Simon: G’day guys, and welcome to another episode of The Mindful Men Podcast. I’m your host, Simon Rinne, and today we’re getting mindful about Coeliac disease and how what we put in our bodies impacts our physical and our mental health.

Now, trigger warning today, because we are talking a little bit about mental health, if you do get triggered by these types of discussions, feel free to skip this episode. That’s more than okay, but if you do stick around and you do get triggered, please reach out to your support networks afterwards.

And joining me today, I’ve got Ben Hampton from New South Wales in the Southern Highlands. How you going, Ben?

Ben: Good. Simon and yourself?

Simon: I’m very well, mate. I’ve been looking forward to this episode for a very long time.

We’ve been chatting to and fro on the socials, and I’m really excited about this discussion because Coeliac disease has been something that’s come into my life through my extended family. More recently in the last one or two years. So, I’m interested to learn bit more about what it actually is but also hear about it from a guy’s perspective.

Cause I actually don’t know any guys with Coeliac disease, but, you’re a husband and a dad of two. You’re a Coeliac disease advocate and you are the host of a gluten-free podcast, which is an amazing podcast. I’ve heard it myself and, really excited to have you on the show.

So, thanks for coming on.

Ben: Thanks for having me, Simon. And I’m really interested to hear about your relationship with people in your family with Coeliac disease and it’s kind of something that I guess touches a lot of people and that’s what I’ve learned through having the diagnosis myself and speaking to so many in the community that have it.

So, any chance to spread awareness about the disease and chat about men’s mental health is, a win in my books for sure. So, Thanks for having me on.

Simon: Looking forward to this. Now, before we get into what Coeliac Disease is, I’d just like to hear a bit about you and your backstory so, where did you grow up?

 And a bit about family life and, some of the other stuff that you do with work, and also the podcast too.

Ben’s Background

Ben: for sure. So, I grew up in the southern Highlands was born and raised here., it’s a pretty niche sort of community.

It’s, a very small community, so everybody kind of knows each other and in each other’s pockets. But, I, grew up here and really loved it. Have a very loving and close family and had a great childhood was always into sports and music.

 I started finding gardening work actually, when I was sort of in my late teens and twenties and started up my own business doing that around the Southern Highlands, there’s so many gardens in the Highlands.

So, I’m never short of work around here and I’ve always found that a really nice job to have and I like being out in nature and, working with plants and sort of having a lot of time to reflect on stuff too, and listening to podcasts and a lot of music,

Simon: So, you as a gardener, how’s your grass? Because I do watch a little bit of lawn porn on the socials, how’s your front yard looking compared to the neighbours?

Ben: Well, we just sold our place actually. But I did try to keep the lawn looking pretty schmick I’m not actually a lawn person per se.

I’m more into the gardens. I just try to stay away from the lawns because, they can do their own thing and grow so much at certain times and it’s just so hard to keep on top of them, especially with all the rain we’ve had recently. But I’d always be doing the extra things and I guess neighbours were always looking at me weird when I’d be, coring and fertilizing and top dressing my lawn. But I’m sort of into the lawn porn as well, Simon. I do kind of nerd out on that and I love a good lush lawn, but I’m more into the gardens.

Simon: So, what’s in your garden?

Tell me some of your favourite plants that you’ve got.

Ben: Oh, look, there’s so many in the Highlands that I’m a big fan of the hydrangeas, the camelias all the, all those sort of cottage plants. I do a lot of hedging of Buxus so Japanese and English. And I really enjoy tapering plants as well, and sort of making them into different shapes.

That’s sort of my expertise, I guess you’d say. A lot of people get me, for hedging work, so I really enjoy just making everything sort of neat and tidy and, accentuating the plants and, giving them different sort of forms.

Simon: thinking back to school, what interested you in getting out in the garden, doing this kind of work?

It’s not usually the kind of trade that most young men go towards. They usually go to be chippy’s or, builders or something like that. So, why gardens? What was the draw to that?

Ben: To be honest, I have absolutely no idea. I think I just sort of fell into it. I was actually really obsessed with music in school.

I thought I was going to be a muso. I’m a drummer and so some people would argue with the term being a muso. But I was really always into the alternative bands and metal and alternative rock and I could talk your head off about nineties alternative rock all day. But it’s for another time, I guess.

But I always just kind of enjoyed music and I thought that that was going to be a pursuit of mine. And actually, in my late teens and early twenties, I really tried hard to do that. I pretty much put everything that I had into music, and went overseas for a period of time with a couple of bands and I thought that that was going to be the root. But unfortunately, it didn’t turn out that way. And I sort of saw the life that, musicians had and that they’re on the road a lot and that it was a pretty hard road to get to earning a living in the music world.

But I just sort of stumbled on gardening before I left for overseas for one of my bands. I was just doing some labouring for a company and pretty much just fell in love with it, Just, having that time outdoors and connecting in nature and just working with, a couple of mates outside and physical activity, exercising.

It just kind of ticked all the boxes for me. And, it still kind of does because I run my own gardening business now and I have time to spend with my family and to be able to do the podcast that I do and connect, with people in the community that I’m in.

