This episode of Healthful Woman covers Celiac disease and following a gluten-free diet. Hear from Casey Seiden, a registered dietician, and Nili Fox, Dr. Fox’s daughter who has Celiac disease. They discuss the diagnostic process, common signs and symptoms, and tips for following a gluten-free diet.
“Celiac Disease and Gluten-Free Diets” – with Casey Seiden and Nili Fox
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Dr. Nathan: Welcome to today’s episode of “Healthful Woman,” a podcast designed to explore topics in women’s health at all stages of life. I’m your host, Dr. Nathan Fox, an OB-GYN and maternal-fetal medicine specialist practicing in New York City. At “Healthful Woman”, I speak with leaders in the field to help you learn more about women’s health, pregnancy, and wellness.
All right. I’m super excited about today’s podcast because we have two special guests today. Our first special guest is Casey Seiden, who’s been on the podcast before. Casey is a registered dietician and certified diabetes educator. And Casey works with me and with us at MFM Associates. Casey, welcome, how you doing?
Casey: Doing great, glad to be back with you.
Dr. Nathan: Fantastic. And our other special guest is the one and only Nili Fox, my daughter, my third wonderful human being. And she’s sitting right across the desk. I mean, Nili, welcome to my office. Welcome to the podcast. I love seeing you, so great to have you.
Nili: Thank you.
Dr. Nathan: And I know that you were anticipating being on the podcast at some point. We’ve discussed this, yes?
Nili: Yes, yes.
Dr. Nathan: Ever since your sister got on and, you know, you’re like, “What’s going on? Why am I not in the podcast?”
Nili: Now it’s my turn. It’s good.
Dr. Nathan: Fantastic. And so just to set up who Nili is, so Nili, you just graduated high school.
Dr. Nathan: Congratulations. What are you…
Nili: Thank you.
Dr. Nathan: …doing now that you’re a high school graduate?
Nili: So right now, I’m pretty much just hanging out before I leave for campus summer to work as a counselor. And then in the middle of August, I’m taking a gap year in Israel, so I’ll be there until June and then I start college in the following fall.
Dr. Nathan: Right. And you’re gonna be in the Midwest for college, right?
Nili: Yep. I’m going to Washington University in St. Louis.
Dr. Nathan: Fantastic. And then, Nili, you’re on the podcast not only because you’re super and wonderful and awesome, but you have tremendous insight into this topic on celiac and gluten-free diets, correct?
Nili: Yeah. I was diagnosed with celiac about seven and a half years ago when I was 10 years old, then I’ve been keeping a gluten-free diet ever since.
Dr. Nathan: Amazing. So we’re gonna do this podcast with the three of us. We’re gonna get… I’ll be peppering questions and throwing in-jokes. And Nili is gonna give us the personal experience and advice for gluten-free diets. And Casey, you’re gonna provide some of the, sort of, professional advice that you give your own clients regarding gluten-free diets and whatnot. So thank you both for coming on. Let’s get started. So, Casey, how often do you see people who either need to be or want to be on a gluten-free diet?
Casey: Yeah. It’s important that you kind of clarify, yes, the need versus the wants. I feel like I tend to see more people following a gluten-free diet because of some personally suspected intolerant or, you know, gastrointestinal upset from possibly gluten. That’s what they’ve kind of, you know, narrowed it down to be without any actual blood work or lab testing to identify that. It’s also trendy, almost in a sense, to follow a gluten-free diet. So I think that’s probably more common in what I see. Truthfully, the prevalent actual diagnose celiac disease is really… It’s less than about 2% in the entire world. So people with diagnose celiac diseases comes across my table a little bit less frequently.
Dr. Nathan: Yeah. And so, Nili, if you could explain what exactly is involved in getting diagnosed with celiac specifically? What had to happen?
Nili: So, actually, I was totally asymptomatic, so I had no clue that I had celiac. And I went for an annual checkup and they took my blood just to test a few things. And then, the test results came back positive for celiac disease. And I was so confused. I’d no clue what it even was. So we had to go back and I ended up getting an endoscopy. So they pretty much stuck a camera down my throat and the test results came back positive and they said it was one of the clearest cases they’ve ever seen.
Dr. Nathan: It’s a crazy thing. You really need to have that endoscopy and a biopsy of your intestine to get diagnosed with celiac, so a lot of people don’t do that. And I remember it was so crazy because again, you had no symptoms.
Dr. Nathan: And you’re having this endoscopy. And at the time, my father-in-law, your grandfather, who’s a gastroenterologist, you know, for adults and not for kids, like got to see what it was on the camera. And it was also interesting to us that you would have that. And it’s just fascinating, this condition. And the thought is that gluten, which is really a component of wheat and barley and rye, sometimes oats, can have an effect on the intestines in immune fashion like it’s not allergic per se, but it’s more of an immune-mediated reaction which can damage the intestines. And classically was only diagnosed in people who, you know, didn’t absorb food, they had tremendous, you know, weight loss and they were malnourished, and they were very sick. But now that there’s a screening blood test, we get to sort of find it before any of those things happened. And Casey, and the people that you see with that sort of 2% really have celiac, do you find that they’re, you know, well because they’re on a gluten-free diet or are they always struggling with their health because of the celiac?
