Gluten Free Engineer - Making Gluten Free Easy

Do I have Celiac Disease or Gluten Intolerance: What You Might Be Overlooking

• Carrie Saunders • Episode 8

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When you think of celiac disease or gluten intolerance, what comes to mind? Stomach pain, bloating, and digestive issues, right? But what if I told you that gluten can affect your body in ways that have nothing to do with your stomach?

From brain fog and fatigue to skin rashes and joint pain, the symptoms of gluten intolerance and celiac disease can show up in unexpected places—making them harder to recognize.

In today’s episode, I’m breaking down some of the less obvious signs of gluten intolerance and celiac disease, so you can spot the red flags you might be overlooking. Whether you're curious about your own symptoms or want to help a loved one, this episode could be the key to uncovering answers!


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Carrie Saunders:

Quick reminder before we get started on this episode. This podcast is based on my personal experiences and isn't medical advice. When you think of celiac disease or gluten intolerance, what comes to mind? Stomach pain, bloating and digestive issues? Probably right, but what if I told you that gluten can affect your body in ways that have nothing to do with your stomach? What if I told you that gluten can affect your body in ways that have nothing to do with your stomach? From brain fog and fatigue to skin rashes and joint pain, the symptoms of gluten intolerance and celiac disease can show up in unexpected places, making them harder to recognize. In today's episode, I'm breaking down some of the less obvious signs of gluten intolerance and celiac disease so you can spot the red flags you might be overlooking. Whether you're curious about your own symptoms or want to help a loved one, this episode could be the key to uncovering the answers.

Carrie Saunders:

Welcome to the Gluten-Free Engineer Podcast. I'm your host, k 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.

Carrie Saunders:

Today we're talking about some of the less obvious signs of celiac disease and gluten intolerance. Many of these signs and symptoms people dismiss and think it's something else that's bothering them or some other ailment or some other problem with themselves. But celiac disease and gluten intolerance, it can affect your whole body. Celiac disease, as we know, is an autoimmune disorder, meaning it can affect your entire body, not just your digestive system. In gluten intolerance, while not an immune reaction, it can still cause widespread inflammation that impacts various systems in your body. Because these reactions affect different parts of the body, symptoms can appear in unexpected ways, often leading people to dismiss them or misdiagnose them as other issues in their life or other ailments. So one of the first uncommon symptoms of celiac disease and gluten tolerance is brain fog and difficulty concentrating. So if you feel like your brain or your mind is in a fog, if you have trouble focusing, trouble remembering things. It could be due to gluten. Gluten can cause inflammation in the brain, leading to cognitive issues, often misdiagnosis, adhd, anxiety or just simply being tired.

Carrie Saunders:

I know for me, over the many years of me, you know, trying to figure out that I had celiac disease, I felt like over time it was something that grew upon me. This brain fog was something that grew upon me. I didn't even know it was there until I'd been off gluten for about two to three weeks and then it felt like the whole world was in high definition again. Two to three weeks and then it felt like the whole world was in high definition again and it felt like I had slowly started developing looking through the little tiny old tube TVs of like the 70s and 80s. And then, once I finally got off gluten and knew that that was my problem, oh my goodness, the whole world changed in front of me. I could see and process so many more things in my environment around me.

Carrie Saunders:

So if you feel like you're not quite yourself or not quite what you used to be, it's possible. It may not be age or some other ailment. It could be simply the food that you're feeding your body and it could be brain fog from something like gluten or some other food intolerance you might have from something like gluten or some other food intolerance you might have. Also, if you are fatigued or have low energy levels, this is another uncommon sign of celiac disease or gluten intolerance.

Carrie Saunders:

Chronic fatigue, even after a full night's sleep, can be a sign of malabsorption of your nutrients. So when your body isn't absorbing nutrients due to damage in the small intestine, it can greatly affect you in a tiredness manner. Many people with celiac disease are low in iron, vitamin B and also magnesium, which contributes to exhaustion. So if you're much more tired than you used to be, especially if you consider like maybe what you used to be as a teenager or in your 20s or your 30s you know, obviously depends on how old you are now but if you feel a lot more tired than you used to be, it could be something wrong with your system. A malabsorption or a vitamin issue which could be related to C-like disease could be related to something else, but it's worth getting checked out. Don't just accept that oh well, I'm getting older, so now I'm more tired. Don't accept that that could be actually something else you can actually do something about and fix. So pay attention to your energy levels and for your fatigue, something that really got me too. That was an early, early sign that we had no idea.

Carrie Saunders:

When I was a little girl, I was always diagnosed with eczema and skin issues. I had such sensitive skin. So if you have skin rashes, itchy skin, that could be a sign of gluten intolerance or celiac disease. There's a specific skin issue called dermatitis herpetiformis. Of whom saying that? Right, this is a pretty big word. It is caused by celiac disease. It is characterized by itchy, blistering rashes that often appear on the elbows, knees or scalp.

