You were diagnosed with Celiac – and several other major disorders including POTS and a rare type of Adrenal Disorder at the age of 13. Can you share a little bit about your journey to figure out you had Celiac Disease and other chronic illnesses?
Getting diagnosed with each of my disorders was just as difficult as the last. It was always hard for me to understand what was normal and what was not. For most of my teenage life I always dealt with some sort of uncomfortable or serious symptom. For celiac disease it was digestive issues, weight loss, joint pains, aches, mouth ulcers, migraines, easy damage to skin, and much more. Luckily, my celiac disease diagnosis didn’t take long since my mother was diagnosed one year before I was. My doctor did not figure out my illnesses themselves. It took my mother and I years of extensive research and advocating for myself until I finally got a diagnosis. This was the same for every following diagnosis. Unfortunately, each diagnosis was harder on my body than the last. Eventually, I got diagnosed with my adrenal disorder as well as POTS a few years later. These were hard to overcome but got better with medication, time, and rehabilitation of my own body.
What do you wish you had known when you were first diagnosed with Celiac Disease?
I absolutely wish I knew that it would get easier. I was so hard on myself in the beginning and I really thought it’d make my life tough forever. Sure, life is tougher when you have to be gluten-free, but time and experience really does make it easier.
What questions do you wish you had asked when you were first diagnosed?
I wish I asked if there were other auto-immune diseases or various disorders that could be associated with celiac disease. I was first given my celiac disease diagnosis at 13 and I was told I’d feel all better after that. That wasn’t the case, obviously, since I had a few more disorders that still needed to be diagnosed.
Do you have any advice for friends or family of someone who was just diagnosed with Celiac Disease?
My best advice is, try to be as compassionate and willing to understand as possible. Those who are newly diagnosed already have a hard time coping to this big life change. They’ll need the unconditional love and support of their friends and family more than ever.
You’ve recently turned 21 – congrats and happy birthday! A lot of social interactions happen at bars and restaurants. Do you have advice on how gluten-free folks (both teens and young adults) – who don’t want to feel different or like they are high maintenance – can enjoy these social outings with friends?
Absolutely! After almost 10 years of gluten-free experience my best advice is to never leave food options up to other people. Whether you’re going out with friends or meeting someone for a date, make sure you only commit to a place where options will be involved. If it’s a unique situation like a ballpark that doesn’t have a lot of options, always bring some of your own snacks to have on hand.
You’ve been Celiac since you were a child. What would you tell children who have just been diagnosed with Celiac or a gluten intolerance?
Never be ashamed of have celiac disease or being gluten-free. It’s just a very small part of you! Anyone who gets to know you will see that and want to be a part of your life because of who you are. Being gluten-free will just get easier as you go!
You love traveling. Can you share your favorite tips for traveling?
Research and preparation is key! I always research the restaurants in the city I’m going to. On top of that, I always look up a nearby Whole Foods or I bring a ton of my own snacks just in case. Preparation is everything!
What’s one misconception you think people have about celiac disease/being gluten-free?
I think most people think being gluten-free is about the food, when in fact it is about the social limitations that this change of diet causes. If more people understood how much harder it is to socialize when being gluten-free then I think we’d all be taken more seriously.
Any words of advice for gluten-free folks heading off to college next year?
Don’t feel bad about eating gluten-free frozen meals if you don’t have time for making your own food. Some dorms may only offer a microwave in the first place. Whatever way you can eat gluten-free and feel good doing it is all that should matter for you.