Episode 93: Why Traditional Treatments for Lupus and Other Autoimmune Diseases Aren't Working, wi...

Hi, I'm Dr. Tabitha, the functional gynecologist. I'm a board certified OB, GYN and functional medicine physician. I've embraced the world of functional medicine and wellness through my own personal health journey. And I'm super excited to share my wisdom and unique perspective as it pertains to women's health. So if you're struggling with hormone imbalance, weight gain, period issues, anxiety, insomnia, you name it, then you've come to the right place. I want to be your functional gynecologist. So welcome. Hi, ladies. So I'm really excited about this episode because we are talking about autoimmune disease processes. You know, my guest today specializes in lupus because she has her own personal story of being diagnosed with lupus and overcoming it and getting control of that. But essentially, autoimmune diseases are all the same, you know, disease process. And I have Hashimoto's, which is an autoimmune disease in my thyroid. And, and many people have celiac disease or rheumatoid arthritis, psoriasis, other autoimmune conditions. And at the core of the development of autoimmune disease, I want you to understand, you have to have the genetic propensity, so you have to have certain genes to be activated or triggered. You have to have a trigger that turns on these genes. And then you have to have a leaky gut or increased intestinal permeability, which we all have at some point in our lives because our endothelial lining in our gut, which is one cell layer thick, it's what's, you know, separating the food we're digesting and our bloodstream. There's only one cell layer, and those are easily destroyed. The junctions in between them are easily broken by steroids, antibiotics, pesticides in our food, food, too much cortisol production from chronic stress, hormonal shifts like pregnancy and menopause, steroid use, all of these things can damage those gap junctions and create microscopic holes for things to get into our bloodstream that shouldn't. And our immune system gets activated and sometimes it gets confused and starts attacking our own tissue. That's an autoimmune process. So for me, my autoimmune disease was activated from having a pregnancy at 17 years old. Talk about stress, right? The hormonal shifts and the stress of being a teen mom and dropping out of high school. So once that those genes are activated and turned on, it's really hard to turn them off. But you can control. There is so much evidence coming out that autoimmune disease Processes are partly reversible, if not completely, but partly. And you can get them under control without nasty medications with major side effects. The key is going back to where it originated, and that's your gut. And so I'm really excited to talk to my guest today because she understands that you have to evaluate and treat gut dysbiosis, gut dysfunction. And so what I want you to understand is whether you feel like you might have an autoimmune process developing, which usually feels like fatigue without explanation. Muscle weakness, soreness, joint pain. That's not explainable. Different conditions. Sometimes it's an autoimmune process that just hasn't been diagnosed. I will say, as far as Hashimoto's thyroid disease, the majority of conventional doctors do not check for thyroid antibody levels, and that's how it's actually diagnosed. So you might be diagnosed with hypothyroidism, but if they didn't check your antibody levels, you might have an autoimmune process that you don't even know about. And that's why taking Synthroid or other hormones for your thyroid doesn't make you feel better, because your thyroid is still being attacked by your immune system. So as long as that attack is inappropriately happening, you'll never feel better. You'll always be in a state of inflammation. So this is a really good episode for everybody to listen to, because I guarantee that, you know, somebody who has an autoimmune issue or. Or who has a chronic condition that they really haven't figured out or been able to get control of and feel better and reclaim their health. So this is a really common issue, unfortunately. But share this with everybody. You know, spread the love, spread the wisdom, because we need to help each other feel better and live the amazing lives that God put us on this earth to do. And we have to do that as sisters and a community, because we can't do things alone. It just. It doesn't work. So I love sharing stories and learning from each other's experiences. And I know that you have your own story and your experiences, and I would love to hear about them. I'd love to shout you out on here. So, you know, if you feel compelled to share your story, you can always reach out and let me know, and I can share it on here, because women, you guys, need to know that you're not alone. I promise. You know, I might look put together, I might have accomplished a few things or whatever, but I still struggle on a daily basis. And so autoimmune is near and dear to my heart. So it's really empowering. It was super empowering to know that I could impact my disease process and how I feel felt physically by the choices I was making every day. And when I chose to do things differently, I reclaimed my health. So I really want you to feel empowered. Share this with everybody. You know. So let me just mention my guest. She's super awesome. Her name is Margaret Romero. She's a nurse practitioner. She's Columbia trained. She utilizes functional medicine to treat chronic illness, autoimmunity, and women's health issues. She's been a clinical instructor and taught functional integrative medicine at Columbia University. She is the host of the Sacred Medicine podcast and author of From Flair to 25 things you must do to avoid your next lupus flare. So even if you don't have lupus, this is a good episode. Okay. All right, here we go. Well, welcome, Margaret, to the functional gynecologist podcast.

