The Celiac Complications No One Warned Me About

Two summers, two very different pathogens, and one question I couldn’t shake: can celiac disease make some of us more vulnerable when foodborne illness hits? I’m sharing what happened after I ate lunch meat that was later linked to a recall and ended up with confirmed listeriosis, plus what it took to finally get back to normal. It wasn’t a typical “I got glutened” day, and that difference mattered. 

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Transcript

Medical Disclaimer And Big Question

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. Going gluten-free is the essential treatment for celiac disease, but it does not necessarily erase every consequence of this disease, especially when someone has experienced substantial or lasting intestinal damage. This episode uses my experiences with confirmed listeriosis and cyclospora to explore a bigger question. Can celiac disease leave some people more vulnerable when other illnesses come along? The answer is nuanced, and celiac disease does not mean that everyone has a weak immune system or will frequently contract foodborne illnesses, but intestinal damage, impaired nutrition absorption, certain associated immune deficiencies, and complications such as reduced spleen function may affect how some bodies defend themselves and recover. Let's dive in. Welcome

Why Celiac Affects More Than Digestion

Carrie Saunders 0:56

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 other complications celiac disease can have that no one has warned me about and that we've discovered over time via experience and with doctors over the many years of me knowing I had celiac disease. And just to recap, real quick, in case you're not familiar, celiac disease is a chronic digestive and immune disorder. So when someone with celiac consumes gluten, the immune system reacts and damages the lining of the small intestine, and that damage can interfere with the absorption of vitamins, minerals, and other nutrients. And in rare cases, a person may continue to have severe absorption problems despite following a strict gluten-free diet. The intestinal lining is not merely where food passes through, like a lot of people think. It's also an important barrier between the outside world and the rest of the body. So besides absorbing the nutrients we need from our food, it also helps protect our bodies from outside parasites and diseases. Research describes intestinal permeability as a central part of celiac disease. In simple terms, when that barrier is disrupted, the intestine may not perform all of its protective functions as effectively as it should. So, in short, the small intestine does not just absorb nutrients and vitamins and minerals and the foods that you eat. It's also a part of our body's defense system. It's part of our immune system.

Listeriosis After Recalled Lunch Meat

Carrie Saunders 3:03

So two summers ago, I became seriously ill after eating lunch meat that had been contaminated with listeria. You may recall the boar's head lunch meat recall of, let's see, that would have been 2024. It was around July of 2024. We don't generally eat lunch meat very often, but when we go on trips, it's a really easy, convenient lunch when we don't want to eat out all the time, and it's just easy to take with us. So we took our normal lunch meat to Myrtle Beach, having no idea that this was out there, because I don't think the world actually even knew this yet, because it was like another week or two before this recall came out. So we ate our lunch meat. I was feeling fine. We get home from vacation and I start not feeling really great, and neither does my husband either. And we didn't think too much about it. You know, it could have been post-going on vacation and trying to be super careful of not getting cross-contaminated or gluten or you know our other food intolerances like soy, but we weren't feeling great. Well, we got lunch meat again just because we had gotten it the couple weeks before. It was kind of nice for something different for lunch. Well, I started feeling so terrible. Turns out I had listeriosis from the Listeria bacteria that was in this recalled lunch meat. So I'd actually eaten two rounds of the lunch meat that ended up being recalled. The only way I knew it was because our local grocery store had a notice at the bottom of my receipt that I bought lunch meat that had been, you know, recalled. So I was very appreciative of Kroger having that recall on my receipt the next time so I could see that I had had the lunch meat that had been recalled. Now, this was a bit of a mystery to my primary care doctor. She didn't, she was like, You're healthy, Carrie. I don't understand why you got listeriosis. You know, we did all the testing, we ruled out everything else, and it was listeriosis. It took me two rounds of a Z Pac antibiotic to get rid of it because I was allergic to the main antibiotics that can fight off listeriosis. So she was kind of, you know, swinging blind here, hoping that a Z pac would help me because that's one of the antibiotics that I tolerate, and it's a bit of a broad spectrum one, but it wasn't really a targeted one for listeria. So she gave me two rounds of it. You know, I waited in between them and then realized it was coming back again. So then I took the second round and I was good.

