The Food Allergy Brain Episode 11: Lex Decker

Content warning: this episode contains discussion of eating disorders. 

This week on The Food Allergy Brain, Mia sits down with Lex Decker, the creator behind NYC But Gluten Free, one of the most vibrant and trusted gluten-free communities on the internet.

Lex has been living with celiac disease for 17 years, diagnosed at just 10 years old, and she does not hold back in this one. She opens up about what it was really like growing up with celiac before gluten-free options existed, the social isolation of always being the one who couldn't eat what everyone else was eating, and why she actually kept eating gluten in high school and college just to feel normal. She also gets into the very real fear that comes with dining out when your health is on the line, how she handles restaurants that get it wrong, and the accountability she holds herself to as a creator with a platform.

Lex opens up about her eating disorder journey and how celiac disease played a role in it. This is one of the most honest conversations The Food Allergy Brain has ever had, and Mia shares something personal too. If you have ever felt like you were doing this alone, this episode is going to remind you that you are not.

Lex Decker's handle: 

Instagram & TikTok: @nycbutglutenfree

Find Mia Silverman (Allergies with Mia): 

Instagram & TikTok: @allergieswithmia 

Website: allergieswithmia.com

Transcript

SPEAKER_01 0:01

Welcome to the Food Allergy Brain. I'm your host, Mia Silverman, Food Allergy Advocate, Content Creator, and Master Student in Clinical Psychology. This podcast explores the mental and emotional side of living with food allergies through conversations with experts and people doing important work in this space. Before we begin, please remember that everything discussed on this podcast is for informational and educational purposes only. It is not medical advice. For questions about your own health, food allergies, or treatment, always consult with a qualified doctor or medical professional. I also want to provide a content warning that this episode contains discussion about eating disorders. So please proceed and listen with caution and care. For today's episode, I'm so excited to welcome Lex Decker, the creator behind NYC The Gluten Free, who many of you probably already know and love from her food content across Instagram and TikTok. Lex has been living with celiac disease for 17 years and has turned what started as a spam account into one of the most vibrant gluten-free communities on the internet. In this episode, Lex opens up about being diagnosed with celiac at just 10 years old, what it was really like growing up without the options we have today, and the very real fear that comes with dining out when your health is on the line. We also get into the mental health side of living with celiac, how she approaches accountability as a creator when restaurants get it wrong, and what she would tell her younger self, knowing everything she knows now. And without further ado, let's get into today's episode. Well, Lex Decker, welcome to the podcast. Thank you. My first celiac guest, which is super exciting. I feel honored. So thank you for being here today. For those that maybe have not heard about you before, learning about you for the first time, could you share a bit about yourself, your celiac journey, and kind of what got you onto social media?

SPEAKER_00 1:47

Yeah, so um my name is Lex. I run the account NYC Book Gluten Free on all platforms. It was a little happy accident. It started as a spam account. Um, yeah, and I just started posting and people started like asking questions and commenting on things. And then I kind of realized there was like a whole world of food influencing that I didn't know about because I knew of like sister snacking in Chew York City, but I didn't realize that there were a ton of other people out there. And once I have this problem where once I like do something, I need to decide if I'm not gonna touch it or I'm gonna go balls to the walls. And clearly we know which route I took. Yes. So yeah, that's kind of what happened, but it all came from the fact that I have celiac disease, which I was diagnosed with 17 years ago. So one of the I guess worst things that could happen to me ended up bringing all this. So I guess I've turned lemons into lemonade.

SPEAKER_01 2:42

You sure have. You sure have. I mean, they're really impressive.

SPEAKER_00 2:45

I don't know. Um, but yeah, so that's kind of how NYC what gluten-free came to be. I just can't do anything unserious.

SPEAKER_01 2:52

No, I love that for you. I mean, your the continue post is incredible and it's so cool, like seeing your account grow and the things you're doing. So just congrats on all your amazing accomplishments. You were just like on the news too recently, or like on like some like media. Yeah, I was on the news last week.

SPEAKER_00 3:05

So that was crazy.

SPEAKER_01 3:07

What was that? Tell me that what was that like real quick?

SPEAKER_00 3:10

Um, I didn't prepare for it at all. I went off the cuff because I feel like that was the best way. It was literally five minutes. We were rolling and that was it. So I blocked out. But I watched it over and it was great.

SPEAKER_01 3:21

And you were natural. I watched it, it was like I'm like used to it.

SPEAKER_00 3:24

Yeah, they let me show like the three of my favorite like foods that are crazy and you wouldn't believe is gluten-free. So, of course, Bub's bakery, of course, cocoa doc, and of course deluxe.

SPEAKER_01 3:31

Like course, duh, duh, especially bubs. Like, that's the best of the best. Love Bubs. Well, I'd love to get into you know, just living with Celiax because you've had it for 17 years, which is a long time. And so you were diagnosed at 10 years old, correct? Oh my gosh. And so, kind of walk me through what that was like. Like, did you like before you got diagnosed? Like, what were you experiencing? How did you get the diagnosis in the first place? Like, just give me that full rundown.

