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About kbdy

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  1. We found that book at the library & it was great! My dd brought it to her preschool & they had a great time reading about it & discussing it. It really helped the kids understand what dd has & why.

    Not sure how old your child is, but we brought gluten-free food boxes for her preschools "grocery store" & it was fun for dd to have to shop for gluten-free foods at school :)


  2. Vicky,

    Thank you for that well thought out response. I honestly didn't even think about the cross contamination issue! And all those toys that they will be playing with later.

    I think that I am more than fair with what dd deals with. She is not able to participate in many areas in that room. They will have a bin of flour or oatmeal out in the room for the kids to "measure" with. Until reading this post, I had not even considered the danger to dd. How dumb am I?? sheesh.

    Just to clarify... I was not requesting that the entire feast be gluten free. I was asking to bring in fruit cups in addition to the cereal feast. I am not trying to change their lesson plan, only asking if I could add to it.

    I have placed a call & someone from the school called to tell me that the teacher would speak w/me in the morning. She said there must've been a misunderstanding & dd was more than welcome to bring in the additional fruit cups for the class to share.

    The only reason I did get a call today was b/c I have a friend at the same school whose son has a life threatening allergy. She approached them as well to ask what was happening & if she should be concerned for her son b/c she thought it was handled poorly & didn't want to have to worry about what was being served to her son.

    I never asked my friend to approach them, but after hearing my story, she was concerned as well. I'll have to see what tomorrow brings. Right now it's sounding like a lot of backpedaling is going on. sigh.

  3. Do you happen to know if there's a group in NW IL? I've tried contacting R.O.C.K. in Rockford, but I don't know if they still exist b/c I can't get in touch with anyone.


    I'm very excited to share that this summer our family decided to form a support group for kids with Celiac in Central Illinois. The website (our primary means to reach out to others) took longer than we anticipated, but it is finally done! If you have a child with Celiac, gluten intolerance, or you avoid gluten for other reasons, please visit the Heart Of Illinois Celiac Kids site at: HOICeliacKids.com.

    Once we have more than...um...one family in our group, we'll start planning events for the kids. It is our hope to offer Celiac kids of all ages with an opportunity to meet other Celiacs, to enjoy gluten free social events and to celebrate healthier, happier futures! It is also our mission to help newly diagnosed parents in those difficult beginning months.


  4. Since the holidays coming up there are lots of festivities in school that involve food. Many of these things she obviously cannot have.

    So for T-day her class is having a cereal mixture for their festival. They are going to share in the mixing & passing out to each of their classmates & then eat their created feast.

    I asked the teacher if it's possible for me to bring in a fruit salad for the class as well so that dd could participate in the "sharing & eating" of the feast. I was told "No. She can either bring in her own cereal or she does not have to attend that day"

    Ummm, ok. So, I walked out pretty angry at the response for the teacher & sad for dd. I hate that she's not a part of things b/c of her food restriction. It breaks my heart that she can't participate the same way that other kids can.

    Am I overreacting here & just need to "put on my big girl panties" and deal with it? Is it the mama bear in me coming out? Or, maybe it's not that big of a deal that she either A) not participate or B) bring in her own cereal & not "share" with the others.

    If I'm not overreacting, how do I approach the preschool & tell them how upset I am by this? I am not a confrontational person by nature & I hate, hate, hate doing it. I've tried to be proactive, bringing in dd's snacks each day, buying items necessary for her to use in school (gluten-free play-doh, soap, gloves, etc.) But how do I do this w/o being accusatory & angry? I don't want dd to be singled out or treated differently b/c I'm the "crazy allergy" mom.

  5. Dh & I are so mad at ourselves. We had picked up what we thought was gluten-free pasta. It was in a case w/other gluten-free pasta, but it was next to regular pasta. Someone must've picked up a reg. & put it on the gluten-free side & we didn't even look at it.

    Poor dd was sooooo sick, my heart just ached for her. I wish it was me instead of her. It was a very hard lesson to learn. We got lax & she paid for it. She was throwing up for 5+ hours, she was miserable & so were we.

    Dumb, dumb, dumb.

    We didnt' tell her that she had gluten b/c she'd never trust any food again. She's almost 5 & very leary of any foods. :(

    PSA: always, always, always check & recheck labels!

  6. I picked up my girls from VBS this afternoon & on the way home ydd tells me that she's hungry b/c they lost her snack.

    I advised them of her having Celiac on the registration sheet, told both teachers & they said they understood the restrictions. I told them that I would bring her a snack each day so they didn't have to worry about it.

    Well, today they misplaced her snack & then told her to eat their snack of pudding & cookies!!. Ydd said that she can't have that & the volunteers kept pushing her to eat it. Ydd said "mom, they kept telling me to at least take a bite, they wouldn't listen to me!" She was so sad.

    Thank goodness dd knows what she can & can't have. I called the director as soon as I heard & the director tells me that it must've been a mistake. *Yeah, no kidding!* I told her that we can't have that kind of mistake b/c dd will get very sick. She kept repeating it was an honest mistake & tomorrow they'll make sure she has pretzels. HELLLLLOOOOO. She can't have those either!!

    She also tells me that they had her playing in oatmeal & with play-doh. She knows that she can't use the play-doh, but didn't know that the "mud-pies" were made with oatmeal. UGH.

