To the People Who Are "Sorry" That I Have Celiac Disease

When I tell people that I have celiac disease and need to eat a gluten free diet, I can usually expect a couple of reactions:

1. So you're one of those people who actually need to eat gluten free? (A big yes). 
2. What is celiac disease? Can you tell me more? (Happily...)
3. I would die without gluten! I'm so sorry! 

To the People Who Are "Sorry" That I Have Celiac Disease

It's people with the third reaction, in particular, who I'm talking to today. Keep in mind that this post is not an angry rant against that reaction or the people who have it. However, this is what I wish I'd remember to say instead of the usual, "It's OK!" or "It's actually not that bad." Even more importantly, this is what I want those people - and everyone else - to know about living with celiac disease:

First of all, I'm sorry too. 

Or at least, I was, when I was first diagnosed. When celiac disease entered my life, I was a senior in high school. My biggest worries should've been what dress I'd wear to the prom (a gorgeous white one, it turns out) or what college I'd call home the following fall (with Point Loma Nazarene University winning in the end). 

Instead, I had to worry about what "gluten" even was and how to explain to my friends that I suddenly couldn't eat the pasta and bread they'd seen me enjoy for years. I had to research "gluten free options at Olive Garden," since my doctor had called me the week of senior prom and our reservations were already made. Suddenly, I had to wonder if my dream college was as dreamy as I thought now that I needed special cafeteria accommodations.

To the People Who Are "Sorry" That I Have Celiac Disease

So, yes, I am sorry for the girl who's last bit of childhood was unexpectedly complicated. I'm sorry for the first date that ended with me being glutened and for the freshman year of college that included being hospitalized for celiac complications. 

What I'm not sorry for? Actually having celiac disease and needing to follow a gluten free diet. 

However, I'm not sorry...

...that being forced to go gluten free helped me manage my fibromyalgia pain for the first time in my life. I go more in detail here, but going gluten free has drastically decreased my fibromyalgia pain. My mom has found similar relief - and I doubt either of us would've been motivated enough to make the switch without my celiac diagnosis. 

To the People Who Are "Sorry" That I Have Celiac Disease

...for the disease that triggered the creation of this blog. I started writing for me and for all the other college freshmen with celiac disease who felt scared out of their minds. I still write for me - but this blog is also my way of connecting with and empowering others in the gluten free community. It's my way of showing that living with celiac disease can be fun and delicious and even normal - and I will always be grateful for the diagnosis that urged my fingers to the keyboard.


...that cutting out gluten actually caused me to eat an even more diverse diet. Would you believe that, pre-celiac, I had never even tried avocados, pomegranates, cashew butter and too many other foods to list? When gluten went away, I needed some other foods to fill the gap. Luckily, there are still plenty of foods that have zero gluten and tons of delicious flavor!

...for the amazing people I've met through my diagnosis, from the doctors who treated me to the gluten free bloggers I've met online to fellow food allergy and celiac warriors I've run into at grocery stores or in my college cafeteria.

To the People Who Are "Sorry" That I Have Celiac Disease

...that my celiac disease diagnosis forced me pay more attention to what I actually eat. When celiac entered the picture, my diet wasn't the only one that changed; my family's diet shifted as well. We no longer eat red meat at home, and my parents have actually learned to love eating fish at home. Not to say that celiac disease has made me (or my parents) health gurus or 100% nutritious eaters...but a health crisis related to food definitely makes you think more about what you're putting in your mouth!

...for the strength, determination and self-awareness that celiac disease has helped give me. Like that infamous meme says, "Autoimmune disease: because the only thing tough enough to kick my ass is me." 

What To Say Instead...

Would my life be easier if celiac never joined the picture? Of course. But do I regret my journey with chronic illness? Most days...no


To the People Who Are "Sorry" That I Have Celiac Disease

So the next time someone tells you that they have a chronic illness - whether it's celiac disease, fibromyalgia or something else - consider different comments to make instead of how sorry you are to hear that. 

For instance, why not say instead: "I'm sure that can be difficult sometimes. How can I help?" 




What reactions do you usually get when you reveal your dietary limitations or chronic illness? What are you not sorry about regarding your chronic illness? 

Comments

  1. This is a very interesting post. It was great learning more about you.

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  2. I have Crohn's Disease, and yes, people can be insensitive about it. I'm glad that you've found silver linings to Celiac Disease!

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    1. Sending lots of health and happiness your way! <3

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  3. a great read - chronic illness are always the toughest for my patients since they (and you) have to live it day to day. I'm glad your fibromyalgia improved though!

    PS. I first heard about celiac disease when I was at Stanford University - they are extremely good about diets and actually have a peanut free dorm/cafeteria for those nut allergies and label their food as GF too :)

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    Replies
    1. That's awesome to hear about Stanford University! Thanks for the kind words <3

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  4. Well written post. A pity so many people lack Empathy and aren’t more careful with the words that come out their mouth. You’re a strong woman & I wish you all the best in your endeavors.

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  5. I think what people miss is how much better you feel when you stop eating gluten. And, I'm not just talking people with celiac. I have acid reflux (it has done minor damage to my esophagus) and cutting out gluten has greatly increased my quality of life. I lost weight without trying, have more energy (not always I still battle with sleep apnea and insomnia so 🤷‍♀️), and just feel better about myself. I don't find myself gorging myself on sugar filled junk food as often and if I do it's moderately and specifically gluten free ones that tend to also be healthier. So, I agree with the sentiment that I'm sorry you have to deal with a life changing disease, I'm not sorry you can't eat gluten because I'm not sorry I don't either!! Hugs ❤️ Great post!

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    1. I'm so glad that you have found a diet that makes you feel so much better! Not eating gluten is really such a blessing when it leads to a healthier, happier life <3

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  6. Excellent post and great attitude! Thank you for sharing.

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