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seezee

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Everything posted by seezee

  1. seezee
    I don't really get sick from gluten noticeably and neither does my nephew any more. I am an asymptomatic celiac diagnosed with bloodwork and biopsy. My nephew now 10 was diagnosed at 3 and doesn't really have a such a strong reaction. My daughter who is 15 though it's like she has food poisoning when she gets a little, so she doesn't sneak. I'll try to get...
  2. seezee
    My mom tries really hard to not allow gluten into her kitchen as I, my daughter and nephew all have celiac. However, for the third or fourth time this year my daughter has gotten very sick from gluten from a meal my mom prepared. None of us can think of what it might be? Any suggestions? Could it be something else?
  3. seezee
    The Childrens Hospital celiac support group posted this article a while ageo: Open Original Shared Link "A new blood test being developed by Walter and Eliza Hall Institute researchers can rapidly and accurately diagnose celiac disease without the need for prolonged gluten exposure." Anyways, if your child is really sick from gluten perhaps you can...
  4. seezee
    I have "silent" celiac and am IgA deficient. My doctor misread my tests 4 years ago when I asked to be tested after my daughter was diagnosed in 2009. I asked her to check again a year ago and the IgG was positive - the rest she thought were normal. After she called and wasn't sure what that meant since IgG is non-specific, I decided to go to the celiac clinic...
  5. seezee
    Another thought. I think often some adults tend to over-react. I'd add something about maintaining X's privacy and not singling her out. We had some phrase like that in our 504. When my daughter was younger teachers would sometimes send her to sit off in a corner or announce to the class that Y's mom brought pizza but because A has celiac and it's not gluten...
  6. seezee
    My daughter went to camp celiac for a week in Rhode Island. I think registration starts in Feb. She really liked meeting other kids with celiac and it made her more sure of herself. It's pretty much a regular camp other than everyone has celiac. Open Original Shared Link Sarah
  7. seezee
    My husband took me to Paris recently and there were plenty of places there to eat out and the shops had lots of both fresh and packaged gluten free food. Any health food store carries stuff. There was one restaurant that is entirely gluten-free called noglu. There was another nice restaurant that the chef had celiac and it was amazing. The French do gluten...
  8. seezee
    I was recently diagnosed with celiac after my doctor misread my lab results. I was tested 4 years ago when my daughter was first diagnosed and my doctor incorrectly interpreted the lab results as negative. My IGA was very, very low. I had a followup lab 4 years at a checkup that showed something but the doctor wasn't sure what it meant. I went to a celiac...
  9. seezee
    My daughter (14.5 with celiac) was recently found to be very anemic. Her pediatrician did some preliminary blood work which showed her counts were very low and then followed up with many tests to determine the cause and checked for things like clotting problems. She made sure it was iron defficiency anemia before asking her to take iron supplement. We did...
  10. seezee
    I had 5th disease last June and there's a blood test to confirm. I took it to rule out Lyme.
  11. seezee
    Last year I had awful joint pain and it turned out to be parvo virus and it got better.
  12. seezee
    There was a product that had something called gluten-free wheat fiber in the gluten-free meal from American Airlines that I didn't eat. It was kid of gross anyway as was the whole meal.
  13. seezee
    We went to a wedding in early June. Both me and my daughter (age 14) have celiac. She was glutened at the rehearsal dinner that I did not attend. She was with her grandparents who asked several times if the meal was gluten-free and the waiter kept saying yes. I think they confused gluten-free with vegetarian. She spent hours vomiting from about 1 am to 5...
  14. seezee
    My thought is that cable news is really entertainment. Of course fox or msnbc has some truth but both stations seem very slanted and give partial truth. The more scandal the better. The internet has a lot of misinformation too. In Massachusetts where I live we've had what used to be called Romney Care that the affordable care act is based on. It means everyone...
  15. seezee
    Massachusetts has a very strict food allergy law and mandates training for all restaurant staff. Ming Tsai (celebrity chef) worked with the legislature for years to get it passed. Open Original Shared Link it was enacted about 5 years ago and it makes it much easier to eat out. WIthin it are rules for training staff and providing safe food. As a result...
  16. seezee
    It sounds like you have some misinformation about the affordable care act. Try to find something from a more credilble source. I am not sure what source you might like but the american medical association has information both positive and negative.
  17. seezee
    SasaMinks, Congratulations on your wedding! I really hope the caterers are better than the ones we had. I live in Massachusetts where everyone who serves food has to be trained in food allergy awareness. So, I think we are spoiled so when I say gluten free here folks know what to do (usually - not always) or at least there are lots of restaurants that have...
  18. seezee
    FYI there was a recent dept. of justice decision around this issue. The summary is here: Open Original Shared Link The result is that celiac and other chronic illnesses are covered by ADA and your school needs to make accomodations. The Justice Department today announced an agreement with Lesley University in Cambridge, Mass., to ensure that students...
  19. seezee
    We recently (yesterday) returned from my cousin's wedding. My daughter and parents went to the rehearsal dinner at a restaurant where my poor daughter (14.5) somehow got gluten from her gluten free meal which wasn't cheap. The waitstaff told my mom it was gluten free but my daughter said that it didn't really seem that they knew what it meant and seemed impatient...
  20. seezee
    This sounds like something to check with the doctor. My daughter is 14 and taking iron for low iron and they asked us to call if any symptoms like you describe. I think there are multiple forms of iron supplement. It could be an issue with sulfur if it's ferrous sulfate for example.
  21. seezee
    I find similar issues with gluten free. Many people relate tales of so and so who says they're gluten free but eat regular pizza or that it's the latest fad. I am not sure other food issues are so mocked or trivialized.
  22. seezee
    Hi -- I found the full DOJ settlement for Lesely Unive. Your child has the right to choose any college and they are required by law to accomodate the dietary restrictions. I read a couple of news stories but didn't realize how wide the decision goes until I read the brief. A recent settlement agreement between the United States Department of Justice ...
  23. seezee
    If you google celiac 504 you should get some pretty good examples of answers for these questions. Also, try any of the websites of the celiac centers like Childrens Hospital Boston for advice about school. Open Original Shared Link this page has a school packet that is really helpful. Open Original Shared Link this is what usually I put. ...
  24. seezee
    Hi -- My 14 year old daughter was diagnosed with celiac at age 9. At her recent check up we had concerns about very heavy periods and tests revealed iron deficiency. Her celiac panel is negative which probably means she's doing a good job with the diet. She's very strict about it. The regular peditrician says this is a usual adolescent issue. Any advice or...
  25. seezee
    We've gotten gluten free meals on travel to and from Europe. They tend to be bland like a rice cake and a piece of fruit or plain chicken and rice and salad. They come in sealed packages specially marked with our names. We've also ordered some of the snack boxes and skipped the crackers. They usually have something like a piece of cheese, a little can of...
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