Managing Life After a Celiac Disease Diagnosis Ep. 155

Struggling to figure out the ins and outs of living gluten-free since your celiac disease diagnosis? You're not alone, and this episode is a game-changer. I delve into the nitty-gritty of transforming your lifestyle to protect your health, going beyond the typical "just eat gluten-free" advice. From the essential follow-up appointments and blood tests to the vigilance with cross contact I share the challenges that come with a celiac diagnosis.

As we break down the day-to-day management of celiac disease, I share my personal journey, including the eye-opening discovery of how brown rice (even though gluten free) affected my health. This episode also explores the supportive scaffolding necessary for anyone navigating this path: the crucial steps of educating friends and family, the value of a shared community, and why expertise from celiac specialists trumps general dietary advice.

Previous Episodes Mentioned
Ep. 153 - Navigating Celiac Disease with the Help of Beneficial Bacteria

Find out how Ultimate Celiac System can support your Celiac journey here
https://belindawhelantraining.com/ultimate-celiac-system

Wish you could get gluten free meals on the table fast that the whole family will love? Check out Meal Plans Made Easy
https://belindawhelantraining.com/gluten-free-meal-plans-made-easy

Join my free community and grab your copy of 11 Mistakes People Make Living Gluten Free here www.belindawhelan.myflodesk.com/11mistakes

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Music Credit bensound.com 

Chapters

• 0:00 Navigating Life With Celiac Disease
• 8:24 Celiac Disease Management and Support

Transcript

Speaker 1: 0:24

If one in five people with celiac disease are still consuming gluten after their diagnosis, why is this so? On today's episode, I want to talk about this because it's so important to get to the bottom of why this is happening. Now, I believe that there are a number of factors that contribute to this statistic, the first one being not having the education that these people need to be able to eat a gluten-free diet. Now, if you've listened to any of my previous episodes, you would know that all I was told after getting my celiac disease diagnosis was just eat gluten-free. Just eat gluten-free is not enough information for a newly diagnosed celiac, is it? You would probably know this as well. You may have even been told the exact same thing. I hear it all the time. People tell me over and over and over. My doctor said just eat gluten-free. My gastroenterologist told me just eat gluten-free. What does just eat gluten-free mean? It is not enough information. Just eat gluten-free all the time. Just eat gluten-free when it suits me. Just eat gluten-free food because some things are labeled gluten free. It's not enough information. So what I want to achieve on today's episode is to give you the lowdown on what needs to happen when you get a celiac disease diagnosis. If you are brand new to the show, welcome. I do get on my high horse a little bit. I love to get up on the soapbox and just share what I know, because it's so, so important. I've had to do my own research over the years, I've had to heal my own body and now I do that for other people by helping them and support them.

Speaker 1: 2:17

So today's episode is about what happens when you get a celiac disease diagnosis. Or if you've been listening for a long time and you're a regular listener of the show and you may not have all of these steps into place. So this is what I want to talk about is what happens after you get a celiac disease diagnosis. So, generally, what happens exact same story as me you go to the doctors, you get given your diagnosis. I know of some people that don't even get a follow-up appointment. They get an email or they get a phone call from their doctor's office saying, yes, your celiac disease is confirmed, and that is all they get. This is disgraceful. This is not enough support for a newly diagnosed celiac. So this is where I love to come in and help people.

Speaker 1: 3:08

So what happens when you get a celiac disease diagnosis is, you should be having follow-up appointments. If you have been given your information via a message, via an email, book a follow-up appointment with your doctor and find out what the next steps are, because you may need to have further testing. You may need to have a bone density test and find out what the condition of your bones are. If you had symptoms for years and years and years prior to your celiac diagnosis, you may have the early onset of osteoporosis and need to get that checked out. So I highly recommend that.

Speaker 1: 3:43

From your blood that they took, can they tell you whether you need certain vitamins. Can they tell you whether you're anemic. Can they tell you whether there's other testing that needs to be done in the next six months to see how you're improving. There's so much that your doctor can diagnose you with and look at from that blood test other than just celiac disease. So please book a follow-up appointment and check that.

