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
Exploring the World of Jack the Silly-Yak: Resilience, Creativity, and Hope with Alex Mangano Ep. 121
Are you ready to be moved and inspired? Join us as we sit down with Alex Mangano, a brilliant young woman who turned her diagnosis of Celiac disease at 13 into a powerful vehicle for change.
Through her unique blend of creativity and advocacy, Alex crafted a character, Jack the Silly-Yak, who has become a beacon of hope for children living with chronic illnesses. She didn't stop there though; she took it a step further by writing a children's book that not only educates but empowers. Share in her journey and discover how the love and support of her family fueled her passion and helped her navigate the unexpected challenges life threw at her.
But the chronicles of Jack the Silly-Yak don't end there. In the coming conversation, we unravel the intriguing journey of Alex's book and talk about her new series "Giggle and Learn". This series helps children find joy and learn from each other, despite their illnesses.
Alex's book is available for purchase globally, ensuring children from different parts of the world gain access to this inspiring content. So, buckle up and prepare for a heartwarming story of resilience, creativity, and hope as we explore the world of Jack the Silly-Yak with Alex Mangano.
Find Alex's books and Free Kids Activity Downloads here
Coeliac Disease | Jack the Silly Yak | Newcastle
Connect with Alex and Jack The Silly-Yak on Social Media @Jack the SILLY-YAK (@jackthesillyyak) • Instagram photos and videos
Want to know how I've nailed living with Celiac Disease? Ultimate Celiac System has all my exclusive tips, secrets and insights.
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
Join my free community and grab your copy of 11 Mistakes People Make Living Gluten Free here www.belindawhelan.myflodesk.com/11mistakes
Check out my Daily Health Tracker here
HEALTH TRACKER | The Healthy Celiac (belindawhelan.com)
And I would love to connect with you on Instagram thehealthyceliac
If you have a spare moment, please pop over to Apple Podcasts and leave me a review. Thank you!
Music Credit bensound.com
All right, welcome back to this week's episode of the Healthy Celiac Podcast. I'm very excited today because I have a guest on the show and I'd like to introduce to Alex Mangano, who was diagnosed with Celiac disease at the age of 13. She's going to share with us a little bit about her journey and how that's led her to not only write her own beautiful children's book but also create a new three-part series called Giggle and Learn. So welcome to the show, alex. It's so great to have you on today. Thank you for being here.
Speaker 2:Thank you. Thank you for having me. I'm very excited to be here. Yeah, you're welcome.
Speaker 1:So yeah, if you could share with us first up a little bit about your journey. You know, getting diagnosed at 13, that must have been such a hard age, being a teenager and navigating this new lifestyle. So tell us a little bit about your journey with that.
Speaker 2:Yeah, I grew up as a relatively healthy kid. I just had the usual chicken pox, all of that kind of stuff happen, but there was never anything major, apart from when I was born and there was some technicalities there. But yeah, my whole family had this cold and I just couldn't get rid of it. I was super fatigued. I didn't really know that it was fatigued at that point. I missed out on like a week of school and I didn't feel like I had a cold, I was just tired and I never missed out on school, but I didn't really want to go, I just wanted to stay home and just rest. And then at that point mum was working from home quite a bit and there would be times that she'd have friends come over for yeah, friends come over for like a coffee, or we'd go over there to like their places. And three of her friends mentioned how pale I was and we all felt awful that we hadn't recognised that.
Speaker 2:But when you live with someone 24 seven. You don't realise those subtle changes.
Speaker 1:Yes.
Speaker 2:Yes, but these. Then the mum's third friend was like she's really pale. I think it just doesn't look right. I was like, okay, right, we'll go to IGP, we'll have a chat, everything will be fine, whatever. Because I was still functioning, I was still sort of doing things. I was just spending more time at home than I usually would. So we went to our GP. I walked in and it wasn't our regular GP, it was somebody else and he looked at me and he was like you look so pale. I don't know, I don't know how you're walking, how you're moving around. And it was weird because I was moving around fine. We were like, okay, that's, that's a weird thing to say to somebody.
Speaker 1:But yeah okay.
Speaker 2:They had one of the most painful blood tests that I've ever had because there was no nutrient in my body.
Speaker 2:That was had, not enough liquid, all of that stuff. So that was really hard. And then we went home and they were like, all right, we'll call you, you know, maybe in a couple of days let you know how it all goes. And then I'm sitting on the couch doing homework that my brother brought home school for me to do, Because even when you're sick you've got to stick with your education. Exactly, it's very important.
