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rileybennett added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsHelp Please! Test Results From 2006Hi everyone,
This is my first post on the site. Really looking for some help/answers.
I have been sick for most of my life. As a child, it started with pneumonia and constantly being sick. As I grew older it progressed, I was first diagnosed with Mono... which never went away. That led to me being diagnosed as a sufferer of Chronic Ebstein Barr, with unspecified immune deficiency and this wacky gene associated with XLP in males. I was sent to a fancy doctor at the Cincinatti Children's Hospital who looked at me and said there was nothing he could do.
My life has been miserable, I am in constant pain. Flu like pain, aches and pains, lower abdominal pain on my left side I always assumed was my spleen flaring up.
I did ok for a couple years. Just ok.. struggling my way through undergrad at IU. But this last semester, things have exploded. In constant almost excruciating pain. No one would help, so I requested all of my medical files and went through them with my mother, hoping there was something someone was missing.
There apparently was... In 2006 two separate Dr's tested me for celiac, and I tested positive both times. I was so mad, I had never even heard of this disease. So I started to look into it. A lot of things matched, a lot of things didn't. I don't have constant diarrhea, but do have constipation. I am not underweight. I won't go into the whole spiel but let me just tell you a lot of things made sense, and a lot didn't.
I got a new doctor, I couldn't believe anyone had let this slide by. I went to her yesterday, she is only willing to tell me it's a slight possibility, she says there are a lot of false positives. She is sending me to an allergist for a full workup.
Let me be really clear-- I do NOT want to have celiac disease. I have done a lot of research and I can relate to the suffering you all go through. I am not "hoping" for this diagnosis by any means. I just want an answer. I just want to NOT be miserable like this for the rest of my life.
What I am looking for from anyone who is kind enough to answer... how common are false positives? What should I expect from this allergist? I don't want to be blown off again by another doctor who doesn't care. I am tired of my quality of life, and all I need is some help.
Thanks so much in advance, and happy holidays.
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