Navigating Celiac Disease, with Jessica Lebovits

Episode Transcript

Ariel: Hello, and welcome back to another episode of the “Colon Health” podcast. I’m your host Ariel Bridges, and today I have Jessica Lebovits with us today. Jessica, how’s it going?

Jessica: It’s going great. I’m excited to be here. Thank you for having me.

Ariel: Thank you so much for being here. I’m super excited to chat with you. Just to get things going, can you please share exactly what it is that you do with our audience?

Jessica: Definitely. I am a registered dietitian. I work directly with patients, but I also work in the research space. I specialize in celiac disease and other gluten-related disorders, IBS, SIBO, GERD, gastroparesis, lactose or fructose intolerances, among others. And I would say I’m a total foodie, I won’t accept that a gluten-free diet just means bland underwhelming food. So I really try to help my patients enjoy food to the fullest, despite any dietary restrictions they might have.

Ariel: Yes. And if you want some good-looking food, don’t go in here hungry because your mouth will already just be watering, there’s so many yummy-looking things on her page, I’ll link it down below. But I’m super excited to chat with you because I myself follow a gluten-free diet after being…testing negative for celiac, but finding out that I have a gene that makes it above likely that I’ll develop it in the future, and just having really terrible celiac-like reactions when I do eat gluten. So I have millions of questions for you, but I would love to hear more about your personal journey that brought you to this space.

Jessica: Awesome. I’m happy to answer any questions that you have, but I think a lot of us have a similar journey with some variations here and there. I’d say my journey began back in college. I ended up going to Cornell as a nutrition major, not because I always knew I wanted to be a dietitian, just because when I thought about my major, I realized that nutrition combined my love for science, food, and counseling, so it seemed like the perfect match. And then through my major, I was led on the path to becoming a registered dietitian, but it really wasn’t until my senior year of college that I received my diagnosis of celiac disease.

I had been complaining of acid reflux but didn’t really think much of it given my lifestyle in college. And finally not until then I went to a gastroenterologist for the first time, and they eventually told me that I had celiac disease, which I didn’t really believe. I laughed and told the doctor that’s not possible since my diet was primarily bread, pasta, and pretzels, despite my nutrition major. But here we are about eight years later, and I not only had celiac disease myself, but I have made it my career. So it’s been a journey, but my own diagnosis really sparked my interest in celiac disease and other GI conditions. So I started seeing more and more clients with these conditions, and it wasn’t too long before I knew it was time to leave the hospital settings I had been in and really focus on GI nutrition full-time.

Ariel: And can you just quickly explain for our audience what it means to be a registered dietitian versus maybe…we speak with nutritionists on the podcast, just so they know the difference or the similarities as well between the two different people that they could see?

Jessica: Sure. We get this question all the time. Part of it is that they’re equivalent. I would also call myself a nutritionist, but I’m also a registered dietitian. Anyone could call themselves a nutritionist. If you took a nutrition class, technically you could say you’re a nutritionist. But to say that you’re a registered dietitian, you have to go through the schooling. So basically, there’s certain classes that you take in college, or in a master’s program. You then apply for dietetic internships, and you finish out that program. And after that, you take a registered dietitian examination, and you complete that, and then you have your degree as an RD. So you’ll see people with the letters after their name as RD. And that’ll signify that they’ve gone through this schooling and training that’s really validated to prove their nutrition knowledge compared to maybe somebody else who may just call themselves a nutritionist, but you don’t really know their training.

Ariel: That is very helpful. And while we’re on the path of defining things, can you also share what celiac disease is, and how it can affect people?

Jessica: Sure. Celiac disease is a genetic autoimmune disease in which eating gluten triggers inflammation of the small intestine, and this inflammation leads to damage of that small intestine. So, we know gluten is a protein found in wheat, barley, and rye, and it provides structure and elasticity to food. You might think of gluten as most commonly in, like, bread, pastas, crackers, cookies, and things like that. And celiac disease is pretty unique because it can present in so many different ways. There’s a number of different manifestations ranging between gastrointestinal, such as nausea and diarrhea, extraintestinal, such as arthritis and infertility, and also neurologic, like peripheral neuropathy and headaches. And some outcomes are related to that poor nutrient absorption, such as osteoporosis and anemia.

