Your voice is at the center of everything we do at Beyond Celiac. We rely on input from our community to ensure that we’re meeting your wants and needs when it comes to living with celiac disease. Because of this, we created the Patient and Family Advisory Council, a group of passionate community members who are all affected by celiac disease in some way.
Meet our Council and see why they’ve applied to be a part of this community!
My journey with celiac disease symptoms started sometime around 2011, but I was not diagnosed until 2016. Looking back on those years of confusion and many doctors visits, as well as the last three years living gluten-free, I’ve often thought about how I could help others navigate the maze of celiac disease. My desire is to help bring awareness to celiac disease and connected autoimmune diseases, as well as advocate for a healthy and balanced relationship with food, exercise, and self-awareness. I graduated with my MBA in October 2019 and I absolutely love fitness and nutrition. I’m very excited to serve on this council!
In August 2015, my daughter had just turned 7 and weighed 35 pounds. While we were worried about her minimal growth for two years, doctors did not test for celiac disease. It was only when I learned there was an autoimmune connection between type 1 diabetes, which my husband has, and celiac disease, did I insist on a celiac panel and endoscopy. Two days later we had an answer and a path. Beyond Celiac has been a huge part of that path. My hope is to help increase awareness of celiac disease and its connection to other autoimmune diseases in order to shorten the time of symptom onset to diagnosis. It is a different physical, mental and social journey for a child diagnosed with celiac disease and finding optimum health is a must. With a degree and background in the food industry, I also hope to help create an awareness of what is safe and not safe when dining out. I am excited and honored to be a part of the Patient and Family Advisory Council.
I was diagnosed with celiac disease two years ago and it turned my entire world upside down. As a college educator, I work primarily with underserved populations and I’m interested in the improvement of diagnosis and care for these individuals. Blood testing and biopsies can be cost-prohibitive and inaccessible to vulnerable groups and it is important that we find a way to provide access. I recently participated in a study for a developmental drug aimed at minimizing the impact of cross-contact. It is my hope that others will step up and participate to help find solutions that help improve quality of life and minimize the stigma associated with celiac disease.
My mom, brother and I were all diagnosed with CeD as adults-all showing different manifestations of the disease. While neither of my two young sons have received a diagnosis of CeD, I worry over each headache or stomachache. I particularly feel for kids and young adults living with CeD. The child who has to skip birthday cake at the party. The young adult who can’t comfortably go on a dinner date.The college student that has to return home from school because he can’t stay healthy away. The physical toll the disease takes is obvious, but the social toll can be excruciating. With a master’s in microbiology, I am interested in all aspects of research and am pleased to serve on the advisory council, sharing my opinions and experiences as needed to help anyone who is currently living with or will be living with CeD—it might help one of my sons one day.
Mary Beth Burke
My name is Mary Beth Burke—a Colorado native, wife of a firefighter/paramedic and mom of 3 active kids. I worked as a nurse in pediatric and adult hospital settings before becoming a full time stay-at-home mom 10 years ago. My two sons were diagnosed with celiac disease last fall. We have learned how to function as a household with gluten-eaters and gluten-free together. Beyond Celiac has been an excellent resource and I hope our experience can contribute to this community.
Learning all I could after a recent diagnosis, Beyond Celiac was the first celiac disease website I found. Finding accurate information and increasing my knowledge was so important. Support is vital, educating yourself, and connections help the newly diagnosed and celiac disease veterans. Goals of early diagnosing and improved support remain important. I am excited to be a part of this group and see the encouraging work, new research, and progress being made in celiac disease.
I never thought celiac disease was something I would have to worry about until 2017, the year I was diagnosed. Until then, I had barely heard of the disease. The challenges I have faced trying to maintain a gluten-free diet are greater than I had expected. I have joined the Beyond Celiac Patient and Family Advisory Council as a mission to help other who struggle with the same challenges I have endured.
Alison Clabaugh Seiferth
Alison is the mother of two young children with celiac disease. Her older daughter was diagnosed at the age of 4 in 2014, followed by her younger daughter at the age of 3 in 2016. Alison has been involved as both a volunteer and fundraiser for Beyond Celiac over the past 5 years. Alison is also an adjunct professor of psychology at Arcadia University in Glenside, Pennsylvania.
In 2017 both my 14-year daughter and I were diagnosed with celiac disease. I was introduced to Beyond Celiac shortly thereafter and have since truly appreciated the wealth of information to answer our questions, help guide us and keep us up-to-date on related research. This year, I made the decision to get involved and help make strides towards increasing awareness and education & advocating for all that are affected. It is my honor to be here and part of the group.
My struggles with celiac disease started in late 2012. I fell very sick and struggled with multiple doctors, appointments, and tests to figure out why. My one doctor thought of celiac disease early on, but my blood test came back negative. Eventually, after exhausting other avenues, I was sent for an endoscopy which showed intestinal damage. A biopsy was done and came back positive for celiac disease. Finally, in June 2014, I had an answer! Since then I’ve completed nursing school and have been a practicing RN for 2 years. After going through two medical research courses in school, I’ve become more interested and involved in celiac disease research. I enjoy keeping up with recent advancements and even reading through studies in my spare time. I hope to one day become a participant, and fingers crossed for a breakthrough in my lifetime! But for now, I’m very excited to have been chosen for this counsel and begin my active participation in this community!
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