Two Voices, One Vibe
Join Nikita and Lina, two best friends with endless curiosity and plenty to say, as they explore everything life throws their way. From hilarious stories and pop culture hot takes to life lessons and the occasional deep dive, no topic is off-limits. Whether you're in the mood for a laugh, a fresh perspective, or just some fun company, this podcast feels like a chat with your bestie. Get ready for unfiltered conversations, tons of laughs, and a whole lot of heart!
Two Voices, One Vibe
From Confusion to Clarity: Lina's Celiac Experience
Imagine having your entire world shift because of something as common as bread. Lina joins us to share her incredible journey of living with celiac disease for over 23 years, navigating the complexities from her teenage years through adulthood. Her story is a poignant reminder of the importance of understanding and managing this autoimmune disorder, as she candidly discusses the initial confusion and challenges she faced, including chronic migraines and the social hurdles during occasions like Halloween. Lina's experiences highlight the necessity of a strict gluten-free diet to prevent malnutrition and the vigilance required in avoiding hidden gluten sources.
Discover the ins and outs of celiac disease diagnosis through Lina's personal anecdotes, from mysterious health issues in childhood to the eventual diagnosis that explained her persistent symptoms. She recounts her struggles with chronic headaches and stomach pains, leading to numerous doctor visits and the eventual realization that opened the door to managing her health. Her encounter with a teacher, who first introduced her to the concept of celiac disease, underscores the power of awareness and the critical role it plays in understanding one's health journey. This episode uncovers the distinctions between gluten intolerance, allergies, and how each impacts social interactions, especially when dining out.
Lina also tackles the frustrations with misconceptions around gluten-free diets, highlighting the challenges faced when others perceive it as a fad or a weight loss strategy. We delve into why it's essential to differentiate between those who genuinely need a gluten-free diet for medical reasons and those choosing it as a lifestyle choice. Moreover, the episode emphasizes the importance of self-advocacy and being attuned to your health and the health of loved ones. Through Lina's story, we encourage listeners to trust their instincts, seek accurate diagnoses, and advocate for themselves, backed by the support of family and informed choices. Join us in this enlightening episode that offers comfort, guidance, and a sense of community for anyone impacted by celiac disease.
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Hi, I'm Nikita and I'm Lina. We're two best friends with endless curiosity and plenty to say.
Lina:Join us as we dive into everything and anything life throws our way
Nikita:From hilarious stories and pop culture, hot takes to life lessons and deep dives.
Nikita:No topic is off limits. Whether you're looking for a laugh, a new perspective or just some fun company, this podcast feels like a chat with your bestie.
Lina:Get ready for unfiltered conversations, lots of laughs and a whole lot of heart. This is Two Voices, one Vibe.
Nikita:And we're back. Welcome back to Two Voices, One Vibe. Today's episode is going to be about celiacs and we're gonna talk to Lena here about her journey getting diagnosed, her symptoms that she experienced and what life is, in general, dealing with celiacs right?
Lina:Yeah, I think a lot of our listeners and viewers might be able to relate, since this has since blown up. It's been 23 years that I've been struggling with this disease, but I know it's been that long. It's been that long before people even knew what celiacs was. So we'll cover all of that. But hopefully some people will be able to relate Once it's kind of in the front of your mind and you know somebody who has it all of a sudden you start to see oh this is gluten-free, that's gluten-free you kinda start to see it everywhere.
Nikita:And its not just a fad thing, I know I've ventured down the gluten-free rabbit hole, but not for the reasons that you have to be gluten-free.
Nikita:So I want to just kind of focus today specifically on celiacs. And I want to start with maybe you can explain to our viewers and our listeners what exactly is celiacs.
Lina:Yeah, absolutely so.
Lina:Celiac disease is an autoimmune disorder and what it does is it attacks your villi.
