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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
    A tendency toward fibromyalgia does seem to run in families, but unlike celiac, it is not an autoimmune disease. It is great to hear that your daughter is getting stronger and better. When I think back on how far my son has come, I feel so grateful, and I love to hear about other kids doing well. My guess is that your daughter's weight will catch up. ...
  2. OBXMom
    We all fight the allergy battle at my house, and as in Missy'smom household, it usually isn't easy to do. You have to take environmental stuff as well as food into account, and determing culprits then how to handle them is tough. I think finding the right allergist is really key. The one that helped my son prided himself on being the best around in dealing...
  3. OBXMom
    Nightingale, your comments totally struck home. My son is one of those get-to-the-ball-first-or-die-trying kids, and I guarantee that if he knows what his limits are in practicing, he doesn't care. And because his recovery has not been as fast as some, I do think his stamina is still probably not at his peak level. You mention glutamine - do you happen...
  4. OBXMom
    Extra protein makes sense, doesn't it, when your muscles are being taxed? Thanks for mentioning it - we certainly have nothing to lose by a quick snack after practices.
  5. OBXMom
    Excellent points on how to address the doctor, thank you. "Interfering with daily life" is the important point for doctors, I learned when I finally convinced my GI guy that my son was sick enough to get aggressive about determining the root cause. Thank you for the CBC link, and mentioning thyroid. We've never had this checked, and I think it would be...
  6. OBXMom
    Seezee, thank you for sharing about your daughter. Does her reduced stamina seem to just affect her while she is practing and playing, or afterwards? Your mention of arthritis also brought to mind fibromyalgia, which my sister has. Hopefully it is nothing like that, but I do need to keep searching.
  7. OBXMom
    I am sorry your daughter is having such a hard time. If I were you, I would definitely see a GI doctor, and be a little pushy about getting answers when you are there. When my celiac son tested negative as a toddler, I went to the GI doc, and continued to go every 6 months for years with little results. It wasn't until he was 7 and I said, enough, we need...
  8. OBXMom
    My 10 year old son is not recovering as well from his lacrosse practices as I think he should. Three days later he is still wiped out, physically and emotionally. It was the same with soccer in the Fall. At the beginning of the soccer season we were thrilled that he finally had the stamina to play a team sport, and sure that he'd be less fatigued by the...
  9. OBXMom
    Have you seen a GI doc? If your child is having daily tummy aches and angina type pains, I would definitely see a specialist. I am sorry your daughter is having so much trouble. I remember constantly googling lists of my son's symptoms trying to figure out his many issues before he was diagnosed with celiac. Ironically, celiac disease came up a number...
  10. OBXMom
    I can't tell you how sorry I am that that happened to your son, after you went to such lengths to supply safe snacks and to make sure everyone understood. I really think you should put this incident in writing, and send it to whoever you can think of. (School director? Governing board?) I would include in my letter some basic information about celiac...
  11. OBXMom
    My son was several years older than yours when he was diagnosed, so we never dealt with the problems a toddler classroom presents for a celiac child. You have gotten a lot of good snack ideas, but I would encourage you to help your church and school set up some safe eating practices. If the children only eat and drink while sitting, crumbs should not get...
  12. OBXMom
    We did do a repeat biopsy for my little guy. He was not improving on a gluten free diet, and the doctor was checking for other potential issues at the same time. (Thank you to everyone who was kind and supportive to us on this board during that scary time.) It was helpful to see his healing process was just not completed yet, but that he was healing. But...
  13. OBXMom
    We do not have a 504 plan, mainly because my son's teachers have always been understanding and supportive. I was asked to write a letter about his diagnosis, and it is on file in the nurse's office. By the time my son was diagnosed at 7, he was cautious and a good self advocate as well. If my son was younger and if the teachers less supportive, I would...
  14. OBXMom
    Search this website for "Enterolab" and you will find lots of information. Some doctors do support it, and people definitely do test negative. A friend of ours with a celiac Mom and many longstanding GI issues tested negative, so maybe they have false negatives, too. . . I'm not sure about their expertise with very young children, but I'm sure if you call...
  15. OBXMom
    We made different choices for different family members. I am very glad my son had the biopsy. He was the first one diagnosed, and had by far the most severe symptoms. When he failed to feel as much better as expected within a year on a gluten free diet, we did a repeat biopsy, which showed partial healing. It was great to know that he didn't have additional...
  16. OBXMom
    I don't know exactly how long, but I just wanted to say good for you to have figured out the importance of eating gluten for the testing. My doctor's pediatrician suspected celiac when he was 18 months, took him off gluten and sent us to a specialist. By the time the specialist tested him he had been without gluten several months, and he incorrectly tested...
  17. OBXMom
    Our elementary school prepares gluten free meals for my son. I believe they do so in compliance with disability laws, and I wanted to share our positive experience. We recently moved and enrolled my children in a new school system. My 4th grade son had never eaten school lunches in the past - he was extremely picky due to his painful experiences with...
  18. OBXMom
    No suggestions, but just total sympathy. You don't realize how many kids' events center around pizza and cupcakes until you have a celiac child. My kids are pretty relaxed about not eating the same thing everyone else does, which I think will make things easier in the years to come, but I do feel sorry for them.
  19. OBXMom
    I'm sorry about your little guy's stomach aches. Could you do a blood test at least? Then if it is positive, and based on a genetic predisposition, maybe you could choose to skip the biopsy. The only problem about just cutting out the gluten is that if his tummy still hurts (and a lot of times it does for quite a while during healing or because the celiac...
  20. OBXMom
    If it was me, I would find out what the blood results were, and the scale used. You have probably learned that a biopsy is considered the "gold standard" of celiac diagnosis. My son had very high blood indicators, and based on our GI doctor's recommendation we did the biopsy. After the biopsy the doctor told me that in 30 year of biopsies he had never...
  21. OBXMom
    "for me the main issue is that I need to trust that the adults in my child's life will take this seriously and follow my instructions" I am totally with you here, but I just don't think most people can get that far out of their own box. Even well meaning people make mistakes all the time, and I don't think you can really trust very many people to follow...
  22. OBXMom
    Thank you for your thoughts, I did discontinue both, and he was better right away. Last night we also put some flaxseed into the bread we made. My son definitely doesn't get enough fiber, but we are working on it. (We had to go through feeding therapy at our Children's Hospital last year to try to get him to eat more foods, and he is better but we are...
  23. OBXMom
    It's a hard one, isn't it? Both my kids had the regular flumist, but neither has had the H1N1, because our schools said they were going to administer it (but haven't yet.) On the one hand, my son didn't feel well for a week after the flumist. His doctor says that wasn't the problem, but it sure looked suspicious to me. On the other hand, my 14 year old...
  24. OBXMom
    We recently moved, and my 9 year old son with celiac disease met his new GI doctor. As far as we were concerned, he was doing fine, although food moves very slowly through his system, and even with his daily miralax he has 5 or more small, prolonged (but soft) bowel movements a day. His doctor had his belly xrayed and learned that he had too much stool...
  25. OBXMom
    It sounds like you've had a really difficult time with your son, and I hope you get it sorted out. I wish I had some advice about the testing, but it sounds like you understand your options. . . I just hope he feels better soon!
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