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About dedeadge

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  1. JosieDaisy, I have a 15-yr old daughter who was diagnosed w/ celiac disease 13 months ago and has been gluten-free since. Before she was diagnosed, she missed several weeks of school a year. In the 7 months she's been in 9th grade, she has only missed a few days, which is a huge improvement! So, when were you diagnosed with celiac and have you gone gluten-free?
  2. has not set their status

  3. Can you provide more information, or a website, regarding this CSA conference in Minneapolis this summer?
  4. Don't accept the "it's not Celiac" so easily. It took 4 years to finally diagnose my now 14-yr daughter with Celiac (literally diagnosed today). It started with bone injuries/fractures, then joint pain, muscle pain, abdominal pain, failure to thrive, irritability, chronic consipation, frequent headaches (which developed into migraines after more than a year), ear aches and sore throats, Vitamin D deficiency, the list goes on. After numerous blood tests, stool tests, five EGD's and two colonoscopies, we finally got our diagnosis. If you haven't already, read 'Celiac Disease, A Hidden Epidemic' by Peter H.R. Green, M.D. (the leading expert for Celiac Disease in the country). There is a genetic component to this disease, so think about that as well. We don't have ANYONE in our family with a confirmed diagnosis, but I'm willing to bet that my daughter's paternal grandmother has it (my MIL), but has never been diagnosed. Sorry for the long note .... good luck to your daughter and don't give up on finding an answer!
  5. I failed to mention that my daughter is being tested (again) for celiac. She needs to be on a high gluten diet for three months in hopes that she'll be "ripe" when she undergoes another EGD.
  6. 13-yr old daughter needs to be on a high gluten diet, specifically 1 Tbs gold medal flour a day. She's not a sweet eater, so she doesn't want me to bake her anything. She's eating bread, pasta, etc., but the doctor also wants to add flour (how, I'm not sure). Appreciate any suggestions.
  7. Definitely call your doctor and ask for additional information. An inflamed esophagus could be many things, two of which are acid reflux and Eosinophilic Esophagitis (EE), both of which can cause inflammation (my daughter has both). Ask him specifically if they did a biopsy of the esophagus and if they tested for the # of eosinophils (anything higher than I think 10 is indicative of acid reflux and/or EE). Your doctor's office should have called you (either way). If you're not happy with what he/she tells you, get a second opinion.