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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
    Why don't you call your doctor's office and say you won't be able to sleep until you find out what the range is? I don't have any confidence that they would know, since your doctor was so misinformed about celiac, but I bet they'd find out and tell you. In a quick search on this site I found your son's number would be in the low normal of some ranges, and...
  2. OBXMom
    There is definitely a link. I have read that all diabetic children should be tested for celiac, as an alarming percentage of them have it. Autoimmune diseases in general tend to cluster, meaning having one puts you at risk for developing others. My son has vitiligo in addition to celiac. It is just a few white patches on his skin, and he is so pale that...
  3. OBXMom
    Thank you both for your help. I will add what I learned, too, in case anyone in the future does a search with a similar question. Carnegie Deli was worried about cross contamination in their sliced meats, but recommended the tuna and chicken salads. Dallas BBQ said their roasted chicken is safe, and recommended asking for a baked potato instead of the...
  4. OBXMom
    My son did have joint and bone pain, and it took about two years of gluten free living for it to stop. I kept wondering if he could have another autoimmune problem, it was scary. I wonder in his case if it was partially the rapid bone growth that caused the problem. He was a small, slow grower and immediately began to grow faster when he went gluten free...
  5. OBXMom
    My son's tummy bugs were worse before his celiac diagnosis, and have gradually disappeared (knock on wood). He still is susceptible to stomach pain unrelated to viruses. For him, it has been constipation - not that we were aware of, since he was still "going", but which was found by xray, and difficulties with other foods. The constipation is unlikely...
  6. OBXMom
    I'm sorry your little guy is having such a hard time. Have you seen an allergist? I would look for a pediatric allergist who specializes in food allergies, if you haven't already seen one. With the constant congestion, even if it is celiac disease, there is probably an allergic component going on. Many times celiac and allergies do go hand in hand, and...
  7. OBXMom
    My daughter is traveling with a school group to New York, and they are scheduled to eat at the Carnegie Deli and Dallas BBQ. Does anyone know of any gluten free options at either of these places? She is a little intimidated about asking for gluten-free foods, and I am trying to make it as easy as possible for her. Also, if anyone happens to know of...
  8. OBXMom
    This is one of those many days when I wish I had a medical degree. Many of the symtpoms you describe could definitely be due to celiac disease, others, I'm not sure about, but that is just my ignorance. Nothing is harder than waiting for those specialist appointments, is it? At least you are armed and ready with all your facts and observations. Definitely...
  9. OBXMom
    Jennifer, I am so sorry that your children have had such a tough time. I remember those days before my son was diagnosed with celiac disease when he constantly had "tummy bugs". It was only when a nurse I was talking to over the phone said, "It doesn't sound much like a virus to me" that my light bulb went on. I thought, she's right, it must be something...
  10. OBXMom
    Your daughter sounds like my daughter used to be, and I felt really sad for her as I read your post. We pulled out the stops to deal with my daughter's organization issues in middle school. I found a young counselor who had ADHD herself and she helped my daughter a lot. We also had meetings with all her teachers together, and they were very helpful. My...
  11. OBXMom
    Did you make a formal request in writing for a 504 plan, and was a meeting held that determined your child is ineligible? According to federal law, an eligibility meeting must be held, and you must be notified when it is held, in response to any request for a 504 plan. Since celiac disease is not specifically listed under section 504, you may have to make...
  12. OBXMom
    Two inches growth in three months is awesome! I don't know whether thyroid treatments can result in this kind of growth, but celiac children who are treated can definitely have growth spurts. My son went from 25% in height to 50% within 6 months of diagnosis. His constipation did not go away right away, either, and he is still on miralax. He also has...
  13. OBXMom
    I can certainly understand your concern, if you have been gluten free for 6 months and still have such a high number. My son started in the 200s, and after a year he was down to 60 - still not in the good range. It took another year to make it down into the safe single digits. Our GI doctor said that the higher the number is, the longer it can take to...
  14. OBXMom
    While we are on the subject, celiac disease also can cause delays in tooth development. The dentist said my 10 year old is about 2 years behind. I'm just happy that he is expected to catch up. I know this doesn't answer your original question, LJ Mom. I agree with whoever said the doctor is probably confused. Maybe he was confusing gluten with milk...
  15. OBXMom

    ARCHIVED Reputation

    OBXMom replied to OBXMom's topic in Board/Forum Technical Help

  16. OBXMom

    ARCHIVED Reputation

    OBXMom posted a topic in Board/Forum Technical Help

    May I please have a bit more clarification on how "Reputation" works? First, does every number represent one vote on one post? Since you can only vote a post up or down, I am assuming "Neutral" means that you haven't reached some critical mass required to move to the next level. How many votes are required to leave "Neutral," and what are the next levels...
  17. OBXMom
    I just noticed that sadly, I have a -1 reputation. Does that mean one person doesn't appreciate me, or does it mean one more person voted me down than voted me up? I admit my feelings are a little hurt here. . .I thought everyone liked me as much as I like them . . .
  18. OBXMom
    I just had to let you guys know that protein has helped enormously. This was an easy thing to try first since my son is a major carnivore. Anytime I gave him a little snack, I made sure it was high protein. (Lots of cheese sticks and vienna sausages.) At first he started saying, wow, my arms aren't bothering me all the time. Then, he had TWO games Saturday...
  19. OBXMom
    Our doctor came out while my son was being prepped, and just before his biopsy, and made me sign a paper that my child could die during the procedure. I asked if anyone had ever died when he performed one, and he said no, and I remember thinking, be thankful for small blessings. If I had known of the risks, and if I had also known what his doctor said at...
  20. OBXMom
    Our pediatrician told me he thought my son had celiac disease at 2, put us on a gluten free diet and sent us to a specialist. My son tested negative, maybe because of his age and maybe because he had been on a gluten-free diet, either way, I'm still sad that he wasn't diagnosed until 7. When I think of all the problems he could have avoided. . .Wish I had...
  21. OBXMom
    This is such a tough one - and we have definitely been here. The psychological effects of a chronic illness are undeniable. But I can't tell you how many times my son's symptoms ended up having a phsyiological basis when we thought it was all in his head. For example, his tummy always seemed to hurt more when he played his cello. We kept asking, "Are you...
  22. OBXMom
    Kim, I would love to hear what your doctor says and what you continue to learn about this. I looked at your link and a few other webpages, and learned my son has many signs of a yeast overgrowth: dry skin, athletes foot, recurring diaper type rash (without the diapers, of course), cracks under his ears and at the corner of his mouth. Unfortunately treatment...
  23. OBXMom
    Excellent thought. My son does have flat-looking feet. Sometime I read that if they can arch in some way you can't actually call them flat feet, but he does roll inward. I purchased some decent orthotics for him one time, I'll dig them out and see if they help. Are flat feet part of the damage celiac can cause to bones, I wonder? Welcome to the board...
  24. OBXMom
    My daughter was in the same boat - tested after little brother was diagnosed, and found to have an autoimmune response to gluten (and casein) but no symptoms. The difference was that she had seen her little brother suffer for years, and did not need any further proof. She said, "If I can avoid all of that, I want to", refused biopsies but immediately went...
  25. OBXMom
    Corn - it is so funny, I was just wondering if my son might be eating too much of it. He had to avoid it at first, and I was just thinking about how much he probably eats now between his cereal, popcorn, corn tortillas, etc. Thank you for reminding me that I can't give up sleuthing. Guess I'll dig out the old food diary and see what I can figure out.
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