Describe your life prior to diagnosis.
Before diagnosis, I thought I just had an unusually “sensitive stomach”; I didn’t consider that a lot of my issues were related to a single disorder. It’s clear now that I was far sicker than I realized.
My symptoms included severe GI symptoms (chronic and often urgent diarrhea, bloating, abdominal pain, stomach ulcer symptoms, gall stones), skin issues, joint pain and swelling that restricted my ability to enjoy my hobbies like climbing, weight lifting, and hiking, brain fog that was so severe I would fall asleep in my classes, severe depression.
Immediately prior to my diagnosis I lost more than 30 pounds in a few months, which was rather alarming.
How long did it take for you to get diagnosed since your first symptoms?
At least a decade or so. The biggest issue for me was probably the GI issues. I used to memorize bathroom locations or would make mental notes of them on the way into buildings or new areas.
The brain fog was also atrocious and significantly impacted me academically. After going gluten-free, the difference from before to after was night and day. I felt like I had been playing life on hard mode, almost like I was stuck in slow motion.
I had been missing law school classes for a while, which I stupidly chalked up to a particularly intractable and aggressive form of food poisoning. I was getting so weak it was hard for me to walk to my car in front of my house, let alone make it to class. As a result, I had a Zoom call with a professor to discuss my absences. She was so alarmed from my obvious physical deterioration that she told me to go to the hospital, and that she would discuss this with the Dean and note that I was clearly unwell.
I scheduled a primary care visit a few days later with a primary care doctor in South Bend, Indiana. Honestly, I give him and his training a lot of credit for testing for [celiac disease]. Based on my symptoms, the doctor ran a broad spectrum of blood tests. The celiac test came back as a strong positive result. Prior to diagnosis, I had little to no idea of what it was. All these symptoms, and others I hadn’t even thought of, like the joint pain and various skin issues, improved remarkably within a few weeks of being gluten-free.
Describe your experience living with celiac disease.
Obviously, getting glutened can still be distinctly unpleasant. Luckily, I’m careful enough that it only happens once or twice a year.
Traveling and going out to eat are a chore. I use apps, like Find Me Gluten Free, which is extremely useful for vetting locations beforehand. Still, I get symptoms from cross-contamination, so I have to be especially vigilant, and I tend to routinely eat at my “safe” spots once I’ve found them. It’s also very difficult to eat in large group settings, like large family events or weddings. Soy sauce is the sneaky ingredient that seems to trip people up most often. As a result, I tend to bring my own food just in case.
What would a cure mean for you?
A cure would mean sourdough. It means fresh pasta in Italy. A crisp Pilsner on an early spring afternoon. It means trying a bite. It means ordering food in only one sentence. In short, a cure means to once again walk in the world some of us took for granted.