And so, I’m really thankful for it in that way.

Simon: And, and so when did Family Life come into it? how old’s the kids? How did you meet your partner, juggling work and this muso career and, now gluten-free podcast as well. tell us a bit about the family and how they’ve supported you along the way.

Ben: for sure. So, I actually met my wife at high school and we always joke about it because we were sort of the high school sweetheart sort of story. We liked each other on and off and we were always with, someone else. We’d always have a boyfriend or girlfriend, at different times.

And we always liked each other in those periods where we both have a partner as it usually happens. But we connected, after school actually. It was actually when I came back from overseas after I was trying to do the music thing and we just caught up, one day and the spark was still there, and it has been there ever since really.

So now we have our eldest daughter just turned four. And our youngest is 18 months, my wife has just been an unbelievable support with everything that’s happened and the diagnosis, which I’m sure we’ll get to but honestly, and I say this on different podcasts and the last podcast I was on, the guy was just saying, she’s just standing at the door, right? you’re talking about her way too much. But seriously, I think because she had to put up with so much crap in the lead up to my diagnosis and even after my diagnosis, I’m a different person now and I think she can see that and she’s so supportive of everything that I do, but I honestly could not do any of it without her.

She’s been a huge, huge support.

Simon: Wow, that’s amazing. I had a very similar experience with, my wife and, stepping into the Mindful Men space and away from my old career, and all the heartache and mental turmoil that I was going through at that period as well for her to support me and help me I guess flourish into, this beast that’s called Mindful Men now, I’m really grateful for that, but I couldn’t have done it without her support as well. it was a real pivotal moment in my life is her support, and the way that she guided me through some of those dark periods, in the last couple years for me.

So, hats off to both our partners if they’re listening, so anyway, but before we get into your diagnosis, I’d love for you to just help us understand a bit about what Coeliac disease actually is.

I’m sure a lot of people have heard of it but might not fully understand it, and how does it impact our bodies?

What is Coeliac Disease?

Ben: For sure. for anybody who doesn’t know anything about Coeliac disease or you’ve sort of heard the term and something about gluten, don’t worry. I was exactly the same before my diagnosis.

I didn’t even know what gluten was. I thought it was a sugar. But Coeliac disease, it’s not an intolerance as a lot of people think it is, and it’s also not an allergy, and those things get mixed up. So having a gluten allergy or a gluten intolerance, it’s a chronic autoimmune disease.

And it’s when a person has Coeliac disease, when they ingest this protein, which is gluten and that’s found in barley rye, oats is a very contested thing within Australia and overseas as well. And wheat, which is what most people would associate gluten with when yes, someone with Coeliac disease ingests that protein.

It causes an immune response in us. And it damages these things called Vili, which are these finger-like projections that sit on the inside of the small intestine. And when they become blunted, then you can’t absorb all the nutrients that your body needs because our body absorbs so much nutrients from food.

And everything just sort of washes through. So, this is why you get lots of symptoms. There’s, around 200 to 300 symptoms. It’s crazy. But you start to get bloating and diarrhea, brain fog, constipation, joint pain, back pain., it can present in so many different symptoms and variations, but it can lead to anaemia.

Osteoporosis even some forms of cancers, it’s pretty nasty if it’s left untreated. And the only known treatment for it at the moment is to manage it on a strict lifelong adherence to a gluten-free diet, which is a very hard thing and getting used to the diet initially is a very hard thing, but the social and the mental toll that it takes on a person is probably the bigger thing.

That’s the bigger thing for me anyway. And I, know a lot of people that I speak to on my podcast about, the social and the psychological ramifications of everything that you have to deal with day to day. So, this can be anything from, a friend invites you out to dinner.

For us, that’s not a very relaxing thing, if you haven’t been to the place that involves getting onto the phone straight away, perhaps making a meal before you leave. And then once you get to the restaurant, you’ve already asked all those questions. You are second guessing everything. And you go into sort of a bit of a hyper vigilance sort of mode and, it takes its toll. And you’re sort of sitting there, wondering whether you are going to get poisoned., what our bodies, consider poison and have some really bad symptoms of, getting glutened.

But that’s sort of the things that are running through your head the entire time instead of just going out with a mate, having a wonderful time sitting down, having a meal, which is, a culturally and socially lovely thing that we do as humans. But I guess that being stripped away from, you or being made a hundred times harder to do is probably the biggest thing that I’ve found I’ve struggled with, but I’ve found some ways of dealing with that along the way,

Simon: I didn’t realize it was so detrimental to the body. In terms of, almost like poisoning as you, were noting there.

 You talked about the social element. I remember a few years ago there was a guy that I used to work with who would look for gluten-free beer. We think about guys and guys get together usually over a few beers, maybe they might go to the pub or, watch sport or, listen to music with some drinks.

, we’ve got a big drinking culture in Australia and how did that impact you?

