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seezee

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Everything posted by seezee

  1. seezee
    Hi - My husband is an astronomer and my daughter who has celiac and I are thinking of joining him on a trip to Hilo this summer. I am wondering if there is a good place to stay that has a kitchen so we can cook. I find with travel that works best. She is picky about eating out. She is a picky eater and also because she worries a lot about CC. Any other suggestions...
  2. seezee
    It may be constipation - that can cause accidents in kids. The gluten-free diet can be very low in fiber. We had the same issue. What surprised me was that my daughter had very bad stomach pains and some troubles like that, but she went regularly. However when they took an xray she was full of stool. It took three clean outs before she was OK. Our GI doctor...
  3. seezee
    This might help: Open Original Shared Link
  4. seezee
    I think it is more that you are upset that you thought this was all worked out, you had a plan in place that worked well, had an agreement with the school, and they broke their promise. I would be upset too. I think it is more about trust. Of course you can buy a thermos or a bento box, but that was not what you agreed to and that was not the arrangement...
  5. seezee
    This might be helpful? Open Original Shared Link It's an article from Scientific American on celiac disease and how it works.
  6. seezee
    There is a link on this forum to help you find doctors. You may want to see if there is one in Albany? We went to three pediatric GI doctors before I settled on one we both liked. It's really worth it. I found it is really important to find one that talks to my daughter and answers her questions. This doctor also knew about the complications, what to check...
  7. seezee
    I wanted to thank everyone for their great feedback. It really made me feel better. To follow up, we had a meeting today with the director and he plans to work with the school nurse to create and implement a policy to enforce the existing no food sharing rule. He felt it would benefit everyone at the school and my daughter certainly isn't the only kid...
  8. seezee
    You may want to try calling the GI department at your Children's hospital and making an appointment. Maybe they are waiting to hear from you or maybe they called and you didn't get the message? I find it helpful to have a diagnosis from a doctor with children. It helps with school and helps my kid to take it seriously. Also, there can be some complications...
  9. seezee
    My daughter got terrible stomach pains a month or two after she started gluten-free diet. Turns out an xray showed she was full of stool. GI doctor said that happens because diet is so rice heavy which can be very binding. The backup also caused reflux. DD tried three different clean out plans with follow up xrays and the third time worked. The doctor also...
  10. seezee
    Newman's own wheat free stuff is made with Barley flour. You can try those.
  11. seezee
    Try one of the celiac centers at a children's hospital. There are several around the country. Open Original Shared Link This one has lots of resources. You can order a DVD or watch the videos online. They also have good resources for school. Open Original Shared Link We went to a nutritionist at our hospital where they have a celiac class that...
  12. seezee
    We use the garnier fructis products that come in a bright green bottle.
  13. seezee
    Annie's gluten-free mac and cheese, gluten-free chicken fingers (either get chicken breast tenders and coat with corn meal and some gluten-free flour and fry yourself or Bell and Evan has them) sliced fruit, ice cream bars or ice cream cake, tacos or quesidillas w/crispy corn tortillas (just oil the soft ones and put them in the oven for about 10 minutes...
  14. seezee
    I don't know your family - but I assume (hope) they are behaving this way because they don't really believe they are causing harm rather than they understand it is harmful and don't care. Maybe some of the educational materials from NIH might help or some other source that they have faith in. My uncle at first thought we were doing it as part of the gluten...
  15. seezee
    I just saw this today - I am not sure it's true though since I breast fed until my daughter was 14 months old and she didn't have solids until she was six months. She came down with it at 10 six months ago. I had never heard of it when she was a baby. Open Original Shared Link See the front page of the 2010 newsletter for the article on breastfeeding...
  16. seezee
    I like your two modes. I was also a teacher and tried to see it through her eyes. We decided that she, as my daughter put it, 'just doesn't get it.' The day after Thanksgiving she asked if it was ok to give my daughter chocolate that she bought for the class even though it said 'that it may contain gluten' on the label. I told her it wasn't and reminded her...
  17. seezee
    Do they have a microwave in the teacher's break room. On many 504 plans they state you should be able to warm up food and it would be nice on a special occasion rather than having your daughter eat cold pizza when everyone else has fresh hot pizza. We are still new to this and have gone to about a dozen birthday parties. Mostly, they are fine because...
  18. seezee
    I think the point is it is a PIZZA party. It's not some other type of event that they happen to serve pizza at. The whole point of the PIZZA party is to give the kids a treat, pizza. However, there is one kid in the class for whom pizza is not only not a treat but will make him sick for more than a week. I think it seems reasonable to change the theme so...
  19. seezee
    I guess not knowing your partner, it's not clear what he needs to be convinced about or what works for him. Some ideas: 1. Meet together with the person who diagnosed your child and have him/her explain how serious it it. 2. Wait and show? 3. As a family we went to an hour long celiac class with the nutritionist - I found it super helpful...
  20. seezee
    When we are traveling or going to something like that we usually bring an entree and then get drinks, chips, candy, or fruit where we are. I am getting better at seeing the gluten-free options, but it isn't always easy to get the filling meal part. This way my daughter gets the fun part of getting a treat yet still has something that I know is safe and she...
  21. seezee
    Not sure where in Central Ma you are but Mass is pretty little as you can drive across the entire state in 2 hours. Children's Hospital Boston has a large celiac support group and the GI doctors that specialize in celiac are excellent. Open Original Shared Link I don't think you have to go to Children's for a membership since it is run by families...
  22. seezee
    Since you are in in New York you may want to check with the Open Original Shared Link. It think it is one of the best places in the world. I found that it's really hard to work with doctors who don't know much. Our diagnosis was pretty straight forward but in addition to the gluten-free diet, so far, my daughter has had minor complications due to celiac like...
  23. seezee
    No, our hospital celiac program has people (dieticians and social workers) specially trained in celiac and behavioral stuff. I don't think a normal social worker would be too helpful. Usually at each appointment the GI asks about physical, social, and emotional adjustments. Open Original Shared Link
  24. seezee
    You may want to talk to your GI about it. Our hospital has social workers to help with this aspect. Maybe that will help?
  25. seezee
    Thanks - I couldn't have said it better myself and when she brings it up again, I will say that. I think my daughter rocks too. I am very impressed with her ability to cope with this. It's not easy when they bring out the pizza and cookies at every kids social gathering.
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