Describe your life prior to diagnosis.
I had ever-worsening osteoporosis, and oral meds did not help. I eventually took bone density injections every six months for two years, and had two bone density infusions at the hospital. In 2021, my DEXA scan was normal, they thought I was “cured“, and then the next scan in 2023 showed severe osteoporosis again. At that point, we knew there was something underlying going on.
How did you find out that you had celiac disease? Did you suspect it beforehand?
My mother had osteoporosis and broken bones, and eventually wound up in a wheelchair. Knowing there was a hereditary component, I made my doctors aware and was actively monitoring my own health. But I did not know what celiac disease was, and would never have suspected that could be the problem.
After my bone density fell off dramatically again in 2023, my endocrinologist did extensive bloodwork, and that’s how we discovered that my celiac disease antibodies were off the chart. An endoscopy confirmed the diagnosis.
I had seen my primary care doctor, an endocrinologist, and then a second endocrinologist who was the one who finally made the discovery. A gastroenterologist did the endoscopy.
How long did it take for you to get diagnosed since your first symptoms and what (if any) challenges did you face along the way?
I am asymptomatic, which definitely contributed to the length of time it took to diagnose me. But I was being treated with osteoporosis meds for at least 10 years before my diagnosis. I was borderline anemic back in elementary school, so probably had it most of my life. I also had chronic sinus and ear infections and terrible acid reflux that all got progressively worse as I got older, which should have provided clues.
In retrospect, I believe my mother probably had celiac disease, too, and never knew it.
Do you believe anything could have sped up your diagnosis?
More awareness and family history could have enabled a diagnosis sooner.
Describe your experience living with celiac disease.
I am grateful that I had some cooking skills, because I eat most of my meals at home now. Celiac disease can be socially isolating. Holidays all revolve around food, and I am the only one in the family so far who is affected.
I used to travel often, and although the idea of traveling still sounds fun, it’s tempered with the realization now that I also have to eat. That can be daunting.
What would a cure mean for you?
A cure for celiac disease could mean the return of the life I once knew. Being recently diagnosed, there is a mourning period you go through for the life you once had.
Is there anything else you’d like to add to your story?
I wasn’t diagnosed until I was 69 years old, which means that I got to live a lot of my life “normally,“ but it is also worrisome that my delayed diagnosis could cause health problems later on.
