Racial Disparities in Celiac Disease Research, Testing, Diagnosis, and Support
Published June 2021
Over the years, celiac disease has been perceived as an autoimmune disorder mostly affecting Caucasians, particularly people of European descent.
In recent years, researchers have pointed out a potential bias in earlier celiac disease studies that either failed to include minorities in the research or didn’t delve more deeply into racial disparities in celiac disease testing.
Based on studies and reports from the last few years, some researchers have stated that minorities – Blacks, Asians, and Hispanics – may be:
- Less likely to be included in celiac disease studies, causing an inherent lack of relevant research data.
- Less likely to be tested for celiac disease because of the perception of low prevalence in minority populations.
- More likely to adopt a gluten-free diet without a celiac disease diagnosis, but also may not stick to it as diligently because there is no formal diagnosis.
- More likely to experience barriers to health insurance and lack of access to healthcare where testing for celiac disease is considered and implemented.
Addressing these discrepancies is not simple. Recognizing the problem is a step in the right direction.
Global prevalence of celiac disease includes multi-ethnic populations
In a 2018 review of celiac disease studies, the authors of Global Prevalence of Celiac Disease: Systematic Review and Meta-analysis estimated the worldwide prevalence rate of celiac disease to be: 0.4% in South America, 0.5% in Africa and North America, 0.6% in Asia, and 0.8% in Europe and Oceania.
While the prevalence rate of celiac disease is higher in Europe and Oceania, the numbers are not insignificant in Asia, Africa, or South America. This global breakdown does not address the multi-racial and multi-ethnic makeup of North America, particularly the United States. Also of note is that Oceania is partly comprised of countries with Asian (non-Caucasian) populations.
Limitations are skewing the data around minorities and celiac disease
Some perspectives have changed in terms of the way researchers look at the prevalence of celiac disease beyond Caucasian populations. More needs to be done to address racial disparities in celiac disease research.
In 2006, the authors of Celiac disease in African-Americans pointed out that “Celiac disease is generally under diagnosed in the United States, and it is unclear whether the disease is encountered in ethnic minorities.” Their findings showed, however, that “celiac disease occurs in African-Americans and may well be underdiagnosed. Special attention needs to be given to methods that encourage adherence to the diet in minority groups.”
In a 2015 article, Celiac Disease and the Forgotten 10%: The ‘Silent Minority,’ the author, Benjamin Lebwohl, MD, MS, stated, “We have known for more than a decade that celiac disease (CD) is present in nearly 1% of individuals in the United States (US), but we know less about the prevalence of CD among racial and ethnic minorities in this country.”
In the same article, Lebwohl references the “landmark multicenter screening study” published in 2003 by Dr. Alessio Fasano, et al. titled, Prevalence of celiac disease in at-risk and not-at-risk groups in the United States: a large multicenter study. In the study, the prevalence of celiac disease was found to be “highest in non-Hispanic whites (1.08%) and was much lower in Mexican-Americans (0.23%), other Hispanics (0.38%) and non-Hispanic blacks (0.22%).”
According to Lebwohl, this study was the “first racially and ethnically stratified national CD prevalence study in the U.S.,” but it mistakenly concluded that celiac disease “is significantly less common in non-Caucasian populations.” Lebwohl points out that “under-diagnosis of CD in other groups can occur if CD is assumed to only affect Caucasians.”
Lebwohl goes on to say, “Indeed, there is evidence that this erroneous assumption occurs in clinical practice, with resultant under-diagnosis of CD among non-Caucasian individuals. An analysis of the Clinical Outcomes Research Initiative National Endoscopic Database found that, among patients undergoing upper endoscopy for iron deficiency, anemia, diarrhea, and weight loss (all potential manifestations of CD), only 43% underwent duodenal biopsy, and that biopsy was less likely to be performed in Black or Hispanic patients.”
Lebwohl concludes with the following call to action:
“Given the attendant morbidity associated with untreated CD, it behooves us to send a clear message: CD is common, potentially serious, and is present in Caucasians as well as non-Caucasians.”
Translation: Minorities can have celiac disease, too. One of the reasons they are less likely to be considered for celiac disease testing and treatment due to false assumptions in previous studies.
The need for change in approaches to celiac disease research and diagnosis
If the assumption within the medical community is that celiac disease is a “Caucasian” disease, then minority racial and ethnic groups may be more likely to be left out of research and testing, leading to under-diagnosis. The lack of data on the prevalence of celiac disease in minorities should be a wake-up call to the research community to do more to include minorities in large studies and look into conducting minority-specific ones, as well.
Organizations that educate people about celiac disease should be more pro-active about providing culturally-appropriate educational and support resources to all racial and ethnic populations. GIG is committed to initiatives related to this issue. More should also be done to educate the medical community to expand the way they assess, test, and diagnose celiac disease in minority patients.
Once a problem is recognized and acknowledged, change can happen. Minorities with celiac disease should — and can — be better served with more inclusion in studies, access to comprehensive medical care and celiac disease testing, and access to appropriate supports and resources.
Disclaimer: The information on this website is for educational purposes only. Consult your healthcare team when considering this information.
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