Ariel: Yes. I have a couple of friends who’ve also been diagnosed with celiac disease and just talking to different people about experiences from people they know, it really has run the gamut of different experiences that people have, which is something that is very fascinating to me. When it comes to what people experience, it seems like a lot of what you mentioned, ultimately does come down to some sort of inflammation in the body as is with all autoimmune conditions, but how do you get nutrients? We talked about malabsorption, if you have celiac disease, how do you get all the nutrients you need with celiac disease, and especially after eliminating foods that have gluten in your diet?

Jessica: Yeah. So, celiac disease can present so differently as we just mentioned, but everyone is really experiencing that damage in the intestine. But following a gluten-free diet should allow for those intestines to heal. But, you know, initially, at diagnosis, you may be deficient in certain nutrients because of that lack of absorption. So we definitely review what foods have those specific nutrients in them, and how to optimize their intake. So we might run some labs to see, are these levels okay, or are you deficient right off the bat? And moving further along, obviously, you already have this restriction on your diet, and we don’t believe the gluten-free diet is just a healthy diet on its own. Many wheat products are fortified with certain nutrients that gluten-free products are not. So we really need to work together to make sure that patients are finding other ways to get all of the nutrients that they need.

So some of the things I focus on are really promoting gluten-free whole grains. So a lot of the nutrients, for example, B vitamins, iron, fiber, that you may have been getting from wheat products, you now need to find another source for those. So I really try to promote different gluten-free whole grains, like quinoa, buckwheat, millet. And some of these may sound a little more foreign, but you can also buy breads or cereals, pastas, flours that are made from these grains if, you know, you’re a little intimidated at first. But then eventually, incorporating them just as if maybe they were rice or pasta can be very simple as well.

Another thing that I really focus on is variety. Taking out a whole section of your diet, removing gluten. You really wanna make sure that you’re burying the diet as much as possible so that you’re hitting all of the nutrients that you need, and you’re not falling short of different things. So to do that, we wanna make sure you’re getting different fruits, vegetables, meats, if you’re doing that dairy if you’re doing that, as I mentioned, the gluten-free whole grains.

So I really encourage my patients to aim for, if they can, one new food or one new recipe per week, so that they’re really increasing their variety and hitting on as many nutrients as they possibly can. And lastly, oftentimes our patients have multiple restrictions. So they may be gluten-free but also have lactose intolerance. And therefore, we need to be strategic about how they can get sufficient nutrients when there’s more than one restriction that they’re working with.

Ariel: I think the first thought that people have is they feel so limited. But you just shared, there are so many different possibilities, and I feel like there’re more every day now, where you can have great nutritional options that are still very delicious, that are gluten-free.

Jessica: Absolutely. A lot of times, a very overwhelmed patient will come to me and say, “What am I supposed to eat? All foods have gluten in them.” And I’ll calmly explain that, even though it feels like all foods have gluten in them, once you start learning about the gluten-free diet and all the things you can eat, you eventually realize there’s endless gluten-free options. You know, if you’re aiming for naturally gluten-free foods, as I mentioned, the fruits, vegetables, meat, fish, eggs, nuts, seeds, dairy, legumes, gluten-free whole grains, you’re really left with a lot of different options, and now that will really help you to achieve a varied healthy gluten-free diet.

Ariel: Yes. I remember at the beginning it took me a while because there’s those sneaky things like soy sauce or some salad dressings, and I’m like, “Why is there gluten in here?” But then I’m like, “Oh, tamari is amazing.” There are plenty of dressings that don’t have gluten in them, you just have to be a little bit more diligent about checking ingredients. But yeah, you kinda get the hang of it and are like, “Wow, I actually can eat a lot of what I was eating before.”

