In this deeply moving episode of PCOS Unfiltered, Lindsie sits down with cookbook author and chronic illness advocate Annie Toro Lopez for a conversation that goes far beyond symptoms and lab results. Annie shares her journey of being diagnosed with lupus (SLE) in her early 20s, navigating years of aggressive medical treatment, fear-based prognoses, and the emotional weight of being told what her body could—and could not—do. Annie opens up about motherhood in the face of autoimmune illness, the trauma stored in the body, and how therapy, mindset, and self-understanding became essential parts of her healing process. After decades of intensive work, Annie reached a milestone many don’t even realize is possible: a negative ANA after 20 years. Later, following profound personal loss, Annie received a celiac disease diagnosis—one that ultimately led her to build community and create resources that now support thousands of people navigating food and chronic illness. This episode explores what happens when a diagnosis threatens your identity—and how healing can begin when you refuse to let illness define who you are.
If this episode encouraged you, the best way to support the show is to leave a rating + review, and share it with someone who needs hope that healing is still possible—even if it’s messy and nonlinear.
This episode includes discussion of trauma, grief, and chronic illness. Please take care of yourself as you listen.
The content shared on PCOS Unfiltered is for informational and educational purposes only and is not intended as medical advice. Always consult a qualified healthcare professional before making changes to your health or treatment plan.
(0:00 - 0:44) She was just like, this is, urine is off the charts, like, I've never seen this before. So of course, you know, rheumatologist and all the things and all the drugs and the prednisone and you're at the doctor all the time and when you get your blood drawn, it's 12 vials and when you got, you know, and oh, they're telling you all the things you can't do and that, you know, this disease is going to kill you eventually, like, they'll straight up tell you that, right. And, and I remember, and then I, and I didn't, I remember, you know, wanting to have kids and having that conversation and being told it wasn't recommended and I did anyway.
(0:47 - 2:53) Hey friends, welcome back. I'm Lindsie and today's episode is one of those conversations that stays with you because it's about more than a diagnosis. It's about identity, grief, resilience, and what it looks like to rebuild your life one choice at a time. My guest today is Annie Torre Lopez, a cookbook author, chronic illness advocate, and a powerful voice in the celiac and autoimmune community. Annie was diagnosed with lupus, SLE in her 20s and after years of navigating autoimmune challenges, she reached a milestone many people don't even know is possible and negative ANA after 20 years. Then in 2023, after the heartbreaking loss of her sister and her best friend, Annie was diagnosed with celiac disease and she transformed that season into something that now supports thousands of people. Her second cookbook, Simply Gluten-Free, Real Ingredients for Everyday Life is all about approachable nourishing recipes that help you retain confidence and joy in the kitchen, even when food feels complicated. In this episode, Annie and I talk about what it's like to be dismissed and how the right provider can change everything. The emotional reality of autoimmune illness, motherhood, and nervous system survival. The role of trauma, therapy, and mindset in healing. How a diagnosis can shake your identity and how to rebuild it and why community might be one of the most underrated treatments we have. This conversation includes discussion of trauma and grief, so please take care of yourself as you listen. And just as a reminder, the content shared on PCOS Unfiltered is for informational and educational purposes only. The views and opinions expressed by the hosts and guests are not intended to serve as medical advice. Always consult with a qualified healthcare professional before making any changes to your diet, exercise, or treatment plan. The information shared is based on personal experience and expert interviews and is not a substitute for professional medical guidance. If you've ever felt like your diagnosis stole your identity, this one is for you. Here's my conversation with Annie Toro-Lopez.
