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Black people and those with Medicaid and Medicare face disparity in diagnosis of celiac disease

October 7, 2021

When diarrhea and anemia are symptoms, white people and those with private insurance are more likely to get tested and diagnosed

By Amy Ratner, director of scientific affairs

If you are Black or have public insurance and also have symptoms associated with celiac disease or inflammatory bowel disease, your chance of getting proper follow-up for diagnosis is greatly reduced, a recent study found.

Black people and those with Medicaid and Medicare who went to the doctor with iron deficiency anemia and chronic diarrhea had about 90 percent decreased odds of having the appropriate follow-up, concluded researchers from the University of Chicago Medicine section of gastroenterology, hepatology and nutrition and Harvard School of Public Health.

“Our study suggests that patients with celiac disease or inflammatory bowel disease (IBD) may go undiagnosed when they present with iron deficiency anemia and chronic diarrhea, particularly those who are Black or have public insurance,” the study authors wrote.

Racial disparity in celiac disease

Racial disparities in celiac disease and other autoimmune diseases have been found in other research as well, including a 2012 study that found Black patients with diarrhea, anemia, iron deficiency or weight loss were less likely to have a duodenal biopsy than younger people, women and whites. A recent study by researchers from University of Southern California found that Black people and Latinos with multiple sclerosis and other autoimmune diseases experience health disparities such as greater disease severity and faster disease progression than white Americans.

But studies note a lack of evidence regarding celiac disease in Blacks and other non-white ethnicities. Beyond Celiac and the National Minority Quality Forum (NMQF) have partnered to examine and address health inequities in the diagnosis and treatment of celiac disease. Beyond Celiac and NMQF, a leading advocacy organization on issues of health disparity, are investigating the extent of undiagnosed celiac disease, particularly among non-Caucasians, through analysis of Medicare and Medicaid data. The goal is to map celiac disease across the United States to drive diagnosis and ensure clinical trials include a diverse, representative patient population.

In the Beyond Celiac Voices of Celiac Disease project, non-whites with celiac disease have shared stories of being dismissed by physicians who told them they could not have celiac disease because of their race and, thus delaying diagnosis due to race.

Records reveal inappropriate follow-up

In the new study of anemia and diarrhea, researchers examined the health records of people seen at the University of Chicago Medical Center from 2006 to 2017 to find those who had medical codes for both iron deficiency and chronic diarrhea. Records were also reviewed for codes that indicated whether patients with these symptoms had tissue transglutaminase immunoglobulin A (TTG-IgA) testing, as well as testing for iron levels and an ileocolonoscopy, all preferred tests for celiac disease or IBD.

Overall, of 72 patients who had both symptoms but were not diagnosed with celiac disease or IBD, 61—or nearly 85 percent—were not followed-up with proper testing, according to the study, published in the journal Digestive Diseases and Sciences.

About 66 percent of patients who did not receive appropriate follow-up were Black, the study says. About 79 percent were publicly insured. Meanwhile, those who were white and those who had private insurance made up the majority of those who were followed-up with correctly.

When race and insurance status were combined, among those who did not get appropriate follow-up, nearly 80 percent of Black patients had public insurance compared to about 10 percent of white patients. While almost 70 percent of white patients in the group had private insurance, only about 8 percent Black patients did. In the study, public insurance included Medicare, Medicaid, self-pay and the uninsured.

Testing recommendations

The American Gastroenterological Society recommends celiac disease testing for all patients with chronic diarrhea and testing for celiac disease is recommended for all patients with anemia by the British Society of Gastroenterology, the study notes. Additionally, the American College of Gastroenterology recommends blood tests for celiac disease, the study says.

In celiac disease, chronic diarrhea is often a classic presentation, while anemia is less common. In IBD, anemia is one of the most common systemic complications, the study says. However, research shows that the presence and persistence of anemia correlates with disease severity in both celiac disease and IBD, the authors wrote.

“Patients in this study with recurrent and persistent anemia had higher indices of disease activity and more aggressive and disabling disease,” the authors wrote, noting that it is important to test for both celiac disease and IBD when a patient presents with anemia and chronic diarrhea. “Barriers to the identification and early diagnosis of these patients can have a significant impact on disease-related morbidity and mortality.”

Race not criterion for celiac disease screening

Three patients in the study were subsequently diagnosed with celiac disease, two of whom were white and one whose race was unknown. And eight patients were diagnosed with IBD, three of whom were Black, four white and one Asian.

The study authors note a discrepancy in the demographics of those subsequently diagnosed with celiac disease, 66 percent white, and the demographics of those not getting proper follow-up, 65 percent Black. The discrepancy may be the result of celiac disease traditionally being thought of as predominantly affecting those of Caucasian descent, the study says.

“However, the guidelines for work-up of celiac disease, iron deficiency anemia and chronic diarrhea do not use race as a criterion for whether to screen for celiac disease,” the study authors wrote. They point to a 2015 National Health and Nutrition Examination Survey (NHANES) study on racial differences that put the prevalence of celiac disease in non-Hispanic white people at about 1 percent and in Black people at about .4 percent. These numbers support testing of celiac disease irrespective of race, the study says.

The authors conclude that the differences in follow-up found in the study “may be due to structural inequities that have been present in healthcare for decades and result in lower quality of care for minorities and for patients with low socioeconomic status.”

Proposed solutions

Solutions specific to disparities in the workup of patients with anemia and diarrhea outlined in the study include putting in systems so that electronic health records link the diagnosis of the two conditions and flag them for a complete workup with a colonoscopy and celiac disease testing. In addition, communication between primary care providers and gastroenterologists should be improved, the study days.

In the larger picture of promoting healthcare equity, the study authors suggest initiatives of workforce diversity, physician education and communication among physicians. “An important initial step is to increase the diversity of our healthcare workforce, as diversity has been shown to improve patient outcomes and access to care,” the authors wrote. They also call for training to reduce unconscious bias for healthcare providers.

Study limitations

Study limitations include the small sample size, the fact that only a single medical center’s records were used and that errors in documentation of the medical records are possible. It is also possible that some patients who were considered to have inappropriate follow-up may have had testing outside the University of Chicago system. Also, uninsured patients are not routinely seen at the University of Chicago for elective procedures such as a colonoscopy and are typically referred to a county hospital. However, most of the patients included in the study had public or private insurance, the study says. The study also did not take into account whether the higher cost for procedures and the level of insurance coverage a patient had might have influenced their decisions regarding further testing.

“Further studies and targeted interventions are needed to standardize the evaluation of patients who present with iron deficiency anemia and chronic diarrhea to aid in the early diagnosis of these patients and to eliminate disparities in care,” the study concludes.

You can read more about the study here.


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