No products in the cart.
If you haven’t taken the Monash University Low FODMAP patient course, I highly recommend it. But as I started the course myself, I found myself gritting my teeth involuntarily when it came to a certain line. “It’s crucial to get a medical diagnosis and rule out other conditions first.”
While it’s not that I disagree with that advice – in fact, I completely agree – it was the fact that my experience of getting to that point was not quite as simple as the advice might lead you to believe. In fact, as someone with multiple chronic conditions, it turned out to be very complex.
As the course points out, IBS disproportionately affects women, particularly those under 50. This is also a group that has historically been underrepresented in medical research [1] and, in many cases, under-investigated when presenting with complex or overlapping symptoms.
I’m part of that group.
Through childhood, my symptoms were mild enough to be easily dismissed. In my early 20s, I began to notice more clearly that my digestion didn’t seem to function the same way as other people’s. Then, quite suddenly, things escalated.
I experienced unexpected weight loss, persistent diarrhoea, dizziness, a very high heart rate on standing, and a general sense that my body wasn’t recovering properly after what should have been a straightforward illness. This worsening began after a bout of tonsillitis treated with antibiotics.
At the time, I didn’t have a clear explanation. I only had a growing list of symptoms, and none of them seemed to fit neatly into any one diagnosis.
IBS and POTS are both considered diagnoses of exclusion, meaning there isn’t a single definitive test that confirms them immediately. In practice, that often means the diagnostic process can take time, sometimes a lot of time, while other conditions are gradually ruled out, all the while, the patient has to struggle through and suffer with low energy, pain and the challenge of trying to advocate for their needs.
I found myself going back to my GP again and again, trying to make sense of it all. I’d already received ultrasounds, blood tests, and all kinds of tests, and they often seemed to show little wrong. There was one specific visit I recall where he listened to my abdomen with his stethoscope and his words were a vague “yes, your abdomen sounds very active”, but I was surprised when I heard his next suggestion: a low-dose antidepressant to help settle my gut symptoms.
I left that appointment feeling disappointed and frustrated. Was this really the best the doctors could do for me? This doesn’t explain what’s happening or why.
At that point, I felt stuck and increasingly overwhelmed. On one hand, I worried something more serious might be going on… the fatigue, dizziness, and pain didn’t feel minor. On the other hand, the tests I had done and the reassurance I was receiving didn’t give me any clear explanation for what I was experiencing.
Eventually, I reached a point where I felt I had no choice but to start trying to understand it myself and I began looking into diet as a possible factor. I talked to my family about their experiences with gut issues, and I spent a lot of time reading and trying to make sense of patterns in my own symptoms.
From there, I started experimenting slowly — first with gluten-free and dairy-free diets, then low fructose, and eventually a low FODMAP approach. Over time, I started noticing clear patterns between certain foods and how I felt. For me, this included FODMAPs and dairy, and also dietary nickel that triggered my dyshidrotic eczema.
Eventually, over years, I was referred for further testing and investigations, which largely confirmed what I had already come to know.
“What Does It Take To Get Diagnosed Around Here?”
One of the most frustrating parts of this process was the feeling of being dismissed and ignored by health professionals. My logical brain tried to make sense of it; telling myself that clinicians are often overworked, and that cases like mine may not always present as urgent at first glance. But emotionally, I felt broken. I kept wondering what level of severity my symptoms would actually need to reach before they were escalated appropriately.
Did I have to faint in a doctor’s office?
In quieter, more overwhelmed moments, my inner voice would even go as far as: “if I died, that would sure show them.”
In a way, it did take something significant that eventually shifted the trajectory.
It wasn’t until my sister was diagnosed with stage 4 bowel cancer that the level of urgency around my own symptoms changed dramatically. In fact, I’ve never seen one of my doctors literally jump so quickly into action, and from that, I was fast-tracked for further testing — including stool testing and a colonoscopy — in a way that felt very different from my previous years of care. That contrast has stayed with me.
Over time, my experiences have significantly affected how I navigate healthcare. From the outside, I can understand how I may have appeared back then: a young woman with generally normal blood test results, who seemed physically well but was anxious about her health.
