Did you know that 1 in 133 Americans has celiac disease?

That’s roughly 1% of the population. And while that may not sound like much, it makes celiac disease one of the most common genetic diseases.

If we look beyond the US, that number increases even more. 1 in 100 people have celiac disease worldwide. And in recent years, those numbers are increasing rapidly.

According to beyondceliac.org,

“The rate of new diagnosis of celiac disease has increased 7.5 percent every year for the past few decades throughout the industrialized Western world, a new study by Lebwohl and colleagues from Canada, China and Sweden found.”

And because we’re always working to understand how well our community of Achievers represents the population as a whole, we wanted to know how many Achievement members are currently living with this rapidly growing autoimmune disease.

We asked Achievers if they’d been diagnosed with celiac disease.

What did we discover?

Over 21,000 Achievers responded to the question. And over 14 percent of those who responded answered yes.

That means, out of the 3 million Americans living with celiac disease, 3,000 of them are Achievers!

Of course that isn’t an accurate reflection of the population as a whole, but it is interesting to see the numbers and how Achievers align with the larger community.

What is Celiac Disease

According to the National Institute of Diabetes and Digestive and Kidney Diseases (NIH),

“Celiac disease is a chronic digestive and immune disorder that damages the small intestine.”

It is a chronic, genetic, autoimmune disease that often leads to other diseases, and — if left untreated — results in increased hospitalizations and, in some cases, death.

Basically, in a person with celiac disease, the body sees gluten (a protein found in many common foods) as a threat. The immune system attacks the protein, and the small intestine is damaged in the process.

Over time, this leads to damage of other organs as well and numerous other serious health conditions.

This infographic from beyondceliac.org does a great job summarizing the condition.

Celiac at a Glance

What it’s Like to Live with Celiac Disease

For many, living with celiac requires nothing more than a change in diet. Technically.

But it’s not that simple in reality.

Today, it’s easier than ever to find gluten-free options, but it still means a total change in lifestyle. It means limited choices, embarrassment, and often isolation.

In fact, the social and psychological impacts of managing celiac disease are staggering. Often people with celiac choose to risk exposure rather than take on the burden of avoiding gluten. This leads to illness, hospitalization, increased medical expenses, and death.

Eating out is especially difficult. More often than not, individuals living with celiac disease have very limited options when dining out.

Like those with food allergies, even tiny traces of gluten can be enough to cause serious damage, so many restaurants are unable or unwilling to accommodate someone with celiac disease at all.

Those who can often have limited options, maybe a salad with no croutons or a burger with no bun. The risk of cross contamination is high, though due to shared prep areas and cooking spaces.

Often individuals with celiac disease steer clear of social eating situations in order to avoid the weight of being a “burden.”

According to The Celiac Disease Foundation,

“The treatment burden of celiac disease is comparable to end-stage renal disease, and the partner burden is comparable to caring for a patient with cancer.”

Luckily, there are resources and advocates. More and more gluten-free options are available every day it seems. And, with education and acceptance, we can start to relieve some of the strain that comes with managing and living with this chronic condition.

infographic from Beyond Celiac addressing the impact of celiac as an invisible illness

Resources

Beyond Celiac

The Celiac Disease Foundation

National Celiac Association

Mayo Clinic

Celiac.com


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