By Alice Bast, CEO, Beyond Celiac
I know it seems strange that anyone would be happy to be diagnosed with a serious disease. But after you’ve been suffering with debilitating symptoms of unknown origin for years, finally knowing the cause can be a huge relief.
The diagnosis that brought me “relief”: Celiac Disease.
Celiac disease is a genetic autoimmune disease that is triggered when a person eats gluten – a protein found in wheat, barley or rye. Essentially, the body of a person with celiac disease sees gluten as a “foreign invader” and begins to attacks itself when it is ingested.
The condition can typically be managed with a strict gluten-free diet. But first, you have to have a diagnosis. With over 300 symptoms, celiac disease can mimic many other conditions – which might explain why 83% of the estimated 3 million Americans with celiac disease are undiagnosed. Many of these people suffer with debilitating symptoms for 6 to 10 years (on average) as they seek an accurate diagnosis.
For me, diagnosis took nearly a decade.
The first symptoms of celiac disease began after I caught a parasite in Mexico. I was treated, but I never returned to full health. I was plagued by fatigue, migraines and uncontrollable diarrhea that kept me awake at night. Later I learned that, though there is no specific research to draw a definite conclusion, celiac disease is thought to be triggered and become active for the first time after a major health event, such as a viral infection, pregnancy, childbirth, or even severe emotional stress. In the midst of my illness, I became pregnant with my second child. My pregnancy ended with despair; I gave birth to a full-term, stillborn baby girl we named Emily.
The loss of Emily marked the start of years of struggle with reproductive health and a host of other symptoms. I had multiple miscarriages until I finally gave birth to my youngest daughter, who weighed a mere 2 pounds at birth and fit in the palm of my hand. I continued to live with debilitating migraines and constant diarrhea. My skin would tingle and burn; my joints ached regularly. Everything interrupted my sleep, and I grew wearier as I dropped to 105 pounds, despite being 5’9”.
Like many with undiagnosed celiac disease, I traveled to doctor after doctor desperate to feel well again (some people suggested that perhaps I needed a psychiatrist instead). Finally, the family veterinarian suggested that I get tested for celiac disease. I brought this idea to be my gastroenterologist, but he dismissed the possibility – he said I was too tall. Like many doctors, he had the misconception that celiac disease is a childhood illness that stunts growth, so he expected that someone with celiac disease would look scrawny and malnourished (I hardly fit that description). I insisted on getting tested anyway. Sure enough, I was diagnosed with celiac disease. I adopted the gluten-free diet and never looked back.
I’m grateful for the gluten-free diet; it restored my health and allowed me to reclaim my life. I feel well most days, but when I am exposed to gluten (even just a crumb) when dining outside my home, my migraines and burning skin come rushing back with a vengeance. The gluten-free diet is a great Band-Aid to keep symptoms at bay, but like many of us with celiac disease, I impatiently wait for therapeutic treatment options or a cure.
If you have unexplained symptoms, including bloating, gas, diarrhea, depression, anxiety, infertility, migraines, weight loss, weight gain, and anemia, consider celiac disease. Complete the Celiac Disease Symptoms Checklist and consider getting tested for celiac disease.
May is Celiac Awareness Month. Take #60forCeliac by watching and sharing a one-minute video about the invisible illness aspects of celiac disease, check out the infographics, download an e-cookbook loaded with delicious gluten-free fare and more at www.BeyondCeliac.org/awarenessmonth.
Alice Bast is the CEO of Beyond Celiac, formerly known as the National Foundation for Celiac Awareness. Beyond Celiac is a non-profit that advances widespread understanding of celiac disease as a serious genetic autoimmune disease and works to secure early diagnosis and effective management. Beyond Celiac empowers the community to live life to the fullest and serves as a leading and trusted resource that inspires hope, accelerates innovation, and forges pathways to a cure.