The Healthy Celiac Podcast
Welcome to The Healthy Celiac Podcast—the go-to podcast for women with celiac disease! This podcast is designed to help you thrive beyond your diagnosis and embrace life to the fullest because you are so much more than just a woman with celiac disease.
Hosted by Certified Health Coach Belinda Whelan, who specializes in follow-up care for women with celiac disease, each episode is a blend of practical advice, personal stories, and expert interviews. Belinda shares valuable insights on everything from navigating a gluten free lifestyle to managing the emotional aspects of celiac disease.
Join me as we explore topics that empower you to take control of your health, and discover joy in every meal and moment. Tune in for practical advice and support as we navigate the challenges of celiac disease and empower you to live confidently.
To find out how Belinda can support you, visit her website www.belindawhelan.com and while you're there be sure to download your FREE eBook '11 Mistakes People Make Living Gluten Free'.
For collaborations, please email me info@belindawhelan.com (no MLM opportunities please. 😊)
The Healthy Celiac Podcast
Breaking Stigmas: Men’s Health, Celiac Disease, and Ben Hampton’s Story Ep. 189
What happens when a stubborn bug in 2020 turns into a life-altering diagnosis? Ben Hampton's story is one of resilience and discovery as he battled mysterious symptoms like brain fog and weight loss, ultimately leading to his celiac disease diagnosis. As my guest on the Healthy Celiac Podcast, Ben shares his journey through the frustrating maze of getting medical answers amid a global pandemic, highlighting the often-ignored issue of men's health and the importance of listening to our bodies.
Throughout our conversation, we delve into the emotional aspects of Ben's diagnosis, the critical role of a friend's guidance, and the relief that came with finally understanding his health concerns. We discuss the vital importance of testing, especially for families with a history of related conditions, and how simple dietary changes can drastically improve life with celiac disease. Ben also shares how his personal experience inspired him to transition from a music career to advocacy, focusing on raising awareness through his platform, www.glutenfreefamily.com.au.
From reshaping the stigma around men's health to fostering community support and awareness, this episode offers valuable insights into the evolving conversations around celiac disease. We explore the societal shift towards better understanding and accommodation of dietary needs, and how these changes can lead to a future where celiac disease is as well-known and managed as other common conditions. Join us as we aim to inspire, educate, and advocate for a healthier, more informed society.
Find out how Ultimate Celiac System can support your Celiac journey here https://belindawhelantraining.com/ultimate-celiac-system
Wish you could get gluten free meals on the table fast that the whole family will love? Check out Meal Plans Made Easy
https://belindawhelantraining.com/gluten-free-meal-plans-made-easy
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Music Credit bensound.com
All right, welcome back to this week's episode of the Healthy Celiac Podcast. I've got an amazing guest on the show today to talk with us about his journey with celiac disease, and he's a fellow podcaster as well, so he's going to tell us all about his new ventures with his new website and things that have been going on for him. So I'd love you to welcome to the show, ben Hampton. Hey Ben, how you going?
Speaker 2:Hey, good, and yourself Belinda.
Speaker 1:I am great. Thank you so much for being on the show. It's wonderful to have you here.
Speaker 2:Thank you so much for allowing me to come on and for coming on my show as well. We've been chatting ever since and been chatting for a long time, and I've been listening to your pod and just gained so much from it. I'm sure, sure, it sure would be cool chat, just like chatting about celiac, but also about podcasting and yeah, yeah, absolutely.
Speaker 1:So. I thought it'd be really cool to share your story, ben, because you know, women are really good at going to the doctors when something's wrong with them and getting answers, and what I see is men not to stereotype or anything, but what we see is men seem to ignore things a little bit more than what women do and, I guess, don't go to the doctors quite as easily or as often as women. So I'd love you to share your story with everyone, for you know how you went about getting your diagnosis, what was happening in the lead up to your diagnosis, you know what happened. Tell us. Tell us your story so that you can inspire other men not to ignore their symptoms.
Speaker 2:Yeah for sure. Yeah, I think you hit the nail on the head when you said that guys are really bad at, you know, speaking up about their physical and mental health. And that's been something I've been really working on since my own diagnosis and sort of figuring out this whole, you know, celiac diagnosis and going gluten free and figuring out how to look after my physical and mental health. But, yeah, things really kicked off, I would say in 2020, the whole family caught a gastro bug. My eldest daughter at the time and my wife pretty much recovered in like, um, the whole family caught a gastro bug. Um, my eldest daughter at the time and my wife pretty much recovered in like it was a bad one. It lingered around for a while, um, with both of them and myself, but, um, yeah, they recovered in like a week or so and they were sort of back to the normal, their normal selves, but I just it just attacked me so bad and I um recovered for a little while and then I just go back and it'd be like I was having this gastro bug again, like the same symptoms would come up and all the GI stuff, um, and you know the, the vomiting and diarrhea and, um, and brain fog was coming about at that point and uh, but it, all these symptoms just kept lingering.
