Dr. Benjamin Lebwohl
Benjamin Lebwohl, MD, an adult gastroenterologist at NewYork-Presbyterian/Columbia, is dedicated to supporting patients living with celiac disease. A leading national expert on Celiac disease, Dr. Lebwohl is the director of clinical research at Columbia’s Celiac Disease Center, the first program in New York City dedicated to the treatment of celiac disease.
In people with celiac disease, the body mounts an immune reaction to gluten, proteins found in wheat, barley, and rye. The nature of this immune response is not an allergic reaction but rather a delayed type of immune response, attacking and damaging the small intestines. Celiac disease affects nearly 1 percent of people in the U.S., and treatment requires strict adherence to a gluten-free diet.
“There is a great need for research, education, advocacy, and the development of cutting-edge clinical care in the diagnosis and treatment of celiac disease,” says Dr. Lebwohl. “I am particularly struck by the resilience of patients and their familiars in the celiac disease community as they navigate what can be a challenging diagnosis and treatment.”
Several factors led Dr. Lebwohl to specialize in treating celiac disease, including training with Peter Green, MD, the Phyllis and Ivan Seidenberg Professor of Medicine at Columbia who founded the Celiac Disease Center in 2001. “His interest, intellectual curiosity, and his compassion for diagnosing and treating patients inspired me to work with him,” he says.
Dr. Lebwohl is part of a multidisciplinary team of adult and pediatric gastroenterologists, dietitians, pathologists, and research staff dedicated to delivering the highest-quality care, access to the latest therapies, and innovative research.
Adults can be diagnosed with celiac disease at any age. “Some of our adult patients have been living with celiac disease since early childhood and are very used to the gluten-free diet but require ongoing monitoring for consequences of celiac disease in adulthood, like osteoporosis” says Dr. Lebwohl. “Other adults may have been diagnosed in middle age or older, and that may pose unique challenges to adjusting to a new, life-changing diet. Among elderly patients, there are additional considerations, including monitoring for complications.”
According to Dr. Lebwohl, the great majority of people with celiac disease live with this condition without major complications. However, there are rare serious consequences of celiac disease that are sometimes diagnosed in older patients, such as refractory celiac disease, which is resistant or unresponsive to a strict gluten-free diet, and certain cancers like non-Hodgkin lymphoma and small intestinal adenocarcinoma.
Updates on the Diagnosis and Management of Celiac Disease
Traditional diagnosis of celiac disease in the United States includes serologic tests, specifically tissue transglutaminase immunoglobulin A (TTG IgA). If that test is positive, then patients undergo an endoscopy to take an intestinal biopsy to confirm the diagnosis. However, the European Society for Pediatric Gastroenterology, Hepatology, and Nutrition (ESPGHAN) has been using guidelines for diagnosis that forgo biopsy.
Last year, Dr. Lebwohl provided his expertise to the American College of Gastroenterology to update its Guidelines on the Diagnosis and Management of Celiac Disease, acknowledging ESPGHAN’s guidelines for diagnosis, and suggesting that they may be applicable in select circumstances.
“A major focus of these guidelines has been on how the celiac disease is diagnosed,” he says. “We have blood tests that are pretty accurate but not 100 percent reliable. As such, we typically require an intestinal biopsy to confirm the diagnosis. But in certain situations, we might consider the diagnosis based on blood tests alone.”
Dr. Jacqueline Jossen
“This is a very controversial and hot topic within pediatric gastroenterology,” says Jacqueline Jossen, MD, a pediatric gastroenterologist and member of the Celiac Disease Center. “Essentially, if a patient walks into your office with certain lab parameters, you might be able to make a celiac diagnosis without biopsy based on these labs.”
Dr. Jossen notes that there is fear within the pediatric community about use of these guidelines. ““Part of the fear is that these criteria will be applied incorrectly,” she says. “We don't want patients to be misdiagnosed, and we want to make sure they are able to establish care with a knowledgeable gastroenterologist and dietitian.”
Dr. Lebwohl acknowledges the concerns that relying solely on blood tests will lead to false diagnoses but also recognizes the practicality of ESPGHAN’s recommendations. “This new set of guidelines acknowledges that there are certain situations where an intestinal biopsy might not be practical,” he says. “As such, we lay out terms in which one might rely on blood tests alone. This is a stringent set of criteria, and most children and adults would not be considered as having met these criteria and will still require an intestinal biopsy.”
ESPGHAN recommends that if TTG IgA is over 10 times the normal limit for the lab, and you have a positive endomysial antibody (EMA) in a second blood sample, a biopsy is not needed to make a celiac diagnosis in children. The non-biopsy approach, which is based on prospective data in children, has been used in Europe since 2012.
