Think Gluten Only Affects Your Stomach? Think Again.

When most people think about celiac disease, they picture digestive problems like stomach aches, diarrhea, and bloating. While those are common symptoms, they are far from the whole story. 

Many people with celiac disease have few—or even no—digestive symptoms at all. Instead, they may struggle with brain fog, anxiety, migraines, joint pain, infertility, chronic fatigue, skin rashes, or depression, never realizing gluten could be the underlying cause. 

In this episode, we're exploring these surprising symptoms of celiac disease and gluten intolerance, why they happen, and why they so often lead to years of missed or delayed diagnoses. Understanding that celiac disease can affect far more than just the digestive system is an important step toward recognizing the condition and getting the right diagnosis and treatment. 

Save money, and no more guessing for dinner!  Use code GFE to get 20% off annual membership at thedinnerdaily.com. Plan meals for less than $4/month and save money at the grocery store!

Transcript

Disclaimer And Big Surprise

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 about celiac disease or gluten intolerance, they think about stomach issues, diarrhea, bloating, digestive problems. But what if I told you some people with celiac disease and gluten intolerance have almost no digestive symptoms at all? Instead, they struggle with things like brain fog, anxiety, migraines, joint pain, infertility, chronic fatigue, skin rashes, or even depression. And they never suspect gluten could be connected. Today we're talking about the surprising symptoms of celiac disease and gluten intolerance that have absolutely nothing to do with your stomach, because understanding these symptoms can help explain why so many people go years without a diagnosis. Let's dive in.

Meet The Host And The Show

Carrie Saunders 0:50

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 those other nasty symptoms that are non-stomic or digestive symptoms. And I do want to caveat today that I'm primarily talking about celiac disease only because that's where the research is the strongest. But many people with non-celiac gluten sensitivity report experiencing similar symptoms to those with celiac. So whether you've been diagnosed with celiac disease, gluten intolerance, or you're still searching for answers, I'm hoping this episode helps you better understand how gluten can affect your body. So let's dive in.

Celiac As Whole-Body Autoimmune

Carrie Saunders 2:03

Celiac isn't simply a digestive disease, and neither is gluten intolerance. But celiac specifically is an autoimmune disease, which means the immune system can affect the entire body. Your small intestine may be where the damage starts and where gluten starts invading our body and wreaking havoc on it. But it doesn't mean that's the only place you feel it. This is something I've experienced and all of my children have experienced, as well as many of my friends and family whom I know that have celiac as

Brain Fog And Focus Problems

Carrie Saunders 2:37

well. So let's talk first about how it affects our brain. For a lot of people, whether you're celiac or gluten intolerant, I have done research and talked to people about this, and a lot of them have brain fog and trouble concentrating. It's a very common thread. And whenever they've removed gluten, they feel so much better. The head is so much clearer. This is something that I was actually experiencing before we figured out I had celiac too. And memory issues can be in there too, and just feeling mentally off. For me, I not only had that brain fog, but I also had thoughts and things going on in my head that weren't just me, that they were just slowly becoming not me. And whenever I went off of gluten, it was like the world went in high definition. That's how I explained it to my friends and family. They're like, what's it like to be off of gluten? I'm like, it's like I put on high definition glasses or looking at a high definition television versus, you know, one from like the 80s. Um it just the world was so much clearer. I could visually process things clearer, I can mentally process things. It was just so much easier on my brain, and my brain wasn't struggling to operate and to do its normal day-to-day things.

Anxiety Depression And Irritability

Carrie Saunders 3:56

And then along with brain symptoms, there's also mood and mental health symptoms, which can be linked. It's also linked to the nervous system. It can cause anxiety, it can cause depression, it can cause irritability and mood swings. Not everybody experiences these, but I have seen this in myself. I've also seen this in about one or two of my children. It can just really turn your internals upside down, your internal chemistry upside down. If you're not digesting your food correctly, if you're getting something that inflames your whole system, it can really affect this part of your body. For me, I was starting to have some major internal anger issues. And I was having a hard time keeping those inside because I was not by nature an angry person, but I was finding over time that I was becoming more and more impatient, more and more easy to anger. And when I went off gluten, all that disappeared. I was really shocked. I wasn't sure what was wrong with me until I went off gluten. And I'm like, all these thoughts in my head are now gone. All these, you know, irritable thoughts. You know, a kid or a dog does something, you know, that kind of irritates you. It's not, it's unavoidable when you're a parent to have something irritate. You're always trying to take care of things. So you want things to go the way that helps things be easy. So little irritable things were making me really angry inside, which was not my normal. And it just felt wrong. So when I went off gluten, I felt so much better and I didn't have these symptoms. One of our children also had some major anger issues. He even would reference when he got older and say, Oh, yeah, I used to be really angry and really irritable before I went off gluten. He even recognized it as, you know, like a 10-year-old, how he felt and what he was like just a few years prior. He was very self-aware of that. So again, not everybody experiences these, but for many people, they do. And it's something people don't talk about. And that's why I want to talk about on this podcast episode, so that we can realize that yes, this can be a normal thing, and yes, this can get better when we have removed gluten from our diet.

