What would you do if someone suggested changing your whole lifestyle? As a 29-year-old I never thought I’d be living life with celiac disease. Heck, who would ever think that they’re going to be 1 out of 133 Americans with it? It was a full year and a half of feeling sick before I was diagnosed with Celiac. I went from eating gluten every day to changing my whole lifestyle overnight.
The Road to a Celiac Diagnosis:
In November 2020 I had my daughter who brought so much joy to our family. My Husband Nick and I couldn’t wait to start our journey of parenthood. Quickly it became difficult to enjoy the little moments when you felt sick daily. Two months postpartum I realized the symptoms I was having were maybe no longer just related to pregnancy and having my first baby. My symptoms progressed over time and consisted of headaches, dizziness (I felt like a bobblehead at times), trouble focusing, feeling sick after eating, no appetite, tiredness, body aches, ear pain, chest pain, and tingling in my body.
I had numerous appointments and testing done with Family Doctors, Ear Nose & Throat, Neurology, Immunology, Gastroenterology, & Physical therapy. I was not going to give up, I wanted to get back to enjoying everyday life.
The symptoms I kept track of daily to try to narrow down what was causing my symptoms. As they progressed and I wasn’t getting answers, I turned to the web. This turned out to be the WORST idea! Looking up your symptoms, it basically says you’re dying ha. There were times when I felt like nobody heard me or listened to what I was saying. I kept my head high and I continued to have my family and friends pushing me to continue to advocate for myself.
When I saw gastroenterology, we decided to do an endoscopy to check for an ulcer.
I went in for an endoscopy to eventually get a letter saying they were suspicious of celiac sprue. When the doctor called to tell me, I was relieved to finally have a potential diagnosis. It was a diagnosis that I knew I could live with, but I was not really prepared to live my life without my favorite foods! I also knew it was going to be a continued journey ahead.
I was considered a Seronegative Celiac, my blood never confirmed celiac, but I had villous atrophy and carried the gene. After numerous appointments and no answers my Husband and I filled out forms sharing my story. Our hope would be that I’d get an opportunity to go to the Mayo Clinic to meet with specialists. It was during the time I received the biopsy results I finally heard back from the Mayo Clinic that they had reviewed my file. It felt at this point like I was getting closer to a firm diagnosis. I was able to get an appointment for a consult at the Mayo in Rochester, Minnesota, and waited to go gluten-free until I knew all testing was complete.
My mom, aunt, and I made the trip to the Mayo Clinic in June 2022 for my first appointment where I met with multiple doctors and did multiple tests. We wanted to confirm this was truly my diagnosis with no other markers other than a biopsy. They soon confirmed they hoped that if I went gluten-free many of my symptoms would go away. I left the clinic and headed back to Minneapolis for my last gluten-filled meal!
The last Gluten Indulge:
Being the pasta lover I am I called my family to tell them the news and we went to Bacio Italian Restaurant on June 28th, 2022. Highly recommend it if you’re ever in Minneapolis, MN, and are able to eat gluten! Indulging in everything gluten that night from homemade fettuccine, ravioli, pizza, warm bread, & dessert. Knowing I would never be able to eat gluten again, I ate as much as I could that night to the point I felt like the button on my jeans was going to pop!
The Road to Feeling Better:
Having a friend who recently went through a diagnosis I leaned on them to figure out where to start. It was overwhelming at first, I met with a nutritionist at Mayo Clinic who was extremely helpful, but also spent a ton of time doing research on my own.
It was hard at first and I still have good and bad days. At the start, I was in denial that this was going to have to be my new normal. Thinking to myself am I sure that I have celiac? Am I sure they didn’t misdiagnosis?
Our families’ love for food we know needed to continue, but in a different way! Every weekend we would go out to dinner as a whole family and knew that was going to have to change. My husband and I enjoy being in the kitchen and often entertain family and friends. Trying to look at the positives we knew that our love for cooking and baking would be to our advantage. We would eventually get used to the new norm and be able to try new recipes, which we LOVE!
Soon after my diagnosis my mother and grandpa were diagnosed with Celiac and we have been on this journey together. I have now been Gluten Free since June 29th, 2022, and am feeling more comfortable in my new lifestyle. Many of the symptoms that once presented themselves are now gone or better.