My Celiac Disease is “Contagious”
How can celiac disease be contagious? It is an autoimmune disease. You can’t “catch” celiac disease, but the number of people with celiac disease is rising. Why?
When I moved back to California15 years ago, neither celiac disease nor the word gluten was a part of pop culture. Now the term “gluten-free” rolls off the tongues of babes without a stutter. Other than my family members, I was the only person with celiac disease that I knew. That changed quickly.
When my daughter started preschool, I was far from shy about trying to gently teach the people at school how to accommodate her. Within the first year of our arrival, two people at the school were diagnosed with celiac disease. Then off to elementary school, the kids went, followed by more discussions with teachers and staff, and two more schoolmates diagnosed. Next in line for a celiac diagnosis was a new friend who had asked me why I wasn’t eating the pizza they all were sharing. The conversation went from there. Then it was a friend of a friend. It was spreading! People were asking what was going on in my town. They told me I must be contagious.
Folks started avoiding me, walking the other way when I came towards them. They started wearing masks. Oh wait, that is the wrong story. In all seriousness, what was going on?
Celiac disease is an autoimmune condition and is not infectious. It can’t spread from person to person. But, the information I was sharing about celiac disease was contagious. The awareness was contagious. Awareness is one reason for the increase in celiac disease. Let’s look at some others.
More Celiac Disease Today
5 possible reasons
In 2003, a study was published that drastically changed how we view celiac disease. Prior to this study, doctors were taught that celiac disease was rare. That it was only was found in 1/10,000 people. The 2003 study proved celiac disease was common, showing up in 1/133 people. Today we know that number is closer to 1/100. That means 3.2 million people in the United States alone, have celiac disease. Unfortunately, only 17 percent of them are diagnosed. That leaves 2.6 million people in the US with celiac disease, that don’t know they have it. It is either misdiagnosed as something else or the symptoms are being normalized by the person with it.
When symptoms go on for prolonged periods, people accept them as normal. If they aren’t on a gluten-free diet because they don’t know they have celiac disease, they are at risk for dangerous consequences. This news is even more distressing because it is a disease that is treatable by diet alone.
In 1997 one of the tests used today to screen for celiac disease was developed. It was faster, cheaper and more accurate than prior tests. This made testing easier and more readily available.
Armed with new information that celiac disease was not rare, doctors started considering celiac more frequently in their patients. The research was also showing that celiac disease doesn’t only cause stomach problems. It can present as headaches, nerve problems, joint pain, anxiety, depression, and more. Celiac disease can show up as any of these symptoms with no GI problems at all! Only 30 percent of people with celiac disease actually have GI symptoms at diagnosis..
Education is still lacking in medical schools. Health care providers still do not know the extensive variety of celiac symptoms. It is rarely considered by doctors without the presence of GI symptoms. This needs to change. Please feel free to send your health care provider the following article if you would like them to learn more.
Increase in Celiac Disease
The incidence of celiac disease is increasing, in line with other autoimmune conditions. The number of cases is rising even when factors such as increased testing and awareness are taken into account.
I have to attribute my “contagiousness” to awareness. Talking to schools, my friends, and their friends is a form of awareness. I also started working with the Celiac Community Foundation of Northern California on an awareness campaign in the San Francisco Bay Area in 2007. We were educating the public and health care providers on the topic of celiac disease and gluten/wheat-related disorders. I have to hope that my conversations with people and our awareness campaigns made a difference.
Researchers,non-profit groups, support groups, bloggers, influencers, and the general public, all play a role in increased awareness. If you or a loved one have celiac disease, every time you teach someone how to cook for you, talk to a chef or manager about your needs, you are educating someone. Your child may be their teacher’s first “celiac kid” but they won’t be the last. If we all speak up, speak kindly and advocate, the numbers of undiagnosed will decrease. Be vocal, be kind and teach the world about celiac disease.
Still, Work To Do
There is still much work to be done. Remember, estimates predict 2.6 million people in the U.S.have celiac disease and don’t know it. Share your knowledge about celiac disease. Let’s increase the rate of diagnosis. You might be contagious too.
THIS ARTICLE IS COPYRIGHTED BY AMY BURKHART, MD, RD.
Dr. Amy Burkhart is a doctor (M.D.), Registered Dietitian, R.D., and fellowship-trained in integrative medicine. She specializes in treating chronic digestive disorders from an integrative/functional medicine perspective. She is a specialist In celiac disease and gluten/wheat-related disorders.