Celiac Disease: A Rare Disorder on the Rise

Low magnification micrograph of small intestinal mucosa copyright © 2011 Michael Bonert.

by Estella Williams

Prior to five months ago, I had only heard the term “celiac disease” a few times in my life. I never knew anyone who was diagnosed with it, nor did I realize the severity of the condition. I thought celiac disease was nothing more than a gluten allergy, and the only real “inconvenience” of the disease was the need to give up gluten-containing foods such as pizza, pastries, and pasta. On the rare occasions when I overheard someone claiming to have celiac disease, I often assumed they were just “health nuts” who wanted other people to take their self-inflicted gluten-free diet seriously. Little did I know that after three years of feeling increasingly miserable due to heartburn, feelings of excessive fullness, unexplained stomach pain, nausea, and a variety of other symptoms, I would be diagnosed with celiac disease. 

Celiac disease is not as rare as I once believed it to be. On the contrary, at least 1% of the population has a celiac disease diagnosis, and the diagnosis is becoming increasingly common on a year-to-year basis. According to Dr. Jonas Ludvigsson et al., an estimated 30-40% of the worldwide population has a genetic predisposition for celiac disease. The alarming exponential increase in diagnoses each year, combined with the long-term health complications caused by the disease, make this hidden epidemic a concern for everyone.

Celiac disease is an autoimmune disease in which the immune system creates anti-tissue transglutaminase antibodies to attack particles of gluten – a protein found in wheat, barley, and rye –  which it identifies as a foreign invader. While this is often painful and can create distressing symptoms, the most concerning aspect of celiac disease is the irreparable damage being done to the digestive tract and the slew of medical complications that often result. These transglutaminase antibodies ultimately damage the villi – the finger-like projections lining the bowel that absorb vitamins and nutrients – leading to a variety of health concerns, including malabsorption/malnutrition, digestive tract cancers, and infertility, among many others. 

There is currently no cure or medical treatment for celiac disease other than strict adherence to a gluten-free lifestyle to minimize damage to the body caused by gluten. Even when consuming gluten-free foods, celiac patients must be especially careful to avoid consuming trace amounts of gluten resulting from cross-contact and contamination by shared utensils, equipment, and handling. Celiac disease damages the small intestines when the body creates anti-tissue antibodies to attack particles of gluten. Villous atrophy – or damage to the villi – occurs in celiac patients who eat as little as 10 mg of gluten in a 24-hour period, which is equivalent to the amount of wheat flour that would fit on the tip of a pen, or just one crumb of gluten-containing bread. Therefore, to be permitted by the FDA to use the words “gluten free” on the label, foods must contain less than 20 parts per million of gluten (0.002%), which is the highest percentage considered to be safe for celiac patients.

Currently, there are approximately three million people known to have celiac disease in the U.S., and that number is growing daily. According to Dr. Jonas Ludvigsson et al., “the previously described increase in [celiac disease] incidence (0.9 per 100,000 [person-years] in the 1960s, rising to 3.3 per 100,000 [person-years] in the 1990s) has not abated.” Additionally, Ludvigsson et al. report that the incidence of celiac disease has increased from 11.1 per 100,000 person-years in 2000-2001 to 17.3 per 100,000 person-years in 2008-2010. Increasing awareness and improved diagnostic tools are certainly contributing factors to the rising number of diagnoses. According to Dr. Peter Green and Rory Jones in their book Celiac Disease: A Hidden Epidemic: “Until recently, doctors perceived celiac disease as rare. Part of this is self-fulfilling: If doctors think something is rare, they will not go looking for it. Therefore, they will not find it, and so it remains ‘rare.’ If a condition is considered common, doctors will routinely test for it.” Since celiac disease is no longer considered to be “rare,” doctors are increasingly more likely to test for it, and, therefore, more people are being diagnosed with a disease that was once not even considered as a possible problem. 

Furthermore, a simple blood test can now test for tissue transglutaminase IgA antibodies (tTg-IgA). Individuals with elevated levels of tTg-IgA must then confirm a celiac diagnosis through an endoscopy and tissue biopsy in which cells from the small intestines are studied under a microscope to verify the markers of celiac disease. In her article regarding the diagnosis of celiac disease in the West, Amy Ratner writes, “the development of more accurate and cost-effective blood tests for celiac disease in the 1990s is one reason incidence is increasing.” Ratner also cites that the diagnosis of celiac disease is increasing because more patients – some that do not have classic symptoms of celiac disease and/or seem healthy – are being screened, especially when they are considered to be at-risk. While more frequent testing and easier, more cost-effective diagnostics are part of the explanation for the increase in celiac disease diagnoses, other factors also contribute to the ever-increasing prevalence of celiac disease worldwide. 