Speaker 2:So I kept on going back to the GP and it was COVID. It it was during COVID as well, so it was hard to get in with the GP, um, and when I'd sit down I'd sort of feel really rushed and um, uh, but I was explaining you all these symptoms I had and this went on for months and months, and months and basically the answer was look, I think your body's just recovering. Uh, we might send you for some tests eventually if this keeps on going and just sort of, you know, take some probiotics and see how you go. Um, and so I went away and took that advice and oh, and they did say like don't, don't change your diet whatsoever, and uh, and I said okay, yep, um, no problems, I'll just keep on doing what I'm doing At this stage.
Speaker 2:Weight was dropping off me. I'm a pretty small guy anyway, but I was probably around 70 kilos. But I lost 10 kilos from the point of when the symptoms started to diagnosis and that was the most worrying thing, that the weight was just dropping off me and I wasn't doing anything different. I I was still exercising the same, like going to the gym, the same amount of time, not changing my diet like whatsoever, just eating the same sort of stuff. But I just kept on having these lingering symptoms like really intensely bad stomach pain Couldn't put it down to a certain food or anything at the time and just brain fog, could not think clearly whatsoever.
Speaker 2:Kept on getting all this joint pain and locking up in my back and just, uh, like pretty much everywhere I'd be bending over at work and just like literally lock up and not be able to get back up, Um, and just huge, huge mood swings like so up and down, um, I would go from feeling really, really down at one point to just feeling extremely anxious, to feeling just like lethargic, um, and it would just be this rollercoaster, uh, and my head was just all over the shop. So I just kept on going back to the GP. I probably had three or four visits um asking for several tests, and so they sent me off for, initially, an ultrasound, uh, then we had a CT, um, an MRI, uh, and we had all the full, you know um blood tests done, the full blood count. That's, that's on there, you know, these days, not counting celiac, unfortunately, um, but had everything tested, um, and even had a stool test done as well, several stool tests, and they all came back normal, like everything was normal, except for very slight markers on my liver. So everything was within normal range, um, but the liver markers were there.
Speaker 2:So the yeah, the GP said, basically, that's to be expected, you've been through all these bouts of, you know, recurring gastro bugs, um, just see how you're going. And I was, I said in the last appointment. I just said, look, I think this is diet related. I, I've, I've started keeping a food journal out of desperation and I found yeah, I just had to.
Speaker 2:At that point I was like what is going on, um, and I found that you know breads and pastas and beer, um, and like all the gluten containing stuff that I know now was causing me symptoms. And my wife Beck actually said at the time she was like okay, maybe you have like a gluten intolerance and I was like what the hell is gluten? I don't know what that is Like. My knowledge was just like minimal. So, yeah, I basically took that food journal back to the GP and they said said I would not change your diet whatsoever. I really don't think it's food related.
Speaker 2:I, belinda, seriously, I got to the point where I was just like I was, I thought it was all in my head and I remember sitting down with my wife, we were just looking at each other at dinner time and like I was just like a gaunt, like frail shell, and I was just basically like I don't know what's going on. And she was looking at me and basically put our eldest daughter down that night, I think, and we just had a chat and she's like, look, maybe you need to, you know, go see someone and talk to someone about this. Like maybe this is, you know, not a physical thing, maybe this is something else that's. And I and I was basically convinced, so I was like yeah, okay, she means psychological, yeah, yeah, yeah maybe this is, you've had all the testing done.
Speaker 2:And I thought the same. At that point I was like, okay, maybe this is just all in my head, um, and I was just I. I was, I was convinced I had some sort of, you know, terminal illness that no one knew about. I was like writing a diary um entry for my daughter because I thought I'm not going to be here, so I'm just I'm just going to like just going to start journaling for her and show her that it was pretty dire. And yeah, it just got to that point. And then, very luckily, a friend of ours was diagnosed the year before, in 2019. And she said these symptoms are crazy. And my wife was chatting to her, she works with her. And she said crazy. And my wife was chatting to her, you know she works with her. And she said get, get Ben to go straight, straight down to the GP, ask for celiac serology, like straight away. Um. And so I took that. I asked my GP and my wife actually sat in the room Cause I was like I couldn't ask or like any questions.
