Welcome to another episode of the Life Enthusiast podcast! On today’s episode, Martin Pytela chats with Belinda Whelan, the Healthy Celiac Coach, about the complexities of celiac disease. Belinda shares her personal journey, emphasizing the importance of proper testing and diagnosis, which is often missed or mistaken for other conditions. She explains the genetic factors and how life events can trigger symptoms.
Belinda also highlights the wide range of symptoms beyond digestive issues, including brain fog and fatigue, and discusses her coaching services and online program to support those managing the disease. Tune in to learn more about the proactive steps needed to live well with celiac disease and improve your quality of life.
To find out about Belinda’s coaching program, you can check out her website: Belindawhelan.com
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MARTIN: Greetings. This is Martin Pytela for Life Enthusiast podcast. And today with me, Belinda Whelan. She is the Healthy Celiac Coach. We’ll ask Belinda to explain, but welcome.
BELINDA: Thanks, Martin. Thank you so much for having me on your show. It’s great to be here.
MARTIN: Yeah, I appreciate the fact that you bring yourself a different continent, different accent, different experience, all of that. That’s just awesome. I love that.
BELINDA: Yeah, yeah. It’s always great to connect with people on the other side of the world. I’m in Australia, so. Yeah, we were just saying earlier, winter here and summer for you. So, yeah, it’s great to connect.
MARTIN: And it’s great that, of course, now it’s possible for us to consult with people using the same tool that you and I are using right now, talking over the Internet as if we were in each other’s face.
BELINDA: Yeah, it is wonderful isn’t it?
MARTIN: Yeah, great.
BELINDA: Love it.
MARTIN: So you come to it with Celiac in your business title. Most of the people that come to Life Enthusiast website come here looking for a solution to a problem that they may not necessarily understand. And I think that there are way more celiacs out there than what meets the eye or than what people think. They think, oh, I have just a little bit of indigestion, or I have a little bit of brain fog, or I have a little bit of immune challenge. Turns out, and I’m telling you, the world, that if you have a leaky gut, you also have a leaky brain and you also have a leaky immune system.
BELINDA: Yes.
MARTIN: What can you say to that?
BELINDA: Yeah, I mean, celiac disease is one of those autoimmune diseases that I guess is becoming more and more known, whether that’s to do with more awareness or more people getting diagnosed, but it is, when we look at it, it’s not uncommon. Around 1 in 100 people do have celiac disease, and unfortunately, so many people are undiagnosed or misdiagnosed, and this is a big one. So they go to their medical practitioner and they’re being diagnosed with something else. So whether that be IBS or something along those lines, because it’s not being picked up. And my story is very similar. It took me over a year to get a diagnosis, which sounds like a long time, but for some people, they don’t get diagnosed for 10, 20, 30 years and they struggle with the symptoms. So it is something that it’s important for people to have more of an awareness of so that they can get a diagnosis. But, yeah, It is very undiagnosed and misdiagnosed, unfortunately.
MARTIN: So what do you rely on with diagnosing?
BELINDA: So the key way to get a diagnosis is first through a blood test. So you need to go to your medical practitioner. They will do a blood test for the gene. So they are looking for two genes. So it’s either HlADQ2 or HLADQ8. So most celiacs will carry one of those genes or two of those genes, and you get them from your parents. Some people have been diagnosed without those genes, so having said that. But generally they are looking for those genes.
If you have that gene, it doesn’t mean you’ve got celiac disease. Something has to actually trigger the gene to kind of turn it on, and that can be a number of factors. So for me, it was childbirth. I never had any symptoms whatsoever before I had my daughter, and childbirth was the trigger for me. And so many people say that different things have triggered their celiac gene. So things like the loss of a loved one, a car accident, illness, there’s so many different things. I’ve asked people what they believe triggered their celiac disease and the answer varies.
My audience is mainly women, and the most common answer has been childbirth. Something triggers that and then you have this immune response. Basically what happens is you consume gluten, which is in a lot of foods, and your body sees that as a foreign body and it starts to attack its own tissues and cells. So the body starts to break down and does further damage. And you can get very, very sick and it can cause more problems and more ongoing issues later on in life if you don’t get on top of it. So this is why it’s important to look at these different signs and symptoms that can relate to celiac disease and go and get tested for it.
