Describe your life prior to diagnosis:
My life was full of ups and downs prior to my celiac disease diagnosis. The summer before I got diagnosed, I was in treatment for a life-threatening eating disorder (ED). I am no longer ashamed of coming forward about this because it is now part of my celiac disease story.
I had GI issues growing up, but it only got worse in college, to the point that some days I was in so much pain that I could not even stand. Every day I was nauseous and exhausted, and it all took a toll on my mental health. But doctors and staff would dismiss my symptoms, assuming it was just my ED. Even though they told me my symptoms would get better, they never did.
I didn’t know why I was like this, but after many doctors dismissed my symptoms I convinced myself I was just dealing with permanent damage to my body from my ED. Eventually I knew something wasn’t right and I fought hard for answers.
How did you come to know (or suspect) that you have celiac disease?
I actually never knew or suspected it, because my doctors hadn’t suggested a food intolerance or anything similar to begin with. They said it was likely gastroparesis. I was surprised when I got an email saying my biopsy showed I had celiac disease and chronic gastritis.
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’ve had symptoms all my life, ranging in severity but getting more severe about four years ago. I unfortunately had to deal with a lot of medical gaslighting before I got answers due to my mental health.
When I was diagnosed, I was told, “You have celiac disease, just stay away from gluten,” and rushed out of the doctor’s office without any more information.
Do you believe anything could have sped up your diagnosis? If so, please explain:
If the doctors had listened to me originally or investigated my concerns further, I would have likely been diagnosed years ago.
I also wish I had been aware of the symptoms associated with celiac disease, because then I might have been able to better advocate for myself.
Describe your experience with living with celiac disease:
I have been diagnosed with celiac disease since March 2022. I ate gluten for 20 years prior to my diagnosis, so it was a devastating shock to me. The hardest thing about this is going from dealing with a restrictive ED for years, with medical professionals and therapists telling me not to restrict, to suddenly being told I needed to restrict after all. They told me not to read food labels and wouldn’t allow me to see them as it would fuel my ED, but now I have to read food labels all the time to stay safe. It’s a constant battle for me.
I roam around grocery stores feeling hopeless. I excitedly rush to something that says gluten-free, only to read the back label to see there is a cross contact risk and have to put it back. Holidays and birthdays are extremely difficult when I can’t eat what everyone else is eating. Sometimes I feel like celiac disease makes the best parts of life the worst parts of life.
It’s hard when people don’t understand the severity of celiac disease. I’ve been asked “why can’t you just eat the icing off of this cupcake?” or “just eat around the croutons?”
While I lead a very strict, gluten-free lifestyle, I still deal with serious symptoms and am currently undergoing more testing. I keep trying to remind myself that healing takes time. I am glad to have my friends, boyfriend, and family, who all support me and do their best to keep me safe. If one good thing has come out of this experience, it’s realizing how much people care and are willing to go out of their way for me.
Is there anything else you’d like to add to your story?
I will never give up advocating for those with celiac disease in hopes that more people understand how serious this autoimmune disease is.
