No Tummy Troubles? You Might Still Have Celiac

When most people think of celiac disease, they picture stomach pain, bloating, or running to the bathroom. But what if I told you that you could have celiac — and serious intestinal damage — without any stomach symptoms at all? 

It’s called Silent Celiac, and it’s far more common than you might think. Today, I’ll walk you through what Silent Celiac is, how it shows up in the body, and why it’s so important not to overlook. 

And stick around to the end, because I’ll share the surprising way Silent Celiac showed up in my own journey.

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It’s a space where you can connect with others living gluten-free, ask questions, swap tips and recipes, and get support from people who truly get it. Whether you’re newly diagnosed or a seasoned gluten-free pro, you’ll feel right at home.

Chapters

• 0:00 Introduction to Silent Celiac
• 1:37 Symptoms Beyond Digestive Issues
• 2:51 Why Silent Celiac Is Dangerous
• 4:39 Why It Gets Missed
• 7:19 Personal Experience with Silent Celiac
• 10:05 Episode Closing and Disclaimer

Transcript

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. When most people think of celiac disease, they picture stomach pain, bloating or running to the bathroom. But what if I told you that you could have celiac and serious intestinal damage without any stomach symptoms at all? It's called silent celiac and it's far more common than you might think, and a lot of people have never heard of it before. Today, I'll walk you through what silent celiac is, how it shows up in the body and why it's so important not to overlook. And stick around to the end, because I'll share the surprising way silent celiac showed up in my own gluten-free journey. Welcome to the Gluten-Free Engineer podcast. I'm your host, Saunders.

Carrie Saunders: 0:45

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.

Carrie Saunders: 1:25

Today we're talking about silent celiac, what it is and how to look for it. So silent celiac is having intestinal damage but no obvious digestive symptoms. So it's basically what it sounds like you have celiac, but you don't know you have it. It's really hard to detect. Many people don't get diagnosed with this because they don't fit the general picture of what celiac symptoms usually are, which include digestive issues. So those people that have celiac and don't know it might fall into this category. It's pretty typical for them to fall in this category and we'll talk about why here in a moment. But first let's talk about what does silent celiac look like? This can look like symptoms such as fatigue, brain fog, anemia or osteoporosis or bone density issues, skin rashes such as dermatitis herpetiformis that's a really hard word to pronounce for me. It could be mood disorders like anxiety, depression, anger issues just really kind of not feeling like yourself inside Could also be fertility issues, miscarriages or other female-related issues down there. For kids, it can be delayed growth or delayed puberty. It also can be very underweight. For children, it can be constipation for children instead of diarrhea as a typical sign for celiac disease in kids. So why is silent celiac dangerous? I mean, you may have guessed it already, because it still causes damages to your small intestine and your villi and you don't even know that you're having it. You don't know that you have celiac because it's basically being silent and having the non-typical symptoms or the non-classic symptoms in it and this damage is going to cause poor nutrition absorption and long-term complications. It also can increase the risk of autoimmune diseases and certain cancers if untreated. So let's go back to some malnutrition issues that we're talking about here.

Carrie Saunders: 3:30

There is somebody that we knew in our family who was diagnosed with anemia and was so anemic that she would many times just faint and pass out from her anemia Over time. One of my children was seeing these clues as well as some other clues, and he told her he was like I think you might actually have a celiac and talked to her about it and talked about the silent type of celiac symptoms and what that means. And she actually went to her parents and then they decided to get her tested for celiac disease. Turned out she actually had celiac disease. So I want to encourage you that if you have some of these silent celiac symptoms, it may be worth just double checking, just in case. Of course it can be something else. That's the problem with celiac disease it's so easy to misdiagnosis something else because the symptoms from celiac cross over with many other ailments. But it's definitely worth a check and it's many times not the first thing that a doctor will think of checking, especially when you're not having digestive issues at the same time. And that leads us into why it gets missed.

