The actual number of people with EPI is unknown, because it often goes undiagnosed. It is prevalent in people with certain conditions, though, according to StatPearls:
About 60 to 90 percent of people with chronic pancreatitis develop EPI within 10 to 12 years after diagnosis.Approximately 66 to 92 percent of patients with advanced pancreatic cancer develop EPI.Between 14 and 74 percent of people with inflammatory bowel disease (IBD) have EPI.
The disease is sometimes missed because the symptoms can be similar to those of other conditions, such as celiac disease, irritable bowel syndrome (IBS), IBD, Crohn’s disease, and malabsorptive disorders, such as small intestinal bacterial overgrowth (SIBO). To better understand this digestive disorder, read about these six common myths about EPI. Then learn the facts and more about the latest EPI research.
Myth 1: Vitamin therapy alone can treat EPI.
Because EPI prevents your body from absorbing necessary vitamins in food — particularly vitamins A, D, E and K, according to the National Pancreas Foundation (NPF) — it could be assumed that vitamin therapy can manage the condition. But vitamins alone do not work, according to Steven D. Freedman, MD, PhD, a professor of medicine at Harvard Medical School and the director of the Pancreas Center at Beth Israel Deaconess Medical Center in Boston. “You need pancreatic enzymes to allow absorption of vitamins,” says Dr. Freedman. “You can take a ton of these vitamins, but if you are missing the enzyme, no matter how much you take, you will have minimal absorption. It’s like a car with flat tires. No matter how much gas you put into it, it won’t move.” According to an article published in February 2017 in the journal BMC Medicine, of which Dr. Freedman was one of the authors, PERT dosage must be tailored to each meal. The research shows that PERT is most effective in timed increments. For example, an entire dose can be taken at the beginning of a 15-minute meal, but if the meal will last up to 30 minutes, you should take half the enzymes with the first bite and the other half in the middle of the meal. “The rationale for taking pancreatic enzymes throughout the meal is to mimic the action of our own endogenous pancreatic enzymes, where secretion from the gland occurs throughout the meal,” explains the article. How much of the PERT medication you need will vary, too. The more food that is ingested and the greater the amount of fat that is in the food, the greater the amount of enzymes needed to digest it.
Myth 3: Everyone with EPI should eat a low-fat diet.
Because you cannot digest fats with EPI, a low-fat diet used to be recommended for EPI patients. The inability to absorb fat is the primary cause of steatorrhea, weight loss, and vitamin deficiencies. But today, it’s understood that your optimal diet depends on the cause of your EPI. For chronic pancreatitis patients with EPI, Dr. Freedman recommends a diet including about 30 grams of fat a day. In contrast, in patients with cystic fibrosis, it has been shown that high-fat diets — around 100 grams a day — along with much higher doses of pancreatic enzymes have better outcomes and ensure greater nutrient absorption. Moreoever, people with EPI should be able to have more freedom in their diet if they are taking the right amount of medication. “In theory, if one is taking enough enzymes, you should be able to eat whatever you want,” says Christopher DiMaio, MD, a professor of medicine at Icahn School of Medicine at Mount Sinai and the director of the Interventional Endoscopy team for Mount Sinai Health System. “The problem is, it’s not one dose fits all.” For example, if someone has been prescribed two capsules with meals and one with a snack, that dose might need to be adjusted with an additional pill if they have a meal that’s particularly higher in fat. Doctors also recommend consulting a dietitian to assess whether you are getting enough nutrients. A dietitian can also recommend the best nutrient-dense foods.
Myth 4: EPI leads to cancer.
EPI doesn’t cause cancer — and, specifically, pancreatic cancer — but the relationship between the two diseases is complicated. Pancreatic cancer and EPI are linked because they share a risk factor of chronic pancreatitis. “In some patients with pancreatic cancer, the initial presentation may be EPI symptoms, but it’s a consequence, not a cause,” says Dr. DiMaio. Further, pancreatic cancer surgery may cause EPI. DiMaio says new evidence is showing that more people develop EPI from pancreatic surgery than previously thought. EPI develops when more than 90 percent of your pancreas is destroyed (though recent research suggests that EPI may happen earlier, according to StatPearls), whereas pancreatic cancer usually occurs in only one part of the pancreas. The only instance in which there may be an increased chance of EPI is when the cancer is at the head of the pancreas, according to research published in October 2019 in the Journal of Clinical Medicine.
Myth 5: EPI restricts your movements and keeps you housebound, since you always have to be near a restroom.
Diarrhea, or loose stools, is one of the major symptoms of EPI, so you may think the disease will limit your travel and activities, because you’ll always need fast access to a bathroom. But this should not be the case if you’re managing your symptoms correctly. The most common problem with treating EPI is underdosing, says DiMaio. “Those patients with EPI who are symptomatic are either not taking enough or not taking the medication appropriately,” he says. In fact, underdosing is a much greater concern than overdosing, DiMaio says. The latest formulations of enzyme capsules are time released to coincide with food passing into the small intestine. So, with the exception of people with conditions that result in delayed gastric emptying, which slows food down, the enzymes are very well tolerated and safe. People with EPI should be able to lead a normal, active lifestyle.
Myth 6: OTC enzymes work just as well as prescription medications.
People are drawn to over-the-counter (OTC) pancreatic enzymes because they are inexpensive and readily available. Prescribed PERT capsules can be prohibitively expensive and may not be covered by your insurance. But DiMaio says an effective enzyme capsule must have a minimum of 33,000 units of lipase, and OTC formulations have not been approved nor regulated by the Food and Drug Administration, so they may contain far fewer enzymes than they claim. “You would probably end up taking a whole bottle a day to get the amount you need,” says DiMaio. Enzyme replacement is the most important part of your EPI treatment regimen. It’s important for you to take them as your doctor prescribes so you can experience relief from symptoms. Check out GoodRx for coupons, and go to NPF’s financial assistance information page to find resources that may be able to help with the cost of prescription PERT medications.
