The last thing Tom Hopper, then 65, expected to hear in late February 2008 was that he had celiac disease. But after enduring five months of frightening and inexplicable symptoms and being hospitalized five times, he knew something clearly wasn’t right.
Hopper first experienced one of his “sessions,” when he was 64. For seven hours he was vomiting, had diarrhea and felt excruciating cramping in his legs and feet. At times during this and subsequent episodes, the pain in his legs was so bad, he had to hold onto a door just to stand up. The vomiting always ended after bringing up bile that had leaked into his stomach. Delirious, weak and dehydrated, he would head to the hospital.
It wasn’t until he was on his way from his hometown of Ellicott City, Maryland to Boston for business that Hopper finally found out what was causing these excruciating bouts of poor health. After enduring a plane ride of painful symptoms, Hopper spent an hour and a half in the airport bathroom waiting to feel well enough to buy a return ticket home. While in line, he doubled-over in pain. After checking his vital signs, airport medics called an ambulance and he was rushed to Massachusetts General Hospital where he stayed for 11 days.
There he underwent a battery of tests – MRIs, CAT scans, blood work and more – just as he had during his other hospitalizations. Once stabilized, he began eating hospital food but his symptoms quickly returned. He was put on a liquid diet of Jell-O, juice and broth until the symptoms disappeared. After returning to regular hospital food and experiencing symptoms, which again went away on the liquid diet, something clicked with the doctor overseeing his stay.
A DNA test (Hopper is part of the 10 per cent of people who test negative to the blood test designed to detect celiac disease) and an endoscopy confirmed the doctor’s suspicions that this was celiac disease. After three days on a gluten-free diet, Hopper was much improved. He was released from the hospital and returned home to Maryland.
According to groundbreaking research conducted by a team led by Dr. Alessio Fasano, the medical director of the University of Maryland Center for Celiac Research, Hopper is part of a growing trend. More and more adults are developing celiac disease quite late in life, and then being diagnosed with it.
For years, experts on the disease believed that such people had simply gone undiagnosed for many years of life, as celiac symptoms can be vague and are similar to symptoms of many other diseases. Alternatively, the theory was that they may not have even had symptoms, even though gluten was damaging their small intestines.
However, the findings, published online in Annals of Medicine in October, 2010, suggest that adults who are genetically predisposed to developing celiac disease may actually tolerate gluten their whole lives without a problem. Then one day, something changes and the body can no longer tolerate the protein, found in wheat, barley and rye – celiac disease has developed. For people like Hopper, this means re-learning everything you knew about grocery shopping, cooking, eating at restaurants or at friends’ homes.
Next: Findings a Bolt from the Blue