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OBXMom

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Celiac.com - Celiac Disease & Gluten-Free Diet Support Since 1995

Everything posted by OBXMom

  1. OBXMom
    My son was tested for celiac disease as a toddler. His pediatrician strongly suspected it, and sent us to a specialist, who told us he did not have celiac disease based on blood results. At 7 a different GI diagnosed him based on blood work, then a biopsy. I would give anything to have had him skip those 5 years of pain, poor growth and developmental delays...
  2. OBXMom
    Schar makes our new favorite prepared crust (and our new favorite multi-grain sandwich bread, too.)
  3. OBXMom
    Has anyone had experience with a child who gained too much weight following diagnosis? How did you handle this? My son had not gained weight for years prior to diagnosis, so we were thrilled when every doctor's appointment showed him a couple of pounds heavier. Now, 2 years later, he weights 20 pounds more, and a significant amount of it has settled around...
  4. OBXMom
    My kids think they are delicious, but they turn my mouth inside out they are so sour. I guess the sourness, plus the fact that one dose is several in a foil pack, is to disguise the fish taste. I looked for a phone number on the box to see if I could find someplace you could call for a sample, but no luck.
  5. OBXMom
    In addition to a multi-vitamin, I give my kids calcium (Nutrition Now Soft Chews) and omega 3 (Rainbow Light Gummy Omegalicious.) The calcium is because I have one child who has a bone cyst repairing itself and another who avoids milk due to an automimmune response to casein - nothing to do with focus. But the omega 3s are to help with focus. Whether it...
  6. OBXMom
    Thank you, Peter! I appreciate this so much. I feel like I have been getting so much information piecemeal, and this will will help a lot. - Jane
  7. OBXMom
    Thank you for letting me know. It is upsetting to me that although I have only been learning about the gluten-free diet for 2 years, I'm already out of date. Can you recommend any really great current source that consolidates ingredient information? (Don't mean to sound lazy, but the multiple source thing is a bit beyond me . . .)
  8. OBXMom
    Are you sure MSG never has gluten? My triumph dining cards puts it on the "I cannot eat" list, and I know I have seen it in a book or two. I'd be happy to learn they are wrong, of course.
  9. OBXMom
    I know I should have done that, but I was just too horrifed, and flushed . . .
  10. OBXMom
    My son, who has chronic constipation despite daily miralax, has had diarrea the past couple of days. This morning he called me to see a worm at least 1 inch long swimming in the toilet after he used the bathroom. It was black, flat, with lots of feetish things and a fabulous swimmer. It didn't occur to him that it came from him, and he went happily off...
  11. OBXMom
    According to their website, not all locations have gluten-free pizza. I used their search engine to look for locations, and noticed many did not offer gluten free pizza. Maybe the site isn't updated, but check before you visit.
  12. OBXMom
    Linda, we love Manteo! I know you aren't as interested in restaurants, but we have found the Blue Moon Cafe to be careful and a fun place for lunch. We are in Corolla, which makes Manteo look like the big city. Like everyone else, we like the Food Lion best - they generally have a few gluten-free staples, but not a great variety. Harris Teeter does have...
  13. OBXMom
    My daughter had eczema during breastfeeding, then when we started solid foods at 6 1/2 months, she was allergic to everything we tried. At 8 months we went to an allergist with a lot of experience in food problems, and he guided me through the foods we added to her diet, which were not at all the normal food progressions. It sounds like a great idea to...
  14. OBXMom
    Kristi, yes, celiac can be quite cyclic. My son seemed to have more tummy bugs than anyone else, and I thought, well some kids get sore throats, some get tummy aches. Then over the phone a nurse casually said to me during one episode, "That doesn't sound like a virus." The light went on, and I suddenly knew it couldn't all be viruses. I marched back to...
  15. OBXMom
    Thank you so much for taking the time to share this with me. I did not know any of this, and looking at the symptoms, it is quite possible my son could have a B 12 deficiency. He tires quickly, and a couple of times lately he has told me his hands or feet have fallen asleep and that they still have the tingly feeling hours later. I will definitely try...
  16. OBXMom
    My son used to have frequent tummy aches with low grade fevers before we got his diet sorted out. I don't know how many times I kept him home from school because of the 24 hour-no-fever rule when I was pretty sure it wasn't viral. Whether it is really that food issues make a child more susceptible to other allergy and viral problems, I don't know. I just...
  17. OBXMom
    Raisin, I understand some of what you are saying, but some of it seems a little unclear to me. "Saying it should be illegal.. is so many kinds of unrealistic. The entire issue is about legality, already. . .The fact is, companies do get sued of ridiculous things they have no personal control over, on a regular basis." I want the FDA to be held accountable...
  18. OBXMom
    Thank you for your help. Writing to the FDA is a great idea. I would not be surprised if the FDA finds itself held accountable for not requiring gluten to be labeled in the courts at some point if they don't listen. I did not know some local pharmacies would fill 90 prescriptions more inexpensively, either, so thank you hermitgirl for that tip. I'll check...
  19. OBXMom
    Our new mail order pharmacy (Wellpoint Next RX) called me about my son's prevacid prescription, which he has been on for years and which we know is safe. At first she said that they cannot check for gluten because manufacturers do not have to disclose it, and she would like to remove the celiac label from my son's file or they would not be able to fill his...
  20. OBXMom
    My husband purchased a frozen Ukrops turkey breast which says flavorings in the ingredients. It is not listed on the store's gluten free list, and the store manager did not know for sure when I called. Does anyone happen to know if Ukrops' frozen turkeys are o.k.? I realize it is a long shot, with Ukrops being a regional chain, but we are out of town,...
  21. OBXMom
    My daughter had no problem eating gluten free when she was with the family in support of her little brother with celiac disease, but this week we learned she, too, has gluten & casein sensitivity through enterolab, and that is a whole different ball game with her. She was angry, and said, it is one thing to choose not to eat it, but now that I find out...
  22. OBXMom
    I know, it is terrible to think you could be so careful and still be serving gluten. Today I read in The Gluten Free Bible that you shouldn't worry so much about disclaimers from companies if gluten isn't in the actual ingredients, but that seems contrary to what lots of folks around her say. And when your child is suffering, you have to keep searching...
  23. OBXMom
    Thank you, Nora, I will pore over these. I wish I could absorb all of this more quickly. I really appreciate the help.
  24. OBXMom
    Hi Fedora, My husband says he will just do a gluten free trial with us, but I wonder if he would be more convinced if we tested him, too. His only symptoms are bad allergies and skin rashes (not DH.) I have to tell you, I checked Enterolab constantly to make sure the results weren't posted while we waited, and the day that I thought was 3 weeks I called...
  25. OBXMom
    Dyan, we were in the exact same boat, not enough improvement in 6 months. The bloodwork came back better but not normal. (From 216 before diagnosis to 6, with 3 being the top normal.) The nurse wasn't concerned because his numbers had been very high and dropped a lot, but it is still hard for a Mom not to worry. You know, we switched brands of rice cakes...
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