12 Little Known Facts About Celiac Disease

While celiac disease is a common genetic disorder, few people know much – if anything – about it. In this post, I’ll share 12 little-known facts about celiac disease. This post contains affiliate links. Please see my disclosures and disclaimers.

Did you know that one in every 100 Americans, or three million Americans, have celiac disease? The kicker is that most people who have celiac disease don’t know it and have yet to be diagnosed.

Celiac disease is an autoimmune disease brought on by the consumption of gluten, a protein found in wheat, rye, and barley, in people who are genetically predisposed to the disorder.

Unfortunately, the gluten-free diet has become a trendy and fad diet, and the diet is followed by millions of people who do not have a genetic disorder or a legitimate gluten intolerance.

The gluten-free “trend” has led to widespread misinformation and, at times, justification for not having to take the prescribed gluten-free diet seriously.

While many people have heard of celiac disease, few people truly understand the depths of the disease. Today, I’m sharing 12 interesting facts about celiac disease to help shed light on this life-changing disease that affects millions of people worldwide.

(1) The Sahrawi People Have the Highest Incidence of Celiac Disease

Studies show that the Sahrawi people of Western Sahara in Africa have the highest incidence of celiac disease. In fact, 5.6 percent of the Sahrawi population is said to be afflicted with celiac disease.

The reasons for the high celiac rates in the Western Sahara are unknown. However, some experts say it could be the change in the Sahrawi’s diets. The Sahrawi people once depended on camel milk and meat for substance, but they have since adopted a more Western diet over time.

The second highest incidence of celiac disease in the world occurs in Finland and Sweden, where 2-3 percent of the population is afflicted. This is higher than the worldwide average of 1 percent.

People from the Punjab region of India constitute the ethnic group in the United States with the highest prevalence of celiac disease, according to research published in Clinical Gastroenterology and Hepatology.

(2) Celiac Patients Are Not “Allergic” to Gluten

People with celiac disease are not “allergic” to gluten; rather, they have an autoimmune disease in which their body’s immune system mistakenly attacks the small intestine every time they consume gluten. In other words, an autoimmune disease is not an allergy.

Gluten is a protein in wheat, and people can have a “wheat allergy,” but they can’t be allergic to gluten, per se.

People who don’t have celiac disease or a wheat allergy who cannot tolerate gluten have a disorder known as non-celiac gluten sensitivity (NCGS) or gluten intolerance. Some experts say NCGS is a bit of a misnomer, and it should be called non-celiac wheat sensitivity.

(3) Bananas Were Once Used to “Cure” Celiac Disease

Today, we know that celiac disease is an autoimmune disorder triggered by the consumption of gluten, but in the early 1900s, celiac disease was seen as a childhood nutritional disorder cured by eating primarily bananas, along with milk, cottage cheese, meat, and vegetables.

Parents would leave their children with Dr. Sidney Haas in California for six months to treat their children. The children would heal, and Dr. Haas would declare that child “cured” of celiac disease. Dr. Haas treated more than 600 children with his high-caloric, banana-centric diet.

We now know it wasn’t the “bananas” that helped these children heal; it was the cessation of gluten that made them better. We also know that there is no cure for celiac disease – as it’s a lifelong affliction that can only be managed by a strict gluten-free diet.

Unfortunately, many of these “banana babies” went on to eat gluten again, reignite their prior ailments, and only later in life discovered that they were never really “cured” from celiac disease. Read more in NPR.

Can bananas cure celiac disease? This was once (falsely) believed to be the case! #celiacdiseaseawarenessmonth #celiacdisease Click to Tweet

(4) Some Patients Exhibit No Symptoms

While there are more than 200 symptoms and conditions potentially related to celiac disease, according to the University of Chicago Celiac Disease Center, many people with celiac disease have no visible symptoms at all.

In a landmark study on the prevalence of celiac disease, a research team, which included the leading celiac disease doctor in the country, Dr. Alessio Fasano, found that 60 percent of children and 41 percent of adults diagnosed with celiac disease during the study were asymptomatic or had silent celiac.

This research is important as it means someone may have celiac disease without knowing it – and they could slowly be damaging their bodies and creating an environment that is ripe for more serious diseases and conditions later in life. 

(5) It Takes an Average of Four Years to Get Diagnosed

According to research published in the American Journal of Gastroenterology, it takes an average of four years for a symptomatic person to be formally diagnosed with celiac disease.

Unfortunately, such delays can dramatically increase a person’s risk of developing other life-threatening health issues and autoimmune diseases.

It takes an average of four years for a symptomatic person to be formally diagnosed with celiac disease. #celiacdisease #celiacdiseaseawarenessmonth Click to Tweet

(6) Celiac is One of the Most Common GI Disorders, Yet the Least Funded

In 2017, a team of researchers published a report in Gastroenterology regarding how the National Institutes of Health, a public agency that decides how federal money is spent on medical research, makes spending decisions for gastrointestinal research.