Diagnosis didn’t always seem to carry much weight in my experience of the system. I can still hear the words of one doctor saying, “Even if you got a POTS diagnosis, it’s not like it’s something that’s going to kill you.”
But in reality, it was never about life or death for me. It was about being able to take charge of my own health.
More than anything, each diagnosis brought something important: validation. Validation that I wasn’t imagining my symptoms, that I really was unwell, and — most importantly — that there were actually specific things I could do to improve my quality of life.
I don’t share this to suggest that doctors don’t care, or that medical testing isn’t important; it absolutely is. I share it because I think there’s often a gap between what diagnosis looks like in guidelines and training, and what it actually feels like when you’re living with ongoing, multi-system symptoms and trying to figure out what’s going on over time.
What I learned from this experience
If I had to put into words what I wish I understood earlier, it would be this:
Persistent gut symptoms deserve proper investigation, whether they’ve been present for a short or long time — especially when there are clear red flags like unintentional weight loss, blood or mucus in stool, or significant changes in bowel function. This includes considering and ruling out things like allergies, intolerances, malabsorption issues, coeliac, IBD, and other gastrointestinal conditions where appropriate.
Conditions like IBS — and in my case, overlapping autonomic issues such as Postural Orthostatic Tachycardia Syndrome — are often diagnoses of exclusion. In hindsight, I’ve come to see that things are rarely isolated, and that different conditions can influence each other in ways that aren’t always obvious at the beginning.
For example, when my gut symptoms improved after identifying dietary triggers and removing dairy, I also noticed improvements in my POTS symptoms, likely because I was no longer dealing with constant gastrointestinal stress and fluid loss. Experiences like this taught me that while patience is often needed in the diagnostic process, having a practitioner who can help connect the dots is also important — and not every clinician will have the time or experience to do that fully.
I also learned that patients often notice patterns in their own bodies before a clear diagnosis is reached. That observation isn’t something to dismiss — it can be an important part of the overall picture. For me, writing everything down became a useful way to track those patterns and communicate them more clearly.
And perhaps most importantly, I’ve learned that when something doesn’t feel right, it’s worth continuing to ask questions and seek further review over time, even if that means seeing more than one doctor along the way.
For me, this doesn’t mean self-diagnosing or ignoring medical advice. It means staying engaged in your own care, especially when symptoms are persistent, complex, or changing.
When symptoms don’t add up (questions to help guide review)
If you’re dealing with ongoing or unexplained symptoms similar to mine, it can help to make sure the key “red flag” areas have actually been considered, not just assumed away. I’ve had more than one doctor reassure me I wasn’t dealing with certain issues when, in reality, they had never asked the questions that would have uncovered them. At the time, my symptom list felt so long that I didn’t always know what was important to mention.
You might want to ask your doctor:
- At what point would a specialist referral be appropriate if symptoms persist or worsen?
- Have my symptoms been assessed for unintentional weight loss or changes in nutritional status?
- Has blood or mucus in stool been properly investigated rather than monitored?
- Are my bowel habit changes (diarrhoea, constipation, or alternating patterns) consistent with a functional diagnosis, or do they need further work-up?
- Could ongoing fatigue, dizziness, or exercise intolerance suggest a systemic or nutritional issue rather than only a gut disorder?
- Has rapid heart rate on standing or positional changes been assessed for autonomic involvement (such as POTS)?
- Could recent infections or antibiotic use have triggered longer-term gut or microbiome changes?
- Have nutrient deficiencies (iron, B12, vitamin D, etc.) been checked and explained in context of symptoms?
- Is there any family history of bowel disease, autoimmune conditions, or early cancers that should change how thoroughly symptoms are investigated?
- Have inflammatory or structural causes (not just functional ones) been reasonably ruled out?
Final note
Everyone’s health journey looks different. Some people get answers quickly, while others go through a longer process of investigation and pattern recognition before things make sense.
If you are in the second group, you’re not alone in that frustrating experience.
The best thing you can do is keep asking questions, keep tracking your symptoms, and keep advocating for clarity — while seeking out the medical professionals who really want to help you do the same.
English