Sjogrens Syndrome and Treatment: What Women Need to Know | Dr. Kara Wada

29:13Drops are in the tablets that are FDA approved that do go under the tongue are not perfect either. They require folks to continue to take them daily for, again, three to five years. And if someone has mouth irritation, itching, swelling, or they're just frankly not great at remembering to take something every day, that still may not be the best fit for them, but they could do it at home. And it's a bit safer. That's why we're able to do it at home rather than in office. So I think there's trade-offs. I think what I'm even more excited about, and frankly, really kind of, you know, another turning point kind of in my practice was learning about something called intralymphatic immunotherapy, which essentially speeds up the process from three to five years to eight weeks.

30:00Oh, wow. It's three injections. There's an ultrasound to direct the allergen and a smaller amount of allergen directly into the lymph node. My question when I learned about this And I saw the data that was pretty darn consistent with effectiveness that you see from regular shots and sublingual. I was like, why isn't everyone doing this? I learned about this treatment in 2014, 2015 from some researchers in Switzerland. Again, Europe, kind of, you know, pushing, you know, the innovation. And the speaker and innovator, Dr. Thomas Kundig, who was speaking, said, the problem is there is no financial benefit for anyone to offer this.

30:43The companies that make the allergen, we would use far less of it, right? Because there's fewer doses, there's less amount in each dose. The little ultrasound companies, they don't care. Like, you know, a few allergens, that's not going to move the dial. And even frankly, within an allergy, a traditional allergy practice, shots are covered by insurance and they're reimbursed, or at least traditionally have been reimbursed fairly well. And that frankly is a big part of that business model. And so it's like, gosh, if we have a treatment that might actually be safer, it's faster and the efficacy looks right on par.

31:24What are we waiting for? Yeah. And really, you know, we're just now starting to see a bit more of, you know, build in and people realizing this exists, wanting to get trained in it and wanting to be able to offer that to their patients. It's just been a slow burn. Yeah. Again, I'm waiting for the others to come in and pretend that they party. What you just touched on, though, gets called a conspiracy theory. Anytime anyone brings it up, that there is financial incentive within the U.S. that obstructs our innovation in medicine, our improvements. And when you look at why would Switzerland? Well, if you have a country that is taking people's taxes, paying for their health care, you're going to be incentivized to make that as cheap and as efficient as possible.

32:15Hey Chicago, class it up with Crocs. You know back to school is coming in fast. So why wait to find your new fave footwear? Step into a local Crocs store and step into your new look. Try it, style it, make it yours. Because the right pair doesn't just show up, it shows off. First day fits, handled. Walk out ready for whatever's next. Visit your nearest Crocs store today. when you look at a for-profit healthcare system, which is the United States, how can you tell me when capitalism is the rule of healthcare that financial incentives are not being considered? Of course they're being considered.

33:00But for you to bring that up, I'm like, man, that is something I see all the time where people are like, no, like that's, that's never at play. And pharmaceutical companies are not doing that. I'm like, they're a business. They're business first. And in fact, there's irrefutable evidence out there. So if you are evidence-based, why don't you look up, like, why don't you look up lawsuits and case law and what's been won? Because it's absolutely all been financially driven. So it's not, it shouldn't be controversial. It should be something that we are able to talk about. But right now there is a huge push of like, we are never to question pharma.

33:37They are never doing anything. And even clinical practice and where I want people to really not get this twisted is thinking it is the doctor because often they're like, it's the doctor who's greedy. And I'm like, we got to back this up. There's healthcare insurance and then there is healthcare admin. And these are the people pulling the strings of the poor doctor who would often like to do better by you, but they're stuck in this financial paradigm. I'm just envisioning that chart that shows the growth in admin salaries or overall costs compared to physicians, nurses, cost of treatment, those sorts of things.

34:16And frankly, even within academia, you know, a place where you would hope that perhaps there's a little insulation from that. Unfortunately, that's not necessarily the case. And that's in large part why I ended up having to change gears kind of from what I anticipated my career trajectory might look like. Because it got to a point where, frankly, I was making a third less than my peers because I really enjoyed caring for those patients that didn't read the textbook. And those conversations took longer. And our current setup for how reimbursement works, that means that you generate less revenue for whoever you're working for if you're working under an insurance-based model.

35:09Yeah. And you bring up academia, it has the same problem that the healthcare model has. I remember protesting alongside the teachers when I was an undergrad because the teachers were told they couldn't get a raise, but the president received a 400 % increase in his pay, something like that. And that's what we continue to see. And that is why college is so expensive in the United States. Why is healthcare so expensive? look at the overhead of the admin and what they're being paid i want to go back to this uh injection therapy you were talking about that you learned about um so you're injecting straight into the lymph node explain to people why that works and and what's actually going on there what a lymph node is actually yeah so when we think about our immune system um there are organs that are a part of our immune system and lymph nodes are kind of like the meeting places i think of it, a place where our immune system cells, especially our T cells and our B cells are speed dating.

36:10So if we receive a vaccine, if we're trying to fight off a cold or flu infection, if we receive an allergy shot, that protein or that bit of protein that the immune system has recognized and is trying to make a response to is brought back to the lymph node. And that's where the speed dating process occurs. when that match is made and it's a good match, then some factors change and essentially that immune system matures or responds. So as you're fighting off a cold, for instance, you may notice that you have swollen lumps or bumps in your neck. Or I know, for instance, kind of when we were in the midst of the pandemic, it wasn't uncommon to say, hey, I got my vaccine in my arm and now the lymph node under my arm is swollen.

37:00So when we do more traditional allergy treatments, shots that go under the arm, drops that go under the tongue, some of those immune system cells are essentially capturing the allergen and bringing some of it back to the lymph node. That's where that change is happening. If you inject allergen directly into the lymph node, if you can visualize that using an ultrasound, you can see your needle going in, you're cutting out the middleman of the immune system and it's working more akin to how a vaccine response may work. So you need much fewer injections in order to get that good response and that lasting response.

37:40There's actually some data out of the initial group of patients that they treated in Switzerland, which goodness was over 20 plus years ago, they went back 19 years after their initial treatment. Half the group received traditional allergy shots. The other group received this new interlymphatic immunotherapy, and they found as many of the folks they could, a little easier to do that in a government-run healthcare situation, and they compared. And there wasn't much difference between the improvement people saw and the lasting improvement that was documented between those who had regular standard of care allergy shots and the lymph node-based treatment.

