The Healthy Celiac Podcast

Rude Things People Say About Celiac Disease (and How to Respond) Ep. 225

• Belinda Whelan • Episode 225

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Living with celiac disease means you’ve probably heard some frustrating, rude, or downright ignorant comments. In this episode, I share the most common things people say – from “Can’t you just have a little bit?” to “At least it won’t kill you” – and give you practical responses you can use in the moment.

We’ll also chat about why people say these things, how to know when to educate versus when to walk away, and how to feel empowered in your celiac journey.

Whether you’ve just been diagnosed or have been gluten free for years, this episode will give you the confidence to stand up for yourself and help others better understand the seriousness of celiac disease.

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Speaker 1:

So if you've been living with celiac disease for a little while now, you may have come across some pretty rude or ignorant comments or statements, and I wanted to address those on today's episode to give you some responses that you can say back to these people and talk a little bit about why people feel the need to say these things to us. Okay, so some of the things that people say to us are, you know, they're well-meaning, they're not meaning to be nasty, but some of them are just flat out rude, nasty and vindictive. So we're going to talk about some of the most common things that people might say to you so that you've got a bit of a response ready to go if people say these things to you or perhaps you've had them said to you in the past and you wished you had a comeback, but you felt so upset or annoyed or peed off that you just kind of kept it to yourself. So if it happens again, then you have kind of a comeback or a way to kind of shut them down or educate them on why it's not okay to say these things to you. All right, so the first one is can't you just have a little bit no, no, so, no, we cannot have just a little bit. And you can follow that up by saying that's not how an autoimmune disease works and you could leave it at that and that is enough to shut them down. But if they keep going, then you may need to educate further. Some people might not realize how serious it is. So this could be the way of opening that door and having that conversation and educating that person further on what celiac disease is. Obviously, pick and choose your battles Some people. It's not even worth wasting your time with Other people. If they are in your lives and you will see this person regularly, I would 100%, absolutely take this opportunity to explain what an autoimmune disease is and what it does to your body. If you do get you know, if you do have a little bit of gluten, so that they know and so that they understand that that is exactly why you are taking your diagnosis very, very seriously.

Speaker 1:

And the next one's kind of a throwaway statement that kind of diminishes what celiac disease is, and it could be something along the lines of oh yeah, my work colleague or my cousin eats gluten-free, but you know, she just does it to lose weight. This is completely different. All right, this is nothing to do with celiac disease. So it's basically going oh yeah, I know someone that eats gluten-free, that's all it is. So when someone says something like that, it could just simply be that they're trying to participate in the conversation with you because you know you've mentioned something about gluten-free and they know someone that eats gluten-free. But they don't understand the difference between what that person's doing and what you're doing. So you could just simply tell them well, what I'm doing is not a fad diet, they're just doing it because they think it's a fad diet. Or you know a simple way to lose weight. Again, you could leave it at that. It depends on the person. So leave it at that. If that's enough to say you know your piece, or, like in the previous one, continue and educate that person and let them know more about celiac disease. That person, and let them know more about celiac disease, you'll get a bit of a feel for the type of people who are open and want to learn more and sort of know how they can help you. So these are the times that you can educate people and you can, you know, feel more empowered to stand up for yourself and for your needs Because, like I said, a lot of the time people don't actually understand what an autoimmune disease is, because so many people eat gluten-free for so many different reasons and many times they don't take it seriously and they don't see the severity of the symptoms that many of us deal with if we accidentally consume gluten.

Speaker 1:

The next one I have heard so many times, and it is well, at least it won't kill you, or well, at least you're not dying, ugh. So I think what this is is people look at, say something like a peanut allergy, a peanut allergy can kill someone. Okay, a peanut allergy can kill that person. If they don't have their EpiPen, if they don't have access to that EpiPen or access to a hospital, they can in fact die. And I think this is where a lot of people go okay, well, if you eat gluten, what? You might get some diarrhea and you might feel a little bit rubbish for a bit. That's their thinking.

Speaker 1:

Okay, but the thing is, if you do continue to eat gluten, yes, you can die. It can cause so many other issues, including cancer. So you can tell them well, actually, no, that's not true. If I continue to eat gluten, it could in fact kill me, because it could cause cancer, because that is linked to people that continue to eat gluten when they have a celiac disease diagnosis. So you can put them in their place. You can let them know that it is very serious and that it is not just you know something to take on willy nilly and eat gluten-free whenever it suits. You need to be very, very serious about this because it's not, it's not just now and how you feel now, it's your future health that is so, so important.

Speaker 1:

All right, and then the last one is oh well, at least all you have to do is eat gluten-free. If only it was that easy. If only it was as simple as just eating gluten-free. So again, this will depend on the person. So, yes, it is very simple for some people to just eat gluten-free.

Speaker 1:

For others it's really tricky. It depends on their living situation. You know, you might live in a household with a whole heap of other people. You may live at home still with your parents, and they're not willing to adjust their cooking to cater for you. You may work in a work environment where it just doesn't suit living with celiac disease. So you may have to change your careers. It is so hard to put a blanket statement on that that you just need to go gluten free. I'm not even joking. I know so many people that have had to change their career path because of their celiac disease diagnosis. People that have worked in the hospitality industry, that have gone from being bakers and had to change to something else because they could no longer be around the flour. I know people that have taken years to heal their body, whereas others feel better immediately as soon as they go gluten-free. So it's not as simple as just going gluten-free for some people. For many people, they struggle with the mindset, they struggle with depression, they struggle with other autoimmune diseases, they struggle with the reaction from the people around them, whether they have unsupportive family or friends or work colleagues.

