I've had several mystery health problems, but my major complaint has been chronic fatigue for the last year. I've gone to my general practitioner... she's ordered blood work, heart tests, sleep tests, had me on antidepressants and antacids and sleep meds and stimulants... and no diagnosis. I've been seeing a neurologist/sleep specialist and even a GI specialist... and still no answers.
A friend has Celiac's and encouraged me to do my own research, and it seems to explain every issue I'm having. I cut out gluten and within two or three days I was already feeling a million times better. After several days of being gluten-free and feeling great, I asked my GP and she ordered the celiac blood panel. When it came back negative, she pretty much refused to consider gluten intolerance, despite the research I've found that the blood test isn't accurate if you're already gluten-free, has a high number of false-negatives, and only detects Celiac's (not gluten-intolerance). My neurologist didn't think it was gluten since I haven't lost a bunch of weight (I've gained a lot over the last year since the fatigue made it near impossible to exercise) or experience severe GI problems. And the GI just wants to do an endoscopy since I came in asking about gluten sensitivity... without doing any sort of comprehensive background or even seeing all of my previous blood work results.
After my blood test came back negative, I started eating gluten again, and felt worse than ever. I had more GI distress in those few days than I've ever had before, and my fatigue came back full force. Less than a week later, I returned to the gluten free diet. It's been 3 weeks, and I'm feeling better than I have in months.
I'm sure part of my problem is that I'm in a pretty small town, but how do you go about getting a diagnosis? I don't want to self-diagnose. My friend with Celiac's lives hundreds of miles away, or I'd go to her doctor. None of my doctors seem to have any experience or knowledge about this problem, so I'm not sure they could recognize a gluten issue if it walked up and introduced itself.