Speaker 1: 4:07

If you got diagnosed two years ago, five years ago, you need to be having annual blood tests to check how you are progressing with your celiac disease. They can see in your blood whether you've accidentally consumed gluten, whether it's somehow sneaking into your diet. They can see whether you've become anemic. They should also be testing you for other things, such as diabetes, thyroidism and making sure that your health is on track. So please make sure that you're getting an annual checkup. If you're not doing so, book that in. Keep on top of your health and make sure that your diet is 100% gluten-free.

Speaker 1: 4:45

Now the next thing, once you've got a celiac disease diagnosis, or if you've been living with it for a long time, is to educate yourself. Okay, educate yourself on what it actually means to live with celiac disease. Yes, you need to be eating gluten-free 100% of the time. No cheating, no sneaking a little bit in here or there. Really making sure that you know how to live a gluten-free lifestyle, because if you don't have a true understanding of that which unfortunately a lot of people have no clue they don't know what they're doing.

Speaker 1: 5:22

And that was me. It was just okay replace the food in my house and I'll be fine. I still use the same toaster. For a couple of years after getting my diagnosis, I didn't even realize I had to replace my toaster Simple things like that. So, looking at your kitchen, looking at what needs to be replaced in your kitchen wooden items, things that will have gluten stuck in them. They need to be replaced. So all of these different things that we need to look at, you need to focus on and make sure that you're making these little changes so you could be years on into your journey and still getting gluten and you've just gone. Oh, my god, belinda, I still use the same toaster from before and there's gluten in that. It could be just a simple little thing like that that you need to change Knowing how to read labels, knowing how to go out and order safe, gluten-free food, knowing how to go to friends and families all of these steps are hugely important and empowering to live with celiac disease.

Speaker 1: 6:21

So make sure you educate yourself on all of those areas, because you can live a very full life with celiac disease. You don't have to stay at home and eat all the time. You don't have to miss out on traveling and exploring and making life wonderful by doing all of these things. I know of so many people who were told by their dietitian you'll never be able to travel again, living with celiac disease. That breaks my heart that someone that's so uneducated is sharing that information because they don't understand how to live with celiac disease. So be very careful with where you're getting your information from. Don't get me wrong there's some incredible dietitians out there that can support you, and if you can't find the right person for you, maybe that's me. I would love to support you on this journey, because that's what I'm here for, that's my passion, that's what I do. So make sure you go to my website after you've listened to this audio or watch this video, and learn how I can support you, because, at the end of the day, when you've got all this information, it does make the journey so much easier and so much more enjoyable, that's for sure.

Speaker 1: 7:30

Another thing to look at is if you are not feeling well yet after your celiac diagnosis and, like I said, it could have been years ago, it could have been recently what do you need to look at in your diet? Could it be that you've also got lactose intolerance? That was something that showed up years later for me and I feel so much better since cutting out dairy or just consuming lactose-free products. So lactose is something that can really mess with your gut and can make you have similar symptoms to if you were accidentally consuming gluten. So you might be thinking, oh, I accidentally got gluten, or I've accidentally consumed gluten and you've actually just eaten something that's got lactose in it. So if you can figure out that that's causing you problems, you'll be on top of your diet so much quicker and easier. So that's definitely something worth looking at as well.

Speaker 1: 8:25

If you don't know how to do that, make sure you're tracking your food intake, so something like a daily health tracker. There's one that I sell that's available on Amazon. So just Google my name on Amazon. Does that even make sense? Google my name, type in my name on Amazon and my daily health tracker will come up and you can track what you're eating, what your lifestyle is like, and you can start to kind of see what's causing problems for you. If you have been consuming lactose, you can kind of see within a period of time that it's causing you gut issues. So that's definitely worth keeping an eye on.

Speaker 1: 8:59

If you haven't done that, I always recommend that anyone that gets newly diagnosed with celiac disease starts tracking their food intake to see what else is causing problems. So for me, I had trouble with brown rice in the early days and it took me a little while to work that out. It was making me feel like I had eaten gluten. So once I cut out the brown rice, I felt so much better. It was just crazy how much of a difference not consuming brown rice made to my health and the way that I felt.

