When It’s Healthy For Me to Be “Rude” Because of My Celiac Disease

I was asked on my very first date only a few weeks after I received my celiac disease diagnosis. At that point, I knew I had to eat a gluten free diet, but I didn’t really know much about cross contamination or how to advocate for my health. So when my date suggested going out for ice cream after the movie, I said yes.

When It’s Healthy For Me to Be “Rude” Because of My Celiac Disease

And when the ice cream scooper asked if I knew what I wanted - after I spent several minutes desperately Googling “gluten free Baskin Robbins” on my phone and scanning the results, I said yes - even though I really wasn’t. After all, people were waiting. My date was waiting. It would be rude to hold up the line to keep researching, not to mention to spend time interrogating the employee about what celiac safe options they had. 

So I was a “nice person” and ordered something quickly...and soon experienced my first symptoms of being “glutened.”

Over five years have passed since that day, and based on the experience and confidence I have now, I would act very differently if I was put in the same situation. You see, I’ve come to learn that my health should always be my number one priority...and sometimes being healthy with celiac disease requires being a lil' "rude" from time to time.

When It’s Healthy For Me to Be “Rude” Because of My Celiac Disease

Like when I “hold up” the long line of customers or my busy table of friends at a restaurant because I need to talk to the manager about their gluten free protocol. 

Like when I turn down social invitations because I need time to meal prep my own gluten free food for grad school or just don’t feel like being surrounded by a bunch of delicious food I can’t eat while constantly being asked, “Why aren’t you eating?” 

Like when I bring my own food to a restaurant that doesn’t have celiac-safe gluten free options. 

Like when I turn down “gluten free food” that a friend made “just for me” because it was likely cross-contaminated.

When It’s Healthy For Me to Be “Rude” Because of My Celiac Disease


Like when I meet my significant other's parents for the first time and can’t partake in his mom’s famous chicken dinner or cherry pie. 

Like when I give away gluten free food that people have gifted me because I don’t automatically LOVE every kind of gluten free food. 

Like when I don’t feel like explaining my celiac disease, gluten free diet and other dietary restrictions (low fodmap, mostly dairy free and egg free), so I just give someone a basic spiel and tell them to let me know if they have any more specific questions.

When It’s Healthy For Me to Be “Rude” Because of My Celiac Disease

Sure, none of these “rude” acts may sound like the end of the world. However, when you have been raised to always treat others like you want to be treated, have grown up with the reputation of being a “nice girl," and have a natural urge to please others and avoid causing a scene, advocating for your health in a way that might be construed as “rude” can be dang uncomfortable and hard.

If I’ve learned anything in my five years of living with celiac disease, though, it’s that we shouldn’t have to apologize for our celiac disease...or for the accommodations we need to stay healthy with celiac disease! At the same time, though, I don't expect or feel entitled to accommodations wherever I go. Instead, I try to make sure my needs are met in ways that don’t inconvenience others, like by bringing my own food to social events and researching restaurants ahead of time so I already know what I can and can’t eat. And if people do offer to tweak their plans to lend me hand...all the better!

When It’s Healthy For Me to Be “Rude” Because of My Celiac Disease

Because here's the bottom line: at the end of the day, I know that the people who truly matter to me - my family, my friends, the young men I’ve been lucky enough to be in relationships with - understand that when I interrogate the waiter about gluten free protocol or constantly decline dinner invitations, I'm not trying to be rude. I'm just doing what I need to do to survive and thrive with celiac disease.

So the next time you are put in a situation where you feel uncomfortable or unsafe, I want you to remember this:

It’s not rude to advocate for yourself, even if it inconveniences others or isn't the "nice" or "polite" thing to do. 

It’s better to appear rude than do something that may or may not cause you to be glutened and hurt your long-term health.

When It’s Healthy For Me to Be “Rude” Because of My Celiac Disease

And the people who really matter won’t care when you ask for your meal to be remade because it appears cross-contaminated or when you turn down the flourless cake Aunt So-and-So spent hours toiling over because you’re not sure it’s safe.