Drinking and Coeliacs disease

Simon: I found drinking pretty young, to be honest. And that started, with parties at school and stuff. And it’s always been a way for me to sort of connect with others and I definitely know I’m not alone in that when I’ve spoken to others about this, I think it sort of breaks down those barriers and you’re able to socialize and you don’t feel as awkward and it takes away your inhibitions and that sort of thing.

Ben: But drinking has always been a huge part of basically everything I’ve done. All the socialization that I’ve done over the years, even in my teens, but going into my twenties it was a huge part. And being in a band as well, it was just part of it, basically, drinking and drugs was, just kind of what you sort of partook in just living that sort of lifestyle. It just went hand in hand. But since the Coeliac diagnosis, I actually only drank for a period of a little bit, and I’ve actually cut out drinking from my life entirely now. Not that I had a problem with it or anything like that.

I just feel way healthier and just, having two kids now, it just doesn’t suit the lifestyle. I just don’t go out and drink anymore. And, I just found that drinking at home just actually led me into a pretty bad state of mind at, different stages of my life. And just never did anything good for me, physically or mentally.

And, I found out that I can socialize and have a great life and meet friends and do all that sort of stuff without alcohol. And, it has been a, really big shift. Even with friends who I’ve caught up with recently and, go out, they’ll be going out for a beer and I’ll just grab, a soft drink or something, and they just, quiz me on it, different friends, who don’t know about it.

And it’s, sort of a double whammy because they say, oh, is that part of your Having Coeliac disease, you can’t drink alcohol. It’s like, no. Well, you can actually drink a lot of different alcohols. You can drink nearly every spirit. even whiskeys and rums and that sort of stuff because they’re distilled down to a level that it just deletes the gluten straight out of there.

But beers, you can’t have regular beers with barley in there. So, there are heaps of gluten-free beers out there now, and some that I was having beforehand are fantastic. There’s a brand called Two Bays, and they’re by far, the best gluten-free beer that I tasted before I pretty much cut out drinking, but I’ll be having him on the podcast at some stage, to chat about it.

He’s, got Coeliac disease himself. And he thought, you know, always a beer lover and had different breweries and stuff and found out he had Coeliac disease, was absolutely gutted. Pun intended. And, just had to make some gluten-free beer brands. So, look, I, think It’s sort of a conversation starter a bit as well, and I’m totally open to, telling people about that too.

It physically and mentally was not making me feel well, and I have nothing against anybody drinking these days if you want to go out and get drunk or if you, just have a couple of beers on the weekend or just socialize with it. I am, not to judge on anybody because I have done my serious amount of drinking throughout the years.

But it just doesn’t Suit me anymore. I would rather just go out and have a coffee with someone or just, have a soft drink or whatever and sort of still be in the here and now and be able to drive off without having to worry about the alcohol in my system and all that sort of stuff.

 What about food? has there been any particular foods that are worse than others? and does it vary between different people with Coeliac disease? you might be able to eat certain types of, bread, for example, but another person really can’t eat that.

Simon: does it vary like that or does it vary consistent between person to person?

Ben: So, if you have Coeliac disease, a lot of people get confused with this. There are different levels of symptoms, so you present with different, various symptoms. But if you have Coeliac disease and you have that autoimmune response, you’ve been diagnosed.

And I should probably explain as well through a diagnosis. You have to be eating gluten to get the blood test to show the antibody levels, and then they send you for an endoscopy and you have to be consuming gluten throughout that period to get the endoscopy to show the damage to the Vili. Then they confirm that you have Coeliac disease and you go on a strict gluten-free diet.

After that, a lot of people just go gluten-free beforehand and don’t find out if they actually have Coeliac disease, which is a huge portion of people, and I totally understand people doing that. Because I did the same thing before I actually found out the, traditional route to go down to get that gold standard of diagnosis.

But getting back to your question, there’s various levels of symptoms that people present with, and they can be totally varied, so someone like me who presents with a heap of symptoms and someone who can be actually asymptomatic, so you can be going through your life consuming gluten, have Coeliac disease, be doing just the bad amount of damage as someone who is presenting with very, very bad symptoms, and it’s the same.

It’s exactly the same. So, you are doing that same amount of damage to your body, even a crumb of gluten versus having a whole slice of bread. Yes, you’ll present in different symptoms and it’ll take a little bit longer to get out of your body, but once that immune activation is there,

The switch is just flicked. And that autoimmune reaction will happen. And if that’s done on a consistent basis, then you’ll still be at risk for all those health issues down the track. But having a kind of a one-off, we call it a glutening if you get gluten ed in the coeliac and gluten-free community, when you ingest gluten unknowingly.

That’s not going to lead to a lot of different, problems with health. In the longer term, you’ll just present with symptoms and, if you stay strictly gluten-free and you don’t have any more glutenings down the track, then that’s good. But if you’re having that on an ongoing basis, it’s going to lead to some really long term

Problems with your health.

Simon: So, at what point in life did you start to feel like something wasn’t quite right? And did you identify that it was something to do with gluten or what did you think it was initially? Can you walk us through that? And then what led you to look into Coeliac as a potential issue for you?

