How to Explain Celiac/Gluten Intolerance to People Who Mean Well but Still Don't Get It

Have you ever had someone try really hard to accommodate your celiac disease and somehow still completely miss the mark? Maybe they bought gluten-free bread but used the same knife that touched regular bread. Maybe they proudly served a "gluten-free" dish without realizing the soy sauce contained wheat. Or perhaps they looked genuinely confused when you explained that simply removing the croutons doesn't make a salad safe. These situations can be incredibly frustrating—not because people don't care, but often because they do care and simply don't understand the details that matter. 

In this episode, I'll share how I explain celiac disease to well-meaning friends, family members, and hosts in a way that helps them understand the most important risks without overwhelming them. By the end, you'll have a few simple, practical ways to talk about celiac disease without turning every conversation into a medical lecture. 

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Transcript

Disclaimer And The Common Frustration

Carrie Saunders 0:00

Quick reminder before we get started on this episode. This podcast is based on my personal experiences and isn't medical advice. Have you ever had someone try really hard to accommodate your celiac disease or gluten intolerance and somehow completely miss the mark? Maybe they bought gluten-free bread, but used the same knife from the regular that they use on the regular bread. Maybe they proudly told you they made something gluten-free, but didn't realize the soy sauce contained wheat. Or maybe they looked genuinely confused when you explained that simply removing the croutons doesn't solve the problem. These situations can be incredibly frustrating. Not because people don't care often, but it's because they do care. They just don't understand. So in this episode, I'm going to share how to explain a celiac disease and gluten intolerance to well-meaning people in a way that actually helps them understand the parts that matter most. And by the end, you'll have some simple ways to talk about celiac and gluten intolerance without turning every conversation into a medical lecture. Let's dive

Why People Miss The Point

Carrie Saunders 1:00

in. Welcome to the Gluten Free Engineer Podcast. I'm your host, Kiri Saunders. In 2011, I was diagnosed with celiac disease, a moment that changed everything. But I was determined not to let it hold me back. With my two engineering degrees, I set out to reverse engineer the gluten-free lifestyle, breaking down recipes, safety tips, travel hacks, and everything in between to rebuild a life I love. Whether you have celiac disease, gluten intolerance, or simply choose to live gluten-free, this podcast is for you. Join me each week as we simplify the gluten-free lifestyle, make it fun, and prove that you don't have to miss out on anything. Welcome back to the show. Today we're talking about how to explain celiac and gluten intolerance to people who mean well but still don't get it. So most people have never heard of villii. Most people don't understand autoimmune diseases. Most people don't understand cross-contamination. And most people think, or many people, not really most anymore, I feel like, think gluten-free is a preference. And honestly, why wouldn't they? Before diagnosis, many of us didn't really understand either or think about it before we knew that gluten causes issues. Most people aren't being careless, they're missing information. I had no idea what C Lac disease was. I never had heard of it before until we I was on the process of getting diagnosed. It was just something we didn't talk about, didn't hear about in my area, and about I think it was about 2011 when I got diagnosed. So many times people just simply aren't

Start With A Simple Script

Carrie Saunders 2:32

informed. So how do we explain this? First, we want to start with a simplest explanation. We want to avoid information overload. So instead of long medical explanations, autoimmune terminology, if you have celiac disease or scientific deep dives, we want to start simple at first. For example, my body attacks itself when I eat gluten. That's something you could say if you have celiac disease or gluten intolerance. Or you could say, for me, gluten isn't just uncomfortable, it causes an immune reaction, which is what you'd say, obviously, if you have celiac, but it's clear, simple, and memorable. So then what do we do next? As far as explaining why just a little doesn't work. This is one of the biggest, most un people think that a tiny amount equals tiny problem, but instead it is not that. I know when I was in my healing journey, a tiny amount was honestly worse than a large amount because it caused lingering issues in my body for many, many days. A larger amount when I was healing was much easier to deal with because I got rid of it really, really fast. If you know what I mean. It just I my system purged it really fast. But when it was a tiny amount, I

Why “Just A Little” Fails

Carrie Saunders 3:48

would have migraines for days, I would have stomach pain for days, it just lingered so much. So it's you can explain it in a way like it's not like calories where a little more or a little less doesn't really matter. It's more like a peanut allergy. The amount isn't the point, it's the exposure that is important. And then obviously, you know, a peanut allergy is not the same as celiac diseases, they're completely different systems, but most people understand a peanut allergy and that people with peanut allergies can't even have the tiniest, tiniest little bit or the tiniest little bit of oil, you know, a peanut oil transfer into their food. It's something they understand. So using that can really help them understand that a tiny amount can be a huge, huge issue. And then if you need to explain cross-contamination, this is where I find a lot of people struggle the most. I like to explain it by a knife touching bread, and then if it touches the bread, it gets little microcrumbs on it, or you can even sometimes see them. And then if you touch a piece of gluten-free bread, it gets transferred over to there. Um, same as like if you dip your knife into the peanut butter jar and you put it on a gluten bread, and then you dip it back in to the peanut butter jar to get more peanut butter. You've now just put some a little bit of gluten into that peanut butter jar. Another example of cross-contamination is a burger bun touching your grill. Um, we could also be leaving crumbs in other places like the butter dish, the jelly dish. Um, it could be crumbs on the counter. It could be flour in the air and landing into some gluten-free stuff. Um, some people I know when they're baking, they get flour everywhere. So it can be a really big issue. So it's not necessarily just what's in the food, it's also what touches the food. So I like to try to explain it. That's not just what's in the food, it's what touches the food, because then that transfers a little bit into that my food. And then there's some questions you may hear a lot. Can I just pick it off? Can't you just have a cheat day? A little bit won't hurt you, right? We had a family member say this to one of my kids once. So when people ask these questions, many times the best thing to do is just use a little bit of humor and answer each one briefly.