Because you being healthy and happy in the long run is sooooo worth a few awkward conversations and moments among the years.




What’s one “rude” thing you do that’s actually a healthy way of coping with celiac disease or another chronic illness? Tell me in the comments! 


Comments

  1. I love these warm weather pictures, but I shudder at the temperatures you are enduring this winter!! Love you my girl.

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  2. I'll be honest, I've been having difficulty with one of the events organized locally for people with Celiac Disease. I was horrendously glutened by something a vendor was selling there. And when I complained to the organizer that the gluten labeling was, first of all lacking, and second, on their website, it was showing that they don't understand... she basically shrugged.

    Later, when I talked about it in a Facebook group for local Celiacs, she claimed that she felt perfectly fine with feeding any food in the events to her daughter. Her daughter even came there to stick up for her. I had talked about it because she had invited a local restaurant that is likely to have cross contamination and not be Celiac safe. It was a pretty ugly situation. So I was probably preceived as "rude" but I can't risk my health for it.

    I"m disappointed that the "old guard" in my area (North Carolina), those who have been Celiac for decades before the current trend... they seem to be perfectly fine with CC potential in restaurants.

    One support group even went to a pizzeria that offers both GF and not GF pizza. That's notorious for CC partly because flour stays in the air for a debated amount of time, probably 24 hours. The owner of that pizza shop also got into the facebook argument and claimed basically that the risk to Celiacs was just tough luck because he couldn't afford to train people and restaurants aren't regulated.

    The entire event made me sick to my soul. I think that Celiac.com (as opposed to Celiac.org) has shown us that not everyone in the Celiac community is our friend. And locally I've experienced that and I'm not mad about it as much as I'm utterly heartbroken.

    I think it may be a "long time" Celiac vs a newly diagnosed Celiac issue. If you were diagnosed after 2014 (the publishing of the FDA final rule on gluten free labeling), then you're less likely to feel the need to compromise all the time. And I respect that people who've been Celiac a long time did have to struggle a lot more than I have to, to provide healthy food for themselves. But I think the time is now for more respectful assertiveness about Celiac safe food.

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  3. I just totally get it! You have just described what MY life looks like... When it comes to family and friends it's totally fine. But at work I feel very bad with my job colleagues. I don't feel like going out with them after job as they go out just to EAT (as there weren't any more interesting things to do) and all I can order is a tea or wine (depending on the place). They don't get it, try to persuade me to eat something ( "this salad can't have gluten, just eat it!") or even make little fun of me ("Look what Karolina ordered - only a tea!"). Despite my constant explanation that I can't it even a little bit of gluten and stories about my contamination they don't get it. So I started to refuse to go anywhere, I refused to go on a trip with them to another town as I knew I won't get anything to eat there. I have no problem to take food with me going on a vacation with people who understand it but I just feel very bad when I have to hear nasty words. It's not like I've chosen what I'm suffering from.. .Any ideas how to cope with job situation like that? Someday it'll be my duty to go somewhere and what I'll do then? I'll just suffer from hunger and incomprehension...

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  4. This really hit home. This is why I rarely eat anywhere away from home. I have found that having celiac disease is somewhat isolating, especially as I had been vegan for many years before my diagnosis. Now I'm really SOL, but at least there are kindred spirits here and there online (thank you, Casey).

    At restaurants, it can seem like just too much trouble to go through the entire routine -- when, as Casey says, other people are waiting.

    At a friend's house, I appreciate their efforts to feed me, and feel that I shouldn't refuse to eat, but I worry about it.

    If only it were "socially acceptable" not to join others in eating, or to bring one's own food everywhere!

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  5. I think the "rudest" thing I have ever done to protect myself from being glutened is by refusing to kiss someone who had been drinking beer all night. He was very offended and did not understand that I could get glutenend through saliva.

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