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Getting Tested


gfpagan

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gfpagan Apprentice

If I am going 100% gluten free because of gluten intolerance is getting tested for celiac necessary? Either way I'm going to be gluten free and it's not like they are going to cure me for knowing for sure. Anyone else in the same boat?


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maile Newbie
If I am going 100% gluten free because of gluten intolerance is getting tested for celiac necessary? Either way I'm going to be gluten free and it's not like they are going to cure me for knowing for sure. Anyone else in the same boat?

the short answer is No, you don't need to be tested. Some feel it's easier because there is less resistance to having a gluten-free diet if you have an official diagnosis but as many have said you don't need a Dr's permission to go gluten-free.

I'm self diagnosed, my Dr is a wonderful guy but old school and has trouble with the fact that I am not losing tons of weight yet still claim to be gluten intolerant. (he keeps sending me for blood tests even tho I tell him not to bother because I haven't eaten enough gluten for it to register ;) )

there are many self diagnosed on this board and others. given how hard it is to diagnose celiac by conventional testing it's not surprising many have just decided to forgo gluten rather than go through a gluten challenge just to maybe be diagnosed.

gfpagan Apprentice

Great reply! that makes me feel more confident in my decision. I hate the idea of having to go back on gluten to get a test that may or may not tell me something that I'm going to do anyway.

Thank you!

the short answer is No, you don't need to be tested. Some feel it's easier because there is less resistance to having a gluten-free diet if you have an official diagnosis but as many have said you don't need a Dr's permission to go gluten-free.

I'm self diagnosed, my Dr is a wonderful guy but old school and has trouble with the fact that I am not losing tons of weight yet still claim to be gluten intolerant. (he keeps sending me for blood tests even tho I tell him not to bother because I haven't eaten enough gluten for it to register ;) )

there are many self diagnosed on this board and others. given how hard it is to diagnose celiac by conventional testing it's not surprising many have just decided to forgo gluten rather than go through a gluten challenge just to maybe be diagnosed.

Tallforagirl Rookie
If I am going 100% gluten free because of gluten intolerance is getting tested for celiac necessary? Either way I'm going to be gluten free and it's not like they are going to cure me for knowing for sure. Anyone else in the same boat?

You may not need to know, but if you're not going to get tested I'd err on side of caution and get a full blood count and bone density test. Vitamin deficiencies and osteoperosis are very common amongst undiagnosed celiacs, but both treatable if caught early.

rinne Apprentice

Hi. :)

I agree, blood work to look at your vitamin and mineral levels is a very good idea, many celiacs are deficient in B and D vitamins and supplementing with them can be very helpful.

I never went the route of testing because I too understood that gluten was a problem for me, in my case though a brother and sister both diagnosed through endoscopy made the decision easy.

gfpagan Apprentice

I wouldn't need to go back on gluten to get these tests done right? Maybe I'll make an appointment with a diet change and talk to them about tests that should be done.

Hi. :)

I agree, blood work to look at your vitamin and mineral levels is a very good idea, many celiacs are deficient in B and D vitamins and supplementing with them can be very helpful.

I never went the route of testing because I too understood that gluten was a problem for me, in my case though a brother and sister both diagnosed through endoscopy made the decision easy.

rinne Apprentice
I wouldn't need to go back on gluten to get these tests done right? Maybe I'll make an appointment with a diet change and talk to them about tests that should be done.

Nope, no gluten required for these tests. :)

And congratulations on having the confidence to make a choice for yourself.

I think the gluten challenge is a horrific thing to do to our bodies, somehow being sick enough to feel like you are dying and eating the foods that are making you feel this way in order to do enough damage that they can see it just doesn't work for me. :lol:


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gfpagan Apprentice

Thank you (-: I feel good knowing I discovered it myself and didn't have the frustration (at least too much) of doctors trying to tell me otherwise.

Nope, no gluten required for these tests. :)

And congratulations on having the confidence to make a choice for yourself.

I think the gluten challenge is a horrific thing to do to our bodies, somehow being sick enough to feel like you are dying and eating the foods that are making you feel this way in order to do enough damage that they can see it just doesn't work for me. :lol:

Leper Messiah Apprentice

I'm in the same boat although I'm weighing up tackling the stoopid gluten challenge just to get a prescription for gluten free food (from the NHS in the UK) - it is literally costing me a fortune. Here's hoping a better way to test and confirm gluten intolerance is not too far away.

one more mile Contributor

There should be a better way to be tested. I have not been tested and can not imagine Eating what I know is poison just to find out officially that it is. In the uk will they accept the DNA test?

ang1e0251 Contributor

I think it is barbaric to make you eat gluten for weeks for a test. Come on, do you know any GI dr that would rub poison ivy all over his body every day for 3 months just so it could do a huge amount of damage to skin to dx it?

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    • nanny marley
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    • Wheatwacked
      Hello @A Wilson, Glad you found us.   There is your answer.  The results from the tests are just more data to the puzzle.
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