By high school, Macy Stahl had learned how food affected her Crohn’s disease, and she was able to figure out some semblance of a normal diet, even if it was regimented.
However, when she was 16, one by one, the foods she’d learned to depend on left her doubled over in pain. Her disease flares were more severe and more unpredictable than they had been before. Her already slender 100-pound figure was reduced to 60 pounds in just three months, and Ms. Stahl was severely malnourished.
Like Ms. Stahl, many patients with IBD, as much as 85%, are malnourished (Nutrients 2020;12[2]:372). For some people, the onset of malnutrition is fast, and the damage is easily identified, as it was in Ms. Stahl’s case. But for many others, malnutrition is less severe, but it lurks in the background as constant fatigue or weakness due to ongoing vitamin, mineral and protein deficiencies.
A recent study found that malnutrition is going undetected in patients with IBD and that finding it in these patients will require more than questions about body mass index (BMI) and weight loss. Physicians need to be aware of what’s driving malnutrition in their patients, and how and where they can get support.
“In one-third of outpatients, there is still malnutrition,” said Daisy Jonkers, PhD, an associate professor at NUTRIM School of Nutrition and Translational Research in Metabolism at Maastricht University, in the Netherlands. In a study she and her colleagues presented at the 2022 European Crohn’s and Colitis Organisation (ECCO) meeting, a large number of IBD patients had a normal BMI, but when they conducted a closer analysis of fat mass and fat-free mass, they found low muscle mass in patients who appeared normal (abstract P116). “If the patient opposite you has a normal body composition at first glance, you won’t consider malnutrition,” Dr. Jonkers told Gastroenterology & Endoscopy News.
“Patients with higher BMIs may go underrecognized as being at risk for malnutrition,” agreed Carolyn Newberry, MD, the director of GI Nutrition at the Innovative Center for Health and Nutrition in Gastroenterology at Weill Cornell Medical Center, in New York City. “The people who are the sickest in a lot of GI diseases, they may be overweight but undernourished,” she added.
In addition, if an IBD patient’s malnutrition is flying under the radar, there’s a chance it’s making their disease worse. “It’s a vicious circle for the disease itself,” Dr. Jonkers said. “Lack of protein and essential nutrition can affect your immune system, leading to worse inflammation and worse disease outcome.” Apart from that, with a low muscle index you will also be very tired, she said.
How to Find Affected Patients
Finding these patients is imperative, but screening for them in a way that’s clinically feasible is the challenge. A DEXA scan is the most accurate, but it is prohibitively expensive and exposes the patient to radiation. “You can’t do that every month or twice a year,” Dr. Jonkers said. She recommended grip strength or a bioimpedance, which require inexpensive tools and can be administered by a nurse.
Berkeley Limketkai, MD, PhD, an IBD specialist and the director of clinical research at the Center for Inflammatory Bowel Diseases at the University of California, Los Angeles, said he understands the motivation to look for sarcopenia, but the added equipment and time needed to check for low muscle mass may not be worth the added sensitivity. However, he does screen every patient using the Malnutrition Screening Tool (MST) and assesses them via physical examination. Kelly Issokson, RD, a dietitian at the Nutrition and Integrative IBD Program at Cedars-Sinai Medical Center, in Los Angeles, uses the same approach. The MST uses two questions: Have you recently lost weight without trying? Have you been eating poorly because of a decreased appetite?
But such outpatient screening tools for malnutrition are not as well validated as those used for inpatients, according to Dr. Newberry. Dr. Jonkers also noted that these questionnaires are not sufficient to capture every IBD patient with malnutrition, but she added that if providers aren’t screening for malnutrition yet, tools such as the MST could be a place to start.
Diets that Sooth—and Starve
The widespread malnutrition in patients with IBD is tied inextricably to the diets patients use to nurse their disease. There are a dozen or more popular diets commonly used in the IBD community. Most of them are elimination diets that attempt to remove inflammatory, processed foods.
Ms. Issokson said the specific carbohydrate diet has led to improvements in symptoms and inflammation scores for many of her patients. The low-FODMAP (fermentable oligo-, di- and monosaccharides and polyols) diet is common among Dr. Limketkai’s patients. A recent abstract presented at ECCO found the new CD-Treat diet, meant to mimic enteral nutrition, significantly improved quality of life in patients with Crohn’s disease (abstract DOP68).
