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ryebaby0

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

Everything posted by ryebaby0

  1. ryebaby0
    Add us in too -- my son was "dx" with JRA about 2 months before his celiac dx. (I cry, thinking of how he limped to the bus stop and we kept trying "better shoes") The phantom/pins/numb pains in his legs did eventually go away as well (although when it's really hot, they seem to reoccur in a less-serious way) A multi-vitamin is sometimes helpful too, I've...
  2. ryebaby0
    I say this all the time, sorry for the repetition: If you really feel like he's not responding growth-wise (and it will vary, but you should see some response) have his zinc levels checked. I never knew it mattered -- zinc? -- what's that for? , but when my son was dx that was one of the first things they added to his meds. Apparently, a zinc deficiency...
  3. ryebaby0
    What a nice thread! This fall, friends of ours invited us a small dinner party, and she had obviously "read up" on x-contam. issues and gluten-free food. But still, you don't hope for much. When we got there, ALL the food was "whole food" -- nothing at all he couldn't have, all served in glass, a separate grill covered with foil with a serving of the three...
  4. ryebaby0
    I don't think these people are irresponsible, giving them the benefit of the doubt (which they may or may not warrant). I think they are ignorant. And if we, as parents of children with specific issues, get nasty and remove our children from every situation that isn't working perfectly, they will spend their lives at home, or never without us, or tagged as...
  5. ryebaby0
    I was the Christian Ed director at our church of 450+ for about 10 years, so here's my perspective and some unsolicited honesty... ..Churches have extremely variable and inconsistent volunteers, and policy "enforcement" because of that. Because you tell one person something in no way assures that everyone "knows". Because they try a strategy doesn't mean...
  6. ryebaby0
    5 years ago next month, my son was dying. 5 years ago, he had already missed 2 months of school 5 years ago, his doctors were working as hard as they knew how to diagnose him 5 years ago, we didn't know it would get worse, much worse, before he got better 5 years ago I cried when I realized he would never eat a Ritz cracker again 5 years ago I cried...
  7. ryebaby0
    These are questions for your doctor, of course. But try comparing her height/weight percentile curve, not the actual numbers. She may still be progressing, or maybe she _is_ stalled at a percentile that is unacceptably low. Another thing to check is her zinc levels. I had no idea, but apparently zinc is essential to growth, and if she was deficient at diagnosis...
  8. ryebaby0
    I could have sworn someone here mentioned a major-brand hotel that had a small Whole Foods store right in the hotel, in the greater DC area. Am I imagining this? (Because, you know, I do that sometimes.... thanks! joanna
  9. ryebaby0
    When my son was 10, he developed "intractable D" (basically, severe D that doesn't get better), severe joint swelling, and lost 15% of his body weight. In retrospect, he was always very small, slow-growing, with digestive issues and lots of gagging over food, especially (wait for it) cereal.. We were all tested after his dx. My other son and I were clear...
  10. ryebaby0
    As most of you know, my son was dx 5 yrs ago next month, and was off-the-chart underweight. He's now in the 50th for weight, and 80th for height -- he's grown 8 inches and is closing in on 6ft. (He's 15 now) One thing I haven't seen mentioned: if your child has bloodwork done, have their zinc levels checked. Children's proper growth is drastically slowed...
  11. ryebaby0
    It must be very hard to have one dx so young. Imagine how confusing it is for him, to sometimes be allowed gluten, and sometimes not. Try and think of it like playing in traffic --- you'd just never allow it, no matter the circumstances, or how inconvenient, etc. But it is hard. In addition to all the great suggestions already, you might add some super...
  12. ryebaby0
    Good friends usually ask about gluten-free candy, and have a jumbo-sized treat for him at their house; he trick-or-treated with a friend with food allergies, and they actually kept score of who was "doing worse" with great pride ("I can have most of this. Paul can only have the skittles, so he won" they recounted). I'm not a huge candy fan, so my...
  13. ryebaby0
    I am not the celiac -- my husband and son are -- but I can tell you with certainty that you need to be gentle with yourself early on. It's grief that you feel -- grief for the food you can't just eat mindlessly, the dinners that will never be as simple, the eating out that will be calculated, the stupid well-meaning comments, the explaining and explaining...
  14. ryebaby0
    Penn State's main campus here in University Park just this semester added a limited (very) gluten-free menu. Gluten-avoiding students/guests/staff can email or call one of the two dining halls that are offering it (there are something like 7 or 8 dining halls, plus many other eateries on campus) , request an item from the menu, and a manager will prepare...
  15. ryebaby0
    Two more things to add to all these great suggestions: I gave my son's teacher a list of mainstream food he can eat, (like Lay's plain chips, skittles, etc.) and we stocked a rubbermaid shoebox for her to keep in her closet for those "whoops" moments. It made _her_ feel better to have it. Also, for lunch I would pack a placemat along with the food....
  16. ryebaby0
    I wasn't sure where to post this.... My son works at one of the PSU dining commons, and just brought home a new flyer that says "Penn State is happy to announce the introduction of a gluten-free menu to accomodate the special dietary needs of stduents and guests with celiac disease". It goes on to list common sources, how to contact dining services...
  17. ryebaby0
    As the non-celiac (but still the cook) in a household of 4 that's 50% celiac: we don't have wheat flour, or flour-containing mixes, in the house at all. You cannot GET the stuff out, once it's open... we do have a top shelf of gluten-containing food in a pantry separate from the rest, and a sealed box for bread. we do have a cabinet of gluten...
  18. ryebaby0
    It depends very much on the individual, but it could be as quick as a week to see some improvement or as long as a month. Longer than that, and you want to double-check her diet and everything else that contacts her hands/mouth. It will be longer for a 100% recovery, but certainly it's reasonable to expect some improvement along the way. I agree that you...
  19. ryebaby0
    It is true that the Americans w/Disabilities Act requires school districts to make "reasonable accomodations" for students with documented medical food issues. Our district (www.scasd.org) has forms you fill out, then you have a meeting with the food service director and then the building cafeteria director to determine what you can and cannot have. We have...
  20. ryebaby0
    Most McD's soft serve (as opposed to DQ) have a doohickey that keeps the cone away from the housing, so I wouldn't worry exceptionally about cc of your dish. If you want the deluxe ice cream experience, go to Cold Stone Creamery, where they will make your order on a separate slab, with newly cleaned servers and ice cream. Nice people.... I once had...
  21. ryebaby0
    My husband was dx when he was 40, only because we all had celiac panels after my son was dx. DH had no obvious and glaring symptoms, but once on a gluten-free diet he felt, digested, and thought better. He had of course assumed that his minor symptomatic episodes were how everybody felt about life. Anyway, my point is that yes, your daughter could be celiac...
  22. ryebaby0
    We have one in our car, and my husband and I both carry them. It does tend to make restaurants take you more seriously (we explain what we need, and then hand them the card "please give this to the cook and bring it back") and streamlines questions. For $1.50, it's a pretty handy thing!
  23. ryebaby0
    Yes, it is rare, but not unheard of. There are lots of case studies of steroids used in celiac treatment for cases that do not respond. There is disagreement whether some celiacs need steroids, or whether it's a different condition altogether. My son was already dx celiac and was npatient for continuing decline despite being on a very strict gluten-free diet...
  24. ryebaby0
  25. ryebaby0
    When my husband and son have gone to Scout camp, we sent all their food (frozen home-prepared meals, packaged and labelled for each day) and it was kept in the kitchen walk-in. I also visited camp in person to talk to the cook My dh would get their food and nuke it himself (the kitchen was unbelievably unkempt and run largely by teenagers). Nobody got sick...
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