38:26So it's pretty cool. Yeah. Any risk for people with autoimmune disease? Not that we're aware of. I think when anytime I'm talking with any of my patients that has what I lovingly refer to as a misbehaving immune system, whether it's allergies, autoimmunity, even immune deficiency. Anytime we are introducing a treatment of any kind that may affect our immune system response, there is always a potential that we could cause a flare. I think the biggest thing that we need to talk about is what are your individual risks? You have that shared decision-making conversation and see if that feels okay. If it feels like, you know, saying that my family has always loved it.

39:13Is the juice worth the squeeze? Does that feel okay and comfortable with you? That there may be that risk of flare, but this is what we're hoping. And, or are there some things that we may do to try to prevent the symptoms from flaring up? Generally, I want to make sure that someone's under good control. If they, you know, have allergies that are woefully or asthma that's uncontrolled, we want to get that under better control before we go introducing something that could stir the pot. Autoimmune disease is on the rise and it's primarily affecting women. What do you wish that every woman knew to prevent autoimmunity?

39:48Goodness. I think one is that we do the best we can and we do that with whatever bandwidth we have. And even if or when for some, you know, that percentage of us that will end up with a diagnosis to let go of that self-blame, I think that that is really critical. So some things that can be helpful, trying to keep the diet broad, to listen to any signs or symptoms that your body may be sharing with you that to me, I now recognize is the potential for precursors. So change in digestion, symptoms that may be called irritable bowel syndrome are things that I think about. If you are having more skin rashes, if your energy level just seems totally different than where it was.

40:41These are all early signs that I look back to even when I was in college and think, oh gosh, I knew then what I know now. Now, frankly, I don't know if I would have done things differently because I was 18, 19-year-old. There are some things that we know can increase that gut permeability. So excess alcohol, excess non-steroidal anti-inflammatories, so ibuprofen, those sorts of things. I think what's hard is in telling folks to listen and to trust their body that also, given the healthcare system and what we've talked about, opens up that potential for them to not have that witnessed. And that worries me, right?

41:27But I think that first step is really to listen to your body, to take heed, and coming back to that self-compassion that we talked about earlier. Yeah. Yeah. I, this next question, I'm going to ask you this. I want this for people who are struggling with autoimmune disease, endometriosis, any of these invisible illnesses. I want to ask you this question because if they have someone in their life who's dismissive and not supportive, I want them to give them this, this clip. So you don't look sick. Almost every patient with autoimmune disease has heard that from someone at some point. Why don't people look sick and what do people need to understand about autoimmunity?

42:12Well, first and foremost, we don't have, you know, it's not like we have a badge we're wearing or, you know, or something that visually provides that recognition, right? The other piece of it is these symptoms can wax and wane for years. And frankly, I have to say, you know, and again, this is coming from my own lived experience, but I hear this from countless patients and others in our community, too, that we're strong. We try to put on a brave face. And we keep pushing until we can't. And I think some of that is cultural. I think what's hard, and I don't know the right answer to convince people to believe someone's lived experience.

43:02I think it truly is going to take a momentous culture shift. And I hope that we are in the midst of that, having more conversations like these. from what I hear and see in our newer medical trainees that, you know, these Gen Z docs in training, health professionals in training, have a different attitude and are really, I think, going to be powerful in this change too. You know, the thing about most of the disabilities affecting people is that they are invisible. and I think that there is always this notion that if it's a disability or it's a disease then it should be apparent. There's also been studies to show that people have more compassion for someone whose disease they can see than those they can't see.

43:57They think if you can't see it then you should just suck it up and as we're talking about autoimmunity there's things like lupus that maybe you'll have a rash on the face that's very telling. Most common autoimmune disease affecting women, which I also have Hashimoto's thyroiditis, severe fatigue, hair falling out, constipation, feeling cold, having joint pain, depression and anxiety. These are not things that you can see visually. You might see the weight gain that comes on, but what does that come with? Stigma and judgment because you're a woman. Why are you taking up so much space? How dare you?

44:34You need to shrink your body. Society says you need to be a certain size to have any value. When you lose the weight and they reward you and you're just as unhealthy or maybe even in a worse place. I mean, I recall in my own journey of kind of going down the rabbit hole of the super restrictive elimination protocol, I was the skinniest I had been since my teens. And of course that came with significant, you know, Oh, Kara, you look great, you know, from aunties and mom and, you know, and everyone. And, and yet I was probably the unhealthiest I had been. Yeah. And so many mentally and physically at that point.

45:18Yeah. You see this with Crohn's disease, you'll see it with IBD. So inflammatory bowel disease, celiac disease, these people who have gastrointestinal issues that are causing weight loss and they feel horrible. These diseases are horrible. And people are like, you look fantastic. They're like, I don't feel fantastic. You're wasting away. We love this for you. And it's something that we have to start shifting in society because as you said at the top of this, your mental wellbeing, how you talk and perceive yourself has such a tremendous impact on your immune system. You've brought up the elimination diet a few times.

46:00Do you recommend this? I think it can be helpful. I also, it's like holding two things, right? It's not always or, but often it's and. It can be helpful. And also I think you need support and someone to help provide some guardrails because it's not a long-term solution. We know long-term the best benefits come from the most broad and diverse diet that is reasonable, you know, given how your body's responding. The other thing though, that is hard is that we don't have all of the testing modalities that would make things very easy to say, oh gosh, well, you know, I need to avoid X, Y, Z. And so sometimes we do need a period of time where we are steering away from dairy or steering away from eggs or soy, what have you, gluten for sure, to determine does that make a difference or not?

47:00And if it does, then perhaps that's worth staying away from for a bit longer. And then, you know, as you alluded to earlier, the potential that we know the microbiome changes and evolves, our gut health can heal and improve over time, that then over time, we may be able to have some of those foods from time to time or, you know, in certain amounts and it not be a problem long term. I agree with you. I always have framed it to patients that if we do an elimination diet, it is for a finite period of time. The least amount of time necessary is always my goal because, you know, we see sometimes people are on the autoimmune protocol.

47:46that can be fantastic. But some things people are so scared to go back to foods. And what I say to patients is the goal is that a healthy microbiome, a healthy gut and a healthy immune system can tolerate any food coming in. If you have allergies, that's a different story. But when you have food sensitivities, our goal is to work back to that you can then have those foods. And maybe you're someone who's like, if I binge dairy, I'm going to have a problem. Lactose intolerance is different than having a food sensitivity. But you might be someone who's like, you know, if I do too much corn, I'm not going to feel great.

