Hey gluten free fam!

So, you’ve heard about coeliac disease, and maybe you’re wondering if it could be the reason for some of the strange symptoms you or someone you care about are experiencing. It’s something both patients and health professionals can easily overlook, hence why it often is referred to as a ‘clinical chameleon’. Given there’s between 250-300 symptoms related to coeliac disease and it’s not placed on routine bloodwork, it’s clear we need to look outside the box, paying much more attention to the signs and symptoms.

They sneak up on you, and they don’t always scream, “Hey, it’s me - coeliac disease!” That’s why today, we’re diving into what these signs and symptoms might look like as well as suggesting some language and approaches to help either rule out or confirm you have coeliac disease. By the end, you’ll have a better understanding of what to keep an eye out for in the immediate, short and long-term.

As I say at the beginning of every podcast episode I record - I am not a health professional myself. I speak to many health professionals and experts in their field on the show but please always remember to seek out your own personal medical advice before you make any changes to your overall health or diet. What works for me and my guests on the show may or may not work for you.

This post won’t be packed with technical medical jargon. While we have tonnes of advice and feedback from health and industry experts, this will be coming from my own individual experiences and perspective. We’re keeping it real, keeping it chill, and we’re definitely of course keeping it all 100% gluten-free!

So, let’s take a deep breath, a big exhale and dig into the mind field that is… coeliac disease. If you’re not in the right headspace to take all of this in, trust me - I totally get it! I’ve Dr. Googled my symptoms before and it’s never helpful. It just leads to health anxiety.

If you’re in that headspace at the moment perhaps come back to this blog when you feel it’s right. On the other hand, if you’re feeling okay and in the right headspace then dive straight in! Ready? Let’s go gluten free fam…

How Do Coeliac Disease Symptoms Show Up?

Now, before we dive into common signs and symptoms of coeliac disease, let’s think for a minute about how diverse the body’s response can be when it’s trying to tell you something. Sometimes, it’s obvious; other times, it’s much more subtle. That’s the tricky thing with coeliac disease. The symptoms don’t always scream from the rooftops (although they did for me eventually - we’ll get to my own story later). You can have 100’s of symptoms, a number of them, a few or none at all. In this way, they can be like subtle nudges or be completely silent.

For example, if you’ve been dealing with ongoing tummy troubles, like bloating, diarrhoea, or constipation (yes, it can go both ways), you might wonder if it’s related. Some people feel a weird discomfort after eating, and it becomes so normal that they simply conclude it’s due to eating too much or eating something “off.” I know for myself and many I speak to dealing with symptoms pre-coeliac diagnosis - food poisoning can often be blamed as the culprit.

But it’s not just the digestive symptoms that raise red flags. Another common culprit blamed is IBS, which can often be misdiagnosed by health professionals when in fact the underlying cause is actually coeliac disease. Funnily enough I was diagnosed with IBS after my coeliac disease diagnosis.

There are people out there walking around with a variety of issues that they never thought could be connected to coeliac disease. Things like persistent fatigue, a rash that comes and goes (which can in fact be dermatitis herpetiformis) or even mouth ulcers can sometimes be part of the puzzle. It’s wild to think that coeliac disease can manifest in so many unexpected and unpredictable ways, but that’s the reality. Unfortunately though, it isn’t always brought up as a possibility.

The Digestive Clues You Can’t Ignore

*Pay attention to all of the potential coeliac disease symptoms*

Alright, let’s delve into what happens in your gut when coeliac disease decides to make itself known. First off, it’s not going to feel good. Whether you’re dealing with bloating, gas, diarrhoea, or constipation, it’s uncomfortable. It messes with your day, your routine (your toilet or someone else’s) and how you feel about almost everything. Let’s be frank - it sucks!

When these symptoms hang around for weeks, months or even years, it’s natural to think, “Maybe it’s just a bad food choice.” But at a certain point, if nothing changes no matter what you eat, it’s definitely time to pay attention. Coeliac symptoms might be subtle, yet persistent digestive issues can be a major signal that something else could be at play.

It’s also worth noting that some people feel nauseous after eating or notice that their weight is fluctuating, either gaining or losing without any significant changes to diet, exercise or lifestyle. These can all be genuine indications and part of the broader spectrum of symptoms.

