I have celiac disease and a congenital heart defect. 
In many ways, it is difficult to separate. I didn’t know I had either until my 30’s & 40’s. I grew up doing endurance sports. My first triathlon was at 12 years old. I was hooked immediately. I remember watching the first televised Ironman triathlon in KONA. I was glued to the t.v. I said before the swim was over. “I’m going to do that some day.”
I joined the swim team to become a better swimmer, and after a few seasons, swimming took over my life as did the carbohydrate loading that came with endurance sports back in the 1980’s. My parents kept our attention on the sports and activities we wanted growing up. My junior/senior year I developed asthma. The harder I worked, the more I coughed. When I missed a big goal for myself senior year I quit swimming for many years. When the coughing went away I believed it was truly asthma.
In my early 20’s A couple of doctors mentioned a murmur during check-ups, but dismissed it as “everyone has one” or “it’s common, nothing to worry about.” Around this time, I began to struggle staying in shape. Even though I quit swimming, I continued cycling and running. I even used cycling as a mode of transportation. I felt like I would sleep a lot but still be tired, but everyone I talked to explained it away to how much I worked out.
A few years later, I graduated from college at age 31 with a lot of weight gain. I decided to get back into competition shape and started working in wilderness therapy settings primarily with at-risk youth. While on a dogsled trip in 2003, the coughing came back with a vengeance. Since I “knew” I needed an inhaler I started looking for a job with health insurance. In April 2003, I completed an adventure race with some girlfriends. I was so tired that I fell asleep before the awards ceremony took place.
A few weeks later I began a job with a residential wilderness therapeutic program for teenagers. During my first doctor visit the PA noticed my pulse was irregular. He didn’t think anything was wrong, but since I had insurance now, he did an EKG. Within 3 days and 2 more appointments it was recommended I have surgery the next day for an atrial septal defect. In true denial, I postponed it for 3 more weeks. If I didn’t finish training, I wouldn’t keep my health insurance.
I didn’t fully grasp what was wrong. I was a strong athlete! Phft. I’m FINE! This would be a blip on the screen. Unfortunately, it triggered celiac, which is an autoimmune disease with an intolerance to gluten. I developed a reaction to many of the foods we ate at work. Since I lived at work, I never really healed but didn’t understand what the problem was. Even while working out I gained 100 pounds and struggled to function – I was in pain all the time.
Finally, my cardiologist said that I would be better off with no health insurance than what I was doing to keep my job. After two years I left Vermont for Arizona. I sincerely hoped it was due to my health, but I did not like Arizona. Professionally it was not a good move. One day while talking with friends I said I should “just ride my bicycle away from here.”
I didn’t know what I was searching for any more, but knew I needed to do something drastic to get back into shape. I felt like I was slowly dying again, and it scared me. I always wanted to do a cross country bicycle trip. Why not now?!?
I left Phoenix AZ on Feb 27, 2006. I could do only 25 miles, and it took all day sunrise to sundown. I earned my fitness back, and lost some weight. But I didn’t know about the food allergies yet. I worked out harder to not lose fitness, and if I took a day off I always felt like I had a backslide. I was working wilderness again, and was gauging it from season to season for how much longer I would do this. I know the medical community hates ‘doctor google’ and (now as a nurse) I don’t blame them.
By 2012 my health was falling apart again, and I wasn’t getting answers for why my vital signs were higher side of normal. They had always been low normal except right around my heart surgery. A friend suggested gluten free a few years previous and with the help of google I finally listened. As I healed and I researched celiac and the link to heart disease and other autoimmune diseases, I decided to go back to school.
As a nurse, my focus is going to be alternative medicine and to focus on nutrition. I want to help people understand they have more power than they realize over their health. AND the power within them to do something about it. Now, about that Ironman…
Cindy Tennessen