48:23But I know that I can have corn on the cob in the summer a couple nights and like that's not going to be problematic. And so I think I love your perspective. Definitely we need diversity. We need variety in the diet. You brought up gluten. That is still a controversial one where doctors say it does nothing, yet patients are like it's doing everything. so let's talk about it. Hey Chicago, class it up with Crocs. You know back to school is coming in fast. So why wait to find your new fave footwear? Step into a local Crocs store and step into your new look. Try it, style it, make it yours. Because the right pair doesn't just show up, it shows off.

49:07First day fits, handled. Walk out ready for whatever's next. Visit your nearest Croc store today. Yeah, I think one thing that I always advocate for is if you are considering a trial of gluten-free, that the potential for celiac disease be explored before you take it out, because that has long-term implications in regards to whether you would want to reintroduce or not. It also has implications for family history and family screening as well. And insurance coverage if you have to eat a gluten-free diet. Absolutely. Yeah. And so the reason is that if we're doing blood work, which is typically kind of the first-line screening test and much less invasive than an endoscopy or a scope where they would look at your small bowel and take a little biopsy, those labs can turn normal or normalize with gluten avoidance.

50:07And actually, you want them to. We would want to capture that before they turn normal so that we could better know what's going on. And I think, so that's typically my first point of advice. When I'm thinking of particular elimination diets, you know, it somewhat depends on what's going on with that patient and getting an idea of what their diet looks like too. Say I have a patient with an allergic condition called eosinophilic esophagitis or EOE. gluten's up there on my list, but actually there's a higher rate of dairy that's driving it. Even when dairy allergy testing is negative, about a third of the time, if you pull dairy protein out, those patients will have significant improvement.

50:51So there's a little bit of that that comes into play. And then asking folks, you know, how do you think this might go? You know, exploring kind of and having them try it on, you know, rehearsing kind of in their brain as to how they think that might look. For some families, it's not something they care to explore. Others, sign me up. Let's do this. Like, I really want, you know, to take this more lifestyle-based approach. I think the other thing that's really important in, and especially with working with nutrition, you know, those that have more nutrition background, my dietician colleagues, you know, other folks who have that nutrition education background that's more extensive is thinking about and making sure we're not running into any nutritional deficiency when we're making these big dietary shifts.

51:44And then with gluten-free, I think the other trap that we can fall into is substituting, you know, one, you know, gluten-free pasta for regular pasta. and often nutritionally, it's not, you know, it's not that great of a swap. And so what I tend to encourage is saying, hey, if you're really going to try this, let's also try to switch to, you know, some options that are more nutrient dense, that have more of just vitamins and nutrients and other types of whole grain fiber, non-gluten whole grain fiber. And let's see how that goes and see if that can help kind of switch up some of the patterns that we get into with like, oh, a sandwich for lunch, pasta for dinner, you know, kind of being able to try some other recipes and things on for size.

52:35Chickpea pasta, everyone. If you're going to go going free. Start with a small portion, though, if you're not typically used to eating beans. Yeah, if you're not a fiber first kind of plate, definitely. I know I feel like every time I do a podcast episode where I'm talking about eating fiber. And then I'm like, I'm always being like, but if you're only eating like five grams a day, then you're only going to increase by like five more. And you're going to do that for a week. And why are we doing that? Because your microbiome is going to shift, your digestion is going to shift. But I'm always like so cautious because I'm like, I don't want anybody to be like, now I have horrible gas or I'm really constipated and I hate Dr.

53:14Brighton show. Like, yeah, we don't want that. You know what I think of, do you remember those infomercials with the different exercise programs that we grew up with, like Taibo and like P90X or whatever they were. And you, you know, you like jump into some hardcore routine and then you couldn't walk for like days afterwards. I think about that with dietary shifts. We are so much better off for the long-term and for sustainable change by doing what you just said, small changes, they add up over time. And frankly, they're more comfortable. They're more pleasant. It's like, you know, picking up the two pound weight, getting good with that, then moving up to three, maybe pushing it to five and doing that gradual step up that is going to allow your body and your microbiome to adjust and to make those shifts.

54:06The commercials of the 90s, the fitness commercial you're talking about is now the sensational influencer of social media who's like, because that's what the algorithm will show you. So as we stay here and we talk about nuance, like the algorithms and be like, shut it down. Like we want sensational stuff of like, just change everything. I have very few patients. I would say like maybe 1 % of patients, like they get a treatment plan, they jump all in, they do it all. And they're like doing great. Most of the time, somebody who's like, I'm going to jump into this diet 100 % after two weeks, they're like, I'm out.

54:40I'm done. I can't sustain this. So I always talk about like, first take a week to look at it. Put it on your fridge. Every time you go to the fridge and you're opening the fridge, you're looking at what's going to change. What's going to change? Start wrapping your mind around what's changing. Then the next week we start to introduce things. And I actually like to do like five day like thing, you know, at a time, like little trials. So for like, if just five days, you can eat a serving of cruciferous vegetable. And what I find is, is that after five days, they're like, I'm doing this more and more.

55:11It's easier to adopt. There's something about five, like with only ADHD people, I'm like, just say like, I'm just going to do five minutes. I'll just do five minutes. And odds are you'll start and then you're there for 15 minutes. Fantastic. That's 10 more than you thought you would get. But like, you know, it's things that like when I was a group fitness instructor, I'd be like, can you just do five pushups? Like you can do anything for five. There's something about that mentally. I have not seen any research, but I see it works all the time of like where people are just like, I can do anything in an increment of five.

55:45Like I can, I can do that. I think it gets you through the work week too, which also just from that kind of, you get in that routine and then it's easier to keep it up. Yeah. Oh, Monday's here again. All right. Back at it. With gluten and specifically autoimmune disease, what do you see in terms of it triggering autoimmunity, perpetuating autoimmunity, and being part of the healing journey of removing it? I think the evidence is still a mixed bag. Anecdotally, I certainly have a number of patients who have shared with me, gosh, that was a huge game changer and really moved the dial for me in, you know, XYZ gut health, joints feeling better, energy better.

56:29I also have just as many, if not more that have said, yep, I tried it. And frankly, it didn't make a difference. And I think that's where this individuality comes into play. We are, you know, at our core, we have our genetic code and that gets turned on and turned off by what we now understand are these epigenetic kind of signatures, the on and off switches, you know, impact us from the time that that egg is even created inside of our grandma and, you know, through our lifespan. It's influenced by our microbiome, by the food we eat, by our lived experiences and about all these things, right? And to think that there's a one size fits all solution that's going to work for everyone, I think is kind of short-sighted.

