The Healthy Celiac Podcast

What is Celiac Disease? - A Guide for Friends and Family

August 29, 2022 Belinda Whelan Season 1 Episode 72
The Healthy Celiac Podcast
What is Celiac Disease? - A Guide for Friends and Family
Show Notes Transcript

If you have a loved one or friend who has been diagnosed with Celiac (Coeliac) Disease, this episode will help you understand their needs - from what gluten is, how to support your friend and educate you to learn the ins and outs of their diagnosis. 

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Music Credit 

Speaker 1:

Hello, and welcome to this week's episode of the healthy celiac podcast. My name is Belinda wheelin . And if you are listening to this episode, it could be because someone that you are friends with or a relative of yours has got celiac disease. And they've either shared this with you, or you've stumbled across this podcast to learn more about. So either way, thank you so much for tuning in and being open to learning more about celiac disease. So in this episode, I'm going to give you a breakdown of what celiac disease is and talk to you about how you can support that person in your life that has got celiac disease to make it easier on them, and also on you as a support person. So first up, what is celiac disease? So celiac disease is not just an intolerance to gluten. It is actually an autoimmune disease. So when people don't take celiac disease, seriously, it is very disheartening because it is an autoimmune disease and it is something that we are going to be living with for the rest of our lives. Unless they find a cure. As of today, there is no cure for celiac disease. The only way to deal with celiac disease is to live a 100% gluten free lifestyle. And we're gonna talk about that in a moment, but people living with celiac disease have celiac disease because it's genetic. Okay? So they were passed a gene down to them by a relative. And if that was you, that passed that gene onto them, but you don't have celiac disease. I want you to know that you don't need to feel guilty about this. This is not your fault. This is just part of life and it just happens. So please don't take any of that guilt on board around about one in a hundred people worldwide have got celiac disease, and it's actually estimated that many of those people aren't even properly diagnosed. So there's many people that don't know that they've got celiac disease, but they have all the problems of celiac disease. And don't even know it now <laugh> , there are many, many symptoms of celiac disease and your friend or family member may have already told you what their symptoms are, or they may be too embarrassed to even talk about it. So there's actually over 200 symptoms of celiac disease. And the only way to make those symptoms go away is to eat gluten free . So your friend or family member may have been suffering from these symptoms and gone and got a diagnosis. Or they may have had no symptoms, which is called asymptomatic. Some people have celiac disease without symptoms, and they get a fluke diagnosis. Many people suffer from

Speaker 2:

Low iron and become anemic, and they get a fluke diagnosis for celiac disease, but they haven't actually suffered from any of the other symptoms. And what I hear time and time again is these people aren't taken seriously by their friends and family because they haven't been suffering from the more common side effects such as, you know, bloating and diarrhea, fatigue, brain fog, those types of things. So just because someone hasn't had those types of side effects or symptoms, it doesn't mean that their diagnosis should be taken any less seriously. There is no person that has got celiac disease worse than the next person. Every single person that has celiac disease must eat a strict gluten-free diet. There is never any opportunity for this person to eat just a little bit of gluten or to just have a little bite or any of these things that many people say to us, we cannot have any. And the reason for that is if we eat gluten, our body literally attacks itself, okay. The smallest crumb of gluten. So just say a little piece of crumb off a piece of bread can do damage to our small intestine. So our Vili actually gets damaged when we have gluten. And if you don't know, your Oli is where your body absorbs nutrients. So a person with celiac disease, if their Vili is damaged, they're not absorbing nutrients. So what happens is they get very, very unhealthy, very quickly. They get very sick and it can lead to further implications down the track. It can lead to further autoimmune disorders or diseases, and it can also lead to cancer. So it's important that someone with celiac disease eats a hundred percent gluten free . And this is why this person that has shared this podcast with you is asking for your support and they need you to help them be safe. And look after their body, this diagnosis is something that no one ever wishes for. No, one's trying to be difficult. No, one's trying to put you outta place or make you feel uncomfortable. Or, you know, when they come to your house, they don't want to be a bother. They want to be included. They want to feel part of your family and your friend's circle. They want to be included. That is as simple as it is. So the best thing that you can do is do your very best to make that person in your life feel inclusive, feel included rather. And it's all about education. It's all about asking them as many questions as they feel comfortable with. They might want to talk to you about what their symptoms are when they have gluten. They might wanna talk to you about what types of foods that they enjoy eating. So it's about opening up that communication and talking with them and, and helping them and giving them that support. Because as you know, when you have support from the people around you, it helps you thrive. A person with celiac disease is exactly the same. They need a massive support circle to help them thrive. So a number of ways that you can do this is by listening. It's by being able to, I guess, be a little bit more flexible. So if you are going out for a meal and the person with celiac disease that, you know, says, I can't actually eat at that restaurant, or I can't eat at that cafe because there's nothing safe for me. It could do the world of good for you to say to that person, Hey, why don't you suggest a place that we go and eat? We're somewhere that you feel comfortable going and eating so that we can enjoy a meal together and you are gonna be safe and you're not gonna accidentally get glutened okay . Or if you have, I guess, gone at a limb and you've made gluten free food for your friend or family member, and they've refused it and you've felt rejected. Let's talk about that. A little bit. Many people think they're making gluten free food when it's not actually celiac safe. So we have a very big risk of getting sick from what's called cross contact or cross contamination where people haven't safely prepared food. So they may have made a meal in their kitchen and they haven't used safe breadboards, or they haven't used safe utensils, or they've cooked it amongst other foods. That's not safe. So if someone with celiac disease rejects your food, please don't take it personally, ask how you can improve, ask how you can make it safe for them next time . And if you are having someone with celiac disease over for a meal, my biggest chip for you, because this is what we do with my friends and family. When they have me over for a meal is they take photos of the ingredients of the food that they're preparing and they send it through to me or my husband and we double check it that it's safe. And we make sure that what they're preparing is actually gluten free because it's easy to make mistakes, especially when it's new to people. It's, it's a whole new ballgame for someone with celiac disease. We don't expect you to know 100% straight up how to cope with this as well. So when we're talking about gluten, gluten is actually the protein that is found in wheat oats, Bali , rye, tri , and any hybrids of these wheats.

