When considering major diseases and diagnoses, celiac disease seems to be an easy fix. — just eat gluten free. It is quite simple. We don’t need to undergo therapy, tedious treatments, or risky life-threatening surgeries. However, this doesn’t undervalue the fact that celiac disease is still a disease and autoimmune disorder that modifies our lives quite a bit and takes some time to adjust to.
When I was first diagnosed with celiac disease, I was truly grateful it wasn’t something worse, and I was grateful the problem behind my symptoms was identified. I was finally able to fix the problem behind the ongoing symptoms that affected my everyday life. I thought “Well, time to do some gluten free shopping and research” and left it at that.
It didn’t mentally and emotionally affect me until months after my diagnosis. Many people might roll their eyes and say others have it worse. But, at the end of the day, I was mentally and emotionally struggling because of my diagnosis and what I was feeling was out of my control, for the most part.
Furthermore, I would feel guilty for feeling upset, frustrated, and sad because surely there are others who do have it much worse. But, I came to realize celiac disease affected my life since the age of 5 and probably will forever.
There are some celiac disease patients that don’t care and don’t make it a huge part of who they are. But, for me, it has become a huge part of my life, and I realized what you are feeling shouldn’t be undervalued because other people have it worse.
I didn’t emotionally struggle because of the symptoms that I would experience after accidentally having gluten or cross-contact. I struggled mentally and emotionally because of the huge change in my social life.
I quickly noticed that others would dismiss, undervalue, or shut down my needs because of celiac disease. When people say “You can have one bite” or “You’re being dramatic” it was hurtful because I spent years suffering and in pain and finally found a solution to the problem that would quickly be shut down.
Other times family members, friends, colleagues, and coworkers, wouldn’t care if I could eat or not while at a social gathering and it would upset me. Food is a huge part of life — culture, experience, celebration, networking, socializing, etc.
The worst experience I had was when our family jumped in the car last minute to grab food after a long day and decided where to eat while in the car. I announced I couldn’t eat there and no one seemed to care. We went anyway and I was quite literally fighting tears the entire time. I felt like a brat, but couldn’t help the emotions I was feeling. I soon came to realize it was because the people I cared the most about didn’t care about my needs and they ate while I sat there and watched.
While this may sound a bit dramatic, it was what I felt at the time. Many situations like so occurred after that, and I have learned from them and begun to realize celiac disease is here to stay and I might as well enjoy the life I live while I can and stay positive, always.
So, here is how to create a life you love with celiac disease if you have been struggling to do so.
Tune Out the Unsupportive
It’s easy to get frustrated with someone that does not think celiac disease is real or thinks you are following a societal belief and are being dramatic. I have learned these are the type of people that are close-minded and normally just let them be that way. (lol) I don’t invest myself in them, especially if it is someone I just met and they aren’t willing to learn about.
My family and close friends are extremely supportive, but when I do have a family member that does not believe in it or often forgets about it, I just remind them and eat only where I can eat. For social outings, such as meeting at a restaurant, I ensure I can eat there and if I can’t, eat before, or I go where I can eat.
Get Creative
If you have celiac disease, you know the importance of food creativity. From throwing gluten free bread into your bag while rushing out of the door, to ordering a $15 bag of gluten-free flour, it’s the outcome that matters.
If it’s one thing that I have learned about myself after being diagnosed with celiac disease, it’s that it has sparked my creativity. Get creative with recipes, meals, and cooking. Enjoy the new recipes you come up with and share them with family and friends. Learn and grow from your mistakes. Create one new recipe each week, or bake something you have never baked before and enjoy it with your loved ones. You will be surprised at how fun and enjoyable it is.
Travel To Eat
My favorite thing about celiac disease is that it has pushed me to travel. I was always interested in a life full of travel but became even more interested after I was diagnosed with celiac disease. Celiac disease has ironically turned me into a foodie. I want to try new and different food in new and different places.
Research places you have always wanted to travel to and look into the food options in and around the area and vice versa — come across a gluten-free restaurant or bakery you absolutely need to try? Plan a fun trip, eat all the amazing gluten-free food, tour the city, and check out all the cool sights and places you are interested in while doing so.
Network and Learn
Celiac disease does not need to be sad and boring. There are plenty of social events, seminars, and classes that will allow you to meet, interact, socialize, and have fun with other celiac disease patients, and learn more about the disease and helpful resources.
Here are a few fun celiac disease/gluten-free events:
Check out past and upcoming events here.
Helpful resources for celiac disease:
- Celiac Disease Foundation
- Beyond Celiac
- Find Me Gluten Free
- National Celiac Association (NCA)
- Celiac.com
- Gluten Intolerance Group (GIG)
- Cure Celiac Disease
Celiac Disease / Gluten Free Blogs
Spread Awareness
Last but not least, spread awareness! Instead of talking about the restrictions and adjustments that come along with celiac disease, shine a light on it and spread awareness to lead to a more diverse community with more yummy, safe, gluten-free options.