(3:01 - 7:39) Hello and welcome to Annie. Our stories aligned in a lot of ways, so I'm super excited to go through this episode with her and for our listeners to hear your story and what you've learned along the way. So let's just kind of, you know, dive in and get started. Tell us, you know, a little bit about yourself. You've had some, you know, major stuff happen. You've been diagnosed, you were diagnosed with lupus and just kind of how you overcame that. Yeah, well first I want to thank you for having me. Like what a great opportunity and it's a real honor to be here. So thank you so much for that. Yes, so I had, I was diagnosed in my early 20s. So I'd had, and I had symptoms when I was, you know, younger, which I think most of us do when you're diagnosed with an autoimmune condition, right? Like it takes a while for them to figure it out. And I was, I had, well, when I was first diagnosed, I was going to a doctor for the first time that I was seeing for long enough to even notice a pattern, you know, and I think it takes that too. And to be open to it and listen and hear, because I think, you know, and she was a female doctor and I think that makes a difference too, because as women, we're so dismissed with our symptoms. And so they couldn't dismiss this. So I have, I had ulcers all over my legs. I had like ulcer from that were, I had renodes that I didn't understand at the time, of course, right? Like, so this was the early 80s. I'd had renodes when I was in, when I'd gone to college, I went to UNL, the University of Nebraska in Lincoln. And you know, winter's cold, really cold there. And like, I couldn't, I remember getting to class and like not being able to hold a pencil to take notes. And my, my hands were like white and just like, you know, the tapered fingers, all the things, right? Purple hands, all of it, the red, white and blue syndrome. Yeah. So I didn't, you know, I think that so many times too, we don't know different, like we don't realize that other people have different experiences, especially when we're really young. Oh yeah. Well, everybody has this experience and it's not, it's not unique or unusual. And so I was working as a vet tech at the time and I had had long, long day surgeries and all the things and you know, sat down and took off my shoes. And the vet I was working for, his wife came by and was like, what is wrong with your feet? And I was just like, what do you mean? Right. And she's like, and they were purple and in bad, not in good shape, like bad. And then, and then I also had like ulcers up on my legs. And I always say to like our, our ability, the human ability to like live in denial is I, no words. So that's, you know, that was part of it. And so anyway, fortunately I, she actually gave me the name of a doctor and he was booked and which, and he, Oh, we just hired this new doctor from Chicago. And her name was Teresa Hebel, amazing human. And I was one of her very first patients here. Later, she was named 5280, which is so Denver's mile high city and 52, a mile high is 5,280 feet. So you see 5280 referenced here a lot. And there's a 5280 magazine. And she was the number one doctor for years, like in Denver, because she, she was just wonderful. And I was so fortunate, so fortunate to have her. So she was like, you know, so then I started going in with like transient symptoms that shouldn't be transient. So things like I had hyperthyroidism and then later it was gone, like gone. And she's like, so yeah, that doesn't, that's not right. So finally I was like, you know, I said, I said, do you think, I said, do you think I'm a hypochondriac? Because as women again, right. We're taught like, you know, minimize and you're okay. And don't do that. You know? And she's like, no, not at all.
(7:39 - 15:39) She said, you know, you come in and you have this, these symptoms or whatever, and we do blood tests and it, it confirms. And so finally she's like, I want to do an ANA and I want to test you for lupus. And I was like, I had no idea. I didn't know. I was like, okay, well, you know, more, you know, more tests, more, you know because you know, that's where we live when we have lupus, right. And all the tests. And so I came back and she was, I remember her walking in the room and this was a long time ago, but I remember the look on her face and she was just like, this is, your ANA is off the charts. Like I've never seen this before. So of course, you know, rheumatologist and all the things and all the drugs and the prednisone and I was a vet tech. So I knew, I know enough about drugs and drug, you know, drug interactions and such. And my vet was great too about, you know, just information. And Terry was wonderful too, about just giving me the information that I wanted. So, you know, I mean, you, you, you know, I'm sure people have lived that, right. It's, it's, it's so much. And you're at the doctor all the time. And when you get your blood drawn, it's 12 vials. And when you got, you know, and, oh, they're telling you all the things you can't do and that, you know, this disease is going to kill you eventually. Like they'll straight up tell you that. Right. And, and I remember, and then I, and they didn't, I remember, you know, wanting to have kids and having that conversation and being told it wasn't recommended. And I did anyway. And I didn't understand, I don't think I comprehended well, not, I don't think I did not comprehend at the time what it meant, like what that meant that having an ANA, right. Like just having an ANA means that your body could just like attacking. Cause I, so I had like kidney problems, like, you know, the things you were full blown. Yeah. Yeah. And I didn't understand that what that meant is that like your body could be attacking fetal cells just as easily as it's attacking kidney cells or my eyes or whatever the things that lupus does. And I was fortunate. I had, I had two live births and two, you know, two healthy children, but it was really, really rough. So like, you know, at the doctor every week and, you know, all the ultrasounds and all the blood tests and all the things. And I was lucky because I had my, you know, my husband had really good insurance and we are, I had good insurance through my husband, I guess that's what I mean. And so going there. Oh, so then both of my kids though, of course went into ICU, you know, went to, went to NICU. I didn't get to hold them. I had, they were both five pounds. My son was induced five weeks early because, and I was, I was zero dilated and zero