Why Your Gluten Symptoms Are Real (Even if Doctors Dismiss Them)

Have you ever been told your gluten symptoms are all in your head? Maybe a doctor brushed them off, or friends and family made you feel dramatic for needing to eat gluten-free. 

I want you to know this: you’re not crazy, and your symptoms are real. 

In today’s episode, I’ll share why gluten can cause so many different symptoms, why doctors sometimes dismiss them, and how to trust your body even when others don’t. Stick with me until the end, because I’ll share a simple way to advocate for yourself at the doctor’s office without feeling like you’re being difficult.

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Chapters

• 0:00 Introduction: Your Symptoms Are Real
• 1:40 Why Gluten Reactions Are Legitimate
• 3:07 Why Doctors Often Dismiss Symptoms
• 5:50 Validating Your Experience Without Diagnosis
• 7:44 Self-Advocacy Strategies That Work
• 11:17 Episode Closing and Resources

Transcript

Carrie: 0:26

Quick reminder before we get started on this episode. This podcast is based on my personal experiences and isn't medical advice. Have you ever been told your gluten symptoms are all in your head? Maybe a doctor brushed them off or friends and family have made you feel dramatic for needing to eat gluten-free. I want you to know this. You're not crazy and your symptoms are real. In today's episode, I'll share why gluten causes so many different symptoms, why doctors sometimes dismiss them, and how to trust your body even when others don't. Stick with me to the end because I'll share a simple way to advocate for yourself without feeling like you're being difficult. Welcome to the Gluten Free Engineer Podcast. I'm your host, Carrie 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 why your gluten symptoms are real, even if doctors dismiss them. And so let's start off with just that fact. Why are they real? So gluten triggers immune responses in people with celiac and gluten intolerance. It's a legit reaction. It is causing your immune system to go haywire. It doesn't just cause stomach issues, it can affect the brain, it can affect your nerves, it can affect your skin, your joints, your mood. It can affect your whole system. It's really wild how much it can really affect everything. And so science supports these symptoms, even if they look unrelated. There is so much scientific evidence now about how gluten affects us when we're celiac or gluten intolerant, as well as how much it affects us when we're neither of those and we are being gluten-free because it makes our bodies feel better. It's just a scientific fact when you get down to it, and you can look up lectins and things like that if you really want to dig into it a little further. But there are lots of lectins in gluten. There are also certain proteins in gluten that our bodies have just not had time to adjust to because gluten and wheat is newer, relatively speaking, to all the other foods that we eat in our lives right now. And we eat a lot more of it than our ancestors did. So then why do doctors sometimes dismiss it then? There's a few different reasons why. Medical training often focuses on classic celiac symptoms. So diarrhea, weight loss, malnutrition type of issues. But there's non-classic symptoms as well: fatigue, migraines, depression, infertility. And they don't always fit into that box. They can cause so many issues with our female organs and how they work from a you know fertility standpoint. And I'm not sure too many people realize that. And so sometimes doctors aren't trained to put these puzzle pieces together. I feel like they're getting much better now than like, say, when I tried to get diagnosed over 10 years ago, which was even better than the 10 years prior to that. But it's something that a lot of doctors aren't trained on as well, especially if they're been in practice for a while. And also, IBS is often used as a catch-all diagnosis when answers are unclear. And really think about it. This is something that drives me a little bit crazy. I don't know if you've noticed this on the show, but IBS is a catch-all term, like I just said, right? But what drives me crazy about it is that simply that is his catch-all term. There is something, there's some reason that your bowels are being irritable. Like, so I feel like irritable bowel syndrome is just a way to get out of keeping digging into what the true problem is. I was diagnosed with IBS. Let's see, I think it was about 10 years before I got diagnosed with celiac disease. It was a it was quite a while before, at least five to seven years. I'm trying to have a hard time remembering exactly. And I was so frustrated. A gastroenterologist even tested me or diagnosed me as that and just gave me some medicine. Didn't test me for celiac disease. I didn't know what celiac disease was back then, but I could have been diagnosed sooner. I could have been feeling better sooner. I could have probably had a better third pregnancy because I wasn't um, you know, I would have known not to eat gluten and I wasn't being malnourished from one having celiac and two being pregnant. Uh so it was, it's just such a frustrating situation to me. Um, and IBS can be other things. It doesn't have to be celiac disease or gluten intolerance. It could be Crohn's, it could be so many other things, but I feel like doctors sometimes don't really become that detective for you and the advocate. So sometimes we have to advocate for ourselves. This is the short version of this, and figure out and help the doctors figure out what is going on because you know your body