Becca Lustgarten is a vocalist, writer, and classically-trained actress. A few years ago, after suffering severe digestive distress, she was diagnosed with Celiac disease. Celiac is more than an allergy – it is a degenerative disease that causes major digestive destruction if left untreated. The only treatment? To go gluten-free. Becca joins us to share her story of discovery, and how she’s worked to heal her gut since her diagnosis.
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Listen in as Becca shares…
- that she was always a sickly child, and had physical manifestations of her emotional reactions to stimulus
- that she discovered symptoms when she was working at a bakery in NYC, of all places
- that while beer contains gluten, spirits don’t – even vodka and gin
- that every Celiac patient has a radically different experience of symptoms – and often, as in Becca’s case, it would feel like a hangover
- that Celiac patients are notoriously at risk for malabsorption because of the states of their stomachs
- the availability of gluten-free foods
- how getting Celiac changed her relationship to food and eating – and even drinking (bye, beer!)
- restaurant etiquette when you have Celiac
- feeling good and looking good – and the relationship between disordered eating and having to change one’s diet for health-related reasons
- men, women, and our relationships to food, eating, and shame
- boundaries – and what to do when you’re sick at work
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Lauren: Thank you so much for joining us. I’m here today with my friend Becca Lustgarten, who’s a performer based in Los Angeles and is posing for me right now, which you can’t see! And she’s on the show today to talk to us because she’s got one of the more commonly diagnosed illnesses that we haven’t talked about on the show yet, which is celiac disease. So Becca, thanks for joining us.
Becca: Well, thanks for having me.
Lauren: Oh my gosh, total pleasure. we’ve tried to make this happen for a while now, so glad that we were able to. Let’s just jump right into it … can you tell us when and how you first realized that you had something going on with your digestive system?
I think I was always a relatively sickly child. Really stomach sensitive; always very sensitive, in connection to what else was going on in my life.
And even as a small kid, I was aware of the fact that if I was having a bad day, or if I was having a fight with a friend or having trouble on a test or something like that, my stomach would be really overly active and not so happy with me. So there’s a part of me that kind of expected something like this to be true later on in my life. But anyhow, I essentially found out my first year living in New York City. So this was either late 2009 or early 2010, I can’t exactly remember, but somewhere in that realm. I had had no real awareness of any dietary issues up until that point. There were periods when we thought, oh, maybe I’m lactose intolerant or something like that. But that was quickly brushed aside. I did live in Italy for six months; I studied abroad there and ate all of the pasta and pizza and all of it. My senior year of college, when I came back from being in Italy, I recall feeling like something was weird. But again, never weird enough that I took it seriously and went to a doctor.
Lauren: But it was weird in Italy?
Becca: No, it was weird when I came back. And that’s fairly common.
People with celiac often talk about how there’s a trigger moment, or some sort of inciting incident/experience in their lives that kind of unlocks the thing.
So it’s possible that I was totally fine until I went to Italy, or until I had something really high in gluten when I came back and my system was like, ‘Whoa, we’re awake now, you’re allergic!’ So I was working at a bakery in New York City called Alice’s Teacup.
Lauren: Oh, I love that place!
Becca: Everybody has that reaction! That place is so famous now! Yes, I was working at their original location on the Upper West Side.
Lauren: And the irony that you were working in a bakery!
Becca: Well, that’s the whole thing … this is a huge part of why I found out. So, first year, year-and-a-half in New York, I was over the honeymoon stage; I was fairly depressed. I was eating a lot, and I was eating a lot of the baked goods that they would give us at the end of the day. So their whole thing was, at the end of service when the place closed, if they had a whole bunch extra, they would just let the staff take these things home. Because they actually weren’t allowed to donate them, which I thought was really upsetting.
Lauren: But there are certain rules about that, about cleanliness and hygiene, I know.
Becca: Yes, the health department won’t let you.
Lauren: But that doesn’t stop you from donating them.
Becca: Sure. That’s true. And we could have done that, actually. I don’t know why we never did that.
Lauren: Because you wanted to eat them!
Becca: That’s right! I would go home and in the middle of the day, I’d be eating cake and cookies and whatever. I would take a box of scones and cake and blondie brownies and whatever the hell else that they had to just give to us at the end of the day. I would take it home and I would ride the crosstown bus and then get on the subway. And during that trip, I’d probably eat two or three of the things in the box. It was a regular thing. I was eating a lot of it. I would bring some home to my roommate; she and I were living in Harlem at the time, 143rd and Broadway, and it was so hot. I remember it being dead of summer. It was so disgustingly hot and we didn’t have central air. So we would eat these crappy snacks instead of dinner, and then go sit out on the balcony and drink a bunch of beer —because it was so hot. And I was waking up every day feeling like absolute garbage, just complete and utter garbage.
Lauren: And for those who are listening who don’t necessarily know, there’s a lot of gluten in beer. It’s a wheat product.
Becca: Yes, and if I may, on a slight tangent … people always talk to me about, “What kind of gluten-free vodka do you have? Or gluten-free gin?”
Spirits do not have gluten; they are distilled within an inch of their lives. Beer is not distilled the same way; beer is highly glutenous and really, really bad for me.
Anyway, we could talk about that forever! I work in a bar so I am always, like, you guys are so dumb!
Lauren: You know, but I remember going through a thing where I was, like, Okay, I have to have potato vodka and not regular vodka.
Becca: Perhaps some of that could have to do with preservatives and other things that are being put in it, God knows … I don’t know enough to speak to that.
Lauren: Also, they’re fermented so much, as you say …
Becca: Yes, within an inch of their lives. Anyhow, all that’s to say … I was drinking all this beer, I was eating all this crap that my body just absolutely couldn’t deal with. And I was waking up feeling really, really terrible.
Now the thing about celiac is that everybody who has it has a radically different experience with it, in terms of symptoms. And the symptoms are kind of anything and everything.
You ask one person what their experience is when they have a flare-up, it’s going to entail five things that I, as a person with celiac, don’t ever experience when I have a flare-up. So it’s really, really hard to pinpoint.
Lauren: So it’s not just that you get the sh*ts; it’s much more complicated than that!
Becca: No, it’s much more complicated than that.
Lauren: Although that can be part of it?
Becca: Well, it usually is, but that’s not just the thing.
