In July 2000, I woke up one morning to find my ankle so sore and swollen I couldn’t put my foot on the floor. I’d had a fever for a few days, but that wasn’t unusual—I was always sick. But a sore foot was something new so I went to the doctor. His diagnosis: “You have the flu and a spider bite.” Two weeks later the other foot became swollen and sore. I knew that it couldn’t be another spider bite.
I went to my friend’s doctor this time. She said that he was good at diagnosing unusual illnesses and I had a long history of frequent, unusual health problems. By now I was having night sweats. I’d always had diarrhea, so I didn’t even think to mention it. I was tested for Lymes disease and the results were inconclusive. He sent me for a chest x-ray. I later found out that he suspected AIDS.
My chest films were clear, but my blood work showed severe anemia and elevated ANA. He sent me to Rheumatologist #1. By now, all my joints hurt as well as both feet, my ankles and calves were swollen, fluid filled, and sore.
Rheumatologist #1 diagnosed me with rheumatoid arthritis and gave me Celebrex. It helped a little, but a month and a bottle of iron pills later hadn’t budged my stubbornly low iron count. She said I had a condition common in people of Mediterranean decent, a different type of anemia. She sent me to a hematologist.
By now, I was in a wheelchair , my feet too tender to walk on, My hair was falling out and I had a fever most of the time. I couldn’t get out of a chair without help. I was 39 years old! The hematologist was appalled at my condition and was determined to help me. His diagnosis was based on my low blood panel: a problem with my intestines, possibly colon cancer. It was negative. The elevated ANA, joint pain and fevers convinced him, however, that I had an autoimmune disorder. He sent me to Rheumatologist #2 to get my “lupus” under control.
My newest symptom—bone pain—and an abnormally low calcium level made Rheumatologist #2 think CELIAC DISEASE.
With me sitting in her office, she literally ran out the door to the gastroenterologist and asked him for the “brand new blood test” for celiac disease. She called me several days later with my results: my blood levels were “off the charts”. She told me to begin a gluten-free diet and follow up with my doctors.
On my 40th birthday I underwent an endoscopy for biopsy, the results were inconclusive. (I had been gluten-free for several weeks). A panel of doctors reviewed my case and concluded that I did indeed have celiac disease, based mostly on my blood levels.
It wasn’t until I was diagnosed that my childhood problems made sense; frequent illness, infections, mouth sores, rashes (due to vitamin deficiency), delayed menses (I was 16). I always felt sick after eating my grandmothers pasta filled dishes! (We thought it was from all the butter). When my daughter was born, my iron was so low I wasn’t allowed to walk down the hall to see her in the nursery. My doctors thought my life-long anemia was due to my monthly periods, but eventually I stopped having them because of uncontrolled celiac disease.
Today I am 47 and feel better that I ever have, thanks to my doctors who kept trying to help me. Thanks to the Greater Philadelphia Celiac Support Group and the National Foundation for Celiac Awareness I am healthier than I’ve ever been! I have my life back. I hope to spare others needless pain and suffering and make them aware of celiac disease.
Does this story sound similar to your or a family members? You might have celiac disease, find out now, take our celiac disease symptoms checklist.