Speaker 1:I couldn't speak. They need that person just to advocate for them when they can't think straight.
Speaker 2:Yes, and my wife was more than happy to go down there and do it and like she basically explained look, ben needs to get this done Cause I, I, I was at the point where my brain fog was so bad I could hardly hold a conversation Like it was so, so bad, um, and so we asked for that and they said, look, yep, we've tried everything else. Actually, there is some like signals there possibly could be very unlikely when to get it like a day or two later came back literally off the charts. They rang me they're like you have to come back in, um straight away. And so I booked an appointment and they said you're severely celiac, um, so yeah, and then had the you know did the gluten challenge went forward. For that. I thought it was bonkers that they said you had to, you know, eat gluten for six weeks in the lead up to get a diagnosis, like you have to eat the poison knowingly it is, but she's, you know, they did say like that's the only way to like a hundred percent.
Speaker 2:No, that's the gold standard in Australia. So did that, um, and the yeah, yeah, the gastroenterologist, basically before I got put under, said look, I know 100%, you have celiac. I'm just checking. There's no like serious damage that you've done. Um, but they found like a few, uh, a few ulcers and that sort of thing, but they were, they were all fine, um, and have pretty much healed up since. So, uh, yeah, had the diagnosis two days before Chrissy in 2020.
Speaker 1:Wow, oh my God, your story is so similar to mine in that they knew my blood was off the charts. I didn't, thankfully, have to do the biopsy and my doctor said to me I'm going to tell you your results in the new year. He was like I'm not telling you before Christmas. Wow, there's too much to deal with.
Speaker 2:And I went back in the new year and that's when he told me but wow, two days before Christmas, that's a lot to deal with. How did you cope with that? Uh, to be honest, like I thought I think I was just completely relieved like in the lead up to that, like that entire year, I was just I, I I did think I was dying. Like I was like pretty much convinced, yeah, like that something was happening that they couldn't figure out, and like I was on the way out, so to get a diagnosis and to know that it was a diet that was going to treat it Like they did say I remember ringing the gastroenterologist office and the receptionist just said look, have Chrissy, just just go all out during Chrissy, I'm like I am done with gluten, do not put gluten near me.
Speaker 2:Like, just give me this test. I want to go gluten free. And, um, I, I just you know I know people talk about like grieving gluten, but I just didn't have, I just wasn't in the space to do that. So I'm more like I know that it's. I do miss certain foods occasionally, but for the most part, I'm just like I'm so thankful for the diagnosis and to know that, yeah, that it is just a diet that can keep us healthy.
Speaker 2:So yeah.
Speaker 1:Oh, absolutely Far out. That's crazy, isn't it? And like your story is so similar to so many people's in that the doctors just don't know, do they? They just fob us off. I was the same as you it took about a year to get a diagnosis. It was just one thing after another, told all these ridiculous things, and then finally a doctor that actually had a clue, just like your friend, like how amazing, you know, do you often sit there and go? If it wasn't for her, how long would I have carried on dealing with that, Like if it wasn't for that one particular person saying, hey, you've got to go get tested, far out, like to think what could have continued to happen.
Speaker 2:Yeah, I have no idea. I don't know where I would be. Yeah, it freaks me out to think about where I would be. Uh, cause I was just, yeah, in a terrible, terrible space, like physically, mentally. I had no idea what was going on.
Speaker 2:So, yeah, to like have an answer and unfortunately, as you say, it is the story of so many um, and like I always say, you know, I'm, I like, I try not to you, not to you know, um, uh, throw too much shade at gps or like any health professionals whatsoever, because I know that, um, you know so many of them have their hearts in the right place and they're doing the absolute best they can. And, like during covid, you know, it was just an insane time for them to and, and that's the thing as well. It is just the lack of awareness in the celiac space as well that you know they have to be across like a ridiculous amount, like a hundred, you know hundreds of different symptoms and diagnoses and it's just you know they're not a specialist in like any of those fields and you do, unfortunately, have to go up to a specialist to get the correct answers. But like, as well, it's not on regular blood screening, which is like I'm a huge advocate for getting it on there, yeah, and chatting to a few people recently. Hopefully in the near future that's going to be happening with some research that they're doing.
