There were some days when I didn't feel so bad. Still, every so often, I would get tripped up after eating sushi or teriyaki chicken, and I couldn't put my finger on what was making me sick. After more and more online research, I stumbled upon some information about gluten intolerance and celiac disease. In 2002, five years since the onset of my symptoms, I diagnosed myself with celiac disease, an autoimmune condition triggered by gluten, the protein found in everything from pasta to bread to cookies. The only known treatment for celiac disease—which can cause acute damage to the small intestine and the digestive system as a whole—is a lifelong gluten-free diet.
Since celiac disease seemed to cover each of the symptoms that had been plaguing me for so many years, I set about eliminating all wheat, then barley, oats, and rye—the main gluten-containing foods—from my diet. In the beginning, the road was rocky: There was so much I still had to learn about gluten, and finding desirable alternatives was not as easy as it is today. I also found myself repeatedly rebelling against my self-diagnosis, and bingeing on gluten-containing foods just to prove that I could have them if I wanted to. Despite these repeated slipups, I nevertheless persevered...And my body would soon thank me.
Even after this breakthrough, doctors resisted my self-diagnosis. Though I was convinced that I had celiac disease—and armed with plenty of specific examples to back up my claim—I still could not find a physician who would run the necessary diagnostic tests on me. Dismissing the theory that my diet could cure me, doctor after doctor kept on prescribing medications that did little more than mask my symptoms, if even that.
I began to wonder why so many doctors ignored my theory—and why I had to spend months learning about celiac disease on my own. There had to be a reason why such a common disease, which affects an estimated 1 out of every 100 to 200 people worldwide, was not on medical radar at all. The more I thought about it, the more I came to believe that there was no money in researching gluten intolerance, because there was no medication to treat it. No noise, no advertisement, no call to diagnose. Was this the result of some conspiracy? Neglect? Straight-up ignorance? Whatever the explanation, I had to struggle for eight long years before I found a physician who was willing to listen, willing to run proper tests, and willing to join me on the voyage that I'd been on since 1997.
Ironically, I had to travel all the way to Australia to gain real insights into what was hurting me in the United States, and when I moved to New York City, it was an Australian, Dr. Peter Green, the director of the Celiac Disease Center at Columbia University, who confirmed what I'd suspected for years. The moment he told me I had a disease—celiac disease—I enthusiastically thanked him. This reaction might seem a little bit odd, but I had been searching for a clear-cut diagnosis for almost a decade by then! I had consulted innumerable experts in the hopes of finding out what was wrong with me. For all those years I had waited in vain for an explanation that made sense. Dr. Green was the first doctor to look for the cause, not simply treat the symptoms. My gratitude to him is beyond measure.