What About the Non-Digestive Signs?

Okay, so we’ve covered the gut stuff. But, as we hinted earlier, coeliac disease doesn’t just mess with your digestion. It can also cause a bunch of other symptoms that don’t seem to have anything to do with your gut. So what else can coeliac disease do to our bodies?

Well, one of the big non-digestive signs is fatigue, low iron and anaemia. If you’re always feeling tired, no matter how much sleep you’re getting, it might be your body’s way of telling you that it’s not absorbing nutrients properly. Nutrient deficiencies are common in people with undiagnosed coeliac disease because their bodies can’t absorb vitamins and minerals as they should. “Why?”, I hear you say. “How?” Stick with me here gluten free fam. This is where we get a little into the weeds of the medical stuff.

Weirdly enough there’s these tiny microscopic things called ‘villi’ which line our small intestine. These villi actually have the essential job of absorbing a large percentage of nutrients into the body. When a person with coeliac disease eats gluten persistently these villi become damaged and cannot absorb the nutrients like they normally would. This leads to all sorts of symptoms due to malabsorption.

Everything from lactose intolerance, anaemia, osteoporosis, weight loss, joint pain, anxiety, depression, amongst around 250 - 300 other symptoms. I know this can sound scary. The good news is that in most cases once someone diagnosed with coeliac disease begins a gluten free diet, these villi can repair and begin absorbing nutrients back into the body.

Then there’s another organ we hardly ever pay attention to, even though it’s our body’s biggest one: our skin. Our skin can show us many things about our health and undiagnosed coeliac disease can definitely be one of them. On occasions, those with coeliac disease may develop a skin condition known as dermatitis herpetiformis. It’s itchy, blistery, and super uncomfortable.

Let’s also not forget about those horrible things so many suffer with: mouth ulcers. If you’ve got sores in your mouth that seem to pop up out of nowhere, that could be another clue that your body’s struggling with coeliac disease. I had endless canker sores and mouth ulcers pre-coeliac diagnosis. Thankfully they cleared up after going gluten free but I can tell you - they were not fun!

When Coeliac Disease Shows Up Differently in Kids

Now, let’s talk about the little ones. Coeliac disease in children can show up differently than it does in adults. Kids might not always be able to explain what’s going on in their tummies, but parents often notice that something’s not right. We all know our own kids the best so trust your strong parental instincts!

For some, it’s issues like delayed growth, irritability, or stomach aches. They might not gain weight as expected or have trouble hitting those growth milestones. It’s tough because, let’s face it, kids can complain about all kinds of things, so it can be hard to know if it’s just a phase, normal baby, toddler or child behaviour or if it’s something more serious like coeliac disease.

But just like with adults, the signs can many and varied. A child might have digestive symptoms like diarrhoea, bloating, constipation, distended belly, but they could also show up in non-digestive ways like tiredness or even behavioural changes. That’s why it’s super important to keep an eye on any persistent symptoms.

Looking at the Statistics: Coeliac Disease Numbers

Let’s talk numbers for a moment because when it comes to coeliac disease, the statistics in Australia are pretty eye-opening. Did you know that about 1 in 70 Australians have been diagnosed with coeliac disease? That might sound like a small number at first, but when you consider the entire population, that’s around 357,000 people who have been officially diagnosed. Yes - it’s shocking and you may now know why I bang on about coeliac disease and the gluten free diet so much if you didn’t already!

But here’s the kicker—research suggests that for every person diagnosed, there are at least five others who are living with the condition but haven’t been diagnosed yet. That’s hundreds of thousands of Australians who could be dealing with coeliac disease symptoms without even realising it. Around 80% of those 1 in 70 Australians are walking around right now without even knowing they have active coeliac disease. Pretty crazy, hey?

Surprisingly, it doesn’t stop there. Every year, more people are heading to their doctors to test for coeliac disease. In fact, recent studies estimate that over 80,000 Australians undergo a coeliac disease test annually. This includes people who are experiencing symptoms as well as those who might have a family history of the disease, which puts them at higher risk. It’s estimated by Coeliac Australia that you have a 1 in 10 chance of developing coeliac disease if you have a first degree relative living with the chronic autoimmune disease.

