A Boomer and GenXer Walk into a Bar
Wit and wisdom, some smart assery, and a Mother and Daughter questioning “Are we even related?”
A Boomer and GenXer Walk into a Bar
When Your Body Betrays You: Understanding the Silent Symptoms of Celiac Disease S:1 E:27
Note: Turn it up! Our guest is very soft spoken; unlike your hosts!
What if that chronic stomach pain, fatigue, or brain fog isn't just "part of getting older" but a serious autoimmune condition affecting millions? Join mother-grandson duo Jane and Dustyn as they share their personal journeys with celiac disease, an often misunderstood condition that went undiagnosed for decades in Jane's case.
You'll discover why the distinction between "gluten-free" and "celiac-safe" could be life-changing for those with this condition. When even 1/350th of a slice of bread can trigger an immune response lasting weeks or months, cross-contamination isn't just an inconvenience—it's a serious health risk. The hosts also explain the connection between untreated celiac and increased cancer risks, and why you should never eliminate gluten before getting tested.
Whether you suspect you might have celiac disease or simply want to understand what your gluten-sensitive friends experience, this episode offers insights that could transform how you think about food, chronic illness, and the importance of proper diagnosis. This isn't about following trends—it's about recognizing a legitimate medical condition that affects approximately 1% of Americans, with potentially twice that number undiagnosed.
Subscribe, share with friends, and join the conversation by emailing your questions to boomerandjenexer@gmail.com.
email: boomerandgenxer@gmail.com
hey, hey, hey. Good day everyone, and welcome to a boomer and gen x are walking to a bar where you, as our listener, will hear some wit and wisdom, some smart assery and a mother and daughter questioning. Are we even related? And so we welcome you. Today we have bobby is my co-host and bobby we have a guest in the studio today, don't we?
Speaker 2:we do and we are actually in the studio.
Speaker 1:I can't believe it, we are back to the rabbit hole studio and we are so happy to be face to face. I'm not sure if that's a good thing or a bad thing uh, because we seem to get into more trouble when we are at the rabbit hole, but nevertheless, we do have a guest in the studio.
Speaker 2:That's right. See, you went off the script and now here we are.
Speaker 1:There we are, and so who is our guest in the studio today? Do I recognize him? Yes, I do, it is my grandson Dustin. Good day, dustin.
Speaker 3:Thank you, it's good to be here.
Speaker 1:Good to be here, and so do you know why you're here. Do you know why we asked you to come to the studio today?
Speaker 3:Well, I've been told I have a radio voice.
Speaker 1:Oh, he does have a good radio voice, doesn't he? Can you do a commercial for us? Like something really cool? Come, come on, do something not in my wheelhouse.
Speaker 3:Cool's not in your wheelhouse.
Speaker 1:Well, the reason that he is here today is because our topic today is going to be um, gluten-free and celiac disease, and the reason that we are going to talk about that is because I have it, and so does my grandson, dustin, and we are testing some additional family members to see if they have it also, and so we just wanted to talk about it because there's a lot of what do I want to say? There's a lot of diseases out there that people don't even know that they have. They don't know what the symptoms are, diseases out there that people don't even know that they have. They don't know what the symptoms are. And we're just going to talk a little bit about how we figured this out, and I'm going to start first Dustin and then I'm going to kind of go over to you, because for years it just seemed so weird that I couldn't eat a big meal. Did you find that?
Speaker 3:No, I didn't. I think my presentation was a little different.
Speaker 1:Yours was a little different, so I couldn't eat a big meal. And so people would go oh you know why aren't you eating very much? And it was because I just couldn't, my stomach just wouldn't take it, and so I could only do little bitty meals at a time, could only do little bitty meals at a time, and um, and so I had that for years and years and years and didn't really even think that it had anything to do with gluten. And then one day I went to the um disease stomach disease place to get tested. I don't know what it's called. What is it called?
Speaker 1:I don't even remember the um the digestive disease center, yeah, yeah yeah, and so what happened was was I got sick when I was out of the country and I came back and they did some tests on me and found out that I have celiac disease. And so what does that mean exactly? Um, it has to do with gluten, right, dustin?
Speaker 3:Yes, yes, it does.
Speaker 1:So tell us about that a little bit. So what effects does gluten, and first of all, what is gluten? And secondly, what does gluten do to us?