Discovering Coeliac Disease

Ben: so, it was basically just by chance. Looking back, I should have been tested for Coeliac disease when I was a kid. I had a lot of time off school. I was always on antibiotics for different. health issues and sicknesses and I’d always catch the first thing going around at school as well.

And I had so many stomach aches and viruses and tonsillitis and, different ear aches and stuff, and I’d always just be pumped with antibiotics during those times. And I’d be off school so much. And I thought my friends, sort of went through the same sort of thing.

But I remember chatting to a friend in high school about this and my wife later on as well, and sort of saying, I’d have maybe a month, six weeks off school with, sicknesses a year. And they’d be like, what? I really don’t think that’s normal unless you’re a toddler or you’re a kid and you’re, going through those early stages of, daycare and preschool and that sort of thing.

So, your immune system should be sort of be able to handle a bit more. But I just thought that was normal to, just go through life like that and just be sick all the time. And I can remember probably I was about 19 or 20 and I just had sickness after sick sickness.

And I swear I was sick for two or three months straight, just with different lingering symptoms and colds and flus and tonsillitis and ear infections and chest infections, and one thing would just lead onto the other. But it was always kind of put down to I was drinking too much in these bands, living in unhealthy lifestyle, not eating right.

Which was all right as well. That was all correct. But at the same time, I did present with GI symptoms to a lot of brain fog, constantly not being able to think correctly. I was a bit of a mess for a fair period there. And presented with a lot of different mental health issues as well throughout the years.

Which I sort of sought help for, in the mental health field, but I guess the gut and mind connection are now something that’s really, really new and we’re only just discovering that. And I think that’s something that needs to be explored a lot further. And I’ll hopefully be covering a fair bit of that as well.

And, it’s a really interesting field, there’s so much science uncovering in that field at the moment that it is so connected. But the thing that really set it off was when my daughter caught a gastro bug at the beginning of 2020. And initially looking back, it was actually really strange because there was this thing called covid going around at the beginning of 2020, and I saw this in the news and I was thinking, oh, could it be this COVID thing? And you couldn’t get a test back then in Australia. It was so hard to go and get the P C R test and I thought, oh, maybe I should go to my doctor and sort of see if I have this COVID thing or the coronavirus, as they were calling it at that stage, because some people did present with, diarrhea and constipation and these different GI issues, and that’s what I was having.

But, my wife and daughter, they recovered from this gastro bug pretty quickly, but I just kept on having these ongoing symptoms. I get just really bad bloating and diarrhea for weeks and weeks on end. And this led into months and I started losing weight. Pretty badly, like shedding it.

And I wasn’t doing, any other type of diet or doing any other exercise that I’d normally do. And I was just dropping weight like crazy. And then I started getting all these joint pains and back pains, and my mind was just so foggy, to the point where I just could not focus on anything whatsoever.

And to do any sort of task that demanded, a little bit or a lot of effort was just too much for me. And then I started getting just into a dark hole with everything. I kept on going back to my GP and different health professionals at this stage. And the answer was that you’re just going through this gastro bug.

 your health is just trying to improve itself. Just give it time., but I’d say, I think it’s related to something with my diet and I’m dropping all this weight, like, what is going on? Like nothing’s getting through. and they just say, no, just keep on the diet, you’re on. Take some probiotics and just, try to be a bit healthier. you got a new bub, so you’re probably stressed out in that way. The covid is around as well, so that’s a stress as well. and I kept on going back to my GP because I was just like, no, you know what, something is not right. You’ve got to tell me what’s going on. I want to get tested for this. I think something is seriously wrong. And I honestly did deep down think that I had cancer. I thought that I had some sort of, stomach cancer or something. But I just wasn’t getting an answer.

And this went on until the end of 2020. And probably around, I think it was around October, my wife’s friend actually was diagnosed with Coeliac disease the year before in 2019. And she said, I think you should ask your doctor for this test. So, I said, okay, I’ll go and ask.

And I asked and they said, okay., I guess we could test for that. We’ve tested for everything else, everything else seems to be okay. And she said, well, actually you do have slight markers on your liver, which is sometimes an indicator that you could have Coeliac disease, so we’ll go and check it.

And so, I went and got this blood test, not thinking anything of it. And I was actually gluten-free before I went to get the test and I put off getting this test because I thought, I don’t know what this disease is. It sounds too weird. It sounds like this really rare thing. I don’t have it. and I had actually gone gluten-free just by chance without knowing what gluten was.

I made a food diary because I was that desperate. By this stage I was thinking, breads pastas ice creams, beer. I found that they always gave me really bad bloating and all these symptoms I was presenting with. So, I thought maybe I should just cut those out and see how I feel. And I was feeling pretty good.

And then we had a party that we went to around that time and I was eating breads and I ice creams and beers and stuff and I felt so bad the next day. So, I thought, I’m just going to go get the test today. I’m going to go for the blood test because I feel like I’m on death’s door I was feeling so bad.