Jessica: Yeah. I explain to patients that this is really a learning curve. You first start out figuring out what gluten is, what celiac disease is, or what other gluten-related disorder you have. And then you move beyond that and you start figuring out how to prepare foods, what to look for, what might be some of those sneaky sources of gluten, and with time it becomes a lot easier. You know what to order at restaurants, you know what to look for, you know what to ask for. And so, you know, the whole thing I really think of as a learning curve and with time, I really find that many people think of it almost as second nature, but in the beginning, it can be such a huge change for people that they are just so overwhelmed to start.

Ariel: I absolutely can relate, and I agree with you 100%. Along those lines, I would love for you to share some of the biggest misconceptions you hear about gluten-free diets. And I have two things that I want to start off that I’m hoping that you can address that are so…that stand out the most to me. The first is that I’ve heard so many people say, “Oh, I’m eating gluten-free to lose weight.” And I’m like, “Oh, my goodness,” that’s the first one. And the second one is that there’s this misconception where people feel like unless you have celiac disease, that a gluten-free diet or a poor reaction to gluten, isn’t legitimate in some sort of way. So I’d love for you to speak to those two things, and then anything else that you’d like to throw in there as well?

Jessica: Yeah. There are so many misconceptions. So let’s start with the first one. So, the weight loss. Anytime you take out some food from your diet, you often will have weight loss. So you go on a Krispy Kreme diet, you’re gonna end up with weight loss because there’s not that variety in your diet. And oftentimes you eat less of those foods when there’s not as much variety there. So, could you lose weight on a gluten-free diet? Sure. Is it going to be sustainable, healthy, all of that? Maybe not, depending on what your reasons for doing it and whether or not you’re working with a registered dietitian.

Now, a lot of times people confuse a gluten-free diet with maybe a grain-free diet. When people go into this for weight-loss reasons, you might find that they’re not eating bread, or pasta, or something like that, but maybe they’re still doing the soy sauce, or dressings, or sauces, or things that have gluten on it. So they’re not really essentially gluten-free, they might just be more grain-free. So there can be some confusion with that of what’s actually going on.

In terms of the second one, one of the most important things is that you’re working with a trained or specialized gastroenterologist to have the proper testing for celiac disease and have it rolled out. We do know that the testing won’t be accurate if you’re already on a gluten-free diet, but as you mentioned before, things like genes and other tests can be done to figure out what might be going on and what might be the appropriate diagnosis. So if you’ve been ruled out for celiac disease, then it is possible that you have something like a non-celiac gluten sensitivity, but you would wanna go through a full workup to make sure that your gastroenterologist isn’t finding some other form of diagnosis that would have a different treatment, for example, SIBO, IBS, IBD, something like that.

And as long as those things are ruled down and it seems very clear that it’s some sort of gluten sensitivity, it’s not some sort of IgE allergy reaction, then we can tweak the gluten sensitivity as best we can. There isn’t as much research and as much known about the pathogenesis or the treatment for gluten sensitivity as there is celiac disease, but at the same time, we can still figure out symptoms, we can still get you to feeling better and optimizing your gluten-free diet as much as possible.

Ariel: That was so helpful, thank you. And something that I wanna know is how can people work with you if we’ve listeners that are similar to me, or they’re like, “Wow, this is so helpful, and I really need someone to help me sort through my recent celiac diagnosis,” or “I think I may have a non-celiac gluten sensitivity,” how can they find you, and what capacity can they work with you?

Jessica: Absolutely. So, as I mentioned, I do see patients one-on-one. I see patients at the Celiac Disease Center at Columbia University, as well as through my own nutrition private practice, Jessica Nutrition. Or you can contact me at [email protected] You can also find me on Instagram, Twitter, and TikTok, as gfree_rd, where as you mentioned, I share tasty gluten-free recipes, restaurants, travel, gluten-free products, updates and research, and upcoming events related to nutrition, celiac disease, and the gluten-free diet.

