he told me I had this condition and that it was probably the most common thing that he diagnoses, yet I had never heard of it. Then I went to an allergist who did the skin prick test, but apparently I'm not allergic to anything - I cried. I was hoping he would have an answer for me and I could go home and avoid this or that and it would clear up. I'm so miserable - this has been going on for a long time and it's ruining my life. I'm doing an elimination diet, but funnily enough, I can eat potatoes, tomatoes and peppers, which kind of surprised me. I haven't seen anyone mention this before, maybe because of the nature of the condition (look it up - I'm not going to go into the gorey details). Is there anyone else out there who knows what I'm going through?
  2. Our daughter was diagnosed at age 6 right at the beginning of first grade; it's been almost two years that she's been gluten-free, but right from birth she had gastro "issues". A few months ago, we actually did take her to a child psychologist for behavioral reasons. She was crying a lot and being mean to her friends. After listening to all we had to say, the dr. said he was convinced that her being 'different' was the core to her tantrums and attitude. He pointed out that even though we try to make things as normal as possible for her (school lunches and parties, birthdays, etc.) she picks up on all that WE have to go through to prepare for something as simple as a sleepover and it just reinforces to her how different she is. He said that he's cofident that she will outgrow this when she gets to be 10 or so - more an age of reason. We all define 'normal' in our own way. We try to celebrate her uniqueness with her and help her see that ok - maybe she's the only one with celiac disease, but what about the kids who have to sit at the peanut allergy table in the cafeteria? They have it rough too! Sometimes she will have a meltdown; the last one was after a soccer game and I didn't bring anything even remotely close to what the others had for their 'treat' afterward. Fortunately for us, she remembers how badly she used to feel and how sick she was and we can remind her of that. I also agree that the well-timed one-liners are very effective, because during the soccer incident (remember she's 8 now) when she finally stopped crying long enough to tell me "I HATE HAVING CELIAC DISEASE" I said, "You know what? I do too - it really sucks!" She knows I hate that word and it distracted her just long enough for me to pull her in my lap and comfort her until she was over it. Keep doing research and asking questions. Medical websites are great for the facts, but I have gotten more from these forums than anywhere else. It's my own little support group! Good luck!
  3. My son's celiac panel came back negative (his sister was off the charts and has been gluten-free for almost 2 years now). He was 13 at the time and I didn't want to put him through a biopsy (he's 15 now). For the past 6 or 7 months (maybe even more) he's had this rash on his hand and it spread to some of his fingers and now over to the other hand. The dermatologist diagnosed pompholyx and gave a strong steroid cream which worked at first but now doesn't seem to be doing anything at all. I'm wondering if it's due to gluten? Has anyone else heard of this condition being associated with celiac disease?
  4. The only feedback I've received is what you see here. It is a relief to know that we aren't the only ones, but it doesn't help. I did have her tested for other allergies and the only thing was the dairy came back very negligably low as an allergen. I was almost hoping that it was something else like that. I'm looking into the Feingold diet - just dreading it though. At least Smarties and Tootsie Rolls are gluten free, but if I have to take those away as well.... But there's something to be said for cutting out additives, preservatives and colors. You are what you eat and all that... I will pray for you and your daughter.
  5. I'm going to post this in more than one forum because I need as many answers as I can get. My 6yo daughter was diagnosed w/celiac in mid-July and we've been doing the gluten-free thing since then. Her behavior has gotten worse since then and she still has stomach-aches, so the doctor ran an allergy panel and the only thing that came back elevated was milk. It was a low-level reading (0.63H - low level is between 0.35-0.70). Her regular pediatrician is out on medical leave so I was left with many questions. She's been drinking Lactaid and taking the Lactaid pills before she eats cheese and such. Are we supposed to stop all milk - even Lactaid milk? Does this encompass all dairy foods or just milk? I'm not sure what we should be avoiding and what's ok at this level. Please help!
  6. Years ago when my son was on the Feingold diet we did "the store" as well (except he couldn't keep ANY of his candy). We will probably do that this year with our newly diagnosed Celiac daughter. We take out what she can have, and give her plastic bins to separate the rest however she wants, then she can assign a price to each bin (the price has to be pre-approved, of course!). She sets up her "store" and we go shopping! This way she has a little bit of money to spend on something she wants. She's in 1st grade, so she's learning about money anyway. It will be a good lesson in more ways than one!
  7. My daughter is 6 and was diagnosed with celiac disease and has been gluten-free since mid-July. My husband and I have noticed that her behavior has gotten much worse since then. She has always been headstrong but now she flies off the handle over the littlest thing. We never know what's going to set her off or how long one of her "episodes" will last. I feel like she's in her terrible twos! She'll lay on the floor and pound her feet and throw a tremendous fit. Or she'll cry about something and when I ask her what she's crying about she won't answer me. I'm getting so frustrated - has this ever happened to anyone else?
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