Coeliac Disease Statistics Australia — *Australia's own coeliac disease numbers tell us a lot*

With greater awareness and better testing methods, we’re seeing a growing trend of people wanting to know if they have coeliac disease or if their ongoing symptoms could be linked to gluten in another capacity. We're at the early stages with community awareness, but it's a positive sign that we're taking steps forward together.

What’s driving this increase in testing? Well, one big factor is the broader public awareness of gluten-related issues. More people are starting to recognise that common coeliac signs—like digestive problems or fatigue—could be connected to what they’re eating. Plus, as more information becomes available about how coeliac disease can affect your overall health, people are being encouraged to get tested if they’re experiencing any of the common symptoms.

These trends also highlight an important point: the earlier coeliac disease is diagnosed, the better. Left untreated, it can lead to more serious health problems down the track, like nutrient deficiencies, osteoporosis, miscarriage, infertility or even an increased risk of certain types of cancers.

So, if you or someone you know is thinking about getting tested, it’s definitely worth doing. The numbers tell us that there are still many Australians living undiagnosed, and with a simple blood test, they could be on their way to feeling a whole lot better.

Make sure when you’re discussing coeliac disease antibody testing with your GP, gastroenterologist or specialised health professional it’s important to not only have coeliac antibody testing carried out but also genetic testing. Having your genetic testing done at the same time is critical as you will know if you carry one or both of the genes which has the ability to activate coeliac disease in the future. If you don’t carry one or both genes you can be confident you will not develop coeliac disease in the future.

Please also note coeliac disease can develop at any age and at any time. We’re not exactly sure but it’s thought emotional or traumatic stressful life events, viruses, childbirth and environmental factors can be the trigger, but we still don’t know.

Throughout the testing process of coeliac disease please, please, please DO NOT STOP EATING GLUTEN! If you do go gluten free before testing for coeliac disease, you may have inaccurate results. Please speak to your healthcare professional about the right method for you and your own unique body, but during this time, do not stop eating gluten until you have tested for coeliac disease. You can read more about this here.

The Unpredictable Nature of Coeliac Disease Symptoms

One of the most frustrating things about coeliac disease is how unpredictable the symptoms can be. For some people, the signs show up suddenly, almost out of nowhere. You might feel completely fine for years and then one day, after a meal, you’re hit with uncomfortable bloating, diarrhoea, or stomach cramps. It can leave you wondering, “Where did that come from?” And that’s part of the challenge—symptoms can seem to appear at random, making it hard to pinpoint exactly what’s going on.

On the other hand, some experience symptoms that are consistent for years. They might deal with ongoing fatigue, skin rashes, or digestive discomfort without realising it’s related to coeliac disease. They might even get used to feeling unwell, thinking it’s just a part of their life. It might become their new-normal. I know it did for me until things got really bad.

For these people, the symptoms can be more subtle but still impact their day-to-day lives in significant ways. It’s easy enough to blame it on stress, poor diet or a mild case of irritable bowel when the signs persist over time and you can’t be blamed for that because the awareness around coeliac disease still really isn’t where it should be.

But here’s the thing - clear coeliac disease symptoms for one person might look entirely different for someone else. This is what makes coeliac disease so unique and tricky to diagnose. One group will experience extreme gastrointestinal symptoms, others might notice non-digestive issues like joint pain, miscarriage, low iron, headaches, or mouth ulcers, depression, anxiety and mood-swings.

It’s this wide variety of symptoms, which can come and go unpredictably, that often delays diagnosis. So, whether your symptoms have been building up over years or have appeared super suddenly, the unpredictability is a hallmark of the disease. It’s different for everyone, and that’s why it’s so important to trust your gut (literally), your body and seek answers if something doesn’t feel right.

Don't Treat the Warning Signals in Isolation

People can spend (and waste) years trying to treat individual symptoms without realising the underlying cause. You might try different diets, medications, supplements or lifestyle changes to fix issues like bloating, fatigue, or skin rashes, only to find that nothing really works long-term.