SPEAKER_00 3:57

So I was sick my entire life, and I don't know if everyone knows how celiac disease works, but you essentially have it dormant in your body, and it's stress to the body or trauma to the body is usually what triggers it. So that could be childbirth, that could be getting Lyme disease, mono. For a lot of people, it was COVID, and research is starting to come out about this. But as we know, the healthiest people were getting sick out of nowhere, and so our bodies just didn't know what to do. So it triggered in a lot of people, um, divorce, things like that, like quite literally stress. So I have no idea what my event is. All I know is that I was very sick my entire life when I was younger. I had all of these allergies, a ton of food allergies. Um, I couldn't breathe. I was in the children's hospital of Philadelphia all the time. They thought I had cystic fibrosis. I was on a nebulizer several times a day. Got my tonsils out. I'd strepp so many times in one year. It was unbelievable. Pneumonia every year. I could never go to the bathroom my whole life, and I still can't. It's still a problem. Um, but definitely worse when I was on diagnosed celiac, and one day I was at summer camp and I ate a breakfast bar, and I literally was in so much pain. I ran to the bathroom and I burped and it was better. So I was like weird fluke. Told my mom about it. She was like, You're eating too fast. Like, I don't even know. It was just like whatever. Um, that summer, my dad was out of the job. It was, you know, a few a year or two after the recession, but like job market was not good. So we had to take a family road trip to South Carolina because that's where all the work was. My dad was gonna get a job down there. So we were literally living on the road, going from cracker barrels to Perkins, and I was throwing up in parking lots, literally like breathing out of a brown bag. Like, I still remember being in the South Carolina cracker barrel parking lot, like absolutely hyperventilating.

SPEAKER_01 5:45

It's traumatizing.

SPEAKER_00 5:46

Couldn't eat anything, and of course, they're like, oh, we have to give her something light to make her feel better, bread, cookie, things like that. Um, so at first, there wasn't a lot of research around celiac disease then, and it wasn't common. So I got allergy tested and I was allergic to a ton of things because again, my immune system was attacking itself. So the results weren't really actually like that accurate. Um, but wheat was the one thing that we did realize was making me sick every time. So we kind of just went with like, okay, it's definitely the wheat allergy because that was one of the allergies that showed up. Then I started eating soups, barley, malt, and then I realized, ah, maybe it's gluten tested, celiac. Mom and brother also celiac.

SPEAKER_01 6:24

So wow. And you know, I feel like also in 2010, it's a very different food landscape and compared to now. Oh. So just what was it like navigating your childhood, like and then teens, and now like adulthood, like comparing like now versus you know, 17 years ago?

SPEAKER_00 6:42

I mean, back then I'm very lucky that my mom was my advocate and the one who had to read labels and do things like that. Um, but it was a childhood of not understanding why, you know, birthday birthday donuts in class, everyone got their number nine, number 10, Dunkin' Donut. I was eating nothing. Um, my mom eventually got scrappy and thought of bringing Italian ice to school, so we did that for my birthday. Um, but nobody really knew what it was. You would look at waiters, sometimes head chefs of restaurants, and of course they weren't like nicest, could be like the Applebee's in my town. They would come out and be like, Celia? My mom was like, Oh no, oh no. I had a and I did not like I did not like salads, so there was no salad for no with no croutons for me. It was, I was a nasty girl. It was hot dog, no bun. Like, oh my god, everywhere I went and can't eat hot dogs to this day because of my Oh my god. Um, but no one knew what it was. It was very and so I just got very used to living this life where all the foods I ate were disgusting and gross, and I had to bring my food with me everywhere. And so seeing now like what we have has been the craziest thing. Because of course, like I'm spoiled now and I get to try everything and go out to all these places, and life was not always like that. Life was a lot of really bad stuff and just no options, and now I get to like run around and try all these things that I never thought would be possible. So, as much as it stinks that it's becoming a fad because then some people are not doing it safely, it also is bringing up more of a conversation and making more people that do care about food safety look into it and do it the proper way. So the fad factor has been harmful, but it's also been helpful in just raising the need for so many people.

SPEAKER_01 8:25

So there's a lot of pros and cons to the whole gluten-free being a fad, like gluten-free, dairy-free. And you know, we've had this since you were a kid. Like, how did it affect your social life growing up? Like, did you feel like left out at certain things, or like how did you navigate that? Like in classroom, birth, like you kind of mentioned birthday parties briefly.

SPEAKER_00 8:43

Always left out, always felt weird about it. Really, like became second nature though. I was so used to it, and it's crazy that this is like kind of part of my personal. It's not part of my personality, but unfortunately it's what people associate me with. But I never talked about it. High school, like college, it wasn't something that people talked about a lot. It never came up. I sometimes even forgot myself because I was so used to just going about my routine.

SPEAKER_02 9:08

Right.

SPEAKER_00 9:08

Um, but unfortunately in high school and college, I started eating it in social situations where I felt like I felt left out. Like finished a 5K. There was a soft pretzel truck. All my friends got soft pretzels. I ate a soft pretzel. I was like, wait, nothing happened to me. I'm gonna keep going. So I kept eating gluten. And at the time I was like, I'm so fine. I was so fatigued. You look at photos of me, my face was so puffy. Again, not the smart thing to do, but it was just my teenage brain feeling left out and not knowing how else to be with and keep up with everyone, I guess.

SPEAKER_01 9:41

So you were eating gluten then, like when you were not technically supposed to. Wow. And when did you fully like realize, okay, I have to stop doing this? Like, this is affecting my health. Like, when was that turning point for you? And how did that feel, having to actually cut it out completely?

SPEAKER_00 9:55

Gr like college at one point, it just was literally reaching a point of maturity and being like, you feel like crap. Why is it worth it in the moment? It's not. So it literally is maturing, and I think that's another thing too. A lot of people out there are like fighting to be the most gluten-free and like safe about it and stuff, but you forget that it's still a self-control thing and it sucks. It sucks when you're drunk at 2 a.m. and your friend is eating a slice of Bleaker Street pizza and you can't have it. Like that's rough.

SPEAKER_01 10:24

Yeah, it's rough. So, but now I mean there's so many gluten-free pizza options out there in the city that you can probably get like a oh yeah, 2M drunk gluten-free pizza towards it.