Casey: Most of the people when I end up seeing them, whether that’s before they become pregnant or oftentimes during pregnancy, you know, it’s a condition that they’ve probably been managing for many, many years. So they’ve gotten very used to it. I sighed for when they have maybe an accidental exposure to gluten and they have a flare, they’re normally feeling pretty good. They are not really… At least from any of the blood work that I’m able to see or that we’ve actually taken, they’re not exhibiting any signs of deficiencies or anything and their symptoms are well-managed by strictly adhering to that gluten-free diet.
Dr. Nathan: Right. And Nili, have you had any instances over the past, you know, seven-plus years where accidentally, or even intentionally, you had gluten and if so, did you even have any symptoms or side effects from it?
Nili: Oh, yeah, definitely. There have been times where either I made a mistake or someone else made a mistake and I never even realized.
Dr. Nathan: You didn’t even realize so you did not have symptoms.
Nili: Yeah, until I guess a few hours later when someone told me, “Oh, by the way, that wasn’t gluten-free.” And I’m like, “Oh, I had no clue.”
Dr. Nathan: Right. But predominantly, I mean, you know, 99% of what you eat is gonna be gluten-free because again, like you said unless there’s a mistake or something like that.
Dr. Nathan: Yeah, and one of the nice things about celiac is that if you’re on a gluten-free diet, you’re basically cured. I mean, that’s just how it is. You don’t have any symptoms whatsoever. And for you, we really don’t know what would happen if you started bingeing on gluten, how sick you might get. But we haven’t tried it.
Nili: Yeah, I don’t plan on trying it.
Dr. Nathan: So for whatever reason, so whether it’s a diagnosis of celiac or other reasons, you know, Casey, what do you see as benefits to a gluten-free diet? Is it universal or is it individual, or do you really think that it’s, you know, kind of hocus-pocus for someone who does not have celiac?
Casey: Yeah. For the vast majority of people that don’t have celiac, I don’t really recommend following a gluten-free diet, unless we do a little bit of a trial elimination, and we do see that potentially they’re more sensitive, but going through that process, you know, sometimes we realize, okay, maybe it’s not the gluten, perhaps it’s other things that you’ve maybe heard of, this group of components of food that we call FODMAPs, these very fermentable types of carbohydrates which kind of have overlap with foods that also contain gluten. So for them, sure, it might be beneficial to remove some of those just higher FODMAP-containing foods but maybe not necessarily all gluten-containing foods, if that makes sense.
Dr. Nathan: Yeah. When you said FODMAP, Nili and I at the exact same time gave big nods. Because we are very familiar with FODMAP because, in our family, we have someone who’s on a FODMAP diet, which is very restrictive. It’s like gluten-free on steroids. It’s a very restrictive and… But some people really need it.
Casey: Well, nothing about the low FODMAP diet, unlike celiac, right? Celiac is a lifelong, you know, diet you’re supposed to follow because you will get symptoms. The low FODMAP diet and its total core, where you eliminate kind of everything, isn’t necessarily meant to be followed long-term because there is that risk, which is again why I don’t recommend someone just going gluten-free either is because there is that risk that we will lose out on certain nutrients, we might lose out on certain fibers by restricting our diet kind of in unnecessary way.
Dr. Nathan: And so what are the reasons that people tell you that they need to be on a gluten-free diet that you either end up agreeing with or end up sort of, you know, testing and challenging and maybe, you know, having them back off a little bit.
Casey: Sure. It’s a lot more of those subjective symptoms. It’s, you know, people feeling like they have just unexplained bloating or gas, they kind of get that like fatigue-y, fuzzy head, just like brain fog, they’ll kind of call it, things like that. So those are maybe more of the non-classical symptoms that could be triggered by gluten or one of those FODMAPs.
Dr. Nathan: Nili, I want you to take us back when you got diagnosed. So you’re 10 years old. I can say for absolute certainty you’re extremely adorable at the time.
Nili: Thank you.
Dr. Nathan: You’re welcome. And you get this diagnosis and it’s life-changing, right? You’re told, “All right, all these foods you eat like 30% of them, nomás, you’re not eating them anymore.” What was that like for you at the time?
Nili: When I first got the call from my mom who told me what was sort of happening, I was eating a cupcake, eating a bagel, and everything I couldn’t eat was what I was eating at the moment. And for the fall, the upcoming week before my endoscopy, they actually told me to continue to eat as much gluten as possible. So that was still me being normal. And then pretty much right after it was a lot of rice, a lot of quinoa. And I was definitely confused in the beginning. I didn’t really know what wheat was, was barley, malt, I’ve never even heard of half of these things. And then I slowly learned through a lot of trial and error, which items are gluten-free, which are not. Because a lot of times I find that there’s gluten sort of hidden in a bunch of products. But I remember my mom got me a bunch of these children’s books sort of explaining celiac, what it was, the foods equity, how to manage it, and that definitely helped. And I think it really just took a lot of trial and error through different recipes and new foods. And it definitely got easier over the time.
Dr. Nathan: What was it like initially sort of just emotionally, were you disappointed? Were you upset or were you just like, “Whatever, let’s do this.”