Lina:So somebody who is gluten intolerant which is different than an allergy so an intolerance is somebody whose body literally cannot break down gluten. So gluten is a protein that's found in wheat, rye barley, all sorts of different types of grains, and what it does is it breaks down your villi. So villi are these small, hair-like projections that are on your small intestine and what the villi do is normally they absorb the vitamins and nutrients from the food that you're eating so that you're nourished. But somebody who has celiac disease confirmed celiac disease not just kind of you know, an aversion to gluten, but an actual intolerance is their villi cannot break down the gluten and the gluten kills the villi, so the villi die. It takes seven days for them to be regenerated and the only way they are regenerated is if there's no gluten in your body. So you have to be on a complete gluten-free diet. So for those seven days, as they're trying to grow back, your body's malnourished and malnutritioned and you're really not getting any of the vitamins or nourishment that's coming from the food that you're eating.
Nikita:Okay, and now my question to you is for somebody who is not educated to the way you are on gluten what is gluten?
Lina:Okay. So gluten is actually the protein itself, and the easiest way to explain it is it is what makes things sticky in dough, right? So a lot of times when you try to have anything that is gluten-free, you're like wow, this is really crumbly, it's falling apart. Whether it's cookies, whether it's pizza crust, whether it's bread, it's really crumbly. So gluten is a protein that is sticky and you can actually buy it in the grocery store. It's pretty funny.
Nikita:Oh, I didn't know that.
Lina:When you walk down they have an entire bag. It's like vital wheat gluten and I'm like, wow, it's a whole bag of exactly what will kill me. So it's what helps make things sticky. But gluten is found in so many different products. So a lot of times you think carbs, you think things like that cookies, cakes but it's also found in things that you would never even think. So there's wheat in soy sauce and a lot of different sauces or soups that people make when they kind of create a roux with flour. You can't eat that. Anything that is breaded, fried chicken, any types of gravy, anything like that. So it's really difficult. It's hidden in a lot of different things that you think it wouldn't be hidden in Chinese foods, thai food, because they use a lot of soy sauce and things like that. So you have to be really vigilant in knowing what you can and can't eat and kind of working your way around it.
Nikita:Do you find it difficult to avoid gluten?
Lina:Not anymore. So when I was first diagnosed, I was 14 years old and my diagnosis actually came down on Halloween.
Nikita:Oh my goodness, really
Lina:I couldn't even eat anything.
Lina:So I didn't even go trick-or-treating because I was like I'm not even going to know what I can and can't eat. So for probably the first two years or so my parents were really good at making things that I was comfortable eating and that I liked, but we didn't venture too far because we didn't really know what we could or couldn't do and at that time you couldn't just go to the grocery store and buy gluten-free pasta or gluten-free bread, because it wasn't a thing. We went to restaurants and we would ask to speak to the chef and the chef would come out and say I can't have gluten. And he'd go, oh, there's no sugar in here. And I'm like, well, that's glucose, and now I'm going to die. I'm definitely not going to eat here.
Lina:Because if you're the chef you don't know the difference I am not going to eat here and knowing what to look for and knowing what hidden gluten looks like, and you know hydrolyzed wheat, protein and the different types of words that you're looking for different anti-caking agents so, believe it or not, some of the different like paprika, onion powder, garlic powder they put different caking agents to make sure that they don't ball up those spices. Some of those can have gluten in them. So now that I know what I'm looking for, and I've been dealing with this for more than half of my life. At this point I'm just so used to it, so it's second nature to me. But to somebody who's just recently diagnosed, I can see how it could be really scary and really overwhelming to try to figure out what you can and what you can't eat?
Nikita:Yeah, absolutely so. Why don't you tell us before we get into you getting diagnosed, why don't you tell us what some of your symptoms were that made your parents and you, for that matter, even ventured down the road of going to the doctor and trying to figure out what was, quote, wrong with you?
Lina:Yeah, so I had a slew of symptoms, and celiac disease is one of those interesting things where it could present itself in a number of different ways. So some of the things that I was struggling with was really bad migraines.
Nikita:Okay.