SPEAKER_00 10:33

That's a problem. You gotta get a personal pie.

SPEAKER_01 10:34

I'm not waiting for that. No, that's true. That's true. Well, thank you for sharing that. Um, so for you know, every time someone with celiac goes out to eat, there is like a risk, right? Even if you like talk to the waiter, the chef, the manager, and interrogate them, it's still things can happen. Oh, yeah. For listeners who don't live with celiac disease, um, would you want them to understand about what that like risk feels like um and what it feels like sometimes when they do mess up and like what that experience is like if you're comfortable?

SPEAKER_00 11:06

Yeah. Um, I mean, what it feels like is just really freaking scary. Um, a lot of the times you have the intuition when you're about to eat something and they convince you it's fine, and then you don't know until you react. Um, but then sometimes also like you find out right after you eat something, and it's so scary because you don't know what's gonna happen to you. Everyone has like their own gluten reaction, and like I have one that's pretty, pretty typical, but you literally don't know how bad it's going to be, how it's going to happen. Like sometimes I'll eat more than like sometimes a cross-contamination will completely wipe me out more than like full-on eating it does, like for more days, and sometimes vice versa. Like, it's just the scary of like what's going to happen to me and how much time do I have. I mean, it's because it's like you can't really do much either, and like obviously there's an urge to like try to get it out of your system as quickly as possible and like do all these things. But I remember like this one time it happened to me last year, and I was with someone that I j was meeting for the first time, and I was mortified because I didn't know this person that well, and all of a sudden it's like I'm in this really awkward panic situation, and I'm sitting there and like trying not to cry, but also trying not to literally scream at the weight staff because of how angry their misstep made me. It's just it's a very frustrating moment, I would say.

SPEAKER_01 12:22

And it sounds really frustrating and scary, especially because getting glutened is not always the same every time. It seems like it's always kind of a different reaction that's like the unpredictable, unknown, and you're not gonna know what you're going to expect.

SPEAKER_00 12:32

Yeah, but like I get really bad brain fog and joint pain. So joint pain sucks because I'm very active. Brain fog. Brain fog. I was a civil engineer. When that would happen to me, it was so hard for me to do my job. So hard. I would try my best and I would just sit at work and my brain was a cloud. That's that because it lasts, the symptoms will last for a while.

SPEAKER_01 12:53

Sometimes like two to three weeks. Wow. And so when restaurants have messed up, what do you do? Do you contact them and tell them?

SPEAKER_00 13:02

Do you like I tell them there if my if it happens there? Um, but I'm very and this is also like something that it's kind of like something I've taken on as my job because I'm going out and doing all this exploratory research. So if it's a mom and pop business and like they're willing to learn from me and listen to me and hear like all of the things that could have been done better and like how serious it is, and like if they're very apologetic and like willing to learn, yeah. It's something that I will work with them on, and I'm not gonna like air them out to everybody because sometimes missteps happen and like unfortunately, like new employees can do anything. You know what I mean? So it's like it's really hard, but I try to be understanding. But when a business is not willing to learn and willing to be actually apologetic, which also this one place last year literally didn't even reach out to me. And then after I exposed them on social media, because they were so bad at handling the situation, also, like I gave them a chance to listen and learn. Um, they addressed me by the wrong name. I was like, Oh, so then it was like, all right, this is where my anger now, like female rage is going to the max. I am now making an entire video about this. And I did.

SPEAKER_01 14:14

And how did that how do people receive that?

SPEAKER_00 14:17

Like how Oh, everyone was pissed. And it's crazy too, because like people all the time, like are always up in like I had this one situation in December where I blew up this one restaurant and they got so much gluten-free business that they just didn't want to do it anymore because making something celiac safe is a lot of work. Right. Um, and so they started turning people away even for cocktails. They were like, it's not gluten-free, we can't serve you. So then I was getting angry DMs from people being like, I was on a date, you ruined this, a Reddit thread was made about me, like all this stuff. And it's like so frustrating because the other thing that people need to understand about restaurants, and that's why you have to be your own advocate, is that every single day things change. And people are human, nobody is perfect. Staff can change, policies can change everything. Like, it is not on me. I do my best when I give recommendations, it is not on me to advocate for you, and it is not on me to literally be the one serving you your food. Right. But yeah, it's like every time you go out, it's a risk. It's scary. And it's also sometimes scary for me to like get those messages and being like, shoot, what's going on back there that's changed since I posted this video? Like, some people find my videos a year later. It's like, I don't know what to do.

SPEAKER_01 15:30

Ah, and like when you go to a deep when you go to so many different restaurants like every week, like, do you have to like mentally prepare yourself when you go to these restaurants knowing that it's a risk? Like, how do you kind of approach that? Or do you feel like you just go into it just trusting?

SPEAKER_00 15:42

Or like I'm unfortunately so used to it now that I don't get scared anymore. But I used to, yeah, it used to be like a whole planning process, but I still like I will do all my research online, Reddit, find me gluten-free, belly, fig, everything. Like I literally go on every single app, and then after that, I sit and I determine how I'm gonna contact them, whether I go by before, or if they invite me in, I email them. And then what else do I do? Sometimes I'll just pull up. Yeah. And ask some questions. Yeah, I went to this one place, Simo Pizza, and I would I was like, hey, like I have celiac, and they were like, I was like, Do you cook on their own pan? They basically like laughed at me. I was like, okay, I'm never going here again.

SPEAKER_01 16:23

Yeah.

SPEAKER_00 16:24

So many followers recommended it, but like that doesn't mean they're all celiac. Gotta do the research myself.

