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What Do I Need To Have The Doctor Test For?

ajnast4r

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ajnast4r Newbie
ajnast4r
Posted

ive never been officially tested for celiac, but i know i have it... i was taken off wheat as an infant and was off it nearly my entire life. recently after continuing bouts of fatigue & stomach issues, i went completely gluten free. it helped a little, but its not better yet...

im still having issues with fatigue and my stomach.. the doctor is testing me for a few other things now, lyme, epstein barr, etc.. but if those results come back negative, i want to have her run ALL possible tests to see if im reacting to trace amounts of gluten contamination before i start living in a bubble.

so what tests should i make sure she runs?

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Amyleigh0007 Enthusiast
Amyleigh0007
Posted

Make sure you are eating gluten prior to your testing. I believe it's equal to 2 slices of bread for at least 2-3 months, but if that is wrong I am sure someone will post and correct me. I was gluten "light" for 10 weeks prior to my testing and I am sure that's why my bloodtests came back negative. No one told me I had to stay on gluten for the test to be accurate.

ajnast4r Newbie
ajnast4r
Posted
  • Author
Make sure you are eating gluten prior to your testing. I believe it's equal to 2 slices of bread for at least 2-3 months, but if that is wrong I am sure someone will post and correct me. I was gluten "light" for 10 weeks prior to my testing and I am sure that's why my bloodtests came back negative. No one told me I had to stay on gluten for the test to be accurate.

if i eat gluten i die... so i cant really do that. there's no question that i cant eat gluten, what im trying to figure out is if indirect exposure is causing a steady but minor reaction which is resulting in fatigue.

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

Getting tested for Celiac (or gluten sensitivity) will be pointless if you are not consuming gluten. It's my understanding that the Celiac bloodtest panel is the only test that would show gluten sensitivity so I'm not sure what test you would want your doctor to run to see if you are getting indirect exposure to gluten. I guess there is the stool test that you can order online or allergy testing. You may have an allergy to wheat (my son does). I just thought I'd throw my two cents in. I'm sorry if I am misunderstanding your situation.

ajnast4r Newbie
ajnast4r
Posted
  • Author
Getting tested for Celiac (or gluten sensitivity) will be pointless if you are not consuming gluten. It's my understanding that the Celiac bloodtest panel is the only test that would show gluten sensitivity so I'm not sure what test you would want your doctor to run to see if you are getting indirect exposure to gluten. I guess there is the stool test that you can order online or allergy testing. You may have an allergy to wheat (my son does). I just thought I'd throw my two cents in. I'm sorry if I am misunderstanding your situation.

i didnt mean to come off harsh, that wanst my intention... i appreciate your input :)

im not directly consuming any gluten... but im still eating things 'processed in a factory that processes wheat products' and whatnot, and i think im still getting sick from them.

Amyleigh0007 Enthusiast
Amyleigh0007
Posted

And I totally understand your frustration. My son's second biopsy showed he still had damage and we figured it was from the foods that "are processed in a facility....." so we cut those. We also cut out all Frito Lay products (except Lays Stax) since I read on this forum that those cause problems in many Celiacs. I hope someone else has suggestions for you as to different tests your doctor could run. Good luck!

ravenwoodglass Mentor
ravenwoodglass
Posted
i didnt mean to come off harsh, that wanst my intention... i appreciate your input :)

im not directly consuming any gluten... but im still eating things 'processed in a factory that processes wheat products' and whatnot, and i think im still getting sick from them.

Go ahead and ask him for a celiac panel. Also ask him to test you vitamin and mineral levels. Although chances are that the test will come back negative it may still show a low level. Usually if a person shows a strong positive on the blood test doctors will run it again after a few months to see if those numbers are down and if they are not that may be a sign that CC may be sneaking in. Don't trust it for diagnosis at this point though.

I am also going to suggest the obvious- stop eating processed stuff for a bit then add in the things that you now suspect when you are feeling well. Add that item in for a week with no other risky stuff. You also may have issues with dairy, casien as well as lactose. Those should be dropped for a bit also.

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