What if your gluten-free diet isn't enough? Ever wondered why you still face symptoms of celiac disease despite having eliminated gluten from your food intake? In this revealing discussion, I go under the microscope of non-responsive celiac disease, a condition that affects roughly 20% of individuals diagnosed with celiac disease. Through this conversation, I explore how global dietary regulations might be your unsuspected enemy, as they sometimes allow traces of gluten in 'gluten-free' foods. It’s not just about being gluten-free; it’s about being truly gluten-free. I also suggest taking a closer look at your dietary habits; reducing packaged foods could be an essential step towards allowing your body to heal post-diagnosis.
As I navigate deeper, I'll discuss a variety of conditions that could mimic celiac disease symptoms. Conditions like small intestinal bacterial overgrowth (SIBO), microscopic colitis, leaky gut, irritable bowel syndrome (IBS), and even parasitic infections could be the disguised villains making your diagnosis confusing. I’ll also uncover the possibility of sugar digestion issues and the small but significant reality of refractory celiac disease. Whether you're battling celiac disease or supporting someone who does, this episode is a must-listen. Let’s break the chains of misinformation, and remember, I'm here to help you navigate these murky waters.
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Speaker 1:
Now, it's believed that around 20% of people with celiac disease are non-responsive to the gluten-free diet, and essentially what this means is one in five people are still struggling with symptoms after they've gone gluten-free and got their diagnosis. So if this is you, then I want to touch on this subject because it's something that I don't think there's enough awareness around, and you might have heard of non-refractory celiac disease, where people don't actually respond at all to a gluten-free diet, and that number is very, very tiny. That's not many people that actually get that diagnosis of that true refractory celiac disease. So what I want to talk about today is all of the other things that could be causing this for you, where you think that you're not responding to a gluten-free diet, and get to the bottom of this, because there's so many areas that we need to look at and that many people aren't even either thinking about themselves because they don't know about it or their medical team is not looking at it for them. So let's jump on into it Now.
Speaker 1:
The first one I have to touch on is are you truly truly having a gluten-free diet? And the thing is, many people think they are eating a gluten-free diet when in fact, they are not. There is a small amount of gluten that is sneaking into their diet. So you have to be incredibly strict about this, and I'm going to be completely honest and say that I truly believe that people that live in countries where they are allowed to have 20 parts per million of gluten in their diet are not on a true gluten-free diet. And this is not your fault. This is the regulations around your labelling's fault, and I truly believe that it would make a difference if gluten-free food was truly gluten-free, because if you eat a diet that is made up of quite a lot of packaged foods in one day, it would make a difference. The amount of gluten that is getting into your body is probably more than you would think it is. So this is where I think it's very important for people to cut back on packaged food, especially straight after a diagnosis, because your body needs time to heal and your body needs time to get better, to be able to get through this stage of, you know, after your celiac disease diagnosis, to truly get into a state of healing. So the more you know, the more packaged food people are consuming, the more chance there is of that gluten sneaking in.
Speaker 1:
Here in Australia and New Zealand. We're so lucky that gluten-free food has to have zero gluten in it, not 20 parts per million zero gluten. There is no way that they're allowed to put gluten-free on any of our packaging here if there's any chance of gluten being in that product. So we are very well looked after and I honestly believe that these countries that allow 20 parts per million are very, very backwards and you know, I hope that that one day changes and I hope that you know these regulations and these labeling laws become more strict, because I think it is a very important part of truly eating a gluten-free diet. So that might be a little bit eye-opening for a lot of you, but that is just the reality of it. So we're going to touch on that more later on in another episode, but I just wanted to put that little two bits in there about that because that is very important. So if you believe you are eating a gluten-free diet and you're very careful with your cross contact and all that type of thing, then we might be able to rule that one out as being an issue.
Speaker 1:
The next one is SIBO. So if you've got small intestinal bacterial overgrowth, this can you know, present to your body in a way that you may think it's still celiac disease symptoms and from gluten. So you might need to be tested to rule out SIBO and make sure that that's not causing an issue for you. So basically, what it means is there's an influx, or an increase, rather, in bacterial population in your intestines, so it can cause the same sorts of symptoms that celiac disease can, such as diarrhea and intestinal pain, things like that. So you know that's one to look at. If you are still struggling with symptoms after your diagnosis and cutting out the gluten, so that's something to look into. Another one is microscopic colitis. So again, that's another one that you'll need to look into and rule out.
