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Testing For Cd

lgranott

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lgranott Rookie
lgranott
Posted

I have been on a gluten free diet for nearly 8 months and am feeling much better then Ihave for a very long time. I have not however been tested for celiac disease. If I am feeling better, should I get tested and if so, don't I have to have gluten in my system when tested?

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KaitiUSA Enthusiast
KaitiUSA
Posted

Unless you need an offical diagnosis for some reason then I would not bother to get tested. If you are gluten free and feel better I would go with that. If you did want to be tested though, you would need to be on gluten for about 3 months and eat equivalent to about 3 pieces of bread every day for that long.

lgranott Rookie
lgranott
Posted
  • Author

Thank you! Definately NOT worth it... The thought of bread is painful :rolleyes: It was suggested that I get tested and have a biopsy done. Is there any benefit to having a biopsy done?

KaitiUSA Enthusiast
KaitiUSA
Posted

I had a definite diagnosis by blood tests alone. Doctor felt there was not a need for a biopsy with the results.

The tTG blood test is usually elevated when there is damage done and mine was almost triple what it should have been. That test is said to be taking the place of biopsies in the near future for kids too(its a very specific test) So in my opinion a complete blood panel is just as good for a diagnosis as a biopsy is.

A biopsy can be good but a negative result will not rule celiac out. There may not be damage yet, or there may be sporadic damage that they miss.

With an official diagnosis there can be positives but also negatives because it is harder to get insurance.

There are then positives and negatives to both ways so you have to decide if it is worth it for you. At the point you are at, if I was in that position, I would not think it would be worth all the pain when there is a chance it could be inaccurate

lgranott Rookie
lgranott
Posted
  • Author

Makes sense. I guess part of me wants to know if it isn't celiac b/c there is already so much I can't/won't eat. Vegetarian (choice) and can't eat dairy...Ahh!! There isn't much left when I take out gluten... That isn't really true, I have plenty to eat, but not easy when I am not at home.

I have been very careful about not letting gluten near me, but every once in a while I wonder if I really need to be as careful as someone with celiac. And sometimes consider trying gluten to see, but that is also very inaccurate (and painful sounding).

Do I just live the rest of my life gluten free???

KaitiUSA Enthusiast
KaitiUSA
Posted

You could get back on gluten and then get a blood test done in a few months. Make sure you get a complete panel done though which consists of the following:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

They usually do blood tests first.

Also, if you get a gene test done if it is negative you likely do not have celiac but you could just have a gluten intolerance. If you do have a main gene for it you would have the predisposition to it and could have it.

You could try out an Enterolab to.

If you have celiac you need to be gluten free for life. If you are gluten intolerant you should be gluten free for life but the damage is not done with just the gluten intolerance.

julie5914 Contributor
julie5914
Posted

What about a gene test? Can't those be done if you are not on gluten? I haven't had one, but that is the gist I got.

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KaitiUSA Enthusiast
KaitiUSA
Posted

Your gene test can be done at anytime as far as I know. Genes can't change with your diet.

celiac3270 Collaborator
celiac3270
Posted
What about a gene test? Can't those be done if you are not on gluten? I haven't had one, but that is the gist I got.

You can absolutely do a gene test any time you want...on or off a gluten-free diet. As Kaiti said, your genes do not change with your diet...your antibody levels will, which is why the other tests need to be done while on gluten, but the gene test can be done at any time.

jazzyjess Newbie
jazzyjess
Posted

i have a similiar situation my blood did not detect coeliacs but i have been on the diet for 4 months and am feeling so much better because of it it would be good to know whether it is coeliac disease or just an intolerance though most symptoms point towards coeliacs and my doctor says it almost definately is do any of the tests work when you are on a gluten free diet cos it would be horrid to go through it all again just to be tested

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