Chronic Fatigue And Food Crashes

Carrie Saunders 6:11

Another section of our body it can really affect is fatigue. And this is something that's a bit more common than people think. And the problem with it is, is when as you're becoming more intolerant or as your body's breaking down because you've had undiagnosed celiac disease for a long time and things are getting really damaged, this can creep up on you slowly, just kind of like the mental mood swings we just talked about does. But so fatigue can really creep up on you slowly over the years. You might start getting more and more tired, you might attribute it to being just getting older or having a bunch of kids or work is stressful. But it actually might be the food that you're eating. If you're having constant exhaustion, waking up tired, afternoon tired crashes, you know, you get really tired in the afternoon after eating food, that can be signs of malabsorption, anemia, inflammation, an immune activation. You've activated your immune system. I've had people ask me, Carrie, why don't you get tired after lunch or why why don't you have that afternoon slump? And I really attribute it to not eating to eating foods that support my body, not eating foods that don't support my body, like gluten and other my other foods that I found that are I'm gluten intolerant or that I'm intolerant to, like soy and tomatoes. So I feel like it's because I try to support my body with my lunch, with my breakfast, and I'm not damaging my body, and I'm not giving it stuff that doesn't support my body. So whenever you've removed gluten, you are likely going to see that your fatigue is getting better and you're not going to be so constantly exhausted. So this is something it can really affect in ourselves and it can creep up slowly.

Joint Pain And Bone Health

Carrie Saunders 7:59

So another area that some people don't think about is joint, muscle, and bone systems. So celiac disease and gluten intolerance can affect these other symptoms as well. You might have joint pain, you might have muscle aches, you might have osteoporosis or osteopenia, you may have bone loss, you might have vitamin D calcium deficiencies. Very, very, very common. You may have inflammation. So some examples that we've run into that I've run into in my experience is one of our children's uh friends in high school was in so much pain. He was a tuba player, he carried a SUSA phone and marching band, and his mom found out that he was in so much pain. He was diagnosed with juvenile arthritis, I believe it was technically. But that was actually being caused by an undiagnosed celiac disease. So he didn't have that I'm aware of the traditional symptoms because there were already gluten issues in the family. It was a hereditary thing. So he didn't have the traditional digestive symptoms. He started out with this severe arthritis pain. So gluten can cause severe arthritis pain. Some people, that's the only symptom they have is arthritis and just hurting and muscle aches, and maybe it's fatigue as well. When we have celiac disease and we're undiagnosed and aren't treating or just aren't treating it, we can have major vitamin D lowness and we can have calcium. Before we figured out I had celiac, they had found that I was so low in vitamin D that they put me on 60,000 units. That is not a misspeak either. 60,000 units per day to try to get my vitamin D levels up. And they did that for several weeks, retested me, and my vitamin D barely moved. They couldn't figure out what was wrong. It's because I'm dumping all my vitamins out of my body. I'm not absorbing anything. None of those pills were doing anything. It was just going right through me. So it was, I would have been better off being out in the sun and getting vitamin D naturally than eating a vitamin D supplement. It was doing absolutely nothing because my body was so damaged and just flushing it all. So vitamin D is a very common low vitamin when you have celiac disease. Also, iron, it can cause such anemia. One of my children's friends in high school, uh, ex-girlfriend technically, had an anemia problem, a really bad anemia problem. And my child was like, you know, seeing her symptoms, she would faint. Uh, she was so tired all the time. He was like, you know, maybe you have celiac disease. Well, she got tested and she had celiac disease. So anemia, um, low vitamin D, calcium, um, B vitamins, those are all hidden symptoms of celiac disease, and you may not know it. So pay attention to these vitamins. Now, if you do have celiac or gluten intolerance, this is something you do want to test regularly. Talk to your doctor how often you should. But it's a good idea to check these vitamin levels to make sure you're digesting things properly again. Make sure you're absorbing those vitamins because long-term low vitamins can cause long-term issues. So if you're not having enough vitamin D, calcium, and the bone supporting nutrients, for example, being absorbed, you're going to end up with osteoporosis. It's just going to make it a lot more likely that you're going to start taking all that from your bones and your teeth, and you're going to have low bone density like I do. I was actually diagnosed at 37 with osteopenia. So my bone density was absolutely not what it should have been for a 37-year-old. So it's something we keep an eye on. We check my bone density every two years. So talk to your doctor if you're concerned about these things so they can check the appropriate testing for you.

