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ryo

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

Everything posted by ryo

  1. ryo
    it can take time. at 6 months one of our doctors told us that we must still be feeding her gluten. devastating to hear! after talking with our GI doctor we felt much better. she said it can take a full year to really see a change in the numbers. at 1 year my daughters levels are almost back to "normal" and they were over 100 when diagnosed. can...
  2. ryo
    i would not allow my daughter to use any products with gluten. i meet with her teachers each year and go over the planned projects. we eliminate or substitute any projects that wouldn't be safe. my daughter eats on a carpet square at school and we got her own sq (it is slightly bigger then the others) and stored in a separate place. it sounds like...
  3. ryo
    i felt the same way. in the end i am so glad we did the testing. my daughter (6 years old) is amazing at keeping herself safe and staying away from gluten. her school has never questioned me and has been so supportive. our home is 100% gluten free and not one single person in our family questions her condition. i truly believe that all of this is because...
  4. ryo
    the wait is so hard! we stopped feeing our daughter gluten right after the blood test (we didn't know better and were told to by our doctor). it took a few weeks to get into the GI Dr. and then we had to feed her gluten for a month before final testing. i thought i was going to fall apart every time we gave her gluten but i am SO glad we pushed through...
  5. ryo
    i am thrilled about this... "Many companies are taking the "gluten free" label off things because of the new government standard they are implementing. Companies aren't suppose to make the claim if they can't back it up even if there are no gluten ingredients in it." if they can't back it up i don't want to feed it to my daughter! i know it will make...
  6. ryo
    the test strips are a great idea! at this point i would love to have the help identifying if we have a gluten issue. we are working closely with an endocrinologist. when this all started she also had a low hormone level that was cause for further investigation. at the same time her thyroid was tested and it appears to be in good shape. i asked about...
  7. ryo
    i need to try to put my mind at ease. our daughter is 5.5 years old and 6 months into her diagnoses. the reason we found out she has celiac was because she didn't grow for about a year. as of today she has gained 1 pound and grown 1 inch in 6 months. we have seen so many physical and mental changes in her since going gluten-free but i honestly expected...
  8. ryo
    thank you all for your thoughts. i did call her GI doctor a few days ago. today we had all of her blood work done and are now waiting results. over the past 6 months she has gained 1 pound and grown 1 inch. based on the growth chart she has actually fallen further off her curve. i know i need to keep this all in perspective but with the way she feels...
  9. ryo
    our daughter had a really hard time going to sleep after she went gluten-free. it was so crazy to see but she would stay up super late (in her bed) and pop out of bed bright and early. before she was gluten-free she could sleep in until 10-11am. it lasted for about a month or so then it balanced out nicely. good luck!
  10. ryo
    sending you some positive thoughts. my daughter was diagnosed in august of this year and i was so nervous going into the scope. she is 5 so was able to understand a little of what was going to happen to her. it was over really quickly and within a few hours she felt great. we also were advised to take her off gluten before we went to the GI dr. I was...
  11. ryo
    she is 5 years old and we have been trying to figure out if it is something else going on with her. it is the level of being worn out connected with the not eating that really has me worried. it could just be a normal development stage and it has gotten so hard for us to separate the two issues.
  12. ryo
    hi, my daughter was diagnosed with celiac in august. our home is 99% gluten-free (my husband still keeps some beer in the house) and for the first 5 months she did great. we had a few miss-steps where she was glutened and we were always able to pin point what had happened (eating out once, and another time i bought the wrong bread and gave it to her, not...
  13. ryo
    thanks so much for your tips and recipes! i am super new to gluten-free baking and i want to "wow" the class so they allow me to keep doing this for parties. i figure if the kids don't notice the cookies are gluten-free it will be a huge win! i am going to start experimenting this weekend and will let you know how it goes
  14. ryo
    thanks for the info and recipes! i made it for her class but am going to try the recipe that smilla posted next time. so far our teachers/school have been amazing at making changes for us. we replaced all the play dough, they stored all the wooden tools for the year, and washed everything else in the dishwasher. i still brought in a box of tools and...
  15. ryo
    i am looking for your very best sugar cookie recipe! i would like to provide the undecorated cookies to my daughters class in order to avoid having to keep her home from school that day thanks in advance!
  16. ryo
    thank you for all your input! your feedback was very thoughtful and will help me as i approach the teacher (and the amazingly thoughtful parent) with this topic. i am always the person that will suffer in someway instead of make someone else feel bad. i am learning how to tackle these issues with class i haven't looked into doing a 504 plan and i...
  17. ryo
    i would love to hear some thoughts on how you handle the kindness of other people when preparing food. my daughter just started kindergarten and we are getting use the possible contamination sources. this week was the first (of so many) birthday parties. i was able to find out what the snack was going to be and make a gluten-free version for her. when...
  18. ryo
    thank you for all of your feedback. nvsmom: the lab didn't actually list a "normal" for the Immunoglobulin A but I assumed that the Endomysial Antibody IgA Negative was related to that? bellev: thank you for your kind words. my daughter is really young and we want to support her however we can while also letting her grow up understanding...
  19. ryo
    hi, my daughter has been diagnosed with celiac (blood test and biopsy). we are now having our family tested. i went through directlabs and just got my results back. i would love it if the experts in this group could take a peak and confirm that i am in the clear (as much as one can be). a little background... the only reason i was tested is because...
  20. ryo
    my daughter started kindergarten this morning and it sounds like they will be using play dough A LOT this year can anyone send me some thoughts on making vs. buying play dough for the classroom? and i would love your best recipe or online store for play dough. thanks!
  21. ryo
    i would love to hear any thoughts on online labs for having a celiac panel done. our daughter just had a biopsy today and we need to have the rest of our family tested soon. our son will be tested with his dr but my husband and i are not insured and would just like to have the blood test so we can get some information before our household is gluten-free...
  22. ryo
    i just wanted to thank you once again. we had the biopsy today and your advise was close to my heart the whole time. she HATED the mask (mostly the smell of the gas) and i had to hold her hands as they forced her to sleep. that killed me. but she slept for a bit and woke up a little upset by ok. by the time we got home she was mostly herself again! ...
  23. ryo
    thanks nvsmom! they look like a great solution.
  24. ryo
    thank you all so very much! it helps to hear about how things went for you and your kids. i feel more prepared for friday now. i am so ready to stop feeding her gluten and start helping her feel better!
  25. ryo
    my daughters biopsy is this friday and i am trying to remain calm. i know it is a simple procedure and many people deal with so much more but i keep getting myself worked up. it is really the anesthesia prat that has me thinking... can anyone tell me about the waking up process? i am hearing that kids wake up really upset and often angry. did you experience...
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