effaced. And they're like, we're going to have this baby because he's safer out than in, because I was losing, I didn't have an amniotic fluid. My amniotic fluid had stopped producing. Oh, wow. So they were doing like they did amniocentesis. And so then they did that to make sure that his lungs were developed enough to actually deliver him. So I, my body was not prepared to give birth. So that was an ordeal. And then my daughter then was also, she was just really small because I had vascular involvement as so many of us do. Right. And so, and the placenta is a vascular organ and it was just very small, both of them. So then I remember my doctor kind of, you know, pretty much sitting me down and I was done anyway. I was not having more kids. I remember him just saying, you know, it's like, you've got two healthy, beautiful children and they need you and no more, you know, like you like really, like really no more. So, and I hadn't, I wasn't going to anyway, but still like, you know, it was like, and I think that was sort of a big, not that you don't understand, but you don't understand, you know what I mean? Like it's, it's, it's, it's a lot having that understanding then like really having them just sit down and look me in the, you know, my doctor was, and he was wonderful. He was one of the best male doctors that I've ever had. And he just, you know, having him look me in the eye and just, you know, give that to me was really, it really was a light bulb, right? Like it really was just like, Whoa, well, after I had my son, I couldn't stop crying. Like, you know, for a long time. Wow. And I was really fortunate because I called my OB's office and got, you know, his physician's assistant said, Hey, you know, well, and I told her, I was like, make it stop. I want to make this stop. I can't handle this. And she said, sometimes when you have a child that brings up issues in your own life or your own past, and here's the name of a really good therapist. Oh my God. Right. This is the eighties. Like no one even talked about therapy, much less like hand you from a doctor's office and say, this is probably what you need. Oh my God. Like life-saving, life-saving. So through therapy, I uncovered a lot of my own, you know, I think as so many, so many of us with auto-immune have, you know, it's the trauma of the past. And so, um, so I had a stalker when I was 10. So for about a year, didn't tell anybody when I told, well, that's not true. I told one person who was my best friend and she was shot and killed by her, by her brother accidentally. Oh my gosh. And when you're 11, you're still have like magical thinking. Yeah. Yeah. Right. And so, and of course everything we internalize everything and everything's our fault. So even like the sexual assault for a year from my stalker was internalized, like, this is my fault. And so my friend Janice would like walk me home from school, but then she was shot and killed. And so for me, it was just like, well, you just don't tell that story. Like, right. And so I completely shut that down until I, you know, was able to uncover that in my own therapy. And that was of course, you know, revolutionary for me. Yeah. Yeah. So that was part of the, so I did reverse my lupus. It did. I have not had a positive ANA for 20 years. I had my first negative ANA when I was 41. It took very concentrated and specific energy and effort. And it was, you know, there's no magic. It was, it was a lot of work. And I, it, it, you know, sometimes I was in the hospital for a week at a time. So it wasn't, there was a lot of, a lot of work, you know, a lot of understanding, you know, learning and understanding and, and integrating, I think a lot of that and, and learning to make my story just a part of my story and not something that is based in any sort of shame, because of course, you know, we blame ourselves for all those things. And so that's part, that's why we don't tell that's why we don't, you know, it's because I'm bad. It's because I've done these things or whatever.
(15:39 - 16:32) And especially when you're 10. So at any time, that's, it's not it's anytime. So that was, but it was so healing, right? So like, that was part of the work that I had to do in order to learn my own value in order to love myself in order to realize that, like, I was worthy. And I was enough as we say now, right? Yeah. Yeah. So that was all a learning. It was all learning. What really, I think part of what really, you know, part of the real, well, there were, I mean, a few things there, obviously, but I really refuse to, I refuse to define myself in terms of my illness. Let me tell you now living with celiac, ironically, there's no, there's no avoiding it. (16:32 - 16:44) Like, you have to talk about it all the time. But it's, it's, and it's fine. I mean, I'm, I'm healthy, and I don't eat gluten. And I'm fine. I'm healthy. I feel better than I felt.
(16:44 - 18:43) And I can't even tell you how long. So, um, but look, deciding, deciding to not define myself in terms of, of illness, truly deciding to define myself in terms of wellness, like, you know, had to like, really integrate that into my, into my thoughts and my, you know, how I chose to live. And it's not easy when you're dealing with that. And, and the other thing I found, I've talked to my daughter about this a lot. But I think at the time that I was married to an emotionally unavailable person. At the time, I think when you're going to doctors, and you're seeing them, and they're all like, you know, we've got you, you know, we'll take care of you, you're, you know, you're safe here, and you are like, I mean, there's this feeling of like, care. And, and, and, and that's, that's good. I mean, that's not negative. But we lean into that when we haven't had that in other ways in our lives. And so I you lean into that model, and you lean into that, you know, oh, yeah, you know, and of course you do, like, why wouldn't you like I was, I was, I was a lonely mother, and, and I was hurting, and I was sick all the time. And why wouldn't you? So I think that's, you know, that happens too. And then we start to define ourselves through that. Yeah. And, and I think, you know, that that and therapy helped me with that too, to say, like, no, I want to be I want to be defined, I wanted to find myself by how well I am. So I did, I did a lot of different things. I mean, certainly changed up my diet. But it wasn't just that I did visualization. And visualization is scientifically proven to, you know, to impact our bodies.
