What is IBS and Why It Is Often a Placeholder Diagnosis

If you’ve ever been told you have IBS and walked away feeling confused, dismissed, or still sick, I want you to know you’re not alone. 

IBS is a real diagnosis — but for many people, it’s also the label given when we don’t yet understand what’s actually irritating the gut. Today, I want to talk about why IBS is so commonly diagnosed, what it really means, and why it often becomes a stopping point when it should be the beginning of deeper answers. My goal here isn’t to criticize doctors — it’s to help you feel empowered to keep asking questions if you’re still not feeling well.

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Transcript

Purpose And Disclaimer

Carrie Saunders 0:00

Quick reminder before we get started on this episode. This podcast is based on my personal experiences and isn't medical advice. If you've ever been told you have IBS and walked away feeling confused, dismissed, or still sick, I want you to know that this is very common. IBS is a real diagnosis, but for many people it's also the label given when we don't yet understand what's actually irritating the gut. Today I want to talk about why IBS is so commonly diagnosed, what it really means, and why it often becomes a stopping point when it should be the beginning of deeper answers. My goal here isn't to criticize doctors, it's to help you feel empowered to keep asking questions if you're still not feeling well. Let's dive in. Welcome to the Gluten Free Engineer Podcast. I'm your host, Kiri Saunders. In 2011, I was diagnosed with celiac disease, a moment that changed everything. But I was determined not to let it hold me back. With my two engineering degrees, I set out to reverse engineer the gluten-free lifestyle, breaking down recipes, safety tips, travel hacks, and everything in between to rebuild a life I love. Whether you have celiac disease, gluten intolerance, or simply choose to live gluten-free, this podcast is for you. Join me each week as we simplify the gluten-free lifestyle, make it fun, and prove that you don't have to miss out on anything. Welcome back to the show. Today we're talking about what IBS is and what to do if you get that diagnosis. So if you're not already familiar with the term, IBS simply stands for irritable bowel syndrome. It basically is that something is bothering your gut. It's usually diagnosed based upon patterns of symptoms and not a specific test necessarily. And it does not identify a single cause of what's causing you issues. It explains how your gut's behaving, but not why. I was actually diagnosed with this, and we'll go into this in a little bit more detail a little bit later in this episode with IBS, about five years before I was diagnosed with celiac disease. So if you're diagnosed with IBS, you need to be asking more questions. That's the whole goal of this podcast episode, is to help empower you on what questions you might be asking it. Because it just simply states that the gut is irritated, sensitive, or reactive to certain feuds, but it doesn't tell us what's actually causing that irritation, and we need to figure that out so that you can feel better. So why is IBS so commonly diagnosed? Many times digestive systems overlap across many conditions, so it can be very hard to determine what is actually causing the bowels to be irritated. Testing often rules things out instead of pinpointing a cause, too. And time constraints and limited tools play a role in getting this diagnosed properly. I don't believe IBS is given because doctors don't care, in most cases at least. I think it often is given because the system doesn't always make it easy to keep digging. I feel like I do have a case which we'll talk about where the doctor should have really, you know, done a little bit more digging than he did, but it's many times a catch-all because the doctor can't figure out what's going on with you. So that's where I want us to be cautious. IBS many times, and in my case, can become the end of the investigation. We don't want it to be the end of the investigation. We want it to be the reason why we keep digging to figure out what is causing new issues so that you can feel better. Many times treatment focuses on managing symptoms and not understanding those causes. And patients are often told to avoid stress or just live with it. For many people, IBS becomes a label that says we see your symptoms. It's not a label that says we understand them. That's where we want to get down to is how do we understand it? I was actually diagnosed with IBS about five years before I was diagnosed with celiac disease. At the time, I trusted that diagnosis. I didn't know to ask more questions. I was given medication to help manage my symptoms, but I was never tested for celiac. I even saw a gastroenterologist. Even though specialists can make mistakes. Looking back, it's very frustrating. Not because I believe my doctor had bad intentions, but because the deeper question of why is my gut irritated was never explored. IBS became the label and the search for answers stopped. And during that time, I stayed sick longer than I needed to be. I really got sick in those next five years. I was taking care of my first two children who were about 19 months apart, and then also got pregnant with my third in those next five years. And it was really hard on my body to have little kids running around to then get pregnant and then be nursing and depleting all my nutrition for my kids when I was already depleting it because I was celiac and didn't know it. So gluten issues and celiac can get missed under an IBS label, just like it did for me. Celiac testing is not always automatically done. We need to make sure we're also testing at the right time. And we have some episodes on this about timing for your tests. We mean to make sure the general consensus is you need to be make sure you're having gluten for a long time, months, before you do the testing, too. And non-digestive symptoms are often overlooked many times, and removing gluten early can affect results. For me, I removed gluten on accident about five years after I was diagnosed with IBS and realized, boy, I feel a ton better. So that affected my gluten, my celiac, I should say, test results. And this is why asking questions matters. IBS doesn't rule out celiac, gluten sensitivity, or other triggers, but sometimes it delays those conversations in figuring out what's actually going on. So besides celiac, there are some other things that can hide under IBS. That can include food sensitivities. For example, I have a couple other food sensitivities that cause me an eye an irritable bowel. It is soy and tomatoes. FODMAP intolerance can also cause IBS symptoms. So you may be sensitive to the foods that are in the FODMAP and the avoid diet on the FODMAP diet. Lectins or nightshades can also irritate our systems. And general inflammation can cause us issues as well as some other immune patterns that could they can all work together. And that's what makes these things really hard to diagnose. So being diagnosed with IBS can potentially increase anxiety because your symptoms feel real, but your explanations as to why is very vague. People feel often dismissed or uncertain, and food becomes stressful without clear guidance because you don't know what's actually bothering you. And when you don't know what's causing your symptoms, food starts to feel unpredictable, and that creates anxiety most many times. So if you're listening to this episode and you've gotten an IBS diagnosis, but not a clear other food type of diagnosis that could be causing it, look at it as a starting point, not an end point. And you're allowed to keep asking questions. I wish I had kept asking questions, but I was a busy mom with two little toddl at the time. And follow-up matters. We want to make sure that we are looking into our system persistence and use that to create curiosity and help your doctors understand what you're going through so they can help you figure out what's going on. And having an IBS diagnosis doesn't mean there's no cause. It means the cause hasn't been identified yet. And that's an important distinction that a lot of people don't realize. It just simply means they don't know what's going on with your body. And if you've ever felt stuck with beg answers and lingering symptoms, we share practical guidance and real life support in our newsletter. You can join me at theglutenfreeengineer.com. Just click on the newsletter link and you can get encouragement and clarity in your email. And then I want to talk about the most important shift for me was that realizing I wasn't difficult or dramatic for wanting answers, I was curious. And curiosity is often the first step towards healing. This episode isn't about rejecting doctors' diagnosis. It's about remembering that your symptoms matter, your experience matters, and you're allowed to keep asking questions why until things make sense. Thank you for listening to this episode of the Gluten Free Engineer. If you found value in this story, please share it with someone who might need encouragement on their own gluten-free journey. For more tips, recipes, resources, and even links to my YouTube channel, head on over to theglutenfreengineer.com. It's your one-stop hub to make gluten-free living simple, fun, and full of flavor. And don't forget to subscribe so you never miss out on an episode. And we will see you next week. The Gluten Free Engineer Podcast is for informational and entertainment purposes only. I share my personal experiences and stories about living with celiac disease and navigating a gluten free lifestyle. This podcast does not provide medical advice. Always consult with a qualified healthcare professional for medical questions, concerns, or advice specific to your health.