Nili: It was a mix of everything. I was definitely first confused, and then I was probably scared because I heard the word disease. And when you’re 10 years old, hearing the word disease is pretty scary, even though it wasn’t as serious as I thought it was. And then after that, it was sort of a lot of nervousness as I didn’t know what to expect when I would go to other people’s houses or birthday parties and school. So that was definitely on my mind a lot. But then I realized it wasn’t so bad and it’s very manageable.
Dr. Nathan: And Casey, for you when you have people who come to you, let’s say who have celiac or something close enough that they really should be gluten-free, do you find that it’s for them difficult because of the idea that they have a disease or just the practical nature, or that they’re just gonna miss foods? Like, what is it that they seem to be struggling with?
Casey: Yeah, I think the practical of it, for sure. You know, you get that basic education, but I think a lot of the times in those same social situations, as you were mentioning, you get so nervous to eat anything because you have no idea what’s there, what’s lurking in certain foods or recipes, you’re maybe afraid to like speak up at a restaurant, like ask questions. So a lot of the times they’ll end up ordering, just like steamed broccoli and chicken because that’s a safe food. And I think that is real, like gets wrapped up into a lot of the stress and just feelings of kind of like restrictiveness with this diet even further.
Dr. Nathan: And then, in terms of my own recollection, Nili, I remember you were awesome about it. You were… I don’t wanna say surprised because, you know, you were an amazing kid. So we weren’t really surprised that your attitude was good, but we were just… You handled it better than we would have. Let’s put it that way. And you were like, “Okay, you know, fine. So I won’t eat this, I’ll have this instead.” Or, “Okay, I’ll make sure to have gluten-free pizza instead of regular.” And you were pretty low key about it, or at least that’s what you, you know, portrayed to us. Maybe you didn’t want us to feel bad, I don’t know. Maybe secretly you’re in your room crying about it, but you didn’t tell us.
Nili: No, I wasn’t. It’s definitely easier to find out when you’re younger, as opposed to when you’re older, because…
Dr. Nathan: That’s interesting.
Nili: …when you find out when you’re older, you’re sort of very used to eating a certain way, and then all of a sudden, you’re told you can’t have all this food. But when you’re younger, I think it’s just much easier to cope and sort of adjust your food style because you don’t really realize what’s happening. So if my mom would just serve me chicken instead of chicken and bread, I wouldn’t really notice.
Casey: Yeah. And just when you’re younger, you have the help, right? And you’d be like, you know,…
Casey: …mom and dad know, you know, the groceries to buy and things like that. They’re the ones bringing it into the house and being that first line of defense. But as an adult, all the weight is on you. You have to do all the label reading yourself, educate yourself, which I’m sure could feel really overwhelming.
Dr. Nathan: That’s so interesting. Do you find that with your diabetics as well? Because that’s a huge change in not just what they eat but their entire lifestyle that you see people who have the diagnosis at age 6 versus people get the diagnosis at age 36.
Casey: It can be, yeah, especially when it comes down to not necessarily food ingredients but like portion sizes, maybe like some of the type 1 diabetes, they kinda know, “All right, this is how much my body tolerates.” But man, it can be really frustrating to, you know, pregnant women with gestational diabetes to figure out like, “Okay, what’s my personal carb tolerance?” It takes a lot of frustrating trial and error for them.
Dr. Nathan: Right. Nili, what was the hardest part for you of changing your diet?
Nili: Definitely going out with friends at birthday parties and school, because at home it’s very easy. My parents were amazing. They always knew the right foods to get.
Dr. Nathan: Well, your mom was, I have no idea. I still don’t understand it.
Nili: Yeah, I’ll give you some credit.
Dr. Nathan: I support the team, all right.
Nili: Yes. So it was much easier at home because A, we knew exactly what being gluten-free entailed, and B, we just had the foods that I wanted to eat whereas if I would go to a birthday party, and not only would they not always have gluten-free options, but if they did, it wasn’t always food that I wanted to eat. And then you sort of feel guilty, not eating it when they get a certain food for you. So sometimes I would bring my own snacks or just eat before, but going out was definitely the hardest.
Dr. Nathan: Casey, do you find that to be the same that a lot of people are sort of able to manage it when they’re, you know, eating at home, but then, when they go elsewhere, it becomes more complicated?
Casey: I would definitely agree. Yeah, there’s just always that potential risk that something’s getting overlooked. You know, even if you ask all the questions, there just might be something that flips in so it can be nerve-wracking.
Dr. Nathan: Yeah. And it’s so interesting what you said, Nili, because it’s true that on the one hand, one of the concerns that going somewhere is that they’re not gonna have food for you. But the other concern is that they are.
Dr. Nathan: It’s like, “Oh, I don’t like that.” But then it’s like, “We have 30 people here, and here’s your food, Nili. This is only for you, so if you don’t eat it, everyone’s gonna know.” I’m curious, how did that evolve over the years? I mean, because obviously you have your friends and you go to certain houses, it’s sort of your friends and your friends, you know, parents learn what was good for you and what you liked and help out. How did that change over the years?