Oftentimes, it manifests as kind of a hangover feeling … really, really heavy head; super tired, really sluggish, sometimes kind of achy or feverish. Definitely stomach upset, sometimes just cramping, sometimes no diarrhea, but like extreme discomfort. All sorts of things.
And so it kind of feels the way it does when you’ve had too much booze the night before! It honestly does. And so I just thought, ‘Oh God, I really have to cut down on my drinking.’ That was my solution. But still eat all the scones and the cookies and the cake!
Lauren: And cutting down on your drinking doesn’t mean cutting it out either.
Becca: No, it really doesn’t. And at that time, it was nowhere near my consciousness that this was a thing that I was going through. So one of the guys that I worked with at Alice’s … my manager at the time, who I also knew from back in the day, so we were really friendly … he was talking to me about how he had recently gone to see an allergist because he was experiencing a lot of symptoms that he couldn’t pinpoint. He knew that there was something happening with his diet, some sort of allergy, but he wasn’t exactly sure what it was. So he went to an allergist in New York.
Lauren: Which is smart; that’s the thing to do.
Becca: Yeah. He was the first person that I actually knew directly who had gone and taken that step. I didn’t actually know anybody else who’d gone to an allergist. So that was new for me. This is also 2009, 2010. Now, I feel like people talk about this stuff far more frequently. Back then, it wasn’t really a thing that you stood around chatting about with your friends. So again, you know, he was my boss, too. So there’s that. But he started telling me about the testing that he had done. They did blood work, and they also did … I don’t know the actual, specific name for this … I call it prick testing, which is where they have these contraptions that are almost like 2×4 pieces of wood, and then they have all these needles … very, very thin, tiny needles on the wood. And each of them has a different allergen on them.
Lauren: How do they put them on so specifically onto tiny little needles, though? It’s such a system!
Becca: Science? I don’t know, I really don’t know. I have no idea. Basically what they do … I know this is a podcast, so no one can see what I’m doing …
Lauren: She’s holding out her arm.
Becca: If you were to take a 2×4 with nails on it and press it onto your forearm …
Lauren: Which doesn’t sound fun to begin with.
Becca: It actually doesn’t hurt. You would think that it would, but it doesn’t. It’s like acupuncture-style needles, super, super thin. I mean, you feel it a little, but it doesn’t hurt. And so basically they prick you.
Lauren: And it’s on the inside of your forearm. A bit like the old TB tests … sometimes they would raise and sometimes they wouldn’t … a similar kind of thing?
Becca: Very much. Essentially what they do is they watch you; you have to stay in the office and they watch to see what happens to your skin. And when you’re allergic to something, your skin will tell you. It gets all red, it gets raised — it’s very, very clear. So that’s part of the testing, and then they do the blood testing. There are multiple factors … and I’m not a doctor, so I don’t remember exactly how all of this stuff goes.
I was also totally in denial when it happened; I was so upset when it was happening.
So I kind of only really remember part of what she said to me, which is that I don’t have the worst case of celiac, but I do have it. There are different kinds; there are different levels, I guess. I have it, but it’s not like I’ll be on my ass if have anything that’s even come in contact with something bread- or flour-related.
So, my first question to the doctor was: “Does this mean I can’t have beer?”
I was so upset about that. And she said, “Yeah, and that’s just the beginning. Obviously, you’re going to have to totally rearrange the way you’re eating.” She also told me that I had to go on an elimination diet. Which is now far more common, people know what this is — but at the time, I thought, “What the hell are you talking about, lady? What do you mean? What am I supposed to eat?”
Lauren: Also, I think when you’re struggling to survive in New York City, and busting your ass to try and make your career happen, the last thing you have time for is planning your meals. Especially in the city, where you can get food anywhere you are, so you can get it on the run. We were talking about this even when I came in today to interview you; how we’re on the run and we have to grab things and whatever. But it does really put a wrench in plans, doesn’t it?
Becca: Yes. And I was a child. And I was depressed. I was very much in a dark place with my relationship to New York anyway. Even though I had yet to fully acknowledge it.
Lauren: And also in your relationship to yourself, right?
Becca: Exactly right. So, it was a complicated moment. But I essentially did what she asked — and within a few weeks, I felt very, very different. I remember walking down the street in Manhattan and calling my dad and saying, “I think I’ve been sick this whole time. And I had no idea. I just didn’t realize. And now that I’m not sick, and I have energy, and I have some drive to do things, I want to make a nice meal for myself. I want to go exercise. I feel much more vibrant now than I did.”
It’s like someone sort of rubbed the film away from my face, and suddenly I was seeing everything fully and feeling everything fully.
So, from that point on, it was, like, ‘All right, cool. This is what’s happening. This is my deal. I’m just going to figure out a way to get through it.’
Lauren: And if you’re feeling good, you kind of don’t mess with that. It’s not worth it.
Becca: And people were always, like, “Oh, come on, you could just have a little piece of … ” Well, no, that’s not the way it works for celiac. It’s really not.
Lauren: So tell us about that.
Becca: The thing about this disease is that it actually destroys the lining of my stomach. If I were to have a piece of bread or a piece of pizza, or anything like that, it goes inside of me and it kills my insides. And it’s painful, and it doesn’t heal very easily. And so what happens is then it’s damaged, and it makes everything else harder.
So people with celiac are notoriously at risk for malabsorption. Because their systems are compromised, and they can’t absorb as much as they need to from their food.
So it’s just a whole can of worms. There’s no pill for it. I can’t say, I’m just going to take my Lactaid before I have my ice cream. There’s no such thing as that.
Lauren: You just have to stop with the gluten.
Becca: And it can be really, really bad. This last year when my boyfriend Jay and I were in New York, I got sick a lot. And it was crappy for a few days, and painful and all the things that I described before. And then if I were to get sick on top of that, again, within another month, that version of it was so much worse. It just hurts and hurts. And it just gets worse and worse and worse. So it’s really, really important for people like me to never “slip”.
There is no such thing as cheating, because the body really can’t recover.
Lauren: How does that look, though? We’re in LA, and you were living in New York … these are places where gluten-free options are available. What about people who are in a food desert, as we like to call them … who are in the middle of maybe a farming state, where in terms of the produce they’re getting, maybe they’re not getting access to gluten-free options? Is it something where you have to say to yourself, “I’m not allowed to eat cake anymore”? Or are there ways to make that happen in a compliant way, so that your body doesn’t hurt? And when you’re traveling, what’s the challenge?
