Hello everyone! My name is Mia Razavi and I live in Palm Beach Gardens, Florida. I received my celiac disease diagnosis a few weeks before my 17th birthday; this is my story.
Describe your life prior to diagnosis.
Prior to my diagnosis, I struggled with several symptoms, which presented significant mental and physical challenges. I was diagnosed with OCD and symptoms of ADHD, which I had never experienced until the year leading up to my celiac disease diagnosis. I believe that because my small intestine was failing to deliver nutrients to my body, my brain developed imbalances causing these mental manifestations. On top of this, my body rejected just about every meal I consumed, leading to severe gastrointestinal pain and discomfort.
As an athlete, I noticed my symptoms intensify on the field. Before games, I would eat a cereal bar, unknowingly making myself sick through gluten exposure and enduring the consequences that followed. I had developed brittle bones, which led to calcification and intense bruising from even minor hits on the field. Each day after I came home from school, I felt like I had to get in bed and sleep, and on many days, I did. My fatigue, as well as my countless other symptoms, got worse and worse until I received my diagnosis and cut out gluten from my diet completely.
How did you find out that you had celiac disease? Did you suspect it beforehand?
Over the course of two years, beginning my sophomore year of high school, I spent a substantial amount of time in various doctor’s offices including those of primary care physicians and specialists such as neurologists and psychologists. On top of that, I had several situations of severe GI pain and abdominal cramping that sent me to the hospital, sometimes overnight. Despite all of this, I never had a medical professional suggest celiac disease. Oddly enough, my father mentioned the possibility of gluten intolerance. My diet consisted of plenty of carbohydrates, and I felt sick every time I ate, which led to this pattern recognition and eventual suggestion by my father. In April 2019, at the end of my junior year of high school, I was officially diagnosed with celiac disease.
Do you believe anything could have initiated your symptoms?
Absolutely. In hindsight, I am certain that my struggle with mono the summer after my freshman year of high school led to my sudden autoimmune response to gluten. I spent two weeks in the hospital with mono, so it goes without saying that I had an acute case. Not long after, I began experiencing symptoms of celiac disease, ranging from harsh joint pain to debilitating brain fog. My symptoms would intensify and multiply over the following months.
Describe your experience living with celiac disease.
Fast forward to 2024, I have been strictly gluten-free for over five years. Amazingly enough, my mental symptoms, including brain fog, OCD, and symptoms of ADHD, alleviated instantaneously following the omission of gluten from my diet.
My recovery has not been linear, but it has made me into the person I am today. Facing such adversity and adapting to my circumstances has allowed me to develop some of my best characteristics, including persistence, fortitude, and empathy. Becoming gluten-free has also allowed me to expand my diet, ironically enough. In an attempt to recover my body after years of malnutrition from intestinal and villous damage, I diversified my diet and paid attention to vitamins, minerals, and nutrients, all of which were, and still are, vital to my health. As someone living with this disease, I have been able to educate the people around me, including family, educators, and servers, and even help one of my good friends with her diagnosis.
What would a cure mean for you?
First, a cure would mean less isolation from social experiences. Counting on social gatherings to have safe food options can be next to impossible, so not having to worry about the possibility of gluten contamination would be life-changing. Some examples of places that can cause isolation through lack of safe food options include restaurants, concerts, weddings, cruises, and other traveling excursions, just to name a few.
Additionally, gluten is not limited to food and drinks, but is also commonly used in makeup and body care like lotion, shampoo, toothpaste, you name it. Being able to use these everyday items without having to check twice for ingredients would be substantial for my quality of life.
Last but surely not least, a cure would also mean that there is hope for me and everyone else in the celiac disease community to pursue the “normal” lives that many of us had prior to symptom development and diagnosis.
What do you wish people understood about celiac disease?
I wish people understood that eating gluten-free is not a diet or a fad—it’s a treatment for a serious and potentially life-threatening autoimmune disease. I also hope that those who have this condition are not afraid to self-advocate when necessary, whether it be at the doctor or elsewhere. Personally, I find this especially important in restaurant settings. Avoiding cross-contact is vital, as just one crumb can lead to weeks of symptoms.