Ariel: Do you have any parting thoughts for our listeners?

Jessica: For me, I really focus on balancing compliance to the gluten-free diet with quality of life. It isn’t so hard to just tell people what has gluten in it, but being able to live normally, enjoy food, enjoy life, and also being able to live with your dietary restriction is so important to me. I also think recognizing that every person with celiac disease or a gluten sensitivity is different, and just because something works for one person doesn’t mean that that’s exactly right for you.

And that’s why I think counseling is so important because we really work together to figure out where you’re at with your diet, with your disease, or your condition, we figure out what your tolerances, your healing, your life experiences. And our advice to each patient is really tailored to what they’re going through, and how the healing is progressing, and what’s really right for them.

Ariel: I love that. On the podcast, I always make sure to emphasize that everybody and every body is different and it’s so important to find what works for you and your particular situation because it really does vary so, so much. My final question, based off of also what you just said is, do you have a food that you feel like is better gluten-free than just regular?

Jessica: I do think the pretzels, you know, maybe not the healthiest…

Ariel: Oh my God…

Jessica: …but all my friends who are not gluten-free, well, love the gluten-free pretzels, are always so excited about them, and they are delicious. I will also say, sometimes crackers, like the Simple Mills Almond Flour Crackers are just absolutely delicious. And my last one that I would say is not…doesn’t have a gluten counterpart, but I’m a big quinoa fan. So I feel like when people go gluten-free, they’re doing a little more quinoa than they might be doing other grains, and I think quinoa works its way into a lot of my dishes if you do look at my Instagram and recipes. So I do think being gluten-free has enabled me to do a lot more quinoa.

Ariel: Quinoa’s really underrated I feel. There’s so many different things that you can do with it, and we love that extra protein, such a great option. But I cannot tell you how validated I feel that the first thing you said was gluten-free pretzels, because that’s the thing that I try to tell everybody. And my fiancé is not gluten-free, so he will try some of my things from time to time. And so he lets me know that my feelings are valid because I haven’t eaten regular things in so long I forget what they’re like, but he’s like, “Yes, gluten-free pretzels,” and then if we’re being extra decadent, gluten-free brownies, he’s like, “These are fudgy and so much better than regular brownies.” And then those Simple Mills Almond Crackers are also so good that you mentioned, so tasty. So I love that.

Jessica: Exactly. And this is where the food industry is catching up with certain things. So if they could just get bread to be as good as those gluten-free pretzels, we’re almost there. I think a lot of the breads are pretty good, but the pretzels are really standing out among all the other products.

Ariel: One hundred percent. And it’s been incredible to see how it’s changed over the years, and the different products that they’re making, and how it’s improved in taste, in all of the texture, all of those sorts of things.

Jessica: Absolutely. And that makes my job a lot easier because if patients are able to find these things in stores, they’re able to enjoy it rather than telling them to go…you know, years ago, we were telling them to go find things that tasted like cardboard, that weren’t really available. So now that these things are on the shelves and there’re options, there’s almost nothing that you can’t find a gluten-free version of at this point, but I will say it’s not as easy as just finding the gluten version of things in the supermarket.

Ariel: Maybe one day, that’s my dream. Or going to a restaurant and being like, “Oh my gosh, I have pages of things to pick from and not a small little section.”

Jessica: Right. I am located in New York City, where we are very lucky. We do have a few restaurants who are doing such a great job with that and there are these gluten-free options, but I hope that it’s more widespread across the country and the world, so that there’s going to be more options and people in other areas are able to feel more comfortable with their diet.

Ariel: Yes. I cannot wait. This was so amazing and so much fun. I learned so much. Thank you so much again for being here.

Jessica: Of course. Thank you so much for having me. I had the best time.

Ariel: And as I always say on the podcast, we all have colons. So ask your questions, do your research, and have a conversation. All right, we’ll see you next time on the “Colon Health” podcast. Bye.