SPEAKER_01 16:28

Right, because sometimes it might be gluten-free, but it's not actually celiac. Safe, because again, it's kind of a fad. So well, I'd love to kind of transition, not like love, this is obviously a kind of a heavy topic, but I would like to transition more to just the mental health side of living with celiac disease, especially because you've been so open about your eating disorder, which I really applaud you to do. That's really brave and noble of you. And I, you know, I feel like it's a topic that is not really researched enough in the allergy and dietary restriction space. And but we do see that there is a lot of people that have allergies and celiac that do experience um disordered eating. I'd love for you to kind of share about that experience and kind of like, do you think celiac, like having celiac kind of caused you to have this eating disorder, or kind of what was that like growing up?

SPEAKER_00 17:12

I think it perpetuated it. So I actually wrote this down because I was thinking about it a lot. I think my situation was a perfect storm.

SPEAKER_01 17:21

Okay.

SPEAKER_00 17:22

So, number one, um, I unfortunately grew up in a finished the plate club household. You couldn't get up from the table until you finished your plate. My family also had massive portions. So when you have the innateness of not understanding your hunger cues and just understanding that you finish everything in front of you, really bad. Really bad way to grow up. And I don't blame my parents for this. It's the way they were raised too, but unfortunately, when that's innate at such a young age, it's really bad for you. Combination number two even though that situation was at play, I still had an almond mom. So very controlled about what I ate. I did not eat fruit roll-ups. I had the dehydrated fruit strips from Wegmans and Whole Foods. So I was very conscious of the things I was putting into my body, but then not how I was putting them into my body. So I was thinking about food at the wrong time. So I was thinking about it when I wasn't eating it, and then when I was eating it, I wasn't thinking at all.

unknown 18:17

Oh, yeah.

SPEAKER_00 18:18

Bad. Number three, family obesity. So I had a fear of being overweight. Now, number four, this is where the celiac comes in. So when I was growing up and I was undiagnosed, I couldn't gain weight because when you have celiac disease, a normal intestine looks kind of like a shaggy carpet. You know, you have all of these fibers that can absorb nutrients, and that's how you, you know, get them in your body when you have celiac, and that layer of your intestines is ruined. It's a slide. So mine was a complete slide. No nutrients were coming in at all. I was eating all of this food, as I mentioned. I was eating a lot because I have, you know, two brothers over six foot now. My dad's over six foot. Like, we ate big portions. When I finished the plate, like I ate a lot, couldn't gain a pound. It was like my legs would snap. It literally, like, the doctors were like, What's going on? And it was like, at that time, no eating disorder, nothing. It literally was like, I don't know, she's just not gaining weight. So I was so used to eating all these big volumes of food and not seeing anything from it. I would just be this tiny, tiny girl. So never thought about anything related to that. Then when I got diagnosed, I started to gain weight, but normally, very normal. I was very active. I was growing a lot. I ended up growing five inches in one year, like getting better and all that. So everything was fine. Um, and then came COVID.

SPEAKER_01 19:40

Everything goes wrong during COVID. Like every just COVID was just, I don't miss that era. I think nobody, I think anyone listening to this is COVID.

SPEAKER_00 19:48

So I was, this was when I was still eating gluten when I shouldn't be here. Oh wow, okay. I was quarantining with my roommates at school, and we drank every single day, took gummies every single day, ate a lot of food every single day, and for the first time in my life, I looked in the mirror and I hated what I saw. And that brought me to all of those Chloe Tang workouts and tracking how many steps I did a day and going on keto diet. Wow. Which is a crazy thing to do if you knew what I looked like then. It was like, it's so sad, honestly, the beginning of the sickness of the brain. Um, and from there, it just became the constant cycle of figuring out ways to control what I eat. And that's number five, which is my brain. I have ADHD and I'm a control freak. As we know, I do a lot of things. So when I lose a sense of control, that's where everything kind of goes haywire. And so the ADHD goes along with the binging because you can't control or stop it, but then the need for control afterwards is where the punishment happens. So when my eating disorder started, it was more of an orthorexia situation, I would say. So I was in college.

SPEAKER_01 21:00

I would Do you mind defining what orthorexia is for those that maybe are not familiar?

SPEAKER_00 21:04

Yeah, so it's basically just like an overobsession with health. So you're not necessarily like starving yourself or like going on like these crazy, but you're working out too much and you're really focused on all of the nutrients going in your body, like tracking calories. Like, unfortunately, a lot of like people that are really heavy in the fitness space have orthorexia. It's like not normal. Um, but yeah, so it was more of a situation like that where I started like working out more than I used to, and like I would control my eating sometimes, but I was very calorie-focused. I knew how many calories everything had. Um, and then once I graduated college was when it got really bad, and I started working and commuting to the city a few days a week. And I would eat maybe a yogurt for breakfast, um a tiny frozen meal for lunch. And then by the time dinner came around and I was commuting home. I literally could not even stand up. I was about to pass out. And what would my body do? Because it was starving. I would eat so much for dinner. So much. So all this restricting all day led to me binging at night and then I would feel guilty about it. So I would go on an insanely long hours-long walk till it was pitch black outside. And so that's where the real disorder kind of started. Wow.

SPEAKER_01 22:25

And you know, in what ways do you feel like did like having celiac disease has played like a role in that? Like because you already have to restrict like one category of food that's made it like it's kind of exacerbated it, or do you feel like?

