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How long did your celiac disease go without treatment?

Posted , 4 users are following.

stephanie70990
stephanie70990

I have been having digestive problems for almost coming on three years this summer. I would like to know when you guys found out you had it? I am very worried that this maybe a long time to go with Celiac and it did a lot of damage to things like my small intestines. I need to go for a blood test still. But I am almost postive I have a gluten intolerance. I did a diet for a few days and immediantly felt better. I went back to eating it of course cause I read you should for the test.

1 like, 3 replies

3 Replies

  • ooops64
    ooops64 stephanie70990

    Posted

    Yes you definitely need to carry on eating Gluten. When they test your blood, if you have Celiac, you will produce certain antigens in your blood. So that is what they will look for. If you stop eating Gluten you will not have these antigens, you will then get a false all clear. So wait for a couple of weeks to build up the antigens. Sorry I know it will cause problems. I have not got Celiac but I have a slight intolerance to wheat so I stay off it by choice.

    Regards Maureen

  • aveline
    aveline stephanie70990

    Posted

    I understand your worries, Stephanie!  My son was six when he was diagnosed and we were surprised with how extensive the damage was (every site biopsied was infected and his villus atrophy was towards the most damaged end of the scale). He did have stomach pain, but he had pain everywhere and his bowels never seemed affected plus he's one of the tallest kids in his grade. It took a solid six months on a strict GF diet to see major improvements, but he felt better sooner than that, much as you did.

    Please do continue to eat gluten for now and have the tests as soon as possible. I was mostly avoiding gluten due to concerns over contaminating my little one, and my blood work was fine for CD markers. Now I'm eating it for further testing as I have some malabsorption issues and a close relative with CD, so I am scheduled for endoscopy/biopsies next month.  You may not have CD, but complete tesing while eating gluten will let you know what's going on and how to heal yourself.  (Not too early to take a good probiotic if you don't already...)  Good Luck!

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