May is Celiac Disease Awareness Month, and this year I wanted to do something special to help spread awareness about a cause so close to my heart. So, I decided to reach out to some people I have met through Instagram to learn a little bit more about their stories and experiences with Celiac disease. Reading other peoples’ stories was so eye-opening for me, and truly made me feel less alone in some of the struggles I face in living gluten-free. I decided to start sharing parts of these stories on my Instagram to help highlight the unique experiences of those with Celiac disease, and thus Project Celiac Stronger was born.
I was filled with gratitude when I received an abundance of stories from so many different people, and I wanted to ensure each story was heard. Today I am sharing snippets of all of these stories with you. I hope you can read these stories and know that you are not alone in your gluten-free lifestyle.
Note: Each participant sent me responses to prompted questions about their GF lifestyle. I have compiled those answers into the below stories. In addition, each participant’s Instagram account has been linked with their name.
Kate, @fabulouslygfree, was diagnosed with Celiac Disease at the beginning of 2017. I think the above quote by Kate truly embodies one of the biggest struggles of Celiac Disease and other autoimmune conditions – even though you can’t always see them, they are always there. Kate explained that one of the other hardest things about living gluten-free is the uncertainty that comes with reading food labels and eating out at restaurants. However, she also recognized the immense sense of support and community she feels from her Instagram account, where she loves to post her finds and creations with her followers. One of Kate’s favorite moments associated with Celiac Disease was when she had the opportunity to present her tips for transitioning to a GF lifestyle at a food allergy expo in Richmond Virginia.
Hannah, @celiacfoodlover, was diagnosed with Celiac Disease in 2015, the summer after her freshman year in college. When she visited her doctor for stomach pain and an ulcer, he ran a Celiac blood test, which showed elevated levels of antibodies. Hannah explained that one of the hardest things about being GF is professional aspect, such as having to turn down food being offered to her during an evaluation or interview. However, she also shared that one of her favorite parts about have Celiac is when she finds a new bakery or restaurant unexpectedly, which happened once when she was driving back to college with her dad. They stopped at the Cherbourg Bakery in Columbus, OH after finding it on Find Me Gluten Free app, and Hannah was able to buy lots of GF goodies. She also told me that having Celiac has “reminded me that we never know what someone is going through, whether they have an invisible illness or another type of life challenge.” Hannah’s perspective on her gluten-free lifestyle is so inspiring and I especially love this quote – you truly might never understand the battles others are facing.
Taylor, @lettucebeglutenfree , went gluten-free in 2015, her sophomore year of college, after discovering that her brain fog, headaches, acid-reflux issues, and nausea were the result of a gluten-intolerance. When she first transitioned to a GF diet, Taylor struggling with knowing what she could eat, but as time passed and she learned more, she found that being GF allowed her to make healthier choices and listen to her body. She, like all of us in this community, has learned the importance of reading every nutrition label and ingredient, but now feels like she can properly fuel her body. My favorite thing Taylor shared was that the best part of being GF for her is the community on social media. She said that “Before I created my Instagram I felt alone in a lot of situations because no one really understood what I was talking about or the struggle that being gluten-free can sometimes be.” Feeling alone after beginning a gluten-free diet is something that I can also relate to, but just like Taylor, I now feel thoroughly supported by the online GF community!
Casey, @collegeceliackc, was diagnosed with Celiac disease during her senior year of high school, after some random weight loss, acid reflux and stomach problems prompted her doctor to run the test. However, Casey’s body didn’t immediately respond to a GF diet, and she was then hospitalized at age 18 for malnutrition and vitamin deficiencies. This was a scary time for her, but now that she has healed and she’s healthy, she has learned just how strong her body truly is. Casey acknowledged that being in college with Celiac disease is ultimately very challenging, but that now she has learned how to plan events that don’t revolve around food, and is also more comfortable bringing her own food or being the one to choose a restaurant. In addition, Casey shared that being gluten-free has allowed her to become more creative in the kitchen and try tons of new foods. Recently, she even made gluten-free cinnamon rolls with her mom for the very first time. Experimenting in the kitchen and discovering restaurants and products that she loves helps Casey have a very positive outlook on her gluten-free lifestyle.
Molly, @mollys.gf.plate, was diagnosed with Celiac Disease in 2016, when she was only 19 years old. Having to change her entire lifestyle while still being in college was a huge challenge, however she did feel so much better after starting her gluten-free diet. She said that she “didn’t even realize how sick [she] felt until [she] was feeling so good!” Molly shared with me that while being gluten-free can be inconvenient when traveling due to the need to plan ahead, it has also given her perspective about what she puts in her body. Having to read ingredients and nutrition labels has allowed her to make healthier and more wholesome food choices. My favorite part about Molly’s story is that she shared how being gluten-free can be fun sometimes. In her words, “I love to research where I can get all my favorite foods, and how I can make my favorite recipes from growing up, gluten free!” I personally feel the same way, and love her positive outlook on Celiac disease!
Katherine, @officiallysimplyfree, was diagnosed with Celiac disease during her junior year of high school, after having to quit her lifelong passion, dancing, due to intense fatigue and joint pain. However, she accepted her diagnosis as a challenge, and Katherine and her mother dove into cook books and recipes to try to navigate this new diet. While being gluten-free helped her heal, Katherine eventually had to cut out dairy, grains, corn, soy and peanuts from her diet to completely eliminate her stomach pain, fatigue and inflammation. She is now happy and healthy and able to sing, dance and act, and has developed a love for cooking since discovering her dietary restrictions. I am so inspired by Katherine’s outlook on not only Celiac disease, but on life in general!
