The Dangers of Self-Diagnosing Gluten Intolerance: Why Professional Testing Matters Ep. 171

Transcript

Speaker 1: 0:24

Welcome back to the show Now. An important topic today because it's something that I'm seeing more and more. As the weeks or the years go on, I'm seeing more and more people diagnosing themselves with an intolerance to gluten and just no longer eating it, and I wanted to talk about why this self-diagnosing can be quite dangerous and it's not the best way to go, so let's jump on into it. So what I'm seeing is this huge trend in more and more people learning about gluten, learning about gluten-free food, and thinking, yeah, actually when I eat gluten, I feel bloated or it just doesn't sit right with me, I feel really heavy and I don't think it works for me, so I'm just not going to eat it anymore. So these people are deciding to not eat gluten and you may be one of those. You may not actually have a celiac diagnosis. So this is no judgment. This is just an awareness thing, because I need to get this out there so that more people are doing the correct thing by their health and getting tested. So that's why I wanted to talk about this on today's show. So the problem is with people self-diagnosing is they're not taking it as seriously and they could, in fact, have celiac disease or non-celiac gluten sensitivity. So, as you know, with celiac disease we need to be 100% gluten free. So that means zero gluten in our system, no cross contact, taking it seriously, always eating gluten free, not having gluten occasionally when we feel like it. We need to be very, very strict with our diet and our lifestyle because our health relies on it. Like this is our prescription to our health in gluten-free and our future relies on it. So when you have a celiac disease diagnosis, you are more likely to take it seriously. And if you are here because you have celiac disease, you're obviously very well tuned with that because you're learning more about celiac disease and how to. Obviously very well tuned with that because you're learning more about celiac disease and how to look after yourself. So hats off to you. But if you're here because you're like, oh, I need to learn more about why I shouldn't just be eating gluten-free, then welcome, it's great to have you here also. So the problem with not getting a diagnosis is that whole not taking it seriously. So let's just think about it, like, okay, you get this heavy feeling or you get this bloating and you go, okay, I'm not going to eat gluten. And then you go out with friends and everyone's ordering pizza and you're like I'll just have some pizza. And then you eat the pizza and then you feel rubbish the next day and you're like that's right, I'm not eating gluten. I'm not eating gluten.

Speaker 1: 3:12

What if you actually have celiac disease but you haven't got a diagnosis? You will keep doing this. You will keep doing this over and over and not really learn the lesson and not take it seriously. Every time you consume gluten, you are doing damage to your body. You are adding the load to your body that will cause long-term problems down the track. So when you do have a celiac disease diagnosis, you will take it more seriously.

Speaker 1: 3:40

So how do you go about this? You need to get tested. It's as simple as that. But in the lead up to getting tested, you need to consume gluten. I will pop a link below to an episode that talks all about what you actually need to do to get tested, but to take it seriously, okay. So go and get tested, do all the right things to make sure that you either don't have celiac disease or you don't have non-celiac gluten sensitivity, and it's just an intolerance. It's just you feel a bit yuck from eating it. Then that's okay. It's up to you to just go okay, I'm not going to eat gluten very often and if I do, it's not a big deal. It's not causing my body major damage where your body literally attacks itself. So celiac disease our body literally attacks its own tissues and cells. You do not want to be dealing with that. If you do have celiac disease, our body literally attacks its own tissues and cells. You do not want to be dealing with that if you do have celiac disease. So when people are self-diagnosing, this is where this is happening, because they are just taking it on board that they think they know it's okay to just eat gluten-free, when in fact it's not ideal. If you know someone that has just gone gluten free and they're pretty good with their diet and they don't eat, you know as strict or as well as you they could in fact have celiac disease. They could very likely have celiac disease, but they're not taking it as seriously. So if you talk to people and they say, oh yeah, I feel pretty rubbish when I have gluten, maybe I've got celiac disease, I would encourage you to advise that person hey, just go get tested. It's as simple as starting with a blood test. That's all you need to do Eat gluten in the lead up to a test and go and get tested through a blood test and from there your doctor will decide whether further tests need to be done. But it's as simple as just getting that ball rolling and getting started with that process of testing.