Thank you so much for having me, Tabitha.

I am really excited about this conversation because I feel like so many women are either diagnosed with autoimmune way more than when I was in medical school, or they are showing up like an autoimmune type presentation. Are you seeing the same thing?

I mean, it is all I see. I mean, I don't know if it's because it's my specialty, but it just seems to be this growing epidemic for sure. Autoimmunity in women. Absolutely.

Yeah. Why do you think that is?

Gosh, there's so many contributing factors. And I think that with gluten and glyphosates, toxins, environmental toxins, everything from Lysol to fragrances to all of these things, I think it just sort of breaks your body down and, you know, with. Then you throw in, like, your jeans and bad diet, fast foods and things just tend to, you know, easily go off the rails. We can definitely talk about some of the things that I've been seeing in terms of what I'm finding when I have patients who come to me with autoimmune conditions.

I would love for you to share with my listeners your story of how you ended up being diagnosed. And why do you think that all happened to you?

This was way back in 2006, and I had your typical lupus symptoms. Initially, it started with just like a sore wrist. Like, just my joint, my wrist. And then it would go away, and then it would go to a different joint and just like, what is going on? This is way before I was into, like, autoimmune or any of that stuff. And so it Progressed pretty quickly. And I was in the hospital and I had multi organ involvement, lupus nephritis, and with everything like liver functions through the roof, pleurisy, enlarged heart muscles and joint pain so severe, like I could, it was so hard for me to walk. I just ached from head to toe. Even like my movement of like my scalp would hurt. And it was a very, very hard time in my life, Very difficult period in my life. And I'll tell you, one of the first things that started turning things around and I knew that I was going to make it out, you know, and do a lot better was one day I went, I, at the time, actually my parents were taking care of me and so my mom was cooking. And after almost every meal I would notice that my knee joints would get really red and swollen. I'm like, what is going on? So I went to see the rheumatologist. This was right, like maybe a week after I was hospitalized, I was out and I was home. And I went to her and I said, listen, I really think that we need to check for like celiac disease because every time I eat I don't feel well. Like there's something going on. I want to get a gene test and I want to get this done. I think it's really important. And she's like, no, just save your money. You're not going to need any of that stuff. Just take your medicine. Which by the way, was 20 pills each day. I was a hot mess of time. Like my hair. You know, I'd wake up and there would just be like so much hair on my pillow. It would just, you know, you would just do this and it would come out. I gained like 30 pounds of water weight from all the steroids they had given me. It was just. And I didn't, I wasn't feeling any better right later and I'm a hot mess and I still feel like crap. And so after she said no to me, I found a way to get gene tested. Comes back that I have two non celiac gluten sensitive genes. And I was like, oh my God. And almost immediately I decided I became gluten free. I cooked books, I attended cooking classes, I went online. And at the time, gluten free was not as big as it is now. I did everything on my own. I just was determined to feel better. Within one week of being off gluten, the joints and my knees, the redness was gone. There was no more pain. I'm like, oh my God. Why didn't she want to Test me, though. I think that even if she tested me for celiac, even if she did the blood work, it wouldn't have showed up anyway. So I ended up, thank God I had this gene test that allowed me to see that I had these two non celiac genes. And so that changed everything for me. And after that, it took me a couple of years to really figure it out, because I would eat a certain way or take supplements, and I would figure out what was going on. I would draw my blood like, four, five, six, five times a year to, okay, well, I did this protocol, and then I would get blood work to see if anything changed. So aside from that, I was doing all of the functional tests as well. So that's. You know, we can definitely get into all of that. But the very first thing I discovered was that my body did not like gluten and that it was like. It. It was like the tipping point. Though I will say that symptoms began a few years before that wrist pain started. And I was having GI issues. I was severely constipated, and I'm like, what's going on? I would have to go to get a colonic in order to move. And it was so bad at the time, I did not know the connections as I do now. I just didn't. And so, anyway, I learned so much more. Once I did my stool testing and all kinds of other labs that they had never done for me that I discovered. I have no idea where I would be now if I just continued on their regimen. Yeah, I have no idea, honestly.