Lina:I would get these migraines to the point that I would have to go to sleep. They were so painful and I would just kind of black out for a couple hours and I wouldn't even remember what happened because the pain was so intense. I would also have really bad gastrointestinal issues. So between having diarrhea, having gas, vomiting after I'd eat, the cramps were so intense. The only way that I could best describe them is what contractions are like when you're having a baby
Nikita:oh, wow, okay.
Lina:So like literally the muscles in your stomach start to tense up and you can't move. It even hurts to breathe,
Nikita:oh, wow.
Lina:So most of the time I'd be laying on the floor or laying on my bed in the fetal position on my left hand side I would a lways get sick after lunch, because what does every kid eat for lunch at school?
Nikita:Sandwiches,
Lina:sandwiches, every day Right.
Lina:Yeah, so every day, you know, within half an hour after lunch, I'd be at the nurse's office and the nurse is always asking me what class do you have after lunch that you don't want to go to? Why are you always in my office?
Nikita:Right,
Lina:Because I'm sick. You know the same thing. After dinner, my brother and I would always have to switch off different chores. So, whether it was cleaning the table or doing the dishes or taking the garbage out, I'd always be in the bathroom when I'd be sick and my father would be like. You know, Lina, it's not fair to your brother that you're always in the bathroom being sick while he has to do all the chores and I'm like, but I'm actually sick.
Lina:So my mom was really the only person that believed me and she said I know my kid Um, and she started taking me to different doctors to try to diagnose me.
Nikita:And at this point, this is when you were 14?
Lina:No, this was when I was eight.
Nikita:Okay, so this started way back when you were young,
Lina:yeah, so all the pain and different issues started when I was eight. Um, and at the time I remember my mom saying to me you need to tell me what hurts worse Is it your head or is it your stomach? Because we can't focus on both, because we've been going to all sorts of different doctors and specialists up and down the East coast trying to figure out what was going on. Um, so at that point I told my mom. I said you know, the headaches are probably the worst part, because I kind of black out and I'm not even present. I don't even have any recollection of what's going on.
Lina:The stomach pain is awful, but at least I'm conscious. So my mom started taking me to different neurologists and they basically diagnosed me with chronic daily migraines. So they put me on a preventative medication that I would take every day to try to keep the migraines at bay and then when a migraine would come on, I would take this other type of pill that would try to stop it in its tracks. So I was kind of really doped up on this medication.
Lina:It was pretty high dose stuff for adults when I was eight years old and it really did help with my migraine. So it really kind of stopped that piece of it. But then my stomach was just getting worse and worse and worse.
Nikita:Oh, my goodness, that just sounds absolutely terrible and I don't know, um that I would want to deal with that. So kudos to you and your mom for being able to manage that. Um, now, after experiencing all these symptoms, did you or your mom maybe not so much your dad, but was celiac even on the radar? Or were they just thinking you know you were playing or you know making it up, or anything like that?
Lina:So a lot of these different doctors were thinking different things. So some doctors thought that I was lactose intolerant, so we had, you know, tests and all sorts of stuff for that. . But, being with the type of cuisine that I grew up with, I was eating a lot of things that had sour cream and cheese and things of that nature and that never seemed to bother me. So they did test me for lactose intolerance. That wasn't it. I did have some people trying to tell my mom that I had an eating disorder and then I was making myself grow up and I was making myself sick and my mom was saying no, I know my kid.
Lina:I know my daughter.
Lina:She likes to eat, she enjoys food, and she's not doing that. That's not what it is, and there were some people who were just kind of saying it's a behavioral thing, we can't help her,
Nikita:okay.
Lina:So it wasn't until years later when I finally went to a gastroenterologist and I started getting tested for all sorts of different stuff, but celiac disease was never at the top of the list. Nobody actually knew what celiac disease was back then, because this was back in the early 2000s where it really wasn't that prevalent and it really wasn't on anybody's radar. So I hadn't even heard of the term celiac disease until my freshman year of high school.
Nikita:And you were about how old at this point?
Lina:I was about 13 years old,
Nikita:okay.
