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Conversations with Hayley Johnston

Today we’d like to introduce you to Hayley Johnston.

Hi Hayley, thanks for sharing your story with us. To start, maybe you can tell our readers some of your backstory.
I’m a 28 year old Celiac living in the city of St. Louis. My story begins smack dab in the middle of my undergraduate career at the University of Illinois. I was diagnosed with Celiac Disease in July of 2013. I spent 3 painful years prior with an IBS misdiagnosis. I began getting really sick my sophomore year second semester and by the time I got back home for the summer, my parents immediately knew it was Celiac Disease since it runs in my family.

I know how difficult maintaining a social life can be when your life is severely limited by what you can eat and drink. I started my blog to document my journey of overcoming the anxiety and hardships that come with having to be gluten free and exploring amazing (and maybe not so amazing) restaurants, recipes, products, and more. Since beginning my page, I have been able to connect with other gluten free content creators around the world. No matter where I am traveling to I always have someone I can reach out to for safe eating suggestions. I also compile a list of gluten free options in St. Louis on my website and Instagram. I love when people reach out to me asking for places to eat when the visit!!

Alright, so let’s dig a little deeper into the story – has it been an easy path overall and if not, what were the challenges you’ve had to overcome?
Every single day is a battle when you have an autoimmune disorder, especially when your disorder is an invisible illness. Since I don’t fit the persona of what the general public thinks of when I say I am chronically ill, it is harder to advocate for myself., There isn’t a single decision I make where I am not factoring in my health. When I was diagnosed in 2013, Celiac Disease, and gluten free diets as a whole, were not a common thing so finding places to eat out at in my college town or safe products in the grocery store was a constant struggle.

Since then, the gluten free food industry has expanded with the help of fad dieting which has been helpful when it comes to finding products in a grocery store but has made eating out restaurants a lot harder because so many people claim to be gluten free that we often run into restaurant staff who are skeptical about the severity of our gluten free needs. The number one thing I have learned is that I have to be my own best advocate.

Thanks – so what else should our readers know about your work and what you’re currently focused on?
I am unapologetically me. When you are chronically ill you have to have hard conversations all of the time and I think my community really appreciates that. I am not going to promote a product or place unless I really believe in it and feel safe sharing it with my community. I think that sets me apart it the “influencer” world. I am not in this for the money. I truly want to help people who are experiencing the same difficulties as me and have a little fun along the way. You may see my GFAF stickers around STL. I love when people find them and send me a picture!!

Can you talk to us a bit about the role of luck?
I feel SO lucky that my family understands my disease and does everything in their power to accommodate for my restrictions. I know many people do not have this luxury. If anyone needs a safe gluten free Thanksgiving, hit me up (maybe post pandemic)!! We have all the gluten free goods a person could want.

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