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You Have Celiac Disease - Now What?

Updated: Apr 18, 2021

This article is for you if you have just been diagnosed with celiac disease. No doubt you have been online and searching and looking for answers and trying to work out how you're going to navigate this new way of life. So I want to make it really simple for you and give you some tips straight up.

This article is transcribed from my Podcast. If you would prefer to listen, you can do so here.

Basically this is a journey and this is going to take you a little bit of time to work out how you're going to live your best life as somebody with celiac disease. So, it's not all doom and gloom. It's not as bad as what you are probably thinking it is right now. And it definitely gets easier. So if you've just been diagnosed with celiac disease, and you have been told that you were going to have an endoscopy or colonoscopy, then I want you to know that you need to stay eating gluten for the time being. Unfortunately, many, many people get told when they get diagnosed with celiac disease, that they need to cut out gluten, but they get told this before they have their appointment to get the scope done. And what that means is sometimes you won't get an accurate reading, so you actually need to keep consuming gluten.

So if you have been told to cut out gluten, I urge you to jump on the phone to your gastroenterologist and just double-check that, that's what they want you to do, because I'm pretty sure your doctor or your main primary caregiver has given you the wrong information. It happens so often. So yeah, I recommend that you jump on the phone, make that phone call and just check because I don't want you to be going gluten free for say six weeks or eight weeks, and then you have your appointment and they turn around and tell you that sorry, yeah, you were supposed to still be eating gluten..... because you are not going to want to go back on gluten for another six to eight weeks for another check. You just will feel so much worse. It's actually harder to cut out the gluten, and go back on it than it is to just stay on it for a little bit longer. So yeah, just make sure that that's what's happening.

Some people don't even actually have to have the scope anymore. There are some countries that aren't even doing that they're just going with the blood test, so everyone will be different, but let's just go with that. I hope that makes sense?

If you have been given your 100% diagnosis and you are good to go within gluten free , then that's your opportunity to start healing and to start feeling better. So that's good news. When I look back to, when I got diagnosed, I was so relieved. Oh my goodness. I was (as silly as this sounds), I was actually happy to get my diagnosis. I wouldn't say over the moon because , my GP, he had actually said to me, this was after seeing about seeing about five or six doctors up to this point. But my GP actually said to me, prior to my diagnosis, he said, "I think you've either got Crohn's disease or celiac disease. And let's hope it's celiac disease because that's much easier to deal with than what Crohn's is".

So when I did get my diagnosis, there was that little bit of relief because he'd kind of built it up that, having celiac disease, that was the better one of the two options. So yeah, but when I did get diagnosed, I was told, yeah , you just need to cut out gluten and that's it. Basically you have to live gluten free for the rest of your life and there's no cure for this. And that's the only way to kind of deal with it.

That's all the information I was given!!

Now this was over a decade ago and I did have to go and see a gastroenterologist and lo and behold, same thing. I had actually cut out gluten. So it was a nightmare to have to go back on the gluten. And I bawled my eyes out and refused to do it. And I was basically told, well, you know what? Your blood levels are that high it's confirmed that you're definitely celiac. And so I didn't go through with it then, but I did have an endoscopy and a colonoscopy last year, early last year, because some gluten was sneaking into my diet and my Doctor just wanted to make sure that there wasn't any sort of damage going on. And yeah, it was fine. So, if you have to have the scope, please don't be scared. It's nothing to be scared of . It doesn't hurt. You don't feel anything. There's nothing afterwards, you know, you don't have any pain or anything afterwards. Well, I didn't, I hope no one suffers from that, but honestly, I wouldn't have even known.

So anyway, so let's go with your cutting out gluten. What does that mean? So have you looked at where gluten is? Have you been given some information you might've been told to go see a dietician or a nutritionist? If you haven't seen them yet, let's keep it really simple.

You need to cut out Wheat, Oats, Barley and Rye . Now, even if you are in a country other than Australia, I still recommend you cut out oats. Here in Australia, we have really, really strict rules with what is allowed to be classed as gluten free . Now, nothing in Australia can be called gluten free if it has oats in it. Some countries call their apparent safe oats, uncontaminated oats or gluten free oats. We can not have any labeling on our oats here in Australia to say they gluten-free written on them because the Australian Coeliac Society teaches us that there are no safe oats that we can consume. And here in Australia, if you have celiac disease and you want to eat oats, you actually need to do an oats challenge. So that's something, if you've just found out , you've got celiac disease, you could talk to your GP or your primary caregiver about doing that so that you don't have to go in and try and do that later. That's something I never did. I was never told about that or given that opportunity. But I think in the early days, if I had been given the opportunity to do an oats challenge, then I would have absolutely done it.

