Autoimmune Journey - Linsey's Celiac Story

Today sharing her autoimmune journey is Linsey! Her story is relatable and inspirational for anyone struggling with an autoimmune disease. So many of us can relate to the emotional and physical roller coaster that dealing with an illness can bring. Enjoy her story below!

Tell us about yourself:
My name is Linsey (a.k.a lilmissceliac), and I was born and raised in West Michigan. I am a creative, detail-oriented individual who went back to school at the age of twenty-six after a difficult time in my life to pursue a BA in English Language & Literature and a minor in writing. After graduation, I completed two editorial internships where I worked with editors on fiction and non-fiction titles and then secured a full-time job in publishing. My hobbies include reading, traveling, hiking, cooking, journaling, spending time with family, and pursuing anything that brings beauty, wholeness, and health.

When were you diagnosed
I was diagnosed with Celiac Disease in July of 2014.

What was life like before and after?
Life before diagnosis was both rewarding and difficult. It was rewarding because I loved school, my job, my social life, and being free to travel and explore. I studied in London, Germany, Poland, and traveled most of Europe; I was a tutor in my college’s writing center; I wrote award-winning papers; I had a large community of friends and colleagues. On the flip side, in 2012/2013, I started not feeling well. My symptoms were severe migraines and fatigue. By the end of 2013 (graduation), I could not walk from the parking lot of my school to the building – I was that fatigued. I would even park in the faculty lot (which is close to the doors) and get ticketed just so I didn’t have to walk far. The year of 2014 (while working) was spent going to doctor after doctor, and no one could figure out what was wrong with me. I was losing weight quickly and was told to “eat more” or “go eat some cheeseburgers” which I actually did and got worse! I lost fifteen pounds in six months, fainted at work, and had multiple trips to the ER. By this time, I lost most of my social life. My symptoms were headaches, migraines, brain fog, weight loss, digestive distress, hormonal issues, extreme fatigue, etc.

Finally, in July of 2014, a functional medicine doctor told me to go gluten and dairy free. I was tested for Celiac and the Gliadin and Tissue Transglutaminase antibodies were sky high off the charts. After undergoing an endoscopy, Celiac Disease was confirmed. You would think by going gluten-free after diagnosis would get me feeling good right away, but my path to healing took time, rest, and figuring out a healthy diet. In the midst of this, I ended up losing my job and relied on the love and support of family during the healing process.

What has helped you the most?
After diagnosis, a few key concepts helped me which took time to figure out and learn. First, contrary to what mainstream doctors say, I found, that for me, a gluten-free diet alone will not heal the gut. I started eating gluten-free but did not feel better. I actually lost more weight and was down to 89 pounds. It wasn’t until I cut gluten, dairy, sugar, and grains (in addition to processed/packaged foods), which can be highly inflammatory, that I began to see improvement. The change in diet was difficult for me. I actually had to go through a grieving process and kept reverting occasionally to snacks. I loved my potato chips, soda, ice cream, sugar, and the freedom to eat whatever I wanted. Emotionally, I really struggled with it; yet eating real foods and finding the right supplements helped me finally gain some traction. Secondly, I had to learn to be kind, loving, and full of grace to myself. Chronic illness takes you on an emotional rollercoaster. When you are so sick that you can’t work, meet with friends, do all the things you used to, you begin to experience a broad range of emotions and feelings about yourself. So, there’s like this emotional part of the disease that can sometimes be more difficult than the physical symptoms. Meeting with a therapist and a few close family members and friends who understand the disease proved to be helpful. Remembering that my worth does not come from performing but from the One who created me and values me and loves me just because I exist is something I meditate on daily. Finally, I discovered the importance of movement. I began walking when I couldn’t do anything more, then I practiced yoga and stretching, now I do high-intensity interval training (burst training) for a short period of time per day. Combing diet, mindfulness, and movement was key for me after diagnosis.

Something positive/silver lining
As I’ve looked back over my journey, I’ve realized that Celiac Disease has made me more and more into the person I was created to be. It has taught me to love myself and be more loving, to slow down and live at a pace more suitable to me, to let go of my control and plans, to have compassion on the underdog because I have been there myself, to never take for granted health and wellness, to cherish my relationships with friends and family, to honor my body by taking care of it with real food, exercise, and positive thinking.

Favorite recipe/product
I have learned to love cooking and decided if cooking was going to be a big part of my life, I might as well have some fun and make art out of it (i.e. Instagram). One of my favorite recipes is a guacamole recipe my family and I developed. Avocados offer so many health benefits, are gut-healing, and most people love them. I enjoy guacamole as a snack with veggies, plantain chips, sweet potato chips or as a condiment on burgers. I love putting a dollop on boiled eggs or salads. I also enjoy Tessemae’s All Natural Dressings/Marinade/Dip. There are many different types with real ingredients. The products are non-GMO, vegan, paleo, gluten-free, sugar-free, and dairy-free. I used to make my own salad dressing, so this was a great find and time saver.

Advice for those with celiac disease
If I had to give advice to someone just starting out on a gluten-free diet, I would say to show yourself grace. It takes time, research, mistakes, and a lot of label reading to get it right. I’d also say to eat whole, real foods as the majority of your diet. Just because a product is gluten-free, doesn’t make it healthy. In fact, products can be loaded with sugars and starches and other anti-nutrients. Furthermore, the FDA established a gluten limit of less than 20 parts per million for packaged foods that are labeled gluten-free. This is a tiny amount, and should be safe, yet I believe some Celiacs could react to it. Finally, keep going and never ever give up. At my time of diagnosis, I felt like I was dying. I’ve learned that the body is this incredible, complex, beautiful machine that has the capability to heal if we honor it and live how we were created to live. I now find so much joy in helping others live as fully as possible.

Linsey has an amazing intagram account! Follow her here

If you're interested in sharing your story you can email me at livingnaturallyautoimmune@outlook.com! I'd love to hear from you.