Getting the diagnosis

Ben: Went and got the test. And the doctor pretty much just rang, two days later and was like, you need to come in. And so, I was like, oh no. they’re going to gimme this news that I’ve got cancer or something. Something’s really bad. I totally forgot that I had the, the blood test for Coeliac and sat down and they were like, you are severely Coeliac.

 your numbers are actually, I can’t read them. They’re, off the charts, literally. And so, I said what does that mean? what’s this disease? And so, they just, talked me through it and they said that you need to go on a gluten challenge and book in for an endoscopy. And at this point, this was during, I’m pretty sure this was near another covid lockdown, so it was so hard to book in for the endoscopy.

But you need to be on gluten that entire time to have the confirmation of Coeliac disease. So, I had to do it for about six weeks. And those six weeks, Simon. Oh, it was so incredibly hard. I got into a really, dark place having to do that. But knowing that there was an answer to what I was going through kind of made it that bit more bearable.

But having to do that gluten challenge was incredibly tough, and I hope that there’s some sort of other way of doing it in the future and people are working on it at the moment, but it is really rough having to ingest poison into your body to then find out that you have what they are, 99% sure that you have anyway, and then going gluten-free.

But once I went gluten-free everything pretty much has lifted in a couple of days. I found out that I had some other i b s and lactose intolerance, which often go hand in hand with Coeliac. But on the whole things just improved so much.

Simon: I know someone, about to go through that challenge, and they’re devastated that they’ve got to ingest some gluten, but also, they’re worried about what’s going to happen over that period as well. How did, that impact work and family life while you’re going through the challenge

Ben: in every way. To be honest I was a mess. I was an absolute mess.

My wife took the load of pretty much everything and I still can’t stand that to this day. when my wife is having to take the load with everything and, look after the kids and, I’m sick in bed. I just can’t stand that. I just want to be in there helping and, she helps me so much.

But I was just a mess. And, mentally and physically, I would show up to work. And I remember one of the last days of my gluten challenge and one of my clients looked at me and was like, go home. You look really bad. And I did. I went home and I looked in the mirror.

And my wife and daughters were out at this stage, And I looked in the mirror and I was like, whoa, who are you? I can’t see Ben anymore. you’re a different person. my face was really, really gone. And, just pale as anything. And I’ve got pictures up on my Instagram of a before and after, just after, a couple of months or I think it was actually a year later, after on the gluten-free diet.

And there’s just a huge difference. But I just I looked horrible. Just a shell of my former self really. And it was, it was super, super difficult to be on that gluten challenge throughout that period. And I went on a lot longer than most people do. So, I think it’s actually two weeks that you need to be on a gluten challenge at least and you’re supposed to have four slices of wheat bread or the equivalent of that in gluten a day to get the accurate results. I might have to fact check that and give you the, link to Coeliac Australia’s advice on that one. But I was an absolute mess.

, it was super hard. And I was just doing everything and anything to get through that. I sort of took a bit more time off work. My, GP actually told me, look, you’re going to have to take, a couple of months off work. And I said, I can’t do that. we have a mortgage, we have kids. I’ve got to show up to work. even if I’m doing a reduced workload or something, I still have to show up. And this was in the lead up to Christmas as well. So, it’s my busiest time of year and I only work, by myself. So, Look, the clients who understood what I was going through, I still have but it was a really tough period, but I really did rely on our family helping out with our bub that we had at that stage, our little first girl. And my wife just doing a massive amount taking on everything around the house and with our daughter and I wasn’t much help, but once I went gluten free, that all changed.

Simon: So how did that change in your pantry, in your fridge? did you do a total clear out and start again, and how do you manage that as an ongoing thing now?

Making the change to Gluten Free

Ben: so actually, when I got my positive blood tests, my wife and I researched the absolute crap out of Coeliac disease and found out, even that may contain labels of gluten, you can’t eat that and anything, with wheat, barley, rye, even oats, we stay away from oats because you need to do an oats challenge in Australia. If you have Coeliac disease to make sure that you can have gluten-free oats. But we just went through the entire pantry and we pretty much threw out probably half to two thirds of what we had.

 And then, pretty much just started from scratch and my wife and I made the decisions because I was actually getting into sort of cooking and baking around this time as well with, COVID and I’ve always kind of been interested in food, but I’ve never taken that leap to actually give it a go.

I thought it was, I was always a bit of a bachelor cooker. Just have a few, barbecues and spag bowls and that was my specialty. But the Coeliac diagnosis really put to the forefront that I’ve got to start cooking and baking at home that’s just essential now no matter what.

And so, we basically made the decision to go nearly a hundred percent gluten-free in the house, minus a little pantry of gluten containing products. So, my wife and my girls still have weet bix and, porridges and different types of wheat bars and that sort of stuff, and crackers, and that’s all just in a little cupboard separated.

 For the reason, because my wife and I cook and bake so much gluten-free now we take the load and try to halve it. My wife’s been doing a bit more of it lately. But we try to, to really share that load and, I love it now. I actually love cooking and baking, which is not something that I ever thought I would say.