Becca: This is a tiny bit of a rewind in order to answer the question … but it was really important for me to educate myself, so I bought a bunch of books and I read — because I only barely understood what this meant. And so I did a lot of research in terms of what products are found in everyday supermarket trips. Where is there gluten hidden, what sort of dressings and marinades.
There are all sorts of ways in which people hide gluten. It’s used as a preservative, too; it’s in soy sauce. That’s a huge deal.
Now everybody seems to know that. But at the time, no one knew that though.
Lauren: Not everyone knows that, though.
Becca: It is a really big thing. So, like learning the things that I can specifically say in a restaurant … rather than saying, I’m allergic to this, or I’m intolerant of this — where sometimes you run the risk of someone not taking you seriously. It was important for me to be able to say, “Is there any this/ this/ this/ in this dish? Is there any flour? Is there any soy sauce? Is there any barley? I have a list of things that I can ask you about and if you say ‘no’ to all those things, then I trust that we’re all on the same page.” As opposed to generally saying, “I’m allergic to this, can you make sure it’s fine?” Eight times out of 10, that server is going to be, like, “Yeah, it’s no big deal.” And then you’re going to get sick.
Lauren: Although people do take food allergies more seriously in restaurants now, particularly because of anaphylactic shock.
Becca: Now, yes, absolutely. In 2010, that was not the case.
Lauren: Is it also something with celiac … where I know with nut allergies, for example, that people generally can’t even have food if it’s in the same facility? Even if the equipment’s been washed, and there were nuts on it, they can never have food that has touched that equipment. Is it the same kind of thing with celiac?
Becca: It can be. It’s not for me. As I mentioned, I don’t have such an extreme case. But I do have friends who have that level of allergy and here’s the thing … you order things that you are told don’t touch other things that are a problem, or you make your food at home. And that’s kind of that. The other thing I was going to say in terms of, if you’re traveling, how to find food that’s compliant.
I would say in general, the thing to think about is, whole, unprocessed, natural state foods.
Lauren: Fruit, vegetables and meat.
Becca: Nuts, things like that. For me, if I’m really at a loss, if I’m struggling to figure out what to eat, that’s what I go to. I go to the things that would never have had gluten in them anyway; I don’t have to worry about it. Things that are already in a state that I know and trust. That’s what I gravitate towards. And I think that’s generally speaking a good way to eat anyway, right? We feel better when we eat that way. I don’t always succeed at that at home …
Lauren: Interestingly, it’s very much like the Paleo diet. Or even Keto in some ways. Because you’re really just taking out carbs and refined anything.
Becca: Right. And an interesting thing, too, in terms of the way that, with knowledge over the last 10 or 12 years, with the knowledge and experience that we’ve developed as a culture, there’s also come an abundance of product that’s not necessarily good for us, either.
For me, when I couldn’t eat any cookies for a while, and then I walk into a store and there’s a whole wall of gluten-free option cookies, I’m going to eat all of them! And that’s not good either.
Lauren: It gives you that binge relationship to your eating, doesn’t it? Which is not healthy.
Becca: Absolutely. So, I still think no matter what, balance and as close to whole and untouched food is generally better for the body.
Lauren: You mentioned that there were a bunch of books that you got your research from. Were there books, or even communities, that you gravitated toward that you found to be the most useful for you in terms of learning about your illness?
Becca: The Celiac Foundation has a website … I don’t remember the exact address …
Lauren: I’ll post the link.
Becca: There’s a foundation, and now there are other multiple organizations that have online resources. These days, I just think that’s the best possible way. Some of them even have search tools where you can ask: Is this compliant? What about this particular product? And this sauce? And they’ll have listings. And then there are also sites that you can use to search for gluten-free compliant restaurants in your area. There’s also all this writing that’s been done about national chains, and the best option for varying degrees of celiac at certain chain restaurants. Especially if you’re on a road trip, and you’re stuck in the middle of nowhere … and what do I eat at Applebee’s, etc.?
Lauren: In a sense, it’s lucky you have this illness because so many people do have it. There is an awareness in the wider community that people are actually responding to in restaurants and supermarkets.
Becca: And in my experience, the best way to know if someone in that restaurant — or bar, or whatever, a diner — is on the same page with you, is if they ask you the question that you asked earlier: “Are you okay if something touches something else?” If they ask me that question, I know I’m in good hands. I can have french fries. A lot of people with my disease cannot go anywhere near french fries if the fryer isn’t solely used for fries alone, with no other product in that oil. At the bar/restaurant where I work, we have fried chicken on the menu, and they fry it in the same fryer. But I don’t get sick from it. I don’t know why; I don’t know if it’s the way it’s cooked it; it falls off, and if there are only microscopic pieces of flour. I don’t get sick, but other people would. And so it’s important for the person serving them to say, “Okay, how severe is it? Are you going to get sick if …?” As soon as I’m asked that question, I’m at peace. I know that I’m in good hands. Because I can tell you in all certainty what I can have and not have. But if you don’t ask me that question, I don’t know whether you’re actually present for what I’m experiencing.
Lauren: And that’s really good feedback, isn’t it? Particularly in the restaurant industry. It’s not enough just to be aware of people’s allergies and say, “Are there any allergies” if you’re a server or managing a restaurant, or even aware in the kitchens. You have to also ask about the severity of the allergies, if there are allergies involved.
Becca: For sure. Anytime I overhear someone asking a question about an allergy, when I’m at work specifically, but even sometimes when I’m just out in the world, I will interject … I will say something like, “How severe is it? What’s your deal? Where are you on the spectrum of this challenge with your body?” And if they say it’s really severe, I will point blank say to that person, “Don’t eat here. Because you’re going to get sick. It’s not because we don’t care about you. You are going to get sick. Don’t chance it.” I actually had a person with a severe nut allergy that I told, go away.
Lauren: Don’t even leave your house!
Becca: “I literally don’t even know why you’re here! There is no way.” And he said, “Yeah, I’ll go into shock and have to be taken to the emergency room.” Absolutely not.
Lauren: My first question would be, “And do you have an EpiPen handy for when you inhale peanuts?”
Becca: He said that he did, and I was still, “Please don’t eat here. I can’t sleep at night. I won’t be okay.”
