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Author Topic: Celiac experience?  (Read 1312 times)

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Offline KaelynsMom

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Celiac experience?
« on: October 09, 2015, 11:33:58 AM »
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  • Kaelyn had her yearly labs. She had e celiac blood test. One marker came back normal and the 2nd came back what the doctor described as "weakly normal". Normal is 9 and Kaelyn was 11. We will repeat in 3 months and if still high be referred to GI for testing. What are the chances of this brig nothing? I really don't want to have to deal with a 3rd AI issue.  :'(
    -Stephanie  Mom to Kaelyn, age 7 DX 10/31/10




    Offline SarahMay

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    Re: Celiac experience?
    « Reply #1 on: October 09, 2015, 09:25:03 PM »
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  • Following. Was told last year that Jonah "failed" his celiac labwork, but the retest was fine. The blood tests are notoriously inaccurate, so I'm curious to hear what others have to say.
    Sarah - wife to Aaron, mom to
    Matthew (9) non-D
    Jonah (8) DX 02/05/14 (Animas Ping, Dexcom)
    Isaiah (8) DX 01/10/13 (Animas Ping, Dexcom)
    Gideon (5) non-D


    Offline KaelynsMom

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    Re: Celiac experience?
    « Reply #2 on: October 10, 2015, 11:09:00 AM »
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  • Following. Was told last year that Jonah "failed" his celiac labwork, but the retest was fine. The blood tests are notoriously inaccurate, so I'm curious to hear what others have to say.

    Thank you for sharing, I'm happy to hear that we might retest and have everything fine.

    Hubby and I were talking and we don't think we want to put her through an endoscopy. Thinking if it is positive again just doing the gluten free thing and be done with it. I don't know what the right answer is.
    -Stephanie  Mom to Kaelyn, age 7 DX 10/31/10




    Offline oddangela

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    Re: Celiac experience?
    « Reply #3 on: October 10, 2015, 11:38:30 AM »
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  • Thank you for sharing, I'm happy to hear that we might retest and have everything fine.

    Hubby and I were talking and we don't think we want to put her through an endoscopy. Thinking if it is positive again just doing the gluten free thing and be done with it. I don't know what the right answer is.

    I have heard of some people who had issues without the definitive diagnosis.  I didn't follow closely enough to know but insurance or something else that wanted an actual diagnosis maybe for future accommodations or something?  Not sure.

    Hope it's negative!
    Angela- Mom to S- 8/9/04 (dx 5/4/11)  G- 6/4/08 and L- 4/3/12 and W- 3/18/15

    Offline stefaniemsmith1

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    Re: Celiac experience?
    « Reply #4 on: October 10, 2015, 09:24:10 PM »
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  • I don't have any experience but on my pessimistic days I fear that we'll be told that we have a celiac diagnosis one day.  Cuz that's the kind of luck we have.

    Hoping it comes back negative for you.

    Wife to my hero, Kevin
    Mom to Mackenzie (14, T1, DX 9/17/12, Pinging Green)
    & Kayleigh (7, T1, DX 11/20/12, Podding)
    www.prncsstefy.blogspot.com
    http://www.facebook.com/GigglyGirls

    Offline gsmama

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    Re: Celiac experience?
    « Reply #5 on: October 15, 2015, 05:41:15 AM »
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  • I was told that if the markers are there they will eventually get celiac. It was explained to me as someone having a cigarette, if you are predisposed, you will eventually get cancer. If you are predisposed for celiac and continue to eat wheat, you will eventually get celiac.

    I don't really believe Giovanni has celiac. Blood work was high but I think the doctor fudged the endoscopy results. Called it an angry intestine, really couldn't say celiac.

    That being said we are 100% gluten free but I do let him have a cigarette every once in a while (like every 6 months).
    Leslie in New Jersey: mom to ava 11 (non-d) and giovanni 13 (dx'd T1D 7/25/07 and Celiac 1/14)

    Offline KaelynsMom

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    Re: Celiac experience?
    « Reply #6 on: October 16, 2015, 07:02:05 PM »
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  • Thanks. I wish we could reboot her immune system. T1D, thyroid, crazy allergies and now possibly celiac. Argh.  Right now I am the only one GF and I'm not celiac level GF. I told everyone here thT if she tests positive then everyone is going GF whether they like it or not. My husband wants me to start finding recipes to prepare.
    -Stephanie  Mom to Kaelyn, age 7 DX 10/31/10




    Offline gsmama

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    Re: Celiac experience?
    « Reply #7 on: October 17, 2015, 08:22:33 AM »
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  • Thanks. I wish we could reboot her immune system. T1D, thyroid, crazy allergies and now possibly celiac. Argh.  Right now I am the only one GF and I'm not celiac level GF. I told everyone here thT if she tests positive then everyone is going GF whether they like it or not. My husband wants me to start finding recipes to prepare.

    I've adjusted all my own recipes, just made them gluten free. Gluten free flour and breadcrumbs (or I make my own). Gluten free pasta or rice as a side. I can help you with anything. We've been gluten free for a while now.
    Leslie in New Jersey: mom to ava 11 (non-d) and giovanni 13 (dx'd T1D 7/25/07 and Celiac 1/14)

    Offline KaelynsMom

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    Re: Celiac experience?
    « Reply #8 on: October 17, 2015, 11:16:44 AM »
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  • Thanks. I wish we could reboot her immune system. T1D, thyroid, crazy allergies and now possibly celiac. Argh.  Right now I am the only one GF and I'm not celiac level GF. I told everyone here thT if she tests positive then everyone is going GF whether they like it or not. My husband wants me to start finding recipes to prepare.

    I've adjusted all my own recipes, just made them gluten free. Gluten free flour and breadcrumbs (or I make my own). Gluten free pasta or rice as a side. I can help you with anything. We've been gluten free for a while now.

    This is where my problem is- i am not a huge cook/baker i find all things on Pinterest I don't have any recipes and wouldn't have an idea on how to convert! LOL I will have to msg you- I am in desperate need of biscuits and thanksgiving stuff right now
    -Stephanie  Mom to Kaelyn, age 7 DX 10/31/10




    Offline gsmama

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    Re: Celiac experience?
    « Reply #9 on: October 17, 2015, 06:00:39 PM »
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  • Thanks. I wish we could reboot her immune system. T1D, thyroid, crazy allergies and now possibly celiac. Argh.  Right now I am the only one GF and I'm not celiac level GF. I told everyone here thT if she tests positive then everyone is going GF whether they like it or not. My husband wants me to start finding recipes to prepare.

    I've adjusted all my own recipes, just made them gluten free. Gluten free flour and breadcrumbs (or I make my own). Gluten free pasta or rice as a side. I can help you with anything. We've been gluten free for a while now.

    This is where my problem is- i am not a huge cook/baker i find all things on Pinterest I don't have any recipes and wouldn't have an idea on how to convert! LOL I will have to msg you- I am in desperate need of biscuits and thanksgiving stuff right now

    I got Thanksgiving covered. Do not worry!!!
    Leslie in New Jersey: mom to ava 11 (non-d) and giovanni 13 (dx'd T1D 7/25/07 and Celiac 1/14)



     


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