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Wednesday, July 9, 2014
Happy 33 Years of Celiac Disease to Me!
I was diagnosed with Celiac Disease in 1981. I do not remember the exact date of diagnosis because I was just a toddler. My parents didn't remember the exact date either because I think they chose to block out how sick I was back in 1981. I was in the hospital for about a week before I was diagnosed with Celiac Disease being poked, prodded, and tested for everything imaginable. By the end of my week at the hospital, I was diagnosed with Celiac Disease and told to go 100% gluten-free forever. I was told that it was a disease that I would not grow out of at any point. I truly believe this diagnosis and my move to a permanent, life-long gluten-free diet saved my life! Too many people I've met were diagnosed as children and told they would outgrow Celiac. If you are diagnosed with this disease, you will NOT outgrow it. Do NOT believe a doctor who tells you otherwise.

Since I don't have an exact date, I am using today as my Celiac anniversary. While at my mom's house a few months ago, I came across my medical records from my childhood. This was one thick folder! As I was flipping through the pages, two entries caught my eye. Both of these entries were from July 1981 and both documented my Celiac Disease for the first time. I believe somewhere in early 1981 I was in the hospital when I got the actual diagnosis. I was between 2.5 and 3 years old at the time of diagnosis. My pediatrician did not diagnosis me, a specialized pediatric gastrointerologist named Dr. James Markowitz diagnosed me with Celiac Disease. At the time, he was a resident and younger than my parents. He did tell my parents this was a rare disease and the only "cure" was a gluten-free diet. Thirty-three years ago, this man knew more than many doctors know today!

It was exactly thirty-three years ago today, that Celiac Disease was written for the first time in my medical charts. Let that sink in for a minute people.


People often think their lives are over when they are diagnosed with Celiac Disease. But I was just around 3 years old and my life was just beginning. I was going to grow up with this disease. There was no avoiding it.

My medical records from 1981.
Click on the image to zoom in. 

I am not sure why, but seeing these documents made me feel emotional. I guess seeing my diagnosis in writing from so many years ago made me feel like I really have Celiac Disease. I mean, I always have known that I am living with Celiac, but I don't remember my actual diagnosis. I was too young and I am sure the whole process was very traumatic to me at such a young age so I blocked it out. Growing up with Celiac Disease, I do not remember anything but living a gluten-free life. This is me. This is all I know.

Celiac Disease has defined who I am for almost my entire life and not in a bad way. I have always been an advocate. I created brochures about Celiac Disease in second grade. While I shied away from talking about Celiac in my teens, I grew out of that embarrassed stage. I started gluten-free blogging in my 20s with Gluten-Free Fun. I also became a support group leader in my 20s when I became the lead organizer of the NYC Celiac Disease meetup group. And as if I wasn't busy enough in my leadership and blogging, I launched a second blog called Gluten-Free Globetrotter in my early 30s. I realized that Celiac Disease was with me for life so I chose to embrace it instead of hiding it. I had a lot to contribute to the Celiac community as someone who grew up with this disease. I wanted to show people that life could and will go on post-diagnosis. Today, I am a strong advocate in this celiac community and this makes me very proud!

Celiac Advocacy from 1986! 

If you know me either in person or from reading this blog, you know that I do not let Celiac Disease stop me from doing anything. I travel extensively. I dine out. I am in a relationship. I have friends and family that love me very much. I go to work every day and travel for this job 6 time a year. While I have been glutened like the best of us, I still live my life the best way I can every single day. I just happen to have Celiac Disease.

I do not use Celiac Disease as an excuse. I try not to blame Celiac for every little ailment I have although I realize it is probably part of the reason that my immune system is sometimes compromised. I am not threatened by this disease. I see food as my medicine, not my enemy. I am not isolated by my diagnosis. I do not fear life. I embrace life, my Celiac Disease just happens to be part of that life. 

I am who I am and much of what has defined me in life is due to my Celiac Disease. I am no longer ashamed. I hope through my leadership, advocacy, and blogging, I can encourage even just one person that life can go on after a diagnosis of Celiac Disease. I believe I have been successful with the numerous emails, tweets, and in-person thanks over the past 7.5 years of blogging.

Thank you all for your continued readership, support, and friendship. It really does mean the world to me! Please share this post with others, especially those who were recently diagnosed with Celiac Disease. I would be so happy to connect with them and give them encouragement!

Happy Celiac Disease anniversary to me! 

Now who is going to give me some gluten-free cake to celebrate? :-)

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Anonymous Anonymous said...

Happy Celiac Anniversary! So impressed with how you have handled your disease (and for so long!)and so many thanks for everything you do for the community :)

Blogger Unknown said...

Thank you so much Meg! If it wasn't for Celiac, I would not have connected with awesome people like you!

Blogger ackdavis said...

Kudos to that wonderful, young doctor who was capable enough at the time to find a DX and your cure. Kudos to your mom for her vigilance all these years. Kudos to you for sticking with it and never giving up. We can't let down our guard and stay celiac healthy. Keep up you great celiac work, Erin, especially now as you are reachg out internationally.

Anonymous Kaila said...

Happy anniversary! I love the brochure you made back in 1986, too cute. :)

Anonymous Anonymous said...

Happy Celiac Anniversary! My son (11 years old) just celebrated his 6th anniversary! He is an amazing kid and we hope we are guiding him to be as strong and enjoy life as much as you do!

Blogger Marie said...

Hi Erin,
A belated "Happy 33 years of Celiac Disease"! This month we are celebrating our daughter's diagnosis of 30 years. I don't remember a date either. I think I was just glad to have something to try. I look back at our daughter who was 13 pounds at 13 months old when my mother's friend gave us the information about Celiac Disease. Our doctor looked at it and agreed we should try it. Up until that time she just continued to lose weight, and she was diagnosed as failure to thrive. What a great young doctor to have figured it out, and how glad your parents must have been to have an answer. Back then we were just glad to have one who listened to us. Please convey a Happy 33 years to your parents too. Thanks for all that you have done for Celiac Disease, and all that you continue to do. Many good wishes, and keep up the great attitude!
Marie Carter

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