Carrie Saunders:

I personally had this on my face. I had it on my nose. I did have it on my elbows and my knees as well, but I had it on my nose and actually on my cheeks. I was diagnosed misdiagnosed with rosacea. I didn't have rosacea, I had celiac disease. We found out later. I remember my little kids saying mom, why is your face getting so red? What are those blisters on your nose? I had no idea at the time that I had celiac and that was what was causing it.

Carrie Saunders:

As soon as we realized I had celiac and I went off gluten, all those things started slowly disappearing and I stopped having these skin issues I had, and even without this condition, gluten intolerance can cause red, dry or itchy patches that are often mimic eczema. So your eczema potentially could not be eczema and it could be a food intolerance, like gluten food intolerance. Or if you're celiac, like me and you have these blistering things on your skin that sounds really gross on your elbows and your knees and stuff it could be a sign of celiac disease. There's also another one that people don't realize as well. It's called chicken arm. So if the backs of your upper arms kind of feel and look like the skin of a chicken, that's likely due to a vitamin A deficiency. That's what happens when you have a vitamin A deficiency and that's another vitamin you could be low on if you have a celiac disease. So pay attention to that.

Carrie Saunders:

Whenever I know somebody who doesn't know they have celiac because maybe they don't but maybe they do and I notice the rash like that then I let them know just in case. So they can check out and, you know, go to their healthcare provider and see for themselves whether they actually have celiac. Because it's such an easy disease, relatively speaking, to fix. We fix our diet. It's not some crazy thing we have to take all these kinds of medicines or do all these crazy things. We just simply fix our diet. So if I can help one other person, I will mention it so they can talk to their doctor about it.

Carrie Saunders:

Another common thing that is not common but people don't realize that it actually happens is joint pain and muscle aches. Inflammation triggered by gluten can cause joint and muscle pain and it often resembles arthritis. So if you have stiffness or swelling without a clear injury, gluten could be a factor. I know one of my kids' friends from high school. He actually had C-TAC and didn't know it and it presented as extreme youth arthritis. His family had no idea how much pain he was in until he finally started telling them and they started doing some digging. And his dad actually has gluten issues as well and it was actually celiac disease that was causing this extreme youth arthritis in him. So as soon as he went off gluten the world changed for him. He felt so much better. So if you have arthritis, it's possible it's related to gluten. It obviously can be other things too, but it's worth checking out. You might as well. It's an easy test to check it out and see.

Carrie Saunders:

Here's something that also affected me quite a bit and I didn't realize it because it crept on me over the years slowly Mood swings, anxiety and depression. Over the years, slowly, mood swings, anxiety and depression. Gluten can affect the neurotransmitters like serotonin and it can contribute to anxiety, depression and mood swings. Studies show a higher prevalence of mental health issues in people with undiagnosed celiac disease.

Carrie Saunders:

For me, I was becoming more and more and more angry and I suppressed it because I am in general not an angry person and I wasn't sure what was wrong with me. I wasn't sure why I was having these angry thoughts inside. I wasn't sure why I was having these angry feelings. I wasn't so sure why I was so short to temper when I didn't used to be so short to temper. If you actually know me in person, you know I'm a pretty generally easygoing person and I really don't get mad. It takes a lot for me to get mad. Now, when I do get mad, my family, including my kids, will say Mom's scary when she gets mad. But before I got diagnosed with celiac disease I had these feelings, these angry feelings inside me that I had no idea where they were coming from. After going off gluten they're all gone. Now I only get angry because I might actually have a really good reason, not because somebody did something silly that annoyed me and then I got angry because of something silly, you know, something that would not normally anger a person. So if you start having mood swings, anxiety and depression and you can't figure out why it's possible, it could be gluten that is bothering your system and causing some problems in your brain. So gluten issues can actually cause a hormonal imbalance as well.

Carrie Saunders:

Gluten issues can actually cause a hormonal imbalance as well, especially in women. It can really lead to problems like irregular periods, severe PMS, infertility or difficulty conceiving. For me personally, it created severe PMS and really severe first or second day of my period. I would have a period for seven days, no less seven days. The first two days were really heavy. That first day, if I didn't eat constantly all day or sleep, I couldn't function. I just couldn't function at all. I had the worst cramps in the world and I just felt awful unless I ate all day, and I think it's because I didn't have the nutrients my body should have had on a normal day. And then, on the first day of a heavy period, my body was really severely reacting to the lack of nutrients in my system and also in men, it can cause problems with testosterone levels and overall energy. So gluten can affect our hormones and we don't even realize it.

