Celiac Disease: My Diagnosis Story
There are a few things people typically ask when they find out I have celiac disease.
- What happens if you eat gluten?
- Have you always had celiac disease?
- How did you figure out that’s what it was?
My answers? Extreme pain and irreversible damage to my intestines. Yes, because it’s genetic, but I didn’t always know. And the final one — that’s a long story.
The path to diagnosis is so different for everyone. Sometimes I’m not sure when mine really began. I often experienced stomach pain as a kid. There were the mild stomach pains that just faded into my memories, and then there were the really debilitating ones that stand out, like when I could hardly move the day after a church lock-in and had to miss my dance company’s all-day dance workshop.
But it wasn’t until I went to college that it started seriously disrupting my life. I had a lot more stomach pain than usual my freshman year. And stomach pain is so tough, because people can’t see it. My new friends cared about me, but they didn’t know my history. They didn’t know that my pain was normal and yet unusual in its consistency. So they often wondered aloud if the pain was all in my head, and after a while I couldn’t help but wonder that, too.
Fall of my sophomore year, the pain was a constant. For the first time, I skipped a few classes when I knew I couldn’t sit up long enough to make it through. One Friday evening Mike Wilbon (of ESPN fame) was on campus, and I had tickets to his talk. We had to wait in line to get into the auditorium, and after five minutes, I realized I couldn’t stand or sit long enough to make it through the whole talk. I trudged back to the dorm, one slow step after another, leaving my friends in line. I spent most of the time I wasn’t in class laying in bed. And I cried, more often than I’d like to admit.
That’s when I finally realized what I was experiencing wasn’t normal, and I started looking for answers. The doctors at the on-campus clinic were determined that I was simply constipated and eating more fiber would solve everything. They didn’t seem at all interested in digging into the root problem. And on top of that, eating more fiber and drinking more water had done absolutely nothing to alleviate my pain or symptoms. So when I went home for Christmas break, I saw a gastroenterologist.
If I have any advice from my experience, it’s to find a doctor who listens to you and who you feel comfortable with. Gastrointestinal problems inherently require talking about details most of us keep to ourselves (and I’m so conditioned to this, my friends and family now tell me I share a bit too much!). Find a doctor you trust with those details.
That doctor immediately said I should not be experiencing such an intense intestinal change, and she began to order tests to find the answer. I spent my Christmas break having blood tests, a CAT scan, an endoscopy, and a colonoscopy. None of those tests revealed the answer, and initially I was devastated. I was convinced I could handle any diagnosis, as long as I got some answers. But the tests did reveal some things that made my doctor order a stool test and genetic swab. And those were the two tests that finally led to my diagnosis of celiac disease. They also revealed that what my family had always thought was lactose intolerance was actually casein intolerance.
So, I had my marching orders: Stop eating all gluten and dairy. Immediately.
That wasn’t easy, and you can check out my tips for starting a gluten-free diet that are straight from my experiences. But the first step was knowing what was wrong. It’s incredible, looking back on everything, how much of my tears and frustration were from the not knowing, and from people not believing something was really wrong with me.
So I’m no doctor, but I would like to say that if you are in a similar situation, stand up for yourself. Fight for answers. It’s the first step toward getting better.
Do you have a similar story — or a wildly different one? Share it in the comments. We’d love to hear about it!