Describe your life prior to diagnosis.
I was always considered a little iron-deficient. I had bizarre rashes—my mother decided only Dove soap and Tide laundry detergent could be used. I took allergy meds and received shots until I was able to express that they really didn’t help. I still itched my eyes until the whites peeled a few times. I had vertigo, even in high heels and motion sickness is a reality that still keeps me off spinning amusement rides.
I was a child who walked at nine months old, never needed much sleep, and preferred to barely eat. I was intelligent but often in a fog. I was skinny with a bloated abdomen. My hair was a hollow shaft lacking protein.
I was diagnosed with juvenile arthritis by a doctor. I began sleeping in and never feeling awake until night—the farthest time from last eating. I could smell things others couldn’t and still can. I had chronic sinus drainage.
I was often constipated and told, “this is normal.” I had eight miscarriages. I developed wrist issues and was told the neuropathy was carpal tunnel. My eyes began to always be reddened. I had recurrent canker sores. Seasonal allergies were becoming year-round. I had a dense tissue lump in breast that was diagnosed as a fibroid from age 17-47. It diminished after going gluten-free.
The most significant lead to diagnosis was asking my doctor if it was true that crunching on ice was a sign of mineral deficiency. My then-six-year-old chimed in that I often had two cups of ice. That’s when the doctor disappeared briefly, then returned with a questionnaire. One of the questions was, “do you get easily irritated?”
I told her I was irritated at the odd questions and wanted an antibiotic for the unusual lump in the back of my neck—she said it was allergies. Turns out, I had pica. This led to further testing and eventually a biopsy diagnosis of celiac disease.
How long did it take for you to get diagnosed since your first symptoms? Do you believe anything could have sped up your diagnosis?
47 years. Automatic childhood testing. I was “hyper” and barely ate, but happy! My mother refused meds and just had to follow me around to keep me safe.
Describe your experience living with celiac disease.
The week I was diagnosed, I saw a gluten-free expo was in town. I felt like God was telling me to not worry about what to eat.
I became more aware, more energetic like a teen, and felt like I finally understood myself.
What would a cure mean for you?
A cure would mean that my future families would not have to experience misdiagnosed celiac. I hope to see improvements in our regulated standards for foods.