The Celiac Saga
Most kids aren’t pen pals with their doctors. Most kids don’t wish for a diagnosis when blowing out the candles on their birthday cake, and most kids probably aren’t “mutuals” on Instagram with their local hospital registration workers. But growing up with undiagnosed Celiac Disease, I quickly found that I was not “most kids.”
Let’s go back to nine years ago, the very beginning of the hardest battle I would ever fight. It is 2007, and I reluctantly drag my light-up sneakers through the doctor’s office as my mother explains to me that I will be getting my blood drawn for the first time. At seven years old, I am naïve. I know of illness, I know of pain. I know of the sick kids fighting for their life in the children’s hospital that my school participates in fundraisers for, but at seven years old, I never in my wildest nightmares could fathom that I would ever be one of those kids.
Now it is 2009, and the light in my eyes is slowly fading, but you can’t tell – especially not since they’re hidden behind thick prescriptions lenses. My list of specialty doctors double, triple – quadruple even. The office of my gastroenterologist becomes a temporary home, seeing as I nearly spend more time there than I did at school. Test after test, treatment after treatment, my doctors try hopelessly to cure a tired little girl of her horrific stomachaches.
The new decade only brings new obstacles, and by 2011, I have completely lost all hope for a healthy future. Pulmonary, optical, psychological – it seemed as if nearly every part of my body was failing me, consequently destroying my optimism in the process. My friendships became non-existent – the sicker I got, the more my support system faded, as many children just simply reject anything that isn’t part of their relatively stagnant lives. My stomachaches had faded to a dull pain, but my fight was far from over. At eleven years old, I was finally wise enough to understand this, and the realization launched me into a spiral of anxiety and depression.
I enter high school in the fall of 2013, unaware that the next few years of my life would be by far the most challenging. The already hard enough transition to an unfamiliar school pairs with my new onset of migraine headaches to create a cocktail of catastrophe that I am forced to swallow and my life transforms into a balancing act between school, sleep, and stress. I exhausted nearly every treatment plan the neurology department had to offer, but the sharp pains lingered alongside me throughout the next year like a phantom.
By 2015, I am sicker than I have ever been, and there are moments when I fear for my life. Within a year, I have visited the ER three times, battled hyperthyroidism, fought a severe medication interaction, and faced my first chronic illness diagnosis – Neurocardiogenic Syncope. Nine vials of blood are sent out in a last ditch attempt to uncover what plagues my body, but luckily, this time, a Complete Celiac Panel was included in the order form. Later, a biopsy would confirm what my unfathomably high bloodwork would reveal – I had a serve case of Celiac Disease.
I write about my journey with brutal honesty because I believe it is absolutely imperative that the world understands just how much pain and suffering Celiacs endure in the years before diagnosis, especially teenagers. We don’t get a chance to grow up – our maturation is forced to increase exponentially within months of experiencing symptoms. And although finally getting the diagnosis of Celiac Disease turns our lives around, it will never undo the past. The wounds that stemmed from those long and painful years don’t automatically heal.
For the most part, we face Celiac Disease and the years before diagnosis alone. Sure, we have our guardians and potentially friends or siblings, but we have limited support from anyone who actually understands what it is truly like. A strong support system among teens is absolutely necessary but hardly has been utilized. I’m hoping that I can change that.
In the past few months, I have created The Celiac Saga, an online support network for teens with Celiac Disease that aims to provide support, information, and awareness for them. While it is just in its beginning stages, I hope that one day, this network can help teens across the globe with some of the same challenges that I have faced. The journey to a diagnosis is long and hard, and the transition to a strictly gluten-free diet isn’t much easier, but The Celiac Saga serves to provide these teens with one vital message:
You are not alone.
Valerie Kraft is a member of Riley Hospital for Children’s Teen Leadership Board for adolescents with chronic illnesses and the creator of The Celiac Saga. Valerie is currently a junior in high school, and she has a passion for helping to spread awareness about her various chronic illnesses, including Celiac Disease.