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My Gene Test Came Back Positive!

cgilsing

By cgilsing
in Coping with Celiac Disease

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cgilsing Enthusiast
cgilsing
Posted

I'm one of those people that wants a real diagnosis. I feel like it's important to getting proper health care, and no gastroenterologist is going to take me as a patient without a diagnosis. Unfortunatly for me, when the posibility of celiac disease came up for what was making me sick, I was under the care of a family doc that didn't know anything about celiac disease and didn't know to send me to a GI. She told me that the way they diagnose celiac disease is by trying a gluten-free diet to see if it works. Well, it worked...and it worked really well! Over the next few months I did more research and discovered I should have had a biopsy before starting a gluten-free diet. I asked for a referal to a GI and low and behold 6 months after starting the gluten-free diet my test results came back inconclusive. The idea of eating gluten again to get a diagnosis is out of the question for me....it's not worth that! I can't even stand the thought of it. That GI refused to see me again, and was actually pretty nasty about it. I finally got up the courage to go to another GI about a month ago. I told him my situation, and that I wanted to be under the care of a GI. He was very sympathetic to my situation! He understood why I didn't want to eat gluten again. He said that everything pointed to celiac disease (a family history, dramatic improvment with a gluten-free diet, plus he said I was the picture of celiac disease....red hair, ghost white, Scottish heritage :lol: ) He said he, as a doctor, needed some proof of celiac disease though before he could really acknoledge that I did in fact have celiac disease (and I understand that). He said he was going to give me a blood test and do genetics testing. If that came back positive then he wouldn't make me do the gluten challenge and would take that as positive for celiac disease, given my symptoms. Well, I got the test back today and it's positive! I never thought I would shed tears of joy over a positive result for a life-long illness...but I did! :D

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jerseyangel Proficient
jerseyangel
Posted

Wow--glad you found out for sure!

TinkerbellSwt Collaborator
TinkerbellSwt
Posted

I am so happy for you! It is hard not having a concrete diagnosis. I need to find a GI around here that I can go to, just to keep up with me. Anyone here know of someone in central New Jersey?

mamaw Community Regular
mamaw
Posted

Glad it all worked out and put your mind at ease.....To this day I don't have an gastro doc because they just don't get it unless they have it.... Some are great but I haven't been so lucky so I just do my own thing and move on gluten-free...mamaw

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