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#1 Faith's Mommy

 
Faith's Mommy

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Posted 02 March 2004 - 10:44 AM

Hello everyone,

My name is Misty and I wanted to introduce myself. I was diagnosed with celiac disease at age 2, although my mother was told I would "outgrow" it. Well, they reintroduced gluten in my diet around age 5 and I seemed fine. I have been fine since then, I am now 29 years old. Now I learn that I still "have" celiac disease although I have NO symptoms, no complications, nothing.

I have a 12 year old daughter who seems symptom free but I also have a 21 month old who I just KNEW had Celiac's. She has a distended belly, she's EXTREMELY gasy and her stools are VERY strong smelling. I mentioned it to the doctor, she thought there was no reason to test her but agreed just to aleviate my fears (we have also lost a son to SIDS when he was 4 months old so my doctor is quite understanding). She ordered a Celiac Panel for Faith. 3 of the 4 results were negative but one came back with a "weak positive". She felt there was no need for worry because the other results were negative but I wasn't satisfied with that. I orderd the stool testing through Enterolab. I received the results this morning and she tested positive for gluten sensitivity.

Now I am reaching out for any help I can get. I'm struggling, depressed, sad for her and just very emotional right now. I am also 38.5 weeks pregnant so I'm feeling a full range of things right now. Worried about the baby, worried about SIDS, worried about Faith.... UGH, it's all so overwhelming.

I have ordered Danna Korn's book this morning and I'm looking for any other information I can find. I have no clue where to start. There are so many things that Faith just LOVES that it looks like she can't have anymore, i.e., ketchup, mustard, ice cream, Cheerios..... how do I explain to this 21 month old that she can't have those things anymore?

Thanks for listening.
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#2 Guest_jhmom_*

 
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Posted 02 March 2004 - 11:08 AM

Hi Misty, welcome to the board!

I understand how you must feel right now it may seem overwhelming but it will get better. I am sure you are just happy to finally know what is wrong with your little one. After she is on a gluten-free diet she will not live in pain anymore, that is a very comforting thought! You mentioned you were diagnosed as a child are you currently gluten-free too?

She can still enjoy mustard and ketchup, Heinz and French's are both gluten-free. As far as the Cheerios, maybe you can find another gluten-free cereal for her that she will like. I like Rice Crunch-Ems.

Here are some links that have been very helpful to me:

Mainstream gluten-free Products

Support Groups

What it's like to have celiac disease

http://www.kinnikinnick.com/

I hope this has helped you and hang in there :D
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#3 Faith's Mommy

 
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Posted 02 March 2004 - 11:36 AM

Thanks for the reply Stacie. I didn't know about Heinz and French's. See, I'm learning already.... :)

No I am not on a gluten-free diet. I haven't had any problems since age 5 and my mother always told me I outgrew it. I didn't realize that is supposedly not the case until I started suspected that Faith had it and I was researching. I just learned that I must still have it even though I have NO complications whatsoever. Strange that I can have this and be symptom free, especially for 25 years so far.

I will check out the sites you sent me. Thank you so much. I want to learn all I can and help my daughter adjust to this.
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