MARTIN: You’re essentially naming high stressors, whether it’s loss of a loved one, moving, getting to school or not getting to school, giving birth, especially. I mean, this is the hormonal change that goes from being in a regular cycle to being pregnant for x nine months and then all of a sudden back out of it. Right. That’s a major restoration. And of course, the pregnancy itself is a major stressor on the body.
BELINDA: That’s right. Yeah.
MARTIN: So no surprise there. I always like to think of it as the load on something. The thresholds and the triggers, right?
BELINDA: Yes.
MARTIN: The threshold is what’s our resilience, and triggers are piling on until all of a sudden the triggers are above the threshold and flood.
BELINDA: Yes. And then the body’s like, no more, can’t cope. And you get given all of these issues and a lot of people that are aware of celiac disease think of it as just a gastro issue, it’s a problem with the gut and it’s diarrhea and it’s feeling unwell and fatigue. But there’s so many more symptoms. There’s hundreds of known symptoms linked to celiac disease and some of the most ridiculous things that you wouldn’t go to your doctor and think you’re going to walk out with a celiac disease diagnosis, one of them being a cough that will not go away. So some people have reported that the only symptom that they had was this ongoing cough for months and months and months, and then they got a celiac disease diagnosis, started eating gluten free, and the cough went away.
MARTIN: Right, so the solution was to stop the input of this irritant that is causing all this inflammation, right?
BELINDA: Yeah, that’s right, yeah.
MARTIN: Okay, so what about Doctor Marsh and his Marsh one through to five, doing the biopsy and taking a look how worn the villi are, is that part of what you need or doesn’t really matter?
BELINDA: So what they call the gold standard is you get a blood test that sees if you have the gene initially, then they’re looking at your blood levels to see whether the gluten is causing you issues. From there, then they will go and do a biopsy. So some countries will bypass that and not even bother. So I was diagnosed 15 years ago, I was not given a biopsy because I’d already gone gluten free and my gastroenterologist didn’t want to put me on the gluten. My blood was through the chart off the show that it was like they could tell without a shadow of a doubt that it was celiac disease. Some children, they don’t want to put them through that extra trauma. It is being put under and having things put down your throat. It is traumatic for some people, so in some instances, they don’t need to do it, but they do say the gold standard is to do that and look at how much damage is happening, so.
MARTIN: Right, okay, so how far down you are on the journey from healthy to completely unrepairable, yeah? So transglutaminase, is that the test that you’re talking about?
BELINDA: Yes. So they’ll check that in your blood and they can see from there, and that’s where they can make a decision. It will depend completely on that blood level and then from there, whether they send you off to get that endoscopy. So some people will get an endoscopy and a colonoscopy. I did have a colonoscopy. Years after my diagnosis, I had gluten sneaking back into my diet. Accidentally my butcher had changed his bacon, and the bacon had a wheat liquid injected into it. So it’s just crazy where gluten is.
BELINDA: So I was getting ill again, and they just wanted to check that my villi was okay.
MARTIN: You just threw in the most crazy notion. Can you believe that somebody could betray you so much and put wheat inside your bacon.
BELINDA: Yeah, right. Like, we shouldn’t even have to think about that. It’s meat. And, I’d been going to this butcher for a very, very long time. Had always bought my bacon from there. And I do look at it now and go, I did get complacent because I always bought my bacon from there. I didn’t continue to check, I probably went there once a week, once every two weeks. It’s not like every time I was like, oh, is your bacon still gluten-free? Is your bacon still gluten-free? I did get complacent. So that was a massive lesson. But who would think that they’re injecting bacon with a wheat liquid? They are. They do it. It’s common. It’s in ham. So processed ham, they will put wheat liquid into it as well. It plumps it up. It makes it cheaper. So, yeah. interesting.
MARTIN: You do not have to be checking all the time. It’s just a betrayal of the society. Perhaps in a sense, right, they don’t think twice of it. I mean, my grandfather was a butcher. He made wieners, and he made it with wheat soup. Right? They were wheat wieners.