Speaker 2:But, yeah, it is ridiculous that it comes down to that, like you're at your end or you have all these symptoms that you know. They call it the clinical chameleon celiac it's. It's fly under the radar so much. But unfortunately, yeah, it takes like the prompting of someone else who's had it, or a family or friend member, or like a health professional as well who may know that, yeah, who has like an affiliation with you know, with celiac disease, or who has been through it themselves, or has you know family member has been through it. So, um, yeah, I have no idea where I would be if it wasn't for her. So anytime we catch up now it's great, Like she's, they just live just down the road. Um, they have kids around our same age and it's just, it's so cool, like catching up and just, you know we can talk about, you know getting gluten and gluten-free products coming out and just and chat about it. Um, yeah, she, she's, uh, she's, yeah, she's awesome and they're they're great friends of ours. So, um, and in more ways than one now.
Speaker 1:Yeah, oh that's so cool. So do you think that having the gastro was what triggered it for you? Did you have any form of those symptoms prior to that, or did it all kind of just spiral from that episode of being sick?
Speaker 2:Yeah, I mean that's when it really really ramped up. But I can like speaking to my wife and looking back and everything in hindsight, like I speak to my guests about this all the time they're like, no, actually you know what, you know what. Like I remember you know symptoms in primary school or high school and I was definitely one of those kids who had signs and signals of it. Like I had the um, the shadows under the eyes, you know the dark circles under the eyes, for since I was a little little kid, yeah, but since I was in primary school, um would react to certain foods and have issues with my gut, um, not be able to focus, like brain fog was uh horrible at school. Um, and just didn't sit like nothing really sunk in.
Speaker 2:And uh yeah, definitely had, and later on as well, like into my early twenties and mid twenties, I was having a lot of like gut issues, just just flare ups in the gut and I was just thinking, oh, I must've just eaten something a bit bad, or always being put down to like you know. Oh, that like the curry, or something that I ate, or like maybe something was off that I made Um, and to granted, like I was eating a whole heap of terrible food, um, and not really treating my body that well, and I think that that's like unfortunately, that's how it was sort of treated when I would go maybe have a checkup. If I ever did have a checkup, uh, it was always reluctant to go forward to the doctors, um, but when I did and I'd have some health issues going on, like you know, gut related, or headaches, tons of headaches like there go so many migraines?
Speaker 2:um, yeah, throughout, like early to mid-20s horrible ones with the aura, uh, and then just, yeah, like really light, sensitive and just having to basically go to bed for you know the rest of the day when they come on. But, um, yeah, yeah, whenever I go to the doctors to try and figure out what was happening, it would always kind of be fobbed off to like what's your you know lifestyle like at the moment.
Speaker 2:It's like well, I'm in a band and I'm drinking quite a lot and you know um, and probably not eating the right sort of diet, and that's like well, that's, you know, that's what it's coming.
Speaker 1:That's the easy answer, isn't it?
Speaker 2:yeah, yeah um, which is probably part of it, to be honest, but but at the same time, there may have been celiac in the background too.
Speaker 1:Yeah, definitely, definitely sounds like you've had a lot of symptoms over the years, but maybe having the gastro just full blown just went. Here you go. This is the last straw kind of thing, and it's just Wow.
Speaker 2:Now I remember a while back we were talking about your brother and trying to get him to get tested. So has he since been tested? I'm assuming he has done the right thing, but he went forward for the gastroscopy and I think he had a colonoscopy at the same time, so they did both ends and everything came back clear. But they did find that he is now intolerant to disaccharides.
Speaker 2:I'm pretty sure, oh, okay, disaccharides and he has a lactose intolerance and he's been pretty much diagnosed with IBS on top of that too. But yeah, non-celiac gluten sensitive yeah, okay. But but he's, yeah, it's. It's weird as well because he's sort of helping us out with this new venture with the website, and so, yeah, he's sort of, you know, a gluten part of a gluten-free family in more ways than one.
Speaker 1:Yeah, yeah, yeah, but yeah it's, it's, it's.
Speaker 2:We were sitting chatting, um, we're just sitting down doing an episode not long ago, a few weeks back, and he basically said, like, if it wasn't for your journey like there, there's no way I would be going forward for like the testing around this sort of stuff. So, um, yeah, it's, uh, I'm just so glad for him as well that he's gone forward and done the correct thing and he but again had some terrible advice from from health professionals and just being bounced around to uh, quite sort of untrained dietitians and nutritionists and, um, and and different you know GPs and health professionals, uh, getting terrible, you know some questionable around things um, um which is just shocking, but again, kind of doesn't surprise me.
