Celiac Awareness Month 2021: Sharing My Story (part 1)

In honor of Celiac Awareness Month, I thought I would share part of my celiac disease story. (If you follow me on Instagram, you my have read some of this already!)

Yes, that’s me in both pictures and yes, I have celiac disease in both pictures.⠀

Believe it or not, I was diagnosed in 1981 after about only 9 months of doctors appointments: initial symptoms to endoscopy and diagnosis from a pediatric gastroenterologist. Given that the average time to get a proper diagnosis today is 6-10 years, I feel that my diagnosis almost 40 years ago was a bit of a miracle. ⠀

Thankfully my doctor not only told my parents what was wrong with me, he also told them it was a lifelong disease that would need strict adherence to a gluten-free diet. A long time ago, doctors believed celiac was only a childhood disease that could be outgrown. I feel lucky that I had such a knowledgeable doctor who was clearly ahead of his times. I wasn’t always healthy, but we knew what to look for. ⠀

Growing up with celiac disease in a world before “gluten-free” was even in anyone’s vocabulary definitely had it’s challenges. Remember, this was in a pre-internet and cell phone era where my parents did the best they could with the limited information they could find. It was also difficult to find gluten-free food. You couldn’t just walk into a supermarket to buy gluten-free products like you can today. We mail-ordered my bread and drove all around to health food stores on Long Island to find food I could eat. Labeling laws weren’t even in existence yet so NOTHING said gluten-free on the package. There was lots of very sick trial and error. ⠀

If you had told me or my parents that celiac disease would pave the way to where I am today, I am not sure any of us would believe you. (I was only about 2.5 at the time of diagnosis, so I didn’t understand what was going on anyway!) Today, I can confidently say that celiac disease has defined who I am as a person, patient advocate, blogger, traveler, and so much more. ⠀

Happy Celiac Awareness Month everybody. Thank you for reading my blog and thank you for being a part of this community. ⠀

6 thoughts on “Celiac Awareness Month 2021: Sharing My Story (part 1)”

  1. Hi Erin,
    Our daughter was diagnosed in 1984 and I remember those days very well. Your story sure brings back a lot of memories of trying to find a health food store who would order rice flour for us. We also were very lucky that we had a doctor who was willing to listen to us. A friend of my Mom’s told us about Celiac Disease in 1983. She had been diagnosed as in adult with Sprue in Kansas City, MO in 1982 and was able to show us the pamphlets that she had about Celiac Disease. If it wasn’t for her, and if we hadn’t of had a doctor who was ready to listen, our baby daughter’s diagnosis of “Failure to Thrive” might have had a different ending. After being as gluten-free as possible back then, she started to get better! She gradually gained weight, and we look at her now with her own family and career, and we are so thankful. I hope you and your Mom enjoy Mother’s Day!
    Marie Carter

  2. Hi there – I just stumbled across your blog. So glad to find your resources. I’m a fellow Celiac Globetrotter – currently living in west Africa, moving to Beijing soon. Coming to NYC and happy to have found your resources. Thanks for sharing your story and resources!

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