Hi! My child doesnt have this, but one of my good friends in high school had it. I remember she had her own bread that she could eat. Pizza hut even let her bring her own pizza dough in a pan and they would top it for her! Everytime she ate over at my house, my mom never knew what to make so she always made hot dogs LOL. My friend did really good with it though and Im sure nowadays they have tons of things she can eat like pastas, bread, etc etc at health food stores, I would check those out and you could maybe make it like "this is YOUR special bread!" or something like that. Good luck!!!
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Glutten free is the key. I think Hy Vee has one of the better aisles (more things there) for a glutten free diet. Your daughter will have to watch that she doesn't even eat the breading on chicken nuggets for fish sticks.
Since Celiac is mainly an hereditary disease you may want to find out if one of parents carries it.
My BIL has this and wasn't diagnosed until he was in his 20s. It was a really hard change for him, so I am sure it will be for a 9 year old who doesn't quite understand the ramifications of it. Companies are coming out with more products to try and keep some of the food semi-normal. I know at HyVee, they have gluten free cookies. My MIL found a whole foods store I believe and they had a bunch of items there to replace the normal things such as flour and so on. I wish you the best of luck!
Listen to your heart, it whispers softly so listen closely.
I can't be positive, but you may want to try contacting Sioux Falls Parent Connection. They have a lot of resources available and there are a lot of people who aren't aware of them. I had a friend that use to work there and it is amazing the services that they can get you in touch with! My 6 year old nephew who is also diabetic, was just diagnosed with Celiac disease this week, so when I saw this link I pulled it up right away!
Good Luck!!!
My dad was diagnosed with this right before Christmas, and he's almost 60, so he's had to totally change a lifetime of eating habits. Hv-Vee has a ton of gluten-free items, including cereals geared towards children, cakes, cookies, pizza crusts, breads, etc. A great resource is the book "Living Gluten Free for Dummies", I think it's called. I bought it for my dad and it's really easy to understand and it even has some recipes in there. And a lot of it talks about helping a child adjust to the change. I highly recommend it. Also Papa Murphy's will top a pizza crust for her, too. Good luck and take it one day at a time!
My best friend has celiac disease and althought she was diagnosed as an adult and I can't help you with support groups, I just wanted to let you know that there are so many options out there for her as far as food goes now.
If you talk to the Hyvee nutritionist, you can get a printout of all the foods in the store that are gluten-free-not just the ones in the Health Market. Same thing for Whole Foods and some of the other health food stores. Most labels are clearly marked "Gluten-free" which is really nice for you when shopping. I know there are tons of online groups with great resources where you can find out what restaurats are celiac friendly as well as which items on the menu are safe for her. As long as she learns what she can and can't safely eat, it shouldn't be a huge barrier in her life! Best of luck finding a group!
Katy-mom to Jacob and Abigail, wife to Joseph (moving to Sioux Falls in June)
Independent Scentsy Consultant-www.BeWickFree.com
HI! My daughter is 15 with Downs and was diagnosed in August of 07 with celiac. I can try to answer any questions you might have.You don't only have to watch for foods that might contain gluten. You have to watch for lotions, make up, soaps, glue, etc. If you have any questions feel free to email me directly.
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My daughter was diagnosed with Celiac disease a couple of weeks ago. She hadn't been sick at all. She had about 3 instances of stomach pain in a 2 week period, so brought her in to see if it was her appendix. 10 days later, the doctor calls and said that she has celiac disease. She had the biopsy done and it was confirmed. I am completely overwhelmed and I know that she is too. I bought all the books and have been doing research non-stop. Is there anyone else out there with children who have this disease? I have been trying to find a CHILDREN'S support group around here and have only found adult ones. Would just like to talk to another mom that is dealing with this. My daughter is 9 and is really fighting the change. PLEASE HELP!!!