Dr. Jossen notes that an important part of the guidelines is informed decision-making with the families. “A non-biopsy diagnosis requires that the family agrees with this approach,” she says. “I think that’s important because they need to understand that if they want to go back for a biopsy later, that will involve a gluten challenge. Additionally, there’s a possibility that we will miss another disease by not doing the biopsy. All these things are important to talk to [patients and] parents about before making this decision.”
Tackling Misinformation Regarding Celiac Disease and Gluten Sensitivity
The rise of popularity in the gluten-free diet has been drastic in the past decade. Drs. Lebwohl and Jossen recently coauthored an editorial in Digestive Diseases and Sciences aiming to educate other providers about non-celiac gluten sensitivity (NCGS). “There’s a widespread phenomenon of gluten avoidance among the 99 percent of people who do not have celiac disease,” says Dr. Lebwohl.
In the article, Drs. Jossen and Lebwohl responded to a new study assessing NCGS highlighting claims about the gluten-free diet that are either unproved or have been refuted, including that “the diet is healthier, promotes weight loss, improves acne, alleviates gastrointestinal symptoms, or is effective as an adjunct treatment for autoimmune diseases.”
Whereas those with celiac disease have been diagnosed using serologic and histologic biomarkers, NCGS is challenging to measure or confirm in clinical practice.
A comparison of a section of healthy small bowel compared to a section of small bowel showing villous atrophy caused by celiac disease.
“In this editorial, we describe some of the reasons people without celiac disease adopt a gluten-free diet,” says Dr. Lebwohl. “In some scenarios, this might be treating NCGS, a syndrome for which we do not have a solid understanding and for which there is no proven test. In other scenarios, gluten is avoided because of an unproven notion that it is intrinsically unhealthy.”
Dr. Jossen says that there are many people who place themselves on a self-prescribed gluten-free diet who may have something else that they haven’t been tested for that can be improved without the diet. “I think it’s really important to disseminate knowledge about what the actual science is here because there are so many patients coming in to providers’ offices saying ‘Oh I’m gluten sensitive.’ But what does that mean? That’s what we tried to address in the article,” she says.
Whereas those with celiac disease have been diagnosed using serologic and histologic biomarkers, NCGS is challenging to measure or confirm in clinical practice. “The data suggest that the term NCGS used to describe the population with perceived gluten sensitivity in the absence of diagnosed celiac disease is a misrepresentation of the true nature of this syndrome. Rather, there is considerable heterogeneity in this population in terms of dietary triggers that should be accounted for when diagnosing and counseling patients,” the authors wrote in the editorial.
The treatment for celiac disease is straight-forward: a long-term strict gluten-free diet. “For people who do not have celiac disease but who report digestive relief when they are on a low-gluten or gluten-free diet, there is substantially more latitude in terms of the precautions one must take,” says Dr. Lebwohl.
If there is suspected celiac disease, Dr. Jossen says its important that patients do not remove gluten from their diet. “All of our celiac disease testing 100 percent relies upon gluten being in the diet,” Dr. Jossen says. “So, if you suspect celiac disease in a patient, do not let them remove gluten from their diet. Get them to a gastroenterologist. It is always a challenge to sit with a patient and tell them about needing to reintroduce gluten for several weeks before I can make an accurate diagnosis.”
Ongoing NewYork-Presbyterian Research in Celiac Disease
The Celiac Disease Center at Columbia University is engaged in a diverse array of clinical research, from brief survey-based studies to multicenter clinical trials of non-dietary therapies that may be used in addition to, or instead of, the gluten-free diet.
Dr. Lebwohl’s recent research includes:
- A nationwide population-based matched cohort study looking at celiac disease and risk of microscopic colitis. The findings, which were published in the United European Gastroenterology Journal, found that people with celiac disease are at an increased risk of developing microscopic colitis, a cause of chronic diarrhea that requires its own treatment in addition to a gluten-free diet.
- A review of the medical literature on the unique considerations that providers must take when managing celiac disease in elderly individuals. Published in Current Treatment Options in Gastroenterology, the review acknowledged that although understanding of celiac in the elderly continues to advance, significant knowledge gaps persist and “large, prospective studies are needed to further characterize the disease’s pathogenesis, complications, and management in older adults.”
“We are also deeply involved in studying new technologies that are available for people with celiac disease, such as portable gluten sensors and gluten detection test strips that may be useful to people as they navigate this diet,” says Dr. Lebwohl.
Additionally, the team at Columbia is very focused on improving the quality of life in patients with celiac disease. In a research study looking at factors associated with maladaptive eating behaviors, social anxiety, and quality of life in adults with celiac disease, Columbia investigators found that 39% of adults with celiac were afraid to kiss their partners for fear of contamination. Dr. Jossen says that they are in the process of conducting a follow-up study to evaluate this risk by measuring gluten in saliva following a kiss. “While the study will be conducted in adults, we are confident the results will also apply to our adolescent patients,” she says.