57:17We even see this across hormonal shifts over the lifetime with, for instance, there's always kind of this rule of thirds that's talked about with inflammatory conditions. It's asthma, lupus, Sjogren's, rheumatoid arthritis, what have you, that as a woman goes through puberty or goes through pregnancy, in particular, a third of patients will stay the same, a third will get worse, and a third will get better, even if they have that same underlying diagnosis and are undergoing generally a similar pattern of hormonal shift during those times. And so I think that's where diet individuality plays into.

57:58Yeah. And as you're talking about this, it's an important reminder for people to understand that your diet is never meant to be static your entire life. You meet people, like right now, we've got like carnivore versus vegan, which is just, you know, they're each just a side of the same coin of like very restrictive diets. I know the vegans are going to come for me, but it doesn't change the fact that like it's a restrictive diet. And if it's because of your belief system, I will always support you in that endeavor. And I'm not judging you. Okay. But when we look at this, it's like, you know, I've had patients who get really frustrated because they have to change their diet.

58:35I was a vegetarian for 10 years. I developed autoimmune disease, I could not manage blood sugar stability. I could not on a vegetarian diet anymore. And I, you know, was, man, the food pyramid like really messed me up. It really, it really messed me up. Whenever people are like, elimination diets cause orthorexia, oh, all this wellness stuff. I'm like, can we talk about the food pyramid? Because I was really messed up in the early 2000s. Like my diet, like I was eating six servings of grains, but having like inflammatory joint issues, like not being able to walk some days, like all this joint pain, not being able to like move my fingers, grip weights.

59:13And like, I still ate the six servings of grains a day, even though it made me feel like trash. Right. Because one size fits all. And the government gives us one size fits all. Medicine gives us one size fits all. Wellness gives us one size fits all. And so I really want to echo your message of like, it needs to be that end of one. You need to ask what's true for you. So I want to shift the conversation because you brought up Sjogren's disease. How many women are affected by Sjogren's disease? So it is estimated that there are somewhere between one to four million Americans with Sjogren's disease.

59:47And somewhere around half of those individuals are not yet diagnosed. Of that total number, 90 % of those patients are women. And, you know, I think what's really profound is that Sjogren's is one of the most common autoimmune conditions. It is right behind Hashimoto's. It is right behind rheumatoid arthritis. But most people listening maybe have heard of it, but really don't know exactly what it is or, you know, maybe frankly haven't heard of it. I joke that in part, it needs its own PR. You know, it needs it. It's named after the doctor who described it. And frankly, sounds like the name of a chair from Ikea.

1:00:38It's hard to spell. It's hard to say. It's hard to build. Yes. Yes. And there's a lot of myths and misperceptions that are perpetuated through, frankly, through medical education about what it looks and feels like. And I think that's in part what has led to this big gap. There's some really great data out of the Sjogren's Foundation that shows that that diagnosis gap is narrowing. We're down to taking about three-ish years now for the average patient to be diagnosed. Got endometriosis beat, go Sjogren's. I know. I do wonder, though, when you look at some of the data with a little more nuance and you look at the survey responses of like, well, how long did you actually have those symptoms going on?

1:01:30Majority of patients are saying they had symptoms dating back to teens, childhood, early adulthood. childhood and so I do wonder you know is that that three-year mark from when someone made that self-diagnosis yeah and that self-recognition and then finally had the validation rather than looking back because personally when I look back and see some of those breadcrumbs along the way I see signs and symptoms that are suggestive or at least were leading me down that path back to high school and college. Yeah. We see the same is true with a lot of women's health conditions, which Sjogren's for all intents and purposes is a women's health condition when it predominantly is affecting women.

1:02:16But just like endometriosis can affect any body, PCOS, we now see there's a male version of polycystic ovarian syndrome, bad name because they don't have ovaries. So we got to figure that one out. I mean, it's a bad name for women as well, but you know, we take PCOS as an example. Women had symptoms. It's usually when they self-diagnose then it takes two to three doctors before they get believed with endometriosis women had the symptoms the entire time they were living with it and then it takes seven to ten years of advocating and that's the worst thing i think about being sick and then having to fight just to be heard that you are actually sick let's go through the breadcrumbs though because i think it's important for anybody listening, if you have ovaries, odds are you're going to develop an autoimmune disease, unfortunately, is what we're seeing.

1:03:07If you've got the genetics for it, you've got the family history, like the environment that we live in currently is kind of just set up right for the development of autoimmune disease. Perfect storm. Perfect storm. And with that, if you already have an autoimmune disease, we know per the research is that when you get diagnosed with one, you actually usually already have three. I'm someone who didn't, so my breadcrumbs of having this joint pain in my, you know, teens. I mean, I just had a lot of like health issues that I struggled with as a kid because of all these gut issues. That is what it started with.

1:03:41But I, you know, forever thought, oh, I, I, like it was Hashimoto's and it turns out psoriatic arthritis actually is what you had and nobody caught that. So want to talk about those breadcrumbs that people should be looking out for when it comes to Sjogren's disease. And then we can maybe expand it more broadly to autoimmunity. We look by numbers. So dryness is kind of the, we call it the pathognomonic or kind of the test question symptom that is most connected with Sjogren's. And when you say dryness? Dryness of the eyes. We don't talk about it as much, but the nose and some sinus issues can go along with that.

1:04:24It's all interconnected. The mouth, dental changes, increase in those cavities and crowns that you need at the dentist and vaginal dryness. That often, though, is not what a woman is going to her doctor to talk about. Frankly, typically a patient with Sjogren's has bigger fish to fry, you know, or things that they're going to bring up, which are fatigue and body pain. So often a lot of similarities and overlap with fibromyalgia. Which is I would put in the same bucket as IBS. Yes. It's like, oh, we're just going to call it fibromyalgia. And it's like, hold up. What else is going on? Yes, absolutely.

1:05:09In majority of patients, there are digestive issues and it can be across the board. So certainly can see bloating, gas, constipation, diarrhea, but also especially with less saliva, change in the microbiome, difficulty swallowing. There also can be some issues with motility. So the food moving from the mouth down into the stomach and then through the rest of the track. When we're talking about dryness, skin dryness too, itching is also another common symptom that will come up. The other piece that I don't think gets taught, and frankly, I was quite surprised to learn, I was at a conference on dysautonomia or misbehaving automatic part of your nervous system a couple summers ago.