Lauren: And it becomes a liability to you guys. That’s also, where’s the balance in terms of blame — or responsibility (is the word I should use)? If you’re someone who has an allergy, it’s as much your responsibility to tell people in a restaurant or wherever you are, as it is their responsibility to ask. That really should be a question that should be asked all the time, because there are more people with food allergies than not. And we’re beginning to realize that. And these are allergies that people have had for generations, but …
Becca: …they didn’t know what they were, or what the signs were.
Lauren: It’s partially the advances in science, but it’s also partially social advances, isn’t it? People talking about this more. Which leads me to my next question, which is about advocacy. It sounds like you’re pretty on it and you know your stuff. When you were finding out about celiac, did you, at any point, ever feel like you needed someone to advocate for you — either coming to doctors’ appointments with you, or even sticking up for you when you were at a restaurant? Did you need to lean on someone?
Becca: That’s such a good question. I think I probably did. And I didn’t have that at the time. Looking back on it, I feel like that would have been really helpful.
There was an element of shame when I would go out. If I called the waiter over and I asked about an item, I would get embarrassed and felt like I was causing a scene or disturbance.
And I was really, really uncomfortable with it for a long time. It would just make me so nervous, embarrassed, bashful, all these things, right. And I actually remember it carrying through until I met my boyfriend. I recall going on a date with Jay early, early on and thinking, ‘Oh my God, he’s gonna think I’m so high maintenance, he’s gonna think I’m so … whatever.’ So very, very uncomfortable with it. I think it would have been really helpful to have an advocate, especially when I was first figuring out what was happening and how to navigate it. And I had friends who had the same disease. And so I could use them as sounding boards. But I wouldn’t say that we were advocating for one another; we were just processing with each other. Which was valuable.
Lauren: Well, that’s the first step, too — you’ve got to process before you can advocate probably.
Becca: Certainly valuable.
Lauren: When you were a baby celiac!
Becca: I probably could have used more though, and I probably could have asked for more. Going back to the question of, was that because I was afraid to ask, or was that because I was depressed and going through my own other complicated psychological stuff? I’m not really sure. But I do think that it would have been lovely to have that; it probably would have helped me. And actually, Jay and I had an interesting moment about it maybe a year into our relationship.
The first time he saw me get really sick is when he became my advocate.
So when we go out, more often than not, he’ll say something about it; he’ll be the one to say, because he knows that it upsets me to have to be the high-maintenance person at the table. And so oftentimes, he will make a thing of it to the server, which is so lovely and sweet.
Lauren: Yeah. I was going to ask you, too, because this comes up a lot in these interviews in general … if that feeling of, oh, gosh, I’m high-maintenance, or I’m causing a scene, or whatever … do you think that if you were a dude, it would have been easier for you to stick up for yourself?
Becca: I don’t know. That’s such a such an interesting question.
Lauren: It’s a hard question to answer because we’re not dudes, and we don’t know. But I always wonder if there is a gender divide and how easy it is to stick up for oneself.
Becca: Well, the thing I can’t stop thinking about as I’m processing the question is, I don’t know any dudes with celiac and I think part of that is because they don’t talk about that sh*t as much. Even my boss, who did the allergy testing, he doesn’t actually have celiac. But he found out he had some other intolerances. But I can’t think of any other conversations I’ve had with men about this type of thing. So I’m not sure how to answer the question. I just feel like that’s such a can of worms that I’ve never even gone near. I’m not sure. Maybe?
I mean, probably, because we do know that women take more of this on. We take these sorts of experiences and internalize them and make them into a thing that most men don’t.
Lauren: Well, and I’m thinking in particular, because it’s related to food. Diet. And the way that we see ourselves, like, God forbid, I should say, is this gluten-free? Because will that make me look like I’m trying to be skinny. Or, I’m on a Cosmo diet or something. This happened to me. When I first got sick, I started doing elimination diets, and I was told, okay, avoid these seven foods. And it was a pretty long list, and I remember being in a restaurant with my family and saying to the server, “Okay, listen, there’s a list of things I’m going to give you. And if any of what I just told you I want to order has it in it … can’t have it. Or I need substitutions.” And I gave him the list, and he looked at me and said, “Is this a Cosmo diet?” And I told him, “It’s a legit illness.” So it’s interesting, because no one’s ever gonna say that to a guy … is this a Cosmo diet? Because dudes aren’t known for reading Cosmo … you know what I mean? But the association with, and the shame that’s associated so very closely to the eating disorder culture, and the way in which we judge women not just in this country, but in this world, and the differences in perception … so I’m really curious.
Becca: I really have no idea. If I suddenly became a man, and went back in time and experienced that whole thing all over again, if it would be different. I just know that some of the first things that people said to me were: “Oh my God, you’re going to lose so much weight.” That was what everybody said to me. Because I remember being, like, “Guys, I just got this testing done, I have this thing, it’s so crazy!
“You’re gonna lose so much weight, you’re gonna be so skinny.” And because I was also still quite disordered at that time, I thought, ‘Oh cool, I’m gonna get skinny. That’s awesome.’ Of course, none of that happened. And none of that matters. And the point is that, I was trying to figure out a way to treat my body the way it needed to be treated. And that kind of thinking and that sort of reaction to what I was going through was so f*cked up.
Lauren: Super disordered.
Becca: And it messed with me for a long time because then I started to think of it as a “diet” as opposed to something that I needed to do to be well. And those are different things.
Lauren: And as those of us in this chronic and invisible illness world play around with elimination diets and having to adjust what we take into our bodies — and I’ve experienced this firsthand myself, too — there is that transition between ‘I’m dieting to lose weight’, and ‘I’m dieting for my health.’ And it’s the health factor where it actually becomes very clear, where you say, ‘I just feel better when I don’t eat that,’ or, ‘… better when I eat this.’ And we’re not socialized to believe that eating well is going to make us feel good. It’s going to make us look good. So that dichotomy of the inner and outer perception is very interesting, particularly among women. Of course, this affects men as well. I’m always really interested to hear if people have experiences like that.
Becca: Absolutely every single person that I told in the beginning said something about weight and how I was going to look … like, “Oh, you’re so lucky. I wish I had an excuse not to eat bread.” The reactions ran the gamut.
Lauren: Oh, and also I have holes in my stomach lining, so f*ck you.