Lina:So back then it was totally socially acceptable for kids to bring in cupcakes and cakes and different things to celebrate your birthday, whereas now everything needs to be, you know, nut free, allergen free, this free, so you?
Nikita:My kids aren't even allowed to bring in food.
Lina:Yeah, who can't even go into the school anymore?
Lina:So back in my freshman year of high school somebody had come into my English class with cupcakes for their birthday and was passing out the cupcakes and I remember my English teacher declining a cupcake and I'm like how could you say no, it's a cupcake. And she's like, oh, I can't eat it. You know. She's like I have something called celiac disease and I said, well, what's that? And so she kind of explained it in layman's terms a little bit and basically said you know, I can't have flour or wheat, and you know I'm basically allergic to it, which isn't you know the right nomenclature, but in layman's terms I can understand this, this
Nikita:Right to dumb it down, so to speak, for a 13, 14-year-old.
Lina:Right and I remember saying to her oh my God, I would never be able to do that. If I did that, I would just eat it anyway, because I wouldn't know how to live without it. Not knowing that this is actually what I was within a year of being diagnosed with and struggling with.
Nikita:Oh my gosh, that's just crazy. So you went to a gastroenterologist. I can't even say the word A gastroenterologist,
Lina:gastroenterologist
Nikita:Yep, that one too.
Lina:Yep, I did so. We had been going to specialists all up and down the East Coast, as I was mentioning, and it was actually a GI in my hometown where I grew up who diagnosed me.
Nikita:Okay, and how did they go about diagnosing you?
Lina:So it was a bunch of different tests that I ended up having Back then again, because this was so fresh and this was so new, they didn't do a blood test first to see if you had genetic markers, which would be the first step nowadays, and so back then, they actually sent me as a 14 year old girl For I didn't ask me I had to enter Oscar bees and I had a colonoscopy.
Nikita:Oh my god.
Nikita:So these were all really invasive procedures where I had to drink laxatives, I had to get cleaned out before I went to the hospital for these procedures to get tested. They would take biopsies of my tissues in my bowels and my small intestines and they would basically test to see what was going on. They were looking for parasites, they were doing blood work, they were doing all sorts of things. So when the very first test came back, my numbers for celiac disease were so high off the charts that they said this can't be. We need to repeat the test because the numbers are skewed. So I said, okay, do I need to prepare? Do I need to fast? Do I need to do anything? No, no, no, just come back, keep eating whatever you're eating and come back. back.
Nikita:So it took them testing me four separate times with four separate biopsies to come back, and it was Halloween when I was 14 years old. I was a sophomore in high school. They came back and said yep, you have celiac disease. And I remember thinking what exactly is that? I had heard the term because of my English teacher a year prior, but I didn't really know what it was, and my GI was learning with me because I was the very first person that he diagnosed.
Nikita:Oh, my goodness, that's crazy. So now you get diagnosed with this celiac that we don't know what is essentially. How does your life change at that point?
Lina:So obviously dietary, it changed huge. I didn't know what I could or couldn't eat. So potatoes everybody who knows me, potatoes are my favorite food in the whole wide world I knew I could eat potatoes so that made me super happy. I also knew that I could eat meat and fish so long as they weren't prepared with any sort of breading or breadcrumbs or anything like that. So for probably about the first two years I was eating meat, fish and potatoes and vegetables.
Lina:But aside from that, socially it changed because whenever you go to school and it would be, you know, a Friday hey, we're having a pizza party or hey, it's somebody's birthday, here's cake.
Lina:So I was always kind of left out of those things. And what ended up happening is people started to feel bad, and it still happens to this day where someone said, well, I don't want to eat that in front of you and make you feel bad. Now it's like please, I've had this for so long, it doesn't even phase me, I'm not even missing it at all, you know. But back in high school it was a really weird feeling. And I remember the very first field trip that we went on my sophomore year, um, and we went to the courthouse and we I was a criminal justice student, one of the criminal justice classes so we went to go watch sentencing and afterwards we all went to mcdonald's and I remember thinking like, oh, it's okay, you know, I'll just get a burger without the bun or something. And I remember each kid going up and ordering and I waited till the end and I was with my teacher who was going to pay for everything. So at the very end I went up and I said you know, I'd like to have a cheeseburger without a bun.