Nili: So I definitely think the first thing is just sort of on a macro level ever known more about celiac and then more foods coming out and more products becoming gluten-free. I just think the transition from when I was 10 to now, the world has evolved like crazy with gluten-free products. That definitely helped just people being more knowledgeable about it. And also, over time when I go to my friends’ house, they would learn what I wanted to eat. And I think the parents became more used to cooking gluten-free and they actually realized that it wasn’t so hard. It was pretty similar to what they were doing anyways. So that definitely helped just them learning, and me sort of being a little bit more vocal about which foods I liked and didn’t like.
Dr. Nathan: All right. Casey, how do you love that my daughter’s throwing out things like on a macro level. Isn’t she smart?
Casey: I know, it’s very impressive.
Dr. Nathan: Casey, what have you noticed in terms of the past, let’s say, you know, five to seven years out there in terms of products and understanding of gluten-free diets? I imagine it’s been like an explosion on your end also.
Casey: Yeah. And that’s why I kind of said before is become the trendy thing because the marketing for it is huge. I mean, it’s great that we’re able to see very clearly. Okay, what’s safe for someone who really does need to avoid gluten? I mean, I feel like there’s… In larger grocery stores, maybe not in Manhattan, there’s specific sections of the store dedicated to like their gluten-free products. So it has for sure exploded, at the same time I think it’s calm with a lot of confusion, or just like it’s made some of those products seem “better” than other things specifically for those people that don’t need to be avoiding gluten. You know, they’re gonna choose a gluten-free pizza crust because they think it’s maybe lower-calorie, or lower carb, or something. And that’s not necessarily true, being gluten-free doesn’t mean something’s carb-free. I think they gets wrapped up in that a lot.
Dr. Nathan: Right, so explain that. What carbs are there that are not gluten, right? So, because being carb-free is a very different diet than being gluten-free. So Nili, what carbs can you eat?
Nili: Potatoes are a very big one, rice, corn. Those are probably the biggest three. And yeah, I totally agree. I think everyone always goes to me and they’re like, “Oh, you’re gluten-free, you must have such a healthy lifestyle.” And I’m like, “I could still eat a chocolate bar, I could still have a big piece of gluten-free cake.” It’s really what you make of it. It’s not only just being gluten-free. It makes you all of a sudden carb-free because it’s very not true.
Dr. Nathan: Right. Bag of potato chips is vegan and gluten-free.
Dr. Nathan: And so what are your staple foods then? Like what do you have like as part of your, you know, top 10 foods that someone on a gluten-free diet is gonna be eating typically?
Nili: So it definitely differs between each person, but for me, I eat a lot of protein, so a lot of chicken meat. And then for my carbs, I eat a lot of rice. Most gluten-free products are made out of rice instead of wheat as like a substitute, so rice is a pretty big staple on a gluten-free diet. But I really just try to eat a lot of protein and vegetables, and I find that it’s very filling and I don’t really find myself so hungry on it at all, actually.
Dr. Nathan: And Casey, how do you advise people who are on a gluten-free diet or need to maintain a gluten-free diet regarding their carbon take? Is it typically rice-based also?
Casey: I mean, rice is definitely the most kind of well-known that we go to, but there are truthfully so many options and a lot of them are maybe from other cultures that you’ve never experienced, things like amaranth, or hominy, or millet, sorghum. I think these are becoming more trendy, and you’re definitely finding them in more like snack food gluten-free items, but to necessarily just cook up a batch of teff, which is a very popular gluten-free grain. And Africa, you know, people aren’t necessarily doing that. But I think that’s part of maybe the fun if we could call it that, of a gluten-free diet is that you can experiment with some of these different grains and make some really delicious dishes because. Still getting variety in your carbohydrate intake is gonna be important to fill those nutrient gaps and make sure you’re getting different vitamins and minerals from these other grains that are gluten-free.
Dr. Nathan: Yeah, is there anything, specifically, that you miss, Nili, that you just remember loving and that you can’t have, and it was a while ago?
Nili: I’m trying to think. Most of the baked goods, like desserts and pastries and whatnot, almost all of them I find could be made gluten-free. So I wouldn’t say I really missed those, but sometimes I find it in a lot of candies, specifically the sour candies, the sugar on top of it is made with wheat. So that’s very hard for me because you don’t really get the same type of substitute for that. So I’d probably say those are the hardest for me now, but pretty much everything, pizza, bagels, cupcakes, all these stuff can be made gluten-free. And now, with all the new products in 2021, I mean, it’s pretty easy to find a good piece of gluten-free pizza.
Dr. Nathan: That’s so interesting. And what you said about the candy is so true. And I wanted to segue into sort of a lot of our listeners who don’t keep a gluten-free diet, don’t realize that some of the things out there that they would never expect to have gluten in. Like the other night, I was eating a Twizzler and you’re like, “There’s gluten in that.” I was like, “There’s gluten in Twizzlers?” I said, “Why’s gluten in Twizzlers, it’s so weird.” But what are the other things, like what would you, same as each of you, maybe like your top, you know, five or few things that are just like randos that have gluten in them that no one would expect? The one I would throw out is typical soy sauce.
Nili: I was about to say that.
Dr. Nathan: Yeah, when the people have, I’m like, “What!”
Nili: That was right on my mind.
