Why So Many IBS Patients Go Undiagnosed And How to Advocate for Yourself in the Clinic

“At least two-thirds of individuals who meet IBS criteria never receive a formal diagnosis.”

For a long time, I found myself in a space that many patients quietly live in but rarely talk about.

I have inflammatory bowel disease (IBD) and I’m fortunate to be in remission. But like many IBD patients, even without active inflammation, I still experience bloating, discomfort, and unpredictable bowel habits. Symptoms that feel almost identical to irritable bowel syndrome (IBS).

And that raises a bigger issue: What happens when your gut symptoms continue but don’t clearly show up on tests?

The Gap Between Symptoms and Diagnosis

IBS is classified as a disorder of brain-gut-microbiome interaction, meaning symptoms are real but not always tied to visible structural disease. It’s characterized by abdominal pain, bloating, and altered bowel habits but diagnosis relies on symptom patterns, not on objective biomarkers, imaging or lab results.

A large national survey of over 88,000 U.S. adults, published in Clinical Gastroenterology and Hepatology and led by Dr. Lin Chang of UCLA’s Vatche and Tamar Manoukian Division of Digestive Diseases, found that while many individuals met clinical criteria for IBS, only a fraction were formally diagnosed. Even more concerning, among those who sought medical care, only about one-third received a diagnosis.

That leaves a majority of patients with such nonspecific gut symptoms in limbo, experiencing distressing symptoms without a clear explanation or effective therapy.

Why a Diagnosis Matters More Than You Think

Not having a diagnosis isn’t just frustrating, it can shape your entire care experience.

Without a clear label:

• Treatment options may be limited or denied and often have side effects
• Patients often undergo repeated, unnecessary testing
• Symptoms may be dismissed or minimized

Research shows that undiagnosed IBS is associated with markedly increased healthcare use, but not necessarily better outcomes. In other words, patients keep searching for answers but often don’t find them.

Disparities in Who Gets Diagnosed

The study also highlights an important reality: diagnosis is not equal across all groups.

Women were more likely to receive an IBS diagnosis than men. Black patients were significantly less likely than white patients to be diagnosed, even when they reported similar symptoms and sought care at similar rates.

This suggests that IBS diagnosis isn’t just about symptoms. It’s also influenced by:

• Communication between patient and provider
• Cultural/racial perceptions of illness
• Biases about who is “expected” to have IBS

In some cases, IBS is still incorrectly viewed as a condition that primarily affects white middle aged women, an assumption that can delay or prevent diagnosis in others.

When You Don’t Fit One Box

This is where my own experience comes in.

Even with IBD in remission, symptoms don’t always disappear. Many patients develop what’s often referred to as IBS-like symptoms in remission, which fall under the broader category of disorders of brain-gut interactions.

But these symptoms can be overlooked because:

• Inflammation is no longer present
• Providers may focus only on IBD activity
• Symptoms are attributed to stress without further discussion

That creates a disconnect because whether it’s IBS, post-IBD IBS, or another brain-gut condition, the symptoms are still real and have a major impact on a patient’s quality of life.

Why Patients Don’t Always Speak Up

Many individuals don’t seek care because they feel:

• Symptoms aren’t severe enough
• They can manage it on their own with unsubstantiated supplements
• Or the issue will resolve over time

Even among those who do seek care, discomfort discussing symptoms or uncertainty about how to describe them can be a barrier. That’s where self-advocacy becomes essential.

How to Advocate for Yourself in the Clinic

1. Be Clear and Specific

IBS is diagnosed based on symptom patterns. The more clearly you describe:

• Frequency
• Triggers
• Severity
• Association of abdominal pain and discomfort with bowel movements

…the easier it is for your provider to recognize the condition.

2. Ask Direct Questions

Instead of waiting for a diagnosis, try asking:

• “Could this be IBS or another disorder of gut-brain interactions?”
• “Do my symptoms meet clinical criteria?”

3. Don’t Stop at “Everything Looks Normal”

Normal test results don’t mean nothing is wrong.

IBS is a functional condition, because symptoms arise from a compromised functioning of brain gut interactions. It also means symptoms exist even when standard tests don’t show abnormalities.

4. Advocate for a Diagnosis

A formal diagnosis provides:

• Validation
• Direction for treatment
• Access to therapies

Without it, patients often stay stuck in cycles of testing without answers. Repeated testing for SIBO with breath tests is a good example.

5. Address the Mind-Gut Connection

IBS involves communication between the brain, gut, and microbiome.

That means management may include:

• Diet adjustments
• Stress regulation
• Gut directed behavioral therapies

6. Speak Up, Even If It Feels Uncomfortable

If something doesn’t feel right, say it.

You can respectfully push the conversation forward with statements like:

• “These symptoms are affecting my daily life.”
• “I’d like to explore this further.”

Final Thoughts

The biggest takeaway from this research isn’t just that IBS is underdiagnosed.

It’s that patients are doing their part, seeking care, reporting symptoms, and still not always being heard.

But here’s what I’ve learned:

• You shouldn’t need abnormal test results to justify how you feel. There are many medical disorders which fall into the same category
• You don’t need a perfect diagnosis to start advocating for better care.
• And in conditions like IBS, where diagnosis depends heavily on communication, your voice is one of the most important tools you have.