I mean, you probably would be in kidney failure at this point, right? On dialysis. My goodness, it's really scary. So, I mean, when I think of autoimmune diseases like lupus, Hashimoto's celiac rheumatoid, I think of them almost as the same disease process just affecting different parts of our body. Would you agree?

Yes, yes, yes.

So, so many patients and people get caught up in, like, figuring out their diagnosis so that they can get the appropriate treatment, because that's what conventional medicine has trained everyone to think, Right. Until you have that diagnosis, we can't give you the correct medication, when, in fact, I encourage patients to not wait until they get the diagnosis of, like, lupus. You know, if your ANA is positive and nothing else is showing up, let's intervene. Let's reverse this, right?

Absolutely. Oh, my gosh. Yes. I have talked about this so much on Instagram and do not sit on a positive ana. And the majority of my patients are being told that oh, you have no symptoms. There's nothing we can do. Like, come back when you start to have symptoms.

Right, Come back when you have the diagnosis.

Exactly, exactly.

Yeah. So can you talk about lab testing a little bit and what that looks like? I mean, I. I just want to intervene as soon as I see any red flags, even just symptoms. Right?

Definitely. Definitely. And even with a positive ANA and no symptoms, we are investigating this. We're definitely digging deep. And so whether you have a positive ANA with no symptoms or you have a positive ANA, all the symptoms in a titer of 1 to 12,000, 1200. I'm still looking in the same. I'm still doing pretty much the same testing. Functional testing.

Yeah. So explain to my listeners, like, what would that even look like when women are first starting to work with you?

Okay, so one is, I get the lab testing. And a lot of people come. They're like, well, I already had all my blood test with my rheumatologist. And I'm like, okay to diagnose you, but not to really find out what else is going on and what else is involved here. And so what I do is I check for, depending on the age and all that and symptoms, I always check for all vitamins, deficiencies, I'll check for. Sometimes I'll just do a quick heavy metal panel. Chronic infections. I'll check insulin. I just don't want any elevated insulin. I just do the gamma MTHFR and just checking to see where there is deficiency. Because typically people with chronic illnesses are very deficient. They're run down and their bodies are so depleted and they have very little stores. So that's where I start is blood work. And then the second thing is the stool testing. Comprehensive stool test.

Yeah, I couldn't agree more. I mean, so, I mean, we know autoimmune disease is activated through our gut, right? Can you talk about that a little bit?

Oh, my gosh, yes. So one of the things that, I mean, your immune system, like, if you want to worry about anything, let's just always worry about the condition of your gut because that will determine how well you are and how you know if you develop any chronic issues or not. And so I think it's so critical. I really wish that these stool testing was just sort of part of mainstream. Like everyone just gets them. It's once a year would be amazing. Do you know how many people would not be so sick? The thing is, is that there's also. You kind of need to know how to read the test. If you don't know about, you know, the different types of, like, firmicutes or bacteroides then. I mean, my brother's a physician, he's an MD And I showed him results one day because I wanted to just see. So I gave him a piece of paper. I'm like, hey, look, do you know what this is? Do you understand what these words mean? He's like, no, I don't know what that is. And so you need to have someone that's going to know. Plus, he wouldn't know about some supplements. And so it's. It's not the type of stool test that you would go to, like west and submit your stool. It's exactly.

I hear that all the time from patients. I had the stool test, you know, and what they had was a fecal occult test for blood or maybe calprotectin level. But you did not have your microbiome evaluated, your digestive function evaluated, your system. You know, I mean, those are all key processes in whether or not you can control your autoimmune disease, right?

Absolutely. Absolutely. Or they'll do a stool onpoint ovin parasite, but those aren't. That's someone looking through a microscope and looking to see if they can find anything. And you're really not going to get much if you don't have. I mean, do you imagine how like you have 150 samples you have to go through and you're the person looking under the microscope. Do you really think it's going to be that accurate? Absolutely not.