1:05:57And I'm sitting in the audience. I also, I was going to do a talk on lifestyle as medicine and they start talking all about Sjogren's. And I was like, wait a second, what did I miss here? Sjogren's is the number one autoimmune cause of things like POTS. So postural orthostatic tachycardia syndrome. So these conditions where primarily women will notice that if they change positions, that their heart rate will skyrocket or they feel like they're going to pass out or they do pass out, that they have these changes or differences in how their nervous system is responding. Sometimes you can see it as eyes dilating differently or not able to sweat, interestingly enough.

1:06:43You brought up fatigue. Fatigue is such a common symptom of all autoimmune conditions. It's actually the top symptom of endometriosis. I actually, I had excision surgery and two weeks after my excision surgery for my endometriosis, like my energy was through the roof. And I was like, I'm recovering from a surgery. This doesn't make sense. But what is at the heart of this is this chronic inflammation that you're living with. For women, you go to the doctor, you say, I'm fatigued. Of course you're fatigued. You're a mom. You need to sleep more. You're working too much. You are too stressed. You're just getting old.

1:07:20Like there's always some reason to dismiss us. Fatigue is something worth paying attention to, but somebody listening right now, I'm sure their question is, what can I do that's going to help with the fatigue while I'm waiting on that doctor's visit, while I'm waiting on that lab work to help improve my energy? So one thing I just want to echo that, I gaslit myself into thinking. Like this is something that I want people to understand that like doctors, it is so inherent in our training to gaslight, like that we gaslight ourselves. So I certainly gaslight myself about things like, oh, my pain's not that bad.

1:07:59Oh, my energy. So I have to share the story. This is the worst gaslight. It's so, I'm like, why I do this? I won't do this with patients. Like with patients, I'm like, no, we are not going to gaslight you. I do it to myself. Why? Why is it? Same with the self-compassion, right? It's like the same like. So I was going through fertility treatments and they put me on birth control pill because they were like, oh, we got to delay it. And within about three to five days, my mood tanked. I was raging. I was so off the chain mentally. And I was like, this can't be the pill. It can't affect me that quickly.

1:08:33Like, sure, the pill can affect your mood. However, not this quickly. Like this, this got to be a knee issue. And it was my husband being like, no, you cannot take birth control. You are not the kind of person I want to be around. And like, and it takes that so often. And I think that is what it can, something we see the most healing part of going to the doctor is when your doctor hears you, sees you, believes you and ends your gaslighting for you. So sorry, you were saying you gaslight yourself, but I just want to know that if they're doing that, you're listening to two medical experts right now who have done it to themselves too.

1:09:06Yes. And I still find myself from time to time being like, oh, no, wait, you do need a day off. So I think one of the things that can help you as you're getting ready for that appointment is one, trying to notice what fills your cup, what charges your batteries and what drains you. That can be helpful information for your healthcare professional to know. I think another thing to jot down and to take note of is how is it showing up in your life? I think, you know, one of the things that I finally said to my primary care doc was, hey, when I sit on the floor and I'm trying to play with my kids and I stand up, I feel and look like I'm 80 years old.

1:09:50I'm like hunched over. I'm so stiff. I'm having to take a nap every day after work, even though I'm working half time. Like this isn't normal. I think showing, you know, kind of showing them and telling them how that's showing up can be really helpful. It's also giving you some information about yourself too, because there can be certainly different drivers towards fatigue. So the one thing we're always going to want to ask about is how is your sleep? Is it restful? If you have someone who can keep an ear out, you know, while you're sleeping to listen to your breathing, are you snoring? Are you having pauses in breathing because we know if you're obstructing, if you have apnea, that that's going to increase inflammation.

1:10:36And frankly, poor sleep is going to too. Oddly enough, sometimes a little bit of movement can be quite helpful, but listening to your body is movement and doing a little bit of movement or exercise, is that energizing you? Or are you paying for it day, two, three down the line where you have this what's called post-exertional malaise where you've overdone it, you've over, you know, over-drained your batteries and you are just out for the count for the next few days. That is a really critical part of that history, that lived experience. It really helps me understand what's going on. I think, you know, are there other symptoms going on?

1:11:16Things that might point towards vitamin deficiencies, thyroid problems? Do you have really heavy periods where your iron might be low. Those are all, you know, things that each one individually may not be the magic, you know, solution, but certainly if someone has low iron and low vitamin D and, you know, these different things, one, that's going to make me think how is their gut health and those sorts of things, but replacing those can be really beneficial. Or if your thyroid hormone is low, you know, getting that back into balance can be really beneficial. Are there common nutrient deficiencies you see with Sjogren's?

1:11:57Similar across the board with other autoimmune conditions. So not uncommon to see iron or ferritin, which is kind of the marker for iron storage of the body. Vitamin D is another one. Vitamin B12 is another that I think of a lot, especially knowing and learning. A lot of the recent science looking at Sjogren's is looking at this role of neuroinflammation. And so we know that B12 deficiency is another factor that can play in. I also often will check a B6 because if someone's taking B vitamins, sometimes you can overdo it with the B6 and kind of shoot me the other way. But those are the things that I'm typically thinking and looking for.

1:12:40Yeah. And we see that vitamin D is such an integral player in the immune system. And when vitamin D gets low, we can see autoimmune flares. And we can see, I mean, we see a lot of immune dysfunction. And, you know, I hear still from other doctors who are like, well, I just tell them to go outside and get more sunlight. And I'm like, I love everybody get outside more. I love that. However, in these autoimmune patients who are deficient, they're not going to be able to get enough sunlight. And we know that not everybody's synthesizing it in the same way. People are wearing sunscreen. People have office jobs.

1:13:15Some people are night workers. Like, again, it's bio-individual. Yes. and some autoimmune conditions, lupus, for instance, some patients with Sjogren's are sun sensitive. So sun and UV exposure itself may actually precipitate a flare too. So again, those are folks that you're going to have to rely on supplementation or significant increase in dietary intake as well. For people who are getting their blood tests, because that's the best way to guide supplementation for everybody listening. And then we always want to have D3 coupled with K2 because we don't need calcium in our arteries. Not a good place to have it.

1:13:52But for people listening, they're going to get their blood tested. What's the ideal reference range that you're looking for for autoimmune patients? I am typically looking for 50 and above and try not to get too close to 100, trying to stay in that range. It's interesting. For some folks, you really have to push the daily doses much higher than I ever expected. You read through kind of what the replacement guidelines are and kind of wiggling it up and you're like, oh gosh. But when you look at kind of those factors that change gut permeability, vitamin D deficiency increases permeability, increases leakiness, you're not going to be absorbing it as much.