The truth is, this can be an exhausting—and expensive—cycle. People do this because it’s natural to want quick relief. We want to return to homeostasis - it’s a natural human urge. When a symptom flares up, you want it to go away.

Yet treating the symptoms without addressing the main cause is like putting a band-aid on a deeper wound. Yes, it might cover it up so you don’t see it at first, but under the skin an infection could be spreading, and potentially lead to other issues. This is definitely a situation where out of sight and out of mind isn’t an effective solution.

The downside is that you’re not giving your body a chance to heal properly. For example, if you’re constantly trying to manage digestive issues without recognising that gluten is the trigger, you’re essentially fighting a losing battle. Your symptoms may temporarily ease with medications, supplementations, infusions, or changes in diet, but they’ll come back because the real issue—coeliac disease—isn’t being addressed.

Over time, untreated coeliac disease can lead to more serious health complications, like we’ve discussed - malnutrition, bone density issues, infertility, miscarriage - all because the body isn’t absorbing the nutrients it needs. So, while it’s tempting to treat the symptoms as they come, the real relief comes from diagnosing and treating the underlying cause.

My Personal Journey with Coeliac Disease Symptoms

This all hits home for me gluten free fam. As I’ve briefly chatted about throughout this post, I live with coeliac disease myself and the symptoms and diagnosis were a bit of a crazy ride. At the beginning of 2020, our whole family caught a nasty gastro bug. My wife and eldest daughter recovered quickly, but I had lingering symptoms for months.

This ranged from everything from severe stomach cramps and pains, diarrhoea, constipation, joint pain, irritability, mood swings, anxiety, depression, mouth ulcers, extreme fatigue… the list goes on. When you Google ‘coeliac disease signs & symptoms’ I had a hell of a lot on that checklist. There were a seemingly endless range of painful issues and complications that felt like they were spiralling out of control. I honestly felt like I was on death’s door and all without an answer.

Eventually a friend of ours urged me to request coeliac disease serology. Low and behold, the results came back and they were off the charts! I had to go back on gluten as I had been gluten free for a short period of time out of desperation and without knowing what foods contained gluten or were gluten free. After around 6 weeks on a gluten challenge I had a gastroscopy where you have a general anaesthetic and a small tube with a camera placed down your throat into your small intestine to take a sample of your villi (those things we explained earlier).

The sample of villi are placed under a microscope and if they are damaged, coeliac disease is confirmed and you join the gluten free fam just like me! If you’d like to hear more about my diagnosis I go much deeper on Episode 117 of the podcast titled How My Coeliac Disease Diagnosis Occurred. As you can see - I empathise with you. I went through a hell of a journey to be diagnosed and I know how frustrating and confusing this time can be. But please know - you’re not alone.

Talk About Coeliac Disease Symptoms with Your Doctor

*Discuss coeliac disease symptoms with your GP*

Bringing up coeliac disease with your doctor, specialist or whichever health professional you choose can feel a bit daunting, especially if you’re not entirely sure what’s causing your symptoms. But here’s the thing—it’s your body, and you know when something isn’t right.

If you’ve been experiencing ongoing digestive issues, fatigue, or any of the coeliac disease signs and symptoms we’ve talked about here, it’s definitely worth having a chat with your GP. The key is to be clear and direct about your symptoms, and to mention that you’re concerned about the possibility of coeliac disease. This is especially applicable if you have one or several first degree relatives who live with the disease.

When you sit down with your doctor, don’t be afraid to go through everything you’ve been experiencing, even if it feels like too much information. Whether it’s bloating, diarrhoea, or skin rashes, these details matter because they can help your GP connect the dots. Explain how long you’ve been dealing with these ailments and that you’re worried they could be linked to coeliac disease.

Something that helps me is to make a checklist on your phone or written down on a note. This note can detail the symptoms you’ve been experiencing, topics to discuss, tests you’d like carried out, etc. Having this preparation done beforehand can relieve an amount of anxiety, rushing and potentially feeling pressured to remember everything that’s been happening to you.

Let’s be honest - when you’re dealing with any of the symptoms we’ve been discussing, we can feel exhausted, in pain, irritable and generally not at our best. I can clearly remember sitting in my doctor’s office hardly being able to get out a sentence pre-coeliac diagnosis as my brain fog and pain were that bad. I was a mess.

