Dorothy Carpenter had stomach problems her entire life. Eating as much as a bite of bread or pasta could lead to terrible pain.
Her illness went undiagnosed for years until a University of Michigan Health System physician recognized it as celiac disease. By then her long-standing condition had become an intestinal mass, a cancer that forced doctors to remove part of her small intestine.
"I've been in this body 65 years and I know what's normal for it and something's radically wrong here," Carpenter recalls telling William D. Chey, M.D., director of the Gastrointestinal Physiology Laboratory at the University of Michigan Health System. "He listened."
Celiac disease, a condition characterized by severe, chronic inflammation of the small intestine, develops from exposure to a dietary protein called gluten. Gluten is most commonly found in grains including wheat, rye and barley.
Carpenter's cancer, non-Hodgkin's lymphoma, developed as a result of her undiagnosed and untreated celiac disease, Chey told her.
Treatment involved removing 48 inches of her small intestine and a small mass, and undergoing chemotherapy. It's been five years since she was diagnosed and treated and she feels great, says Carpenter, 70.
She has also had to change her lifestyle - maintaining a gluten-free diet.
"Living a gluten-free life, it's what you make of it," Carpenter says. "You have to make up your mind that these are things I have to do if I want to live."
Since she was diagnosed, she's noticed stores have gotten better about stocking gluten-free products and labeling foods properly. "It's getting better all the time," she says.
Awareness and proper diagnosis of celiac disease have improved dramatically in the last decade, says Chey.
"When I was a medical student many years ago, we were taught that celiac disease occurred or could be found in approximately one in 500 to 1,000 individuals within the United States," he notes.
Data from within the last five years, however, show celiac disease is significantly more prevalent than previously thought. It can be identified in up to one in 133 individuals within the United States, Chey says.
People who suffer from celiac seem to have a genetic predisposition and the disease can remain latent or asymptomatic for a long time until it becomes unmasked or more clinically apparent through laboratory studies or symptoms, Chey says.
Diseases like diabetes mellitus, auto immune thyroiditis, premature bone loss or iron deficiency anemia have all been associated with celiac disease, Chey adds.
"If you are affected by any of those conditions you should be tested," Chey says.
Celiac can present itself in a variety of ways, such as abnormal laboratory values like low blood counts or abnormal thyroid function, malnutrition, weight loss or a life-threatening disease.
The more common way for it to present itself is with vague GI symptoms, such as bloating, excessive gas, loose stools or abdominal cramping.
Symptoms can be similar to those of irritable bowel syndrome, and new IBS guidelines by the American College of Gastroenterology recommend that newly diagnosed IBS patients get screened for celiac disease.
Chey warns that individuals with very long-standing, untreated celiac disease have an increased risk for developing cancer, primarily of the GI tract but others as well.
Screening is done through a blood test. Therapy consists of instituting a restricted diet devoid of gluten, which tends to inflame the small intestine and lead to more serious problems.
"The key takeaway is that celiac is more common than previously thought, that there are tests available to diagnose the condition and that treatment is highly effective and relies upon a diet rather than drugs," says Chey.