Cyclospora And The Hypoglycemia Return

Carrie Saunders 5:34

But then this year I actually contracted Cyclospora, which is a microscopic parasite often associated with contaminated fresh produce. Both infections were confirmed by a doctor. This time it was an urgent care doctor because we were getting ready to leave for a second trip this summer, and I wanted to get checked out before we left because I didn't want to go to a strange, you know, urgent care. And I was feeling pretty awful. And honestly, it's been, I think, four weeks now, and I still don't feel great, but I'm having more of the other symptoms from it at the moment. But it's something that you need to be paying attention to your body for. When I went to the doctor, I told her, you know, all the things that were wrong, including hypoglycemia. This parasite has created hypoglycemia in me again. I used to have that a lot before I figured out I was celiac and going off, you know, gluten actually helped me absorb enough food and nutrients and help my body digest food properly so that my hypoglycemia was much better. And so I controlled my hypoglycemia in general via eating and via food, but I haven't been able to control it while I have this parasite in me. And I let her know that. And she confirmed that I have this parasite. Now, what she raised though, and I explained to her, you know, I said a couple years ago I got listeria, and my doctor was a bit surprised that I got listeriosis because of being healthy in general. And she mentioned, you know, hey, with celiac disease, she actually seemed to be pretty knowledgeable in celiac disease. She's like, with celiac disease, your immune system is a bit more compromised. Your small intestine may not protect you from these parasites and bacteria that most healthy people would, you know, their immune system would take care of it. They might feel a little bit off, but they may not even notice that. So I just want people to be aware that if you have celiac disease, you may be more apt to contract odd bacteria like this that a healthy person shouldn't otherwise, or parasites.

When To Call The Doctor

Carrie Saunders 7:49

And this is not an episode meant to scare you, it's really more meant to inform you because I don't think this is talked about enough. I know, for example, if I get really sick with the flu or a stomach bug, the combination of my celiac disease and hypoglycemia makes it so much harder and longer for me to recover because I have to really be tender to my digestive system and tender to my system in general to get well again. And so I just want us to be aware of the fact that if you are one of those that are listeners that have celiac versus the gluten intolerance and you're having this intestinal damage or you've had the intestinal damage, I want you to be aware that these things are possible. You're not crazy. If you don't feel good, if your digestive system, sure, when we have celiac, we might accidentally get gluten and have a bad bathroom day, for example. But if it's different than your bad bathroom days from accidentally getting gluten, go to your doctor. That's what made me go to the urgent care this summer. And what made me go to my doctor when I had listeriosis that was different. Pay attention. You know your bathroom habits. If you have bathroom-related symptoms to your celiac disease, which most people who have celiac do, some don't, though. There is something called silent celiac, and you don't have the traditional symptoms. But if you do and you know it's different than your normal I accidentally got gluten, go to the doctor. You know, especially if it lingers for a longer than it should, you know, maybe a day or two. Go ahead to the doctor. You, your body might need some help fighting off some sort of foreign bacteria or parasite. Obviously, this is not hopefully something very common out there, but this is something that has happened to me twice in the past two years. You know, there were two different situations, two different types of things that got in my body. You know, one was bacteria, one was a parasite. But I just want to make sure we're aware that our immune system may be a bit weaker. You may have some malnutrition or nutrition deficiencies. If we're not getting the right vitamins and minerals, our bodies have a harder time fighting off diseases and fighting off foreign things.

Gut Healing And Nutrient Support

Carrie Saunders 10:12

We want to make sure that we have healed our gut and done all the things to, and all the things our doctors have recommended to heal our gut. I know some things that mine have recommended is bone broth is great at healing your gut. It's something I try I do occasionally, not all the time. I'm just I'm not a huge fan of it, I'll be honest with you. I would rather put it in like a soup and get it that way rather than straight. But there are different ways you can heal your gut. I highly recommend talking to your doctor or your practitioner. See what they recommend, especially if you find yourself like me getting these odd illnesses that you should be okay with. I know one of my gluten-free friends has she's a person who cleans dormitories here at our university. And she's gotten super duper sick cleaning the dormitories because she's accidentally gotten some sort of digestive thing from there, and she's got celiac, so it's it's easier to get in her body. So I just want to encourage us to really take care of ourselves, really listen to our bodies and go to the doctor when you know something's off. So hopefully this helps you understand the other problems that you might get with celiac disease that damage isn't not just nutrition-wise, it also could be an immune system barrier issue that you can use to discuss with your doctor. Thank

Share Resources Subscribe And Closing

Carrie Saunders 11:35

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.