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Lupus is a truly a tricky diagnosis. The symptoms range from fatigue to the butterfly rash to joint pain! It can be so hard to pin down due to many other ailments having the same symptoms.
Today's guest, Tanya Freirich, has worked as a dietitian for more than a decade after obtaining both my Master's and Bachelor's degrees in Clinical Nutrition from New York University. I started my career at the world-renowned New York Presbyterian Hospital, then honed my skills in private practice and as an outpatient dietitian. After years of counseling on a variety of medical conditions, I've focused my nutrition expertise, scientific research and personal experience with Lupus and establish The Lupus Dietitian practice. I help people with Lupus reduce Lupus flares and symptoms through a holistic approach to diet and lifestyle changes.
Join us as Tanya dishes out how you can help yourself while dealing with your autoimmunity, specifically as it relates to lupus.
Do you have lupus and have some tricks or products you have found that help? Share them with me in the comments!
Or, listen on your favorite app: iTunes (Apple Podcasts) | Spotify | Stitcher | TuneIn | Subscribe on Android
In this episode:
- Signs + symptoms of lupus
- Tanya's personal story from “fuzzy” diagnosis to being flare-free
- The eyebrow-raising stat of how many people really have lupus
- Why getting a proper lupus diagnosis is so challenging
- How diet + external factors play a huge role in flares and calming the inflammation
Quotes
“When I was having my lupus flares, I had no idea if I was going to wake up. Honestly, to just get out of my bed was excruciating. He's my husband now, he's a good one, I kept him, but he helped me get dressed. He helped me get my breakfast and turn the doorknobs to get out of the apartment. It was really tough.” [30:14]
“Lupus can lead to headaches, low-grade fevers, photosensitivity. So if you notice, “Oh wow, I spent the day in the sun. And for days after, weeks after, I really don't feel well,” that could be a sign of lupus.” [13:00]
Links
Find Tanya online
Get your FREE Lupus Dietitian Guide to Skin Care
Follow Tanya as The Lupus Dietician on Instagram | Facebook | Youtube
263: Lupus 101 (And A Personal Journey) w/ Tanya Freirich, RD FULL TRANSCRIPT
Jennifer Fugo: Thank you so much for being here, Tanya. I'm really excited to have you.
Tanya Freirich: Oh, thank you so much for having me. I'm so excited to be on your show.
Jennifer: Well, I'm actually really excited because as you know, this is the first ever episode on lupus, which is a big deal. And actually, I'm really sad that we're 200-ish episodes in and I never even touched on this topic ever. For everyone listening, the reason that this conversation is happening today is because listeners like you wrote in to me and said, “Hey, do you have any content on lupus?” And I realized I did not. So, I actually do pay attention to the messages you guys send and it was really helpful. And so, I'm excited to have Tanya here. We found her on Instagram actually and she has her own personal experience with lupus, as well as working with people who struggle with lupus. Tanya, would you mind taking a few moments to share your story about lupus with the audience? Because I know that they love to hear personal journeys because obviously, you really get it.
Tanya: Yes, definitely, I'm happy to share. My name is Tanya Freirich. I am on all media as The Lupus Dietician. How this came about is I actually was diagnosed with my first autoimmune disease when I was only 12 years old. So I have a very long history of unfortunately trying to navigate the medical system medications, trying to figure out do I feel bad because of this or because of this. And throughout my teens and my twenties, I just kept getting another autoimmune diagnosis and another autoimmune diagnosis. And actually, my undergrad and my Master's were in nutrition. So, I had already been practicing as a registered dietician for quite a while.
I got the diagnosis of lupus eight years ago and I said, “You know what? Enough is enough. Clearly, something that I'm doing or something that's going on is just causing all of this autoimmunity and I'm tired of it.” I know that nutrition can make a huge difference. I was eating, quote, unquote, “what healthy is,” for a dietician. So, just generally healthy. And I said, “You know what? I know that there's a lot of information out there specifically on autoimmune disease. I'm just going to do all of the research that I can, really become an expert in this area, and I'll try it on myself and see what sticks.” And so, I tried a lot of things and I've already counseled many people with autoimmune diseases even before I was diagnosed with lupus.