Speaker 1: 9:29

So again, track your food. Just even if you do it for a couple of months, to start to see where things are falling into place for you. That can be a big, big help. So once you've done that so you've cut out the lactose, if you need to, you're tracking what you're eating, you're seeing what other foods are causing issues, then I would start to look at what other supplements you can add into your diet. So I recently did an episode on probiotics. I recommend you go back and listen to that, because probiotics can really support the gut and help replace that good gut bacteria that you would have probably been struggling with while your body has not been tolerating gluten. So over the years of eating gluten, your bad bacteria is probably thriving in your gut and it's time to replace the good gut bacteria, and you can do that through probiotics. So go and have a listen to that episode after you've listened to this one, and learn more about the benefits of probiotics. And then you might want to look at do you need to add in some multivitamins, or do you need to increase your nutrition? What other areas of your diet and your lifestyle could you improve upon so that can make a big difference to the way that you feel.

Speaker 1: 10:43

The other thing that I think is so, so important is is having support. So having support from someone that either has celiac disease themselves or is an expert on celiac disease. If you've got that guidance and that support from someone that knows what they're doing, someone that's lived with that experience, you'll feel so much more confident by getting their guidance. So if you were to just rely on your doctor, who doesn't have any nutrition training which is pretty much most doctors, they do not get training on nutrition and they don't have an expertise on celiac disease they're probably not the best person to be able to guide you and support you on this journey. Yes, they're wonderful for keeping tabs on your blood and looking at your levels and all those types of things. Yes, absolutely Without a shadow of a doubt, highly recommend that you still tap into that resource. But if they're not able to guide you on this journey, then they are not the best person to look for. So once you've got that guidance and that support, you will be able to thrive with celiac disease so much quicker and avoid the mistakes that most people make.

Speaker 1: 11:58

And while I think of mistakes, make sure you go and grab my free guide 11 Mistakes People Make Going Gluten-Free After a Celiac Disease Diagnosis, because there's some really simple tips in that ebook that can change the way that you feel. So one of the things that caught me out was bacon. So I was eating bacon that my butcher had changed suppliers and they were injecting it with a wheat liquid so it was slowly making me sick and it was something that I was unaware of. So little tips like that things to look out for that you might miss. So make sure you go to BelindaWheelancom and grab yourself a copy of that and make sure that you're not making any of those mistakes and they don't catch you out like they catch many, many people out Now.

Speaker 1: 12:48

If you are brand spanking new to celiac disease, to the point of your doctor has just told you you've got celiac disease and you need to now go have a scope your doctor may have said to you you need to cut out gluten, when in fact, you still need to consume gluten until that scope is done. So please check with your doctor or your gastroenterologist that this information that they've given you is actually correct, because usually it's not. So you do need to be consuming gluten for that test to show up as a positive. So, yes, you've been given a celiac disease diagnosis from your blood test, but they will do a final confirmation, usually from doing a scope. So if that's you, please make sure that you continue to eat gluten. But first just give them a ring and just make sure that hey, I've heard for this to be a positive result, I need to keep consuming gluten. Is that correct, do you know? And the doctor might be like oh, I'm not sure and they'll check with the gastroenterologist and should get back to you. Or you can ring the gastroenterologist, find out from them what their procedure looks like and whether you need to be consuming gluten prior, because, like I said, most of them are not passing on this information.

Speaker 1: 14:07

And then the last tip is to look for support from your family and friends, and the best way to do this is by basically sharing with them what it is that you're going through. So talk to them about the emotional roller coaster, talk to them about the needs that you have, talk to them about why it's important that you eat gluten-free and it will make your journey so much easier, because I think so many people get caught up in what they have to do that they don't explain it to the loved ones in their lives and they don't get that support back. But when I see that my students and my clients share this information with their loved ones, they get so much more support than prior to doing so. And it makes a huge difference when those people around you are supporting you and I see it time and time again and, like I said, it makes a huge difference when those people around you are supporting you and I see it time and time again and, like I said, it makes the hugest difference because, as you know, when the loved ones in your life treat you the way that you need to be treated, it makes a huge difference to the way that you feel and the way that you show up in this world.

Speaker 1: 15:06

So I hope this episode has inspired you to learn more about celiac disease, to take control of your health and to move forward in a positive light with celiac disease. So if you're watching on youtube, make sure you hit that subscribe button, but if you're listening to the podcast on an app. Make sure you hit that follow button so that you never miss an episode. So thank you so much for listening to this week's episode and I look forward to talking with you again very, very soon. Have a great week. I'll talk to you soon. Take care, bye.