These serious symptoms are overlooked, yet they’re connected to many diseases. Here's what you should know about exocrine pancreatic insufficiency.
Julie DuBois, 28, has willfully made herself the voice of people with exocrine pancreatic insufficiency (EPI).
A striking blonde with long, flowing hair and an athlete’s physique, Dubois is a dietitian and elite personal trainer with EPI. She has celiac disease and ulcerative colitis. But it was chronic pancreatitis that triggered the EPI.
The condition is difficult to diagnose because it’s an underlying complication of pancreatitis, irritable bowel disorder, diabetes, celiac disease, cystic fibrosis, and other autoimmune diseases.
A deficiency of the exocrine pancreatic digestive enzymes, EPI results in the inability to digest food properly. That leads to a loss of nutrients because they can’t be absorbed in the intestines.
Resulting symptoms include vitamin deficiency, bone loss, and gastrointestinal problems such as weight loss, nausea, loss of appetite, gas, bloating and steatorrhea (loose stools with unabsorbed fat).
If you have exocrine pancreatic insufficiency, you know it’s more than just unpleasant. It’s potentially dangerous. The weight loss from malnutrition has been related to an increased risk of illness and cardiovascular disease, according to a paper on EPI diagnosis and treatment.
Dubois was diagnosed with EPI in 2011 and has talked about having all the usual symptoms, building bathroom breaks into her ballet classes to avoid unfortunate consequences. It became a game changer for her lifestyle, prompting her to set aside embarrassment and see her doctor for diagnosis and treatment.
If you have chronic pancreatitis you are at the greatest risk for EPI. Over years of living with the disease, the inflammation can lead to irreversible damage to the pancreas, including the cells that secrete pancreatic digestive enzymes. If you have the symptoms that characterize EPI, don’t let them fester. Like DuBois, you are much better off discussing the unsavory side of EPI symptoms with your doctor.
Testing for diagnosis of exocrine pancreatic insufficiency is widely available. Sometimes it’s not necessary. “The probability of pancreatic exocrine insufficiency after severe necrotizing pancreatitis, gastrointestinal and pancreatic surgery, as well as in patients with cancer of the head of the pancreas, tends to be higher than 80 percent,” says the paper’s author.
That usually leads you directly to pancreatic enzyme substitution to relieve malnutrition and increase absorption of nutrients the body needs.
Dubois keeps a food journal to document what’s she’s eating and the calories those foods contain. She also records symptoms that seem to be associated with certain foods. That journal helps her, and can help you, fine-tune your diet in consultation with your doctor.
She has the advantage of being a dietician, making her more familiar with what her food options are. But you can educate yourself over time to learn that as well.
Extra measures of support for your gastrointestinal (GI) system include stress reduction and plenty of sleep. Dubois says both affect her GI symptoms, for better or worse.
Generally, you want to avoid dehydration, which can worsen EPI symptoms. Also, ease into a low-fat diet. Less fat could help lead your bowel movements back to regularity and lessen, if not eliminate, stools that are far more unpleasant than usual, to put it politely.
A study of Japanese patients with chronic pancreatitis and steatorrhea found that it occurs less and is milder in that population because their fat intake is lower than that of Americans and Europeans.
You’re still going to need some healthy fats in your diet so you can metabolize mineral supplements and fat-soluble vitamins A, D, E, and K. You need them all. That’s where your doctor or dietitian can help you choose which foods are best for you.
A high-fiber diet may be good for most of us, but for people with EPI, it could lead to more gas and flatulence, a study found. Again, if you have EPI, talk to you doctor about how much fiber you need and how much fiber you can actually ingest.
Another tip: Don’t smoke or drink. Of course, both habits are bad for your general health since they increase the risk of heart disease and cancer. They’re also not friendly to the pancreas.
EPI stays under the radar for a couple of main reasons. One, its symptoms may not seem distinct to you from the disease that causes it. Two, it's not pretty. But, now that you know what it involves, acknowledge it and get help. Young and beautiful Julie Dubois did, and you can, too.
March 25, 2020
Janet O’Dell, RN