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5 Lessons from 5 Years of Celiac Disease

Writer's picture: Kate Driscoll, PT DPT CSCSKate Driscoll, PT DPT CSCS


I've had diagnosed celiac disease for five years. I've learned five major lessons that I feel carry over well into everyday life. They are lessons that benefit not only celiac disease but anyone trying to better their health.


𝗟𝗲𝘀𝘀𝗼𝗻 #𝟭: Pay attention to your body.

Don’t ignore signs that your body is not functioning at its top level. ⁣ ⁣ I had zero idea I had celiac disease. I only was tested because my older sister had been diagnosed the year before and my PCP just wanted to rule it out. ⁣ Looking back, I had SO MANY symptoms: GI discomfort, joint pain, headaches, fatigue (I used to struggle to stay awake after eating lunch), depression/irritability, skin issues, brain fog. I would be hungover for three days if I drank beer.⁣ ⁣These should have been massive red flags, but I never put them together. I wasn’t paying attention. I ignored all my issues. Never mentioned anything to anyone. I should have been telling these symptoms to someone, but I didn't. Don't be me. Pay attention to your body, tell your PCP about any symptoms you have. And if you don't have a PCP, get one. Get your yearly physical.


𝗟𝗲𝘀𝘀𝗼𝗻 #𝟮: Change takes time. ⁣ ⁣

I didn’t feel better immediately but eventually I felt better. It takes time for your body to respond to changes. Be patient with it. ⁣ ⁣ It also took time to get used to having celiac disease. Not being able to go anywhere for a meal, eat/drink anything I wanted, not have to worry about ingredients. But it has become normal. Changes you make to improve your health won't be automatic choices at first. You need to get used to making thosse choices.


𝗟𝗲𝘀𝘀𝗼𝗻 #𝟯: Learn whats in your food. ⁣ ⁣

Gluten is hidden in a ton of things. I’m still learning new things that have gluten in them. Like some gums. I had to learn to really read food labels and understand what things on them meant. I learned how unregulated certain statements on food are. For example, something can claim gluten-free but be processed somewhere that also processes wheat. Unless it is certified gluten free, there's no certainty that it is safe.


𝗟𝗲𝘀𝘀𝗼𝗻 #𝟰: Speak up about your issues. Don’t let others' opinions affect your health.⁣ ⁣

I was always super uncomfortable (and TBH still struggle) with telling restaurants/places I was ordering food about my issues. Not speaking up has just led to me getting sick and my antibody levels remaining high. ⁣ ⁣If you are unable or unwilling to eat something, because you are trying to avoid it or you have to avoid it, don't be afraid to speak up. Your family and friends should support you trying to improve your health, and if they don't, you need to find a better support system. (The internet can be a wonderful place for this).


𝗟𝗲𝘀𝘀𝗼𝗻 #𝟱: Plan and prepare. ⁣ ⁣

Having dietary restrictions can make going out to restaurants or travelling rough. I went to Belarus for University Worlds and survived on quest bars and plain chicken for a week because no one there understood what celiac was. I had to learn how to plan way better. Road trips have pre-planned stops at restaurants because most rest areas don’t have great GF options. I also pretty much always have to be the planner when with friends.⁣ When you are trying to improve your eating habits or habits in general, you need to plan. If you are trying to workout more, you need to schedule that time into your week. You may need to plan your workout clothes and workout ahead of time. If you are trying to be better about eating more nutritious foods, you need to plan your meals, prepare a grocery list and schedule meal prep time. It's cliche but if you're not planning, you're not succeeding.


The challenges in our life make us learn. Celiac disease isn't always the easiest to navigate but it has made me prioritize my health and learn strategies that benefit me in other areas of my life.


💙Kate

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