Cross-Contamination In Real Life

Carrie Saunders 6:10

That can just make it so much easier. So can't you just pick it off question? You could say, you know, no, this leaves little crumbs. I mean, you could even show them if you pick off croutons off a salad, you're gonna see little crumbs left behind most of the time, especially most croutons kind of flake off. Can you have a cheat day? No, you know, somebody who has a food allergy can't have a cheat day either. That would be nice, probably, for all of us to be able to have a cheat day when we have food allergies or see like disease or glue intolerance, but no, we can't. And a little bit won't hurt you. You could talk, you know, again, relate it to a food allergy. No, a little bit will hurt somebody with a food allergy. It's similar, but it's a different system that is hurting here. So try to use a little bit of humor and kind of keep it light, that'll make it a lot less stressful. Then I want you to focus on what matters. This is very important mindset to have here. You do not need to teach immunity pathology, gastrointestinal science or diseases in there. You just need them to understand that contamination matters, symptoms aren't always immediate or obvious, and safety matters. We don't need everyone to become a celiac or gluten intolerance expert. We just need them to understand enough to help keep us safe. That's what we need. So over-explaining sometimes can be a bit of a problem and cause them not to retain any of the information. So, next I want to talk about different conversations to different people because there's going to be a different amount of information you give to different people. So sometimes I'll have a casual acquaintance, somebody I just met, and they'll ask about it. So for that one, I do a short explanation, something very brief, very simple. And then I wait and see if they have more questions. That's how I like to approach it, pretty much for everybody. Now, if it's a friend, again, if they're not a super close friend, I'm gonna probably do that short explanation. If they're a bit closer, I might do a little bit more detail. They're probably going to have more questions anyway and ask more details too. Now, if it's a family member, I usually discuss a little bit more. Usually there, again, we're getting you know more closer to the close-to-you level as far as relationship goes. So they're going to be probably more curious. But again, I always step it through this. I start with that simple explanation and kind of let them lead the conversation. But typically, you know, casual acquaintance is going to be short, a friend is going to be a little bit more detailed, and family is going to be even more detailed generally. But I just start stepping through this method here of starting simple and as react to their questions and give them more information as they seem curious about it. Because not everyone needs the same amount of information, and some people honestly don't care, which sounds harsh, but they may not care. It's not an important part of their world, so it's very normal. So give them the information that they seem to be asking for is the key here. And then something I've had to work on is giving grace where I can. This is so important to balance this because people will make mistakes. I've had super well-meaning friends and relatives accidentally gluten me, and they really, really were trying hard. And so next time I just either tried to make sure that they, you know, cooked things or made things in a way that's that kept me safe. You know, I would be very gentle on, well, I think if you did this, you know, it would help me feel better next time. We're all learning here, they're learning, they're wanting to help you. So we want to appreciate their good intentions and realize that there's a learning curve.

Handling Questions With Light Humor

Carrie Saunders 9:45

And when I've done that with people who are close to me, they receive it really well and they do much better next time. And I have people who I can trust to cook for me now, which is a good thing. Now, what you can do though is if you know, you know, and you're in that situation where you know somebody's done something and they've tried to accommodate you, but you know there's they did something not quite right and you're going to get sick. It's okay to say, I'm going to bring my own food. If if you it's this kind of like something that they do a lot and they accidentally mess up. Or if you're in the moment and you're there and you see something happen that's not going to make you safe, you can say, no thanks. I'm going to pass on that. You can just say no thanks. People don't question that much. If you say no thanks to a food item, you just may not want it, right? They can simply think that in their head, not think, oh, I didn't make this safe for her or him. So you can just simply say no thanks, and that's fine. We tend to overcomplicate it when it becomes a medical issue, which is completely normal in our brain. But I found just simply saying no thanks to a specific food item, I'm not hungry, something like that is perfectly fine. You don't have to give any more explanation on top of that. So a quick recap is we want to keep explanation simple. Start there first, and you can you gradually deepen your explanation as they seem curious about it and as they want more information. We want to also explain contamination with examples when our friends and family ask for that. We want to focus on what matters most to us. Could it be the relationship? And you just say no thanks to whatever food they have. Or are they one of those people who really want to figure it out? Then you can focus on that too. We want to tailor that conversation to the person, and we want to appreciate their effort, but still maintain our boundaries to keep us safe. At the end of the day, most people who care about you want to do the right thing. They just don't always know what that thing is. And sometimes the best thing we can do is give them simple explanations they can actually remember because understanding creates

Boundaries, Grace, And Quick Recap

Carrie Saunders 11:55

safer experiences for everyone. Thank you for listening to this episode of the Gluten Free Engineer. If you found value in this story, please share it with someone who might need encouragement on their own gluten-free journey. For more tips, recipes, resources, and even links to my YouTube channel, head on over to theglutenfreeengineer.com. It's your one-stop hub to make gluten-free living simple, fun, and full of flavor. And don't forget to subscribe so you never miss out on an episode. And we will see you next week. The Gluten Free Engineer Podcast is for informational and entertainment purposes only. I share my personal experiences and stories about living with celiac disease and navigating a gluten free lifestyle. This podcast does not provide medical advice. Always consult with a qualified healthcare professional for medical questions, concerns, or advice specific to your health.