Speaker 1: 5:42

So when people tell me about you know, friends, relatives, people in their life, even themselves that, oh yeah, such and such they can't eat gluten or such and such, oh, they feel terrible when they eat gluten. They could have celiac disease, they could have non-celiac gluten sensitivity, but they're not taking it seriously. And it does break my heart because the more people that get diagnosed, the more awareness there is, the more seriousness there is towards people with celiac disease and the more funding there will be towards finding a cure. So definitely encourage anyone that you know that talks about gluten and wanting to eat gluten free, encourage them to get tested first. And if it's you that you're listening, for this exact reason, I highly, highly encourage you to go get tested for celiac disease first and just simply rule that out. You know, if you could rule that out, that's wonderful. You may then need to look at hey, could it be non-celiac gluten sensitivity? And I've talked about this on another episode, but I will just jump into this quickly, just so you have an awareness, and this is what my son has.

Speaker 1: 6:48

So my son he is now seven he was diagnosed with non-celiac gluten sensitivity when he was just four years old. He was not thriving, so he had a lot of symptoms of celiac disease. So he was constantly lethargic, he constantly had diarrhea, he constantly had a sore tummy. He would feel cloudy in the head. The way he explained it was. Things were blurry in his head and I think he was trying to explain that. He had headaches, he was not well, he did not have energy and I was convinced that he was going to get a celiac disease diagnosis. He didn't get a celiac disease diagnosis.

Speaker 1: 7:28

We went to multiple gastroenterologists. Both of them came up with the same conclusion that my son has got non-celiac gluten sensitivity. One of the gastroenterologists said that's good. When he's older he'll be able to just eat gluten and, you know, when he's a teenager it'll be so much easier because he'll be able to go out with his mates and still eat gluten if he wants to. No, that's not actually true, because when you have non-celiac gluten sensitivity, you still have all these horrible feelings. So, as I mentioned, what my son has been through and what he feels like when he has gluten he feels rubbish. He's never going to want to eat gluten, and what happens in individuals that have non-celiac gluten sensitivity is their body gets inflamed. So when your body is constantly in a state of inflammation, this can lead to disease. So people that have non-celiac gluten sensitivity and don't take their diagnosis seriously and don't eat 100% gluten-free will probably find that later on down the track they will get diagnosed with some form of of disease. So thankfully, my son takes his diagnosis 100% seriously.

Speaker 1: 8:51

I've said this before he would make the best celiac because he advocates for himself. He asks so many questions when he's offered food by people, he asks me to read labeling. Sometimes he doesn't even believe me that I'm giving him gluten-free because it looks too good to be true. So he even questioned me having celiac disease. So he does an incredible job of keeping himself well with his diagnosis and making sure that he's on top of eating the right foods, and he's even very strict with his sister like don't come at me with gluten on your hands and things like that. So he does an amazing job of it and that's the level that we need to be focusing on.

Speaker 1: 9:34

With celiac disease, with non-celiac gluten sensitivity, if it's just a little bit of an intolerance and you know your body can handle a little bit, that's a different story. So I urge you to definitely get a test if you are finding that gluten is really not sitting well with you and you just want to rule it out, or you just want to get some answers so that you can take it a little bit more seriously. Please, please, book an appointment with your doctor or your health practitioner. Make sure you go back and listen to the episode about how to get a correct diagnosis, because many doctors aren't following the procedure correctly and you'll find so many people get false negatives, which basically means the test was done incorrectly, and they struggle for years and years and years and then they get a diagnosis by fluke later on. So make sure you're getting the test done correctly and also, if you do know someone that wants to eat gluten-free because they think it's a great choice, I urge you to encourage them to go get tested as well.

Speaker 1: 10:36

So quick episode today, but I really wanted to talk about that because I'm seeing more and more people self-diagnosing, which is never a good idea. And the other thing is which is never a good idea and the other thing is if you self-diagnose and you eat gluten-free and one day you go, oh, I actually do want to get tested, you will feel like rubbish because you have to eat gluten for at least six weeks to get it back in your system so it can show up in your blood test. So you're better off doing it now and getting it out the way than later on. And the reason that this is important is later on down the track, you may get funding for food, for gluten free food, you may get funding for prescription medication. You just don't know what's going to happen in the future. So that's something really important to think about as well for not self-diagnosing. So something to think about, something to really look into.

Speaker 1: 11:31

And, like I said, I will pop a link below this episode in the show notes for you to go back and listen to the episode for how to get a correct diagnosis. So thank you so much for listening. As always, thank you for being here. If you have any questions at all or you want to, you know, thank you for being here. If you have any questions at all or you want to, you know, give me an idea for an episode. Please reach out to me at the Healthy Celiac on Instagram or, if you're on YouTube, just pop me a comment below and I'll respond to you directly there. So thanks for listening and I'll talk to you next week. Take care, bye.