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Searching For An Answer

dellatigre

By dellatigre
in Dermatitis Herpetiformis

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dellatigre Newbie
dellatigre
Posted

Hello everyone. I am thankful to have found this board. I hope it helps me to finally find an answer. I will try to make this as short as possible. I guess my main question is......could someone still have celiac despite a negative blood test? and possibly a negative biopsy. i was on prednisone during these tests. so i wonder if that would effect them.

ok, now here is my story and why i have a strong suspicion of celiac. i am irish and italian (i think it is common in irish heritage?). while training as a gymnast 10 years ago i began having major IBS symptoms, fatigue, and weakness. along with a blistering rash. i have been diagnosed with dermatomyositis. usually it is pretty treatable with meds but i have been a difficult case. the stomach/intestinal symptoms go along with the "disease" process. i am VERY weak now. i have many vitamin and mineral deficienies despite an excellent diet. i am on immunosupression therapy and prednisone to help the myositis which is an autoimmune disease.

reading all of the symptoms of celiac, it really seems like i have had it most of my life.....i have read a lot of research on the correlation of celiac and inflammatory autoimmune diseases. my docs won't help me....they dont think there is a connection. i just want to rule it out FOR SURE. because i am young , dealing with a lot of health issues and i have a great wish to be well. i was a state champion gymnast and now i am struggling to walk.

so i have requested a copy of the tests they did 7 years ago for celiac to make sure they were really done. i had a biopsy to look for crohns disease and i asked the GI doc to please test me for celiac while he was in there....he said "you dont have that" but he said he did it and i didnt have it. i never saw the results so i would like to verify that.

is it still possible to have celiac even with negative tests? a false negative? especially being on prednisone which can mask many things.

thank you for ANY info. anyone can give me. i was thinking of getting the enterolab test done. or asking my docs if they can do a genetic test for celiac.....

not sure where to go with this...but have a strong feeling i need to look into it more.

Rachael

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CarlaB Enthusiast
CarlaB
Posted

I had negative blood tests, negative biopsy, but positive test results from Enterolab, two genes for gluten intolerance and positive dietary response. I'd recommend getting the tests done by them if you want to know for sure. If you're okay with dietary response being adequate testing, then try it.

dellatigre Newbie
dellatigre
Posted
  • Author

hi Carla....what symptoms did you have? did they go away when you went gluten free? thank you for answering so quickly....

i want to go gluten free anyway but i would really be strict if i knew for sure. i have others cooking for me now because of my weakness....so i have to make sure i am putting everyone through this for a good reason....haha.

thanks again.

Rachael

I had negative blood tests, negative biopsy, but positive test results from Enterolab, two genes for gluten intolerance and positive dietary response. I'd recommend getting the tests done by them if you want to know for sure. If you're okay with dietary response being adequate testing, then try it.

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