Right, Right. With all the stool that's in you and you give that one little sample, you very well could miss a parasite or a worm or. Yeah.

Oh, yeah, absolutely. Yeah. And it doesn't tell you, like you said, microbiome or anything else, honestly. So. Plus, even if they. I don't even know if they look for H. Pylori in ONP is on.

No, they don't. No. So that is usually done by a breath test. And at least where I live, you have to beg the gastroenterologist to order that kind of stuff. Yeah, it's very sad how stuck in their ways they are, you know, but it's be, you know, it's a broken system. It's driven by insurance. If it's not covered by insurance, they don't want to. They don't want to order it. You know, they don't want to deal with the rejection and explaining to the patient. It's just easier not even to address it at all. And so we need more people like us to, you know, you know, break out of the system and help fix it, because it's. It's not serving our patients.

No, definitely not. I mean, and going back to what you were asking before, I'd say about 90, 98 of my patients have gas and bloating or have had IBS or ibd, which I think are just a diagnosis of, like, I don't know what it is, but you have diarrhea. Constant. The patient. You have ibs, and it's not really. But why. You know, no one's ever asking, well, why do I have this? And so it's just the gut is one of the most important things, if not one of the most important things, if you have.

Okay, so you are looking for all of those different systems. Thyroid adrenals, blood sugar. You're looking for vitamin and mineral deficiencies. You're evaluating the stool for gut, function and balance. And, you know, what are the big differences of how you would approach beside the testing? Like, when you're talking about, like, here's your treatment plan. How is your approach different than a conventional practitioner?

Okay, first is that I don't look at reference ranges. You know, it's unbelievable. You know, you can have someone with a B12 level of 300, and that's within normal range, and that is not optimal range. I think functional medicine providers, we look at optimal ranges. This is where you need to be. I don't care that the reference range is this big. This is where you need to be. And so I think that's first and foremost when it comes to the biggest differences. There a thyroid. Someone comes in and they're like, oh, no, 4.0. It's within the reference range. I'm like, that's not good. I think sometimes some reference ranges even go up to five, I think, oh, yeah.

Where I live, it's up to five. And I say, do you feel good? Do you think you're in the good range?

Right.

And the answer is no.

Right. Right. Yeah. So that's one big difference, is that we. I look at optimal ranges, not reference ranges. I also, I don't. I don't write prescriptions. That's not my go to. I can if I want to, if I need to, but that's not where we start. We're not like, okay, let me just write a prescription for this. I'm figuring out what's going on. Almost everyone is vitamin deficient. So that's one of the things that I look at. And. Because how can you. You can't be depleted and then try to heal I mean, it just doesn't work that way. And so trying to figure out all of the deficiencies, getting that, getting someone on the supplements that are needed. My, I mean, my brother, he said to me, he said to me, when he was, they do this once every six years. They redo some tests or something.

Yeah, their recertification, he said.

Yeah, he was laughing. He's like, they told me at this, he takes some, some course to pass that test or whatever. They told me in the course that if Coq10 was ever part of the multiple choice, that it's never that, like, that's never the answer. And so I was like, okay, you don't Even know what Coq10 is for. So there are ways, and there are supplements and nutraceuticals to help not only bring balance to the body, but also really enhance vitality and bring back energy. And that's not where conventional medicine is. They're more like Vyvanse. Oh, you want some energy? Let me give you some Vyvanse. Which is just like modern day speed.

Yep, exactly. Oh, my goodness. So, you know, you're going down this path, you're making these changes. Tell me, is there one diet that fits all for autoimmune, especially lupus? Are there some definite, 100%? This, this is how it is?

Well, for me, for me. And from what I have seen in my patient population, and I do test for gluten sensitivity. And so we start there. Almost everybody is. But I usually have them take gluten and dairy out for at least nine months. Honestly.

Yeah.