Lina:And I remember looking at me go what? And I'm like cheeseburger w I w I wheeseburger heeseburger ca , but I just don't want the bread. I'm like, well, why don't you want the bread? And I'm like, well, because I can't eat the bread. And they're like, well, can't you just take it off? And I'm like, no, I can't take it off. And they're like well, we don't have a button on our screen to say no bun. I'm like, okay, well, the other students are there and everybody's looking and everybody's wondering like, what's going on and why are you making a big deal?
Lina:and I started to feel really uncomfortable at that point because now all the attention's on me and I don't want everybody to know what's going. What's going on? And then people start asking all the questions well, what happens if you eat it? Are you going to die, you know? And it just becomes this thing that you don't want focused in on you, sure
Lina:And I remember my teacher just going up to the person with my thumbs and going, can you just hand her the hamburger in her hand? Like what do you need to do to make this happen and not make this kid feel bad? Right, and I just remember at that point being like I don't even want to eat. So those were kind of like the biggest hurdles to get through. And then answering those questions whenever you were in a social situation where you couldn't eat anything. And then everybody feels that I'm so sorry, I no, I didn't make you anything. Well, I can get you something. Do you want me to get you something? And then you feel bad because you feel like you're putting them out. And then it just kind of became this thing where I always eat before I go anywhere, so that's kind of my thing. And then people are like, well, why aren't you eating? Why aren't you eating? And then it becomes you know, are you dieting?
Nikita:Not even gluten intolerance. It's essentially an allergy, correct.
Lina:So the difference between an allergy and an intolerance is that an allergy can be counteracted. So think about somebody who has a peanut allergy and they have an EpiPen. So their epinephrine basically undoes the damage done by the allergen. So you kind of get a shot in the leg or you get the shot in the nose. Now they have the nasal spray and somebody is better, Somebody who has an intolerance. There's nothing that can counteract it.
Lina:So there's no pill that I can take. There's no epinephrine that's going to make it better. Basically, it needs to run its course.
Nikita:So you have an intolerance, not an allergy.
Lina:Correct Okay. So a lot of times I'll just tell people know I can't have flour or wheat because I'm allergic to it. But, people who actually understand it know it's a gluten intolerance.
Nikita:Right, okay Now, with you said, you've been dealing with this, obviously since you're 14 years old, how difficult is it for you to go out to dinner with friends and find something to eat?
Lina:Yeah, so now I pretty much figured it out. I mean, anywhere I can go, I could really even get a salad, if that's really all I can do. But the most frustrating part is places that just aren't educated about it. And when you ask them, you know do you have a gluten-free menu? Or is there somebody who could talk to you about gluten-free options? Like, well, you can have salad. I'm like, okay, but you also have grilled chicken, so I can have that too. And you also have steak, so I can have that too. And like, hmm, are steaks not gluten-free? And I'm like, really, do you flour your steak? Like what do you do? I'm not asking about sauces or gravies, I'm just talking about the meat itself.
Lina:Right, so just the people who are not educated about it. You know, and I feel like you should know, so that part can get a little frustrating, but I can always find something that I can eat. Now you see a lot of you know the major chain restaurants have gluten-free menus or you'll see they'll have like a little GS for gluten sensitive. Most places won't call it gluten-free because you don't want to say anything is free of gluten with cross-contamination. So there's a certain standard that you have to have making sure there's a certain parts per million of gluten that are not in the food in order to be considered gluten-free. So a lot of places won't make the claim that it's gluten-free but they'll say these are made without gluten-containing ingredients or this is safe for somebody who is sensitive to gluten.