Speaker 3:Well, so I'm not really an authority on the subject and I'm relatively new to this whole world. But to answer your first question, gluten is a protein found in wheat, rye and barley. What was your other question?
Speaker 1:my other question is what does it do to you, and is it the same for all people?
Speaker 3:so what it can do to you. It's a whole host of things. If you have celiac disease, there's actually over 200 recognized symptoms and these range everything from digestive issues like abdominal pain, irregular bowel habits, fatigue and low energy. You can have nutritional deficiencies due to the damage that it causes to your digestive tract and the V-line in your intestine all the way up to it's actually really common to have. Dermatitis is common, even joint pain and secondary autoimmune disease. Well, there's a high comorbidity.
Speaker 1:So there's a lot of different things that that gluten can affect, and I just want to preface this by saying we are not doctors, we are not scientists, we are just talking about how it affects us as individuals. Right, and I like to talk about it just because I didn't know. For years, I didn't know that this was my problem, other than just being weird.
Speaker 2:I thought, you know, I thought it was just quirky, and so, and I will interject here and say I do not have celiac and I eat plenty of full meals. So I'm going to be kind of quiet on this. But I have had to research a little bit because my youngest is having issues. But it also deals. You know, the gluten intolerance can really mess with your mood too.
Speaker 1:Oh, okay.
Speaker 2:So things like anxiety, depression, irritability things like that it can affect those too.
Speaker 1:I think what I noticed the most was probably the stomach pain after eating and the constipation I mean we don't want to talk about constipation, but let's face it, that's a symptom, and so that was something that I guess. I was just kind of shocked when I found out about it. I never in a million years would have thought that it was celiac disease. So how did you find out, dustin? What? What made you go get tested?
Speaker 3:Well, it was kind of a long journey for me. It started out as um it didn't even start out really as digestive issues. I wound up with severe fatigue, pain, anemia, um, I wound up with uh, neutropenia and leukopenia, which is low white cell count, as a matter of fact, and it wasn't until much later that you recommended actually getting tested that I started recognizing the potential for this. Otherwise, up until that point and I should probably mention this was four or five years of extreme fatigue that the thought never occurred to me that it could be a GI or an autoimmune disease.
Speaker 1:And so you went in and got tested.
Speaker 3:I did yep, I got the standard TTG and IgG test, which is just a blood test that measures antibodies that break down that enzyme and can actually destroy your. It's a factor in the destruction of the v-line, your intestine, as well. So having that, having those antibodies, is a significant indicator so celiac disease.
Speaker 1:I just want to point out real quick you notice that dustin's a lot more soft-spoken than than bobby and I. Bobby and I are pretty obnoxious. Dustin is pretty soft-spoken and very professional, but, um, one of the things that I found out and I'm not going to be scientific about how I I characterize this or how I describe this is that there are ridges in your stomach lining or in your digestive tract, and those ridges actually are what catches your nutrients in your body. When you have celiac disease correct me if I'm wrong. If they explain this to you this way is, when you have celiac disease, what happens is that kind of flattens out Kind of, and so you're not collecting the nutrients that you think you're taking into your body.
Speaker 3:Right.
Speaker 1:So whatever foods you're eating, whatever pills you may be taking, supplements that you may be taking, they're just kind of doing nothing because they can't be absorbed into your system. Is that how you understood it?
Speaker 3:Yeah, so what you're talking about is V-Li right? You understood it. Yeah, so what you're talking about is V-Li right? They're tiny little, microscopic sort of finger-like organisms that help to absorb those nutrients and help to break them down. And yeah, one of the most destructive side effects of celiac disease is the blunting or the destruction of those V-Li.
Speaker 1:So what can result from that? I mean, other than not getting the nutrients that you need. What else can happen to your body?
Speaker 3:Yes, so secondary autoimmune diseases are pretty common Things like Crohn's disease, things like irritable bowel syndrome but it can actually extend so severely. It increases our risk of stomach cancer, of colon cancer and even of pancreatic cancer potentially, if it goes untreated for an extended period of time.
Speaker 1:And one of the reasons why I so wanted to talk about this today is because, when we talk about stomach cancer or digestive cancer, there's so many chemicals and products that are put into our foods today that it's just very difficult to avoid cancer.
Speaker 1:Oh, absolutely the cancer rate is just sky high and it has to do with a lot of the chemicals and preservatives and sweeteners and things like that that are put into our foods. So if that's sitting in our system and we have celiac now we're kind of doubling down yeah, we're double screwed effectively.
