Describe your life prior to diagnosis:
My digestive life was misery. I was especially affected in the mornings. I would stop for donuts on the way to work, and most days I needed a pit stop to use a bathroom, even on a short, 30-minute commute. Many days I would wake up, have my vitamins and juice, and vomit before I got out the door. These episodes were usually accompanied by a nasty migraine, sometimes with poor vision or seeing an aura. If I had a few regular beers the night before, things were noticeably worse. I would be drowsy and without energy on most days, but would work through it to get through the day, or coach youth baseball. In the afternoons I would come home from work and usually collapse on the couch exhausted, getting up only to make dinner or use the restroom. I would last minute cancel on family and social events.
I wasn’t diagnosed until I was 43 (and I’m currently 60), but I suspect I had it as a small child, brought on by some very traumatic events. Looking back on my childhood, it was filled with the same migraines, digestive issues, and fatigue.
Before I was diagnosed, I loved everything bread—French and sourdough, pasta, donuts, cookies—I craved them. The notion that the bread was causing my problems never occurred to me.
How did you come to know that you have celiac disease?
I may not have ever found out what ailed me if my brother hadn’t been diagnosed. He had to get lab work done in preparation for a pacemaker implant and was diagnosed with celiac disease as a result. When he told me of his diagnosis I researched what limited information about celiac disease was available online at the time (this would have been around 2004, 2003). Reading down the list of symptoms I was checking every box, so I immediately called my doctor for an appointment.
My regular doctor specialized in internal medicine, so you would think he’d be aware of and open to testing for celiac disease. My request was met with, “you don’t have celiac disease,” and “it’s probably IBS (irritable bowel syndrome).” I finally convinced him, due to my brother’s diagnosis, to test me. Within a few days I received a call back from doctor’s office confirming a positive test for celiac disease and was referred to a dietician for advice on how to cope.
Do you believe anything could have sped up your diagnosis?
I feel that if doctors were better educated on the symptoms of celiac disease and more open to discussing the possibility of the presence of celiac disease, people would discover their condition and make the necessary dietary adjustments more quickly.
Describe your experience with living with celiac disease:
A few years after my diagnosis, I experienced what I now know to be dermatitis herpetiformis (DH), a skin condition prevalent in celiac disease patients. I would have outbreaks of small patches of a very itchy rash on various parts of my body, most often on my feet. By 2006, more information was available online and, after a good amount of research, I made the educated guess that I had DH. After discussion with my doctor (and reluctance on my doctor’s part), a biopsy was performed, confirming the condition to be DH. Dietary changes have since calmed my symptoms, but I still have the occasional flare-up, mostly during the hot summer months when my feet are bound by heavy work boots all day.
Is there anything else you’d like to add to your story?
If there is one thing I would like people to know, it’s that your doctor may be reluctant to entertain the idea that you have celiac disease. I think part of it is their lack of knowledge about the condition and, in some cases, the fact that there is nothing they can prescribe to make you better other than a gluten-free diet. If this happens, push back and hold your ground until a test is performed. It could save your life. Indeed, continuing to eat gluten-based foods can cause all sorts of problems, including failure to thrive, unexplained weight loss, lost work days, countless hours spent away from family and friends, cancer, and many other conditions that hamper an otherwise normal, productive life.
