One afternoon, Carter fell asleep during a family outing on a boat in Charleston Harbor. Beall remembers the ride was bumpy, and it concerned her that Carter had been able to fall asleep during it. Later that evening, when they were out to dinner, Carter didn’t want anything to eat. “He said he just couldn’t,” Beall recalls. Carter’s fatigue was blamed first on mononucleosis, then on anemia. But the tests came back negative, so doctors sent him to an infectious disease specialist, suspecting a viral infection. “We were increasingly concerned for his health the more time that went by without a diagnosis,” says Beall. After four months, Carter was finally diagnosed with Crohn’s disease (CD), a type of inflammatory bowel disease (IBD) that causes inflammation in the gastrointestinal tract. “A Crohn’s disease diagnosis can be overwhelming, and it’s a long and difficult process because whatever treatment you choose, it’s not an easy fix,” says Beall. “It’s a lifelong process.” For answers to how to treat their son, Beall, who is a PharmD, and her husband, an anesthesiologist, turned to what they knew: scientific research. They came across papers that studied nutritional therapy as a way to ease flares and induce remission in people, especially kids, with IBD. The most commonly studied therapy was something called exclusive enteral nutrition (EEN), a liquids-only diet that can either be drunk or fed into the stomach through a tube that’s inserted in the nose. After 12 weeks, or three months, on this particular diet, research shows that it normalizes inflammatory markers and can play a direct role in altering the pathways that cause gut inflammation. The diet isn’t easy to follow, according to Kendra Weekley, RDN, a registered dietitian at Cleveland Clinic’s Center for Human Nutrition who specializes in IBD. According to Weekley, while EEN is not widely used to treat IBD in adults, it’s practiced more commonly by adults in Europe, Australia, and Japan than in the United States, where pharmaceuticals are the preferred treatment. Despite the plan’s drawbacks, like not being able to eat solid food for as long as three months, EEN is the recommended first line of therapy to treat active Crohn’s disease in pediatric patients. During their appointments with Carter’s doctor, nutritional therapy wasn’t mentioned as an option, so they brought it to the table. The doctor said only that EEN was difficult to do and that they should stick to more conventional methods of treatment such as medication. “That’s what was really surprising to me, to find research supporting the use of EEN and being told that’s not something that was really done,” Beall says. “We were not against using medication; we just wanted EEN to be his primary therapy. We felt it would give him the best chance of achieving mucosal healing, which is associated with better long-term outcomes.” Doctors agreed that they could try EEN with their son and felt more comfortable combining it with budesonide, a steroid. Within two weeks, Carter’s color was back to normal and his energy had improved drastically. A normal course of EEN lasts 8 to 12 weeks. After just eight weeks, Carter was able to transition from the EEN formula to select solid foods, including salmon and soft-cooked vegetables. “With my background as a pharmacist and my husband’s background as a physician, we never really thought we would be champions of nutritional therapy. But we saw the benefits through our son,” says Beall.
EEN May Be Beneficial in Kids With Mild to Moderate Crohn’s Disease
EEN is the first line of treatment for Crohn’s disease — especially in kids — outside of the United States, where it is rarely used. According to Edwin de Zoeten, MD, a pediatric gastroenterologist at the Children’s Hospital of Colorado, this has to do with the culture of the healthcare system in the United States. “In the United States the issue many people have is that it doesn’t come up as a first-line therapy in many doctors’ minds,” Dr. de Zoeten says. Because it’s a lesser-known treatment in the United States and very difficult to follow, many IBD programs don’t have the tools or support to offer it, he adds. According to de Zoeten, every patient is unique, so treatment needs to be, too. He says many factors, including age, disease progression, location, lifestyle, and preference, can influence which IBD treatment is right for a patient. There are many types of drugs that can be used, but steroids and biologics are some of the most common. According to the Crohn’s and Colitis Foundation (CCF), corticosteroids work by suppressing the immune system, which reduces IBD-caused inflammation in the gastrointestinal tract. Nonsteroidal biologics work in a more targeted way. Biologics are lab-produced antibodies that deactivate specific proteins in the immune system that are associated with IBD-induced inflammation. But Crohn’s is often treated differently in kids and teenagers than in adults. And despite being less popular overall, EEN is a more commonly recommended course of treatment for Crohn’s in American kids and teenagers than it is in adults. The therapy can be particularly useful in inducing remission in kids and teenagers with mild to moderate Crohn’s while eliminating the unique risks some medications can pose to younger people. “Many studies show steroids to be the superior treatment for IBD in adults but come with complications as well,” says Weekley. According to a paper published in December 2020 in the journal Nutrients, about 10 to 15 percent of people with Crohn’s are diagnosed before age 21, with a peak age of maximum incidence occurring between 13 and 15 — a critical time of rapid growth and maturation. Issues, including growth failure, bone metabolism disorders, delayed puberty, malnutrition, and micronutrient and vitamin deficiencies, are already commonly diagnosed in pediatric IBD patients, and 20 percent of kids diagnosed with Crohn’s do not reach their target height by adulthood. “Steroids