Nov. 18, 2022 — Boston dietitian Katarina Mollo has virtually no memory of life without celiac disease. Diagnosed at age 4, Mollo has been on a gluten-free diet for 41 years that she says has kept her healthy and may also be why she hasn’t developed any other autoimmune diseases. It’s also played a part in her thinking about screening patients with the same disorder.
“I think [doctors] should definitely be screening people with celiac disease for autoimmune disorders, especially if they see things like anemia or if a child has dropped on the growth chart and has nutrient deficiencies,” says Mollo, whose daughter also has the disease. “I would recommend that they see someone who specializes in celiac disease so they can get monitored and have regular follow-up checks for nutrient deficiencies and other autoimmune disorders.”
Mollo’s views on screening are echoed by many celiac disease specialists and doctors. They cite multiple studies that have found people with the disease face higher risks for diabetes, thyroid conditions, arthritis, and other autoimmune disorders.
Gastroenterologist Alessio Fasano, MD, with Massachusetts General Hospital, says there has been a “shift in the paradigm in thinking” about cross-screening for celiac and autoimmune disorders. As result, he believes the answer to the question of whether to routinely do so is a no-brainer.
“The bottom line is if you have CD, it [should be] routine that during your annual follow-ups you check for the possibility of the onset of other autoimmune disease. And people with other autoimmune diseases, like type 1 diabetes, should also be screened for CD,” says Fasano, professor of pediatric gastroenterology at Harvard Medical School and professor of nutrition at the Harvard T.H. Chan School of Public Health. “This is what we call good clinical practice.”
Other celiac disease specialists differ on the need for universal cross-screening but agree that, at least in some cases, people with one autoimmune disorder should be tested for others.
Jolanda Denham, MD, a pediatric gastroenterologist affiliated with Nemours Children’s Hospital in Florida, routinely recommends screening her patients with CD for certain autoimmune disorders — such as type 1 diabetes and autoimmune thyroid and liver diseases — even though medical organizations have not developed clear consensus or standard guidelines on cross-screening.
“There currently is no evidence to support the screening of celiac patients for all autoimmune and rheumatologic disorders,” she says. “[But] it is true that celiac disease is an autoimmune disorder, and as such, there is a definite increased risk of these disorders in patients with celiac disease and vice versa.”
Echoing Denham, New York gastroenterologist Benjamin Lebwohl, MD, president of the Society for the Study of Celiac Disease, urges doctors to look beyond consensus guidelines and to err on the side of caution and make the best decisions for their patients on a case-by-case basis.
“Given the increased risk of certain autoimmune conditions in people with celiac disease, it behooves physicians to have a low threshold to evaluate for these conditions if any suggestive symptoms are present,” says Lebwohl, director of clinical research at the Celiac Disease Center at Columbia University.
“Whether to screen for these conditions among people who are entirely without symptoms is less certain, and there is no consensus on that. But it is reasonable and common to include some basic tests with annual blood work, such as thyroid function and a liver profile, since both autoimmune thyroid disease and autoimmune liver disease can be silent early on and the patient would potentially benefit from identification and treatment of these conditions,” he says.
Both the American Diabetes Association and the International Society for Pediatric and Adolescent Diabetes recommend that people with diabetes be screened for celiac disease years after diagnosis, says Robert Rapaport, MD, a pediatric endocrinologist with Kravis Children’s Hospital in New York City. But in a publication from last year, he and colleagues found that this wasn’t occurring, which prompted them to recommend yearly screening.
“There is a consensus that in children with type 1 diabetes we screen them for other autoimmune disorders, specifically for thyroid disease and celiac disease,” says Rapaport. “But there is no consensus going the other way — for patients with celiac disease what other autoimmune conditions they should be screened for.”
This hasn’t kept some doctors from extending cross-screening efforts to their patients.
“At our center, we screen … for thyroid disease and autoimmune liver disease as part of routine health care maintenance for our celiac disease patients. We discuss symptoms of diabetes and send screening with [blood sugar levels] for anyone who has symptoms,” says Edwin Liu, MD, a pediatric gastroenterologist with Children’s Hospital Colorado and director of the Colorado Center for Celiac Disease.
“It is definitely worth screening for celiac disease in [those with] other autoimmune disorders,” Liu says.
“The symptoms can be very heterogeneous. Diagnosing and treating celiac disease can make a huge impact with respect to symptoms, quality of life, and preventing disease-related complications,” he says.
Celiac Disease at a Glance
Celiac disease is a genetically linked hereditary disease that strikes about 1 in 100 people worldwide, but only about 30% are properly diagnosed, according to the Celiac Disease Foundation.
When people with celiac disease eat gluten — a protein found in wheat, rye, and barley — their immune systems launch an aggressive attack on the small intestine. This assault from within damages the tiny fingerlike projections that line the small intestine called villi) that allow the body to absorb nutrients.
Left untreated, celiac disease can lead to serious health problems, including malnutrition, heart disease, osteoporosis, infertility, liver failure, certain cancers, vitamin and mineral deficiencies, and neurological conditions such as attention deficit hyperactivity disorder.
Celiac disease can develop at any age after people start eating gluten. But is often first noticed in children and teenagers who have gastrointestinal problems or poor growth, often due to malnutrition.
Many studies have linked celiac disease to a variety of other autoimmune disorders, perhaps due to common genetic factors or because celiac disease might lead to such conditions. Researchers have found that people diagnosed with celiac disease later in life are more likely to develop other autoimmune disorders.
Massachusetts General Hospital’s Fasano adds that it is unclear whether celiac disease can lead to other autoimmune disorders or if it’s “genetic destiny” — that is, the genes that put you at risk for it are the same genes that put you at risk for other autoimmune diseases.
“So with the second scenario there’s nothing you can do about it,” he notes. “But if the first scenario turns out to be correct, then you have a target — good compliance with a gluten-free diet. So at least until we have more undisputable proof that this is an untreatable disease that leads to these comorbidities, we have that.”
In addition, Fasano and other doctors interviewed for this story believe people with celiac disease and other autoimmune disorders should be managed by a team of experts who can personalize the care based on the specific needs of the individual patient. These should include specialists, dietitians, mental health counselors, and family social workers, he argues.
“We are on the verge of a revolutionary change in health care,” he says. “By definition, it has to be a multidisciplinary approach to maintain the good health of an individual. Celiac disease is the quintessential example in which the primary care physician needs to be the quarterback of the team, the patient is active in his or her health, and [specialists] not only deliver personalized care but also preventive intervention, particularly the prevention of comorbidities. … That is what we’re going to do.”
For Mollo, the Boston dietitian, the debate over cross-screening is a healthy development that reflects the growing awareness of celiac disease and other autoimmune diseases — and how best to treat people who have them.
“I was born in Sweden and diagnosed with CD as a young child. And when I came here in 2000, I just found it very difficult to have celiac disease in the U.S.,” she says. “The labeling requirements for food were very unclear, you couldn’t find a lot of gluten-free foods in grocery stores and restaurants … and a lot of people, especially medical professions, didn’t seem to be familiar with celiac disease. That’s why I decided I wanted to specialize in this field and became a registered dietitian.
“But since then, it’s gotten better. It’s not perfect; gluten still is not required to be on food labels. But there’s been a big change and I see it every year more and more, with more gluten-free foods coming out … and there’s more awareness with medical professionals.”