Speaker 2:Um, but yeah, at the moment, yeah, non-celiac glint sense um, sensitive, but still pretty much reacts, even like the same way that I do. Like he had a um he didn't know about oat milk, uh, so he had a um a latte just not long ago and thinks that just even from that he had terrible symptoms, like pretty much for two or three days. Yeah, things started to resolve.
Speaker 1:Yeah, amazing. Well, it's good that he's got some answers and he's got you to advocate for him and support him. And you know, working together that's so cool, like that's the ultimate dream, isn't it? Working with your family and having them to support you? So that's so cool, like that's the ultimate dream, isn't it? Working with your family and and having them to support you.
Speaker 2:So that's pretty cool, yeah, yeah, no, it's, it's nice that we can sort of connect in like we've sort of, you know, grown um, we've bonded a lot more, like over the last probably like 10 years or so, yeah and um, and going through this sort of stuff as well, like you know, gotten uh physical and mental health journeys as well. It's sort of bonded us a little bit further. So it's yeah, it's cool for yeah to be doing that together. Yeah, yeah, definitely.
Speaker 1:And has anyone else in your family had a diagnosis or been tested?
Speaker 2:No, but they definitely should. Yeah, it's often like and I speak to so many people about this like it's an awkward thing to chat to. You know, often like parents or grandparents or people from different generations. And look, I do totally understand it. But I'm constantly saying to friends and family if you haven't been tested for celiac, just do it and just see.
Speaker 2:Yeah, it's worth ruling it, you know um, exactly just ruling it out as something that's going on, because, yeah, they've had a lot of stuff that could be um related to celiac. I've got a yeah ton of family members who've had a bunch of health issues, but I do have one family member, so my cousin's um daughter, so, yeah, I don't know if that's like a second cousin or a cousin I always get confused.
Speaker 2:But yeah, she's the only one who's who's officially diagnosed in the family. But, uh, I think a few other family members do have it. We have type 1 diabetes, which runs in the family too, and um, some other you know related health conditions. So, um, yeah, I wish that other family members were sort of more proactive about it and especially I try to give them, you know, some episodes to listen to related to their conditions.
Speaker 2:But sometimes it can just be you know sort of in one ear and out the other, but you know at the same time. That's why we chat about this right Like to try and get that information out there.
Speaker 1:Yeah, and you know you can only do what you can do. It's up to that individual to go and get tested. And you might've heard my story with my brother. He ignored his symptoms for years and years and years and then he finally couldn't handle it any longer because he had, like skin conditions all over his body and he was just so irritated and itchy and he kept coming to me for help. I'm like you're just getting given a band-aid from the doctors. They're just giving you cream. You need to go get a celiac disease diagnosis.
Speaker 1:And he's like a different person since he got his diagnosis, like it's crazy to think how many years he put up with feeling like rubbish and now, like he's so healthy, he's so positive and it's just yeah, it's been the best outcome for him to get a diagnosis.
Speaker 2:So that's awesome and yeah, and as you say, like getting to that root cause of the issue as well. Because, yeah, like my brother's in the same situation, like I opened up his cabinet the other day and he and I was like what the hell is going on here. He's like I know I look like a pharmacy, don't I? But that's how many like pills and you know treatments and various like you know supplements and stuff that he was getting, when you know it was, yeah, he needed to do some further testing and some other further diagnoses. But, yeah, yeah, it's crazy.
Speaker 1:Yeah, and diet is just the answer for so many people, for so many problems. It's crazy, yeah, amazing. So I love that. What you do is getting experts on your show and advocating for celiac disease and really spreading the message and getting it out there. You think kind of sparked that in you. What inspired you to start a podcast and share with the world more about celiac disease? Was it because of your diagnosis and how much you struggled or what? What kind of sparked that idea to get it out there?
Speaker 2:Yeah, it was pretty much just a combination of of, like everything that happens. So, um, like since the diagnosis, since I got the positive blood test, my wife and I sat down and we're like, okay, what is this thing? Like? Let's like, let's figure it out. And um, and we sat down and watched YouTube videos and kind of went down this deep rabbit hole and we were sort of looking at each other like, why doesn't, why isn't this out there? Like there must be other people going through this. So she said, why don't you start up an Instagram page? I'm sure there's other people going through this.
Speaker 2:I'm like I don't like Instagram, I don't want to get into that. I was like, maybe like a Facebook page or something and I can just do something locally and chat to people. But she was like, no, just do it. And so I started researching during it was during COVID, so I just kind of had the time to be able to do this sort of stuff, so sat down, figured out how to do an Instagram page and um, and then I was just blown away by like how many people I started to connect with and chat to, people like in the U S U K, Europe, and they were sharing these stories and I was like, oh my God, this is like.
