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seezee

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Everything posted by seezee

  1. seezee
    We spent a month in Germany near Munich. It seemed really hard to eat out as everything is breaded and waiters. The other thing to watch out for was wheat syrup that they have in a lot of things we can normally eat here that are made with corn syrup like candy and yogurt. We cooked a lot. Train stations were especially hard as they were filled with baked...
  2. seezee
    For ice packs I often bring an empty freezer bag or two and fill it with ice from a soda fountain.
  3. seezee
    My daughter was a beast when we first went gluten free. Very nice girl normally. I don't know if it was biological or emotional or both, but it got better.
  4. seezee
    The snow is coming down and I am thinking of summer. Has anyone had good luck with a regular sleep away camp in New England? Can you tell me about it? I know some you have to sign up for months in advance. We did try camp celiac but although my daughter liked it she isn't that interested in returning there. Thanks very much, Sarah
  5. seezee
    You may want to look in to a 504 plan. Middle school is tough because they have a lot of different teachers and it's difficult for you to talk to all of them and kids are really embarrassed about being different. It's also hard because teachers make mistakes. A lot of people just think if the label doesn't have the word 'gluten' on it it's OK. I am guessing...
  6. seezee
    I have a daughter going into 8th grade. There are two things that happen that are an issue. One is adults in positions of authority with the best intentions ask her if something is safe and if she's not really sure they're frustrated with her or they think something is safe and don't accept a "No thank you" easily. The other is that they make a big deal in...
  7. seezee
    Thanks for the advice. I spoke to her about it last week and she had never heard that diet could cause anxiety. It's hard because I am not a medical professional but this little boy gets so nervous and upset that he really isn't able to do normal kid stuff. He came to our house which is on a farm with a swing and a frog pond and lots of stuff kids love and...
  8. seezee
    Does anyone have books or websites that they can recommend for a close friend of mine. Her son suffers from severe anxiety and is very fearful. He just finished first grade. She has been getting counseling and help at school. I suggested to her that it could be food related or physical. I know for example that my daughter's emotional behavior improved a lot...
  9. seezee
    My daughter had stool retention that was diagnosed via xray. (Basically that means her colon was filled with old hard poop) we worked with the pediatric GI dept. at childrens hospital and it took around a year to resolve. We had multiple visits and xrays and cleanouts. It's hard to say when it started because she was diagnosed with celiac at the end of ...
  10. seezee
    Hi - Just thought I'd point out that the NY Times and other papers have had some articles recently about the pediatric use of Miralax. When my daughter was first diagnosed with celiac she had to use large quantities for cleanouts. We had some weird side effects and switched to other things. Open Original Shared Link
  11. seezee
    We avoid any kind of buffet with lots of kids. It's just too easy to cross-contaminate. Maybe next time around you can plan a celebration activity rather than food. We just went to our exhibit night that was a half potluck. My daughter now 13 had a root beer and hung out with her friends. She ate a big cupcake at home before and had a gluten-free pizza when...
  12. seezee
    When we got the 504 plan it wasn't too much work. The nurse suggested it and we had one meeting and came up with a list of five or six things. We had many problems without one and some with one but it's getting better. The main things I really asked for was that the tables are cleaned thoroughly when there is food served in the classroom and that teachers...
  13. seezee
    I suggest you try a 504 plan that makes the school responsible for wiping classroom tables etc. If you do a web search of celiac 504 there are lots of templates. We have one and while the school isn't perfect about it they do respond if there's a problem.
  14. seezee
    Thanks so much for your response. I am pretty sure at this point I can figure out how to make the experience gluten free. The program is a few miles away and I could even bring her meals. What I am struggling with is letting go of feeling like everything is shadowed with worries about how can this work? When should I ask them about the food? I don...
  15. seezee
    My daughter was this week invited to participate in a two-week residential science and math program for very strong students. It was an honor that only the very best students in her school were invited to. My first thought was how would she deal with meals. Should I call them? Etc. etc. I'd like some advice on how to lessen my reaction from the food worries...
  16. seezee
    I think you should go ahead and make the call if waiting is making you anxious. This way you can figure out what questions you want to ask. If it's positive you can start setting up your kitchen and find out what documentation the school might need, etc., so you'll be prepared. My daughter's endoscopy looked fine too, but all the biopsies showed damage. I...
  17. seezee
    We dealt with this. My daughter was always complaining of pain after meals. The first GI doctor we saw accused her of cheating on her diet which really upset her because she is amazingly diligent about it. So, we found a specialist in pediatric GI and celiac. Luckily, Boston has dozens of people like this. I took her to a celiac specialist who order xrays...
  18. seezee
    Have they checked for Lyme disease too? The rash and joint pain are symptoms and it's pretty common in lots of places in US. My dad had it and was in the hospital for four months. He kept getting sicker and sicker as teams of specialists looked for all kinds of things. The Infectious disease guy called Lyme the great imitator. By the time they actually...
  19. seezee
    Tootsie's website has really clear information on allergens: Open Original Shared Link For example.
  20. seezee
    My sister has done some experiments with muffins to make them higher in fiber and protein using things like ricotta cheese and coconut flour. She posts them here: Open Original Shared Link The chocolate and lemon poppyseed are really yummy. I tried flax seeds but no one would eat it. The other thing to try is trail mix instead of granola bar.
  21. seezee
    You have asked really big questions. I'd suggest you try a book. Like raising our celiac kids by Dana korn or there are many others. You can get excerpts from most websites and pick one you like or maybe request a couple from the library. you can order flour online in bulk and it's not so bad. gluten-free gets easier with practice.
  22. seezee
    You may want to see Ming tsai's website, Open Original Shared Link He is very active with food allergy issues and cooking of course You can get gluten-free soy sauce. We just found a line of frozen gluten-free Chinese dumplings etc. I threw out the box, but they ave them at whole foods.
  23. seezee
    1. I think there are 4 blood tests for celiac (Open Original Shared Link) 2. ? 3. I would pursue it. Celiac can cause really bad things like learning problems, neurological problems, growth problems, and bad teeth in kids. I also think a lot of doctors don't have current information and shouldn't give advice. There are a number of pediatric GI specialists...
  24. seezee
    Haven't been to HH in ages, but we have been traveling all summer. Are you staying in a place with a kitchen? I suggest you bring a pan from home to make pasta, a colander and maybe a frying pan. Also, aluminum foil and parchment paper for the other pans. There are also these things called toaster bags that you can use to make toast. I got some and they're...
  25. seezee
    If you search this kids forum there are many other posts about lunch that will give you some ideas: eg My daughter doesn't eat sandwiches (never has even before we found out about celiac) so I pack her a hot entree in a heavy duty thermos (like the ones a construction worker would use that really keeps things hot until lunch) - some things she...
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