But I, really enjoy it, just getting in the kitchen and making different sorts of recipes. And I’m chatting to the people on my podcast as well and on my Instagram page that are, the cookbook authors and the recipe developers, which is awesome. So, I say, oh, this dish worked out, or I did this to it and substituted this and it didn’t really work out.

And they’re like, that’s the one thing I’ve learned with gluten-free recipes. You have to stick to the recipe. If you change any little thing, it can change the entire dish and just crumble and fall apart. So that’s definitely something I’ve learned. But it’s been a whole different learning curve, even to get a new toaster because, bread can be contaminated in the same gluten containing toaster if you put gluten-free bread in there. And making sure that you don’t even have, gluten containing products in the same area in an oven as the other gluten-free products and, wiping down benches and , there’s a whole bunch of, different stuff and different utensils and things can soak up the gluten, like in wooden spoons and, scratches and pans, and it’s a whole thing and learning about that and Has been sort of a trial and error sort of process and speaking to different people to get different tips and their mistakes as well.

The mistakes that they’ve made in getting glutened and getting sick, they don’t want anybody else to go through that. So, I want to try and put out that information to everybody as well. And just give those tips and advice. because I think that, you can be diagnosed with this disease and there’s still so little information that is given out once you get a diagnosis.

My gastroenterologist rang me and was like, hey, yeah, you got Coeliac. Go gluten free for the rest of your life. See you later. And there’s no follow up. That’s it. And it’s pretty much just look out for yourself after that. And so, you find so many families and different people going on to Facebook groups and, support groups to ask so many questions.

And granted as well because there’s just not enough information out there. But Coeliac Australia is a fantastic resource for people too. They’re a non-for-profit organization that look after Coeliac disease in Australia. And I’d highly recommend if anybody’s going through that diagnosis process.

Your a family member there. I would encourage them to go check them out, even if they don’t get a Coeliac diagnosis after the endoscopy, just to know what Coeliac disease is, if you have non Coeliac gluten sensitivity as well, they’re still a fantastic resource. And just to be connected with the gluten-free community and, be able to connect with them is a massive help.

Simon: I love that you brought up community. So, when I was diagnosed with obsessive compulsive disorder, I did the usual go to therapy but that was the extent of my knowledge about O C D until I started Mindful Men as an Instagram page a few years ago, and I started connecting with people on Instagram who live with O C D as well, and therapists who specialize in ocd.

So, then I started learning a lot more about what O C D is very similar to what it sounds like, what you’re doing with the Coeliac disease. How valuable has the social media spaces been for creating a sense of community around yourself to learn more about the, disease, but also, helping others as well in their, journeys?

Finding the Gluten Free Community on social media

Simon:

Ben: massive. Starting up the Instagram page, it was just sort of something I did in lockdown and I thought, I want to just connect with other people because I couldn’t go out into our local community or anywhere in New South Wales. At that stage, we were all in lockdown. So, I was like, what do I do?

 And my wife said, start up an Instagram page. And honestly, it was one of the best things I ever did because I connected straight away. People started following me, I followed them.

We started chatting. What was your diagnosis what’s the different rules and regulations around gluten-free food there in your, country? And it was just this whole new world of whoa, these people are so nice. They’re just, they’re sending me these dms, which are pages long of here’s my diagnosis story.

Here’s what to look out for when you go to cafes and the different, restaurants and questions to ask and here’s some people you should follow too. And I was just like, wow, thank you so much. This is, awesome. And then I started putting up a little bit about our family and what I hope to achieve with the Instagram page, and then it just sort of snowballed from there.

And I just started speaking to all these different people, and the same sort of things kept on coming up the same stories. And I found that they were all really similar. But a little bit different in their own little way. depending on where they were diagnosed, what sort of stage of life they were diagnosed at their different life circumstances, so many variables at play.

And it, just made me realize, wow, this needs to be talked about. And then I found a few different podcasts about people talking about it. And found a bit of a gap that there’s not many guys, talking about this sort of stuff. And I thought maybe I should just do it. And my wife was like, do you know what, I think you should absolutely start up a podcast, start being open about it. Get out there and start writing for different platforms and stuff. And I guess I felt really vulnerable doing that and showing up and talking about men’s mental and physical health, especially because I’m a big advocate for guys coming forward and getting tested for this disease.

They say that one in 70 people are estimated to have coeliac in Australia, but 80% are going undiagnosed. And apparently 80% of women usually have autoimmune diseases. But I really, really wonder whether that’s because guys are just so hesitant to come forward for testing in any case, with either mental or physical health.

 the, Instagram page was just a huge help and it still is, so many people show up after they’ve been glutened or they’ve had a really tough week, or they’re just sharing something on their stories or on their posts and just saying, look, I went out to this restaurant, usually trusted, or it was to be deemed to be trusted.

And they made me sick and it sucks. I did an episode on this recently actually you started having these trust issues with places that you go out to eat at, even with friends and family, that is probably the most awkward thing when friends or family are like, hey, I researched about coeliac disease and the gluten-free diet, and made you this and this and this.