(18:43 - 21:19) And I had a little cartoon that I had in my head. And I had my little my my and I did a lot of about my immune system and how it works. Right? Like, like, what is what, like, why? Why? Like, why? It makes no sense at all for my body to attack itself. And what world does that even make sense? So I learned a lot about my immune system, I learned what part of my body actually produces the antibody? You know, what, what is it doing? Like physically, what's happening in my body? You know, if it's killing the nucleus of my cell, how does it even get to the nucleus of my cell? Does it break through the cell wall? Like, I wanted to know, like all of it. And then I visualized like, and I had my little white steed, and I had my shield. And I had my like, I used vitamin C, vitamin C, of course, it's like build your build your, you know, your veins and your circulatory sites. So good for so many things, so many things. And so I had my little I had my little sword of like vitamin C that was like, right. So I literally had and it was just a fun visualization that I would do. And I would have like conversations with my immune system, like flat out, like, like, this isn't happening. Like, stop. If I have cancer, or if I have the flu, you are on, like, you know, go for it. But like attacking the nucleus of my cells, like needs to stop, but I need to stop now. So I would like, do that and go there and like have all the do those things in order. I'm like, this doesn't make sense to me. This needs to stop. And it took a long time. It took 20 years. It took 20 years. And I mean, I had episodes where I had my lung collapse, and I had, you know, pericarditis and you know, what they call a cascade. I'm sure you know. Yeah, so I mean, I had that too. It wasn't and and I, you know, I, I don't have all the answers here. It's a very, very, very complicated issue. And I always worked hand in hand with my doctor. I never while I was seeking alternatives while I was looking at Eastern medicine or acupuncture or doing chakra, you know, chakra work or meditation or whatever. She was always involved.
(21:20 - 22:35) So I was fortunate that way. Yeah, yeah. Yeah. I mean, you said so many good things there. And so many good things. I mean, I think I just, you know, appreciate your story. And I hope the listeners appreciate your story. Because, you know, while it's it's not PCOS, I do believe I have some other listeners on here that have some other stuff going on. And I still think it's very relatable. In the sense of, you know, you're given this diagnosis. Okay, now what do you do? So, you know, you overcame that you didn't devastating diagnosis. Yeah, not like, right. I mean, yeah, for you know, with, with where you were in it for sure. Like when I was diagnosed, mine was caught early, you know, so I didn't have the organ failure, you know, I wasn't to any of the organ damage or anything. But you know, it's possible. And so like that, even just that knowledge alone, just like, I think, you know, just knowing that it's possible and that, you know, that's, it's terrifying. Yeah. And, and, and, and the medical community often isn't like, they're not sharing in that way, right? Like, as far as Oh, I got you at all.
(22:35 - 23:15) But if they're not reassuring in the way. Yeah. Yeah. Yeah. This you can you can I mean, they are I mean, you know, I think you know what I'm saying? But in general, no, I mean, you know, you said something about, you know, women being dismissed and unheard. And that's, I think that's very true. Again, I think very relatable. You know, like you mentioned, you were fortunate to have sounds like a number of providers that were very supportive and open to what you're going through. And I encourage listeners to find providers like that. If there was somebody that is, is very close minded. Yeah. And just wants to prescribe exactly.
(23:15 - 25:09) And that is not for you, because that's not going to get you feeling better. You're going to be stuck. You're going to live in that victim mentality. And I have Wow, this conversation with Annie was so meaningful, because it held the full picture, the medical side, the emotional side and the human side. Here are a few takeaways I hope you carry with you. You're not too much for needing answers. Being persistent about your symptoms is not being dramatic. It's being wise. Healing is really one thing. Any story is a reminder that it can be medical care, plus mindset, plus nervous system work, plus support, plus time. A diagnosis can feel like it steals your identity. But it can also become the beginning of a new relationship with yourself. One rooted in worth, agency and possibility. And community matters. Loneliness keeps people stuck. Connection helps people move. Annie also shared something I really loved. She didn't just wish for community, she built it. And if you're listening, thinking, I don't have my people right now. Let that be your permission to start small. One message, one meetup, one safe person. If you want to connect with Annie, I'm going to link everything in the show notes, her cookbook, Simply Gluten Free, Real Ingredients for Everyday Life, and her website, AnnieTorreLopez.com. She mentioned it's launching soon with links for booking, podcast interviews, and more. She also writes on Substack, and we'll include that too. And if this episode encouraged you, the best way to support the show is to leave a rating and a review, and share it with someone who needs hope that healing is still possible, even if it's messy and nonlinear. Thank you for being here. I'm sending you so much love, and I'll see you on the next episode of PCOS Unfiltered, Nourish, Heal, Thrive.