How Common Is Celiac Disease?

Celiac is very common, but it's also very underdiagnosed

How common is celiac disease?. Martin Barraud/Getty Images

Celiac disease is actually quite a common condition, but you wouldn't necessarily realize how common it is because so many people who have it haven't been diagnosed. Because celiac is a genetic condition — in other words, you need to have the "right" genes to develop it — the rate of celiac disease varies widely from country to country. 

In the United States, about one in every 133 people have celiac disease, which means approximately 2.4 million people have the condition.

However, more than 2 million of these haven't yet been diagnosed, so they don't know they have the condition and therefore need to follow the gluten-free diet.

People with mainly Caucasian ancestry seem to have a much greater risk of developing the condition than those who have mainly African, Hispanic or Asian ancestry.

For example, one large U.S.-based study found that 1% of non-Hispanic whites had celiac, compared with 0.2% of non-Hispanic blacks and 0.3% of Hispanics.

Another study found very high rates of celiac — around 3% — among people with South Indian (Punjab) ancestry, and low rates in those with East Asian, South Indian, and Hispanic ancestry. People with Jewish and Middle Eastern ancestry had rates of celiac disease that were about average for the U.S., but those with Ashkenazi Jewish ancestry had higher rates of celiac, while those with Sephardic Jewish ancestry had lower rates.

Surprisingly, that same study found similar rates of celiac in both men and women. Previous research had suggested that celiac is much more common in women.

Celiac disease is considered rare in countries where most people are not non-Hispanic white, although researchers also believe that its incidence is growing worldwide.

What Makes My Risk Higher or Lower?

In two words: your genes.

Celiac disease has been strongly linked to two particular genes: HLA-DQ2 (the primary celiac disease gene) and HLA-DQ8. If you carry one copy of one of those genes, your risk is above that of the general population. If you carry two copies, your risk is higher still.

Of course, just carrying the gene doesn't mean you'll definitely develop celiac (in fact, the odds are still against it).

The so-called "celiac genes" are pretty common, especially if you have Caucasian ancestry, and only between 1% and 4% of those who have the genes will go on to develop celiac. There are other factors in play, many of which medical researchers haven't determined yet.

I Haven't Had A Gene Test - What's My Risk?

Even if you don't know what genes you carry, you may be able to judge your own risk based on your family's medical history, since those with a close relative who's been diagnosed also are at higher risk for celiac.

If you are a first-degree relative — parent, child, brother or sister — of a person with celiac disease, research shows you have a 1 in 22 chance of developing the disease in your lifetime. If you are a second-degree relative — aunt, uncle, niece, nephew, grandparent, grandchild or half-sibling — your risk is 1 in 39.

Regardless of your personal risk for celiac disease, medical research shows it's a common (although underdiagnosed) genetically linked medical condition. In fact, according to the Wm. K. Warren Medical Research Center for Celiac Disease Research in San Diego, celiac disease is twice as common as Crohn's disease, ulcerative colitis and cystic fibrosis combined.

(Edited by Jane Anderson)

Sources:

Choung RS et al. TTrends and racial/ethnic disparities in gluten-sensitive problems in the United States: findings from the National Health and Nutrition Examination Surveys from 1988 to 2012. The American Journal of Gastroenterology. 2015 Mar;110(3):455-61.

Fasano A et al. Prevalence of celiac disease in at-risk and not-at-risk groups in the United States: a large multicenter study. Archives of Internal Medicine 2003;163:286-92.

Krigel A et al. Ethnic Variations in Duodenal Villous Atrophy Consistent with Celiac Disease in the United States. Clinical Gastroenterology and Hepatology. 2016 May 4. pii: S1542-3565(16)30145-8.

National Institutes of Health. Accessed: February 2, 2009. http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/index.htm#common

Rubio-Tapio A et al. The prevalence of celiac disease in the United States. The American Journal of Gastroenterology. 2012 Oct;107(10):1538-44.

University of Chicago Celiac Disease Center. Accessed: February 2, 2009. http://www.uchospitals.edu/specialties/celiac/

University of Maryland Center for Celiac Research. Accessed; February 2, 2009. http://www.celiaccenter.org/celiac/faq.asp#common

Wm. K. Warren Medical Research Center for Celiac Disease Research. Accessed: February 2, 2009. http://celiaccenter.ucsd.edu/learn_more.shtml

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