Carrie Saunders: 4:43

Doctors typically look for classic stomach symptoms. They don't realize that these other symptoms could be a sign of celiac. They may not be checking your vitamin levels to see if you're deficient in it, which is also a great sign for celiac disease. And many patients will dismiss the fatigue or anemia as unrelated. This person, for example, that I gave my story just completely dismissed. It just thought that was just. Her body didn't process iron and it wasn't getting you know the iron nutrients it needed. It had no idea it was celiac that was causing the nutrition deficiencies that were causing the anemia. Also, you might get negative tests if gluten-free before you get the test for celiac.

Carrie Saunders: 5:29

So note that in episode 36, I talk even more about why you might get a negative test for celiac, but you might still have it. So make sure you listen to that episode if you haven't already. It talks about the different blood tests, what they mean and who they're most applicable for. Obviously, we want to be checking with our doctor with all of this. I cannot give medical advice. I can just give experiential knowledge to our listeners. So make sure you're talking to your doctor and making sure you've got the right blood test.

Carrie Saunders: 6:01

If you still suspect celiac disease but you've got a negative one, there's also biopsies. You can get confirmation most of the time via biopsy. And then if you have a family history, if you have a direct relative that has celiac, you're going to have a higher risk of actually having it yourself, because it is a genetic disorder. It is something passed down generation to generation. So it's a great idea to screen everyone that is directly related to somebody that has celiac, even without symptoms, because, as you can see by listening to this episode, you can have celiac without having that typical digestive issues with it. And then I want to encourage you if you found this episode helpful and eye-opening, you might want to subscribe to our newsletter. We send that out about every other week right now. I share gluten-free tips, safe product finds and personal stories to help you navigate your gluten-free life with more confidence. You can sign up for that at theglutenfreeengineercom, Find our recipes there as well as any of our other resources to make your life easier for gluten-free. And then I want to talk about my bonus tip before we completely wrap up.

Carrie Saunders: 7:14

Today, silent Celiac actually showed up also in my own history. I did not have at first very consistent digestive issues until I went off gluten and then it was very obvious every time I ate gluten that was causing digestive distress. And why I didn't is because I was continually eating it. I was eating it all the time. So you know, sometimes I would swing one way to the other as far as digestive issues, and it was never really correlated with a direct meal. It's kind of hard to correlate a direct meal with digestive issues unless you've completely eliminated that food and then add it back in like weeks later.

Carrie Saunders: 7:49

So some of the things I had is I had brain fog, I had fatigue, I had nutrition deficiencies nutrient deficiencies. I have low bone density. I got diagnosed at age 37 with osteopenia, so basically the disease is before osteoporosis. So now I have to really take care of my bone health, to make sure and to minimize my risk of fracture and getting osteoporosis. And it wasn't until I learned that these can be signs of celiac that I did. I put the pieces of the puzzle together.

Carrie Saunders: 8:22

So, even though I, you know, didn't always have major gut issues, I had no idea I had celiac, but these other signs and symptoms were there. I had major mood issues inside of me and I had to really control that and try not to let these anger issues come out of me, because that's not who I was, but it was who I was becoming internally after years and years and years of being undiagnosed with celiac. So sometimes these things are gradual. Sometimes they'll come upon you gradually. So don't feel like. Well, I didn't react strongly when I was a kid, so why am I reacting strongly now? Well, that's probably because your body's been damaged over a long period of time and now it's starting to wreak havoc on your body and your whole, all of your other systems. So just because your stomach isn't hurting, it doesn't mean that you don't have celiac or you could have a silent celiac. Obviously there are other things that could be going on too. So we always want to be checking with our doctor, but I like to let people know about silent celiac because a lot of people don't realize it, and my goal is to help people who do actually have celiac get diagnosed earlier, sooner, so that they can feel so much better and have a much more fulfilling life.

Carrie Saunders: 9:38

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 theglutenfreeengineercom. 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 a medical advice. Always consult with a qualified healthcare professional for medical questions, concerns or advice specific to your health.