Becca: I was, like, “Are you kidding? That’s what you want to talk about right now?” It reminds me of that ridiculous line in Devil Wears Prada, where Emily Blunt’s character goes, “I’m one stomach flu away from my goal weight.” It was like everybody that I told thought, ‘Oh, this is going to be her excuse, her way that she gets to be super skinny. I wish I had something like that.’ And it’s, like, why is that where your brain goes? I can’t eat pizza for ever, b*tch! Like, really? I can’t have a beer after work, you stupid person!
Lauren: And that’s also a super prejudiced perception. And that leads me to another question … when have you found yourself in situations, or can you give us some interesting anecdotes where you’ve had to actually kind of justify your illness to other people? Where you’ve had to be, like, “Yeah, I know I look normal, but I’m really f*cking sick right now.”
Becca: I’m sure I’ve had plenty of them.
Lauren: Or to teach people to believe in something like celiac, too? Because maybe early on, people didn’t even believe it? I don’t know.
Becca: Well, I’ve certainly had people … not now, because now everybody sort of knows, it’s out there and talked about …
Lauren: It’s taken a decade.
Becca: It’s taken a decade. So, at the time, I did get a lot of people saying things like, “Oh, but you could just cheat and have a cookie.” Or, “I’m sure it sucks, but you can still have …” There was a lot of that, there was a lot of brushing it off. Actually, I do recall going out to dinner with a girlfriend in New York, and asking for something really blatant. Like, I said, “I want a sandwich without the bun.” Or something like that. And, especially in New York, it’s a different thing from LA and the celebrity culture where everybody’s always on a diet and I wouldn’t have been looked at so strangely … but the person who was serving us was, like, “Oh, okay, sure.” And then it came on bread. And I remember having to call the person over and say, “I can’t have that.” And she was, like, “Well, just take it off.” And I said, “No, that isn’t the way this works. I do actually have a disease. And I can’t have it if it has touched bread. I need it to start over.” This is silly, but I get such joy out of being able to go to a fast casual place and get a sandwich like a regular person … so this is not a plug, I promise … but Jersey Mike’s has gluten-free options now so you can go and get a sub on gluten-free bread.
Lauren: How inclusive! Thank you, Jersey Mike’s!
Becca: Yeah, so I discovered this not that long ago. And there’s one like two blocks from where I work. And on days when I don’t have time to make things at home, it’s so satisfying to go and order a subway sandwich. And it also reminds me of getting something like a subway sandwich before my softball practice or whatever with my dad. It’s nostalgic for me, too. It just makes me so happy that I can have it on gluten-free bread. They’re generally really good … but this was a couple of weeks ago … they were busy enough and they’re supposed to change their gloves and change the surface that they’re making the sandwich on. They always ask you, “Is it an allergy or a preference?” And I always say, “It’s an allergy.” And so they switch everything. And there’s an assembly line, and the second or third person in the line, who’s supposed to be doing this stuff, grabbed a piece of bread … touched something that was really bad, and then started working on my sandwich. And I said, “I’m so sorry, I can’t eat that.” And they’re, like, “What do you mean?” And I said, “I have an allergy.” And it was funny, because one of the guys standing next to the person who made the mistake was, like, “Yo, dude, allergy! You gotta change, you can’t touch …”
Lauren: So they are trained.
Becca: And that one person was like, crap, I f*cked it up, you know.
Because it’s not your reality, so you just think, whatever. It takes some time to build up that level of awareness.
So, sure, I’ve had moments where I’ve had to justify it. And back to my experience with Jay, my boyfriend … I think on some level he thought I was making it up at the beginning of our time together. I think that there was a part of him that was, like, ‘Yeah, yeah, okay.’ And then the first time he saw me get really sick, he said, “Holy shit, I feel bad. I didn’t realize. This is really not fun.” If I get really sick, I can’t leave bed. I’m in bed for half or three-quarters of a day. I’ve had to leave work multiple times. I also had experiences in New York when we were back in 2017; I had an experience where my boss was a real jerk about it. I had a flare-up in the middle of a shift and I was really, really sick and I could barely stand up really sick. It was one of those where the symptoms are also different, depending on what you eat, which is really unfortunate. Whatever I had that day … I was so crampy, I could barely stand up. It was just so uncomfortable. And I went over and left the bar; I went to talk to my boss, and he said, “I need you to stay.” And I was, like, “I’m sick. I’m visibly sick. Why would you want me to stay and serve people?” By the way, raw oysters … I worked at a seafood restaurant! Why would you want this serving your customers? And he eventually sent me home. But I remember he was kind of weird to me for a while after that, like he felt he had to bend over backwards to accommodate me. When it was … I got sick. People get sick.
Lauren: And if it had been the flu, he wouldn’t have been able to do anything about it.
Becca: Exactly right. So sure, I’ve had moments over the years where I get a little bit of pushback. These days, in my 30s, I give zero f*cks.
I’m not ashamed. I don’t care. I know how terrible it is when I have a flare-up. I am not about to make space for someone else’s bullsh*t.
If I know that I can’t have this thing … if I know that I taste something that’s wrong … or there’s soy sauce or there’s crumb where there shouldn’t be … I will send it back. I have no problem with that now.
Lauren: It took time. It’s taken a decade.
Becca: Exactly right. It took a long time for me to feel comfortable doing that.
Lauren: You were talking about how you were in that sort of dark space psychologically when you were in New York and learning about yourself and you were sort of in that weird limbo space … do you think that, in a way, the illness has shaped your perception of yourself? Or in some way positively contributed to your ability to say what you need?
Becca: I would say so.
I think that it has given me an even deeper understanding of how much of an advocate I can be, and I am for myself.
I developed that skill where I don’t feel like I really had it before. So that in that way, it has certainly allowed me to grow very specifically. When I was younger, I had a hard time asking for what I needed. I still sometimes struggle with that. But this disease makes it impossible not to ask for what I need. It is impossible because I refuse to be sick. It forces me to really ask, and to be specific and demand that specificity from others. I never had a reason to do that in the same way until I got sick. So yes, I do think that helped me develop in that way.
Lauren: At least to develop that strength, or resolve.
Becca: Yeah. And I think it also helped me to connect to other people in a really beautiful way, you know. Talking about allergies — as you’re doing right now. Issues of the body that are internal, that are maybe not apparent to everyone around you. Being able to connect with others who are going through experiences like that really helped me own, and kind of relinquish, my shame around it — and feel like a sense of community, like I wasn’t alone. There is a place that recently closed — which is very sad — on the Upper West Side of Manhattan called G-Free NYC. And it was a tiny little space, maybe 200 square feet.