Dr. Nathan: Yeah, it’s so crazy like if you get, you know, anything cooked with soy, go to Chinese food. You can’t have that but they make gluten-free soy sauce.
Nili: That’s the biggest one for me, the soy sauce.
Dr. Nathan: Interesting. Casey, what’s one that you talk to people about that’s just sort of totally unexpected, but it has gluten in it.
Casey: So many like soups or bouillon cubes, like gravy sauces, all those types of things, they’re using some kind of usually wrekner.
Dr. Nathan: Nili, did you have any others that come to mind?
Nili: Not that I could think of really, soy sauce was definitely the number one. Or sometimes you’ll find that and lets say, meatballs or other sort of meat people will throw in some breadcrumbs in, and I didn’t realize that until I became gluten-free, but now it’s much more obvious because I know what it is.
Casey: And even like non-food items have gluten in it, just crazy, like your lip gloss or a supplement you’re taking, all those things.
Dr. Nathan: That’s news to me.
Nili: Yeah. I remember when I was first diagnosed, they told me you can’t play with Play-Doh. I’m like, “Huh?” Because it has weed in it, and if you’re playing with it so much with their hands, it’s not good for you either.
Dr. Nathan: Wow. And definitely don’t need the Play-Doh then.
Dr. Nathan: Casey, what are some of the cooking tips you give to people who are keeping gluten-free diets? I know you have so many cooking tips, but what are some of them, some of your favorites?
Casey: Practical cooking tips, just for like, how this looks in your kitchen and your home. I’m sure you guys have this on lockdown is trying to keep things separate. If some people… If you’re not all adopting gluten-free diet, then things that might, you know, have that more cross-contamination like different peanut butter jars. If someone’s gonna dip a knife that is using peanut butter on their gluten-containing bread versus their gluten-free bread, you know, having different jars or different toasters or things like that. You know, nutritionally speaking in terms of, you know, celiac and all of that is affecting how we absorb different nutrients. And so, you know, making sure that you’re having your plant-based iron or the source of vitamin C so we can absorb it really well. Things like that. You can get really into the nitty-gritty to really optimize all the nutrients that we want to absorb.
Dr. Nathan: Nili, what do you think about in our home? How good are we at separating all things? Our house is a war zone. We’ve got allergies to everything, we’ve got FODMAP, we got gluten-free, everyone’s got something. How are we at our home at separating everything?
Nili: Well, in the beginning, you guys were actually very good. We had separate grilled cheesemakers, separate pasta strainers. And now, I don’t even know why we have all this stuff, we don’t use all of them.
Dr. Nathan: It’s complete mayhem. We’re just lucky if we don’t kill your sister with the peanut allergies.
Dr. Nathan: Yeah, I was like hazing you like, “Oh, and the peanut butter on the different bread.” I was like, “Oh my God.” I just, you know, we have peanut butter all over the place and two people are allergic to it. Yeah. But everyone, yeah, all of our children who have lived here, they have thus far lived through childhood. They definitely learned to adapt and they definitely learned to fend for themselves for never knowing. I mean, because, Nili, you cook, I mean, you cook for yourself all the time now, which I think you have that personality that you sort of, you know, take control of things. But also I think that since you had to eat differently, you have to think about how to be creative and learn how to cook for yourself. So what are the things you like to make and how do you substitute certain things potentially that are gluten-free?
Nili: Well, my favorite thing to make is probably stir fry. I think it’s very easy and it’s also very fulfilling. I think part of the reason why I started cooking was because I found it hard to find like, pre-made frozen items, such as pizza bagels or chicken nuggets and they have, but it just takes a little bit more effort to find them. So I couldn’t just find something to put it in the oven and then five minutes later I have it. So I really just had to start cooking for myself. And then for substitutes, when I bake, usually, the best are the all-purpose gluten-free flour. So those typically have a specific ingredient called xantham gum, which oftentimes if you have a gluten-free recipe, they’ll tell you to put it in separately, but it could be a little bit hard to find. So the all-purpose flowers have it included, and you could pretty much just substitute it for regular flour and it almost tastes the same
Dr. Nathan: Yeah, that’s so interesting. And I definitely want to give a shout out to your mom, to my wife, Tamiko, because, you know, because when you had this diagnosis at first, I mean, listen, we had no experience with this. I mean, I went to medical school so I know what it is and I knew what it was, but, okay, like that’s completely unhelpful. And in terms of practical… So you had a great attitude about it as a 10-year old, but she also… She’s like, “All right, we’re gonna do this.” And then she just went, you know, spoke to a few friends who she knew when, you know, went out a few websites and got the books and started learning and the same process. So I think part of the reason that you’re saying, “Oh, you can have cupcakes and cake.” And this is because she makes them.
Nili: A hundred percent.
Dr. Nathan: And they’re good. And so we have gluten-free desserts like all the time because she makes them herself. And now all of our friends who are gluten-free want to come over and eat with you and have your desserts and have your food. And I think that that’s really a huge part of it. And all the credit is hers. You would have starved to death if I were the only person caring for you, it would not have been pleasant.
Nili: No, we always say that the secret ingredient to bacon gluten-free is everything needs extra sugar and cinnamon on the top. That’s what makes it taste really good.
