Whenever I tell Dan I’ve been reading health-related stuff on the internet, he rolls his eyes at me. I get it; I hate internet quackery and pseudoscience as much as the next person. And I think self-diagnosis via WebMD is absurd.
But I will say this: when you’ve been abso-fucking-lutely miserable for well over a year, it’s only natural to go searching for answers online. I haven’t been relying on WebMD and Isabel Symptom Checker alone though. As you know, I’ve been to lots of doctors and had lots of tests done—some of them twice!
I’m not saying I’ve figured anything out yet; I’m just saying…
There is value to this online research beyond the ability to commiserate with peers. I’ve been reminded that some of the things I considered personal flaws could actually be symptoms. Like hair loss, for example. My hair has always been pretty fine and wispy, but it’s falling out at increasingly alarming rates these days. That can be a sign of malabsorption.
“I think I have celiac disease,” I announced to Dan sort of seriously.
“Okay,” he laughed.
“I’m for real,” I said. “I was reading some stuff, and these people were describing my poop in perfect detail. You’ve seen all the hair I’m losing. I live on anti-diarrhea meds these days.” (Actually, “live” might be overselling. I tend to hover in the slightly less cheery state of being I refer to as “microwaved death.”)
“Maybe,” he shrugged.
I asked my primary doctor to draw blood and test for celiac disease several weeks ago. She did, and the test came back negative. But negative blood tests are possible with celiac disease.
My gastroenterologist consulation is next month. At this point I’d love to find out I have celiac disease. That sounds so horrible to say out loud. But it’s fixable. Every other autoimmune thing on the table has no solution. I want a solution.