Figuring out where to turn after an unexpected diagnosis
By Miles J. Varn, M.D., Chief Executive Officer at PinnacleCare
For a year, Michelle hadn’t been feeling well. She saw several doctors, but no one could provide a diagnosis. When she and her young daughter were both finally diagnosed with celiac disease, she was overwhelmed and didn’t know where to turn. She shared how PinnacleCare helped her gain access to the care and advice both of them needed:
I had been sick on and off for a year, going back and forth to different doctors. One thought I had gallstones, so I had gallbladder surgery, but I still didn’t feel well. The doctors offered a lot of excuses about why that was — maybe I was eating too much or working out too much — but no real answers. I knew something just wasn’t right. I didn’t feel like myself.
Our family went on a trip to Disney World and the day after we got home, I got very sick and ended up in the emergency room. The doctors there couldn’t figure out what was going on. I had blood tests, saw a gastroenterologist, but no one could diagnose what was wrong. I remember sitting in my primary care physician’s office crying and saying something isn’t right and I need help.
My doctor referred me to yet another gastroenterologist who performed an endoscopy and biopsy that showed that I had celiac disease. When he called with the diagnosis, all he did was give me the address of a website for people with this disease. I didn’t know where to start. I knew nothing about this disease. What was it doing to me? What could I eat? What were my treatment options?
Right after my diagnosis, I was at the allergist with my four-year-old daughter. For years, we believed she had a milk allergy, but when I told the allergist about my diagnosis, he said she may actually have celiac disease.
Now I was even more motivated to find out about this disease and what we could do. The Health and Wellness office at work connected me with PinnacleCare and my advisor Amber. I had been lost in this web of websites, trying to find information, but when Amber came on board, she took care of everything, from gathering our medical records and getting releases for our medical information to vetting doctors and making sure they accepted our insurance. When we had a hard time finding a doctor who accepted our insurance, Amber never gave up.
She finally found a pediatric gastroenterologist and an adult gastroenterologist who specialized in treating people with celiac disease, as well as a family nutritionist all at one center of excellence. And she got us an appointment with these specialists in a few days when they were booking appointments months in the future.
Amber truly went above and beyond for us. She sent us books for my daughter so she’d be prepared for her appointments and the tests she had to undergo. Amber was a household name in our home. I felt like I had known her forever. I was so impressed with how diligent, thoughtful, and organized she was. She was always pushing to get what we needed. I knew I had an advocate on my side. I would never have been able to do what she did and it took a lot of anxiety out of the experience.
Without PinnacleCare, I don’t think I’d be where I am today. I might still be spinning my wheels trying to get answers. They really helped turn things around for me and my daughter.