It’s like, thanks so much. Now I have to ask you this whole script of questions like, did you watch out for cross-contamination? Was there no may contain labels? Did you put it in, a separated area in the oven? Like all these different questions and you feel so hesitant to say, I’m sorry I just, I don’t trust what you’ve made. that is a super awkward conversation to have. And I’m still learning how to get around that and deal with that. And there’s just a whole bunch of different scenarios that come into play that someone wouldn’t really associate with, being gluten-free, because that’s really all it’s classed as usually is just, someone has Coeliac disease, oh, they’re gluten-free.

It’s just a gluten-free diet. That’s just the start of it.

Simon: Well, on that, there’s a, trend going around and it has been for a little while around people just choosing to go gluten free. And, I’ve seen some responses back from health professionals saying, well, there’s actually no, medical reason for that.

And in fact, gluten’s good for you unless you’ve got something Coeliacs disease. I’d love to hear your thoughts about this and what have you seen, what do you believe? what’s some of the stuff that you talk about in your circles about this kind of trend?

Ben: so, there’s been a lot of misinformation and I think that that’s come from certain celebrities out there that have sort of put the gluten-free diet, I think it was around 2010 ish to 2013 to 14. It was the most Googled diet one of the most Googled topics, I think at one stage People were just so interested by the gluten-free diet and it became a fad. it just sort of snowballed from there and people thought that you could just go gluten-free.

It was just a diet; it was just a fad diet not knowing about Coeliac disease and that people with Coeliac disease. The only known treatment, is a strict lifelong adherence to a gluten-free diet. And it sorts of made it this, thing to poke fun at, oh, your gluten-free. it’s just this fad thing that, that everybody’s going through.

And I’ve spoken to people who were diagnosed throughout that period on my show. And it was a super hard time for them. Sort of a double-edged sword, because while being a really hard time for them, so many products came out with, gluten-free alternatives and, it became known through better or worse, that gluten-free was a thing like that it was actually a diet and for people to learn about what gluten is. But yes, someone who goes just, gluten-free just by lifestyle choice, it’s dangerous. I’m just going to say that right now. You should never, and I say this on every single episode. I’m not a health expert. I’m just a guy who found out he had Coeliac disease and then went gluten free.

 There’s just so much misinformation out there about it. And people need to speak to a health professional before they make any changes to their own health or their diet because if you go gluten free, as you were just alluding to before, there’s certain grains that are really good for you.

If you can keep that in your diet, whole wheat bread and oats and, pastas, they have protein in them, which is really great for the body. If you don’t have that autoimmune reaction or if you don’t have non-Coeliac gluten sensitivity and you can’t handle it, they’re a really good part of the diet and it’s actually super difficult on a gluten-free diet to include those, grains and those seeds and things that you actually need. In saying that there are a lot of great alternatives out there now, buckwheat and amaranth and quinoa, and you can get a whole bunch of different vitamins and minerals into your diet while you’re on a gluten-free diet.

But it’s still not the best diet to be on. But a lot of people deem it that way. It’s, a quick fix to all different health issues from what we know. being gluten-free, it only helps people with Coeliac disease or those requiring a strict gluten-free diet.

And you really need to talk to your, doctor before you actually make that switch.

Simon: And do you have to supplement as well to, get extra vitamins, minerals, proteins, because you removed gluten from your diet?

Ben: So, I just try to add in as many grains and, different sort of food groups as I can, and I try to get my dairy in there.

But the problem when you have Coeliac disease, the very top of the Vili what gets damaged is the, I’m probably going to say this term incorrect, but lactase, I believe. And that’s what absorbs lactose into your body. And unfortunately, they’re the first things to get blunted when you start having that order immune reaction.

And so, you lose the ability to absorb lactose and that forms lactose intolerance. So, a lot of people on a gluten-free diet actually can’t have lactose in their diet or they can have just a very little amount. And that’s what I have. And I do try to get my dairy in there because I know that’s so good for bone density and all that sort of stuff.

But apart from that, I just try to eat as healthy as possible and cutting out the alcohol has been a big thing for me too, just to help my gut sort of regenerate. And I’ve had a follow-up endoscopy and they said that everything is going awesome. All my Vili are back and they’re healthy and thriving.

So, I’ve obviously done a, decent job in that. There’s different stuff you got to look out for when you have Coeliac disease, you’re still, a higher percentage risk for developing other sorts of health issues down the track. So, I’m mindful of my sugar intake now as well.

because you can get diabetes and a whole bunch of other health issues and autoimmune diseases down the track if you’re not on a strict adherence to a gluten free diet. But I just try to be as healthy as I can basically.

Simon: Well, Ben, I’m learning so much about Coeliac and I could talk all day about this with you, such an easy bloke to talk to, I really appreciate the vulnerability and, just the openness you’re showing. In terms of what’s some signs or symptoms that people might be experiencing from your experience that might be a little bit of a flag that you recommend, hey, maybe you should go and speak to your gp.

Ben: so most commonly people present with, GI issues, that’s bloating and constipation and diarrhea and just stomach cramps as well.