And so there is the autoimmune paleo diet, which is also out there. And I think that's pretty good too. I just, you know, if a lot of my patients are like very deficient, I just, There are some key foods that I'm like, okay, try not to do like so much eggplant or peppers, you know, or potatoes. But sometimes I've got people who are very. They're so thin and depleted that I don't want to take out too many things from their diet. But gluten and dairy are definitely the two big ones. And if after a while they start to feel better, they can slowly introduce it and just see how they feel. I will tell you, though, that the majority of them do not feel good after they consume it, after being off it for a while.

Yeah, for sure, without a doubt. And so they remove the food triggers. They're trying to eat, nourish themselves. What else are you having them do to really get this autoimmunity under control.

I also look at food allergies, you know, to see there's a couple of indications I notice in the blood work. If I notice really low cholesterol levels and they're not on a statin, then they have. To me, they have leaky gut. Anything less than, like, 150 or less, you have leaky gut. And so typically, a lot of people have leaky gut syndrome, permeability issues, and for who knows how long, they've had it because they've been sick for many, many years. So if that's the case, what I also see is a long list of food sensitivities, you know, so I try not to get food allergy testing right in the beginning when we start working, because there's just. There's just gonna be reacting to almost everything. And I find that if they see something like that, they get really. They feel very defeated in the very beginning. So I try not to do food allergy testing in the very beginning.

Okay, good. And what do you think is the biggest shift changer? Is it the diet? Is it the supplement, repletion of your vitamins and minerals? Is it something else? What really gets women feeling better?

That's such a good question. Well, one of the things I do. So it also depends on, like, let's say they come to me. Well, a lot of them come to me with fatigue. It's like one of their things. So I try to get them on some supplements that will start them, giving them some energy. So they're just starting to very slowly start to feel better. At the same time, we're removing gluten and dairy. We're giving you, you know, and you. You cannot be vitamin D deficient if you have an autoimmune condition. And so I'm putting them on some really good supplements. I'm changing their diet. When people start to remove gluten and dairy, it doesn't really take them that long to start feeling a lot better in their body. Yeah. So once they start seeing and noticing some nice changes and their body's getting actually the nutrients it needs, it really doesn't take that long. But it is a combination of things. I feel like in the very beginning, once the initial consultation, I get some blood work back. While I'm waiting for the stool to come back, I'm putting them on some supplements for sure.

Yeah, definitely. I mean, I know personally for myself, having Hashimoto's, that I have always struggled to, you know, have with IBS and with chronic pain and all of these Issues and really getting rid of gluten was life changing. But I could never figure out why I couldn't get my vitamin D levels up, why I couldn't get things repleted. And it was because I needed to heal my gut. And then I also did genetic testing and found out that I have three different mutations for my inability to make vitamin D if I'm outside in the sun and absorb it. And so I think us really understanding ourselves as individuals is key because I realized I need a lot more vitamin D in a different form to be able to even absorb, but I needed to heal my gut first. So I. I love your approach to this because I think that is the only way that you can really get control of an autoimmune process, you know?

For sure, for sure. So how. Go ahead. How much vitamin D then, did you need to take?

So I did 50,000 IUs for like a week, and then I was doing 10,000 IUs. And, you know, for a couple months, I fluctuate. I'm not the best supplement taker, I'll admit that. You know, I go in waves. I do my best, and I definitely can empathize with my patients because sometimes you get feeling like it's a lot, you know, but you have to remember why you're doing it. And when I stop taking it, I don't feel well. And so then I start taking them again. So, you know, I would say that I'm usually in the 5,000 to 10,000 a day range. Living up in Michigan, I rarely see the sun, you know, and when I do, you're supposed to wear sunscreen. I don't usually, but I don't make the vitamin D that I need. And so I, you know, I thought that was a really interesting piece of my own information that I learned in my journey.

Yes.

I think that so many women just need to talk about their autoimmune journey because it can have so many different pictures and so many variations, right?

Yes. I mean, I have. Anyone, you know, like Hashimoto's or. I mean, there's such a variety of different autoimmune conditions, and with that there's just so many symptoms. And so, you know, I just. I feel like there's. But I also see a combination of things. I see celiac and Hashimoto's. I see lupus and Hashimoto's. I see lupus and celiac. And so, you know, leaving you a little more susceptible if you have one, to have another one.