Speaker 1:Yeah, yeah, absolutely and so our potential for cancer is even higher. Yes, and I've said this before on the show, I'm brecca positive and so I have the cancer gene anyway, yeah, and so I have to be careful. And that passes on. That passes on to my kids. My daughter has the gene, not bobby. She hasn't been tested. Dustin hasn't been tested for the gene. He, he needs to be tested. Um, and it does pass on. But the reason that we're bringing this up today is because, you know, I went years and I mean, look how old I am, I'm the boomer, right?
Speaker 2:yeah, okay, bobby, I saw you laughing down there, no face, so okay, so get this. You got like two strikes against you, mom, because you're more likely to have I'm reading this you're more likely to have celiac disease if you're white and female.
Speaker 1:Okay, I'm like'm like those are two of the two of the bad things. I'm white, I'm crazy, Okay. And plus, now you think about it, I have the cancer gene, you know the BRCA positive. I have that gene. Now I'm triple threat, right. And so I guess the reason I wanted to talk about it is because, for years and years as old as I am and I'm not going to say how old I am, but I'm old Bobby has said I'm older than the dinosaurs.
Speaker 2:You're a boomer.
Speaker 3:I'm a boomer.
Speaker 1:I mean, what else is there to say? I've gone all those years not knowing and just being in pain all the time. And so I guess what I would say is Dustin, and did you experience this? Like I would eat a meal and I could double over in pain, I mean within minutes of eating any type of gluten.
Speaker 3:That sounds intense. It's intense, yeah.
Speaker 1:I would double over and I just thought it was me. I just thought, oh, I ate too much, or that's why I'm eating these little bitty meals is because I can't eat that much and and it hurts me so bad. And I want other people to know what they're eating. I want them to know how this stuff affects them. I want I want them to know that they're eating. I want them to know how this stuff affects them. I want I want them to know that you know the chemicals in in product food. Packaged food, um is really not good for you and that that doesn't help you either. But some of these symptoms, if you have them, go get it checked. It's worth getting checked and since the cancer rate is so high, if we can eliminate that or reduce it, why wouldn't we? I mean, wouldn't you agree?
Speaker 3:Yeah, yeah, especially you're part about getting tested. You know current estimate. So the current diagnosed population of celiacs in america is roughly one in a hundred.
Speaker 2:right, it's about it's about one percent of the population.
Speaker 3:That's a lot, but the actual educated estimations are that that that number is likely closer to two or potentially even three percent. There are a lot of people who have celiac disease for their lives and are are asymptomatic, and so they go through their lives and are asymptomatic and so they go through their lives damaging their intestines, increasing their risk of things like stomach cancer and colon cancer and all these things. It can even cause eye issues. It can cause ocular degeneration, if I remember correctly. So there's a whole host of maladies that accompany this. But yeah, absolutely get tested, because the those who are far more educated on it than me state that it's in all likelihood closer to two and a hundred people have it which means that you know only 50 are getting diagnosed yeah, and, and so you mentioned ocular.
Speaker 1:So I have ocular migraines and if anybody's ever had one, they know how terrible they are. And what happens is is it's almost like a rippling across your eyes. It's not floaters, it's like a rippling across your eyes and I can't read. I can't read anything because of the rippling, and when I get a get one of those, it's really tough, and I didn't realize that it was associated with the gluten. The other thing is is I have fibromyalgia Now. Fibromyalgia is a hereditary disease. Bobby has it, my other daughter has it, I don't know who else has it.
Speaker 3:I thought I had it for a long time.
Speaker 1:And fibromyalgia is kind of a phenomenon because they really don't know what truly causes it and how to fix it. What I have found is, if I do stay off of gluten, my fibromyalgia is so much better and I and, um, anybody who has fibromyalgia. Let me just explain what that is. You know people go oh, it's just a fake disease. I said that forever. Fibromyalgia the way I describe it is if you were in a really, really bad car wreck but didn't break any bones and the next morning you woke up and you were in so much pain just from being jolted around in a really bad car wreck. That's what fibromyalgia feels like and we have it every single day, every day, and sometimes it's better, sometimes it's worse. But I will tell you that gluten has really affected my fibromyalgia. Now, one thing that Dustin has taught me through this whole process is that just because somebody says we have a gluten free menu does not mean that they have a celiac safe menu, correct.
Speaker 3:Dustin, that is correct.
