Celiac Disease
westcoaststyle
member
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.
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!
This. except I've never heard of ROCK.
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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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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.
Kristen (7), Timothy (5), Robert (3), Charles (9 months)
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!
~Benjamin Franklin
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!