There are so many recipes that call for having oats in them and that it would just make life so much easier to be able to bake with oats and, you know, have them in simple treats and things like that. If you get the opportunity to do an oats challenge, by all means do it. But you know , if you're in another country where they say the oats are fine and safe and all the rest of it, a lot of people with celiac disease still react to oats and they can be doing damage. I hear from so many women in America that do struggle with oats because they're told they're safe and they're gluten free, then they think it's okay. So it's about learning. Well, what is safe for your body? In the beginning, it's definitely worth cutting out oats along with the wheat, the barley and the rye . So you might be thinking, well, yeah, that's easy. You know, I don't eat that much bread or I don't need that much, baked goods or whatever. But unfortunately when you start to look, there are so many foods where these ingredients are hidden, even things that you wouldn't even think of such as ice cream chocolates , gravies and sauces. Even bacon can have wheat in it. They actually inject a wheat liquid into a lot of Bacon's .

How are you going to find these ingredients? It's important to read food labels and it's about being very, very conscious of what you're consuming. It's important to learn about cross-contamination also . I really want you to learn as much as you can about cutting out these ingredients and looking for where they are hiding in your food.

There's a lot of mistakes that people make as well when it comes to first going gluten-free and even years on, you know, I talk to people all the time about having celiac disease and, they're still struggling and there's so many mistakes that we can very easily make. I've actually put together a little free ebook called 11 Mistakes People Make Living Gluten Free. You can download a copy here. You can go ahead and grab your self a copy and just make sure that moving forward, you don't make these mistakes because if you can ensure that you're not making those mistakes, you're going to be well on your way to feeling much better, much sooner.

Now, another thing that we don't get told by our doctors or our gastroenterologists is many people that get diagnosed with celiac disease have so much damage done to their villli, which is in your small intestine, that you may have, what's called secondary lactose intolerance. When I first got diagnosed, I felt rubbish for so long, and I still felt like that I was getting the same sort of symptoms and side effects from eating gluten. But I I knew that I'd cut out the gluten so I couldn't work out what was going on. Well, anyway, it turned out that it was actually this lactose intolerance because my body was so damaged. Every time I would eat something that was a dairy product, it was just going straight through me and it was just making me feel horrible. So now what I do is I teach my clients to cut out the dairy. Just until your body heals. Dairy is actually something that we do react to when our body is highly inflamed and it is extra inflammatory. If you cut it out just till your body is feeling better and then slowly reintroduce it back in, you should feel a lot better, a lot quicker.

I highly recommended that you go through your pantry and go through all your food and just learn what it is that you've already got in your house that you can eat, because you might be surprised. A lot of the food that you've already got at home is probably already naturally gluten free or in other words it isn't labelled as gluten free but when you read the label, it is gluten free by ingredient We don't have to just purchase food products that are labeled gluten free , which is great. It is expensive to buy gluten free labelled food, however I think we are very lucky that there are companies that are quite happy to provide these foods for us and ensure that their manufacturing processes are safe for us. So in a way, I guess it makes me more grateful that there is so much more available now than what there was even 10 years ago. We do have to be grateful for those products that we can just grab and go and we know that they're safe, but then there's other foods that aren't labeled gluten free , but they are by ingredient, which means that doesn't say gluten free on the label. But when you go through the ingredients, it doesn't say any of the gluten containing ingredients. We can actually consume those. If there's no "may contain gluten" statement. Now, in my course, Ultimate Celiac System, I actually go through labeling very thoroughly and teach you completely how to read a label so that you can 100% safely go out grocery shopping and ensure that you know that what you're buying is safe for you. It's definitely worth checking out. This is perfect for you if you've just been diagnosed with celiac disease, it's very thorough and it's got everything that you will need to know to absolutely thrive living with celiac disease. It's basically the course that I wish that I could have gone through when I first got diagnosed. So yeah, I've covered everything that I think anyone that's been diagnosed with celiac disease needs to know from day one. Learn more here.

I hope that's a really good start for you. If you have any questions, please send me a DM on Instagram. I also share lots of great content over on Instagram including tips for living with celiac disease, food finds, and lots little tidbits that can help you on your journey.

So I hope this little intro has helped you. And like I said, send me any questions that you've got because I love hearing from my followers and fellow celiacs . Please reach out to me if there's anything further that you want to know, and next week I'm going to be sharing another artcicle for you. This is the first of a little bit of a series for those of you that have just been diagnosed with celiac disease. I look forward to sharing more with you next week and helping you along your journey. Thanks so much for reading.


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