• Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


Advanced Members
  • Content count

  • Joined

  • Last visited

Community Reputation

2 Neutral

About ryo

  • Rank
    Community Member
  1. 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 you talk with your doctor directly? nurses are great but do not always have all the information. that fact that you are seeing weight gain is great! i try to tell myself to always look at the whole picture. if she is feeling better, growing, and you are checking foods you are going in the right direction. give yourself sometime.
  2. 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 the placemats are great idea in your sons class but i would actually send him his own each day so it is clean. if this is not an option i would store his in a separate location. kids are messy during lunch and crumbs are flying i understand not wanting to have him stand out. it is so hard, right?? but maybe with a little help from his teachers is can all be very behind the scenes. good luck!
  3. 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 i never have to wonder or question if it is Celiac. at the start i thought the blood test were enough but as time passed i am very thankful we went through the few months of pain to get her 100% tested. it is lifelong and i don't want a single person to doubt how serious her condition it (especially her). my daughter still hates blood work more then anything in the world. she screams and i have to hold her down. it is not fun but part of life and thankfully it goes quickly. sending you lots of strength and you decide the right path for your family.
  4. 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 it. it sounds like you are getting towards the end of the testing and can soon move into healing your son. i used the time to clean out our kitchen, learn new gluten-free products, and research what i was going to need to deal with in her school. it helped me to stay busy and moving towards making her life better once the test came back. if you trust in your doctors then remind yourself you are doing the right thing for your son and he will soon be feeling so much better. good luck and i hope you start to see growth (and all types) changes soon!
  5. 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 it harder for companies to offer us gluten-free options but at least we will be able to trust the label more.
  6. 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 retesting this time and we decided to wait to look into that at this point. what i am having a hard time accepting is that she was doing so great for 5 months then all of the sudden it went down hill again (and quickly). her growth has been very slow so that could be enough of an indication that something over then celiac is going on. at this point so hard to know! really looking forward to the blood test coming back next week so we can start to sort through the info. yes, allergy testing is a crazy road to go down. my doctor spent a bunch of time talking about how inaccurate the testing can be and how you really have to dig much deeper to evaluate if you are having a food allergy. i guess it is like all the rest of this… testing, playing with food, waiting i am hoping it is not a another food allergy but we need to keep our eyes open for all possibilities.
  7. 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 to see more growth by now. do i just need to chill? would love to hear your experiences. did you kids start to grow right away? after 6 months? after 1 year?
  8. 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 right now it was a hard fact to hear. we have gone through everything in our kitchen and evaluated all sources of contamination. right now the only thing we can really see as any option is her vitamins. please know i am not saying this is the cause of her getting gluten it just the only place we can really see room for error. the brand she takes recently changed labels. with this label change they removed "gluten free". i called the company when the change happened and they assured me they were still gluten free and it was just a design change. i bought it at the time (about three weeks ago). but the last few days i went back to them and did some more research. it turns out it was a change to how they are made but they still insist they are gluten free. what doesn't sit well with us is why in the world would you remove gluten free from a kids vitamin based on design. it seems fishy and that is enough of a reason for us to stop using them. again i am not saying with any proof that this is the cause but it's all i can really try eliminating right now. today we tested for food allergies, vit. d, iron levels, along with the other test she already had planned for next month. now we wait and do our very best to get her back on track. thank you again for all your thoughts! very, very helpful.
  9. 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. 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 so mad when we had to put her back on gluten but one doctor pointed out that she had stopped eating right after her blood work was done. if we had kept feeding her gluten at that point she would have gotten much sicker. her body needed the quick break before it tolerated the one serving of gluten a day for 6 weeks. we also have some abnormalities in her blood work that we still don't know if it is related to Celiac. The first step was the biopsy and official Celiac diagnoses. we go back to the dr in a few weeks for her 6 month checkup. fingers are crossed these other issues have resolved themselves. i am not sure why i shared so much but wanted you to know you are not alone one step at a time and keep trusting yourself. bug hugs for you and your little girl!
  11. 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. 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 my best moment!). for the last few weeks she has been showing symptoms again. she is not eating, super moody/emotional, red rings around her eyes, always sleepy. the symptoms are not as strong as they were before she was gluten-free or the same as the two times that we know she got glutened. i can not figure out anything that is causing the issues and honestly i don't know if i am just going crazy we are set to go back for her 6 month check-up towards the end of feb. and i am wondering if i should try to have her seen sooner. my question for all of you is... did you ever see the issues return and not be able to pin point the issue? do you think maybe she is having reactions to another food? thank you for any insight you may have!
  13. 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. 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 a new tray for my daughter but i feel much better about it now.
  15. 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!