So within, let's say about a year and a half, I actually found the right combination of things for myself and I have been flare-free now for more than six years. So no symptoms, really feeling good. So, I know the diet makes a huge difference of course in our body. Your food breaks down and then it becomes your cells. I know functionally and with all my education how much diet can play a part in all sorts of disease states, but I can also speak from experience. So, my virtual practice is with all lupus patients and autoimmune disease patients or clients. They feel heard because I have been there. I have walked in their shoes. I have been to a million doctors. I have been disregarded. I have taken a lot of medications. I've known how joint and muscle pain and skin rashes look and feel on myself. So people really find that, that resonates with them because I can really viscerally empathize.
Jennifer: Yeah. It makes such a big deal when someone knows when you're like, “I understand.” And you really mean it. You do actually know what it's like. I actually wanted to ask you, did you have a myriad of weird symptoms that were going on that led up to the diagnosis? Was there originally misdiagnoses? Like you said, you felt like you had been blown off. Were the symptoms blown off? How did you actually get to that moment where somebody, I guess, ran the right tests and read things in such a way that you finally got this clarity about what was going on?
Tanya: Yeah, great question. Starting way back in my teens, I had already been put on immunosuppressant. So everything, I would say, muddied the waters from that point on because my immune system was tampered down. So they were little symptoms, little flares, little things that would pop up. My big ‘aha' moment for the doctors and myself, of like, “Hey, whoa, this is something new and different and we have to deal with this,” was when I was being transferred off of one immunosuppressant to a different one. And in that transition, I had a huge flare. So, the joint, the muscle pain, the butterfly rash, which I had never had up until that point. Fatigue hit me so hard. I couldn't move in the morning. It was just an avalanche all at once because my immune system was finally not suppressed, and so it said, “Hello, I'm going to do a lot of stuff right now.”
Jennifer: Not what you want to happen, no.
Tanya: No.
Jennifer: Oh, goodness.
Tanya: No. You want it quietly running in the background.
Jennifer: And so, when you got that diagnosis, what was the future that they shared with you? What to expect given your current situation? Did you feel like it was hopeful, or were they like, “Sorry, life is going to stink from here on out?” We have medications. What was it like to be in that moment and what did it feel like to hear whatever it was that they told you?
Tanya: Very good question. I feel like, and many of my clients tell me this as well, that at the beginning, it's very fuzzy and doctors actually don't tell you much. That was my experience as well. I had a hepatologist, so liver doctor, that said, “Uh oh, I don't like these labs. I'm sending to a rheumatologist.” And that rheumatologist actually said, “Maybe, it's lupus.” And that was my diagnosis.
Jennifer: “Maybe, it's lupus?”
Tanya: “Maybe, it's lupus.” She didn't explain anything about the disease. They put me on new medication. I asked them questions about it. What are the side effects? What are the long-term? She really didn't explain much. And then I said, “That experience was, I would say, subpar. I think I'm going to go with a different doctor and see what they have to say.” I saw a different doctor and the initial assessment, they said, “Of course, you have lupus. No one explained anything to you?” I said, “Oh, not at all.” And I have heard from client after client that they get a very vague diagnosis because lupus is hard to diagnose. I will say that. The diagnostic criteria is very strict. So oftentimes, people will have symptoms for months, even years, before they get a clear-cut diagnosis.
That is one component of lupus itself, but I think the other component is that unfortunately, doctors don't have a lot of time. They may not have, let's say, bandwidth. I'll be very empathetic to their position to sit down and explain, “Hey, here is what we think it is. Here's what you should look out for. Here are the ways that this could go.” Lupus is a very interesting disease because it can affect so many organ systems. So every single person that I work with that has lupus, it actually comes up in a lot of different ways. Some people just have this list of symptoms and someone else may have none of those symptoms and a completely different list.
Jennifer: Wow.
Tanya: It's tough, yeah.
Jennifer: Oh, wow. Can you share some stats on how many people are diagnosed with lupus? For especially somebody who might have heard of lupus, but isn't quite sure, what is the frequency with which people seem to develop or at least get diagnosed? I feel like with a lot of these issues as you said, it's difficult to diagnose and you might also have somebody who never gets diagnosed because they fall through the cracks and it's just blown off. So, what are the stats that you're aware of around lupus?
Tanya: The Lupus Foundation of America estimates about 1.5 million Americans have lupus.
