Meet Brianna E.
“It is important to collectively unite as we learn more about potential cures; a cure for one autoimmune disease might lead us down the best path for cures for other autoimmune diseases! Together, our voices are stronger, and our strength is greater.”
What has been your biggest challenge on your autoimmune journey?
I was diagnosed with celiac disease a few months before starting college. I attended a relatively large college and was told that they would be able to accommodate my new gluten-free diet needs. I was still learning the ins and outs of a gluten-free diet and managing celiac disease when I began college. I didn’t have access to a kitchen and wasn’t allowed to have a car on campus as a freshman, so I had very little control over my food and what it was coming into contact with. By the end of my freshman year, I was malnourished and almost failing out of school because I was constantly sick from eating campus food that was not actually gluten-free and had come in contact with gluten. I spent sophomore year working harder to advocate for myself and my needs to better manage my celiac disease diagnosis. I met with the campus dietitian, Disability Support Services, the Dean of Students, and finally, the Director of Campus Residences, who was able to give me permission to move into the apartments on campus. I finally had a refrigerator to keep the gluten-free food that I purchased at the grocery store. I finally had my own bathroom in case of an accidental gluten exposure. But above all, I finally had a kitchen where I could feel confident that my food was never going to come in contact with gluten. Once I had access to a kitchen, I thrived in college, like I always knew I could. I pulled my GPA up so high that I was able to attend graduate school for a master’s degree in Applied Nutrition, so I could help others cope with their celiac disease diagnosis.
What has been instrumental in helping you navigate and adapt to living with autoimmune disease(s)?
Meeting with a dietitian after being diagnosed was essential to learning to follow a gluten-free diet. The knowledge the dietitian provided me with was invaluable. She taught me and my family what gluten is, what to avoid, and how to read labels to determine whether or not something is gluten-free. The hands-on learning opportunity was really helpful for me, a 16-year-old at the time, to understand what I need to avoid and why a strict gluten-free diet is mandatory for those with celiac disease. In the years following my diagnosis, the Celiac Disease Foundation has been a critical resource for me for gluten-free recipes, the latest research, and provided me opportunities to participate in celiac disease research.
What advice would you give someone who is struggling with an autoimmune disease(s)?
Finding a community of people with the same autoimmune disease can be so helpful. Whether you join an in-person or virtual support group, or get involved with an organization dedicated to uniting your community in a common mission, knowing there’s a group living with the same thing you are can offer a safe space for advice, sharing autoimmune disease stories, and the reminder that you are not alone in your experiences with the autoimmune disease.
Why is it important for those who are living with a specific autoimmune condition to join together and raise awareness about autoimmune diseases as a category?
Having one autoimmune disease significantly increases the likelihood of developing another autoimmune disease. Because of this overlap, raising awareness of all autoimmune diseases can help patients and doctors more quickly connect the dots and see the big picture of related symptoms, ultimately providing a faster and more thorough diagnosis. And because of overlap, it is important to collectively unite as we learn more about potential cures; a cure for one autoimmune disease might lead us down the best path for cures for other autoimmune diseases! Together, our voices are stronger, and our strength is greater.
Looking for more information?
Many of our partner organizations specialize in support for specific autoimmune diseases and have additional resources, research and care-management information available.