Nikita:For someone who has celiacs like yourself. If you eat something that is gluten-sensitive, are you okay with that or will you steer clear of something like that?
Lina:Yeah. So it's really a judgment call. There are some things that are no-go. So you're not supposed to eat anything that's prepared in a shared fryer. So let's say you go to a fast food place and they fry French fries which would normally be gluten-free, with chicken nuggets which are breaded right. So you're not supposed to eat that because it's in the same type of oil. But let's say they use an oven where they're baking things that have gluten versus baking things that don't have gluten. You know. So you really are supposed to steer clear of any of these things, but you need to live. So you know I kind of take my chances.
Lina:Every three years I have to go back to the GI and I have to have these tests to see how my insides are looking, because, basically, repeated exposure to gluten can do different things to your insides. So even if you're not feeling it or you don't know about it, you know you can have ulcers, you can have inflammation in the lining of your stomach, it could lead to diabetes, it could lead to esophageal cancer. So it can do all sorts of issues and damage to your insides. And because I've had it so long, they don't know what the long-term effects of celiac disease are because people have really just been getting diagnosed within the last 10, 15 years and I've had this over 20 years now. So they're doing different sorts of tests on me to understand what are the types of things other people may have to deal with in the future when you've had prolonged exposure to gluten. For two plus decades.
Nikita:That's crazy. So now that you've been diagnosed with the celiacs for so long, do you have a go-to let's say, pizza that you enjoy, or a go-to restaurant that you enjoy that you don't have to think twice about?
Lina:Yeah, so there's a lot of different places that have full on gluten-free menus. There's actually a place about five minutes from where I work and it's an entire gluten-free restaurant.
Nikita:Oh nice.
Lina:Anything I want on the menu I can eat, which is amazing.
Nikita:And you don't have to worry about it, don't think about it.
Lina:I don't have to worry about anything. They bring bread to the table. It's gluten-free bread, you that has a sauce gluten-free, all the pastas gluten-free, all the desserts are gluten-free. It's almost like me going to Disney World.
Nikita:Nice
Lina:I can have anything I want, which is incredible. So those are really my favorite. And then a lot of the chain restaurants. They now have gluten-free options, so they'll have gluten-free buns for sandwiches, things like that, or you know, they'll list that something can be modified to be made to be gluten-free. So that's amazing. I figured out all my different favorite brands of pasta, my favorite brands of bread, my favorite muffins. Oh my gosh, shout out to Trader Joe's. They have the best gluten-free muffins in the world. There's cinnamon coffee cake muffins and I don't eat coffee. I don't like coffee. There's actually no coffee in them.
Nikita:You can't eat coffee,
Lina:yeah Well.
Lina:I mean anything coffee flavored, right, so like a tiramisu type thing, or um you know, coffee flavored ice cream, or even like espresso martinis.
Lina:I don't like the flavor of coffee. Oh, it totally grosses me out. Um, but I've read the ingredients and there's no coffee in it. I think they just call it coffee.
Lina:Yeah, like a coffee yeah oh, it's my jam best things ever um
Nikita:what about pizza.
Lina:so pizza, shout out to domino's, the first major chain that has gluten-free pizza, which is amazing. The pizza is actually really good too. They do have a disclaimer that says you should not eat it if you have celiac disease because it's prepared in a common environment with other things. But it's the same thing if you go to your local pizzeria and they have gluten-free pizza, they're making regular pizza too. So you really do need to use your best judgment and see how it affects you, because sometimes you have people like my brother.
Lina:My brother has cell life disease as well, but he's asymptomatic, so he doesn't feel any of the symptoms, but he has the same internal damage that happens to him. So, depending on your sensitivity level, you may not know that you're being glutened when you are. I'm actually very sensitive to it. So if I were to get Domino's and somehow there were some bad cross-contamination within 20 minutes of me eating, I would know for sure I've been glutened. But knock on wood, I have not gotten sick of eating Domino's pizza. I will order it when the hunger strikes at 1230 at night and I will eat some gluten-free buffalo chicken pizza in my bed, and nothing makes me happier.
