Two studies from Europe uncover gaps in knowledge about diagnosis, follow-up and the gluten-free diet
By Amy Ratner, Director of Scientific Affairs
Gaps in knowledge about celiac disease among doctors and other healthcare providers are revealed in two recent European studies.
In the first, results of a questionnaire filled out by 1,400 physicians from five central European countries found that knowledge about celiac disease was unsatisfactory. On average, only half of the questions were answered correctly by physicians, including general practitioners, pediatricians, and pediatric and adult gastroenterologists. People with celiac disease were also surveyed and did only slightly better on average than healthcare providers.
The second study, done by Polish researchers, found that healthcare providers largely don’t realize that people with celiac disease on a gluten-free diet are still at risk for nutritional deficiencies. Nearly 50 percent of more than 400 doctors, nurses, dietitians and medical students surveyed said people with treated celiac disease are not at risk of nutritional deficiencies.
Taken together the studies paint a discouraging picture of how well celiac disease is understood in the medical community.
Meanwhile, in the United States, it appears the most recent study of physician awareness of celiac disease was done in 2005. Daniel Leffler, MD, a gastroenterologist at Beth Israel Deaconess Medical Center and medical director of clinical science at Takeda Pharmaceutical Company, said an update would be worthwhile. Meanwhile he suspects that clinicians in the United States may not fare any better than their counterparts in Central Europe. Leffler noted that, anecdotally, more blood tests for celiac disease diagnosis are being ordered by physicians, but misdiagnosis and poor follow-up in celiac disease continue to be a problem.
In the study based on questionnaires, published in the Journal of Pediatric Gastroenterology and Nutrition, doctors were asked about epidemiology, clinical presentation, diagnostics, treatment and follow up. Pediatric gastroenterologists had the highest score, about 70 percent, and made up the largest group of respondents. Study authors attributed this to greater awareness of the burden of celiac disease and to greater impact of European Society for Pediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) guidelines.
No one answered all the questions correctly, according to the study, which included healthcare professionals from Croatia, Germany, Hungary, Italy and Slovenia.
Most physicians scored lowest on questions about diagnosis. This is “especially worrisome” among internal medicine gastroenterologists in particular, the study authors wrote, because they should be well-aware of diagnostic options.
Additionally, the study notes concern about low scores in epidemiology and clinical presentation questions among primary care physicians, as they are the first point of contact for people who potentially have celiac disease.
The highest number of correct answers was in the treatment and follow-up section of the questionnaire. Healthcare providers who have a family member or friend with celiac disease scored significantly higher compared to the others, the authors noted, saying this demonstrates that informal learning about celiac disease can play a role.
Knowledge about celiac disease decreased the older physicians were, the study says, meaning younger doctors know more about the disease and recognize those who potentially have it. “Poor knowledge among healthcare providers leads to celiac disease being underdiagnosed and adds to the long diagnostic delays that were observed in many studies,” the authors wrote.
Children have shorter delays in diagnosis, according to an earlier study done by the same researchers. This could correlate to the satisfactory knowledge demonstrated by pediatric gastroenterologists found in the current study, they wrote.
In the earlier study done in the United States, only 30 percent of about 130 Southern California primary care physicians surveyed by UCLA Medical Center researchers knew that it was common for celiac disease symptoms to begin in adulthood. While 90 percent knew diarrhea was a symptom of celiac disease, other symptoms were less well-known. Abdominal pain was recognized by about 70 percent, fatigue about 55 percent, anemia and osteoporosis 45 percent, and depression and irritability 24 percent.
Like the Central European study, the age of healthcare providers also impacted their knowledge about the potential nutritional deficiencies of the gluten-free diet in the study by researchers in Poland, published in the journal Nutrients.
“An unexpected result obtained in the present study was a low level of knowledge regarding nutritional deficiencies among the healthcare providers who had a longer period of experience in the field—doctors who worked in the field for greater than ten years had a 70 percent lower chance of having an acceptable level of knowledge than those who worked in the field for less than ten years,” the study says. “This observation is particularly worrying given the fact that three-quarters of the health care providers surveyed cared for patients with celiac disease.”
Dietitians were the most aware of the potential for nutritional deficiencies, at 82 percent, though dietitians made up the smallest group of respondents. Only about 50 percent each of doctors, nurses and medical students recognized the dietary risk for treated celiac disease patients.
Overall, only 10 percent of respondents rated their knowledge of the gluten-free diet as sufficient, with the largest portion again being dietitians and dietetic students. Based on survey results, three times this amount actually demonstrated sufficient knowledge. More than 90 percent recommended consultation with a dietitian before someone with celiac disease starts a gluten-free diet. They also recommend that doctors who have been out of medical school for a longer period keep up with continuous education so they are up-to-date and able to provide better care for their celiac disease patients.
“Our results indicate a lack of confidence in gluten-free diet counseling competence among healthcare providers,” the authors wrote. They call for medical education to include instruction about the appropriate composition of the gluten-free diet, not just about diagnosis.
The online survey asked 12 questions about the content of macronutrients and micronutrients in a gluten-free diet and the impact of the diet on the health of patients with celiac disease. Carbohydrates, proteins and fats are macronutrients, which are needed in large quantities. Micronutrients are the vitamins and minerals vital to healthy development, disease prevention and wellbeing.
More than 80 percent of healthcare providers who filled out the survey perceived the gluten-free diet as healthy, and knowledge was lowest regarding the risk in celiac disease of being overweight or obese. The perception of the gluten-free diet as healthy most likely explains why healthcare providers don’t think those with celiac disease are at risk of gaining weight, the authors suggest.
They note that the survey was limited to Polish healthcare providers and caution about applying it to the global understanding of nutritional deficiencies of the gluten-free diet. However, they suggest that medical training is similar in many Western countries.
The study from Central Europe also surveyed the celiac disease knowledge of about 2,300 patients and caregivers who scored an average of about 56 percent.
Nearly 20 percent had a score greater than 70 percent. One patient answered all the questions correctly. The highest number of correct answers related to treatment and follow-up, with more 84 percent answering more than half of the questions correctly. There were significant differences between participants based on what country they lived in, the study says.
Additionally, patients and caregivers who associated with a celiac disease advocacy group scored higher compared to those who did not. Patients who were diagnosed less than five years ago scored higher than those who had been diagnosed more than 10 years ago.
Parents of children with celiac disease were more knowledgeable than adults with celiac disease.
“The knowledge of healthcare providers and celiac disease patients is not satisfactory,” the study concludes.
Both recent studies call for improved education for medical professionals about celiac disease and the gluten-free diet. The Central European study especially emphasizes this need for primary care pediatricians and general practitioners.
The study authors suggest an online learning program for patients, caregivers and healthcare providers as one way to increase knowledge about celiac disease. “Better knowledge will effectively reduce the number of unrecognized patients and unnecessary diagnostic delays and will improve the quality of patient care and reduce healthcare costs in Central Europe,” they wrote.