SPEAKER_00 22:39

Um I think I guess to continue the story. So after I moved to the city, I kind of fell off the eating disorder train a little bit, but not really. Like I was still not eating huge meals during the day and binging a lot at night, but I started getting into running and going to the gym a lot. So toxically, that felt like a justification for these binges. Like I'm burning it off, so it's fine. Um, but the binge and purge cycle became more and more difficult, and it got to a point where one day I literally looked in, I was in Utah for a month for work. And I was getting like a stipend to get takeout every night, and so I found like my three places that were really good. And this one was a Thai place, and the amount of food that came to me was so massive. Like I still think about it, it was so heavy, and I literally had enough for lunch the next day, which I was going to do pack it in a thermos, bring it to lunch, and I ate the whole freaking thing. Wow. Um, and it got to the point that at this point I was probably throwing up for about a year, um, forcing myself to. Um, it got to the point that I stuffed my face so badly that I was actually just throwing up on my own because that's how overfull I was. And I looked at myself in the mirror and I literally was started crying and I was like, this needs to stop now. Um, so I decided to get in control of the binging, but then was the anorexia. So for me, after that, I lost 20 pounds in two months. Wow. Wow. And being gluten-free really started to take good effect now because I was not eating so many foods. Because the problem with being gluten-free is that if you're ordering pizza or pasta in most situations, you can't just get a slice of pizza, you have to get the personal pie. I sat there knowing that if I got the personal pie, my stupid brain was not going to be able to not finish the pie. So no pizza is allowed. Um, so that's honestly why too, like my pizza, like the whole series that I have is like so special to me because that was a food that I didn't let myself eat for two years.

SPEAKER_01 24:49

Um I'm really proud of you. Yeah. I'm really proud of you.

SPEAKER_00 24:53

You're really um and then same thing with pasta. Like some places now are starting to make their own gluten-free pasta, but like when there's a gluten-free pasta substitution and it is penne, I it is most of the time a restaurant taking an entire box and putting it on your plate. Same thing. I knew if that plate of pasta was in front of me, no shot was I gonna be able to stop myself from finishing it. So that was when I started really, really, really controlling my eating. And the same thing, like even holidays and like not in my own house because I had other gluten-free people, but when people make gluten-free things, they like are always shoving it in your face and being like, try this. And not only could it be unsafe because you don't know what they were doing in their kitchen, but like I would just feel this pressure to like eat all these things that I didn't want to eat. And so um soon after that, I started my food page to hold myself accountable because um everyone kept coming to me and being like, We need to talk about this, like what's going on with you? And I was like, everything's fine. Um, and as someone who hates to lie, I will tell you that one thing about an eating disorder is it makes you a damn good liar because all you're doing is hiding all of your behavior from everyone else. I mean, I would hide, I would hide these insane, like, oh my god, I used to go to the gym for like four hours. Like, it was so sad. And it just like I would cancel on people after I binged and make up these insane excuses, like just like the most crazy, crazy behavior. And I decided last year that I wanted to get better, and I told everyone I was, but that's when the binging and restricting became so bad. So it was literally just me going lit for like starving for a day, over full for a day, to the point that I was like then forcing myself to over-exercise and like throw it all up and like do all this other stuff. So, like now I'm faced with all this, all these esophagus issues, and it's my freaking fault. It's my fault because I thought I thought the health meant what you looked like and not how you felt, and the need to be skinny was more important than my esophagus. So it's very unfortunate. Um, and I think also just the need for like always having to think about food, and that's something that I've taken on now for my food account. But having celiac, you're always thinking about food because it's kind of scarcity. If you're going somewhere, you need to know that there's something you can eat that you actually want to eat. Right. Um, and so the past year, like I decided okay, binge and restriction got so bad. The month of December, I was drinking a lot and binging a lot, and um, I took made this video and I wasn't gonna post it. And the night before my birthday, um, I binged so bad. I went to monkey bar with my friends, had a great meal, was so full. Went home, ate God knows what so much food, and I was so mortified and so mad at myself. And I was like, it's time to just tell everyone because if you don't hold yourself accountable, this is never gonna get better. It was ruining my life at that point, like genuinely ruining my life in December. And I decided I couldn't do it anymore. So January, I decided I'm gonna wake up every day, started eating breakfast every single day, fueling my body, all these things, and my body's not liking that because it's very confused, but just gotta keep going. It'll adjust, yeah.

SPEAKER_01 28:14

I'm really proud of you because that's really, really hard. Yeah, she with the content you post me. Your your your whole thing is food, that's your whole brand. Yeah, and you're just always exposed to food. So, like, how have you been able to kind of quiet that part of your brain if you're even able to when you go to these different restaurants posting these different content, like like still a struggle for sure.

SPEAKER_00 28:37

Um, and I will also say that like silently, um, so many other food creators struggle with this. I would say most of them, honestly. And you can tell when you look at someone if they're like having issues, honestly. Like people could tell with me. And I know a lot of people would just like say make comments on the side because they didn't want to make me talk about it if I didn't want to, but like people know, but like if you think it, it probably is true, and it's very sad and it's very unfortunate. Um but yeah, I'm still dealing with it. Wow, um, still dealing with you know binge episodes. I had one today. Um, but it's all about not punishing yourself for it because that's the problem. It's a perpetual cycle, and also right now, like when you put your body into starvation mode for so long, of course you're going to be foraging for food. It's innate, it's natural because I was in a period, I didn't have my I didn't have my period for so long. I was malnourished for so long. My body is still in survival mode. Like I'm still trying to figure out how to like sustain. And until I get to the point where I don't restrict myself when I want something, my brain is not going to shut off and the food noise is not going to shut off. So I've just been trying to be really good about leaning into that and mostly just not punishing myself.