Fertility And Hormone Disruptions

Carrie Saunders 11:59

And then something other people don't really realize either is that celiac and gluten intolerance can affect reproductive and hormonal issues, especially in females. It can cause infertility, it can cause miscarriage, it can cause delayed puberty, it can cause menstrual irregularities. For me, I really would love to know what I would have been like if I knew I had celiac disease in my teenage years. And I'm not afraid to talk about it, but when I was a teenager, my menstruation cycles were debilitating. I had to either eat constantly. I'm talking every one to two hours all day, the first day or two, or I had to sleep all day the first day or two. I would have a period for seven days, three weeks off, and again, seven days again. I was like clockwork. It was heavy and it was terrible. I was I had a hard time functioning. And I wonder if it's because I had undiagnosed celiac disease and it was just wreaking havoc on my body and being more um more intense than it would have been if I had been absorbing vitamins correctly and had all the nutrients and digesting things correctly. I haven't run into any research about this, but it's something I wonder about. But there are studies that show that celiac disease undiagnosed can cause infertility, miscarriage, delayed puberty, and menstrual irregularities. So I feel like it's probably is linked for me. So it's something to talk to your doctor about if you're experiencing any of these things and you suspect you might have a celiac. It's I just want to make sure that people are aware of this because many people don't realize that it can cause problems in this area of our bodies when we're female.

Skin Rashes Mouth Ulcers Hair Loss

Carrie Saunders 13:46

Now, another system that is um one you might not expect is your skin. Your skin can be greatly affected by undiagnosed celiac and by gluten intolerance. One of the common things, and I might butcher how to pronounce this, is dermatitis herpetiformis, is a skin condition that many celiacs have that is basically a celiac rash, is like the general way to just kind of describe it. It's a really bad rash, it's not comfortable, it's not something you really want to have. Another thing that people don't realize is mouth ulcers. When I was a little kid, I would get mouth ulcers a lot. I attributed it to um high acidic foods like pineapple and other fruits that are high acidic, but it actually is a vitamin deficiency, too. So I was actually vitamin deficient, and then these fruits were causing it to be exasperated, and then for me to get these mouse, it can also cause dental enamel defects. Uh, it can cause hair loss. If you're not absorbing your vitamins right, it can cause hair loss. So, celiac can definitely cause some skin and hair issues that a lot of people aren't aware of. There's also the skin on the back of your arm. If it has these little tiny bumps, they're not really bad, they're just these little tiny bumps. Some people call them chicken arm. That's a sign of a vitamin A deficiency, and that's very much linked also to celiac disease. I've known so many people who didn't know they had celiac disease, had the chicken arm symptoms, which I had as well. And then whenever they found out they had celiac, went off gluten, their body started absorbing vitamins again, and that went away. So it's it's just a little subtle symptom that a lot of people don't realize.

Why Diagnosis Gets Missed

Carrie Saunders 15:34

So, why does celiac diagnosis and gluten intolerance get missed? Many doctors still think if there's no digestive symptoms, it's probably not celiac. But when in reality, many patients present differently, it really just depends upon your body and how you react to the gluten in your system. So I want you to come away with this episode to knowing that if you don't have any tummy troubles, you still potentially could have celiac or you could still potentially have gluten intolerance. It's something you need to work out with your doctor if you're still unsure and not sure where you've land on this. I do want to warn you and caution you that I don't want you to self-diagnose. The reason celiac and gluten intolerance is so hard sometimes to diagnose is because it crosses over many other problems, many other diseases, many other illness conditions. So these symptoms can have many causes, and that's why it's hard to diagnose and hard to figure out.

Testing Advice And Final Takeaways

Carrie Saunders 16:34

So if you suspect celiac, get tested before removing gluten if you're in that situation where you haven't removed gluten yet, because that's the most accurate way to get a good accurate result. If you have removed gluten, you're going to need to work with your doctor to try to help figure it out whether it is celiac gluten tolerance or something else. Again, all these symptoms overlap with so many other things. That's why it's so hard to diagnose celiac disease to begin with, and it could be something else or both. It could be celiac and something else too. You could be a combination of things that are bothering your system. So at the end of the day, celiac disease is so much more than a digestive condition, and so is gluten intolerance. It can affect nearly every system in your body. And while going gluten-free isn't a cure all for every symptom, understanding these connections can help you ask better questions, advocate for yourself, and appreciate just how much healing your body is capable of.

Share Subscribe And Resources

Carrie Saunders 17:30

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