Speaker 1:

We are all on a very, very different path and I never, ever want to undermine anyone's journey. I recently had a lady on Facebook blast me because I called living with celiac disease a journey and she cracked it that I was building it up, that it's, you know, it's worse than it is and it's not. It's not that hard and it was really awful because I don't look at I don't look at my journey, which it is. It is a journey, a hundred percent for many of us. I don't look at my journey as being the same as my mom's. My mom's had a very different journey to me. I don't look at my journey as the same as my brother's. I don't look at what I face as the same as any of my clients, any of my students or any of my listeners, because we all live completely different lives. We have such different things to face. We go to different restaurants to each other, we go to different workplaces, we have different partners, we have different children, we have different guidelines in our kitchen. So we are all very, very different, but we are all in it together and we all face very similar problems and all face scrutiny.

Speaker 1:

But this is where you can empower yourself and you can stand up to people that are either nasty, gnarky or just flat out rude. And if they don't understand, please know that sometimes it does come from a place of wanting to learn more. It's not always that nastiness, and some people simply confuse trends with allergies and also to autoimmune diseases. So not many people really understand the difference between an allergy and an autoimmune disease. So not many people really understand the difference between an allergy and an autoimmune disease. Many people with celiac disease actually do refer to themselves as I'm allergic to gluten, and the reason for that is not that they're ignorant, it's not that they don't understand, it's just sometimes easier to tell other people hey, I'm allergic to gluten because people get what an allergy is. They know that if you have an allergy to something, you can't have that, whereas if you go, I've got an autoimmune disease. What does that actually mean to a lot of people? I mean, it meant nothing to me. Before I had my celiac diagnosis. I had absolutely no clue what an autoimmune disease was. So again, it's not about being ignorant, it's just about people just don't understand and don't know.

Speaker 1:

And then others simply project their discomfort or their feelings about food onto you. Okay, one example going way back to before my brother got diagnosed and I told him over and over he had to go get tested. He's crazy. He's going to feel so much better. He would say to me I can't do it. I've had to give up beer. I'm not giving up food as well. I could not live without this, that and the other. And he would always be like I, just, I just don't, I can't do it. So he was always very funny about my food and just, I couldn't eat that and he would make really weird comments, like it's just food, like it's just, it's just part of life and, honestly, you will feel so much better if you eat the same way too. So he was just, he was very fearful. So, again, some people just don't understand the same way too. So he was just, he was very fearful. So, again, some people just don't understand the benefits of it and they can make it about them. So you, you know, you might hear comments like oh God, I'd die if I had to eat gluten free. So they're not thinking about you, they're thinking about themselves, they're putting themselves in that situation and you know better because you know that you feel so much better eating gluten-free. So it's a real, it's just again, it's just one of those ignorant conversations. And then, lastly, people just don't know how serious it is. So until you educate them, they don't understand how serious it is.

Speaker 1:

I see time and time again online, I go to lots of chat groups and forums and I see time and time again so many people that get diagnosed with celiac disease. They let their parents know and their parents are nasty to them, absolutely nasty. They undermine them, they make it out like you know, it's a joke that they've always eaten this way and all of a sudden, you can't eat gluten. I always look at those people and think how much education have they got? How much do they actually understand about gluten, about celiac disease, for them to make that blanket statement? For me, personally, I think that those people they need to stand up for themselves and they need to educate. I do understand there are plenty of people that never they need to stand up for themselves and they need to educate. I do understand there are plenty of people that never, ever, want to hear it. They are awful. There are some awful people out there and they are so stubborn and so set in their ways that they don't actually want to hear from their own children about this. So I'm not undermining that at all, but if that was the reaction from one of my parents, I would be mortified and I would be doing my absolute best to educate them to share information, whether it was from, you know, websites such as Celiac Australia here in Australia, or, you know, giving them some handouts, giving them some books or literature to read, because sometimes just coming from you is not powerful enough. It needs to come from a medical source or a professional source, so it's really interesting how some people react in that manner. So please know you are not alone.

Speaker 1:

This is something that many of us face. It does get easier. I say this over and over. I say this about so many things, whether it's dealing with other people, whether it's eating out, whether it's shopping. It does get easier, I promise you.

Speaker 1:

It was hard in the early days for me as well. I was there right in the thick of it. I struggled. I remember crying after coming back from the shops. I remember feeling like rubbish when a waitress threw my gluten bread across the Blumen pub after it was served on top of my meal. I've had so many awful situations, but it does get easier and you do come out the other side so much healthier, so much happier and so much stronger, and I hope that this episode has inspired you to stand up for yourself, to educate others and to feel empowered in your celiac disease diagnosis, because it is real and you have every right to be safe and to be protected.

Speaker 1:

So thank you so so much for listening. Please comment below on this episode. If you're watching on YouTube, I'd love to hear from you if any of this resonated or if any of this is kind of hitting home for you, or if you are listening on the podcast, please, please, send me a message over at the Healthy Celiac on Instagram. It's been very quiet lately from people from the podcast, so I would love to hear from you because, yeah, it just helps keep me going and knowing that I'm making a difference and helping people. So thank you for listening and I look forward to talking with you again next week on the show. So have a great week and I will talk to you then. Take care Bye.

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Belinda Whelan

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