Celiac Disease Awareness Month 2020: Community is Everything

Disclaimer: I am not a licensed medical doctor or counselor. All of my posts are from my own personal experiences in the areas of my own health and wellness.  My posts are meant to inspire you in your health journey, but do not qualify for professional medical advice or diagnosis. Please consult a licensed medical professional or counselor. I cannot be personally held responsible for any advice you take from my blog postings and implement into your life without consulting a medical professional first. 

Can you believe it is the last day in May? I feel like I say this every year, but May seriously comes and goes by so quickly.
I do not know if it flies by because the semester is winding down, and the summer is about to pick up. If it is the subtle change of the season from spring to summer. The goals, trips, and plans for summer start ramping up, even in the middle of the pandemic. Either way, June is creeping in and Celiac Awareness Month is winding down.

When it came to the final post for the month I thought about a variety of topics I could write about. After walking/running my Virtual 5K through Beyond Celiac with my boyfriend this past weekend, the topic that kept coming to me was the the importance of community.

When I was first diagnosed I felt very much alone in the beginning.

I was living away from home and in a college residence hall as a first semester transfer student. I had a meal plan, but did not know what were safe options for me in the dining hall, and could not get any assistance from dining or disability services at the time. I was overwhelmed and frustrated when I went to the grocery store, and after an hour ended up leaving without anything.
Mostly, I was grieving the life I once had. A life of freedom and convenience when it came to food. I was having to relearn how to eat in a lot of ways, and trying to gain understanding on what this disease entailed.
When I was not busy with my college classes I was busy researching options, and the in’s and out’s of my diagnosis. Back then Celiac Disease was not as understood as it is now. I was not referred to a nutritionist or a dietitian, though I wish I would have been. Instead they told me to google things during my diagnosis appointment.

When I reflect on college, this semester obviously stands out the most compared to the rest. I define it as my “make or break it semester”, because of all the risk factors at play. Not only was I managing my new diagnosis but also being at a new school, and living away from home for the first time. Thankfully home was only a forty minute drive away, but I spent all the weeknights and most weekends on campus.

My turning point was when I realized I was not alone in this celiac life, and that there was a community of people out there just like me. Here are the events that personally helped me grieve during the first six months of my gluten free life.

1) My mom had worked with a Nurse Practitioner years prior to me being diagnosed, who also had celiac, and her and her daughter both lived in the area where I was at. The daughter and I got together one evening to talk about things since she went to the same college as I did, and we made my first gluten free pizza. To this day I still use the same mix we used that night.

2) I started following and connecting with people who had Celiac Disease on Twitter, and started reading blogs and watching YouTube videos. It was encouraging to know that I was not the only one with this disease. In the middle of adjusting to my diagnosis I had the mindset of “I was the only one.” Grief is messy and weird like that sometimes.

3) I went to a Gluten Free expo that was sponsored by Ingles Supermarkets. Seeing all the people at this event, and trying samples of so many gluten free goodies was very encouraging to me at the time. I even met the dietitian for Ingles, who I had connected with on Twitter prior, and who is the one who told me about the expo.

These three occurrences in the early days of my Celiac journey were crucial to me healing emotionally with my diagnosis.
After I had experienced these three things it was much easier to embrace the new lifestyle versus holding onto the old one.

“When it came to building my Celiac community, it was not just about identifying and leaning on those with Celiac Disease, but also my family and friends.”

Celiac disease affects your loved ones. When it comes to your safety and health, and food being such an essential need, it is bound to impact things.
You can read a post I wrote a few years ago on this topic here.

I was diagnosed in October, and that Thanksgiving was the most stressful for my mom and I, but she was determined to have a traditional but Gluten Free Thanksgiving. We did not want to have to go through the same process for Christmas with researching things, so we developed a new tradition as a family of having Steak and Shrimp for the main course, with baked potatoes for Christmas dinner. It was easy and we knew it would be safe. We loved it so much we decided to make it our thing.

These are my two favorite meals of the year because not only do I love the holidays, but I am always reminded of the hard work and many years it took for us to get to this place of having a safe and delicious gluten free Thanksgiving and Christmas meal.

These holiday meals are just one example of how my family and friends help me in managing this disease. Typically they always have me choose the restaurant, and where I feel safest eating at. If they cook me something they make sure to take all precautions with washing the cooking materials prior and buying safe ingredients. Furthermore, they have always remained patient and never made me feel like an inconvenience.

I mentioned on my personal instagram last weekend that

“a celiac is only as strong as the community that surrounds them.”

Looking back, I know establishing a community was a big part of me healing emotionally and mentally with the diagnosis of this disease, and adjusting to a new lifestyle,

If you are newly diagnosed, have a family member or friend that is, know that community is everything with managing this disease.

If you are the celiac, know that you are not alone and there are thousands of people just like you and know exactly what you are experiencing.

CONNECT AND LEAN ON THEM!

If you are a support person and advocate, know that you are a vital part of your family member or friend managing this life long disease and coping with it.

You matter in their adjustment and healing.

I dream of the day we Celiacs can be “normal” again, but until that day keep raising awareness and advocating my friends.

Until next time,