Get to know the people who help Beyond Celiac shape resources to best support the celiac disease community.
People living with celiac disease and their families are at the heart of everything we do at Beyond Celiac. Last year, we started the Patient and Family Advisory Council (PFAC) to help guide our work and make sure we are meeting the needs of the community.
Each month, we’ll introduce you to members of the PFAC so you can learn more about people just like you who help to drive our work.
What is your relationship to celiac disease?
I was diagnosed in late 2009, but my symptoms appeared at least 10-years before my diagnosis. I am learning as much as I can about food and food ingredients so I can make smarter decisions about food purchases, eating at home, and eating at friends’ homes or restaurants. I ask questions. I scour corporate food and restaurant websites for gluten-free information, and, if necessary, I call the businesses directly.
Can you tell us a little bit about your path to diagnosis?
While being treated for my type 1 diabetes, my endocrinologist noticed my alkaline phosphatase (ALP) test levels were high. The doctor ran tests on my bone health but found no explanation to my high ALP levels. He then ran a simple vitamin D test at the suggestion of my wife, a Registered Dietitian. My vitamin D levels were below normal, and remained low even after six months of increasing levels of vitamin D3. My doctor, for the first time, suspected celiac disease. He ordered an antibody blood test and later a biopsy to confirm that I did have celiac disease.
Can you talk about your life after diagnosis and your experiences living with celiac disease?
After my diagnosis, I immediately began to learn how to follow a gluten-free diet. I learned to read food labels at the grocery store, understand cross-contact issues, and ask appropriate questions to wait staff when eating out. Learning about these things empowered me to feel confident in almost any situation.
In your opinion, what are the biggest flaws of the gluten-free diet?
Cross-contact and the cost of purchasing gluten-free foods are, in my opinion, the biggest challenges with a gluten-free diet. Cross-contact is difficult to control, including where food is grown, stored, processed, tested, and (finally) certified as gluten-free. As a result, we pay more to buy certified gluten-free foods.
What are your hopes for the future and what changes do you wish to see in the celiac disease field?
A cure is my hope. In the short-term, I hope to see: 1) more dedicated businesses for producing gluten-free foods at a lower cost; 2) all children being tested for celiac disease before they reach adulthood; and, 3) more restaurants preparing gluten-free meals with expanded gluten-free menus while taking appropriate measures to reduce cross-contact in their facilities.