SPEAKER_01 29:50

I think having giving yourself a lot of grace is so important because it's and it this is like recent, like this is you like now, and so again, all I can say is I'm just really proud of you. And that's really it's I mean it's a constant, like every day, all the time. Like that's just something you can't turn off, and you have to learn how to just kind of like navigate that and kind of ignore those thoughts that are like, oh, don't eat, like or binge. It's that's so I just thank you for being so honest and sharing that.

SPEAKER_00 30:16

No, of course, I think it's like something that people need to talk about more, and obviously, and not everyone's comfortable about doing that, so of course it's up to every person, but like I think if you're you know influential to people and people really care about what you think, it also felt wrong. I was getting messages all the time being like, How do you eat out so much and look like that? And like I would just be like, I'm a runner, ha. But like, no, there was something going on, and it just started to feel like such a lie, and I didn't want to mislead people, especially in this era of GLP ones and literally being real thin and malnourished and having the body of a 16-year-old is like romanticized again. And I know I talked about this too in the video I posted, but Half Bake Harvest um posted something on Christmas Day that was more alarming than anything she's ever posted before, and it's gotten to a point with her where it's like you can't even say you feel bad anymore because it's she has a team working for her, and it's grossly irresponsible to be promoting behavior like that on the internet when you have a following of millions of people combined. Like, I just think, and I'm obviously a tiny girl, but if anyone would take anything away from things I post, I didn't want it to be that.

SPEAKER_01 31:31

Right. I mean, I think it's so important to be transparent online to like the degree, like degree that you're comfortable with, um, especially when you're posting about like food and things like that. Like, you don't owe it to your followers, but I think that like you're doing the right things. I do think a lot of people look up to you. I mean, you are like a role model in the gluten-free space. People probably feel really inspired that you're able to eat out with celiac disease and they want to do the same as why like you're like the New York City gluten-free queen after all. Um so I mean it's the truth. Um, so I can imagine that people probably received that post that you did the first one you did, like probably resonated with with them a lot, or probably got a lot of positive feedback. I hope and hopefully that do you feel like posting that kind of has helped you keep yourself accountable more? Like how has that kind of changed the weight?

SPEAKER_00 32:17

It was like the thing for me to be like, you're doing this. Like now everybody's watching you. You said you were gonna gain the weight, all these eyes are on you. But no, I felt I was really nervous to post it because I didn't really know how it was going to be received, and it wasn't necessarily that I would get hate, but more like misunderstanding and like right. Also, just for me, it was facing like, and this is something I face too by having a food account, but like whatever. If you have weird thoughts about it, keep them to yourself. But like anyone I would want to date might find this and know about it, and like they could that could be something to deter them. Like anyone that is friends with me, like that might be freaked out by it. And it was just kind of the vulnerability of knowing now that every time I eat with anyone, like, and I know no one will say it out loud, but I know like most people think about it and just like now we'll have to watch the way I eat or do watch the way I eat and like think about how like what I might be thinking, and that just felt really like scary to me because I felt like that was something that I didn't want to open myself up to, but no, I got so many messages and even comments of embrace, and it just really made me realize that like more people struggle with this than you realize, and like I'm truly not alone. And obviously, like everything everyone has come to me with, I've been like closed book about, but like emphasis on I get it, and I know how scary it is to do it alone because you have some really fking crazy thoughts. I will tell you, the most psychotic I've ever felt is the things I've thought of doing to make eating behavior better. Um, and it just is such a scary thing, and sometimes it feels like there will never be a way out. And you could say, every day I literally say, Okay, starting now, like you're gonna be better. You're gonna be better. This, that. And it's like nothing is that easy, so it's hard to do alone. It's hard. Yeah. So wow.

SPEAKER_01 34:02

Wow. Again, thank you for like thank you, Lex, for sharing that really. For those that are listening, I've also been dealing with some eating stuff. This is my first time like talking about that, not to make this about myself or anything. Um, and Lex is actually one someone that's been super supportive. Um, so like I love you, I love you. Um and you know, I definitely really resonate with what you're saying. I have like obviously like a different experience. Um, but I just think that like I really admire like the reason like you were able to post that video is why I'm like comfortable even like acknowledging that I've had some disordered eating behaviors. I'm like, I for everyone that's like I'm okay, like I'm I'm in therapy, like I have a strong support system, and I'm but I have that that the whole thing about like having to like eat breakfast in the morning is so hard.

SPEAKER_00 34:52

And going on that too, like, do you find that your food allergies are like pinnacle to I'm forced to eat like really clean.

SPEAKER_01 34:58

So that orthorexia thing, like I definitely think I've had it for a very long time. I just never like clocked it, you know what I mean? So, but um that's a different discussion for another time, but I just wanted to just say, like, I love you.

SPEAKER_00 35:11

I love you. I'm proud of you. Admitting it's yourself, it's literally like it's like admitting that your boyfriend sucks and all your friends are right. Like, literally, I was gaslighting the f out of my friends, being like, I don't have an eating disorder. What are you talking about? I'm just really in shape right now. It's like your boyfriend that they're asking you to get rid of, and one day you finally need to realize, okay, Jason, like, is it working? Like, get out of here. Like, okay, fine, I have an eating disorder. I need to face it. Like, that's literally what it is. Admitting it to yourself and that you are finally over it is number one.

SPEAKER_01 35:42

Yeah, because you don't want to lie to yourself. Yeah, like that's one thing too, is that it does make you a good liar.

SPEAKER_00 35:46

Like, it No, I've and I've like that's the thing too. I hate lying, and it caused me so much anxiety because the lies I were saying were so insane and so harmless. Like, so harmless. They only harmed me. Yeah, but it was just like, why? Where did I think of that? I've never I I can't lie to people, and all of a sudden I was like telling these weird lies, and I was like, oh my god.

