Celiac Disease?

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jessicatombari
jessicatombari Posts: 159 Member
in Chit-Chat
Hi there! Does anyone here have Celiac disease? I have a few questions and was wondering if I could reach out to someone who has experience with this illness? Thank you!

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  • GailK1967
    GailK1967 Posts: 58 Member
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    I'm not coeliac but I have 3 kids who are.
  • jessicatombari
    jessicatombari Posts: 159 Member
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    beingmore1 wrote: »
    My dad and uncle have it.
    GailK1967 wrote: »
    I'm not coeliac but I have 3 kids who are.

    How did they all find out they have it?I have had blood tests and scopes that were negative but I am still feeling like I do have this illness. They told me "IBS" but I started a gluten free diet and I feel amazing! Every symptom I've had since elementary school (I'm 21 now) has disappeared within the first week or two! Did this feel the same for both of you and/or your kids?
  • livingleanlivingclean
    livingleanlivingclean Posts: 11,751 Member
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    Perhaps consider seeing someone (ie. A dietician) about following a low FODMAP diet. Many people who think they have gluten intolerance actually have issues with FODMAPs instead...
  • RachelElser
    RachelElser Posts: 1,049 Member
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    Not me, but my brother. There's a specific allergy test your doctor can do. It was a bit pricey because there weren't a whole ton of labs that run it. But that was 10 years ago so maybe it's less expensive now.

    He also had a SHITE ton of blood test and scans and what not. Talk to your Dr about the test specifically for Celiacs. I mean they were testing for crazy diseases that are prominent in Asian countries, or mostly in different races but didn't do the Celiac test for three years!

    Good luck!
  • jessicatombari
    jessicatombari Posts: 159 Member
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    livingleanlivingclean wrote: »
    Perhaps consider seeing someone (ie. A dietician) about following a low FODMAP diet. Many people who think they have gluten intolerance actually have issues with FODMAPs instead...

    I do follow a Low FODMAP diet already and I've had no issues with many foods others do. Although it has helped reduce the feeling of bloating overall.
  • jessicatombari
    jessicatombari Posts: 159 Member
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    Relser wrote: »
    Not me, but my brother. There's a specific allergy test your doctor can do. It was a bit pricey because there weren't a whole ton of labs that run it. But that was 10 years ago so maybe it's less expensive now.

    He also had a SHITE ton of blood test and scans and what not. Talk to your Dr about the test specifically for Celiacs. I mean they were testing for crazy diseases that are prominent in Asian countries, or mostly in different races but didn't do the Celiac test for three years!

    Good luck!

    Thanks! I have been tested but part of me believes it is a false negative. Just not sure as I don't know many people with this illness so it is hard to relate to only Internet articles all the time.
  • Cat3141
    Cat3141 Posts: 162 Member
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    livingleanlivingclean wrote: »
    Perhaps consider seeing someone (ie. A dietician) about following a low FODMAP diet. Many people who think they have gluten intolerance actually have issues with FODMAPs instead...

    This. A registered dietitian (RD or RDN) would be a good next stop. If whatever is going on is food related, an RD will be able to help you find a diet that relieves your symptoms without creating other nutritional deficiencies.
  • livingleanlivingclean
    livingleanlivingclean Posts: 11,751 Member
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    I'm sure you have to be eating gluten for them to able to do the test - I have a few friends with coeliacs in their immediate family. A couple have been eating gluten free without being tested themselves and refuse to "gluten bomb" themselves so they can find out definitely if they're coeliac.
  • faramelee
    faramelee Posts: 163 Member
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    I had blood tests a couple of months ago, including testing for coeliacs and my Dr told me to make sure I included gluten in my diet for a couple of days prior to the test. It came back negative but I have since read info on the UK Coeliac site whereby it states that you should include gluten for at least six weeks prior to being tested for a true outcome. I find it so frustrating!!

    I wish you the best of luck :)
  • arcountrygirl1931
    arcountrygirl1931 Posts: 1 Member
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    I have it! It's a pain!

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