Another tip is to bring someone along - a partner, parent, friend, work colleague or someone who knows you well and can advocate and ask the questions for you, or simply be a sounding board and another set of ears. It’s amazing how much info we can miss or misinterpret at these times. Come prepared as best as you can!

Now, it’s important to know that not all GPs will immediately draw a connection between your symptoms and coeliac disease. They might look at the issues in isolation, especially if you have a range of symptoms that don’t seem directly related to digestion. This is not to throw shade at GPs or health professionals at all. They have so many health issues to be on the lookout for and coeliac disease is just ONE of those many things.

However, coeliac disease systemically lacks awareness in all aspects of society. Although diagnosis rates have improved, it still isn’t on routine bloodwork in Australia and the rates of diagnosis definitely aren’t where they should be. It can take a lot of prompting and advocating on your own part to be tested.

This is where you need to work hard on being your own best advocate. As we said earlier, no one knows truly what’s going on in your own mind and body better than you. If something doesn’t feel right persist until you get an answer.

If your symptoms are persisting and you’re not seeing improvements, don’t hesitate to bring up testing for coeliac disease. Testing is a relatively simple process, and it can give you peace of mind or, at the very least, rule out coeliac disease as a potential cause.

One of the most empowering things you can do is ask your doctor directly about testing. If you’re worried that your symptoms aren’t being fully addressed, you can say something like, “I’ve been doing research, and I’m wondering if this could be related to coeliac disease. Can we do a blood test to check for it?” This is your right as a patient and someone who is diligent about their own health.

That approach shows that you’re taking your health seriously and that you’re informed about your options. Most GPs will be more than willing to explore this path, especially if you’ve been dealing with long-term symptoms. Don't accept no for an answer.

If you aren’t satisfied with your GP or feel that they aren’t listening to you and your needs, don’t be afraid to get a second opinion. Again, this is your health at the end of the day. It’s important that you’re getting the healthcare you rightfully deserve.

For years I would sit in a doctor’s office and expect them to know everything wrong with me without communicating how I truly was feeling. That defeats the purpose of your appointment. Let it all out. Make a longer appointment time if needed to make sure you feel heard and understood. You should feel that both your GP and you are working together, not in isolation.

How to Test for Coeliac Disease

If all of this is sounding familiar, you might be wondering, “How do I know for sure?” Well, that’s where testing comes in. First off, it’s important to chat with your doctor. They’ll likely start with a blood test to check for antibodies that are commonly elevated in people with coeliac disease.

If those come back positive, the next step is usually a biopsy of the small intestine to confirm the diagnosis. It sounds like a lot, but it’s worth it to get some clarity on what’s going on. This can vary with children so please consult with your GP, gastroenterologist and paediatrician for the correct path forward for you or your child.

Surveying Blood Tests as an Option

Blood testing is aimed at identifying coeliac disease. It measures the level of a specific antigen in a blood sample produced from gluten. In young children, blood testing may be less accurate due to fluctuation in antibody concentration. This can be repeated three months later. The antibody blood test is a great gauge to see how your levels are tracking and, just as importantly, having the genetic testing carried out to see if you're carrying one or both of the coeliac genes.

With this being said, as I understand from personal experience, the blood test is not bullet-proof. It won't be your definitive guide. Do not rely on this as your sole approach to diagnosis. There is another critical step you must take to have clarity on the issue.

Undertaking Small Bowel Biopsy for Clarity

A gastroscopy is currently the gold standard for diagnosis within Australia and a necessary process when testing for coeliac disease. It is a very quick and painless procedure, carried out by having an endoscopy (a small tube placed down your throat and into your small intestine) and takes around 15-20 minutes under either light sedation or general anaesthetic. It gives a gastroenterologist a chance to examine bowel tissue by sampling a number of small samples (biopsies).

An expert pathologist then examines the specimen under the microscope to detect damage to the villi. The diagnosis for coeliac disease must be confirmed if biopsies prove the illness. If your results return negative results, even though you do present with symptoms when ingesting gluten, you may actually have something called non-coeliac gluten sensitivity. This means you have a certain level of intolerance to gluten versus coeliac disease itself.

