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LFitts

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About LFitts

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  1. That sounds soo familiar. My recently diagnosed 9 year old had those exact symptoms as a baby - green stools and all. She has been sickly off and on eating a high gluten diet her whole life. When we finally realized that IBS medicines weren't helping, reflux medicines weren't helping, and her level of discomfort / frequency of painful / horrible stomach cramps was increasing, we took her to a pediatric GI doc. After endoscopy - upper and lower - with about 30 biopsies of all of the lesions / ulcers, they were fairly certain that she had celiac. This was confirmed with the antibody test. My insurance co would not pay for the antibody tests without have the endoscopy first, even though the newest Journal of New England Medicine (Dec.2012) has an article recommending the antibody test as a first step.

    I wish we had known and had a diagnosis when she was younger. I think it's hard to take the gluten-free option seriously and make a real commitment to it without a diagnosis. I do think it's worth the trouble and cost to get the diagnosis, just so you will know if that's the cause or they may find something different.


  2. We are still quite new to this -- my daughter was diagnosed about a month ago with celiac and she has been gluten free for about 4 weeks. Sunday we ate at someone's house and by late afternoon she was feeling horrible, even though the cook was trying to be careful not to cross-contaminate foods. Then again yesterday evening, so I'm thinking that a candy cane she ate at school was the culprit yesterday.

    Her symptoms seem to start with her rash itching, then feeling crummy, then stomach aches / cramping. She has a lot of intestinal damage that the doctor said may take up to a year to heal.

    I hate these mysterious attacks when you can't pinpoint the culprit.


  3. Welcome to our community, Mom! I am glad she finally was diagnosed and is healing. Did you know that your other children should be tested for celiac, too? And at least every three years after, unless you have the genetic test for them and they do not carry the same genes. And you and your husband should also be tested although I note you are going gluten free with her. Is this because you suspect you have issues too, or just in sympathy?

    Yes, the whole foods route is the best one to take, both for help and to ease the pocketbook. It is hard for a young 'un to watch other kids eating the stuff she wishes she could have. Have you set up a treat stash at school for her so that she does not feel left out on birthdays and other treat times?

    I asked the doctor about having the other girls tested and she said that it may not be worth the cost. Her recommendation was to switch them to gluten free if we suspect celiac or start to notice symptoms OR just do the genetic test. I've got to check with my insurance and see if they would cover that for them. I am just joining her in going gluten free out of sympathy for her and because I want her to see that it's no big deal and easy to adapt to.

    I love the idea of setting up a stash of treats - especially at school. Yesterday was her first day back to school and she got accidentally glutened somehow. About 3:30 in the afternoon her DH rash started itching, then feeling groggy, then stomach cramping / pains. I don't know what the exposure was from, but a girl in her class gave her a candy cane and she ate it. We don't know if it was safe, so I suspect that it wasn't. We talked about it and she knows not to take ANYTHING from anyone unless she can read the label and make sure that it's okay for her.


  4. I have three daughters - ages 5, 9, and 12 - and the middle one was diagnosed with celiac about 4 weeks ago. We are still learning a lot about what it all means and what is best for her, but we live in a very rural area with no access to specialty stores. So far, I haven't had to deal with very many fairness issues (no birthday parties, etc). We have spent our time during the holidays educating family members and making sure that there are plenty of good things for her to eat. The only fairness problem we had was the day after we started gluten-free, at my grandmother's house there were Pringles, Twix, and Kit Kats that the other two girls were eating and 9 year old got sad. We both cried and we have since replaced all of those snacks with things that all three girls can have. Favorites are the Wow brand snickerdoodle cookies and fruit.

    I have decided that I will be gluten-free with her, and I have replaced many items in our pantry with gluten-free ones for everyone. Our diet is already quite heavy on fruits, veggies, meats, and cheese, so we haven't really had to make many modifications.

    With just a few weeks of being gluten-free we have seen lots of great changes in how she feels and her fingernails are growing out for the first time ever! She was previously diagnosed with IBS, reflux, eczema (which turned out to be DH) and has always been pale, anemic, with brittle hair & nails, and lots of tummy aches. She was diagnosed after upper and lower GI scope, complete blood panel, and the antibody and genetic tests -- she had all the possible positive indicators for celiac. We are so happy to finally have a diagnosis that explains everything and a plan for getting / staying healthy. I am just sorry that it took us 9 years to figure it out.

    Sorry for the long post, I'm just happy to find a forum with other people going through this!


  5. The snow is coming down and I am thinking of summer. Has anyone had good luck with a regular sleep away camp in New England? Can you tell me about it? I know some you have to sign up for months in advance. We did try camp celiac but although my daughter liked it she isn't that interested in returning there.

    Thanks very much,

    Sarah

    I am wondering the same thing -- mostly for the southeast US. I found this list http://www.celiaccentral.org/kids/gluten-free-camps/list/

    We are new to this. I have three daughters and the middle one - age 9 - was recently diagnosed after a lifetime of being sickly. She is not likely to want to be away from home for camp, but I am checking them out. I was very happy to find that Camp Celiac has its menu posted! The menu gave us lots of new food ideas that sound great. We have been gluten-free now for about 3 weeks and loving it.