Dr. Nathan: The dietician is definitely agreeing with that.
Casey: I agree. Yes.
Dr. Nathan: Casey, how much do you cook gluten-free yourself? I mean, I know you don’t keep a gluten-free diet, but you ever make things specifically to be gluten-free or just maybe you’ll use some of the items because you have a wide variety yourself?
Casey: Yeah. I don’t think on purpose, but definitely, there are plenty of meals where I’m not having a gluten-containing carb, so it’ll be rice or a lot of beans as my starchy protein. I’m a big fan of oats like the Bob’s Red Mill oats, which are certified gluten-free. So it accidentally happens quite often actually.
Dr. Nathan: And do you find that your, you know, your clients, your patients who are keeping gluten-free diets that they’re able to do this themselves that most of them just sort of learn how to cook for themselves? Are they usually, you know, buying products and trying to work it that way?
Casey: Fifty-fifty. It depends I think I’m kind of what life stage they’re at. You know, if their job is really demanding or they have lots of other kids or something, and it’s just easier for them to lean on more of those gluten-free products, then I would say, you know, those are really helpful for them and it’s maybe making up 50% of their diets sometimes. But again, some people err on that more side of caution or they just notice that they feel better when they’re having less of those processed foods. So they are trying to do most of the cooking at home and cooking these like whole food gluten-free resources.
Dr. Nathan: Yeah, Nili, have you found others who are gluten-free that you’ve like bonded with over this either your age or people you never would have been sort of connected with otherwise?
Nili: Oh, totally. I mean, I was probably one of the first ones out of all my friends to find out that I was gluten-free. But then over the years… So my friends started telling me like, “Oh, by the way, I’m gluten intolerant.” Now I just found out I had celiac and whatnot. And I found it very bonding. You know, we would go to the nurse’s office together to warm up our special gluten-free food, whereas everyone else would go right away to the lunchroom. And people sort of would ask me for advice and I loved helping people through their transition. I found it very… It was actually quite fun because I also got to learn about new recipes through them. So it was sort of we exchanged different recipes and that was super enlightening, but I think it’s also so cool when you meet someone you’ve never met before. And then all of a sudden, they drop the bomb that they’re gluten-free and I’m like, “Wow, me too.” And then all of a sudden we have this crazy connection between us two.
Dr. Nathan: That is pretty cool. Is there anyone who is totally out of Left Field that you’ve, you know, connected with because that meaning, so maybe not your age or someone, you know, online or anything like that?
Nili: Probably not online, but definitely in school. People who are not, yeah, not in my grade, I’ve never met before. And then someone’s like, “Oh, by the way, this person is gluten-free, do you mind talking to them to help them out?” And then there, that’s a new friendship.
Dr. Nathan: That’s pretty cool. What is the most difficult part about it logistically right now for you? because you said you sort of at home, you figured it out, you know, for going to friend’s house is sort of figured out. What is still challenging for you?
Nili: Well, I think something that’s not challenging, but it sort of makes me laugh a little bit is that people think that the word celiac is an adjective. So they’ll be like, “Oh, you’re celiac?” I’m like, “No, that’s not how it works, it’s not like you’re lactose intolerant. You’re not celiac, you have celiac.” So that’s just something that sort of kept me laughing for the past few years. But the most challenging now that I’ve worked out, going to friends’ houses and even restaurants is just, oh, traveling would probably be the hardest one because you don’t have the same abilities to cook and you’re sort of just on the road, and I find that usually, I’ll prepare as much food as I can, I guess, but protein bars are very helpful. So my favorite are NuGo bars, which actually only became gluten-free a few years ago. So that was one of the game-changing products. And then gluten-free pretzels, I love to snack on on trips, but traveling can be hard if you don’t prepare yourself for it.
Dr. Nathan: Casey, have you found the same thing with the people you work with in terms of what remains challenging for them?
Casey: Yeah, I think it is those experiences outside of the home, the traveling, or especially if you’re going abroad, and it’s different culture, you don’t even understand what the menu is saying. You don’t even speak the language to ask. So I could see where that would be a really big worry and obstacle for people continuously, yeah.
Dr. Nathan: Yeah, Nili, this is the time we got to tell your travel story with the gluten-free food when you’re going from Grand Rapids, Michigan back home, when you’re stuck on the airplane and with limited amount of food.
Nili: It’s nothing to do with being gluten-free.
Dr. Nathan: At the time you were either 14 or 15 or…
Dr. Nathan: Well, yeah. Okay fine…
Nili: Almost 15.
Dr. Nathan: All right. So I guess we’re gonna say on the air that you were 14, and we told the airlines you were 15, and you were flying alone. So to go from Grand Rapids, Michigan, after visiting your grandparent’s home and the flight was getting diverted and delayed and you’re like, “I only have a limited amount of NuGo bars and pretzels that I can eat.” And yeah, I mean, it’s a situation like that. You can’t just like walk around the airport and pick something up and get something to eat.
Nili: Yeah, I remember you guys told like, “Just break your gluten-free diet.” Like, “Go eat the real pretzels that they’re handing out.” I’m like, “No, no, no, no, no, no. I’m not doing that.”