Speaker 2:This is nearly identical to what I've gone through as well, and they all have these really similar stories, a bit different because they're in different parts of the world and different regulations and ways of dealing with health professionals.
Speaker 2:But I was just thinking like, wow, this is like some of these stories are like crazy. These stories are intense and crazy and I just couldn't believe that there isn't enough awareness about it, given that it is related to so many, like you know, between 250 and 300 symptoms and so many different health conditions relate to it. Um, and there isn't, you know, and it's a diet. It's not, yeah, kill, or it's not like you know another medication or anything that treats it. It's a freaking diet. Like it's, um, it just blew my mind and I was like it's got to start like chatting about this and and like sharing these stories from the people I'm chatting to, and I'm just one of those sort of people as well that once I pick up something, I'm just like I become a bit obsessed and totally addicted, and I'm going through actual diagnosis for that currently, and so I'm having a follow-up appointment with a psychologist, so probably a lot of the way my brain works will make sense for myself.
Speaker 2:But yeah, I think I've just got that sort of personality and I just you know, I had no idea how to you know, start up an Instagram page, like just threw myself into that, figured out as I went, no idea what the podcast. You have been such a help with that when I was like I want to start one up and you're like, maybe do this sort of stuff and sign up to you know these guys and that has been like so helpful as well. And I think, just finding people in this community where it's like, do you know what?
Speaker 1:we're all on the same mission, let's just help each other, you know, get to that goal of, you know, just constantly spreading awareness about this thing and it helps you feel less alone, doesn't it? It makes you feel like you're not the, you know, the odd one out in the group. You're part of something much bigger than just yourself. It's pretty cool.
Speaker 2:Yes, yeah, definitely, and like, just like speaking to like health professionals and stuff.
Speaker 2:I always feel so, so out of my depth, like I've.
Speaker 2:You know, I never thought I would be a guy like speaking up about you know physical and mental health and like I'm, I come from like a you know a band background where you know I I thought I was going to be like a drummer in like a in a band, like that was my goal initially, and so to be like talking about, you know, dietary requirements and gut health and mental health.
Speaker 2:It's never something I thought I would do, but I'm loving it so much just seeing you know how much it's related to and how many different rabbit holes that you, that you go down, um, and it's just, yeah, it's blown my mind and figuring out, you know, the gut brain axis and the microbiome and um, all of these people asking these huge questions around this disease and and what it's related to and where we're trying to take it in the future, that just you, you know like, urge me on to, and just continuing to hear like these, the stories of so many like yourself and me and, um, and so many others in this community, it's like, no, this isn't good enough.
Speaker 2:You know, like we, we can't just like sit back and let you know, like everybody, basically not talk about this and um and just breaking down those stigmas of like we, we got to talk about this stuff, whether it's, you know, women or men, um, we're all kind of affected by it because it's not only ourselves going through it, Like I found that in my own journey and the guests that I have on the pod. It affects everybody. It affects, you know, their friends and family.
Speaker 2:Um they worry about the person yeah, person, yeah and um. It just changes that whole dynamic. So I think, yeah, the more we can talk about it, the better off we'll be in the future.
Speaker 1:Yeah yeah, totally agree. Um, I went out for a meal the other night at our local pub with about 20 mums from our kids school awesome and they used to have gluten-free on the menu and they changed it to gluten reduced and I was just like what is this nonsense? And nearly every person at that table I'm not overly close with all of them, but I'm close with a handful of them, nearly everyone on that table checked in with me and they're like are you going to be able to get something to eat, belinda? Like you got to get gluten-free. Like they all were really thoughtful and checking in, like that's so cool that you know, with a big group of women, that they took the time to check in on me and make sure that I was going to be able to get something safe to eat. You know, if that had been 10 years ago, it probably wouldn't have even been on their radar, probably wouldn't have even been something that had been thought about. So it was actually really nice to have that awareness and more people you know showing up for me as well and and you would know that as well Like, the more you talk about it, the easier it is for other people to look after us and respect us.
Speaker 1:And you know, when I work with people and you know they say, oh, my family did this or my loved one did that, it's like you've really got to advocate for yourself, don't you? The more you talk about it, the more you speak up, the more others are going to look after you. And that is the biggest thing that I see in our community is the ones that are suffering are the ones that aren't talking about it enough. So I think what you and I do is really helping so many people to be that voice and to get the word out there.
Speaker 1:So that is huge as well, isn't it?
