“So should I stay or go?” It was my co-worker talking. I was a thousand miles from home, literally. That morning I had taken a plane to my client, despite not feeling well. I had steadily worsened through the day and ended up at the urgent care facility in the local hospital. I took another look around the emergency room. I knew they worked on a triage system, so I sized up the room to see who was “sicker” and therefore more likely to see the doctor first. Dislocated elbow. Flu. Sick baby. A thin guy shaking- possible drug overdose? “Go ahead,” I said, “It looks like I’m in for a long night, and we need to present our findings to the client on Wednesday.” As he left to go back to work, I tried to get comfortable in that hospital-issue chair. Five minutes later, I was lying in a hospital bed with an IV in my arm. My dress shoes were still on. I thought, “This can’t be good.”
After wishing my wife was with me, I thought about my doctor at home – my PCP. She had been my fifth primary care physician in as many years, owing to going back to school and insurance plan changes. Nearly a year ago, she surprised me as willing to listen, and when I told her I was anemic, she ordered some blood drawn. When we discussed the results, she said she was surprised I was even awake. I was dismissive,
“I’ve been anemic my whole life, doc. I run a lot, and I’ve always been pale.” Eat enough red meat? “Favorite food is steak.” She furrowed her brow and ordered more tests. “It’s a closed system,” she said, “you’re either leaking blood somewhere or you aren’t absorbing your iron.” I ran marathons and I thought, “Well, more hemoglobin would probably help me run faster.” So I went along with the tests, despite my busy travel schedule for my consulting work.
Every time I went to the doctor, she ordered blood work for iron. Iron pills didn’t do a thing for me. After a while, I started joking that I was anemic because they kept drawing so much blood. After nine months of non-invasive tests, she said. “I can’t believe these numbers. You have a choice. You can either go in for a scope or see a hematologist.” I opted to wait and see.
My work in Michigan had stepped up, so I really didn’t have time for doctor appointments. My marathon training was going okay, I’d just wrapped up a two hour run that Saturday, but somehow I never really recovered. That next Monday changed my life.
Focused on work, I lied my way out of the hospital. “Thank you so much. I feel much better.” Too sick to fly, I struggled through the week working from the hotel room. My wife collected me in a heap at the other end, exhausted.
The doctor summed it up, “You’ve been seriously sick twice this year, and you are anemic. You have got to figure this out.” With my IV fresh in my memory, I opted for the hematologist.
Hematology offices are scary. At least the ones I went to were. Patients look really bad. They carry oxygen tanks, or have someone with them to help with the oxygen tanks. They have “the cancer” and the people with them talk about suffering pain, long, drawn out pain. It was in this office I thought for the first time, “Uh-oh. This might be bad.” The first hematologist wanted to do a bone marrow biopsy right then. I declined, citing my running. I had a bad vibe with her, anyway. The second, more friendly, did blood work and said I had anemia. Score – Hematologists 2, Insights 0.
I talked it over with my wife and we decided that it was time for the Gastroenterologist. As much as I hated the thought, things were slow at work and it was an ideal time.
The colonoscopy/endoscopy wasn’t as bad as I imagined it would be. I didn’t remember much of anything. The doctor bounced in to my room when I was awake and said, “You’ve got celiac sprue – your villi are mild to severely blunted. Come see me in a week and I’ll tell you about it.” Still groggy, I asked her to spell it out. When I got home, I scheduled the first appointment I could.
In the meantime, I did some looking on the internet, and I can say that I was none too happy about what I found out about Celiac Disease. I read that it is a genetic condition, and that people with it must avoid gluten, which is found in products using wheat, barley, rye, and oats. That means no more regular bread, pizza or beer. At the appointment, my GI doctor gave me a quick rundown, said I could control it through diet, said there was a support group, fished out the support group newsletter, and said, “Ooo, too bad you just missed their meeting.”
Clutching my papers, I walked briskly out to the car through the slight mist coming down, and I cried for 15 minutes. I imagine that happens frequently in hospital parking lots. I could not imagine life without bread or pizza. I went home for a meal and then the panic really set in. No Frosted Flakes (malt-barley). No Rice Krispies
(malt flavor). No vegetable soup (wheat flour, barley), no Bean w/ Bacon soup (modified food starch-wheat). No Healthy Choice dinners (wheat). All my usual breakfasts, lunches and a good number of my dinners were off limits because they were killing me. Was I going to starve? Where would my next meal come from? My wife and I put two very tasty bags of groceries out for the postal workers food drive.
It’s not easy to overcome 30 years of ingrained food habits. My wife was wonderful. My insurance company was worthless when it came to paying for a dietician. I think I made it through the first two weeks on Coke, assorted nuts, and marshmallows.
A few weeks later, my doctor ordered a bone density scan. That surprised me, since I’d had about four helpings of dairy a day for my entire life and did weight bearing exercise for an hour a day five days a week. She was right. I wasn’t absorbing iron and I wasn’t absorbing calcium either. In a way, this osteoporosis diagnosis hurt worse than the first one, but I only cried 10 minutes this time. I think maybe once you hit bottom, there aren’t many tears left. I was 35 and I felt like I had a long road to recovery in front of me.
Things improved on the gluten-free diet. After six weeks, I stopped getting sick all the time and I had more energy. I went on Fosamax (a bone-building drug usually taken by post-menopausal women). I suffered from fatigue and bone pain while taking it, but I told my wife, “At least I know it’s working.” I gained a lot of weight, but it was disproportionately bone and muscle. As a result, my body composition improved dramatically. There were struggles and set backs (running was harder with an extra 20 pounds), but each day seemed a bit brighter than the last. My wife noticed dramatic improvement in my energy. She said, “After your Saturday long runs, you stay awake now.”