Speaker 1:
The next one is leaky gut. So if your body is, you know, struggling from leaky gut again same sorts of symptoms that you can struggle with from celiac disease. And another one is IBS. So if you've got irritable bowel syndrome, then again the symptoms can be so similar, right, but what we also see is there's an increase in people with IBS that have, I guess that, the psychological side of it as well. A lot of people think that this is rubbish, but there is a very strong correlation between the stress levels and your mindset and things that go on up in your head to your gut, and I've talked about this numerous times how our actual brain and our gut talk to one another. So that is another area that you might need to look at.
Speaker 1:
With IBS, and you know, if you have got a hold of your celiac disease and you're you know you're gluten free then there could be other foods that are causing you problems and that's why you need to look at whether it is IBS for you as well, alright. The next one is difficulty digesting sugars. So, whether that be lactose in dairy products, or whether it be sucrose in table sugar, or even fructose, things like honey in your fruits and things like that. So some people find that you know they have a true difficulty digesting those, and that can be where you know you think you're having these symptoms that are from celiac disease or gluten, but it's actually from those sugars. So another area to look at in, you know, in your body, and find out what's going on for you, alright.
Speaker 1:
The next one is parasites. So would you believe, if you've got parasites in your body, so think, for an example, worms in your gut, they can cause things like abdominal pain, they can cause things like diarrhea and you think that it's because you are not, you know, doing well on your gluten free diet. But it's as simple as you've got worms, so that's an easy treatment. If you discover that you've got worms, so you can, you can easily get rid of those through medications. So, again, another area to look at.
Speaker 1:
And then, last but not least, is true, true refractory celiac disease, and this this is not easy to get to the bottom of, because you need to roll out all the all of these other areas and truly be on a gluten free diet to absolutely come to that conclusion that your body is not, you know, doing well on a gluten free diet. And it is when I talk about this. It is a very, very minute number of people that get to that final point of it being a true, you know diagnosis of this refractory celiac disease. So please know that not many people get to that point. If you can get through this list of other areas and roll out all of those with your medical team, then you know you might get to that point of getting that diagnosis.
Speaker 1:
But I would hope, I would truly hope, that if you work your way through this list, that you would find that it's one of these areas that are causing this problem for you and that you can get on top of it and you can start to really heal your body and start to feel better. Now, if you started just at the first one, with it being gluten free and a true gluten free celiac disease diet, then you know that that could be the easiest one to look at and to really get on top of. So, if you are in a country that allows the 20 parts per million, I would say it is worth doing a Whole Foods diet and just truly seeing if eating Whole Foods makes a difference for you. That might be mind-blowing, that might be scary, but it could be the answer to you feeling better and cutting out packaged foods because, like I said, if there's gluten in your packaged foods and you're consuming a number of those over the day, that adds up and that's where it's causing those issues. So that's certainly something worth looking at.
Speaker 1:
Now, with all of this, you are more than welcome to reach out to me if you need any help from me in getting through this. I you know this is my key area. This is what I love to do to help people. There's obviously tests involved in a number of these things that we've talked about today that are outside of my area of expertise. I cannot do them. You will need to work with your medical team. But I can definitely help you with the first one of making sure that you are eating a true gluten-free diet and making sure that you're not, you know, getting that cross-contact and all of these problems from the actual gluten-free diet, and you know you're more than welcome to reach out to me or check out my programs that I have available for you. So just head to my website, belindawheelandcom, if you want to learn more about those. Otherwise, feel free to send me a message on Instagram and we can have a chat there. So my handle is the healthy celiac and I'll respond to you as soon as I can.
Speaker 1:
But yeah, I hope I hope this helped because you know, when you look at it, one in five, that's quite a high number, like 20% of people with celiac disease still struggling with symptoms afterwards. That's quite a high number. So I hope this is an eye-opener and enlightening and helps you get some answers, or at least helps you start to look for some answers, moving forward and, and you know, starting to feel better and improving your help. So that's you know. That's the main goal. So, yeah, thanks for tuning in and I look forward to talking with you soon. And if this has helped you in any way, I'd love to hear your feedback and you know you can always leave me a review over on Apple Podcasts, you know. Let me know what you learned from this and leave me a review. That would be fantastic. So I will talk with you again very soon. Have a great week and I'll talk to you then. Take care, bye.