Speaker 3:

So it's important to look for these ingredients when you are shopping for someone with celiac disease, your best bet is to look for food that says it's gluten free , because then, you know, it's safe to prepare for that person. If you are finding things that don't have labels on them for gluten free , but you have an inkling that it's still gluten free by ingredient. So, you know, something like tin tomatoes obviously would generally be gluten free . It's normally just tin tomatoes and maybe some salt, maybe some water. So something like that is generally safe and won't have a gluten free label on it. So it is a learning curve. And it's, it's, it's one of those things where communication is key. And it's about opening up those doors to communication and talking and asking questions and being supportive of that person in your life and making sure that you're doing your very best to help them . Now, gluten can be found in many foods that people don't even think about. So for you, you might have a bit of an awareness where gluten is found things such as breads, pasts, things like that are very obvious, but it's in many things that we don't generally think about. So things like sources , um, some Gras, perhaps even some sweets treats, things like that. Sometimes even ice cream has gluten in it. So it's not just as simple as cutting out bread and pasta. It's in so many things. So it's not as easy as you might imagine. So again, reading labels, checking them with your person that has celiac disease, making sure that what you're preparing is safe. And, and again, like I said, not being offended. If that person doesn't wanna eat what you've prepared, if someone wants to bring their own food to your house, because they feel safer doing that, just let them do it. Just, just let them be part of your event or gathering family event, whatever it is. And don't make a big deal because they're still learning. They're still trying to get their head around this. If they're new to celiac disease, and if they can prepare their own food and know that it's safe and just bring it along and it not be made a big deal about they're not mocked, they're not teased. They're just included. Not only is that easier on you, that's easier on the person with celiac disease as well. So again, support guidance, clarity on all these different aspects of living with celiac disease can make a huge difference. Now, depending on your relationship with the person that you know, with celiac disease, your level of support can be completely different to the next person. So for me, I'm very lucky. My

Speaker 4:

Mom was diagnosed with celiac disease six months after me. So in that first six months, she would generally buy me treats and things that I could have when I popped around to her house. And she made very simple meals that were easily adapted to being gluten free . And then once she found out she had celiac disease, it was obviously much easier because everything that she cooked was then 100% gluten free . I have some very close friends who we socialize with a lot in the early days of when I was diagnosed with celiac disease. And they were incredible. There there's two lots of friends and they went out and they replaced. So as they replaced things in their kitchen, they replaced them with gluten-free version. So for example, soy source , generally isn't, gluten-free, it's usually got wheat added to it. So just say, they'd run out of their soy source . They would then replace with a gluten-free version of soy source and so on. So it just made it easier that when we would catch up for a meal, they would have many more options already in their pantry. So if this person is someone that's going to be in your life a lot and around at your house, a lot, that could be something that you might like to start doing as well is replacing those options with a gluten free version so that you have it there on hand . And it just makes cooking easier that you don't have to be going out and buying one of everything in a gluten free version when you're cooking for the person that you know, with celiac disease. So that can be a very simple way of supporting them as well. So I hope this guide has helped you give you some ideas on how you can support that person in your life that has celiac disease and help you on your journey to being a better friend or family member and being supportive. And of course, if you haven't already been told, if you are an immediate family member of someone with celiac disease, then it's recommended that you also go and get tested for celiac disease, no matter whether you have symptoms or not, because you could still have celiac disease and it could be doing damage to you. So please look after your health and make sure that you get checked out as well. It's as simple as going along to your doctor and requesting a test for it and going from there. But I hope that this episode has helped guide you and given you some ideas and will help support that person in your life with celiac disease. So thank you so much for listening. I'm genuinely so grateful for you taking the time to listen to this episode. So thanks so much for popping on here and listening. And if you have any questions that you need further advice on, you can always reach out to me via my Instagram, which is the healthy celiac. So thanks again for listening. Take care. And I will talk with you soon.