Researchers found that celiac disease, which affects one percent of Americans, consistently received the lowest amount of research dollars (about $15.4 million over five years).

On the other hand, researchers found that Crohn’s disease, which has the second lowest prevalence of all the GI conditions included in the analysis and afflicts about 0.25 percent of the American population, received the highest amount of funding ($77.5 million over the same five-year period).

Researchers also found that the number of research grants awarded to Crohn’s disease (about 40 per year) was much higher than those awarded to celiac disease research (about eight grants per year).

Editor Note: I know this can be tricky to discuss because one disease shouldn’t be considered more important than the other. However, I understand other factors besides profitability, such as quality of life for the patient, the seriousness of the condition, and alternative treatment options, are taken into account when funding decisions are made, and I don’t make light of research funds spent on researching other serious GI diseases.

(7) Celiac Disease is on the Rise Worldwide

A 2015 report published in the International Journal of Recent Scientific Research stated that the incidence of celiac disease worldwide has increased by 9.8 percent per year over the past 60 years. This figure shows no signs of slowing as diagnostic tools improve (including at-home testing tools) and awareness for celiac disease grows.

Researchers noted that Canada, Scotland, and Spain experienced the highest percent incidence surges while Estonia, the United States, and New Zealand had the lowest growth rates. These observations “point to a stronger influence of environmental factors as opposed to genetic factors on celiac disease development.”

(8) Celiac is the ONLY Autoimmune Disease with a Known Genetic Trigger

According to Dr. Tom O’Bryan, in his book, The Autoimmune Fix, celiac disease is one the most researched autoimmune diseases in the world and the only autoimmune disease in which the environmental trigger (gluten) has been identified. 

(9) People Can Carry a Celiac Gene but Not Have Celiac

Genes rarely cause disease; instead, they show us where there may be a predisposition to a disorder.

While 99 percent of people with celiac disease carry the HLA DQ2 or DQ8 genes, not everyone who carries the genes goes on to develop celiac disease. The genetic markers only mean that a person is genetically predisposed to celiac disease.

Again, genes alone do not cause disease. In order for someone to have celiac disease, they must be eating gluten and experience some intestinal permeability. These factors may “turn on” the celiac disease genes in genetically predisposed people.

Read my article, What Causes Celiac Disease? to learn more about what triggers celiac disease.

(10) People with Celiac May Have Heightened Sensitivities to Other Foods

Unfortunately, many people with celiac disease have heightened sensitivities to other foods.

For example, 44 percent of people with celiac disease are also sensitive to corn, according to this study, and about 50 percent of people with celiac disease also have a lactose intolerance, according to this research.

(11) No Human Has the Enzyme to Fully Digest Gluten

A team of researchers, including leading celiac disease physician Dr. Alessio Fasano, found that gluten consumption (via wheat) causes intestinal permeability in every human being. This research was published in Nutrients. 

Usually, damage caused by gluten consumption will resolve itself, but for people with celiac disease or gluten sensitivity, that damage chips away at the lining of the small intestine. The small intestine is responsible for feeding every organ and cell in the body, so when it’s compromised, many other systems inside the body become compromised as well.

Furthermore, gluten offers no nutritional value to humans. Humans eat it and excrete it, according to Dr. O’Bryan. “You can go a lifetime without eating gluten and have no adverse side effects,” he says in his bestselling book on gluten disorders, The Autoimmune Fix.

(12) Healing is Difficult; Sometimes Unachievable

One popular celiac disease study concluded that “mucosal recovery was absent in a substantial portion of adults with celiac disease after treatment with a gluten-free diet.”

The researchers found that only 34 percent of adults experienced mucosal recovery after two years on a gluten-free diet. At five years, researchers say only 66 percent achieved full mucosal healing.

Mucosal refers to the lining of the small intestine, which is damaged in people with celiac disease who continue to consume gluten.

The researchers say full mucosal recovery is important because it decreases a patient’s risk of mortality. Celiac patients with persistent mucosal damage experienced refractory celiac disease, lymphoma, liver carcinoma, and Streptococcal infections.

People with celiac disease should take pause, perhaps realizing that a gluten-free diet alone may not fully resolve symptoms or control inflammation.

Editor’s Note: I did more than swap regular cupcakes for gluten-free cupcakes to heal my body and put my celiac disease into remission.

Suspect Celiac Disease?

If you or someone you love suspects they might have celiac disease, please get tested for the disorder.

You might also enjoy these articles:

• 54 Interesting Stats About Celiac Disease
• 11 Things I Did to Put My Celiac Disease Into Remission
• What is Celiac Disease?
• Is Gluten Intolerance a Precursor to Celiac Disease?