Speaker 2:And mum gets a call from a different GP saying can you bring her back straight away? The bloods aren't good. I was like, okay, sure. I mean, do we have to come right right now? And they're like, yeah, you need to come right now. So we went back. So it's other GP basically said the same thing. He's like blood care is not good I don't remember the stats because it was so long ago but basically there's like no nutrients in your body, all of this stuff. You have to go straight to emergency at John Hunter Children's Hospital and they're going to be waiting for you and then they're going to give you a blood transfusion. And mum's like, okay, right, we'll do the first steps. We'll go to emergency, We'll see the doctors and then we'll talk about the blood transfusion.
Speaker 1:Yeah, wow, so we went there.
Speaker 2:They were waiting for me. They were throwing around all these scary things that as a 13 year old, I could not understand. Like it's so soon they're going, I have no idea what's happening. Yeah, Didn't end up getting a blood transfusion because mom's main point was she's sitting up in bed. It mustn't be that bad.
Speaker 1:like she can hold herself up, she can walk around she can function.
Speaker 2:So then I was admitted into hospital for a week, which was the first time that I think I had set foot in hospital Wow, and I don't even know the last time that I would have been there, maybe for, like, I fell over when I was a little whacked the back of my head and we had to go into hospital. But it was super quick. So I had no memories of the hospital. We were super lucky that a few years earlier we moved to a house which is five minutes from the hospital, so we were super close it was just one of those like life moments where it was like, okay, right, this was always going to happen.
Speaker 2:We're super close, so was in hospital for a week and fortunately I have very fond memories of the hospital, like my my pediatric specialist is. I still have contact with him. He helps me with Jack Celia and all that stuff, so I have such a positive experience of the hospital Like I go hang out there all the time.
Speaker 1:Yeah, oh, that's so nice yeah.
Speaker 2:Just such a nice relationship to have with such a relatively scary place, definitely. But within the week I got diagnosed with celiac disease, got diagnosed with IBD inflammatory bound disease, ulcerative colitis and then a possible liver disease which they weren't sure what it was at that point. Got diagnosed with yeah Thanks, or do you mean her batitis a little bit later and then re-diagnosed a few years ago to primary sclerosis and colonitis. So it's been a journey.
Speaker 1:Wow, that's a lot to be thrown at you at the age of 13, isn't it?
Speaker 2:Wow, it is a lot. It's massive and looking back I'm like man, that was a lot to go through. Yeah, we have enough going on as teenagers.
Speaker 1:Yes, all this stuff, absolutely. I have a 16 year old, so I can't even imagine what life would be like if she was diagnosed with Celiac disease, because life is manic enough with her life. But, yeah, that is definitely a lot to be thrown at a 13 year old, and your mum as well, to cope with as well.
Speaker 2:Definitely. And I think, like I mean, my parents are incredible. Whenever I mentioned my parents to any of my friends, they're like, oh, your parents are the best. And I'm like, yeah, you're right, they are, they're pretty cool. Which?
Speaker 1:is so amazing and I truly believe that when a child gets diagnosed with Celiac disease, their parents are their biggest advocate. Their parents are the ones that help them and help them on their journey and make sure that they're doing all the right things and get all that education. So if you've got parents that do that for you, then that is incredible. So, yes, I agree, you are very lucky.
Speaker 2:Definitely, and I think, like because there's a lot of times when you're seriously unwell but you can't, you can't advocate for yourself because you've got brain fog, you stomach hurts, like there's so much going on to be able to have people where the amount of times that we've gone in to see my specialist, even as an adult mum, still comes with me sometimes when I'm not well, because she's like you're not gonna, you're not gonna tell her.
Speaker 2:She's gonna ask how are you going? You're like, yeah, I'm fine. The mum's like well, remember this, this this this this because you need. You need that community around you, and it's so many different aspects, from family to friends to work to all of those things Having those people around you to advocate for you and to support you and to try and understand and all of that stuff is, yeah, you're so right.
Speaker 1:So in the lead up to those people saying to you you look so pale and you know how are you, how are you standing, how are you functioning? What other symptoms do you remember? Do you like have much recollection of how else you were feeling, or was it just more like a rundown kind of fatigued type of feeling?
Speaker 2:Yeah, it was just. I don't remember a lot, but yeah it was just fatigue, really had a cold and then just really tired and no motivation. I've always been very, a very motivated person to do things and you know, show up to school and do all that stuff. And even now I have to be like unwell, to not show up for work, but I love my work and I love what I do so.
Speaker 2:It's you know it's worth that, but I can't really remember. It was quite quick for me and I know lots of people who are diagnosed with celiac disease. It's. It can be a long process. Yeah, of not feeling well and I just haven't had that, which I'm so grateful for. I didn't have the experience with celiac disease, yeah, so it was just tired and then going oh okay, I can't eat gluten anymore, but lint chocolate is the best. Yeah, and that was a grieving process.