Lina:Yeah, pretty amazing.
Nikita:What are some pet peeves of yours regarding celiacs and the way people you know just interact with you or interact with people in general who have celiacs?
Lina:so my absolute biggest pet peeve is when somebody finds out what I have and I tell them and they're like, wow, so you can't eat cake, you can't eat pasta, you can't eat bread, you can't have desserts, and they're like, wow, I wish I had that because I'd be thinner.
Nikita:Oh, that's just insensitive.
Lina:It's I think it even is a step above insensitive and it's just ignorant, you know, because this is an autoimmune disease, right? So it's like having diabetes. Do you also wish you had diabetes so you couldn't have sugar? Why don't you just wish you had some like willpower and some self-control so you can just watch what you're eating if you want to be healthier? Or why don't you start exercising if you think that's what you're eating if you want to be healthier, or why don't you start exercising if you think that's what you need? But to say that you wish you had something that you know I'm going through that causes a whole host of other issues.
Lina:And it's related to a lot of things.
Nikita:They don't know how miserable you feel when you do get gluten.
Lina:Right and the effects that it's had and the surgeries that I've had because you know it's eaten at the lining of my stomach, because I ended up having a hiatal hernia that needed to be repaired, and different things that have happened over the years because of celiac disease. So yes, it's very insensitive but it's also pretty ignorant to say something. So that's like my biggest pet peeve. My other one is when people think they are gluten-free but they're really just doing it because they think that it's gonna be healthier. And you have to think gluten, like I was explaining earlier, is the sticky part that holds things together. So when you don't have that and you're trying to make a gluten-free pretzel or a gluten-free bread or a gluten-free cookie, you're putting a lot more crap in there to get it to stick together.
Lina:So it's not essentially healthier when you're doing a gluten-free replacement of something that naturally has gluten in it. It's never healthier Eating gluten-free and just eating healthier in general. So things that are naturally gluten free, sure that's healthy, because you're eating meat, you're eating fish, you're eating vegetables, you're eating everything kind of plain and raw like a regular raw diet. That's one thing. But when people are going out and buying gluten free bread and saying I'm doing this because it's healthier. That's not healthier and they're just not educated about it.
Lina:And people like that make it harder for people like me who actually have celiac disease, because you know they'll take bread off of something and they'll eat the inside. When I can't do that, and when I tell somebody, you know, if a server brings something to the table and I said I'm so sorry that I asked for it without the bread because I can't eat it, for them to just kind of take it off in the back and bring it back to me and I don't know now because they saw somebody else do that and it was okay for them, but they didn't actually have celiac disease like I do. So those are kind of my two biggest issues People who are making it seem like it's a fad diet or it's really not that big of a deal.
Lina:And then the people saying, well, I wish I had that, because I wish I was thinner, I wish I was healthier, I wish whatever it might be.
Nikita:Right. Do you have any other recommendations or ways to go about bringing it up to their to people's doctors if they think they might have, whether it be celiac or just another kind of GI issue? Yeah, how would you go about bringing that up to your doctor?
Lina:Absolutely so with celiac disease in particular, it's genetic, so it's, you know, somewhere in the family line. The only thing that's really difficult is because it's now just starting to really become popular is you might not know if your grandparents had it before they passed, because they had never been tested for it. So if you are interested in getting tested for celiac disease, the number one most important thing is to not stop eating gluten,
Nikita:really?
Lina:Yes, because it takes seven days for gluten to be entirely out of your system. So if you stop eating gluten for a month and you're like, wow, I feel great, I should get tested and see if this is what it is, and you have no gluten in your system and you get tested, there's no gluten for your body to detect. There's no issues going on in your body because for those seven days that it's been out, your body's been healing itself. So there's no way to detect you have a problem. So if you really do think you have a problem with gluten and you want to get a blood test, so there's two different genetic markers that you would get tested for. So if you have the possibility of having celiac disease, you would have to have at least one or both of those markers. If you don't have either of them, it doesn't even make sense to go further and have a biopsy done, because you can't possibly have it without having one of those two markers. Now it's totally possible that your blood work comes back and you have one or both of those markers.
