Content warning: discussion of eating disorders.
Describe your life prior to diagnosis.
I’m 16 years old from Philadelphia and I am a junior in high school. When I think about my life prior to my diagnosis of celiac disease, I honestly can only remember it vaguely. I was diagnosed when I was only four years old, 12 years ago. Because of my undiagnosed celiac I hadn’t grown for the first five years of my life. It angered me that as a five year old I was smaller than the smallest pre-K three year old at school, due to stunted growth—a symptom of celiac disease. I felt different that I couldn’t grow and just be normal, as four year old me would have said. After an endoscopy, endless tubes of blood work, and a four-hour intravenous growth simulation test, all which were traumatic for me at such an early age, the doctors finally figured out that I had celiac.
How did you find out that you had celiac disease? Did you suspect it beforehand?
When it was clear that I wasn’t growing my parents consulted an endocrinologist at Children’s Hospital of Philadelphia. He was about to prescribe growth hormone shots to help me grow, but just to be cautious he ran a celiac blood test panel. The IgA-tTG test came back astronomically high. He told my mom that I had celiac disease and immediately ordered an endoscopy to confirm my diagnosis.
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?
It took about one year for him to uncover that I had celiac since my first appointment. When the endocrinologist called my mom with the blood test results, he expressed surprise that I had celiac because I had no GI symptoms at all. As I explained above, my only symptom was that I had not been growing. Because my sister had been diagnosed with growth hormone deficiency two years prior, he said he thought for sure that this would explain my failure to grow.
Do you believe anything could have sped up your diagnosis?
The doctor shared with my mom that there are many symptoms of celiac other than GI problems and that it was important for doctors to “rewrite the medical textbooks” to reflect the wide variety of symptoms suggesting this would make diagnosing celiac easier and faster.
Describe your experience living with celiac disease.
My celiac diagnosis led me to feel different and excluded from all my friends and family because I was not allowed to eat the same foods as everyone else. Today I am aware that young children do not have the mental capacity to process stress so as with other children I experienced my anxiety as many fears… a fear of thunder, fear of the rain, fear of losing my family and my dogs Cammy and Toby, fear of losing my lunch box (then what would I do?) … fear after fear.
For most of the first 10 years of my life, my atypical form of celiac disease was out of control. Since I went gluten-free and started growing I had no symptoms at all, but based on the bloodwork, the doctor told me and my parents over and over again that I must be getting glutened. If it wasn’t from the food, it must have been the shampoo or the suntan lotion, the doctor explained. We had been so careful, yet there were indications of gluten in my body. I felt so blamed by doctor and felt so sad and scared that I wasn’t doing a good job of staying gluten-free, no matter how hard I tried.
Finally, Dr. Fasano, a world-renowned specialist in celiac disease, determined that I wasn’t exposed to gluten and I hadn’t been doing a poor job, but that my body had been hypersensitive to miniscule amounts of gluten that are in gluten-free foods. He changed my treatment plan to a severely restrictive diet with zero processed foods for four months. This meant my family basically had to make my food from the garden. As a 10 year old, this was heartbreaking, having to miss Halloween and feeling left out of all social situations that revolved around food. I believe people do not notice how much food plays a role in life until you’re deprived of it.
In 2020, I developed a severe case of anorexia. As I lost more and more weight, I lost more and more of myself. I became addicted to being as small as I possibly could. This led to depression and a phobia of food and weight gain. I believe the forced restrictions of my diet since such an early age contributed to my eating disorder. One function of my eating disorder has been to block out the sad and angry feelings, all the times that I was told, “You can’t eat the pretzels at the mall, you can’t eat the funnel cake on the boardwalk, you can’t eat the donuts…” and so on. With a non-processed food diet, I was not allowed to have typically gluten-free kid friendly foods like potato chips or ice cream.
Now two years later, I am finally in stable recovery and my celiac is under control. I am grateful to live my life with so much more freedom, appreciating my hard-earned ability to live in the moment, having fun with my friends, staying out late on the weekend nights and feeling like a normal teenager.
Is there anything else you’d like to add to your story?
Over these years I have developed a passion for helping others and plan to study psychology in college. I aspire to help others who experience similar challenges to ease their journeys.
I am so thankful for the support of my therapist, my mom, dad, and sister and my two dogs who have supported me through all these years. `
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