Speaker 1:I'm sure you found a replacement, have you?
Speaker 2:Yeah, yeah, I just very much turned from a milk lint chocolate girl to like a dark chocolate.
Speaker 1:Okay, it's better for you anyway.
Speaker 2:It's better for you. I feel more grown up any time I eat it.
Speaker 1:Yeah, that's good. So how did living with celiac disease kind of lead you down the path of what it has with your book and your new videos and what you do advocating for children with celiac disease? So share with us about that.
Speaker 2:Yeah, when I was growing up, being a teenager, and even throughout uni, I didn't want to make art about my diseases. I wanted to, like, even throughout uni, looking back and like, oh, I could have made so many cool things on this assignment. I just do something completely different. But I think I just got to a point where I created Jack the character. It was originally just for an assignment at uni. Actually that's where it first started in my final year, where I was like, okay, maybe I should work with this health thing and visit him and buy us something, and I kind of just made him and I just fell in love with him.
Speaker 2:He was perfect on the first go and I know for me, whenever I'm writing music or something, when I make something and it happens really quickly, I'm like, okay, this means something, you get a bit of an attachment.
Speaker 1:Yeah, okay.
Speaker 2:So I sort of made him and wrote the book throughout 2020. I knew that's what I wanted my project to be for that year, and I just knew that there wasn't anything like this out there for kids, because I didn't have that.
Speaker 1:Yeah.
Speaker 2:I didn't have anyone to look up to in the chronic illness world until I was maybe like 20, 21. Okay, and it was a girl overseas who has a completely different chronic illness. But just being able to hear her tell her story and inspire and I was like, oh, that's really cool.
Speaker 2:I kind of wish I had this as the 13 year old I wish I had this, as I could look out and see somebody out there, even if they're a character doing have what I have, but be doing stuff, to be being themselves and embracing it. Yeah. So I wrote the book with that in mind of how can kids with celiac disease embrace themselves and live a full life, which is what I have experienced.
Speaker 2:They've always been told by the people who mean the most to me you can do anything. You can achieve your dreams. You can do this. It's going to be a little bit different because you live with chronic fatigue and brain fog and all of this stuff, but you can do it. We will find a way my parents always said to me that it was. We want you to get to a point where you're achieving what you want and you don't look back at us and go. Why didn't you support?
Speaker 1:me in this and that so which is so good.
Speaker 2:That's why I'm able to do what I'm doing with Jack, is because of that support. And I want to translate that to kids. When they're first diagnosed they can see Jack out there having fun being his full self, but then, through the book, see how he got there. Like it wasn't easy. He got diagnosed, he was sad, his food didn't taste very good and he had to go out on this big adventure to find all of this food. And then he was like, okay, I can get back to being myself because it's actually achievable. Yeah, and that's kind of why I'm doing it and where it kind of all started. And then slowly it's just snowballed a little bit from one thing to the next and seeing you know where we can take Jack, and often to the future and all that stuff.
Speaker 1:Yeah, and you've got a few other projects up your sleeve, I believe, talking about other issues and helping people in other areas. Is that correct?
Speaker 2:Definitely so. Jack is just the start of Jack the Ciliac. Eventually, hopefully, it'll be Jack the Ciliac and Friends.
Speaker 2:I already have a character and she's kind of ready to go we're just finding the right moment to launch her and see how much we can do with Jack and talk about Jack and get him out there before we introduce a new character, and focusing on my illnesses first, because that's what I know the most about. No-transcript, exactly, but the end goal is to have a character to represent any chronic illness that an Aussie kid lives with. So they can have someone to connect with and be inspired. By. Represented by.
Speaker 1:Yep, fantastic. And so share with us a little bit about Giggle and Learn as well.
Speaker 2:Yes, giggle and Learn, it's launched. It's out there in the world. I have a background in media productions, worcester Buddylett University. I've always been drawn to creating content that can be accessed anywhere and anytime for anybody. And with what Jack stands for, it's what people in any community, as long as they have access to like a computer, somewhere that they can, you know, get to know Jack. So, yeah, so, giggle and Learn.
Speaker 2:The idea was born, like probably around this time last year, to create this online program, which consists of three episodes focusing on a few of the many aspects of what living with chronic illness, living with celiac diseases, all about, and to also have some activities that these kids and families can just download at home and use at home to learn and play with and to help these kids have to go out and about. They can look up the places that they like to go. They can have their snack pack ready to go. So when they can't find somewhere, they have that, you know. They know what treats they can have just in their car that they can, you know, pull out. I know I have that. I have stash of snacks constantly.