Speaker 1:Let's talk about what the difference is.
Speaker 3:Yeah, yeah. So the thing with celiac disease I kind of think of it a lot. I think of it as like a nut allergy. Right, you think of a severe nut allergy and you think, okay, there can be dust in the air, there can be potential cross-contamination anywhere in the kitchen. You have to effectively apply the same logic to gluten, because it's a protein and because it's so sticky, it's not a bacteria, it's not a virus, it's not easy to wash away and it clings to porous surfaces. Things like cutting boards, things like ceramic and plastic utensils can all harbor this gluten and can actually spread to your food, even if you aren't consuming a dish with gluten in it.
Speaker 1:Okay. And so when somebody says, hey, we have a gluten-free menu, there may not be gluten in the actual food, but if they prepared it around something that was gluten sandwiches, breads, pastas, that sort of thing that's where we can run into problems. Now, I'm not as sensitive as you are.
Speaker 1:And that may have to do with my age, right, because I'm really kind of, I want to say, over it. Now I'm not really over it, but you know I've kind of gotten used to it. But with Celiac Safe, that means they have taken all the steps necessary to isolate that particular food so that you don't have that cross contamination. And I think that's important for people to know, because some people think we're just babies about it. You know they're gluten-free, they're just being a crybaby. It's just another allergy, like the peanut allergy. It causes us pain and when somebody says, hey, you know I'm gluten intolerant or I have celiac, you know kind of have a little empathy for them on that.
Speaker 3:And there's a distinction. It's important to note. There's a big distinction between a gluten intolerance and celiac disease. Right, celiac disease is an autoimmune disease. Gluten intolerance is similar to a lactose lactose intolerance, right? So gluten or, excuse me, gluten intolerance? Yes, gluten is a. It's an inflammatory agent. Regardless of whether or not you have celiac disease, it can cause inflammation in your body. It can cause potential joint pain. It can exacerbate underlying conditions, regardless of the autoimmune disease, but your sensitivity to it is not nearly as extreme as somebody with celiac disease.
Speaker 1:Okay, that's good to know, Good to know. So, anyway, bobby, what do you have to add? Do you have any of these symptoms? You know, since we have them, do you have them? Do any of your kids have them?
Speaker 2:My youngest is currently going through testing for it right now, just because of the symptoms that she is having the pain, the not able to eat certain foods, things like that. So we're just kind of ruling a bunch of things out and since you guys have it, there's a higher chance that she's got it and you know you have a higher chance if a relative has it. Have a higher chance of a relative has it. Do you ever sit and think like what relative of yours would have had it and they never would have known because there wasn't the research back then? Wow, what they would have had to go through. Because you got to think.
Speaker 2:I know, especially like with your parents and things like that they were poorer than poor, they didn't have the money to go out and you know, get to get, not only get tested, but get certain foods. You ate what you were given, right, you know if that caused you stomach pain and stuff tough, you know you got it. You got a tummy ache, go walk it off right. And how many people before you know in our family line would have suffered from things like that and never have known that it was an actual thing?
Speaker 1:what a great point. Uh, because we were dirt poor and if we had allergies, you know, it was like, well, I have allergy to hay, well, we're gonna battle hay today. So too bad, so sad, you know, or um, we were just. I always said we were too poor to have allergies yeah we had to eat and we, you know it was not like we had an overabundance of food at our house. It's interesting.
Speaker 3:Sorry, go ahead oh no, I was just going to say, even if you did, it wouldn't have mattered. In the 70s and 80s, celiac disease was poorly understood. One of the standard diets was, um, if I'm right, it's called the banana diet. It's basically a low starch diet, because that was as close as medical professionals could get to understanding what the underlying cause was okay, we didn't understand the mechanism behind the disease, yeah, and so we didn't understand how to treat it well it.
Speaker 1:You know bobby brought up how many of your relatives you think. My sister uh was in really bad health before she died Right, and she had breast cancer and she had a brain tumor from cancer and she was in a nursing home for a period of time and they had her on her back and that's the worst thing you can do for fibromyalgia. And she used to just moan and she was kind of incoherent a lot, couldn't communicate a lot, but she moaned a lot. And it wasn't until recently when we started talking about this celiac and how it affected our fibromyalgia and I thought, oh my goodness. I told both my girls. I said I think my sister had fibromyalgia because of the moaning laying on her back and I said, if I'm ever bedridden, please, for the love of God, you know, move me around. I don't care what you do, but move me around because it's so painful.