BELINDA: Yep.
MARTIN: Now, it’s hard to get a gluten-free wiener, isn’t it?
BELINDA: Yeah. I haven’t looked, but I’ll take your word for it.
MARTIN: I don’t know. So, interestingly, I lost my oral tolerance for wheat at about age 55. Like, it was undeniable. I was able to eat spaghetti back in my thirties without breaking out or having horrendous symptoms. I just had some, right? Like, I had a swollen belly, but didn’t think much of it. Right.
BELINDA: Yeah. So you weren’t ever tested for celiac disease.
MARTIN: Yeah, it just wore off. I tried to explain it to people saying, well, it’s sort of like a new set of tires. When you have a new car, it’s all good. And then at 50,000 miles or whatever it is, that’s the rate at which you’re driving, riding on slicks on a dry summer day, that’s all good. But if it rains, you’re in the ditch.
BELINDA: Makes sense. Yeah. And a lot of people do go gluten-free and just feel better. Like, they don’t go and get tested for celiac disease. They just make that decision to eat gluten-free. And this is where I like people to go get tested. If they do suspect that it is gluten that’s causing them issues because they will take it more seriously and look into it deeper. And there’s so much more than just eating gluten-free. It’s making sure there’s no cross-contact with crumbs in your kitchen or when you eat out and things like that. So, yeah, there’s a lot that goes into it. That’s for sure.
MARTIN: Yeah. Okay. So to get practical in this conversation, I know that you do both one on one sessions and group sessions. So somebody on this end who thinks I have these, who knows what problems that have been protracted. It’s just not getting better. I wonder, maybe I should talk to Belinda.
BELINDA: Yeah, sure. If someone wants to get in contact with me, they can certainly do so by my website, which is belindaweland.com, and we can have a chat there. But the first step is definitely to get a diagnosis that’s out of my hands. That’s not what I do. My expertise is supporting people after they get a diagnosis and helping them get back to being healthy and on their journey to wellness.
MARTIN: So we should put a pin in it and say, hey, go get yourself a diagnosis, because if you have it, you will need help. I promise you. I have a fairly close member in my family who’s been through this journey. I’ve watched it. It can be very, very arduous. Yes, you want to have help. This is not something that’s easily done on your own.
BELINDA: That’s exactly right. I mean, I got my diagnosis. My doctor said to me, Belinda, you’ve got celiac disease and you just need to eat gluten-free. I can still hear his words. You just need to eat gluten-free. So I went off and I tried to figure it out. I made sure all the food in my kitchen was safe, but I didn’t realize that I had to change my toaster or use separate chopping boards or be careful when I ate out. I didn’t realize it was that intense. No one ever told me that.
I went to a dietitian who literally sat on the Internet and googled, what is celiac disease? And printed me a booklet that he found online. And I could have sat at home and done that myself and kept my $150. So, he wasn’t an expert. And this is why I wanted to help people with celiac disease, because I didn’t get the help that I needed. And this is not uncommon these days. This is 15 years ago, and even today, I get people come to me and tell me that my story is their story and the same thing has happened to them. They were told to just eat gluten-free, and it’s not that easy. So, not much has changed in the 15 years since my diagnosis.
MARTIN: Yeah. The detective skills that you have to acquire are daunting, and also the assertiveness that you must learn to display. That’s not easy because you need to be a bit of an abrasive person in order to get your way.
BELINDA: Yes, it’s definitely a big part of having confidence. So, in my course, the ultimate celiac system, I take newly diagnosed celiacs all the way from the beginning, to the end of what they need to do to live with celiac disease. And it’s also designed for people that have had celiac disease but are struggling. And in that program, I teach people that they do need to be confident when they’re ordering out. They do need to ask the right questions. There’s a process to go through when you are ordering food, because so many people tell me they go out and they get glutened and they get angry, and they feel so annoyed at their servers because they got glutened. But then when I asked them, did you say this? Did you check this? Did you do all of the things that you needed to? Oh, no, I didn’t. It’s like, well, if you do these things, you have less chance of getting sick, and you have that time.
