If you are one of the more than three million people in the United States living with inflammatory bowel disease (IBD), you are likely struggling with anxiety around food. Many living with IBD associate specific foods, or even whole food groups, with getting sick, and so they avoid many foods. This common misconception has led many with the disease to become malnourished.
Stephanie Gold, MD
In this Q&A, Stephanie Gold, MD, Instructor of Medicine (Gastroenterology) at the Icahn School of Medicine at Mount Sinai, explains why IBD patients struggle with food anxiety, how they can overcome this problem, and where to get more information.
What is IBD, and how is it different from having a food intolerance or allergy?
IBD is a condition that includes Crohn’s disease and ulcerative colitis. Both are characterized by chronic inflammation of the gastrointestinal tract that often leads to diarrhea, abdominal pain, and rectal bleeding. IBD can also lead to fatigue, weight loss, malnutrition, and vitamin and mineral deficiencies. Specific foods are not known to trigger IBD flares. IBD is different from irritable bowel syndrome (IBS), food allergies, and food intolerances, as it is a chronic inflammatory condition of the entire digestive tract (Crohn’s disease), or specifically, the large intestine (ulcerative colitis), which can inhibit absorption and impair digestion.
How common is malnutrition among people with IBD, and what are the symptoms?
While the exact prevalence of malnutrition in patients with IBD is unknown, we estimate that about 30 percent of patients seen in our outpatient IBD clinic are malnourished, and up to 80 percent of those requiring hospitalization are malnourished. Malnutrition can produce few or mild symptoms, or it can result in more serious symptoms of increased fatigue and weakness, as well as specific symptoms associated with vitamin and mineral deficiencies, such as rash, mouth ulcers, muscle spasm, pins and needles, loss of appetite and irritability, and many other symptoms.
Why do many people with IBD have food anxiety, and how does this affect their everyday lives?
Patients with IBD often associate their gastrointestinal symptoms—abdominal pain, diarrhea, rectal bleeding, nausea or even vomiting—with the foods they eat. More specifically, patients commonly believe that a food they ate immediately prior to the development of an IBD flare or complication is the cause of their worsening disease, and naturally tend to avoid these foods in the future. While certain foods may contribute to gastrointestinal symptoms in some patients, food does not directly worsen IBD or cause disease flares. Unfortunately, IBD-related food anxiety can lead to a very restrictive diet overtime, which can result in long-term malnutrition and vitamin and mineral deficiencies.
I have IBD. What should I eat?
All patients with IBD are unique and therefore should discuss diet and nutrition with their gastroenterologist. However, in general, here at Mount Sinai, we encourage our patients with IBD to eat a wide variety of foods and to have an overall healthy diet that is rich in fruits and vegetables, lean proteins, whole grains, and heart healthy fats. While many used to believe that all patients with IBD need to avoid fruits and vegetables, we now understand that the micronutrients and certain types of fiber found in fresh produce can be very beneficial for the gastrointestinal tract. While raw fruits and vegetables may contribute to symptoms in some IBD patients, texture modification, such as peeling, cooking, and even pureeing specific, easier-to-tolerate fresh fruits and vegetables, can make these vital foods better tolerated in patients with active disease or ongoing symptoms. However, we guide dietary recommendations based on type of IBD as well as disease location, activity, and complications, and therefore, it is really important for patients to seek specific nutrition guidance from their gastroenterologist or dietitian. This is especially true of those with an ileostomy or intestinal narrowing (stricture), as this requires additional dietary modification. There is a lot of ongoing research in this area, and we hope to be able to better define a more specific, ideal diet for IBD patients in the future.
What resources are there to help me improve my diet?
It is essential that people with IBD ensure they are getting adequate nutrition from a wide variety of foods. The best thing they can do is seek out professional guidance from a registered dietitian who specializes in working with IBD patients. Since there is not one specific diet that we can recommend for all patients with IBD, a registered dietitian can help evaluate and broaden the diet based on your specific disease type, location, activity, and current symptoms. To find a dedicated IBD dietitian, you can ask your gastroenterologist for a referral. In addition, many of the gastroenterology societies, including the American Gastroenterological Association, have lists of registered dietitians who specialize in IBD that are available to the public. Patients with IBD should feel empowered to ask their gastroenterologist any nutrition-related questions and inquire about additional support from a registered dietitian when needed.