Jennifer: Wow.
Tanya: Another stat that's a little crazy is that 63% of Americans don't even know what lupus is, or are slightly familiar with the word, but really don't know how to define it or much about it. So, there's a lot of people that can be affected by it. The deaths are a little bit hazy, you're right, because diagnosis is a little tricky or may not be diagnosed for a long time. And then, people really don't know about it. So, they don't know what signs or symptoms to look out for in themselves or their loved ones or their family members. That is tough, yes, but it affects a lot of people. In North Carolina alone, so I'm in North Carolina, it's about 55,000 people.
Jennifer: Wow, my goodness. And when you go online, I was saying to you, I feel like lupus gets forgotten about in a sense and maybe it is because… I oftentimes wonder how many people have certain conditions and they just never get to a diagnosis and they learn to just accept to some degree that their life is… It has these symptoms and this is how it is for them, with no explanation as to why they feel a certain way and have perhaps a poor quality of life ultimately as a result. You mentioned muscle pain, joint issues. It also impacts the skin, which I'd love to hear more about because I think listeners would be curious, especially if they're dealing with a litany of weird symptoms that don't quite make sense. Okay, I'm going to restart that question. Sorry, it froze.
Tanya: Yeah, it froze.
Jennifer: I don't know what happened.
Tanya: It froze.
Jennifer: I can imagine that there's a lot of people out there who are not super familiar with the different body systems that lupus impacts and they might be listening to this going, “Wow, I thought I had eczema,” or, “I thought I had rosacea, but now I realize that maybe all these other symptoms are something else.” I know you said some people have some symptoms, some people have others, but generally speaking, what are some more classic symptoms of lupus?
Tanya: Right. The most common symptoms of lupus include extreme fatigue, which is really vague. It's really hard for people to give that as a subjective feeling, feel tired all the time, to a doctor which I think is why there's also a bit of miscommunication there. So, another statistic about lupus is that nine out of 10 people affected with lupus are women and most are diagnosed between the age of 15 and 44. A lot are new moms. Pregnancy is a trigger. So you've got a new mom coming in to the doctor saying, “I am so tired,” and the doctor's saying, “Of course, you just had a baby.” That can be one area where it's really confusing and also leads to that delay in diagnosis.
Other symptoms include pain or swelling in the joints or muscles, swelling in the hands, feet, or around the eyes, especially if it's pretty quick. Let's say on Friday, you're feeling fine. On Sunday, you notice, “Whoa, my ankles are really swollen. I've gained quite a few pounds in just a short period of time.” That's actually a sign that lupus is attacking your kidneys, which is the most concerning and most critical way that lupus can affect your body. And if that happens to you, please seek medical care right away. That is actually the most emergency of the different types of symptoms. Lupus can lead to headaches, low-grade fevers, photo sensitivity. So if you notice, “Oh wow, I spent the day in the sun. And for days after, weeks after, I really don't feel well,” that could be a sign of lupus.
But then, there's a wide variety of symptoms that are less talked about. Chest pain, all sorts of digestive problems, stomach pain, diarrhea, heartburn, just discomfort in general, can also come with lupus. And then, it's also like, “Well, is it because of this other medication I'm on?” It gets really confusing. Now, in terms of the skin, there is a very classic butterfly rash. And actually, if you look at any of the lupus awareness things, there's usually butterflies with it because of this rash. This does affect about 95% of people that are diagnosed with SLE, which is systemic lupus. It's really redness here and then here. Especially with fair-skinned people, it's very red.
For people of color, it can actually be also a little confusing to diagnose because it's not so obvious. It can be mild for some people, can be quite severe for other people. The other skin permutations of lupus include hair loss, so non-scarring, alopecia, sores in the mouth and the nose, which can be really uncomfortable and really interfere with eating. And then, another one that's not a skin permutation, but can be a warning sign is if people's fingers or toes turn white or blue when it's cold or there's a shift in temperature. That's Raynaud's and that's something that often overlaps with lupus as well.