best. They're there to collect the information you give them. So the more details of the information you give them, the better off they're going to be in figuring out what's going on. And then here's something I struggled with validating the experience. At first, I wasn't actually officially diagnosed as celiac, and I didn't have a doctor's validation for what is going on with my body then. And I felt a little crazy, honestly, but I knew that every time I ate gluten, I felt awful, like I felt really terrible. So you sometimes don't need a test result or a doctor's validation to know your body and to know that something affects it and something makes you feel bad. You know, I had to also figure out there's other foods that make me feel feel bad. Some of these tests are really hard to be accurate, and it's not necessarily the doctor's fault. Like food intolerances can be hard to be accurate. Also, um, even food allergies can be hard to be accurate. I've been told by my own allergists that those tests are not always the accurate for some people. And so we want to use our symptoms as signals. It's your body asking for help. So pay attention to the signals that your body is giving you. That's those symptoms. For me, it was a lot of um migraines, it was a lot of mood swings that I was trying to, you know, I was actually trying to keep under control for the most part. Um, my digestive swings back and forth. There were so many things that was going on in my body, and my body was screaming for help after, you know, 30 some years of being undiagnosed. And many people find relief in healing once they trust their instincts and remove gluten, once they really listen to their body, like I felt so much better. And it helped me lead towards finding out that my kids had it too. Because I found out that I was so sensitive and I started doing research. What is this? And found that it's celiac disease. And that is, you know, then I realized that family members can have it too. So that's how we started testing the kids. So, how do we advocate for ourselves? Let's say that we feel like, you know, we have something going on, it's not being fully diagnosed, something going on with our stomach, or we suspect it might be gluten. I want you to write down symptoms and patterns. We want to write down foods and the reactions to them. Keep in mind, though, that everybody is different, and that's everybody and everybody is different. Um, the reaction to foods can last any, can start anywhere from like an hour or two to two days. So even if you don't get a reaction immediately, that doesn't mean there isn't something wrong. It really just depends upon our bodies how fast and the other things we're eating, how fast we're going to react to certain foods. So keeping a long-term journal of what we're eating and how we're reacting can really help. Bring research or family history to appointments when necessary that can really help you out. You can also ask for the full celiac panel. We have an episode about what those types of tests are, and there's different ones of them. So just not just a single test, as I talk about in that episode, that can be pretty inaccurate for some people, depending upon how your body is. So ask for the full celiac panel. And it's okay to get a second opinion or a third. It took me, I'm trying to think, at least two to three doctors to get diagnosed with celiac disease. Yes, I would say, yes, three doctors at minimum for me to get diagnosed with celiac disease. So it's okay to get a second opinion. You know, just recently my friend was having issues, and I encouraged her because of my situation. She wouldn't necessarily have gluten issues, but she was having some health issues, and she was getting dismissed by doctors. And I told her, you know, you need to get another opinion, and she did, and she's starting to get on the right track there. So give yourself permission to get that second opinion or third opinion when you need to. And then here's the strategy that helped me when most when I felt I was being dismissed. I started keeping a food journal. I was literally only eating gluten once a week. It was a Friday afternoon lunch. We would, I would splurge, and that was my one go-to cheat meal when I was working on eating primally, because with the primal blueprint book, I've got an episode on that too. That's how I discovered that was the beginning stages of me discovering I had celiac. I was, he has an 80-20 rule. 80% of the time you eat um really healthy and follow the primal way, and then you know, you can have 20% of your week is you can have like a little cheat. So my 20% was my lunch on Friday. That was a simple thing to do. Our office would go and get wonderful deli sandwiches. I so miss them. I need to recreate those myself. I just haven't had a chance to. And I was finding I was feeling terrible within a couple hours after eating that, and then all weekend. And then boom, on Monday, I would I would feel pretty good again because I'd been eating clean for like a bite, two and a half days by then. So I was able to see that pattern because I was only giving myself gluten once a week. So the fact that I was only eating gluten once a week really helped nail it down to being gluten that was causing my issues. I was way over it was way too masked whenever I was eating it consistently. So when I could point to those consistent patterns, it started shifting the conversation. It's a simple but powerful way to advocate for yourself and prove that what you're experiencing is very real. 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.