Living Gluten-Free After a Coeliac Disease Diagnosis

navigating gluten-free life after coeliac diagnosis — *A coeliac diagnosis opens up many gluten-free possibilities*

So, let’s say you’ve gone through that entire the process, and you’ve got your diagnosis. You’re officially newly diagnosed coeliac and a member the gluten-free fam - welcome!

At first, it can feel overwhelming. You’ve got to start reading labels, asking heaps of awkward questions at restaurants, and being more mindful of what’s in your food. But trust me, it gets way easier with time. Plus, with more and more people going gluten-free, there are loads of resources and products out there to help make the transition smoother.

Living a 100% strict adherence to gluten-free diet is not just about cutting out wheat, rye and barley and oats - yes I’m sorry gluten free fam oats can’t be deemed gluten-free within Australia just yet - check out our blog post on oats to learn more about this confusing subject!

Living gluten-free is all about making conscious decisions every day. Whether you’re at home cooking or out with friends, it becomes a part of your daily routine. Don’t stress, we've got you covered and there are hundreds of thousands of us in Australia and millions around the globe who you can lean on for advice and support. Never feel like you have to go through this journey alone - we’re here for you.

Managing Coeliac Disease Long-Term

Once you’ve got into the swing of things, managing coeliac disease becomes part of everyday life. Sure, it requires a bit of extra effort, but with a bit of planning, it’s totally doable. Plus, sticking to a gluten-free diet helps your body heal from the damage caused by gluten, and over time, you’ll start to feel better.

Many people find that their symptoms improve dramatically once they eliminate gluten from their diet. Some people find this happens quite quickly while for others it can take a little longer. Remember - don’t compare your symptoms to someone else. Your own coeliac disease journey is yours & yours alone. With time, you’ll find what works for you and just as importantly, what doesn’t.

It’s worthwhile flagging at this point that flare ups and symptoms can return in particular ways. Depending on your condition, varying levels of cross contamination in gluten containing foods may lead to various symptoms.

It can be extremely frustrating attempting to find the cause of cross contamination. However, if this is a regular occurrence and you’re finding symptoms aren’t improving or you’re developing new symptoms that don’t feel right please consult with your medical professional to investigate further.

Now that you know the risk factors for coeliac disease and management principles that keep you safe and healthy, you no longer have to play a guessing game.

And here’s an interesting fact: Many people are turning to gluten-free diets, even if they don’t have coeliac disease, because they believe it’s better for their body. It’s imperative you rule out coeliac disease before making this change because as I found out the hard way - once you go gluten free your body will begin to react and cause symptoms once you ingest gluten back into your body. Just because something is gluten-free doesn’t mean it’s healthier.

Unfortunately the gluten-free trend around a decade ago caused many celebrities to share gluten-free diets as the biggest trend. While this helped coeliac & gluten free folk with the amount of product choices available, it also damaged the reputation of a gluten-free diet.

Rather than focussing on a gluten-free diet as a medical necessity for those of us living with coeliac disease it is even now seen as a choice by many in society. This is definitely an area we’re doing our best to change the perception on!

Final Thoughts on Coeliac Disease Symptoms

We’ve covered a lot here. From common symptoms of coeliac disease to how to test for it and what life looks like after a diagnosis, it’s clear that while this condition can be really tricky (especially when newly diagnosed) it’s definitely manageable.

Whether you’re dealing with digestive issues or those more subtle non-digestive signs, the key is to listen to your body and talk to your doctor if something doesn’t feel right. Also if you have a relative or several with coeliac, definitely bring up testing with your health professional.

For anyone living with coeliac disease, the gluten-free journey is one of learning, adapting & growing. With a little bit of patience and a lot of support, it’s something that becomes second nature.

You’re not alone gluten free fam. There are so many people out there navigating the same path. The gluten free community is full of resources and tips to make the journey a bit easier. We're here to help you along this crazy gluten free ride. You’re on the right track. Keep going. Keep advocating. Stay curious and stay strong. We got this!

One chat at a time.

Discussing Signs & Symptoms of Coeliac Disease