Dr. Nathan: Yeah, I don’t know if that made us good parents or bad parents, but yeah. It’s one of the situations where we’re like, “Listen, you can’t starve, so eat whatever you can.” Ultimately, the story ended with you landing in Allentown, Pennsylvania. And how’d you get home from Allentown to New Jersey at the age of 14?
Nili: I had to Uber.
Dr. Nathan: Casey, how about that parenting, right?
Casey: She had to figure it out sometime, and it’s called independence.
Dr. Nathan: Yeah.
Nili: You guys weren’t even… I couldn’t even speak to you guys, you’re on your own flight.
Dr. Nathan: Yeah, we were on a plane from… We were coming home from Jamaica. Nili was home. There was an adult present in some capacity, but yeah, it was like, that was it. And that was the solution we came up with. But it worked, you got home, she’s here. Look at this, survive childhood in the Fox household. And it’s not easy to do. Nili, are you concerned about next year abroad?
Nili: Actually, no. I find the program that I’m going to, I think they’re pretty familiar with gluten-free diets because I’ve spoken to some people who are there right now and I, actually, I’m living in an apartment. So I have the ability to cook my own food, which is very helpful. So I don’t have to rely on what the program gives me. And again, I think going out to restaurants or when I spend the weekend at someone’s house, I’ll just have to sort of prepare myself and know what’s coming, but I’ve been doing that for a while now. So I’m pretty used to it. I don’t think it will be much different from what it’s like now.
Dr. Nathan: Yeah. And Israel is a pretty good country with gluten-free, they’re gluten-free aware. I don’t know what you would call it, but they, you know, they label their products and they have a lot of products for it. And so I think that there are things to buy. Casey, are there places that are like, not on board with gluten-free that you know about where people go and there’s just like, you can’t find anything to eat and nothing’s labeled, I don’t, you know, I don’t travel enough to know this.
Casey: I mean, I think there’s the one country that pops, not that they’re anti or not supportive at all, but I think they kind of, you know, it’s funny to them almost it’s like Italy, everything is semolina and, you know, wheat and everything, they can do beautiful gluten-free pastas. It’s kind of like when I lived in Mexico and I had a roommate who was vegetarian and my host mom just said, you know, kind of like that big factory flooding. “Oh, you don’t, you don’t eat meat, here’s some, here’s some pork. Oh, you don’t eat pasta. Here’s some gluten-filled pasta.” So that might be a tough country to go to, possibly a generalization. I think they wouldn’t handle it very well. If you spoke up, you could find things.
Dr. Nathan: Got it. And Casey, what are the concerns you have for people, you know, you said nutritionally that they may be missing?. You know, what kind of vitamins or minerals might someone be lacking in a gluten-free diet that they have to consciously seek or supplement potentially?
Casey: The big ones to watch out for, and it kind of depends on how far along you are into your journey on a gluten-free diet. Obviously, someone who still has a lot of intestinal damage, you know, right after they get the diagnosis is gonna maybe need to supplement a bit more than someone who has been gluten-free and restored their gut lining over the years. But the big ones that pop out because it’s affecting that part of your digestion would be things like iron fully B12, calcium and vitamin D get impacted a little bit too. And we just want to keep establishing a nice healthy gut to making sure we have lots of antioxidant nutrients, vitamin E is good for that, vitamin K. So it’s a host of things, but we can get a lot of them through gluten-free foods, plenty of fruits and vegetables, and meats, and dairy products. So not everyone needs to supplement with a pill.
Dr. Nathan: Right. And do you normally recommend people just have that variation in their food or do like check levels on them? Or how do you sort of, you know, establish that they are getting those nutrients that are so important?
Casey: Yeah, that’s where kind of my role as a dietician and taking a really detailed dietary call where I’m trying to assess in a day, in a week, typically what’s your intake look like of certain foods. And from there, you know, I have a pretty good understanding of if they’re missing any major gaps or falling short on some things which I might recommend an extra serving or two of a dairy product, or of some seafood to help with that inflammation. So blood tests aren’t always necessary, but if we’re kind of stumped or they’re having other symptoms, then definitely getting some blood tests for certain things can be insightful.
Dr. Nathan: I want to segue away from that into, let’s say someone comes to you and they just got diagnosed with celiac and they have to go on a gluten-free diets and there’s just starting the process. So, Casey, they come to you, how would you number one, sort of evaluate them and number two advise initially. And then, Nili, I ask you the same thing sort of more practically, they’re coming to you like, “Hey,” like, “What do I do? You know all about this” So Casey, how would you start with that person?
Casey: Yeah, I think it’s gonna overlap maybe a little bit with what Nili tells you because at the end of the day, right, I’m not here to overwhelm people and, you know, necessarily get down to the nitty-gritty of these vitamins and minerals and eating X many milligrams of things, you know, that will just overwhelm people. So I like to, again, put it in terms of food. So as I say with my, you know, patients with diabetes, same thing, we’re going to zoom out, look at your whole plate. We’re gonna first and foremost make sure we are eliminating these sources of gluten and there’s going to be ongoing education about that. So that first initial session, you know, is the wheat, barley, and rye kind of providing them with some resources and lists for what are other gluten-containing grains and which are the safe ones. So we want to make sure they’re very clear on that, but then we also want to assess their diet and reassure them that they can still feel full and satisfied. They can still enjoy their food. So we’ll talk about what are those great protein and fat sources to include all the fruits and vegetables that are gonna provide those vitamins and minerals and just continuing to encourage variety and flavor while still doing it in a very safe way.
