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goldmama22

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  1. Thank you for the information. We will give it a couple more weeks for sure, then. Oh, and I weighed her and she's half a lb above her highest weight ever. Megan
  2. Two weeks ago we removed gluten from my 3 year old's diet after inconclusive tests for Celiac. Her dr did not suggest it. Her dr suggested watchful waiting... oh gosh I will give background. First though let me say my questions are how long to keep her on the gluten-free diet before doing a reintroduction. I know allergies are two weeks but is it longer for celiac disease? So the background is that at 19 months, right after we were told to see a nutritionist and run some blood tests b/c she was too skinny, she was hospitalized for a GI flu. She stayed 3 nights, went home, crashed and burned, got readmitted barely conscious the next day, and after CT and spinal tap they decided a combination of the GI flu and her low weight had shut down her digestive system. They put in an NG tube, she was discharged 4 days later, and she was on the NG tube for a total of 3 weeks. Since then we have been working with a ped GI'ist who has had her on a high calorie diet - lots of added fats and other nutrient-dense foods. Since then she has been sick frequently, and she always loses weight really fast when sick, and a few weeks ago when my baby got Roseola (which she got as a baby already) she spiked a fever up to 104.3, and she had a fever between 100-103 for 12 days straight. Since then her temp has not gone below 99.3. She lost 2 lbs in the first week of the illness (and was at the lowest weight her dr was happy with before having lost the weight). On day 11 of the fever her dr ran blood tests for infection and for Celiac. One of the 3 celiac disease tests came back positive, but it is apparently the one that is most frequently a false positive compared to the other two - less specific but more sensitive, she said. So she said we should just see what happened with my dd's weight and if it rebounded to just assume it was a false positive and keep going forward with just a high calorie diet (and if it didn't rebound, do a biopsy). I just wasn't comfortable doing nothing. (Watchful waiting sucks, but also, what if we're controlling her weight with fat when we could be increasing her absorption of nutrients by going gluten-free?) So we cut out gluten. But without her dr on board with us, I'm at sea. Help me out - how do we do this gluten-free test? How long for the gluten-free before reintroduction, and then how long after reintroduction would we wait to see symptoms? Elly has gained a lot of weight back. I haven't gotten to weigh her yet but I can tell b/c her butt has a couple dimples. But I felt it was too risky to take her off the high calorie diet over the last couple weeks, so I can't rule that out as a cause - that is why reintroducing gluten is so important to us. If you read all this, thanks, and if you didn't I totally understand but I hope you'll answer the questions about timing. Megan
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