If you have been around the celiac disease community for a while you have probably heard the rumblings that celiac is most common in Northern European ancestry, and it is more common in women. New research from Columbia University is changing that notion, making you ask the question, Who gets celiac anyway?
The research, published in Clinical Gastroenterology and Hepatology May 4, 2016, had a huge sample from which to study. Researchers looked at all patients who had duodenal biopsies submitted to a large national pathology database in the U.S. between January 2, 2008 and April 30, 2015. That equated to more than 450,000 patients. The data was all in the form of pre-existing records, there was no direct contact with patients. The goal: to find out the prevalence of duodenal villous atrophy (flattening of villi in the small intestine) among patients of different ethnicities in the U.S., and whether gender distribution varied between these groups The atrophy researchers looked for is consistent with celiac disease.
Celiac disease and ethnicity
The study found in the U.S., people with Punjabi ethnicity (which is rooted in northern India) had the highest rate of atrophy consistent with celiac disease at 3.08%. Generally, North Indian ethnicity was higher than others at 2.04% prevalence. The research also specifically looked at the Jewish population in the U.S. Ashkenazi individuals had a prevalence of 1.83% and Sephardic individuals came in at 1.39%. South Indians, East Indians and Hispanics all had the lowest prevalence. The category of “Other Americans” (which contained 308,000 of the patients in this sample), had a prevalence of 1.83%.
“The notion that celiac disease is a predominantly European condition has long been considered more of a stereotype than actual fact,” Dr. Benjamin Lebwohl from Columbia University explained in an email interview with The Savvy Celiac earlier this month. He is one of the researchers on this study. “The necessary gene for the development of celiac disease (DQ2 or DQ8) is present in many non-European populations.”
He said as early as the 1990s there was evidence of a higher risk of celiac in the Punjabi population. And earlier this year, a study in India confirmed that rates of celiac disease are highest in that region compared to the rest of the country. “Our study, the first to examine these ethnic groups in the United States, found that Americans of Punjab ancestry also carry that risk,” Lebwohl said.
Celiac disease and gender
This study also found no matter what your gender, the prevalence of celiac disease was nearly identical. This was the case across all ethnicities. The idea that celiac disease is a women’s disease, is inaccurate. However, women still get diagnosed with celiac disease more often than men. “Our findings support the notion that [celiac disease] should be considered as a diagnosis in men as often as it is considered in women,” the study says.
But regardless of this research, many medical practitioners think it is a women’s disease and may not look for it in men, which perpetuates the statistic that more women are diagnosed with celiac. “There is definitely a phenomenon that doctors only find a disease if they are looking for it,” Lebwohl said.
“A few years ago, we examined data on upper gastrointestinal endoscopies throughout the U.S. and found that among patients undergoing the procedure who had diarrhea, weight loss and iron deficiency anemia, women were more likely to have an intestinal biopsy than men (Gastrointestinal Endoscopy Journal, Oct. 2012),” Lebwohl explained. “This, to me, is clear evidence that many doctors are under the misguided impression that celiac disease is a woman’s disease. It is self-perpetuating because if women are far more likely to get diagnosed, physicians will not see many men with celiac disease and assume it is less common in that gender.”
Changing the way of thinking
With these two pieces of news, how do we change the way of thinking in the celiac and the medical communities?
Education. When it comes to the ethnicity portion of the study, “Efforts to raise awareness of celiac disease in the U.S. include the message that there are many faces of celiac disease,” Lebwohl said. “But this study provides some numbers behind this notion.”
As for gender and celiac disease, we all need to encourage our men and boys to get tested for celiac if they aren’t feeling well, and then follow through with the gluten-free diet if they test positive. “Many patients with celiac disease who are undiagnosed are experiencing symptoms that can affect day-to-day quality of life,” Lebwohl said. “Ultimately it is up to the patient to get tested (and up to the doctor to test properly), but this often happens because of a concerned spouse or sibling who is knowledgeable about celiac disease and speaks up.”