BELINDA: I’ve traveled the world since I got my celiac disease diagnosis, and not once have I been glutened. I’ve been to multiple countries, and most of them, English is not their first language. So it’s learning these little tricks and techniques of making sure that the food you get is safe and that they’re looking after you.
MARTIN: As you’re describing, I’m thinking of dating. Visualize yourself as a teenager or whatever age you want to be, and you’re in on the dating scene, and you are, especially a woman, so vulnerable. Right? I mean, you could end up pregnant, but you could end up with STD. You could end up with a person who’s going to be violent with you. You could just be in all manner of trouble. And it’s like that. You’re taking your life in your hands, really.
BELINDA: Yeah.
MARTIN: Right.
BELINDA: That is a really good way of putting it, actually, Martin. So it’s having that trust initially, definitely. But having your wits about you. There are red flags when you’re dating, and there are red flags when you’re eating out. So you’ve got to look out for those red flags. You’ve got to be on top of the way people are reacting to you. So I always say to my students and my clients as well, if you’re ordering a gluten-free meal and someone is a bit blasé in their answers or they’re not confident, that’s a red flag right there. You need to send that person to the chef and get the answers that you need.
We need to make sure that we’re confident and in ourselves. And I always teach people as well. You never bother. You’re never putting other people out. Your health is the most important thing, and you are more important than someone else’s opinion of you.
MARTIN: Okay, so can you be a little bit of celiac, sort of like a little bit pregnant, or is it all in?
BELINDA: No. So the thing with celiac disease is you’ve either got celiac disease or you don’t. It’ll never go away. So once you’ve got celiac disease, that’s it. You’ve got it for life. Until they get a cure, if they come up with a cure. But everybody is different. So my mom has celiac disease, my brother has celiac disease.
We are all very different. So for me, one of my symptoms is chronic diarrhea if I accidentally consume gluten, whereas my mom is the opposite, she gets constipation. So you can’t kind of look at it and go, everyone’s the same. But then there’s some people that have celiac disease that are asymptomatic, which means they have no symptoms whatsoever, which is really hard, because those people tell me that they find it the hardest to be strict because they don’t feel rubbish. So for me, I would never consume gluten on purpose. I would never, ever go “oh, I just really feel like having this delicious chocolate doughnut because I miss them.”
BELINDA: I wouldn’t do that because the pain would not be worth it. Whereas people that don’t have any symptoms, like, what have I got to lose? So they have to really know in their head that, hey, this might cause further issues down the track. So, yeah, we’re all different. And that’s where some people do get a fluke diagnosis. So it’s an interesting one.
MARTIN: How do we sort out the people that are listening to it from “I think I need it”, or, “no, that’s not me”. What do you think? I would like to help deliver some sort of a tool here that says, pay attention. This is not something to pass.
BELINDA: I think the biggest thing is if you are living with symptoms that you’ve never been able to pinpoint, you’ve never been able to get answers for, maybe you’ve seeked the help of a naturopath or a doctor, or you’ve spoken to someone, and no one can really pinpoint what it is that’s causing your issues. You can just request a test for getting a celiac disease test, and it’s as simple as that, and then you can at least rule it out. Because if you can rule it out, you know it’s not that. But if it is celiac disease, then you can start to eat gluten-free and feel better. And it’s one of those things that we were talking about earlier, Martin, where we get used to feeling a certain way. So, for me, my symptoms started very slowly, and over time, they got worse and worse, and I just got used to it. And it wasn’t until my family members pointed out to me that I didn’t look well. I didn’t look healthy. I wasn’t really coping, and I wasn’t my normal, healthy self. We kind of live in pain and get used to it. So if you are living an unhealthy kind of way, you might have brain fog, you might have lethargy, you might feel fatigued all the time. You might have this heaviness or an unexplained cough. If you’ve got a child that is failing to thrive, I was talking to a lady the other day, and her daughter got diagnosed with celiac disease six months ago. She goes, I can’t believe how much she’s growing now, she’s just shot up. And it’s because her body is absorbing the nutrients that she needs to grow now, whereas she wasn’t before.
BELINDA: So you might get sick all the time, you know, your body’s not absorbing the nutrients you need to be healthy.