1:14:33So sometimes you do have to kind of turn up the dial to switch that and reverse course. I think that's important for people to hear that, you know, at least 50, because, you know, I made this joke to my husband that I got lab work done and my doctor was like, everything's fine. I'm like, well, I need to see it because like with something like vitamin D, if the lab, so if you get your labs drawn in the Pacific Northwest, for example, then 20 is going to be the end cutoff. Why? Because I mean, I lived in the Pacific Northwest and I do love not seeing the sun for nine months out of the year. I know it's weird, but I do love that.

1:15:09And yet, you know, If it's something like you get your blood drawn in California, then that reference range, the lower end might be 30. But what I said to my husband was like, I have to see my labs because if the reference range cuts off at 20 and I'm at 21, they're going to call it normal. They're going to be like, that's fine. And it's like, it's not fine. And also it's really low. And so for people to understand lab reference ranges, that data is flawed because it is elderly people and it is sick people who predominantly will get their blood drawn. and if we're drawing someone's vitamin d it's often because we expect it to be low and so a lot of the lab reference ranges are actually set on the suboptimal you know population in terms of like i'm not saying elderly people are suboptimal but unfortunate reality is that in the next 40 years my tissues are not going to function in the way that they used to like i'm like show me the data of that healthy 20 something i want to see that reference range that's my goal that's what I want to go with.

1:16:09Well, I think, you know, we've been seeing an increase in that conversation on ferritin and iron too. And I know at least the labs I've been using recently, their cutoff is somewhere around 15 is considered normal, but really you're looking for somewhere 80 to a hundred at least to say, okay, your tank's full enough where we don't think that that's necessarily contributing to your fatigue. Yeah. And for women listening, when your ferritin starts to drop below 50, we will often see hair loss and hair loss can be a sign of multiple autoimmune deficiency or diseases and nutrient deficiency. So that's also something that your doctor just saying like, oh, you're just getting old.

1:16:47Like if they say, yeah, you're a new mom because you're four to six months postpartum. Sure, that's what we expect. But like if your hair is not growing back after that, then we've got a problem there. We talked about Sjogren's symptoms, how prevalent it is impacting 90 % of that population being women. For people who don't know what Sjogren's is, what is going on? What's the mechanism that is driving this dryness? But also, you know, the POTS-like symptoms, the inflammation. So for the longest time, Sjogren's was taught that it was a localized autoimmune condition that just affected the glands that create secretions.

1:17:30So your saliva, your tears. What we've realized though, and when you look at biopsies of those salivary glands is that most often in patients, even with longstanding Sjogren's disease, that they still have viable tissue there, which is different than what you might see with for instance, Hashimoto's that has kind of gone to where the whole gland and often is destroyed by the immune system. And so that kind of started this question of like, okay, well, if the tissue is still there, why is it not functioning? And this greater, you know, discussion around Sjogren's role in its impact on the nervous system, which I think comes into this play with the dysautonomia, the connection with POTS and so forth.

1:18:19So Sjogren's is a systemic autoimmune disease. For the longest time, it was known as Sjogren's syndrome. That has changed. It's now considered its own disease process. For many years, it was divided somewhat arbitrarily into primary Sjogren's and secondary, meaning that someone had Sjogren's on its own. They didn't have any other known autoimmune diagnoses yet. And secondary being, because it often is, like many, seen with lupus, Hashimoto's, celiac, you name it, other autoimmune conditions. That terminology has gone by the wayside, but you'll see it come up from time to time. It does primarily affect those epithelial glands, so the secreting glands that I mentioned, but it also does seem to impact the nervous system.

1:19:13And in particular, you can see impacts on the nervous system and from the small fiber nerves, which are the part of our nervous system that are helping us sense what's going on in our body and in our environment, right? Our sensory neural network, all the way up to our central nervous system. And so it's not uncommon to have a history of migraine headaches or other neuropathy nerve problems, tinnitus or that ringing in your ears, anything numbness, tingling across the gamut that really kind of comes into play. Hey, Chicago, class it up with Crocs. You know back to school is coming in fast. So why wait to find your new fave footwear?

1:20:05Step into a local Crocs store and step into your new look. Try it. Style it. Make it yours because the right pair doesn't just show up, it shows off. First day fits, handled. Walk out ready for whatever's next. Visit your nearest croc store today. Although we think of it as primarily affecting those epithelial glands, for some folks, especially those who have a more neurologic predominant kind of form of the condition, often that dryness will lag behind. So that may develop later on in the disease course. The other thing that we know is that, you know, the labs that I learned to pass my exams that are associated with Sjogren's, so some of those blood tests or serologies, autoantibodies, the ones that we think of that are most specific for Sjogren's are called SSA or SSB, the Sjogren's syndrome antibodies A and B.

1:21:06Those are positive somewhere between 60 to 70 % of the time. it's pretty good but that also means that 30 to 40 percent of the time lab work may be totally normal and i think this really complicates this diagnostic process if you have a patient who comes in they primarily have fatigue and body pain their labs are pretty normalish maybe a vitamin D, what have you. And you're in that rushed visit where that doc doesn't have the time or thought to say, are your eyes dry? Is your mouth dry? How have your dental checkups been? That additional workup, that additional evaluation doesn't even come up.

1:21:52So they, you know, get that label of fibromyalgia, vitamin D deficiency, what have you. and you know that diagnosis is pushed further and further out i think about how you bring up the impact on oral health and how within the united states oral health and eye health are separate entities it's ridiculous right as if like these are just not part of your body these are two areas that shogren's can affect and yet people may not have you know eye coverage or dental coverage and so they're not getting that extra check because what i'm hearing from you is that there's the problem with you know the quick visit the lab testing so i thank you for hearing the diagnostic uh tests for showburns but the other checks that would be in place would be seeing your dentist seeing your optometrist or ophthalmologist it's critical and that's actually that was kind of the the last breadcrumb or last puzzle piece that pushed me to go ask for labs.

1:22:54So I went in for my dental checkup that I was due for after having my second child. At the time I was, oh gosh, I was so fatigued again. You know, it's like, oh, mama two, my second year as, you know, a full-fledged, you know, faculty, you know, doctor. I just must be tired from that. And in the background though, I hadn't really been able to wear contacts for years. Every time I put on mascara, for the most part, it looks like a raccoon. And because I was always touching my eyes, dry eye. And the dental hygienist was like, Kara, your mouth looks really dry. Is everything okay? Are you on any new meds?