    WWYD at this point? I'm planning on going in early tomorrow to explain again & I've made a button for her to wear that says "do NOT feed me, I have allergies"

  7. My dd (3.5) was dx'd about 5mths ago & has started preschool. They have snack each time & dd brings her own gluten-free snack. At first she was doing ok w/this, until another child had a birthday & brought in treats that she couldn't have.

    I do have a stash at the school of treats she can have if there is a birthday, so she did get a treat, but not the pink frosted sugar cookie that was oh so tempting.

    The school is working with me about informing me of celebrations prior to the day they happen, so I can try to help dd understand. But, right now she comes home crying every day b/c she wants to have the same things the other kids do.

    How do I help her cope w/this? I've told her that maybe the other kids wish they could have a special snack like she does, but she just wants those darn teddy grahams or whatever gluten they are having :(

  8. Thank you all for the responses. I never thought that it might be associated w/pain :( And yes she's been gluten-free for about 2wks now.

    My kids are going on vacation w/my parents this weekend & it's gonna be tough b/c they don't have a kitchen where they're staying. Hopefully they will fully follow the gluten-free diet or dd is gonna be sick & no one will have fun.

    I'll have to try the pasta suggested, shapes do make a difference, lol. And some of the other suggestions. She's not much of a dipper. She likes everything plain, no butter, no sauces, no condiments... dipping is not something she likes, lol.

    The ped said that she'll start eating again when she's hungry. So hopefully she'll get hungry soon!

  9. Have you checked with your pediatrician???? what does he say???? Is she losing lots of weight????

    My youngest sister(WE're 20 yrs apart) went for 3wks when shw was 2 1/2 eating only cheerios! We gave her pediasure with it and she as fine......WE monitored her weght and then one day she snapped out of it and wanted a cheese burger.

    I have a call into them to see what they say, but they're not too familiar w/celiac either :(

    I weighed her this am & she seems to only be down about 1lb so about 26lbs. I'm hoping that one day she'll just be hungry & eat. I'm sure there's a period of adjustment to this diet. I just feel bad that she won't eat.

  10. We've tried all kinds of things with her, but she just doesn't want to eat. Unless you count Cheetos & Trix.

    I've made the Pamela's bread mix, tried crackers, pretzels, mac & cheese, pasta, pizza, (al gluten-free) she won't touch meat.. any kind of meat. Refusing cheese & milk.

    What do I do now? I know that the texture is different & a bit of the taste is also, but she's got to eat something.

    Right now she'll eat a bowl of cereal in the am, a few pretzels for a snack, maybe a bite of yogurt for lunch & then that's it. She's 3 & this can't possibly be healthy for her. This has been going on for almost 2wks now.

    Please, any suggestions would be sooo appreciated!

  11. I'm sorry you had a bad experience with the nutritionist. Unfortunately, it is too often of an occurrence.

    If I can offer some advice, you should buy the book "Gluten Free for Dummies" by Donna Korn. It is the best literature out there for newbies and new parents to Celiac. You can buy it on www.amazon .com

    Also, you might want to go to Clan Thompson's site and download her gluten free list she has compiled.

    If you have any questions, direct them to us!

    We have all been there and we can help!



    Thank you all for the extra info. Sounds like I have a lot of learning to do in a very short amount of time. I appreciate all the help :)

  12. I had posted yesterday on the kids/babies board about seeing a nutritionist, what a joke! I'm glad that some had responded about things to ask her...

    She gave me NO meal/dietary plan... told me to get dd to eat whatever she wanted that was gluten-free just to get her weight up (cheetos, pb, any snack that had fat) & then to worry about healthy things later WHAT??!!

    She said as long as we read labels, things will be ok. Gave us a bunch of printed stuff off the internet, no book recommendations or internet sites. AND told me that there are no lotions or body products that have gluten in it. I even asked her about Play-doh & she said "It's fine, Play-doh is gluten free"

    Great, thanks for all the misinformation. Now I can go & get her sick. UGH.

    Dd is 3.5 & is 27lbs & 36", so she is on the small side. I really need someone that has a clue & can help us. I'm just so angry about this. I have a call into the pediatrician to find someone that has a clue about how to feed my child a HEALTHY diet. sigh.

    She also told us that dd's intestines will be back to normal w/in 3-6mths? True??

  13. Thank you for all of your advice. I hope that she knows what she's talking about, but I'm not certain yet.

    When I called she asked why we needed a nutritionist for a 3yr old, I said b/c of Celiac. She said, "well, does she have diabetes?" Ummm, no. :rolleyes:

    Sooo, we'll have to see. Right now I have HMO to thank for this referral b/c they wouldn't let me go to the one that our ped GI recommended :angry:

    I'll take notes & report back so you all can help! I'm so happy to have found this forum!!


    Ask her how many patients she sees with Celiac. Ask her what conferences she has attended to keep up on food labeling laws and Celiac. Ask where you can find good gluten free products in your area. Ask if she has any books or magazines she would recommend.

    All of these would give me an idea of how much she truly knows about Celiac. There are many great nutritionists out there, but many of them have outdated and incorrect information on Celiac. So its important to know her level of experience with Celiac.

    (Mine told me not to eat certain green veggies. Seriously. Turns out the whole time, she was talking to me about Crohn's. I kept correcting her...and I had know about Celiac for all of three weeks!)

    kbdy: Welcome to the board. I'm happy you found this site. If you have questions, please feel free to post. This board has wonderfully experienced members! Best of luck.