Forty Years of Living with Celiac Disease

As of today, I have officially been living with celiac disease and eating gluten-free for forty years.

YES, you read that correctly… FORTY YEARS.

“But how, you don’t look a day over 29?” I know, right?

But all joking aside, I use July 9, 1981 as my celiac anniversary because I have the medical records to prove it. When my mother sold my childhood home seven years ago, I came across my pediatric medical records which was basically as thick as a phone book. (Remember those?)

My medical records from 1981

As I flipped through my medical records, two entries that stopped me in my tracks.

7/9/81: Dx celiac
7/17/81: Most likely celiac disease, responding well to gluten free diet

Whoa. There it was in writing. I actually think I was diagnosed slightly earlier than July right before my 3rd birthday. I do not remember the exact date of diagnosis because I was so young. My parents didn’t remember the exact date either because I think they chose to block out how sick I was as a toddler.

As a two-year-old, I was at the pediatrician regularly with classic symptoms such as failure to thrive, irritability, greasy bowel movements, and constant stomach aches. I was in the hospital for about a week which consisted of being poked, prodded, and tested for everything imaginable. Remember, there was no celiac blood test or genetic testing at the time. By the end of my week at the hospital, a pediatric gastroenterologist named Dr. James Markowitz diagnosed me with celiac disease after an endoscopy.

At my diagnosis, my doctor told my parents I would need to be gluten-free forever because I could not grow out of this disease. I truly believe this diagnosis and my switch to a permanent, life-long gluten-free diet saved my life. Too many older adults that I have 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. Celiac is a life-long disease.

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 traveled extensively pre-pandemic and I am eager to get on a plane again next week. I dine out or order in regularly. I am married and have a toddler. I have friends and family that love me very much and have been my best celiac cheerleaders over the years. Of course I have been “glutened” like anyone else with celiac, but I still live my life the best way I know how every single day. I just happen to have Celiac Disease.

Thank you all for your continued readership, support, and friendship. It really does mean the world to me. I hope you join me in celebrating my 40th celiac anniversary!

8 thoughts on “Forty Years of Living with Celiac Disease”

  1. Erin! Congratulations on all fronts–a thriving woman with celiac disease, a staunch advocate, visionary entepreneur, pillar of hope, courage, determination, encouragement, and zest!

  2. Hi Erin, My mother would have considered you a youngster as she lived until the age of 103. Thanks for sharing and for wonderful photos. Erica

  3. Thanks Erin for all your help and knowledge about Celiac. You helped me when I first got diagnosed and stopped eating Wheat, Barley and Rye, but still had problems. You suggested I stop eating any Oats cereals, etc for a month, and that was my problem. I belong to a little GF group in California and we exchange info about LOCAL restaurants or travels. Glad to have the Celiac Travel on my FB acct. Stay healthy and enjoy your adorable little girl. Will be back to NY for a family trip sometime and plan to check with you about local places. I know some here have closed due to Pandemic.

    Carol Land
    Danville, CA

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