Describe your life prior to diagnosis.
I was a healthy happy teenager—very active and enjoying my schooling. Then in my last year of high school it all changed. I became sick all the time, was always bloated and in pain. No one knew what was wrong with me, so I lost hope. I withdrew from my friends and my social activities and eventually stopped eating entirely because it was the only thing that made me feel somewhat better.
Prior to my diagnosis, I had absolutely no idea celiac disease existed. After seeing nine different doctors, who all diagnosed me with stress, anxiety, and female-induced issues, I finally found a doctor who sent me immediately to a gastroenterologist, who finally sent me for an endoscopy. Within 24 hours of that being performed, my diagnosis was concrete.
How long did it take for you to get diagnosed since your first symptoms?
A gastroenterologist made the diagnosis, with help from my current general practitioner.
It took almost a year for me to be diagnosed, with hundreds spent on doctors and tests! I honestly thought I was going crazy—they said there was nothing wrong and it was all in my head, that I was a typical teenager with general anxiety. That psychological load meant that I withdrew from everyone around me, I stopped going out, I stopped eating, and I locked myself away, wondering if this would be how I felt for the rest of my life.
It was incredibly isolating, which meant my mental health also went on the back burner.
Do you believe anything could have sped up your diagnosis?
Absolutely—unfortunately, the healthcare system in Australia is only just now catching up, even including celiac serology into routine blood work when individuals present with abdominal issues. If the first doctor I had gone to had just run a celiac test or sent me to a specialist, I would have avoided months and months of psychological and physical distress, and my body would have gotten the help it so desperately needed earlier.
Describe your experience living with celiac disease.
It was incredibly isolating, especially once I learnt about cross-contamination! So much of my social events revolved around dining out, or fun dinners at my friends houses—much of which I can no longer do.
I find it exhausting some days to constantly be vigilant with every single thing I eat, drink and product I use, and I do feel that I have limited trust to anyone around me preparing my food.
I am my own advocate and I am all my body has to ensure a long and healthy life. It might seem exhausting but places like Beyond Celiac are so incredibly helpful and provide hope for the future!
What would a cure mean for you?
A cure would mean simplicity [and] easy living—no stress, no anxieties around food, and not feeling so isolated. Gluten-free foods are also significantly more expensive than regular food—for something we can’t help, it seems pretty unfair.
Please always advocate for yourself and your body—if something feels wrong, don’t let anyone push you away until you get to the bottom of it. You know yourself and you know your body, you are capable and you are strong!