Lauren: Like a kiosk basically.
Becca: A specialty grocery store, 100% gluten-free. And I discovered it the first time I lived there, and it was still open when we went back in 2017. And I would just stand in there and talk to the owner; she had celiac and also a bunch of people in her family [had it]. And she developed this whole community energy around her store, and people that lived all over the area would trek to her once a week to do their shopping. They had everything; stuff that I hadn’t had in a decade.
Just being able to connect with people about it, I think really helped me feel less alone, less ashamed, and more empowered – most importantly.
Lauren: You talked a bit about getting sick at work. Can you walk us through a little bit of what a typical day looks like for you? And where you’re making accommodations for your illness? And also tell us, along that journey, how you’re balancing the demands of work and life to fit around everything?
Becca: I am very much a breakfast eater, so I always have food within the first hour I’m awake. I generally have coffee first. I don’t love to have coffee and food together; I’m really finicky about that. I don’t know why. Recently I acknowledged this! I’ll have a coffee, and I will make a breakfast that is gluten-free. So recently, I’ve been on a yogurt-nut-fruit kick. But otherwise, I’ll make gluten-free toast with eggs, and maybe some cheese. And if it’s not that, maybe I’ll do a breakfast burrito wrap and a gluten-free wrap, or something of that nature.
Lauren: You were telling me you had a smoothie this morning, with celiac-compliant ingredients?
Becca: Yes. So today … I had had a couple of symptoms, small little moments over the last few weeks, some of it I believe to be stress-, emotionally-related. These things are all related, as I think most of us know now.
The gut health and the mental emotional health are completely intertwined.
So, I had been feeling sort of off recently. I have this medicinal shake that I try and take a couple of times a month. When I have a flare-up, I’ll have it every day. It is full of 1,000 things I couldn’t even begin to name for you — some pea protein, some all-natural protein … so it does actually work as a meal replacement if you want it to. You don’t have to use it that way. It has a ton of vitamins and minerals. Most importantly, it has a sh*tload of turmeric in it so it is this neon orange color. It was given to me by a doctor — a chiropractor and acupuncturist in my hometown of Ithaca, New York. When I was living in New York in 2017, and I was getting sick a lot, I was really not doing well, and we took a trip to my hometown, and I went and saw this woman. She told me about this shake that she had been giving to a young patient of hers who had full-blown Crohn’s disease. I think a seven- or eight-year-old girl who was having a hard time. Crohn’s is rough. I feel very blessed that I’m not anywhere near that reality. But this shake was given to this girl; she was taking it every day. And the doctor told me that she was actually healing her gut, healing her Crohn’s — that the medicine was actually going in and doing the thing that no one else was talking about yet. Which is, you have to actually heal the damage that’s been done. As I mentioned earlier, the more you eat, the worse it gets. So somewhere in there, some healing action has to happen. So I started taking the shake; I was really diligent about it. I was having it every day for about a month. And it was everything. I felt so much better, so much stronger. I wasn’t having those moments in the middle of the day, like, ‘Oh, wait, something’s wrong again.’ I felt 100% better. So I made the shake this morning. Every little while, I do it sort of as a maintenance thing. It just helps strengthen my system.
Lauren: Which is smart.
Becca: Yeah, actually, I got a new package of it when my boyfriend was sick a few months ago. He had a massive infection in his intestines. And there were a lot of questions about whether this was Crohn’s or IBD coming to life in his body, or some other gastro-intestinal issue. And so I got more of the shake to make for him.
Lauren: So you knew there would be no harm in him having it.
Becca: No harm at all. And that it could potentially help heal him in a way that he hadn’t yet been able to do. So, I do very much enjoy using that shake. It’s not every day that I have that, but I did have that this morning. And you know, the rest of my day before I go to work usually involves some sort of exercise, some sort of secondary meal. It’s either a salad or a sandwich most of the time, depending on what food we have in the house.
Lauren: Gluten-free bread, of course.
Becca: Gluten-free bread. I can’t go without gluten-free bread in my life. I can have rice. I can have corn … as long as those things are 100%. I can’t have corn that’s touched flour. Mexican restaurants are the best because there’s so much corn used in that cooking.
Lauren: I was thinking flour tortillas …
Becca: I can’t have those. Chips are usually from the corn tortilla, and I can have tacos and all that stuff if they’re on corn. And then, you know, I go to work, and for the most part my shifts are six to eight hours long and I struggle to find a way to eat in there. So I am such a granny, and I always have a snack in my backpack.
Lauren: (laughs) People with chronic illness … we always have snacks. So, make friends with a friend with chronic illness!
Becca: For sure, you will never go hungry. So I almost always have some sort of protein cookie, gluten-free of course. A protein bar, gluten-free of course.
Lauren: Something that will sustain you.
Becca: Yeah, something that has high protein in it.
Lauren: This requires planning in advance, too.
Becca: When I go grocery shopping at the start of the week, I will buy those sorts of things. I will make sure that I have a stash of snack-like things that I can throw in my backpack. And if I’m really busy at work and I didn’t have time to bring a meal with me from home, I can run to the back and shove it in my face, so I’m not dying. But I often bring my food to places — and that’s the thing that used to carry a certain amount of shame for me.
Lauren: Movie theaters also don’t let you!
Becca: Well, if you have a big enough backpack, they sometimes don’t even look.
Lauren: That’s the way to skip through that loophole!
Becca: I can have popcorn, so it’s not as hard for me. I love popcorn, the crappy movie theater popcorn … it’s so good! But I used to feel so nerdy bringing a Tupperware with me somewhere. Now, I just don’t care, I will bring a Tupperware full of crap wherever. To work in particular, on the plane sometimes. I have no shame now, but I used to. I think that encompasses everything. Otherwise my day-to-day eating is normal — until I don’t feel well. Jay and I will go out to eat; we went to a restaurant in downtown LA this last weekend, an Italian restaurant. They don’t have gluten-free pasta, but I was able to have risotto, which was delicious. I was able to have a pork entree with him that was delicious. We had a lovely meal, and I had no problem. If I had had a problem, then the following few days would be about recovering and maintenance, and all that stuff. So, for the most part, my day-to-day routine looks a lot like quite a few people’s — until something is up and then I have to do more maintenance.