Speaker 2:Definitely. And it's so cool that, like everybody yeah, there was like checking in on you and that's just it just it kind of affirms that like everything you're doing as awkward and as, like you know, sometimes, just like it feels it feels yuck sometimes to have to do that, especially when you're newly diagnosed. But yeah, similarly, just like I've gotten to that point now where I'm like you know what, like this is my health If I don't like if I have this little awkward conversation with a wait staff or with a manager or something. I've kind of brushed that aside now because it's like you know what, that having that little conversation that may take a couple of minutes and I'm probably going to walk out if I'm not happy with the answers that's better than being like bedridden for like the next couple of days, or like just having those symptoms.
Speaker 2:And the same goes with you know, um, yeah, really, any decision in my own physical and mental health, like going for the checkups, um, you know, getting a gym session in like, doing some breath work, doing an ice bike, like whatever it takes to just sort of, you know, have your own physical and mental health in check and then you're able to bring your full self, you know, and yeah, to like to other people around you, to your friends and family, but, um, yeah, found that, uh, yeah, it's, it's quite, it's very difficult's very difficult. And I found that, uh, even just going out with my mates as well, um, my male, my, my closest male mates, like it is it initially is just so awkward to sort of, you know, speak up and say, can I have, like you know, can I have the gluten-free, you know menu? And I did feel really awkward about that at first. And you know like some of the friends were like, you know, just making comments. It's like having first.
Speaker 2:And you know, like some of the friends were like, you know, just making comments and like having a dig and like, you know, and it's something that guys do as well and like it's fine to a point until you know it's not until it starts to take its toll. But you know, but now they're the ones who are like speaking up for me and they'll, like you know, be asking like straight away, like the ones who are like speaking up for me and they'll, like you know, be asking like straight away, like, oh, did you ask if it was? You know, if they like clean the pans and and so they'll be asking follow-ups and they're asking, you know how, like my celiac disease is going at the moment, if I've had any flare-ups, and how that is all is because I think it's that age as well.
Speaker 2:We're now in our like mid-30s and we're kind of, you know, talking about all these all these things and chatting about, you know, our wives being, you know, pregnant or um, or having given birth, and sort of chatting about having kids, and we're sort of openly much more talking about physical and mental health now which is it's so much better than than when I was like a teenager and in my 20s um it was and that culture still exists, that like toxic masculinity of like not really speaking up about your health, um, but I've seen too many friends and uh and family get into just a horrible situation with you know not talking.
Speaker 2:So I figure, you know, the more we can talk about stuff, the better. Um, and as you say, like that's, I always talk about this as well, like on the pod and with various guests, like talking about this stuff. Now, it might seem awkward and it might put us in a little bit of like a oh it's, it just sucks talking about this all the time and you and I like literally talk about it like all the time, but like that's not only going to help us. It's going to help, you know, the current celiac and gluten-free generation, but it's also going to help our kids and you know the following generation is coming up and hopefully, by us talking the hell out of this thing and just spreading as much awareness about it as possible, hopefully it won't even be a thing for them and maybe there'll be a cure or, you know, like a vaccine or something for it in the future and they won't need to, you know, talk up as much as we do now.
Speaker 1:So yeah, it's funny because things like peanut allergies everyone knows what a peanut allergy is.
Speaker 1:I don't think you would come across anyone that's like oh, what's a peanut allergy? What happens to me if I have a peanut allergy? Everyone knows what that is. And one day maybe everyone will be like oh yeah, I know what celiac disease is and they understand what it is. And I mean, I've been living with celiac disease for over 15 years and in that period of time the amount of awareness has grown dramatically. Like ridiculous, how much different it is now compared to back then. So I can only imagine you know where we will be in another 15 years. So it is pretty powerful. Just, you know, getting the word out there and speaking about it and, yeah, that is, that's the biggest thing, I think more awareness, yeah, and you would have seen so many changes.
Speaker 2:And I feel like I'm always just like on the cusp of this, like I've only, you know, just got diagnosed in 2020, and there's like, yeah, people who have been like living with it, like yourself, for for like a decade or like several decades, and like they've seen so many, so so many changes in like awareness or, like you know, going through the fad culture, like that fad period, and, um, it's, yeah, it's. It's just bonkers to think like how far it's come. But just as soon as I was diagnosed, I was like, why is this not on regular bloods? I don, I literally do not get it. I don't get like that. That's like a light bulb moment for me. It I just I, I literally don't understand why. And, um, yeah, chatting to uh sitting down and chatting to um jason tied in just recently, um, it looks like maybe that will you know, it will be a possibility to have population screening happening sooner than later with this new process to diagnosis with the IL-2, which would be freaking amazing.