I used to get horrible, horrible stomach cramps, but basically, I, would say if there’s a gene that you can get tested for Coeliac disease as well. So, I would say if you are having any problems, really any problems GI symptoms, even mental health. Some people present with just anxiety and depression when they have Coeliac disease and that’s it, and they just don’t know all those GI symptoms, they’re just not happening for them.

I would go and get the gene test as well as the antibody tests. And just see if it’s something that’s on the radar or talk to your doctor about it and see if that’s something that you should be tested for. But traditionally, people present with, bloated belly. They’re having a lot of GI issues.

They’re having headaches, migraines. I’ve had a lot of migraines in the past and since diagnosis I haven’t had any. But anxiety, depression. They often go hand in hand as well. Joint issues, back pain, joint pain osteoporosis as well, and osteopenia. They can be related. If someone is diabetic, they should absolutely have the test for Coeliac disease.

And the other way around as well. If you have Coeliac disease should, should be tested for, for diabetes and have your blood sugars checked out and even if you just have lactose intolerance, you should chat to your doctor about that too. It’s so confusing to talk about because there literally are between 200 and 300 known symptoms and someone could go on to Coeliac Australia have the symptoms on their website so people can check that out and, chat to their doctor about that if that’s something that they think they should be tested for.

And absolutely, if you have Coeliac disease in your family, especially if you have a relative, there’s a 10% chance that you could have Coeliac disease, and that’s a higher percentage if you have more than one relative. With Coeliac disease in the family,

Simon: I want to ask you two more questions before I let you go; I’d love to hear you plug your podcast because it is a great podcast for anyone who might be interested in checking it out.

A Gluten Free Podcast

Ben: For sure. So, it’s called a gluten free podcast, and you can find that on any podcasting app that you listen on. And I do a weekly show. I can’t believe that I did a weekly show all last year considering everything that was happening. We had so many sicknesses in the house and. But I, I just want to show up for this community because they’ve given me so much.

And I want to give back to that community and just help them out. So, I get guests on the show and we talk about their Coeliac and gluten-free journeys, or they might be doing some, really inspiring and helpful things in the gluten free community. And then I also share what’s going on in my own journey in between as well.

I have a little segment called Gluten-Free Thoughts and I release that. I try to do it every month and I just talk about what’s happening in my Coeliac and, gluten-free life. And I also have Coeliac Australia on the podcast regularly as well. The non-for-profit organization I was talking about earlier, and they just talk about what’s happening in news and updates and research in the Coeliac world, which is super interesting.

It’s going in leaps and bounds and, it looks like we’ll have a treatment or a, cure at, some stage in the near futures, hopefully. But please go and check it out. If, you have a family member who has Coeliac disease or they’re going through that testing as well, please hand it on to them.

I cover some stuff and, the reason why I made it, I just don’t want anybody else to feel like they’re going through this alone because that’s how I felt. Especially when I was first diagnosed. I thought I was the only one with this, and that’s certainly not the case.

Simon: I highly recommend it and I’ll put the links in the show notes, but also to Coeliac Australia as well, the website so that people can access that pretty easily. And your Instagram as well. Your Instagram’s really a cool Instagram page. I love following you and, and seeing what you’re up to.

But the last question, I’ll leave you with is I like to ask all my guests to plug something that makes them feel good. So, it’s not necessarily anything about Coeliac disease or mental health, physical health, or diet, but it can be if you want. It’s just something that you can recommend to the audience, to check out for themselves and maybe they can feel good about themselves too.

Ben’s Feel-Good Plug

Ben: So, I don’t know if you know this podcast. I’m totally obsessed with it at the moment and I totally nerd out on it, but Huberman Lab podcast. And the first episode I listened to, I was just like, oh, this guy is waffling on, like, it’s something savage for like two and a half, three hours.

But the stuff he talks about is, Amazing. And I don’t know if he has some YouTube shorts or something on that. He’s a huge advocate about getting morning sunlight. It’s his obsession. But just taking a couple of his tips and listening to that podcast for a little bit, I’ve implemented some of those things in my own life and it’s led to me having a bit of a morning routine and, ingesting caffeine at the right times and stuff.

So, I don’t have that arvo crash and just some really helpful practical things that you can sort of implement that are super easy and they’re free. It’s been awesome. It’s been really cool, and I would encourage heaps of people to anybody listening to, go and check that out. He probably doesn’t need any more listeners.

 He’s got heaps, but he’s doing all right. Don’t worry about that. But he’s got a great podcast and I definitely encourage people to go check that one out.

Simon: Awesome. Thanks so much for that. Really do appreciate the plug now, Ben, thanks so much again for, coming on and sharing your, story and, your insights into Coeliac disease.

Really do appreciate, it’s something that is, as I said before, it’s coming up in my family and I’m sure other families around Australia and around the world as well that this is coming up for us. So, I really do appreciate your time, and your expertise in this area.

Ben: No worries. Thanks, heaps, for having me on, mate. And I love the work that you’re doing. I think any opportunity for guys to chat about mental and physical health is awesome because as we know in Australia, it’s a pretty tough thing for guys to actually come forward and chat about this sort of stuff. So,

 Good job.