Personal Story About an Exocrine Pancreatic Insufficiency Diagnosis

The Long Road to My EPI Diagnosis

After years of digestive problems — which included diagnosis and treatment for celiac disease and ulcerative colitis — this Texas woman finally learned what else was causing her continuing symptoms: excocrine pancreatic insufficiency (EPI).
The Long Road to My EPI Diagnosis

Julie Davis was plagued by stomach problems during her early teenage years. “I was a ballet dancer and was constantly running to the bathroom,” says Davis, now 35. At first she didn’t tell anyone about her symptoms. “I was 14, and at that age you don’t want to talk about bathroom habits. But once it got to the point that it was impacting my life, I told my doctor,” says the Fort Worth, Texas-based physician assistant (who is also a certified personal trainer and licensed registered dietitian).

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."

Sanjai Sinha, MD

Medical Reviewer
Sanjai Sinha, MD, is a board-certified internal medicine physician and an assistant professor of clinical medicine and the director of the care management program at Weill Cornell Medical College. Helping patients understand health information and make informed decisions, and communicating health topics effectively both in person and through patient educational content, is a challenge that animates his daily life, and something he is always working to improve.

Dr. Sinha did his undergraduate training at the University of California in Berkeley, where he graduated magna cum laude. He earned his medical degree at the Albert Einstein College of Medicine in New York City in 1998 and completed his internship and residency training at the New York University School of Medicine in 2001. Subsequently, he worked with the Department of Veterans Affairs from 2001 to 2012 and held faculty appointments at both the Mount Sinai School of Medicine and Columbia University College of Physicians and Surgeons.

In 2006, he won the VISN3 Network Director Award for Public Service and a commendation from the secretary of Veterans Affairs for his relief work after Hurricane Katrina. He joined Weill Cornell Medical College in 2012, where he is an assistant professor of clinical medicine and the director of the care management program, as well as a practicing physician.

In addition to his work for Everyday Health, Sinha has written for various publications, including Sharecare and Drugs.com; published numerous papers in peer-reviewed medical journals, such as the Journal of General Internal Medicine; and presented at national conferences on many healthcare delivery topics. He is a fellow of the American College of Physicians.

Denise Mann

Author

Denise Mann is an award-winning health journalist in New York. Her articles regularly appear in Healthday, Wall Street Journal, Health.com, Newsday, American Profile, and other consumer health portals. She is the chief editor of Plastic Surgery Practice and a feature writer for WebMD. She writes about women's health, cancer, diabetes, heart disease, diet and fitness.

Her first foray into health reporting was with the Medical Tribune News Service where her articles appeared regularly in such newspapers as the Detroit Free Press, Chicago Sun-Times, Dallas Morning News, and the Los Angeles Daily News. She received the Journalistic Achievement Award from the American Society for Aesthetic Plastic Surgery in 2004 and 2011.

She lives with her husband, their miniature schnauzer, and their two sons. An avid indoor cycler, Mann is always up for a Soul Cycle class. In her spare time, Mann is working on a fiction novel loosely based on her extended family.