Speaker 1:That would just change the game. Yeah, definitely, and so many people wouldn't suffer for so long. You know, thinking diagnosis younger, earlier, rather than suffering for decades. I mean you would talk to people that would suffer for decades before they get a diagnosis like that just blows my mind that you know people are suffering for that long and not getting answers.
Speaker 2:but yeah, if they were screened whenever they went to the doctors and got bloods taken, that would be amazing yeah, to have that answer up front instead of going through, you know, often like tens of thousands of dollars, right, like the time and energy that it takes and time off work. Um, like I feel lucky in myself I had to take a couple of weeks off work, like close to christmas, but at the same time, like I feel like I had a pretty quick diagnosis from when my symptoms started, um, just because I like was probably just, yeah, became obsessed with figuring out what the answer was, but at the same time, like it's just not fair that people go on for years and years and years without an answer and then it comes to like some, yeah, dire situation that they actually get one.
Speaker 1:Yeah, exactly, totally agree. So I would love you to tell us now about your website and your podcast. And for those that are watching the episode on youtube, you can see in the corner there ben's got I'm pretty sure it's one of your new t-shirts hanging up there. Yeah, yeah, the one shot at a time. Yeah, it's a bit of a slogan.
Speaker 2:I've got um just, yeah, just raising celiac disease awareness. You know um not looking at it as like a huge mammoth effort, but just like literally just having, you know, one shot at a time with a wait staff or with a family member or a friend or a health professional. Yeah, yeah.
Speaker 1:Powerful, so tell us about your website, where people can find you, and a bit more about your podcast as well.
Speaker 2:Yeah, for sure.
Speaker 2:So we just literally just started up a website a couple of weeks back. It's a glutenfreefamilycomau um. So that's got everything that we do with our instagram page, with the events where we're holding as well um, we've done three of them this year and hopefully, hopefully, we'll do some more in the future as well, next year. Um, I've got the podcast feed as well. I've got a gluten-free podcast, um, and yeah, it's just weekly show, um, much like this into, you know, a mix of doing solo apps and guest episodes. And yeah, what else is on there the shop, and we've just got two t-shirt designs on there at the moment, but hopefully we'll get some more stuff up there in the future.
Speaker 2:And then we've just got discounts. We're just trying to, like, you know, showcase, like all the brands that we've worked with and that's. You know we can just share some discount codes because it's freaking. You know, showcase, like all the brands that we've worked with, um, and that's. You know we can just share some discount codes cause it's fricking. You know it's tough. Uh, the gluten free tax on stuff at the moment Um, so, yeah, if we can help out the community in any way in that regards, um, yeah, that's what we want to do, so.
Speaker 1:Fantastic, so go check that out if you haven't already, and I will also pop any links below as well, in the show notes, anything you wanted to add before we sign off for the day, then?
Speaker 2:um, I think just what, like we've hit on here today, I think we've, yeah, we chatted about a heap of stuff, but, um, I think, just like what you said before as well, that like you're not alone if you're going through this diagnosis process of you you know getting a celiac diagnosis um, chat to so many people and I know you do as well yourself just, um, just reach out to people, like use the resources that are there, because there's so many resources, like you said now these days, like online, um, there's podcasts, uh, there's Instagram pages, there's Facebook groups. Like you're not alone going through this. And I think, like finding a supportive community is like half the battle, because I found, you know, being in very niche communities in the past, like metal bands and like you know prog rock groups and stuff. Like you can feel like you know a bit of an outsider when you walk into other, you know bigger groups, but knowing that you're, you know you're understood and you, you know bigger groups, but knowing that you're, you know you're understood and you, you know people are going through what you're going through. It's so freaking powerful.
Speaker 2:Um, so I think just, yeah, like stick it out, um, and if you're going through that process at the moment, or if you're newly diagnosed, like don't stop just learning and just taking stuff on board but you'll make mistakes. I've made a ton of mistakes and you just, yeah, continually learn and just connect with people who understand you and who are like supportive around you and and don't dismiss what you're going through.
Speaker 1:So yeah, Powerful message Perfect. That is amazing to sign off on. Thank you so much for chatting with me today, ben. It's been awesome talking with you and thanks everyone for listening and I look forward to talking with you again on next week's show. Take care, bye.
Speaker 2:Thanks, Hayes for having me Belinda Cheers.
