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seezee

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Everything posted by seezee

  1. seezee
    That happens to my nephew who has celiac too. I think it's pretty common.
  2. seezee
    A couple of other suggestions - really cool lunchboxes. We ordered some made by widkins with horses. Meeting other kids with celiac if you can find them helps. Learning to make favorite foods gluten free helps.
  3. seezee
    One of my daughter's friends has many food allergies. She always has a lunch box filled with plain cut fruit, plain boiled chicken shredded, rice, and some other things and wet ones to clean her hands. We also found the nutritionist pretty helpful. Even with us just cutting gluten prepared and packaged foods are usually not so great.
  4. seezee
    Children's Hospital Boston has a celiac support group. They have parties and picnics. Last spring they arranged potlucks for families. I don't think you have to be a patient there to join, although the GI celiac specialists are really good. They also have great resources for school. Open Original Shared Link
  5. seezee
    I bought a couple of cookbooks and really haven't liked them too much. A lot of the food seems to come out dry. I have much better luck using a regular cookbook with recipes I like (except for yeast breads) and adapting the recipe using a gluten-free flour substitute or if the flour is just for thickening substitute corn starch, gluten-free bread crumbs...
  6. seezee
    We had a really hard time this year with the teacher. I wrote about it a couple times. You can look in the teenagers and your adults section for more details (under privacy and your feelings about it and under baking, teachers and school). The clinical social worker with the GI dept. at Childrens Hospital was really helpful in showing me how to advocate....
  7. seezee
    There are gluten free rice krisps made by Erewhon. We also made them with Rice Chex which tasted more close to Rice Krispies. Did you see Kraft's explanation of how they label foods? Open Original Shared Link
  8. seezee
    I checked with an attorney and the hospital social worker and I think it is not HIPPA but FERPA applies to schools. (Open Original Shared Link) However, private schools aren't exactly required to follow this rule necessarily or accommodate a disability since they don't get federal funding. I had also requested that they had a plan to clean the desks before...
  9. seezee
    My nephew took two years to get to normal. Are the results lower than they were?It can really just take a long time.
  10. seezee
    My sister and mother bought me a nice stand mixer and I make cookies now. We had bad luck with the gluten-free versions as they were also generally everything else free (eggs, dairy, etc.), so can be kind of made with rice and sugar and they are super expensive. There are a couple brands of gluten-free flour that you can replace 1-1 in recipes with wheat...
  11. seezee
  12. seezee
    I found that a bread maker really helps. They are about $100, but it makes life so much easier. I had bad luck with the bread in that it tended to collapse. We like the gluten free pantry favorite sandwich bread.
  13. seezee
    My daughter was ten when we found out, so it's probably different. She did start to gain weight and grow quickly after we switched her diet. We went through all the tests because the doctors thought it was important to know the extent of the damage. I think her bloodwork was so high that they diagnosed based on that. I had her scoped too. My nephew was little...
  14. seezee
    Met with the head of school and it was awful. I brought the class room parent. He pretty much said that even though it says in their handbook in about a dozen places that there is no food sharing at the school that in actual practice food sharing occurs in classroooms regularly and he felt the staff would need additional training to understand the rule. He...
  15. seezee
    We go to a Thai restaurant that they know us at and they seem pretty good at telling us what has wheat. So far so good. There are two restaurants we go to and both are small places that they know us at. We have had really bad luck at corporate chain kind of places.
  16. seezee
    I had the same situation. I waited a while and she really started to feel icky. At first we had her tested because my nephew had it and she stayed at the same weight for a year. I called the GI dept. and said she was going to stop eating gluten biopsy or not. The nurse argued with me a bit and then put me on a list to call if there was a cancellation. Luckily...
  17. seezee
    Still fighting the school. The social worker who is a celiac specialist at the hospital is assisting. The medical team is very concerned. I can see now why there are federal laws about this. The school's approach seems to be to try to ignore it. SW says this is a common technique given that many parents give up. The problem is she says the emotional and physical...
  18. seezee
    Ask her to see an endicrinologist. (I have Graves diseas daughter has celiac.)
  19. seezee
    But that's different. You might not be so happy if your supervisor at work had a meeting with you and all your co-workers to talk about what to do about someone who doesn't want to eat the cake at his birthday party and made each one to say what they thought should happen. It's fine when it's your choice to make decisions about what you want to do at a social...
  20. seezee
    Follow up - she had an appointment with her GI doctor who was stunned. She put us in touch with the celiac medical team clinical social worker who is helping us out. I sent a very strongly worded letter based on their advice to the head of school. Haven't heard back yet, but teacher was not in school today. Daughter seemed so happy when I picked her up as...
  21. seezee
    Maybe these would be helpful; Open Original Shared Link I am kind of messy and busy so find it's easier to keep gluten out of the kitchen altogether for me than to deal with crumbs. (eg The phone rings when you are cutting a bagel and then it's your mother-in-law who needs you to look something up for her and then your baby needs her diaper changed...
  22. seezee
    In kids weight loss or no weight gain is a symptom. Since you are gluten-free give it a try.
  23. seezee
    Look here for allergen information on MacDonalds: Open Original Shared Link French Fries: Potatoes, vegetable oil (canola oil, hydrogenated soybean oil, natural beef flavor [wheat and milk derivatives]*, citric acid [preservative]), dextrose, sodium acid pyrophosphate (maintain color), salt. Prepared in vegetable oil (Canola oil, corn oil, soybean...
  24. seezee
    I really appreciate all the advice and support. We have April vacation coming up next week and I will think about all of this. My sister is a very good letter writer so I think I will start with a strongly worded letter. I can't change what has happened but I can try to make sure it doesn't happen again or to someone else.
  25. seezee
    Thanks - This year we (husband and I) met twice with the head of the school to discuss this and other issues and I have talked several times with the school nurse about this the teacher. I think the teacher will say that she accidentally blurted it out. The principal told me that she just doesn't get that what she did is wrong or a big deal and seems...
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