1:23:37Wasn't really on any medications at that point. And I was like, oh gosh. And then, you know, knowing kind of that the answer to the test question, right? Then I was like, okay, the puzzle piece is kind of shifted of like, I did have some weird kind of off blood work that I couldn't quite make, you know, make sense of a couple of years ago. And I never repeated. And my back has always been real stiff, but it gets better when I'm pregnant. So I always felt I was in that third that always felt amazing. I wanted to bottle up the pregnancy hormones and just stay in second trimester all the time. Which is also why I'm like, you know, this whole conversation around perimenopause and menopause.

1:24:19And I just get so much flack from doctors that are like, if she doesn't have a uterus, she doesn't need progesterone. And I'm like, well, if she's ever had endometriosis, she needs progesterone. And if she's ever had immune system dysregulation, she needs progesterone. And if she ever has had trouble sleeping or anxiety, she needs progesterone. Progesterone's not just about our uterus. Could we just stop with that? So I'm curious as you bring that up though, do you feel like childbirth was the triggering event that really tipped the scales on autoimmunity? I think it ramped things up enough to where I couldn't ignore it anymore.

1:24:53But thinking back, I mean, the summer before I went to medical school, I had an episode of parotid gland swelling. I remember going to, at the time, my primary care clinic was a medical student kind of run clinic with the university medical school. And I remember being the interesting patient that everyone kind of came and looked at like, cause I had swollen glands and I didn't have mumps. No one ever wants to be the interesting patient. I would say like in my, um, yeah, with my fertility doc, uh, there was stuff going on and he was like, you're such an interesting patient. I'm going to bring my residence in.

1:25:29And I'm like, no, nobody, I don't want to be the interesting patient, but he's just like, yeah, like any medication, if there's going to be a side effect, like you're going to have it. I'm like, yes, I know. Like it's the worst. That was like when, another story, but I ended up having a significant flare with my liver becoming inflamed, liver biopsy. And the local academic center was like, yeah, we actually need to send this to the NIH to have them look at it. I was like, oh, great. Super. You're like, I don't want to be special in any way. Yeah. This is the no-no. So we've talked about these different ways that Sjogren's shows up.

1:26:10What are the top conditions that Sjogren's gets misdiagnosed as? So you brought up IBS, you brought up fibromyalgia. I often think, and often we'll see patients who have been diagnosed with systemic yeast issues, candida. And it may be a true, true related situation. If you have changes in, you know, with dry tissues, having thrush and having changes in your microbiome where there might be, you know, increase in yeast like dysbiosis or SIFO, small intestinal fungal overgrowth, recurrent vaginal yeast infections. It's not surprising if you have those tissues that already have changes in that local environment.

1:27:00Those are really the common ones. Sometimes lupus will come into play too, in part because the diagnostic criteria are a little bit harder to follow. And it's not uncommon for patients with Sjogren's disease to have a positive ANA, which is considered kind of the lupus test. Yeah. Except ANA can turn positive for so many reasons. I'm cutting Hashimoto's and everything else. Yeah, totally. And that is something that I would like to know if you agree with, but if there's a positive ANA, sometimes we need to retest and see like what else, you know, is it, does it stay true? And also, you know, what else could be going on.

1:27:44Yeah. I think, you know, one of the very first lessons I remember learning in medical school is treat the patient, not the labs. It's also one of the first lessons that gets thrown out the window. I was just going to say, so why is it your labs are normal? And you're like, I don't feel normal. I love that meme. I mean, I love it. Hate it. Right. The reality is you, and this is so very true with allergy testing, especially you need to take that lived experience and reconcile that with the data. Does the data make sense? Is it supportive? Is it contradictory to what you would expect? And that takes some time, some thinking time.

1:28:27And the fortunate reality is our system is not set up to allow for that time and space to think through those things that don't quite follow the textbook as you were taught. when it comes to exposures that make Sjogren's worse, what would be like the top three things that you would say make your best effort to avoid these? One thing from a practical standpoint that I have found pretty darn helpful, I've always been very prone to mouth ulcers, canker sores. And for me, making a switch to sodium lauryl sulfate free toothpaste has been really helpful. So SLS is the soap or the surfactant in toothpaste.

1:29:09It's a really great cleaner. It makes it all bubbly and wonderful. But for some folks, if you already have changes in that barrier and that your armor is already a little more susceptible to having injury or chinks in your armor, then that may be one extra thing that could push you over the edge. And so that's one simple swap that for many folks can be quite helpful. I think the other is being mindful of the amount of vitamin D and omega-3s in our diet, whether you're taking in a supplement or getting it through your food. Big study several years ago called the Vitals trial that looked at autoimmune patients, all comers, and didn't even test their vitamin D levels.

1:29:56They just put a group of patients on vitamin D supplementation, a group of patients on fish oil and then the placebo controls. And then they look to see which of these groups were more likely to have an additional autoimmune diagnosis and which were the least likely. Those that were on the omega-3 or fish oil supplement and vitamin D were the least likely to have that additional diagnosis. So I think if you have someone who is susceptible or has other autoimmune conditions, it's probably a low-hanging fruit to think about in regards to kind of setting yourself up for success. And then last but not least, keeping an eye on how your digestion is doing.

1:30:43And if you are noticing shifts or changes, sorting that out and really working on trying to increase the plant power, you know, as best that you tolerate it, sorting out what you like. Variety is the spice of life. And we know that so much of the immune system is really in the gut. And so many patients with Sjogren's are, you know, are seeing kind of those changes, whether it's related to the gut barrier dysfunction or leaky gut or the motility issues. And that's something to kind of keep an ear and an eye out. And as I think back to my own story, those are probably some of the first things that I recall.

1:31:21Like I couldn't tolerate eating raw broccoli anymore or onions. Like that was just miserable. And so having an ear and an eye out for that and making adjustments, I think. And so you've talked about some of the nutrition, the lifestyle, things to avoid. What can people expect if they get this diagnosis? What's the treatment look like for them? Yeah. So I think that has been another really big barrier to diagnosis because there are no FDA approved treatments as of right now, as we're recording for Sjogren's disease. That being said, there is some data to say that using hydroxychloroquine, also known as Plaquenil, can be helpful.

1:32:06That especially can help with, we didn't talk much, but Sjogren's also can affect the joints, also can affect any of the internal organs, similar to lupus. That may help prevent kind of ongoing progression for some of that. And generally speaking, that is a medication that is not terribly, it's not immune suppressive. So it doesn't increase the likelihood of weird infections or other things going on in that realm, as long as you tolerate it okay. So I think that's something to consider. Generally will help with energy too for a lot of folks. I think the other thing to know and another reason I've really advocated for patients to be proactive about exploring a diagnosis if they're kind of reading through the symptoms and like, oh gosh, this shoe fits, is there are what appear to be effective and so far, so knock on wood, look to be fairly safe treatments that are in phase three clinical trials.

