Describe your life prior to diagnosis:
Prior to my diagnosis I was the epitome of health. I was a marathon runner, slim, and all around healthy until I experienced a major sinus infection that would not clear up and eventually progressed to meningitis. Once the meningitis was treated with several rounds of strong antibiotics, many new and alarming symptoms began to appear, like excruciating heartburn, which I had never experienced before. My life took a complete turn, but I refused medications that would mask symptoms and instead opted to be steadfast in getting answers.
How did you come to know (or suspect) that you have celiac disease?
When I started getting itchy rashes on my arms, legs, scalp and neck. I looked it up online, compared pictures and suspected celiac disease.
Who made the diagnosis?
After seeing 16 various specialists over the course of six and a half years, a functional doctor diagnosed me. I had a genetic test, blood test and a biopsy.
Do you believe anything could have sped up your diagnosis? If so, please explain:
Yes, doctor education on the variety of symptoms. I think many specialists were on the right track, but one doctor in particular said I was gaining weight, so it couldn’t possibly be celiac disease. They said, “this is a childhood disease in which growth is stunted.” The fourth allergist I saw said, “I just do not see anything wrong with you, you may need to see a psychologist,” even though all my diagnostics tests showed something was seriously wrong. I was near organ failure.
Describe your experience with living with celiac disease:
Once I was correctly diagnosed, my experience living with celiac disease has been a mixture of quite easy and a little challenging!
I think it has been easy because I love all the things that can be eaten, especially vegetables. There are so many substitutes these days for different pasta noodles, or if you need to bake a cake for a special occasion, etc. By nature I am a planner and a doer, so I just did what it takes to get back to being healthy again.
The challenge is other people! So many people think a gluten-free diet is just a fad. So many just don’t understand the seriousness of celiac disease.
Is there anything else you’d like to add to your story?
My father had a lot of symptoms similar to the ones I experienced, but many of them were much worse as he is much older. He tested positive for celiac disease and now lives a symptom-free life after he began following a strict gluten-free diet.