Jennifer: It's interesting because you're listing off all these things and they seem so all over the place. When you were saying initially, “Well, you just had a baby and you're tired,” well, the first thing I think is, “Well, maybe thyroid issues.” But this went in a whole different direction. You could have chest pain, you could have all of these things that definitely could be difficult. I could see why it feels like it doesn't make sense and especially depending on what you have. I could see why doctors could dismiss it. Out of curiosity, from the point when you thought that the symptoms were weird and something wasn't right, obviously you had this flare up, to when you actually got the diagnosis just for you, how long was it? Was it pretty fast? I imagine for most people it's not very quick.
Tanya: Yes. For most people, it's very long, but because I already was coming in with a list of 4, 5, 6 autoimmune diseases, my doctors were on high alert. They already knew, “Okay, there's a lot going on with this young lady.” And I was in my twenties at that point. So, we have to pay attention. Whereas, a lot of people, it's a lot more vague. It's a lot more mild. It comes and goes. Lupus comes in flares. And actually, that makes diagnosis very tricky too, because sometimes your labs will be clearly marking lupus in a flare and if you start to feel better, things start to quiet down. And let's say, you go to a new doctor and get a new set of labs, it may not be so clear anymore that you have lupus. So it's not just, “Okay, I've got it,” and my labs will consistently be saying the same thing. It oscillates back and forth.
Jennifer: Okay. So, this sounds like there's a lot of inflammation that's involved in this whole picture. I mean, a lot of the cases that I work on too with other skin issues, a lot of it's inflammation-driven and it's trying to figure out where the inflammation is coming from. But what is your approach to saying, “All right, we have an inflammatory situation. Now, what?”
Tanya: Yes, great question. I am a dietician. So of course, my first line of defense for helping people is always, “Let's look at what you're eating.” But people are not one single factor. We live our lives. We have people in our lives. We have stress in our lives. We live in places and do different things in our day. So diet is a huge component, but also your stress, how much sleep you're getting. If you are, let's say, working a job and then doing caregiving for little people, older people, whomever in your life you are giving a lot of time and yourself to, that's all related to stress and how much that inflammation can rise.
Also, how much movement you would do in your life, if exercise is something that is a part of your daily life or if it's not. Environmental factors. Unfortunately, there are toxins in the world, pesticides, cleaning products, things that we can be exposed to quite often that may not be the be all and end all, but let's say, we're adding all of these factors on top. Then suddenly, we can get a really great-looking situation with my help, or we can have a really tough, very pro-inflammatory situation. So it's a lot of things, but I definitely work with people mostly on, “Let's start with the diet and then we can build from there.”
The two main things I always start out with because they're almost the easiest to change… I don't want to say that. One is stopping smoking. I know it's not easy, but this is one thing that you can certainly survive without the cigarettes and thrive. And there's a lot of support in place. There's smoking cessation programs. There're others like Plan B and Plan C of you could do the nicotine gums, the patches. It's not easy, I'm definitely not saying that, but it's definitely something that makes a huge difference. So stop smoking, really helps with lupus, and then being careful with sun exposures. Another huge thing to be mindful of.
Jennifer: And so, can you talk a little bit more about that? You had mentioned being really sensitive to the sun and it can make you feel sick even days afterwards. How is that described in terms of a symptom or maybe within as a lupus trigger?
Tanya: Yeah. I also didn't mention another type of skin permutation of lupus, which is subacute cutaneous lupus. That's one of the things that may come up if you are exposed to the sun for a long time. Let's say, you just say, “Oh, you know what? I want to go garden.” You're out in the sun all day long. It's been a long winter. You really haven't gotten that much sun exposure. That level of UV exposure can really cause not only a systemic flare, but also the skin rashes to come up. Sometimes, it may take a couple days and then yes, the flare can last weeks or even months afterwards. That UV light is just really inflammatory for people with lupus photo sensitivity.
But there's a lot of things that you can do to prevent that too. So obviously, stay out of the sun during the 10:00 AM to 2:00 PM. Put on the sunscreen. I really recommend people use the mineral sunscreens that physically block the UV rays, versus the chemical sunscreens. So, the ingredients would be zinc and titanium. Those are the physical sunscreens. Your listeners, if they listen to other podcasts, they've heard a lot about that.
Jennifer: Probably.
Tanya: Yes. So definitely, a physical sunscreen and then people often don't realize that you actually need to use a lot of it. If you're covering your full body, it's one ounce of sunscreen. So, getting almost to a shot glass worth of sunscreen.