Lauren: And it sounds like you’re eating meat and dairy. If you were vegan, it would probably be a lot more …
Becca: I’ve gone through phases where I’ve thrown around the different dieting ideas, and I just cannot do it. I can’t do it. I need to just eat like a regular human — whatever the hell that means these days. I can’t give up my gluten-free bread; it makes me feel grounded. It makes me feel sustained and normal. And there’s really something to that; whether it’s the psychological piece or not, I don’t care. I just like it. I will often have gluten-free pasta in the house. I enjoy a lot of cauliflower products, too. So I’ll have cauliflower pizza in the freezer most nights, cauliflower gnocchi from Trader Joe’s … Trader Joe’s has gotten really good with their product lines. They have a lot of options. But in general, eating out makes things more and more tricky. So I do my best, most weeks, to handle my own food as much as possible. If I can hit 80% of the time, if it’s food that I’ve prepared for myself, then we know we’re in pretty good shape. This is why I got so sick in New York so much. I wasn’t cooking. We were eating out all the time. It’s just more likely; the odds just go up that I’m going to get sick at some point.
If it’s not my own kitchen, if I’m not handling it, who knows?
Lauren: If you’re not in control of it, yeah.
Becca: I try and keep it to that point. Obviously, there are some weeks where that’s just impossible. But we do live in a city that’s very friendly for people like me. So I don’t have that much of a hard time.
Lauren: We touched on advocacy earlier, and I was wondering if your experience has led you into any kind of advocacy with regard to your particular illness, or invisible illness in general? Have you found yourself advocating for others — even on a small scale, like helping your friends go to the doctor and ask for the right tests, or go to the restaurant and know how to order?
Becca: I think the way that it shows up in my own life is that I end up explaining it to people a lot. Even though we hear about it enough, it’s written about enough, it’s out in the cultural consciousness enough, I still end up explaining it a lot to people. And I’m perfectly happy to do so.
Lauren: It’s a generous thing to do.
Becca: I don’t mind, and I also always say … there’s a lot about this that I don’t know. I’m not a scientist. I’m not a doctor. I can only speak about my own very personal …
Lauren: You don’t play one on TV. Grey’s Anatomy, are you hiring??
Becca: They just renewed for another season. I’m available! It actually brings me joy to talk about it, mostly. Obviously if I’m in shitty mood and I don’t have time, I really don’t want to.
Lauren: And if you’re sick.
Becca: Well, if I’m sick, I really don’t want to. But in general I’m happy to talk about it, because I think it’s important for people to learn about. If it helps one other person feel like, ‘Oh wow, maybe I want to do the testing. That’s so interesting.’ Then, great. Or, ‘I have a lot of those similar symptoms. I never really thought that this was a thing that I could name. Maybe I’ll do something with that.’ I often say, these days, to people to do your own, if you can — to do your own elimination and diary around it. The testing is really expensive. I’ll just say that.
Lauren: I will say, there are a number of companies out there now that are also doing breath tests and …
Becca: Oh, yeah, like at-home testing, right?
Lauren: Yeah, and even DNA testing that can help you determine this, so … Or if you’ve done things like 23andMe or that kind of thing, you can send them to other companies for further analysis.
Becca: Oh, that’s great. Because that wasn’t at all a thing.
Lauren: But that’s starting to happen now.
Becca: That’s awesome. Yeah, if something like that had been available to me when I was discovering it … back in the day, if I remember correctly, the testing was, like, $5k. It was really expensive.
Lauren: And it wasn’t covered by insurance?
Becca: I don’t remember. I know I was on my parents’ insurance. I just recall that it was expensive. I don’t know if our insurance covered the whole thing, or what happened. Obviously, I was a child fresh out of school, and my parents paid for it. I did not pay for it. I was very lucky. My parents – I don’t know what they had to pay for it.
Lauren: You’d think that would be covered by insurance, at least partially.
Becca: I think part of it was. But it was not required; it was voluntary, it was a choice to go and get that testing done. It wasn’t like I was in dire need of the solution.
Lauren: But the testing also proved that you had a disease that you need to carefully monitor.
Becca: I could find out, I could ask my mom. I’m sure my mother would remember. I can’t imagine my father would. But I don’t recall exactly what happened with the paying for it part. I just know that it wasn’t cheap. And I’ve since told people, if you can take care of a good amount of it on your own, or through some of these companies that will allow you to do that testing in the privacy of your own home, I say go for it.
Because I do think that actually, if we are diligent and dedicated to figuring it out on our own, we can.
We don’t necessarily need to be pricked and poked at.
Lauren: And sometimes doing a food journal, which can be triggering for a lot of people, right?
Becca: It’s also hard to keep on top of. I wouldn’t have been able to do that, because I’m not good at keeping on top of that kind of thing. I would forget, and probably lie! You know … I don’t want to talk about that other cookie I had! And it is a total waste of time and energy if you’re not being honest about it. So, depending on who you are, and if you can use the 23andMes of the world to get those those answers, yes, by all means.
Lauren: Well, if it’s not them, it’s other companies.
Becca: The doctor that helped me in New York … I remember saying, this is good. Because I wouldn’t have done it if I hadn’t had a doctor telling me. I needed to have a doctor tell me, “No more beer for you, Becca.” Do you know what I mean? There was something different about hearing it from a doctor, than if I had just been, like, ‘I guess I’m allergic to beer.’ I was also a kid though, so maybe I’d feel differently now.
Lauren: It was also an authority figure. So … I like to wrap up my interviews with some Top Three Lists. I love a list! I was wondering what your Top Three Tips would be for someone who may be on the edge of entering this invisible chronic illness world, and what you would recommend for them to do to start leaning in and managing everything? … She’s got her thinking face on! (laughs)
Becca: Well, I think the very first thing that I would recommend is to inform yourself in the way that feels least overwhelming. If that’s Googling for you … if that’s going to a bookstore and sitting in the health and nutrition section, and just picking up some books … whether it’s on lactose intolerance, celiac, Crohn’s, IBD, whatever the case may be. If it happens to be gastrointestinal. I actually really love hiding out in bookstores. So if that’s your thing, by all means. But if Googling is where you feel comfortable, great.
Whatever you can do to get yourself to the place where you feel more informed and more empowered. That’s huge. Because I do actually think that’s the biggest piece — because then we can go out into the world and feel like we know how to confront our days.