Carrie Saunders:

Another thing that gluten can affect is headaches and migraines. Frequent headaches and or migraines, especially those that seem to have no clear trigger, can sometimes be linked to gluten consumption, and removing gluten has helped many people reduce or eliminate their chronic headaches. For me, I started getting migraines in my teenage years. We attributed it to my hormones and we also attribute it to the weather, because it would many times be correlated with a shift in storm systems. Now, as I got older, you know, these were still going on. So it wasn't just my, you know, teenage hormones that was causing it. I was having migraines all the time and I would have them more often in the spring and summer, so they were still correlated with storm fronts moving through. However, when I went off gluten because I had celiac disease, the number of migraines I get is greatly reduced. I might have one or two a year where I was having sometimes one or two a week. So gluten for me was exasperating a condition I already had, which was a tendency to have migraines to begin with due to hormones and or due to storm systems, and removing gluten has so much changed my life and made it so much for the better as far as migraines and headaches go, because I will have some of those clusters in the spring and fall, still with these. You know storm systems that go in and out and the barometric pressure changing rapidly on me, but I don't get them like I did before. I have much less severe. I'm actually can function with my migraines now and I don't get them nearly as often. They are so so much less frequently. So if you know somebody or if you're one that has frequent migraines or headaches, it could be gluten related. Now I did find out later in my life, whenever we found out I actually also have a soy sensitivity, that soy is another one of my migraine triggers. So now that I don't eat soy or gluten, my migraines are even less than they used to be as well. Now, one that's really really not well known I feel like.

Carrie Saunders:

This other symptom is numbness and tingling in your fingers and your toes. Some people with celiac disease experience this numbness and tingling, or a pins and needles sensation in their hands and their feet. This is due to nerve damage caused by prolonged inflammation and nutrient deficiencies. I had this pretty extremely whenever I was pregnant with my third child. We did nerve testing. All my nerves were fine and acting normal and they didn't know what was wrong. They thought, oh, maybe the baby's laying on some of your nerves, right? Well, after I had my third child, I still had this numbness in my fingers and my toes, not related to anything that we can figure out at all. Now that's actually a vitamin deficiency. When you have the numbness and tingling in your fingers and toes in this situation, you can have other reasons for numbness and tingling in your hands and feet, but for me it was a vitamin deficiency.

Carrie Saunders:

Whenever I went off gluten from being you know diagnosis celiac. Over time I realized, hey, wait, I'm not having those episodes of my toes and my feet and my hands going numb anymore. And I did some research and yes, it is linked to a vitamin B deficiency and one of the vitamin Bs and celiac disease can exasperate this because we don't absorb our vitamins properly. So this is something that I find that a lot of people don't realize is it can cause that neuropathy in your body and that numbness in your hands and your feet. Obviously, like I said, there are other reasons, like diabetes and other things. That's very serious and severe as well, but it is an uncommon symptom of celiac disease as well, and we touched on this one a little bit. But iron deficiency and anemia is also a celiac symptom an undiagnosed celiac symptom. So if you're constantly tired, pale, short of breath, iron deficiency anemia could be to blame. In celiac disease, damaged intestines prevents the absorption of iron and other nutrients, leading to anemia. That doesn't improve with supplements.

Carrie Saunders:

For me, when I was a little girl, I remember my grandmother taking me to the doctor and telling the doctor she's always complaining of being tired. She's always tired all the time. You know I had all this energy but at the same time I was also exhausted all the time. Little did we know back then that I had celiac and we probably could have fixed this a long time ago. I had celiac and we probably could have fixed this a long time ago and one of my children's former girlfriends. She actually was anemic, anemic all the time. She was passing out all the time. My son was like have you been tested for celiac? Maybe you have celiac disease. Turns out she actually did. They tested her and she was positive for celiac. So listen to your body. That's going to be like. The theme of this whole podcast is listen to your body and make sure you dig for answers. And we were thankful she dug for answers. Now she can be choose to be a much healthier person now because she knows she has celiac too.

Carrie Saunders:

And another uncommon thing is dental problems. Now, this doesn't happen to everybody. This is why these are some of the uncommon symptoms of celiac and gluten intolerance, because they don't all affect everybody. For me, dental problems didn't affect me until my 30s or so. Once I'd really been malnourished for a very long time. And we rarely think of our teeth when it comes to considering gluten. But weak enamel, frequent cavities and mouth ulcers can all be signs of celiac disease. Now I had mouth ulcers all the time as a little girl. We always attributed it to two acidic foods like pineapple or strawberries or something like that, because it would get us aspirated whenever I was heavily eating those types of foods. But mouth ulcers are actually another sign of celiac disease. People don't realize. My oldest had cavities in his baby teeth and he was celiac and we figured that out when he was in, I believe, fifth grade. It was, and you know, once we got him off gluten His teeth. He hasn't had cavity issues since we took him off gluten Another amazing thing for him too and not only dental problems, but it also can affect your nails and your hair.