Meg, @bostonglutenfree, was diagnosed with Celiac disease at the end of her senior year of high school, and had to leave for college only four months after starting her gluten-free diet. While she is so grateful for friends that accommodate her needs, Meg knows that one of the hardest parts about being gluten-free is not being able to go to impromptu dinners at back alley restaurants with friends. This lack of spontaneity that comes with Celiac is a struggle that a lot of people definitely understand. However, Meg is incredibly grateful for the support of both the gluten-free Instagram community, where she has met some of her best friends, as well as the support of her family. She shared with me that the first Thanksgiving after she went gluten-free, her mom made a LOT of stuffing to try and perfect the GF recipe while also making Meg a homemade GF pie. I also loved that Meg shared with me that “having celiac has taught [her] to always be prepared and to adapt to whatever life throws at [her].” Being gluten-free definitely makes us stronger!
Lindsay, @glutenfreehappyhour, was diagnosed with Celiac disease during her sophomore year of college, in 2011. Like many of the others who shared their stories, she struggled with adjusting to this new diet while being in college, away from her family. In addition, like many of us, Lindsay faces difficulties when eating out at restaurants, especially with ensuring that the staff understand the severity of her restriction. However, her Celiac diagnosis has allowed her passion for food to grow, and she loves to bake, cook, find new restaurants, try new products, and discover new places. Since she was diagnosed nine years ago, Lindsay has watched the number of available GF products increase tremendously, and she loves to support new small GF businesses. My favorite thing that she told me was that she “learned that gluten free food TASTES GOOD.” I love Lindsay’s story and I absolutely adore her consistently positive and hopeful perspective on Celiac disease!
Nat, @woot.nat, was diagnosed with Celiac Disease in her junior year of high school after going gluten-free the previous year. Having to go GF as a teenager was, as many of us can understand, difficult for her because so many events as a young adult revolve around food and drink. However, dealing with this at a younger age also taught Nat to be more understanding to both herself and to others about their own health needs. In addition, Nat now has happy memories from being GF, like when she was in Iceland and was served a three-course Celiac-safe and delicious meal after the server recognized the severity of Celiac! Nat also shared with me that for her, “The best thing about being GF is that [she] get[s] to try new things all the time.” I love this quote because it is so true – when you begin a gluten-free diet you have to stop eating a lot of things, but you also get to try so many new delicious foods and products!
Rae, @raeebaee20, was diagnosed with Celiac disease during her sophomore year of high school, in 2014. While she struggles with feeling left out because of her diet at social events, she loves being able to connect with others who deal with the same issues. In addition, Rae shared with me that one of her most positive memories associated with her diet was when she made gluten-free pancakes and brownies for her friends and they actually preferred them over the regular ones! Rae’s friends and family always reassure her that her dietary needs are not a burden, but like many of us, it is hard to not feel this way. However, she is still so grateful for their support and kindness, especially when she discovers a new food or bakery that she wants to try!
Sarah, @cakeandkaleforbreakfast, went gluten-free in 2018 after suffering through extreme fatigue and digestive distress during her sophomore year of college. Now that she is gluten-free though, she has been able to heal from the previous damage and eat and exercise normally again. One things Sarah shared with me really resonated: “Though many of my friends and family care and are interested, a lot of them will never be able to understand the fear and pain associated with consuming even a tiny amount of gluten.” This fear can sometimes be hard to understand, and yet it is something we all experience. However, Sarah also shared with me an amazing story about how hard her mom worked to learn about GF flours to accommodate her diet. Last Christmas, her mom even cooked GF cinnamon rolls and made most of their dinner GF. Despite how real the fear and pain can be, Sarah’s story shows how the support of family and friends can truly help make this whole GF thing a little bit easier.
Marina, @_mai_faith_, was diagnosed with Celiac disease in July of 2018, and has struggled since then with her friends understanding her needs and the severity of her condition. However, on her 16th birthday, Marina was able to enjoy a delicious GF cake, which was so special because of her love of all things sweet! She also feels so much better since going gluten-free now that her body has healed. Marina has learned that you can never take anything for granted and must cherish what you have because you never know when it might change.
Melissa, @onehappystomach, was diagnosed with Celiac Disease in October of 2009, and has struggled, like many of us, with feeling like a “burden” due to her gluten-free diet. In her response to me, she said “At the time I was diagnosed, I was surrounded by people who either didn’t take it seriously, called it a fad, or said things like, “come on — one bite won’t kill you.” These types of responses can be incredibly frustrating for people with Celiac disease, and truly show the need for more awareness about the disease. For her, one of the hardest parts about living with Celiac is losing a sense of spontaneity when going out to eat, as well as the monetary expense that comes with purchasing GF food. However, since being gluten-free Melissa has felt so much better physically and mentally, and truly understands the impact of gut health on your whole body. She also loves being part of the online GF community, as well as enjoys developing new recipes and dishes and experimenting with new foods. Melissa said she now is constantly thinking of new dishes to make with gluten-free products!
Thank you so much for taking the time to read these stories, and thank you to everyone who was willing to share this part of their life with me. I have truly learned so much since starting this small project, and I hope it can make others feel less alone in their Celiac/gluten-free journeys.
All graphics featured in this post are on my Instagram, @celiactivist, and if you relate to them, feel free to share!