Lina:Your celiac disease may not be active. So basically, my daughter she was having some stomach issues so we had her tested. She has both of the markers for celiac disease. She had the biopsy done and her celiac disease is not active. So it could be at some point in your life where you have some major life changes.
Lina:You could go through stress, you could go through puberty, you could go through stress, you could go through puberty, you could go through menopause, you could have a baby. It could be something major that happens to your body that activates the celiac disease. Okay, so you can have both of those markers and live your entire life and it never become activated or it could become active at some point. So luckily, my daughter she's 16 now. She doesn't have any symptoms, her celiac disease isn't active, she has those two markers. So it may happen one day for her.
Nikita:Sure,
Lina:I pray to God it doesn't
Nikita:Absolutely,
Lina:but that's the first step. So I would just say you know, don't stop doing what you're doing, go get your blood work done. If you have those markers, kind of take it from there.
Nikita:Yeah, that's crazy. Now, if it's okay with you, I want to invite our viewers on YouTube and our listeners, if they have questions, that they can definitely reach out, whether it's via email, at to the number two voices one, the number one, vibe, at gmailcom. You can also find us on Instagram and on TikTok , excuse me, at two voices, one vibe. Again, that's the number two and the number one, and Lena can get back to you with any questions and if she doesn't have the answer, you know we can direct you to your doctor, because neither one of us are doctors. Granted, you've dealt with this your almost entire life at this point, but we're not giving medical advice?
Nikita:Yeah, we're not giving medical advice.
Nikita:You know we're just sharing Lena's story because she's been through so much, you know, and we've been friends now eight, nine years and it's an ongoing joke between us. But we have that relationship where you know I can turn around and say to her don't eat this, you're going to die. Yeah, you know, but I don't do that to just anybody. So if you're having these issues, definitely reach out to your doctor, get yourself tested. If you have questions, again, you can email us. Catch us on TikTok or on Instagram. Lina, do you have anything else you might want to say or suggest or anything else in general regarding celiacs and being gluten-free and whether it's whatever you might have?
Lina:Yeah, so, just as an aside, I know I shared some of the symptoms that I have, but celiacs can present itself in a wave of symptoms. So I've met people who get seizures from having celiacs. I've met people who get skin issues. They develop psoriasis. So even if you know you're experiencing something very different than the way that I explained it, it still may be celiac presenting in a different way. Um, so, you know, don't think that just what I went through in my story and how I experienced it is, you know, comprehensive of the ways that celiac can present itself. So there, are different ways.
Lina:And then if anybody is newly diagnosed or they're looking to be, you know gluten-free or somebody in their family is and they want to make something, I have really great ideas for recipes my favorite brands of pasta, my favorite desserts, some of my favorite restaurants so happy to share any of that information. If anybody wants to send an email, as Nikita had mentioned, the number two voices, the number one vibe at gmailcom Be happy to share all my recommendations and just want everybody to stay healthy and stay safe and make sure that if there's anything going on and you know it's not you be your biggest advocate and be your biggest cheerleader. Because if it weren't for my mom pushing the doctors and pushing my dad and pushing the school nurses and pushing everybody who said you know, no, your daughter's fine, there's nothing wrong with her who knows how long it would have taken until I was diagnosed and who knows how much worse things would have been by the time that they caught it?
Lina:Yeah, absolutely so make sure you're listening to your kids. Make sure you're listening to yourself. Nobody knows your body better than you do.
Nikita:That's the truth and you know I say that all the time. Yeah Well, thank you for sharing your story with us.
Lina:Thank you, guys for listening
Nikita:and again, if you have any questions, you can email us at two voices one vibe at gmailcom, and you can catch us on Instagram and on Tik TOK at at two voices, one vibe until next time. This has been Lina and Nikita on two voices, one vibe. See you next time.
