Seriously, Celiac Disease

05/05/2015 03:25 pm ET | Updated May 05, 2016

Imagine being at the height of your professional career only to lose all control of your health. For Chad Shaffer, a healthy professional, this nightmare became a reality. In just a few short months, he went from being perfectly healthy to becoming so ill he was confined to a wheelchair. For months, he suffered from debilitating muscle weakness, severe weight loss, developed a paralyzed diaphragm, cardiac arrhythmias and eventually went into cardiopulmonary arrest.

Now picture a different kind of nightmare -- suffering day to day for as long as you can remember, always wondering what it would feel like to experience just one day of good health. For nearly her entire life, Jilly Lagasse, daughter of chef Emeril Lagasse, lived with severe lethargy, depression, eczema, and life-interrupting digestive issues. After years of fighting these debilitating symptoms, she began to lose everything from her hair to her personal life, but never gave up the hunt for answers to her ever-deteriorating health.

Think about what it would be like to live in constant fear that you or a loved one will have a child fall ill or pass away -- a parent's worst nightmare. A dear friend of mine watches as her daughter battles cancer after years of begging her to take one simple preventative measure. Each day, she fears that she will do what every parent dreads most -- bury her child.

More than 20 years ago, I actually lived through this nightmare. I said goodbye to a child I never got to know, a baby girl named Emily who passed before her first breath.

Each and every one of these heartbreaking experiences could have been avoided. It may seem as though these nightmares are vastly different, but one factor connects each of them: undiagnosed or misdiagnosed celiac disease.

Since its founding in 2003, the National Foundation for Celiac Awareness (NFCA) has raised awareness of celiac disease as a serious, genetic autoimmune condition with the goal of helping people get a diagnosis. When I founded the organization, 97 percent of people remained undiagnosed or misdiagnosed. Today, that number has dropped to 83 percent. We're making progress, but there is still work to do.

I hear stories of desperation from people who try to warn their families of the risks, but are met with resistance. Could it be that they are simply afraid of a positive diagnosis? Maybe. Perhaps they heard the jokes circulating the Internet about the gluten-free diet and think that it's really no big deal. Or, maybe the risks haven't been fully explained to them. They may think, "I don't have any symptoms. This can't happen to me."

Sam Master would tell you differently. Throughout his childhood, Sam seemed to be the poster child for good health. He felt fine, didn't experience out of the ordinary stomachaches, and he had enough energy to keep up with his peers. But after his sister was diagnosed with celiac disease, Sam and the rest of his family members got screened as well through a simple blood test. Though he had no symptoms, Sam did, in fact, have celiac disease.

His story has a happy ending. More than 10 years since his diagnosis, Sam is a fourth-year medical student and a dedicated advocate for the celiac disease community. Had he not been screened, Sam could have been wheelchair-bound at the pinnacle of his career or developed cancer or another autoimmune disease, all because he seemed perfectly healthy on the outside as a war was raging on the inside.

Some may still think this could never happen to them. But the fact of the matter is, celiac disease is far from rare. This serious genetic autoimmune condition affects an estimated 3 million Americans. Only 510,000 people are diagnosed. The remaining 2,490,000 people are unknowingly living with celiac disease, at risk for developing devastating health consequences, like the ones Chad, Jilly and my dear friend's daughter have experienced.

At NFCA, we are hopeful for more stories like Sam's, ones in which good health is maintained, parents don't have to worry about losing their children, and the focus is on a flourishing career instead of doctor's appointments and invasive medical tests. To achieve this, it's time for celiac disease to be taken seriously.

This is why the NFCA launched Seriously, Celiac Disease and the Talk. Tell. Test. campaign.

To drive down the undiagnosed rate, NFCA embarked on a multi-phase research project to learn how to effectively reach the people most at risk: blood relatives of people already living with celiac disease. The result? A research-tested strategy that includes an impactful video and a Dos and Don'ts guide designed to help those diagnosed have the most effective conversation with their relatives.

My hope is that celiac disease makes its way out from under the current misconceptions that it is rare or "not that serious." NFCA is working to make it happen, but we need your help. If you're living with celiac disease, don't be afraid to give it the attention it deserves by initiating a focused conversation about your family's need to get tested. Help your relatives avoid the severe health consequences that can come from untreated celiac disease. Talk to them. Tell them the facts. Urge them to get tested for celiac disease.