Speaker 1:Yes, it's a must.
Speaker 2:It's a must. It's also great when you're just like driving home from work and you're like I just need a snack. Look, I'm ready to go. I love snacking, so that's what it was all about just getting the content that I've done in shows before and putting it right in front of people's faces. You can just enjoy it whenever they want.
Speaker 1:Love it so great. So where can people find that? If they want to watch that, is it best just to go to your website or YouTube?
Speaker 2:Yeah, head to my website, so jackthesilliaccom, and then forward slash, giggle and learn. That's where you can go straight to the giggle and learn page. It's best to go there because then you've got access to all of the downloadable activities, which are all free for you to just have and learn and have some fun and follow and create, do whatever you like with those pieces of paper.
Speaker 1:I love your little memory cards that are on there. They are fantastic. They are yeah, I love them Very cute. Yeah, they're great.
Speaker 2:I had a friend of mine send it over to her granddaughter overseas, over in Scotland, and she was like it was so because her granddaughter has celiac disease. And she was like it's so great because they kind of opened up a conversation around gluten-free food. What it is what isn't, and things like that, which is so cool.
Speaker 1:It's just a game of matching can open up a conversation like that. Yeah, it's perfect. It would probably be great for kids to take to school as well as a conversation started with their friends to help them get more of an understanding of what gluten is and where it works and that type of thing as well, so I love that.
Speaker 2:Definitely, and I think, like I've always learned the best when I'm being creative and I'm having fun, and I know from my work with kids they're exactly the same, but if they're having fun, they're gonna consume this information a lot better. So that's the goal. This is like you're having fun, but you're also learning.
Speaker 1:You don't know that until one day you're like.
Speaker 2:I know this information.
Speaker 1:Clever. I love it. I'll pop a link in the show notes so that people can find that as well, because, yeah, it's fantastic and it's so helpful for little kids to learn and to be able to be inspired as well. So thank you so much for sharing that with us. What would be your best tip for a newly diagnosed child with celiac disease moving forward?
Speaker 2:I think the best tip is to go out and look, and for parents as well, just head out to your local food store Woolworths, whatever it is, IGA, whatever and just have a look at what's there. Get reading labels, get used to seeing the gluten-free on packaging. We're so lucky in Australia Everything's labeled really well.
Speaker 2:We are you know if it's gluten-free, you know if it's not. Like it's getting a lot easier to read that stuff. So that's probably my big tip it's just get out there. Get out there, adventure out, try stuff. There's some really amazing stuff out there. There's some stuff out there that is getting there, yes, but I think, like I think that's yeah, just get out there. You'll find things that really work for you. You'll find places in your town that you know you can trust to go there and it doesn't have to be super scary because there's so much out there nowadays. If your diagnosed now is a celiac, you've got so many options and opportunities Absolutely so much easier.
Speaker 1:Definitely yeah.
Speaker 2:So much easier. So, yeah, I think, don't worry, and, like Deirdre says in episode one, don't stress, don't stress.
Speaker 1:Yeah, it's true, isn't it? There's always going to be an answer and a solution to those problems, and it's just going out there and learning and getting more information, so that's very, very helpful for sure. Okay, before we end the episode, can you also just share where people can purchase your book if they'd like to buy a copy of it, and also if you want to drop your Instagram details if people would like to go and follow you there? That would be amazing.
Speaker 2:Definitely. You can get my book also from my website, jackthecilliaccom. That's where it's available online to purchase. If you live in Newcastle, it's in a few stores around here as well.
Speaker 1:Excellent.
Speaker 2:Website definitely the place to hit up. And then social media JackTheCilliac, that's my handle on Instagram, on Facebook and YouTube as well. So you can go check out everything we're up to posting lots of fun content coming up. We're very excited for what I've got planned for Instagram for the next couple of months. So, definitely come hang out, have some fun. Perfect.
Speaker 1:And for our international listeners. Can they also purchase your book just from your website? You ship internationally as well.
Speaker 2:They can yep perfect, I do yep, yep, so just jump on, and then we'll ship it on over to you Beautiful, all right.
Speaker 1:well, thank you so much for your time today, alex. It's been wonderful to talk with you and share this with you and learn from you, and, yeah, it's been amazing. So, thank you so much for your time and I hope you get lots of people heading to Giggle and Learn and learning more from you. So thanks again.
Speaker 2:Thanks so much for having me and, yeah, we'll see you all on the website. Have some fun, giggle, learn, be silly that's what we're all about. Perfect, take care.