Dr. Nathan: Excellent. Nili, how about you, if someone comes to you, like you said, you know, high school students who, you know, their mom said, “Hey, talk to Nili. She knows what’s going on with the gluten-free.” How would you advise them?
Nili: Usually the best way that I advise someone is just by getting straight to it and giving them the good brands and I’ll share some of my favorite recipes with them. So for me, my favorite gluten-free bread is Udi’s bread, and my favorite gluten-free pretzels are Snyder’s pretzels. And actually people sometimes even like the gluten-free pretzels better than the regular ones. And I’ll go to someone’s house and they’ll have the gluten-free pretzels. I’m like, “Oh, you’re gluten-free?” Like, “No, I just like them better.” Again, the all-purpose gluten-free flour.
Dr. Nathan: Do you find they’re asking you sometimes the same practical things. Like, “What do you do when you go here? What do you do when you go here?” Is that something that people have a lot of also when they ask you?
Nili: So yeah, going out, they also will tend to ask me, what do you do with cross-contamination and how do you sort of tell the restaurant and people’s houses and how you deal with that? So I usually tell them that most people are very familiar with being gluten-free now. And if you just tell them, “Hey, by the way, I’m gluten-free, do you mind not cooking this on the same pen as you’re cooking the other breaded stuff?” And then usually people are totally cool with that. And they’ll totally go along with that and much easier than we think it is.
Dr. Nathan: Right. And do you find that for the people that you’ve run into who have not been doing this for a long time, do they seem overwhelmed and look to you sort of to reassure them that like “It’s gonna be okay” or are they already past that point by the time you guys are speaking?
Nili: I think before they actually start, let’s say doing the gluten-free shopping and cooking, they’re very nervous. And they think it’s going to be very hard and very scary, but then once they actually start, they used to tell like, “Hey, this isn’t that bad at all. I could totally do this.”
Dr. Nathan: Yeah. And I think that’s a really important part of this, that it sounds a lot worse than it is. Like there is a lot of busy work and it is detail-oriented and, yeah, it could be annoying in that sense, but ultimately, it’s totally doable.
Nili: A lot of foods that people cook anyways tend to be gluten-free, that’s more in the meat realm as opposed to dairy, but, you know, you go to someone’s house and they’ll have chicken and chicken itself is just gluten-free. So usually it’s really not a problem.
Dr. Nili: What kind of resources are available to people like, what’s a really, you know, either a good website or good book or good YouTube video? Are there any ones in particular that you know about?
Nili: So I don’t really join, let’s say, a Facebook group or group chat, oftentimes I’ll just go to Google and search, let’s say gluten-free pizza recipe. And then there are infinite amount of pages that just pop up with all the different recipes. And then, you know, from one likely to another recipe to a different food and there’s so many options online.
Dr. Nathan: Right. I guess that makes a lot of sense. And there are gluten-free cookbooks out there and we have all of them. So there’s, you know, for kids, for adults, and there’s a ton of really good gluten-free recipes. But as you said so much of it is like that the trick of the trade, like, which is the good gluten-free flour to use, which is the good, you know, sauce to use because it’s not… You can look at a recipe and it says, do one cup of gluten-free flour, but the one that you use is gonna make or break the recipe.
Nili: Yeah, that’s definitely, probably one of the hardest parts about adjusting at home is really just again, trial and error, seeing what you like because what I like is gonna be much different from what another person likes. So you just have to experiment with it.
Dr. Nathan: Wow. Casey, you have the same thoughts on that?
Casey: Yeah, exactly. Similar to blood sugars, everyone is so individualized and their tastes and how their body’s gonna respond. So you gotta find what works for you.
Dr. Nathan: This was great. I’m really happy to have both of your perspectives on this. Celiac is uncommon, but 2% is a lot of people, 2% of, you know, humans, there’s a lot of humans out there. So 2% of them is a lot. And for the people who do keep a gluten-free diet who do not have the diagnosis of celiac, I think as Casey said, it’s important to be sure that that’s the right diet for you, that it’s actually healthier as opposed to just, you know, thought to be healthier. But if someone keeps a gluten-free diet legitimately and, you know, and they need to, or they feel better on it, it’s the same challenges. And I think there’s so much information out there. It is so much more understood now and well-known and prevalent that it just, like we said before, it’s totally doable and people shouldn’t, you know, be distraught about, you know, either getting this diagnosis or finding out that that’s kind of diet they have to keep.
Casey: Totally agree. I think Nili’s positive attitude to all of the listeners should be, you know, that ray of sunshine and hope that it’s so doable even as a young person managing it. So kudos.
Nili: Thank you.
Dr. Nathan: Love it, awesome. Guys thank you so much for coming on. Casey, thanks for joining remotely. Nili, thank you for coming so I can see you into the podcast with you. You are in fact awesome. I’m glad you came on.
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