Describe your life prior to diagnosis:
I had none of the “typical” symptoms that I associated with celiac disease. I ate whatever I wanted and had no outward symptoms.
How did you come to know (or suspect) that you have celiac disease?
A routine bone density scan showed progression from having osteopenia to having osteoporosis. Fortunately, my doctor ran additional tests to find the root cause of the progression and discovered I had celiac disease.
If you were diagnosed, who made the diagnosis?
My OB/GYN ordered the initial blood test that showed I had celiac disease. She referred me to a gastroenterologist to perform an endoscopy to confirm the diagnosis.
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?
After receiving the results of the bone density scan that showed I had osteoporosis, my diagnosis came quickly. The results of my blood test for celiac disease were “off the charts.” I then had an endoscopy to confirm the diagnosis.
I had likely been asymptomatic for some time, however, and am grateful my doctor dug further after receiving the results of my bone density scan.
Do you believe anything could have sped up your diagnosis? If so, please explain:
I was asymptomatic and have no family history of celiac disease that I am aware of, so I don’t think my diagnosis could have been sped up. Now that I have been diagnosed, and understand the genetic link of celiac disease, I have encouraged my family members to get tested.
Describe your experience with living with celiac disease:
Like many stories that I’ve read, I received a few pages of so-so information from my doctor upon diagnosis and a recommendation to work with a dietitian. I did work with a dietitian and am so glad that I did. From her, I learned about the disease, a gluten-free diet, and where to find reliable sources of information about celiac disease. The information that my doctor provided would not have been adequate had I relied solely on that.
Since diagnosis, eating at home has been easy. I have been able to modify most recipes that I made prior to my diagnosis to be gluten-free. Eating out was a big part of my social life prior to diagnosis, and something I’ve had to learn how to navigate. I’ve learned what questions to ask at restaurants and have found a few new favorites.
I do miss being able to spontaneously stop at a new restaurant or meet friends when I haven’t had a chance to research the restaurant first. Now I try to do activities with friends that don’t always center around food, such as hiking or simply meeting for coffee.
Is there anything else you’d like to add to your story?
Celiac disease doesn’t always mean the typical GI symptoms that I thought of. Since my diagnosis, I’ve encouraged my family members to get tested in case they have CD and are asymptomatic like I was.
