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Celiac Disease

Hello-

I've been lurking over here for the past few weeks as we've tried to figure out what is "wrong" with our 2-year old DS.  He's been getting frighteningly skinny, extremely picky when it comes to eating, and very lethargic over the past 2 weeks.  Many people told us that's just what 2-year olds do (minus the lethargy), but when he started being sleepy all the time, I really started to get nervous.  They ran some blood tests a week ago and the results finally came back showing that he tested positive for Celiac Disease.

He has to have an endoscopy on Tuesday to confirm the bloodwork, and we plan to start our gluten-free lives on Wednesday.  I can't wait!  I just want him to be "himself" again.

I guess I'm just writing to introduce myself and to see if any of you moms are raising kids with Celiac Disease and if you have any tips, advice, website  or book reccomendations-- if you do, please let me know!  I'd really appreciate it.  Also, if any of you are questioning your own child's weight loss, behavior changes, etc and you think it might be Celiac, I'm happy to answer any questions.  

Good luck to all of us.  And, I'm so happy to have found this board.

Cy (04.02.2008) & June (10.05.2010) 

Re: Celiac Disease

  • I'm not a kid, but I do have Celiac.  I HIGHLY recommend looking into ROCK (Raising our Celiac Kids) and seeing if there is a group on your area! 

     good luck!

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  • image ISU2005bride:

    I'm not a kid, but I do have Celiac.  I HIGHLY recommend looking into ROCK (Raising our Celiac Kids) and seeing if there is a group on your area! 

     good luck!

    This. except I've never heard of ROCK. 

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  • i'm still BFing and my LO is sensitive to wheat/gluten.  i'm hoping he'll grow out of it, but i've been eating gluten free for 4 months.  i'd love some tips! 
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  • Posting from my phone so no paragraphs. Sorry! My DS is allergic to wheat so he has been on a wheat free/gluten free diet for the past 5 months when we discovered the allergy. There are a few toddler GF/WF recipes on my blog (click on 'recipes for baby' from the top bar). We gave had great success finding food for him at Sprouts, Whole Foods and a local grocery store chain. He loves Van's frozen waffles, Gorilla Munch cereal, Glutino pretzels and berry cereal bars (can't remember the brand off the top of my head). If you have any questions about food please feel free to email me at themagicofmama at gmail dot com. I'd be mire than happy to tell you what we keep in the pantry for him!
  • My DS has a wheat allergy.  I loved "The Kid-Friendly ADHD & Autism Cookbook" by Pamela J. Compart MD and Dana Laake.  It has a great chart of all the "bad" food items and the cookbook is great.  Also a lot of resturants are now serving Gluten free items.  I believe that Chick-fil-A and Burger King even have gluten free french fries.  (but check to make sure! :))  We buy a lot of items at Whole Foods Markets but recently found a certain Walmart in my area that has a great gluten free section on the baking isle.  I have found pretzels, crackers, cookies, mac & cheese, pastas, and chips.  If you would like the brands of some of the things that we eat, just let me know and I can email them to you.  Good Luck!

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  • My children don't have celiac disease, but I do. I highly recommend you go to celiac.com and sign up for the message board there. They have a forum dedicated to parents of kids with celiac that focusing specifically on kid related issues, but the entire board is a huge help when figuring out products and restaurants are safe for gluten free.

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    Kristen (7), Timothy (5), Robert (3), Charles (9 months)


  • Let me give you some product recommendations too.

    Udi's Bread: The loaf is tiny and costs a lot, but this is true for all gluten free bread. It tastes better than any other brand or anything homemade that I've tried. It's pretty darn close to tasting like real white bread. It also comes in a whole grain which is also good.

    Gluten Free Pantry Sandwich Bread mix: The best mix. It's good, it makes a bigger loaf than Udi's. It costs about the same as Udi's so I usually just buy the Udi's since it saves the hassle of making it.

    Trader Joe's Brown Rice Pasta: You can spend a lot more and buy Tinkyada, but I honestly think the Trader Joe's pasta has a slightly better texture plus it's only $1.99 a pound. That's a steal in the world of gluten free pasta.

    Pamela's Baking Mix: Makes great pancakes

    Pamela's cookies: If you want to buy store bought cookies as treats, the Pamela's brand taste good. The Glutino brand is pretty good too.

    There are tons of regular items in the grocery store that are gluten free as well. Kix cereal, Chex cereal, Fruity and Cocoa Pebbles. The list goes on and on, but it takes awhile early on to learn which products are safe and which aren't. The first time I went grocery shopping after my diagnosis I ended up sitting down in the aisle and crying. I left with a package of corn tortillas and a can of black beans.

     

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    Kristen (7), Timothy (5), Robert (3), Charles (9 months)


  • I do not have a child with celiac's but my mom has celiac (along with a whole host of other problems) and we find a LOT of foods that are gluten free (mixes for things, pre-made food, frozen dinners, snackies, etc) at Kroger.  They have a good selection for a chain grocery store, you just have to look in the health foods/organic section.  We have also had success at our Health Food Unlimited and Trader Joes.  She also likes chex as a cereal since it is gluten free and not as expensive as some of the other items.
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  • A friend just told me about this post.  My 18 month old was diagnosed just a couple weeks ago.  Like yours, he was lethargic, losing a lot of weight, etc.  It ws probably about 4 - 5 weeks of a really rough go.

    But once we got the diagnosis, we took him off gluten and I started seeing a change.  He did go into the hospital a week later for malnourishment, but it was really for the better - that was about 3 weeks ago, and today, he is doing great.  So, so, so great.  I have my little boy back and he's just a spitfire now. 

    Good luck and know that he'll be himself soon!

    "Beer is living proof that God loves us and wants us to be happy."
    ~Benjamin Franklin

    Lilypie Third Birthday tickers
    DS dx with celiac disease 5/28/10

  • 2 of my daughters have celiac disease (and I do too). I have some info in my bio.  I'm usually over on parenting if you need someone to talk to!  :)

    It is crazy overwhelming at first but I can promise you that it gets a lot easier in time. 

    .
  • Thank you ALL!

    I know I'm late in thanking you, but things have been crazy the last week as we try to clear out our house of all gluten and deal with extra dr's appts.  The best thing so far has been seeing how well DS is responding to his new gluten-free diet.  He was honestly a different kid after just 1 day.  He's still ridiculously skinny, but he has energy again, he enjoys eating, he tries new foods, he is so much more active, he's laughing!

    I will check out all your suggestions and may PM a few of you, if that's ok.

    Thanks again! 

    Cy (04.02.2008) & June (10.05.2010) 
  • I have celiac Disease too. Did you introduce gluten into your children's diet before the age of 3? i have heard that if you postpone introducing gluten into your children's diet it will help thier immune system. Do your kids see  to have any difficulties wiht gluten?
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