Speaker 1:But you know, even, dr Domain, when we were in Georgia here recently I had a week's worth of very, very horrible time period with the gluten affecting my fibromyalgia. I was in so much incredible pain and it was because I wasn't watching what I was eating and I knew it the minute it happened. And I told him that, and of course, he gets right on it. He wants me to, you know, pay very close attention to that on it. He wants me to, you know, pay very close attention to that, um, and so I'm very thankful that I have someone you know, you guys that all know about it and can help me with that. So what are there any other words of advice that you'd like to give our listeners? This was kind of a really serious topic today, I think, and it was. It was a good one, though, because I really want people to know that, if you're having those symptoms, get it checked. What words of advice would you have for them, dustin?
Speaker 3:Well, I guess I'd like to. I want to clarify two things in case any of the listeners do have celiac disease. Number one don't despair about the increased potential rates of things like stomach cancer and GI cancer. Studies have shown that that largely applies to individuals who aren't diagnosed until their late 40s to early 50s and after five years of being completely gluten-free and those V-Li healing in your intestine repairing itself, those numbers go way back down, much closer to the standard risk.
Speaker 3:Number two I wanted to clarify on that kitchen note so I looked it up while you were talking and the daily limit for somebody with celiac disease for overall gluten intake is equivalent to one 350th of a piece of bread, a piece of standard white bread.
Speaker 1:Wow.
Speaker 3:Which is insane.
Speaker 1:Wow, that's crazy.
Speaker 1:Yeah, it is crazy, that's crazy and that applies to spices, that applies to everything yeah, and and the last thing I just want to say is, if you do have celiac, this is how serious it is. If we do get exposed to gluten and and I'm not as good as as dustin, is dustin's really good about it? I am not as good. Um, I feel like I've had a good run and but, um, once we get exposed to it again, it can take six months to a year for that one exposure to get out of our system yeah, for me at least, even just the brain fog, it lasts a week or two.
Speaker 3:The pain and fatigue last five to seven days minimum.
Speaker 1:So I would encourage people to just read up on it.
Speaker 3:Absolutely.
Speaker 1:If you have the fatigue, if you have the pain, if you have the digestive issues, if you're having the brain fog, the memory issues, any of the vision issues, it's just kind of worth it to go in and have that test done it and eliminate it For the love of God, do not go gluten free until you have this test.
Speaker 3:I know numerous individuals people in my community who went gluten free as an attempt to understand, right to figure out a celiac disease?
Speaker 3:they would. They would omit it from their diet for an extended period of time three, four, six, sometimes even 12 months and then they would. They would omit it from their diet for an extended period of time three, four, six, sometimes even 12 months and then they would start feeling better and they decide to get tested. But you have to. You have to be presently consuming gluten for that antibody test. So if you think you have it, please don't stop consuming gluten until you have that test, because healing and going back is so much worse.
Speaker 1:Yeah, it is, it is. And yeah, I guess I don't. I don't want to add to that other than you know. Just if you feel like, if you might have it, if you've, you know, just just go in and get the test done.
Speaker 3:It's a simple blood test. If you test positive, the gold standard is an endoscopy.
Speaker 1:Right.
Speaker 1:But yeah, I mean standard is an endoscopy, right, um, but yeah, I mean to get the blood test, if nothing else, yeah. So I be honest, I think that's about all we have for today on that subject. We really appreciate you being here with us in the rabbit hole studio and I'm so happy that we're back. I can see bobby's smiling face down at the other end of the studio yay, yay, and I sound a lot better. Now, too, you do sound a lot better. I won't say you look better, but you do sound better. What do?
Speaker 2:you think, bob? Yeah, I think that's uh all the informative insanity that we have for today. Um, but we do appreciate you joining us here. Finally, back at the rabbit hole studio, be sure to follow us and like us and share us with your friends. And if you don't really like us, hey, share us with your enemies. We'll we'll take them too. Um, hey, if you have a topic you want to talk about, if you got constructive criticism, anything like that, uh, our email is boomerandjenexer at gmailcom. You can find us on Facebook at A Boomer and a Gen Xer Walk Into a Bar, the official podcast page. If you have hate mail, well, you know where you can put that. So, until next week, I'm Bobbi Joy and I'm Jane Burke and you're stuck with us, peace out.
Speaker 2:Later.