SPEAKER_01 36:07

It's a mental health condition, but like and it and there's so many layers to it.

SPEAKER_00 36:10

No, like you're literally like a hacker, but of your own like body, and it's like not good.

SPEAKER_01 36:15

Yeah. Do you feel like um, you know, you being in the food space, like and being among other food creators, like that must be hard, like having to be at these different food functions and events and things like that. Um I feel like I had to ask you that, but I guess like how do you navigate being in an online space that is just so centered around food?

SPEAKER_00 36:38

Like in terms of celiac or eating disorder? I think both. Um, eating disorder, it's as I said, like a bunch of people struggle with it. I just I know it and I just stay silent and I hope they know that they can reach out to me if they ever need to. Because you when you have it too, like same thing, the behavior, you can clock it with anyone else. You can literally clock it by being with them for 10 minutes. You got something like I know someone's up, like I like to know something's going on, but um, but honestly, as the gluten-free thing, it's been like hard just because big events, like I was invited to McCormick's like new flavor event last week, and then we like confirmed with my management that I was going, and then they were like, Well, just so you know, there's not really a lot of gluten-free stuff, but like if you want to come, same thing, what's that big hot dog brand, whatever their name is, invited me to the Yankees game on Friday. They're like, by the way, no gluten-free buns, but if you still want to come and enjoy the dog, coincidentally, yeah, we know why I don't want to do that. But I know like you really can't get a bun from the stand that has it, like you refuse to incorporate that in the event. Like, I'm not gonna go and bring my own, but your own bun does come to events, it's been hard, but like also in the same way, like I just get left out of a lot, and it's like really frustrating. And I feel like I'm always trying to prove myself, and it's okay, but I feel like I definitely have to work a lot harder and still just like so many things. Like, people don't consider me because I'm too niche or too this or too that. And I'm like, no, you don't understand my audience, is more converting because like I post, you can get a gluten-free mozzarella stick. These people haven't had mozzarella sticks in seven years. They're going tomorrow.

SPEAKER_01 38:14

You have a cult following, like you're creating it. They're loyal.

SPEAKER_00 38:17

I love them. I love all my babies. No, I love all, I love everyone. Like, but the community is just so powerful, and like people don't understand. Like, if you're a regular person, like my roommate, and she sees this cool reel of a restaurant, she'll save it, send it in the group chat. We'll go in the next three months. If a gluten-free person sees mozzarella sticks, they're going like tomorrow. This app. Yeah.

SPEAKER_01 38:38

Because it's like, how can you find a gluten-free mozzarella stick? Like, that's not like a thing unless exactly. It's like food scarcity. So exactly. And I mean, I'd love to kind of actually transition more to your online presence. They have some questions about that. So again, thank you, Lex, for sharing, you know, um your your eating disorder experience and and being so open about it. And I think a lot of people are gonna be really like resonating with that, including myself. Um, and it gives us a lot of hope that this is becoming a more normalized conversation because it is a very common thing, especially with women. It's very common and no one wants to talk about it. So you're doing a brave thing of doing that and you're making change. So just thank you for that. Um, so you now have like freaking like 79,000 followers on Instagram or what, 80,000? I don't even know.

SPEAKER_00 39:20

No, it's so crazy. I don't know. I think it is 79, 22.

SPEAKER_01 39:24

You're killing it. Um, what has this community community that you've built? Like, what has it meant to you having these people follow you? Like, what has like how has that changed your perception of yourself, your celiac disease, just kind of like your life having this online presence?

SPEAKER_00 39:39

It changed my life completely. I mean, it got me into a completely new job. I was a civil engineer and now I work at an influencer marketing agency. A year and a half ago, I didn't know what front of house meant. Now I'm convinced. Well, I anyone could say this, but like I can help like marketing, run a restaurant, like I know everything, and I feel like I have the mind for it. Um, so it's given me more opportunities than I ever can imagine and really brought me out of my comfort zone in a good way. I wasn't shy in high school or college, but growing up I was very shy and I never see that. You're so you're so out yourself. I know. So that's shocking. I used to literally like sit in class and like freak out and go to the bathroom every time we popcorn read because and I would read every paragraph ahead because I was scared I would get picked and I would have to like do it in my head first. Um so it's been really cool to know that so many people like appreciate the information and like honestly, every time I'm walking down the sidewalk and I have a bad day, and someone like literally just like, hey, like I love your page, like oh like that's so cool. That makes a big difference. Um, so it feels really great, but the events are really where like all the fun happens. It's just like so nice to gather everyone in a room and like know that everything's fine, and like I don't know, for me, I'm so used to talking about it, but like all these people can never talk about their stomach problems or their this, that, whatever. So it's like it's been so nice. Like, I started doing events a year and a half ago, and now people like show up together that met at some of the early ones. Like, it's so cute just knowing like how strong this community could be. So I definitely just want to keep focusing on building that and building my platform and doing the best that I can. Again, I'm not perfect, so everyone needs to stop acting like I should be, but I try my best.

SPEAKER_01 41:20

You're doing amazing. Um, what has been your favorite event you've hosted? Because you've done quite a few, and they look like we were doing one next week, but I know.

SPEAKER_00 41:29

Oh, well, I got so drunk at my holiday party, so not gonna lie. And that was like the most stressful event I ever did. I lost almost $3,000 on it, like of my personal money, but it was so much fun, and I do it again. Um, and then I don't know, I think it's that. That was just oh, Galantine's Day at Lily and Lou. That's the winner. That's the winner. I did it with Bee Free. Um, they're awesome, their products are awesome. If you have not had their wraps or their peanuts or anything, try them. Um, but we did it at Lily and Lou, one of my favorite restaurants, and love the staff there, love the space. We had a spiritual bread reader who also gave me a fortune that is like half coming true. I'm like, what the fuck? Okay, she told me about my health crisis. She knew.

