The Celiac Disease Center at Columbia University is one of the major research centers around studying and bringing awareness to this disease which affects an estimated three million Americans. It is one-hundred percent focused on studying celiac disease and carries out research connecting it with various other diseases which it is believed to lead to if left untreated. Its goal is to change the lives of celiac disease sufferers for the better around the world, a goal which it is actively achieving, little by little, every day. As hard as it works, though, and despite the good it has achieved for many, chances are you haven’t heard about celiac disease yet. And the same goes for ninety-seven percent of the people who suffer from it.
What exactly is celiac disease then? It is an autoimmune disease caused by an allergic reaction to the component of wheat, barley, and rye, called gluten, which can affect the entire body. There are many painful symptoms which are confused for the symptoms of other diseases, and most doctors, uneducated in celiac disease, fail to diagnose it correctly.
Why is it that you and your doctors probably haven’t heard about celiac disease? Although the amount of research on celiac disease is growing, it depends entirely on the generosity of benefactors for its funding. Without these charitable donations, there would be no way to continue this research and the efforts to raise awareness. Out of the estimated fifty autoimmune diseases that have been discovered by doctors, it is the only one for which research isn’t supported by the U.S. government.
Despite the lack of funding, thanks to the hard work of celiac disease advocates, there has been some progress made in the fight to raise awareness. In 2003, an unofficial group of celiac community leaders came together to help persuade Congress to pass a law which would require food labels to include information about allergens. The Food Allergen Labeling and Consumer Protection Act was signed into law on August 3, 2004, greatly helping those who suffer from celiac disease or who are gluten-sensitive to shop for gluten-free groceries. When this was achieved, the need for a permanently established advocacy organization was seen, and this advocacy group became the American Celiac Disease Alliance (ACDA), which continues to this day to represent the celiac community to Congress.
Thus, strides have certainly been made in respect to helping the celiac community, but this isn’t good enough. After all, out of the three million Americans who are estimated to have the disease, only about three out of every hundred of them have been diagnosed. I am one of the lucky three who discovered the cause of the physical, and emotional, agony sufferers of celiac disease go through. I spent years going from doctor to doctor, getting test after test, trying a variety of suggested solutions, but with no answers and no relief. That’s when I began my own research. It was a long, hard road, and I’m determined that no one else have to follow it—if they’re even able to.
That’s why I support centers such as Columbia University’s Celiac Disease Center and the ACDA, but I’ll tell you something—they’re going to need more than just my own support. They need the advocacy and financial support of the government in order to end the suffering of three million of its citizens.
From our home to yours, Tina Turbin.