These diets may ease symptoms for some patients, but a separate study presented at ECCO looked at the nutritional composition of seven popular IBD diets used in pediatric patients with IBD and found them lacking (abstract P391). The study included the Crohn’s disease exclusion diet, CD-TREAT, specific carbohydrate diet, IBD anti-inflammatory diet, autoimmune protocol diet, gut and psychology syndrome diet, and low–FODMAP diet. Based on the dietary needs of 11- and 16-year-old boys and girls, some of the diets were deficient in vitamin D and calcium, some exceeded saturated fat allowance, and some consisted of more than a recommended proportion of calories from fat. The investigators concluded that “it is imperative that clinicians are aware of the risks of inadequate nutrient intake with restrictive diets.”
Since these restrictive diets can put IBD patients at risk, they should be used with extreme caution in patients with or who are at risk for malnutrition, according to Ms. Issokson. “With malnutrition, the priority is getting enough calories, protein and micronutrients for your body to function, heal and recover from the flare. It doesn’t matter how anti-inflammatory the diet is—healing will be delayed in the setting of malnutrition.”
She also cautioned that just because a patient is feeling better, it doesn’t mean inflammation in the gut is improving. Even if they feel that a diet is working, confirmation with further testing is essential. A diet that isn’t nutritionally adequate or improving luminal disease can be more problematic than helpful in the long run.
It’s certainly not necessary or even reasonable for gastroenterologists to know the ins and outs of every therapeutic diet, but it’s important to know if patients are on such a diet and for how long, Dr. Newberry said. This knowledge can pinpoint patients who need additional nutritional support because they are at risk for becoming malnourished or need help deciding when and how to come off a diet without instigating a flare.
Emerging Risks: Eating Disorders
Sometimes IBD patients create their own diet based on their unique dietary triggers and the demands of their day. But this approach can be problematic because it can foster food fear and aversion. Dr. Limketkai regularly hears of patients who don’t eat because of an event, a meeting, a flight or a doctor appointment.
Because of the rise in malnutrition brought on by disordered eating, Dr. Limketkai said psychologists are increasingly critical members of his team. They can help patients process their food fear or anxiety in the context of their gastrointestinal symptoms, he said.
“We are recognizing a high amount of disordered eating in IBD,” Ms. Issokson said. This is another group of patients who are best off avoiding common restrictive IBD diets. Restrictive diets can reinforce the behaviors that lead to harm and accelerate malnutrition, she said.
Adding to the Care Team
Patients benefit not only from the expertise of dietitians and psychologists, but also from their time and ongoing monitoring, Dr. Limketkai said. Gastroenterologists often don’t have time to walk patients through dietary changes week by week or the nuanced manifestations of food aversion, but these are critical processes in the health of an IBD patient. If providers are trying to decide when to bring in other experts, they should reference the Crohn’s and Colitis Foundation’s Nutrition Care Pathway.
For GI specialists, Dr. Newberry said, “it’s really about recognizing these patients, not overlooking them. Once malnutrition is identified as a problem, the best next step is to get them hooked in with a nutrition support provider.”
If your institution has a registered dietitian who specializes in IBD, then you’re set. If not, you’re in good company. Dietitians are a critical, but certainly not universal, resource.
If a gastroenterologist is in private practice or doesn’t have access to nutrition specialists at an institution, they should try to find a local dietitian, in either a nearby hospital or private practice. Gastroenterologists should express the patient’s need for dietary counseling and ask them to consider expanding their work with IBD. This is how Ms. Issokson came to specialize in this area. Physicians at Cedars-Sinai expressed a need and she began working to help those patients.
The same is true for psychologists. Psychologists should consider asking a local practitioner to join alongside them and their patients. In an ideal world, they also could connect malnourished IBD patients to an exercise physiologist, Dr. Newberry said.
“The intersection of GI and nutrition is becoming a multidisciplinary approach,” Dr. Limketkai said. Building a team of physician collaborators gives gastroenterologists more time to focus on the disease, while other experts support and advise them through the nutrition-related symptoms.
—Donavyn Coffey
This article is from the July 2022 print issue.