Yeah, for sure. So if someone hasn't been diagnosed with any of these actual diseases yet. But they feel like I must have an autoimmune issue going on, like because I'm having chronic fatigue, unexplained joint pain, muscle weakness, things like that. What do you recommend they do first? Should they go after testing and try to figure out that diagnosis?

Well, first I would probably do an ANA and an anti DNA to see if they actually have an autoimmune condition. I do have a lot of women who come to me who are just like, I don't feel right, like there's something wrong, something's off. And they haven't had blood work or they have just like a cbc, a CMP and a urine dip and we found nothing. You're fine. Which is not because nobody is actually looking, you know, in the right places or doing a very in depth lab work to really, you know, know what's going on. So what I think most women, when they come to me and they feel like that and they have not had any testing. I do test for ANA and anti DNA and everything else that I initially talked about because I need figure out, well, why is she so tired? Why is she so off? And so I do, you know, check hormones and for toxins and nutrient levels and it gives me clues as to what's going on and what the next step would be.

Awesome. And say they go through all of this process, they're making all of the changes. Do you ever see women who just aren't getting better? There's something deeper that you haven't really uncovered yet?

Yes. One of the things that I have in the past year and a half or so discovered is mold. And I think that that can sometimes be the missing piece. When people aren't getting any better, you have to think mold. And so I've started doing routine testing now. You can even just check it in the blood too, or you can get a urine test as well to see which mold species, you know, do you have which mold toxin. So I'm starting to do that more and more now. And some people say I don't have any, you know, there is nothing. I don't smell anything, I don't see anything. But that still doesn't make any difference, right?

Exactly. No, I see that as well. It's like you can really get, get the majority of the patients feeling better with the diet changes and the supplements and, you know, balancing out their other systems. But there's always, you know, I don't know, maybe 10% of women who you need to get deeper, you need to get rid of their heavy metals, their toxic burden, their mold exposure or chronic Epstein Barr virus, things like that. I see a lot of chronic viral infections. I see recurrent shingles outbreaks, that whole thing. Do you see that as well?

I've been seeing that so much. And young in young women too. And so chronic infections are just pretty norm, I mean, considering. But it's never checked. Those are things that are also never checked.

Yeah. That's why I encourage women to step away from conventional medicine and find yourself a functional practitioner, integrative, some. Someone who is thinking outside the box, who's doing testing that isn't covered by insurance.

Right, right, right. Sometimes you can, if you have the appropriate diagnosis, it'll be covered. Sometimes it's not. You know, they just, they just don't cover some things. But.

Right. I just don't want women to not get evaluated and properly treated because it's not covered. I don't want them to be stuck in that mindset, take care of yourself because the doctor isn't, you know, ordering it, that type of thing. I see that quite a bit. And you know, we just have to take ownership of our health and what's happening to us. Right.

Oh my gosh, so much. And you know, also what is the deal with women who are requesting certain blood work and their doctors like, no, they won't do it.

Yeah.

What is that? Why? It's like you're ignoring what they want. Why are you ignoring what we're asking for?

Yeah. Well, I've worked alongside doctors like that and from my best understanding, it's because they don't know how, what to do with those results and they are held liable and responsible and they wouldn't know what to say to the patient when the test came back, you know, and so I think that's a huge frustrating piece for some women is they for so long haven't had other options. But now, like you and I, we both work virtually. So really that barrier is gone. You can see anybody anywhere and get the help that you need. So I would love for you to tell my listeners, like where to find you, how to work with you, all of that good stuff.

Okay, so my website is Margaret Romero.com and I'm on Instagram every single day. And because food is like my obsession and gluten free food in particular, I'm on Instagram every single day, which is Margaret Romero on there. And that those are like my two biggest places where I hang out. So Instagram too, especially.

Awesome. Well, I'll have all those links in the show notes, because women need to connect with you. You know, they need to take back control of their health and really figure out what's going on with them, especially if they already have a diagnosis like lupus. I mean, you. You got to get control of that, right?

Oh, yeah. Yes. Yes. Oh, and I also have a podcast, how can I forget? The Sacred Medicine Podcast. And on there, I do talk about all women's health, functional medicine, and definitely lupus, too.

Awesome. Well, thank you so much for everything that you're doing for women. It's just fabulous and your wealth of knowledge. So thank you.

Thanks so much for having me.