It’s been just about 5 years since I was diagnosed with celiac disease—a disease that I learned about during my second year of medical school and never in a million years imagined I would eventually be diagnosed with.
As I reflect on my gluten free journey, I realize how much I have learned, adapted, and done my best to live with this life-changing diagnosis. When I was diagnosed in 2010 there were many things I did not know or anticipate:
…I had no idea that I’d never again live a single day of my life without having to really think about and plan out ahead of time what and where I was going to eat. I had always taken food for granted and eaten whatever I wanted wherever I wanted.
…I had no idea that celiac disease could cause neurological symptoms and that I’d develop a celiac-induced peripheral neuropathy (nerve inflammation and damage) after 2 years on the gluten-free diet.
…I had no idea how poorly understood this disease is both within the medical community and in the general American public.
…I had no idea that my entire family and household would eventually also have to go gluten-free because I ended up being so sensitive to gluten cross-contamination. And I had no idea how selflessly by gluten-loving husband would give up gluten to help me heal.
…I had no idea that almost every single social event includes food in some way, shape, or form (or at least I had never really thought about or focused on this).
…I had no idea that all of my joint pains/”atypical” lupus symptoms/possible fibromyalgia/undifferentiated autoimmune symptoms would magically disappear within weeks of going gluten-free.
…I had no idea that a horrible “glutening” episode in 2011 would lead me to miscarry at 11 weeks gestation, but that I would then go on to deliver a healthy, gluten-free baby one year later.
…I had no idea that I would ever feel well enough to be able to train for and run 3 marathons.
…I had no idea how supportive my family and friends would be of my new lifestyle, and how many times people would go out of their way to ensure that I’d be able to safely eat.
…I had no idea how resistant my family members would be to getting screened for celiac, as well as how many times I’d hear the words, “I’d rather die than have to stop eating gluten.”
…I had no idea that I would eventually start a blog, Facebook page, Twitter account, etc. about celiac disease (the Twitter account still surprises me and I don’t totally understand how to optimize using it). And that I would meet so many amazing fellow gluten-free folks as a result of my online efforts and social networking. You have all helped me more than you’ll ever know.
Thanks for reading and please feel free to share your thoughts, feelings, experiences, and surprises with celiac disease in the comments section. Also, I am working on an updated mast cell activation syndrome (MCAS) post that I hope to publish within the next few weeks.