SPEAKER_01 42:13

Oh, she knew. If she could just sense it, wow.

SPEAKER_00 42:16

Um, and it was just so much fun. That was my favorite.

SPEAKER_01 42:18

Wow, that's a good for you. You're killing it. I guess I'd like to ask more about the mental health side of living with living with celiac because I had other quite a few other questions I wanted to ask. You know, obviously you're you now handle celiac a lot different now, and you're probably more confident in it and you own it. I mean, you have a whole brand around it now. If you could go back and like talk to 10-year-old Lex and once you got her diagnosis, what would you say to her?

SPEAKER_00 42:45

Oh my god, I don't even oh like so cliche, but it gets better. Like, look at look at this. Um, but truly at that point, I just like couldn't understand why and like didn't ever think it was going to get better. So I think like just knowing that the world is changing would have been like a big piece of hope. Because I genuinely thought like some of these things I was never gonna have again. I remember the first time my mom brought Against the Grain pizza home, and it was the first pizza that I ever had that didn't taste like crackers. It wow there's even a little dare cheese in the crust. I think that's why I loved it so much. I grew up on that. I grew up on Against the Grain pizza. So good. That was the first time I think I ever tried something gluten-free that I liked. That was the first time, and I remember how insane it felt. Like I literally was like, oh my god, food could be good again. Slowly and slowly, like Wegmans started coming out with more and more. That was my that is still my grocery store, but like that was the grocery store that started. They were the first gluten free aisle that I've ever seen. Oh, yeah. Watching the evolution of just how that space has come about is crazy, but like, shout out Wegmans. They were the first ones, like their shrimp tempura, everything. I grew up I grew up on that. Like the first grocery. Store that really like embraced like I had no idea free aisle, like everything. And I didn't have a sprouts near me, so they might have been like pretty up on it too. But no, it was amazing. So I guess I would just tell her, like, it gets better, babes.

SPEAKER_01 44:13

I love that. It's cliche, but it's true. Yeah. I think that's beautiful. Um, and then just generally speaking, you know, for people that are listening that maybe you know are in the restaurant industry, like their chefs or waiters or hospitality workers, like what do you want them to understand about celiac they probably are getting wrong that you've experienced or if you're using a shared fryer, don't use the gluten-free label.

SPEAKER_00 44:39

Why are you doing that? It's not gluten-free. So stop. Um, I think that would be a great thing. Cross-contamination in one thing, in one way, that's like a minor chance in processes, like, because every restaurant, honestly, and this is where some people are like, they say if you're celiac, blah blah blah. A lot of people it disclose it because they care, and they're like, There's always a 1% chance. You never know. I know people that have gotten gluten at 100% gluten-free restaurants and like swear on it by like they swear by it. Like, and it's like, I believe them because you read reviews online and it's happened to other people. So, like, there's always a chance. Like a distributor could have an onion that for some reason, like you just never know. But I think they just need to understand like what gluten-free actually means in terms of labeling. If it isn't a shared fryer, it's not gluten-free. It's not. So knock it off. Cut the bullshit.

SPEAKER_01 45:33

Usually I don't care in the podcast, but this is gonna be an explicit episode, so we could just wear all we want. Um, so my final question that I ask all my guests, and I'm gonna kind of make this more centered around celiac as well as allergies, is if you could design the ideal emotional and medical support system for people that have food allergies, T-Ac disease, or other sort of dietary restrictions, what would that look like to you?

SPEAKER_00 45:57

Oh like honestly, I wish you could just like give a one-sheeter to someone, and the front is everything that would make you feel better, and the back is everything that other people that are around you need to know. Because I honestly think like the number one thing that would make people with food restrictions and allergies lives better is not anything they can do, it's the way that the world around them works. So I think like just more understanding surrounding people would be great. Like, I see some of the comments on your videos sometimes heinous. I'm like So foul. Literally, what is wrong with people? Um, I think there's just such a lack of understanding about like celiac and food allergies. Like, this isn't some fad. Just because no one had it 40 years ago does not mean that it's not real. I promise you it's real. And if you don't believe it, come with me next time I eat gluten and see.

SPEAKER_01 46:52

Yeah, no, exactly. Hopefully you don't do that eat gluten. We don't want that to happen. But obviously, like people, I mean, celiac has always existed, just now there's a diagnosis for it. Same with food allergies.

SPEAKER_00 47:01

Like it's just like why do you think everyone just died all the time? Like just cause like no, it's because there's actual like reasons to find it.

SPEAKER_01 47:09

Lex. Thank you for being on my podcast. This was such a like really great um and just raw and honest conversation. Um, so thank you so much for being so open. For those that want to follow you and support what you do, can you share what your Instagram or TikTok handles? I'll make sure to link it in the description below.

SPEAKER_00 47:27

Yeah, and my CBO gluten-free on all platforms. I'm in my flop era on TikTok. Thanks, Oracle. I know. Same. It's or it's Oracle. I'm telling you. It is. I have a video that has one million likes on Instagram. And the steak one. Yeah. That one's so good. And TikTok, it just started blowing up like two days ago, and it's nowhere near that. But like the algorithm took that long. I'm like, something is wrong. Oracle.

SPEAKER_01 47:51

It's freaking Oracle. These freaking billionaires, man. Well, anyway, for those who are listening, thank you for listening to today's episode. Hope you all have a great day, night, afternoon, wherever you're from, and I'll see you next time. Bye.