Davis was ultimately diagnosed with three separate but often co-occurring gastrointestinal disorders: celiac disease, ulcerative colitis, and exocrine pancreatic insufficiency (EPI). Her first diagnosis, celiac disease, came in 2004. Celiac disease is marked by the inability to digest and absorb gluten, a protein found in wheat, rye, and barley. Symptoms may include abdominal bloating, pain, and diarrhea, according to the Celiac Disease Foundation. Treatment typically involves eating a gluten-free diet. For about five years, this diagnosis and management plan worked for Davis, but then something changed. “I was eating gluten-free and then my symptoms, such as weight loss and frequent bowel movements, started coming back,” she says. “I knew there was something else going on.” And there was. In 2009, Davis was diagnosed with ulcerative colitis, a chronic disease where the lining of the large intestine is inflamed. Symptoms can include loose and bloody bowel movements, persistent diarrhea, abdominal pain, fatigue, and weight loss, according to the Crohn’s and Colitis Foundation of America. Testing for colitis also confirmed inflammation and scarring in Davis’s pancreas that had developed after multiple bouts of acute pancreatitis (inflammation of the pancreas). Davis was treated for the colitis but still experienced weight loss, frequent bowel movements, and fat in her stool, as well as several more episodes of pancreatitis. It was clear the puzzle was not yet solved. In July 2011, Davis was diagnosed with EPI caused by pancreatitis. “It was sort of a relief to put a name on it,” she says.
Enzymes and EPI
“EPI can be caused by pancreatitis and it can coexist with celiac disease and inflammatory bowel diseases such as Crohn’s disease and ulcerative colitis,” says Mohamed Othman, MD, professor of medicine at Baylor College of Medicine in Houston. The pancreas produces enzymes that aid in digestion, Dr. Othman says. People with EPI don’t produce enough of these enzymes, so they can’t digest food properly, according to the National Pancreas Foundation. EPI symptoms can include frequent diarrhea, weight loss, oily stools that float, gas, bloating, and abdominal pain. These symptoms are similar to those caused by other gastrointestinal disorders, he says. “These enzymes are needed to break down fat, protein, and carbohydrates into smaller molecules,” Othman says. “Without sufficient enzymes, food goes undigested and nutritional deficiencies can develop.” What’s more, when too much fat builds up in the intestines, pain, gas, diarrhea, and fatty stools can result.
The Path to an EPI Diagnosis
Diagnosing EPI isn’t always easy, Othman says. “Sometimes you can see fat in stool and that the pancreas is calcified on diagnostic scans, but other times the scans look normal and the person may not see fat in their stool,” he says. The main EPI diagnosis tests measure the amount of pancreatic enzymes in stool (fecal elastase), the amount of fat in the stool, or they conduct an evaluation of pancreatic secretion (via an endoscopic pancreatic function test, in which a long tube is inserted down the throat and into the stomach to collect samples). Diagnostic scans may be used to look for inflammation and scarring of the pancreas. For Davis, initial scans had shown enough inflammation in her pancreas. This, along with fatty stools, was enough to warrant a trial of replacement pancreatic enzymes. “As far as testing for EPI, I didn’t have any specific stool tests or blood tests because it was already known that I had multiple bouts of pancreatitis that had basically worn my pancreas out,” she says. “The enzymes were started based on my symptoms and history alone.” Today, Davis still takes replacement enzymes and eats gluten-free but otherwise follows what she describes as a “pretty normal diet” to control EPI symptoms. “There’s some trial and error,” she says. If she notices fat in her stool or any symptoms returning, she tries to tweak her diet. Communication with her doctor has been key throughout Davis’s journey to figure out what was causing her symptoms. Her advice to others: “Don’t be afraid to tell your doctor what’s going on."