MARTIN: Yeah. So how old was this child?
BELINDA: I think she was about nine. So she’d suffered for a little while with symptoms, but she wasn’t growing. So that’s a big sign in children if they’re quite little. So, people go “oh, they’re just little” or “oh, they don’t grow much.” That can be a major sign of celiac disease because the body is not absorbing the nutrients from the food that they’re eating. They may be hungry all the time, constantly wanting to eat because their body is starving for nutrients. So that can be a symptom as well.
MARTIN: Yes. I’m thinking of the more common things like osteoporosis. Of course, you’ll be losing minerals because of it. All the inflammatory diseases, whether it’s cardiovascular or joints or you name it, all of that can be indeed pushed from there.
BELINDA: Yeah. Joint pain is a big one. That’s always a lot of people’s symptoms, if they accidentally get gluten, they’ll tell me as well that they feel that achiness. It’s almost like the way I look at it with my symptoms, I go, it’s like being pregnant and having the flu and also food poisoning all rolled into one. Just throw all those into one. And that’s how I feel. So it’s awful. I wouldn’t wish it on anyone.
MARTIN: No, we don’t. Okay, so the story is, if you have problems that are not being solved, get diagnosed, check your blood for transglutaminase, and right next after that, get your genetic diagnosis. If you have already done the 23 or me or ancestry or something like that, it will be in that file. It’ll be buried inside it.
BELINDA: Yeah. And if you’ve got a direct relative that has got celiac disease, so whether that’s a parent, child, or a sibling, you should definitely be getting tested anyway. There are many people that have got a direct relative and they just go, no, I’m not getting tested because I don’t want to know about it. But then someone like my brother, who struggled for years with symptoms, and I said to him constantly, you need to get tested for celiac disease. No, no, no, no. And then it got to a point he couldn’t handle it anymore and he went and got a diagnosis.
MARTIN: Yeah, this is the famous “ostrich method of healthcare.”
BELINDA: Yep.
MARTIN: Head in the sand.
BELINDA: Yeah, exactly.
MARTIN: Okay. All right. I’m looking at your website here on the side here. So you have a six month program to take somebody from. I don’t know what to do. Right. The reason people want to talk to you is when they are dumped into this world of, well, you are celiac.
BELINDA: Yeah.
MARTIN: And it’s not going to be simple.
BELINDA: Yes, that’s right.
MARTIN: The world is conspiring against you in ways you have no idea how hard it is.
BELINDA: Yeah, you’re exactly right. Yeah. And what’s making it hard as well is some people are eating gluten-free because it’s trendy or they think it’s a diet and it makes it look bad for those of us that legitimately need a real safe, celiac safe meal. So those people do make it a little bit trickier. Yes. We have more options for eating out, but they make it a little bit trickier for those of us with celiac. So I always say to my students, make sure when you’re ordering, you tell your server that you have got celiac disease so that people take you more seriously as well. So there’s all these little steps and little tricks that we need up our sleeve.
MARTIN: Okay, sounds good. Belinda, where do we send people on your website? And what is the website?
BELINDA: So. Belindawhelan.com.
MARTIN: So, okay, I’ll put it in the show notes.
BELINDA: Yep. Pop that in the show notes. That’d be great. So, yeah, if anyone wants to connect with me, that’s the best place to head to. It’s got links to my podcast, which is the ‘Healthy Celiac Podcast’, Instagram, on all the socials and that type of thing. So, yeah, that’d be great to connect with people there. And if they want to have a chat with me, they’re more than welcome to send me a DM over on Instagram as well.
MARTIN: Wonderful. It’s such a pleasure to meet you, and I’m really happy to be able to introduce you to our audience. Many of them will need you.
BELINDA: Yeah, I’m sure there’ll be some brains ticking over and people thinking about these symptoms and whether it could be affecting them. So I appreciate you allowing me to share with your audience, Martin. I really appreciate it.
MARTIN: Thank you for taking the time.
BELINDA: Thank you.
MARTIN: This is Martin Pytela, life-enthusiast.com. You can phone us, too, at 866-543-3388. Thank you.
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