Jennifer: Oh, my gosh.
Tanya: Yes.
Jennifer: A shot glass?
Tanya: It's a lot.
Jennifer: Wow, that is a lot.
Tanya: It is a lot. When people tell me, “Oh, I have my sunscreen from two summers ago,” that means you weren't using enough at all. You need to go through one of those bottles pretty often. And you have to reapply if you've been sweating or swimming. Apply 30 minutes before you go outside. There's a lot of things with sunscreen where it can be really helpful. We just have to follow the steps that help it work its best. Then clothing
Jennifer: Can I ask you a question-
Tanya: Yeah, of course.
Jennifer: Because I think it's interesting what you just shared that the sun can be a trigger for some individuals. And so, you really have to watch your exposure. But then, we hear on the flip-side of people saying, “No, but we need sun exposure. Our skin makes Vitamin D for us.” So, how do you handle as a dietician? Because I'm sure you're monitoring people's nutrient levels. What does somebody do? I worry someone's listening to this going, “I feel like I'm supposed to do this healthy thing of getting outside and being in the sun to get my Vitamin D, but then I'm damned if I do it.” So does somebody need to be more mindful of A, their Vitamin D level, and then B, how they get their Vitamin D into their system?
Tanya: Fantastic question. You can actually still increase your Vitamin D with proper UVA and UVB protection. I was just reading a scientific study about how people's Vitamin D can go up, despite regular and actually appropriate use of sunscreen. It's almost have your cake and eat it too. So you can still protect yourself from the negative effects of sun, but get the positive to increase your Vitamin D. Now, I will say if you are coming to the doctor and your Vitamin D level is very low… Less than 30 is usually what labs will say is low and deficient. However, other studies that I've looked at says really ideally for lupus patients, you should be above 50. So if you're coming in anywhere in that lower range, you may just need to supplement for a while, perk yourself back up, and then it's easier to maintain. But low Vitamin D or Vitamin D deficiency is actually associated with more autoimmune flares and more autoimmunity. So, you definitely want to take care of that and get yourself to a sufficient level.
Jennifer: Can I ask you quickly? Because this has been in my head. I know we don't have a ton of time. I feel like we have so much to talk about too. So…
Tanya: So much. I would love to talk [inaudible 00:24:00].
Jennifer: We'll have to do this again, but because you've been through this and I'm sure too maybe you ask your patients and clients if… No one is suggesting that you're running these labs, but do you know is there any type of labs that maybe if somebody is worried that they have lupus, do you just say, “Hey, I want to get checked for lupus,” or could you ask your doctor to run some just specific labs that might give them some clarity or at least maybe then if it comes back as high or positive or whatever, the doctor, your primary care, or GP might actually then refer you to a rheumatologist, or should you go to a rheumatologist?
Tanya: Yes, great question. Everyone, the gold standard for diagnosing lupus is called the ANA lab. They're always going to run that first. Now, that sometimes can be a little confusing because it can go positive to negative depending on what your immune system's doing in that moment. Basically, it's a whole panel of antibodies. There's a lot of them. There's anti-dsDNA, anti-Smith, anti-La, anti-RO. There's a lot. Just ask for, “Hey, I really think these symptoms make sense to me. It looks like a list that is consistent with lupus. Can we just run labs?” They'll do the ANA first and then they may do that whole panel of antibodies.
Jennifer: Okay. And do you recommend that people ideally get to a rheumatologist, or do you feel like a primary care would have enough tools in their toolbox to work with someone with lupus?
Tanya: I would say it would be an outstanding primary care provider, but that would be difficult. It's not that many people, it's not that diagnosed. Really, you should see a rheumatologist. Even rheumatologist in, let's say, more rural error areas or less populated areas don't even have that many lupus patients on their docket to begin with. So really try to push to see a rheumatologist, if you can get that referral to see the specialist, because it's just unfortunately, doctors are very specialized. They really focus in on one area and lupus just is not so prevalent.
