Going Undiagnosed
The New York Times recently published an article that touches on some things I’ve been thinking about lately. In The Overlooked Diagnosis of Celiac Disease, Carolyn Sayre discusses how long it often takes to get a confirmed diagnosis, and how many people are likely going undiagnosed.
One in every 133 Americans has celiac disease; 10 years ago it was thought to affect one in every 10,000 people in the United States… It takes the average patient 10 years to receive a diagnosis.
What really caught my eye was the idea that the diagnosis is seemingly becoming more and more popular. One in 133 in the US. I know a handful of people who have a gluten intolerance to some degree, a couple who claim full-out celiac disease. In my office of 6 people, 2 of us have it.
But is the disease itself becoming more common, or is it just that more people are actually being diagnosed? According to Dr. Bongiorno in the article, many doctors are unfamiliar with current research and some of the more uncommon ways the disease presents.
That certainly makes sense to me. I was diagnosed by my natural-path after doing a food trial; we removed all wheat and gluten from my diet for a month. After reintroducing wheat, I realized just how bloated and gassy it had been making me. It was like I didn’t know how bad I felt until I no longer felt bad. I didn’t realize I was bloated, I thought that’s just how my stomach looked.
When I told my family doctor, he actually tried to argue with me, saying that if I had celiac disease I would have been so ill it would have been obvious. Well, clearly not, because it wasn’t obvious enough to me to question how I felt.
I’m beginning to think the diagnosis is simply becoming more common because people are more open to the possibility. More people are questioning how they feel, they’re visiting alternative medical professionals, and they’re simply looking for more information.
(Of course, my other theory is that the typical North American diet is causing an increase in those suffering from celiac disease, but that’s another discussion for another day.)
I just told my GP that I’ve been gluten free for a year. My symptoms aren’t GI ones but neurological. I get dopey and fall asleep if I eat wheat. It gives me headaches and back pain. I can’t officially be diagnosed because I refuse to do a food trial that will cause damage. My back just hurts too much now if I eat gluten.
I think people are more open, but I’ve heard it said that wheat today is a very different grain then in the past. Not nearly as close to the land. It was very sad for me to read Recognizing celiac disease : signs, symptoms, associated disorders & complications / Cleo J. Libonati; foreward by David M. Capuzzi and realized that my mom was probably celiac. It brought me to tears to read through 142 pages of symptoms and time and again see more and more things she’d put up with that could so easily have been fixed by a GF diet.
I wouldn’t be surprised that wheat is very different today than the original grain, with factory farming, genetic modifcation of seeds, processing, etc.