By Alice Bast, CEO, Beyond Celiac
Once you have a celiac disease diagnosis, with its imperfect and incomplete treatment, thoughts of celiac disease are always as close as your next meal or snack. I know this all too well from my own personal experience, and I hear it again and again from others.
My friend Sarena Snider describes celiac disease as a cloud that is always around her, coloring the experiences of dining out, social events, her general perception of her health and how she thinks other people perceive her. As she told me in a recent conversation, “Celiac disease complicates things.”
When Sarena was 18, her father began losing a lot of weight with no apparent cause. Eventually, the culprit was discovered. After his celiac disease diagnosis, Ed became a staunch supporter of Beyond Celiac. We became great friends through our journey together. He was probably as aware as anyone of the genetic risk his children faced for celiac disease. Over the years, Sarena was tested, but came up negative.
Then, when she was 26, she had an unexpected weight gain. She had joint pain. A lot of joint pain. She had anxiety. And a physical and emotional malaise with no apparent cause. She became alarmed. She knew something was wrong and suspected celiac disease, but had to really push to get tested. After all, though weight fluctuations are common in celiac disease cases, weight gain is not a symptom that is quickly connected to it.
Finally, she got the answer that she had been suspecting: Celiac disease. She was also diagnosed with Lyme disease. There’s speculation that Lyme disease might trigger the onset of celiac disease in some people – and Sarena has wondered if that was the case for her. There is a lack of research on the connection, so at this point it’s impossible to say. The two diseases share a number of symptoms, so it’s difficult to know the exact cause of Sarena’s symptoms. But, armed with answers, she was able to pursue a course of treatment for Lyme and embark on the gluten-free diet for celiac disease.
Sarena, like many celiac disease patients, notes that it’s nearly impossible to stay completely gluten-free. Cross-contact while dining out is a constant challenge. “You have to advocate for yourself,” Sarena says. “You’ve got to have that conversation with waiters every time you eat out. Sometimes they treat me like I’m totally neurotic. It’s easy to feel beaten down. But you’ve got to stay vigilant. Frankly, your life depends on it.”
Today, Sarena advocates for clean eating, not just staying gluten-free. She weaves her philosophy through her work as a communications professional. You can learn more about her at www.SarenaSnider.com.
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.