Jennifer: Yeah. And I think too a lot of people listening to this, especially because we haven't talked about lupus before, might not even realize that diet could play a role and that someone like yourself could be a huge asset to them in their journey because yes, there're medications on one side. But as you have very clearly shown us, not only in your clinical practice, but also personally, diet and other lifestyle factors can play a huge role and that can make a big difference in your quality of life. Any nutrition tips that you could share with everybody real quick? I mean, I know you have a lot of information on your Instagram and on your website and you've got a really great guide that everybody can go grab off your website to dive into this deeper. But maybe, you have a few tips that people could start thinking about making those changes now?
Tanya: Yes, for sure. There's so many. And also, I talk to a lot of people that come to me very desperate and they feel so bad and they're just like, “I just want to feel okay.” That's great. Okay is a starting point, but you could feel great. Diet and lifestyle can make an enormous difference between feeling really disabled, unable to do the things that you love in your life, to feeling great, feeling full of energy, full of vitality. So, it does make a huge difference. I will say, in terms of really big picture things that you can do with nutrition is one, oftentimes people come and they have a very unhealthy gut microbiome. It's not a fault of your own. It's just that sometimes, that's how the cookie crumbles.
A lot of antibiotics, perhaps food poisoning, something has gone off-course and it just needs to be re-calibrated. So definitely, rebalancing the gut microbiome makes a huge difference. A lot of doctors and dermatologists talk about it just for skin health in general, but for autoimmunity, it's a huge deal. So now, let's say we've gotten your gut microbiome to a much healthier balance. Then increasing the sorts of super nutritious foods that really help your body run at its finest. The skin and the hair is usually the last place nutrients go and if we can reduce that inflammation, the skin rashes will come down, the hair will come back. And then if we give your body all the nutrients that it wants and needs, then it comes back healthy and feeling good and you're feeling good.
So, those are the two places to start. We always correct the gut microbiome and then fill in the things that are really nutritious. Also, one thing I always work with people is, “Let's figure out if you have any trigger foods.” There's a lot of foods out there that unfortunately may just not agree with someone. And so, that takes a little detective work and we work together. I always collaborate with people on everything and figuring out what foods can cause not only digestive distress, but also, those flareups of lupus symptoms. It's amazing how clear it becomes for people and they had no idea before.
Jennifer: Yeah. And that's amazing, just for your own personal testimony, that you've been flare-free you said for six years.
Tanya: Yeah.
Jennifer: That's amazing. That is truly huge.
Tanya: It's nice to go to bed knowing, “Okay, I'm going to wake up feeling good,” where, when I was having my lupus flares, I had no idea if I was going to wake up. Honestly, to just get out of my bed was excruciating. He's my husband now, he's a good one, I kept him, but he helped me get dressed. He helped me get my breakfast and turn the doorknobs to get out of the apartment. It was really tough.
Jennifer: Wow.
Tanya: And I can really empathize with all the people that are struggling with those symptoms right now, but it can be better.
Jennifer: Yeah. It's amazing the little things that we take for granted. When we feel good, you don't realize. Like you just said, to just turn a doorknob or to turn a handle or to do anything that maybe we don't even think about, you just do it. When someone is in a flare or depending on what's going on with their particular physical body, it may be excruciating. I want to thank you so much for being here, Tanya. You have a guide called The Lupus Dietician's Guide to Skincare, which everybody can get on your website. I'll definitely put a link in the show notes. So if you guys want to grab that from Tanya, I would highly recommend doing so. She's got a lot of great tips and strategies in there. And I would also encourage you to go visit her website. Tanya, where can everybody find you?
Tanya: You can find me in so many places. Instagram, Facebook, my website, it is all The Lupus Dietician. My website, very straightforward, www.thelupusdietician.com. You can Google it. You'll find me. I'm the only one. So, it's all The Lupus Dietician.
Jennifer: Awesome. Well, thank you so much for being here and sharing your story, but also this wealth of knowledge in the inaugural episode on lupus. I'm really excited to share this with everybody and I know too that for anyone listening, if you know somebody with lupus, please share this episode with them. I think the best thing that we can do as a community is share and connect other individuals, especially when you feel like you don't have any options. Now, you could share this with somebody who has lupus and they know, “Oh wait, I actually have other options than just the medication. I can do a bunch of different things together.” And Tanya's a great person to connect with about that. So…
Tanya: Yeah, thank you.
Jennifer: Thank you for joining us.
Tanya: Thank you so much. This was such a pleasure and I really had a great time. Thank you so much.