affect adrenal glands, cause acne, affect sleep, and can have psychological effects,” de Zoeten says. “We do everything we can to use as little steroids as possible in kids because there is the added risk of stunted vertical growth.” Because biologics have a good safety profile, many gastroenterologists and families choose them to achieve remission. For patients with more mild disease, EEN may be a good option. If the disease is advanced, such as with penetrating Crohn’s disease, which results in fistulae, EEN is never recommended and can even be harmful to patients, according to de Zoeten. A meta-analysis published in 2019 in the World Journal of Pediatrics included 18 studies of children with Crohn’s. The data showed kids who took steroids and kids who did EEN were both able to achieve remission at about the same rates. However, kids who received EEN were more likely to experience both endoscopic and complete mucosal healing than those who received corticosteroids. They also had more weight gain. A separate study published in 2019 in the journal Nutrients found that EEN in pediatric CD leads to remission in about 85 percent of patients and better heals the mucosal lining of the gastrointestinal tract compared with treatment with corticosteroids. The study authors noted that because medication does not always put a person into remission, other options, including dietary therapies, need to be considered. De Zoeten notes that because Crohn’s is a chronic disease, people should still understand that EEN is not a perfect fix and it’s not a long-term solution. “If you come straight off of EEN, you will likely have a flare within six months of stopping. But it can be challenging to do for longer than 12 weeks; it’s challenging enough during that time,” he says. “In places like Europe, where EEN is more commonly used than in the United States, nutritional therapy is viewed as a steroid-sparing therapy. At the 12-week point, patients plan to go onto medication.” According to de Zoeten, some people stay on a partial therapy that includes 50 percent EEN and 50 percent a low-carbohydrate diet, which can sometimes extend time spent in remission.
EEN May Be More Difficult for Adults
According to Weekley, adults are less likely to keep up with the strict EEN regime since they tend to have more social commitments that revolve around eating, such as parties, work events, or dates. Also, whereas children have their parents for support, adults may not have a multidisciplinary support system, including a healthcare team that includes dietitians, who can offer support to keep them on track. Weekley also stresses that EEN is not the only nutritional therapy for IBD and others may be easier to stick to. “While EEN has been tried-and-true in many studies, we cannot forget about the Crohn’s disease exclusion diet (CDED),” she says, referring to a sort of half-and-half diet that includes both supplementation and whole foods. There are mandatory foods and those that are off-limits, which prevents people, especially adults, from feeling excluded. “Having food options, along with nutrition supplements, can help with continued compliance,” she says.
The Future of Nutritional Therapy in the U.S.
According to de Zoeten, EEN still does not come up as a first-line therapy in many practices in the United States, and it’s currently offered by very few providers. But things seem to be changing. “There’s more and more acceptance in the United States, especially as some of our adult colleagues see diet as a component in IBD therapy. I think we will see change and see EEN at least offered as a choice in parts of the country it isn’t yet offered yet,” he says. For Beall, that choice is key. “We see nutrition as an essential component to be included with IBD medications. It’s really more a matter of aligning nutritional options with patients’ goals and resources,” she says. “EEN in particular is not right for everyone and it’s certainly not easy to do, but it can be very effective and it should be presented as an option.” Beall says that one other huge hurdle preventing EEN from being used in the United States is the fact that EEN is not covered by insurance, whereas pharmaceuticals are. But this may soon change. The Medical Nutrition Equity Act of 2021, which is currently in Congress, would get EEN and other nutritional therapies covered by insurance.
The Bealls Turn Their Experience Into a Nonprofit
The Bealls saw firsthand how EEN, combined with steroids, wasn’t just something her son was interested in and capable of carrying out but a treatment that worked extremely well to put his Crohn’s into remission. “That’s the reason we wanted to form an organization, to make nutritional therapies more commonplace for IBD.” She and her husband founded Nutritional Therapy for IBD, an organization dedicated to raising awareness about EEN and other nutritional therapies. EEN is just one form of nutritional therapy that’s used to treat IBD, and in particular Crohn’s disease. Beall says research on EEN provides a foundation of evidence on which all therapeutic diets for IBD are built, and has bolstered further investigation into other nutritional therapy regimens that can reduce inflammation in mild to moderate IBD. The goal of her organization is to bring together information — including scientific studies, ongoing clinical trials, and resources for clinicians — to make sure every person with IBD understands all of their treatment options, including the many types of nutritional therapies. According to Beall, not all options work for everyone, but they shouldn’t be automatically discounted. “The story of our son is not unique to our family,” says Beall, noting that most of the team members at Nutritional Therapy for IBD have their own experience with nutritional therapy. “Using nutrition as part of treatment has made a significant difference in their lives, which has driven them to want to make a difference in treatment for everyone.”
