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To test or not to test

Cjm1985

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Cjm1985 Newbie
Cjm1985
Posted

I have been having issues with gluten for quite some time now and decided to go gluten free back in October, I finally got the celiac blood test a couple weeks ago and it came back inconclusive.

My doctor referred me to a gastroenterologist who I saw today, she told me I'd have to eat gluten rich foods for 1 month and then have another blood test done....of it comes back negative she said I'd need to eat gluten another few weeks (up to another month) and then do a scope and biopsy....this would be hell on me as I have severe cramping and nausea when I am exposed to gluten.  I haven't actually eaten anything that is straight gluten like bread so I'm not sure what would happen. She gave me the option to hold off and continue my diet or go through 2 months of pure gluten exposure (and pain)

my question is has anyone been faced with this? Should I just continue with my gluten free diet and assume I have it or is the diagnosis really that important? Doc says based on my symptoms and reactions I more than likely have it. 

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notme Experienced
notme
Posted

this is a very common subject on here.  personally, most of my tests were negative, but i did the same thing you did (stopped eating gluten before the tests) my gi advised me to continue eating gluten free because i was so malnourished and when i stopped the gluten i actually began to gain weight.  in other words, i think she was afraid for me to do the challenge bc it might kill me lolz.  some people want a definite dx if they have kids that need to be tested in the future, some will not follow a strict g//f diet without a firm diagnosis (they think they can cheat just bc they were never formally diagnosed) what happened with my scope is the dr saw evidence of damage.  that and my response to the diet were enough for me.  she advised me to stay gluten-free and i agreed.  it's been tough sometimes, but i never purposely cheated (that's how near death i was - swore i was dying of the big 'c'.......what a relief to not have that and my 'chemo' is 'impasta'.  or fake bread. ) 

welcome to the forum and good luck with whatever you choose  :)

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