Describe your life prior to diagnosis.
For the past four to five years I faced a large list of symptoms, and that list only grew longer and more intense as the years went by. At first, I had hyperthyroid symptoms of weight loss, heat insensitivity, fatigue, hair loss and was found to have ‘silent thyroiditis’ about a year into my symptoms starting. Silent thyroiditis can pass with time and usually only lasts a year or two, so as soon as that was found it was gone, and my symptoms just got worse and worse. Countless doctors appointments and tests later I still had no answer to what was causing all these issues that deeply impacted my life. It got to the point where my hair had thinned out dramatically, I was so intensely fatigued I routinely slept 16-18 hours on my days off, and my frequency of migraines and headaches had increased to nearly every day for 8 months straight—among other symptoms as well.
Now that I started being fully gluten-free I haven’t had a migraine in my first few weeks! My headaches and abdominal pain have been much more manageable and my days are no longer plagued with gas pains! I’m hopeful for more improvements as time passes and for the celiac disease research that has been ongoing!
How did you find out that you had celiac disease? Did you suspect it beforehand?
In 2010, my younger sister, Adison, was diagnosed with celiac disease while staying at our state’s children’s hospital. For the first two years after her diagnosis our whole family went gluten-free and would eventually swap to just my sister being gluten-free. After Adison was diagnosed I remember having my celiac disease blood screening and that resulting negative. Little did I know, almost 15 years later I’d join her in being diagnosed with celiac disease! I’d been experiencing a long list of what I now know to be celiac disease symptoms.
For five years I went to primary care, specialists that rarely had any answers about my symptoms or how to help lessen their severity. In April 2024 I was finally about to find a gastroenterologist and had a blood celiac disease screen (again negative) a colonoscopy and endoscopy scheduled quite quickly. Since my blood screening was negative again I had virtually zero suspicion that I’d have celiac disease but on July 1st I got a call from my GI diagnosing me with celiac disease.
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?
My gastroenterologist made the diagnosis after a negative blood celiac disease screening. He had also scheduled me for an endoscopy & biopsy for some of my other GI symptoms and biopsy showed celiac disease!
Describe your experience living with celiac disease.
Now that I’m fully gluten-free I haven’t had a migraine in my first few weeks! My headaches and abdominal pain have been much more manageable and my days are no longer plagued with gas pains! I’m hopeful for more improvements as time passes and for the celiac disease research that has been ongoing!
As someone who lived most of my life supporting my sibling with celiac disease before my own diagnosis, it has been so helpful to have my sister as a support system as I go through what she did when she was first diagnosed. As a nurse I luckily had a knowledge of celiac disease to draw from after diagnosis and my friends, family, and partner all have varying degrees of knowledge about celiac disease, being gluten-free, and how to support their celiac disease loved ones. The support of those in my life have made all the difference with my diagnosis and my sister has been the biggest superstar through it all.
Do you believe anything could have sped up your diagnosis?
More frequent testing as I was growing up, since I have a sibling with celiac disease, as well as an earlier endoscopy with biopsy.
Is there anything else you’d like to add to your story?
I now work in the same hospital, on the same floor that my sister was admitted to all those years ago when she was diagnosed! How cool! The doctor that diagnosed her still works there too!