Lauren: Knowledge is power!
Becca: That would be a really big thing for me. And inside that experience, if you happen to stumble upon a community that you’re psyched about — whether it’s an online forum, or a foundation or an organization that’s really advocating for other patients that are going through the same thing — great. If you feel less alone, awesome.
I would say, too, think really clearly about what are the things that you like to have in your day that you just don’t want to give up, and how to allow those things to still exist. So you’re not feeling like this disease, this issue that you’re having internally, is taking you away from the things that bring you joy in your life. Because I do also think it’s important to maintain the psychological and emotional well-being whilst healing ourselves.
Because if we feel like, ‘Well, shit. This just means I can never have pizza again. And I’m never going to be happy again.’ If we go down that path with it, letting the victim mentality come in, then we’ve just undone so much lovely work. For me, I gotta be able to have a sandwich. Okay, so let me start an experiment where I’m going to find my favorite gluten-free bread brand. I’m going to go buy a bunch of loaves of bread from the store, and I’m going to try them all and figure out what my favorite brand is. And then I’m going to talk about that, and share that with my friends. And that can make me feel, again, a little bit more empowered in my own experience.
Lauren: And that can give you joy when you feel like you’re losing it.
Becca: Absolutely. I think those are my first two. And my third would be: to own the label — but not let the label own you. So I have celiac, but I don’t walk around every day like: I’m sick. Because that does a number on me psychologically. I can’t personally walk around in the world feeling like a sick person if I’m not. Because it’s actually not really accurate.
I have a disease, but I’m not a sick person.
I’m perfectly healthy right now. So that may seem like a secondary thing, but I do feel like that’s so important. Because, first of all, when we encounter people like that in our lives, we’re not so psyched on that, right? If I meet a person who says, ‘I’m just a really sick person all the time, poor me’ … I don’t love that. But if they’re willing to open up and share with me what they’re going through, and we can connect on that common level … like, “Oh, you have this thing? I have this thing. Let’s chat about that.” That’s awesome. But I can’t walk around in life, as if I’m the victim of this, because I’m not. I’m very much in control of how I treat my body. And that’s ultimately the thing, right? I will have good days and I will have bad days, but I am not a sickly person. It’s important to not let myself go there.
Lauren: In terms of the adjustments that you’ve made to your lifestyle, I’m wondering if you have … and this doesn’t even have to do with adjustments to your lifestyle … but if you’re having a flare-up, do you have comfort activities? Or do you have guilty pleasures, things that you’ll cheat with? What are your Top Three Things that give you joy that you’re not willing to give up?
Becca: Well, I love ice cream — and all things sweet and cold. All of them; I do not discriminate. I love all of you, all of you icy, sorbet, everything, all of it. Oh, I just love it so much! When I was younger, if I was home sick from school, I would eat like an entire box of fruity popsicles. I don’t know, it just makes me so … I just love cold and sweet! Oh, this is the thing that I always do … I’ve learned this from my mother … my mother is amazing at: “I don’t feel good. I’m not doing it!” So if she feels even remotely sick, she will cancel all of her appointments. She does not go anywhere. She stays home, she gets under a blanket. She reads a book. She does not. So I’ve gotten this instilled in me from a really early age.
“If I’m not well, I’m not doing it.” So I will call out of work. I will cancel my day. I will just say like, “Nope, can’t do it. Because I’m not well, and it’s important for me to take care of myself. You can wait, we can reschedule.”
So once I do that, once I clear the day, I do normally want some ice cream. That normally happens, and it can really be anything. Like I said, I don’t discriminate. And binge watching some sort of TV. And these days … I’m just going to go right into the world of marijuana. These days, getting high really helps me. So, I tend to orient myself towards indica, because I find that makes me feel less crazy. I was never really big into the use of weed in my life. I grew up around it; it was really kind of everywhere in my hometown of hippy, dippy, Ithaca, New York. But it was just never really my thing. And actually relatively recently, in the last five years or so, I had a lot of sleeping issues, and a friend recommended to me that I try using CBD oil and/or indica to help me relax and let go of some anxiety that was preventing me from sleeping. And the fun byproduct of that was that I found out that it’s actually really helpful for my gut. If we’re going to go back to talking about the mental/emotional connection to the gut, when I am relaxed, it’s relaxed — and it feels better. And so yeah, that’s my other thing. If I’ve canceled my whole day, and I don’t have anything to do …
Lauren: Ice cream and weed!
Becca: Ice cream and weed, not necessarily in that order! On repeat.
Lauren: That sounds so great!
Becca: And it really helps.
I used to do the thing where I’d feel, ‘Oh, I haven’t done anything today, I feel guilty.’ No, what I’ve done today is help myself feel better.
So I definitely do those things.
Lauren: Taking that time to heal, too, which is so important. Because a lot of the time, we are in this culture where we’re, like … Okay, gotta keep going! Gotta show up for work, and do all this stuff! And sometimes, that just makes you worse.
Becca: It really, really does. My emotional/mental well-being is so directly … you could chart it, it’s so directly connected. That I just know, I can’t talk to myself that way. And when I start to, I have to just somehow top it. And I have to just take that extra time, because the more I feel like I’m in tune with my own body and taking care, and being present for myself — the more I’m ultimately ready to go back out into the world and do the crap I need to do on my ‘to do’ list. But otherwise, the ‘to do’ list can wait. I’m a lot of things, but a workaholic is not one of them. I don’t know how I ended up in that state, but it certainly helps me take those extra days that I need to heal.
Lauren: Well, maybe we’re all recovering workaholics in some way anyway.
Becca: Maybe. And I think a lot of us should be.
Lauren: Well, Becca, thank you so much for joining us.
Becca: This was so nice. Thank you!
Lauren: So glad to have had you on.
Becca: I’m gonna eat the rest of my amazing lemon poppyseed, gluten-free lemon poppy seed love… crinkle! crinkle!
Lauren: Which I brought as a little treat for you! That was one of those things where like I brought it and I said, “I’m pretty sure they probably make on the same equipment …”
Becca: Oh, it is so good!!
Lauren: But she’s able to eat it because it’s from the same equipment, but she’s not as severe.
Becca: She’s crying, it’s so good!
Lauren: Thank you so much. And we look forward to hearing more about your journey.
Becca: Thanks, Lauren!