While a large factor of who develops celiac disease is genetic, there are other factors that can trigger  or “turn on” the gene, causing the onset of celiac disease. An informative article regarding celiac disease in Australia states that, “While 50% of the population carry one or both of these genes, only 1 in 40 of these people (approximately) will get coeliac disease.” Many researchers have questioned what contributing factor – whether it is genetics alone or environmental factors – leads to the onset of this disease. Ludvigsson et al. state:

The rise of [celiac disease] cannot be explained by a change in the underlying genetic makeup of the community. Instead, an environmental factor(s) is likely. Gluten-enriched foods (e.g., pizza, bagels, and high-protein and high-fiber bread) are increasingly ingested in the United States. 

Ratner lists these factors that may trigger celiac disease: “High levels of gluten fed to infants, use of antibiotics in a child’s first year, early childhood infections, and less exposure to microbes early in life resulting in overactive immune responses late in life.” Stress and deteriorating gut health caused by disease and/or medications are additional factors that can contribute to the development of celiac disease. Ludvigsson et al. wrote that they have found “an association between infectious disease (especially gastroenteritis) and [celiac disease],” as well as a trend regarding the “amount, timing, and frequency of gluten consumption.” Furthermore, they cite Ivarsson et al. that “high amounts of gluten increased the risk of [celiac disease],” meaning that anyone who has genes for celiac disease (which is estimated to be 25-50% of the population) is at risk of developing celiac disease if triggered by environmental factors.

 Overall, the increasing prevalence of celiac disease indicates that this autoimmune disorder is not solely an issue of genetics but rather one that can affect a significant portion of our population simply by triggering the onset of the disease in people who have the gene. Ongoing research continues to search for answers about exactly what is causing more people to develop the disease and how those “triggers” are becoming more common in our everyday lives.

 When someone is diagnosed with celiac disease, it is important to follow a strict gluten-free diet in an attempt to reduce the damage done to the digestive tract and the risk of contracting another autoimmune disease; but how does someone know to follow a gluten-free diet if they haven’t  been diagnosed with celiac disease? Undiagnosed celiac disease is particularly dangerous because a person is eating gluten daily and, therefore, causing extensive damage to their digestive system, which can lead to a wide range of health concerns. 

In an experiment conducted regarding the mortality of patients with celiac disease, researchers found that celiac disease “seems to be associated with a doubling of mortality and substantial morbidity compared with that in the general population,” and furthermore, patients with undiagnosed celiac are four times as likely to die when compared to non-celiac individuals. This study researched the increasing prevalence of celiac disease by evaluating three cohorts spanning from 1948 to recent years and found that undiagnosed celiac disease is 4 to 4.5 times more common in the most recent cohort. According to Ludvigsson et al., men are more likely to live with undiagnosed celiac disease than women, meaning that men are at an increased risk for medical complications and/or early death caused by the disease. 

Since my diagnosis, I am far more educated about the facts and research regarding this autoimmune disease. While some may consider celiac disease to be rare because only approximately 1% of the population has been diagnosed, the reality is that a large portion of the population is genetically predisposed. Additionally, the triggers that cause the onset of this disease are becoming more common in our everyday lives, resulting in an increased number of people affected by celiac disease who are at-risk for health conditions. More and more people are at an increased risk for damage to the digestive tract, medical conditions and complications associated with celiac disease, and even early death. The alarming rate at which celiac disease diagnoses are increasing indicates that systemic issues within our food supply chain, destructive habits within our diets, and other factors such as widespread deteriorating gut health are likely contributing factors that are triggering an ever-increasing prevalence of this autoimmune disorder, making it a hidden epidemic. 


Coeliac disease. (n.d.). Coeliac Australia. https://www.coeliac.org.au/s/coeliac-disease

Coeliac Australia. (n.d.). Conditions associated with coeliac disease. https://www.coeliac.org.au/s/article/Associated-Conditions-CD 

FDA. (2021, January 11). ‘Gluten-free’ now means what it says. U.S. Food and Drug Administration. https://www.fda.gov/consumers/consumer-updates/gluten-free-means-what-it-says#:~:text=As%20one%20of%20the%20criteria,using%20valid%20scientific%20analytical%20tools. 

Green, P. & Jones, R. (2020). Celiac disease: A hidden epidemic (4th ed.). William Marrow.

Ludvigsson, J., Rubio-Tapia, A., Van Dyke, C., Melton , L., Zinsmeister, A., Lahr, B., & Murray, J. (2013, May 19). Increasing incidence of celiac disease in a North American population. American Journal of Gastroenterology, 108(5), 818-824. https://doi.org/10.1038/ajg.2013.60

Ratner, A. (2020, February 21). Diagnosis of celiac disease increasing in Western world. Beyond Celiac. https://www.beyondceliac.org/research-news/diagnosis-increasing/#:~:text=The%20 prevalence%20of%20celiac%20disease,not%20measure%20prevalence%2C%20Lebwohl%20said 

Rubio-Tapia, A., Kyle, R., Kaplan, E., Johnson, D., Page, W., Edrtmann, F., Bratner, T., Kim, W., Phelps, T., Lahr, B., Zinsmeister, A., Melton, L., & Murray, J. (2009, April 13). Increased prevalence and mortality in undiagnosed celiac disease. American Journal of Gastroenterology, 137(1), 88-93. https://doi.org/10.1053/j.gastro.2009.03.059

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