Carrie Saunders:

So for him, three months after going off gluten, after we found out he had celiac, he went to go to clip his nails. Granted, he's in fifth grade, he's what? 11 years old at this time. He had always been clipping his nails with those itty bitty, tiny baby nail clippers I'm talking the newborn nail clippers. He comes out of the bathroom he's like mom, I can't clip my nails. I'm like what do you mean, buddy? He showed me the nail clippers he was using and he couldn't clip them. He he showed me the nail clippers he was using and he couldn't clip them. He was finally getting enough nutrients after three months of going gluten-free that his nails had grown out and were stronger.

Carrie Saunders:

So weak teeth and weak nails are some undiagnosed symptoms of celiac disease as well. It was crazy that we had to actually get real fingernail clippers out for our child, that we've never had to get real fingernail clippers out. We always thought, oh, he's just got weak teeth, oh, he's just got weak nails. We just dismissed it, having no idea he had this underlying disease that we could easily fix with diet. So why are these symptoms often missed it? So why are these symptoms often missed? Many of these symptoms are common in other health conditions, which can lead doctors to overlooking gluten as a culprit. You know, many of these symptoms I just talked about can be related to other things, such as diabetes or other types of issues.

Carrie Saunders:

People often see multiple specialists neurologists, dermatologists, therapists without connecting the dots. I know for me personally. I saw a gastroenterologist. He diagnosed me with IBS without even testing me for celiac disease. This was before I had my third child, so this was probably eight years before I actually got diagnosed with C-ac disease. I knew something was wrong with my body, but he even didn't even test me. I'm still upset about that to this day, because he was actually the right doctor to actually test and confirm this right.

Carrie Saunders:

I saw my primary care doctor. I saw allergists. We couldn't figure out why I had all these allergies. Whenever they would do allergy testing, I was allergic to two types of mold, that's it. Nothing else Not grass, not tree, not pollen, anything. Yet I always had a stuffy nose. I always was so tired, I always had like asthma. I had all these allergy symptoms that went away when I went off gluten. So many times we have to see multiple specialists to get the right diagnosis and that's why I keep emphasizing listen to your body and press for answers. It took a long time for me to get my diagnosis. This can unfortunately delay diagnosis for years, just like it did for me diagnosis. This can unfortunately delay diagnosis for years, just like it did for me, leading to more severe complications over time.

Carrie Saunders:

I am the shortest person in my entire family. All of my first cousins and my mother and my father were normal to tall height. I'd barely make 5'3". I probably would have been taller if we'd known that I had celiac disease from an early age. It stunted my growth. Very likely. It's also, you know, long-term damaged me.

Carrie Saunders:

So if you suspect that gluten might be the cause of some of these symptoms, then in you or even in a loved one, don't ignore them. That's kind of the theme here. You need to get down to the root of the cause. Talk to your doctor about testing for celiac disease, but remember you need to be actively eating gluten for tests to be accurate and you many people say you need to be eating it for two to three months for it to be accurate. And if tests come back negative but you still feel better without eating gluten, you may have non-celiac gluten sensitivity, which is still just as real and worth addressing as well.

Carrie Saunders:

A lot of doctors I talk to now especially and I've been going to an allergist because I'm still having some allergy problems. Again they've come back again, but this time now I'm allergic to decimites and I'm also having some sensitivities to certain foods like eggs and tomatoes and bananas and peaches and plums and you know all these things you wouldn't think about and he's tested me for these, for allergies, and he's done several different types of tests prick tests as well as blood tests and they've come back negative. But he's a smart enough doctor that says well, if it's bothering you, then you shouldn't be eating it. You know he is also advocating for me to listen to my body, which I find very refreshing in a doctor that he's listening to me and listening to everything I have to say and saying, okay, we did these tests, we can't eliminate that, you're not allergic to it, these tests aren't perfect, so if it's bothering you, then you shouldn't be eating it. So again, we're going back to listening to our body. So gluten doesn't just affect your stomach. It can impact your brain, your skin, your hormones and even more so if you're struggling with symptoms that don't seem to have a clear cause, gluten could be the missing piece of the puzzle. So I encourage you to work with your doctors to help figure this out. Listen to your body, advocate for yourself and don't stop looking for answers until you feel your best. You deserve to live a life free from the symptoms that are holding you back, just like I deserved it, and I am so happy to have figured out so much of my problems from things I'm just simply eating.

Carrie Saunders:

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.

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