NFCA President and CEO Alice Bast responds to the tv personality’s comments about celiac disease.
By Alice Bast, President and CEO
of the National Foundation for Celiac Awareness (NFCA)
Let’s talk about baloney, shall we?
I’m not talking about the meat you put in a sandwich. I’m talking about celiac disease – a serious genetic condition that television personality Joy Behar dubbed as “baloney” on the January 20, 2015 episode of Morning Joe. Let me say that again: a serious condition. More specifically, a serious genetic autoimmune disease that I happen to live with, along with 3 million other Americans.
As the President and CEO of the National Foundation for Celiac Awareness (NFCA), it’s my job to come out and say what those living with the currently incurable autoimmune disease are thinking: Joy Behar’s comments about celiac disease are inaccurate and unfair.
Almost 25 years ago, I began the most painful, heartbreaking journey of my life. My husband and I were trying to start a family of our own, a dream of ours that slowly tore our lives apart. I suffered through miscarriage after miscarriage before finally carrying a pregnancy to full term. On the day that was supposed to be one of the happiest of my life, I gave birth to a stillborn baby, a little girl that we named Emily. The child that I never got to know.
In the midst of my grief and heartache, I suffered from severe migraines and diarrhea that left me almost completely homebound. My hair was falling out. My teeth would crack and crumble on the rare occasions I had enough of an appetite to eat. Despite my best efforts to get well, I wilted to just 100 pounds at 5’9”. I was dying.
I was told by doctor after doctor – 32 in all – that I wasn’t sick, I looked fine, it was all in my mind. Finally, after eight years of fighting for answer and a treatment, I received my diagnosis of celiac disease. I accepted my prescription of a lifelong gluten-free diet, the only treatment for celiac disease, and never looked back.
I wish I could say that my story is rare, but that couldn’t be further from the truth. Celiac disease, despite celebrity opinion, is quite real and quite common. 3 million Americans have the autoimmune disease. 83% of those 3 million people remain undiagnosed or misdiagnosed. That’s over 2 million people who are out there living with a painful, life-threatening “mystery illness.”
Yes, celiac disease can be life-threatening when left untreated. You see, when people with celiac disease eat even a crumb of gluten, the immune system sees it as a foreign invader and launches a violent attack to eradicate it. That means healthy tissue is being destroyed, leading to the inability to absorb nutrients from food. This doesn’t just leave people with a tummy ache; it causes infertility, depression, anxiety, osteoporosis, other autoimmune diseases and even certain cancers.
Since the gluten-free diet became the latest trend, life has been even harder for people living with celiac disease. Sure, gluten-free food is more available, but we’re not being taken seriously. We’re accused of being fakers and fad dieters. Something as small as using a knife that cut wheat bread to cut gluten-free bread is enough to launch the body’s immune response and cause damage that lasts well beyond the symptoms.
The characterization of a serious genetic autoimmune disorder as fake is offensive to those living with celiac disease and knocking a medically-necessary diet only prevents people from getting tested if they have symptoms. Would someone ever call a person living with another autoimmune disease, like multiple sclerosis or lupus, a faker? Invisible illnesses are quite real and no one is in a position to judge the severity of others’ conditions.
I encourage anyone who would like to learn more about celiac disease to visit www.beyondceliac.org to get the facts and understand the symptoms. To dismiss a serious genetic autoimmune disease as “fake” is, quite simply, baloney.