1:33:03So I think there's a lot of hope within the Sjogren's community that we're finally going to see some of the beneficial changes that have come about in psoriatic arthritis, that of come about in RA and lupus, that we're going to have our turn at some of these treatments that are a little more targeted to what's going on. And the other reason I think pursuing a diagnosis and being thoughtful and proactive is something we haven't talked about, but it's really critical that having a diagnosis of Sjogren's disease increases your risk of lymphoma considerably. somewhere upwards of 44 % of like someone who doesn't have Sjogren's disease.

1:33:47So there's somewhere between five to 10 % of patients with Sjogren's will go on to develop a non-Hodgkin's lymphoma. And so if you have that diagnosis on your chart and you have a lymph node that's staying swollen for long, you know, longer than it should for a cold, well, goodness, I'm going to be a lot more aggressive at saying we need to get that biopsy or ultrasound. We need to check that out. Because you want to catch that, right, early. It changes the math in how you're thinking through what you're more, you know, what those potential problems and downstream effects may be. Do we know the reason why Sjogren's increases the risk for cancer?

1:34:28Yeah, so it increases the activity of B cells. So when we look, there are some markers you can look at with disease activity. those who have those higher disease activity markers, those do tend to be the folks that are at higher risk for Sjogren's disease. So folks that have a lot of ongoing lymphadenopathy or swollen lymph nodes, those that have vasculitis or kind of the inflammation of the blood vessels that may cause some characteristic rashes and things, those that have particular lab markers. So often we'll monitor something called complement levels, something called C3 and C4. If those are lower, that's also a little bit worrisome.

1:35:08And do you ever recommend things like lymphatic drainage massage or people doing dry skin brushing? I haven't routinely recommended it, but if folks find it helpful and they can fit it into their routines, I don't think it's going to be harmful by any stretch. I enjoy it. I think the one thing to be cautious with the dry skin and skin that's a little more sensitive to begin with is just making sure the brush isn't too rough and that we're moisturizing afterwards. Yeah. Yeah. You brought up dysautonomia as part of Sjögren's, but we also see it with mast cell activation system. Can you explain that connection and how people can differentiate what's going on?

1:35:52I'm going to go out on a limb because I have no scientific evidence to support this in part because no one's looked at it yet. I want to change that. Working on it. I suspect that there also is a significant overlap between Sjogren's disease and mast cell activation. I think in part it's the patients I'm seeing, but what's happening with mast cells and small fiber nerves is that they are found in the same locations in our connective tissues, and they are tasked with similar tasks physiologically to help us recognize safe from not safe. They're in constant communication with one another. If you look at the surface of a mast cell, there are multiple receptors for different neuroreceptors on them.

1:36:41If you look at the nerve receptors, there are receptors there that are looking at some of the things that mast cells secrete, histamine. These two structures, right in the midst of our connective tissue, are in constant communication, immune system, nervous system. And for so long, you know, the real, the unfortunate reality as medicine has become so super specialized. So neurologists and the immunologists are in totally different wings or buildings of different hospital systems, not talking to each other as much as ideal. that has shifted, especially I think as we've come into this post-pandemic era where we realize that neuroinflammation is a big deal and is affecting more people than I think we ever thought.

1:37:26But when you have that breakdown in those barriers, those leaky barriers in our skin, in our gut, in our respiratory tract, our GU tract, those mast cells who are the border guards, along with those sensory nerve fibers are seeing more of the external environment, more opportunities for them then to say, hey, there's a problem here. And what we think is happening is that in some cases, that response is kind of getting stuck on autopilot, that if your body feels as though it is constantly under attack, you are going to go into a state of kind of hypervigilance, right? Your immune system is going to want to make sure that it is on guard to be able to protect us through whatever that insult is.

1:38:16And so that's kind of some of the working thought behind what may be happening in mast cell activation and why I think patients with Sjogren's who already have a lot of barrier dysfunction may be at an increased risk. What can people do to, you know, address the histamine issues if they have mast cell activation syndrome? Yeah. So, you know, one of the mainstays of treatment is, I lovingly like to say, trying to keep the horses in the barn. So we will often rely on antihistamines, things like, you know, the over-the-counter loratadine, cetirizine, vexafenidine, famotidine, which often you'll think of as a stomach acid suppressant, but kind of closes the back doors.

1:38:59And sometimes it's trial and error of figuring out which one or ones might be helpful. What's difficult is that sometimes the extra ingredients that are in a tablet or in a liquid medication for that matter too, those fillers or binders, sometimes those can be perceived as a problem. And so sometimes we are thinking about trying compounded versions of those where some of those binders or other things are left out. We're also thinking about other ways just to decrease that load, that allostatic load or what the immune system is seeing and potentially deeming as a danger signal, right? So trying to avoid fragrance, you know, using kind of quote unquote cleaner products, more simple products, trying to eat, you know, this may be a case where we may try gluten-free or, you know, some dietary changes to see if those are helpful.

1:39:57occasionally folks will find eating less histamine helpful though i always tread very carefully there um because that diet's the worst it's really hard and it does eliminate a lot of foods that are thought to be generally quite healthy like fermented foods so it's a balance but also no leftovers i'm like yeah i don't know there are people it's a mixed bag there when the histamine diet works for them i'm like that's fantastic let's try to get you off that as soon as possible. It's really, it's really restorative and it really takes the joy out of living. And I think we also have to like, look at food that way of like, it's, I just, um, I always joke, like if you're someone who's like, food is fuel and that's it, we can't be friends because food is pleasure.

1:40:41Food is community. Like tell me you're from the United States without telling me you're from the United States. You say that because no other culture in the world, like I grew up in a Hispanic family, like food is about how we love food is how we have community. Food is about like tending to the parasympathetic nervous system. Like it is doing so much more. And you know, that's a little bit of a rant there. No, I'm bored. You didn't mention Benadryl. No. Yeah. So we've shifted away from Benadryl on the whole. Now I do have some patients that that is their perfect antihistamine in that it works really well for them.

1:41:15They tolerate it. It's not making them sleepy. And so, you know, again, everything in the nuance that's why you have longer episodes. But in general, we've realized that Benadryl, one, it doesn't work any faster than those longer acting, less sedating antihistamines. It also has an increase in what we call anticholinergic side effects. So the dryness, the sleepiness, the foggy thinking. People on Benadryl, they studied, it's equivalent if you're driving on Benadryl to drunk driving. So there is a big safety component there. I don't think enough people have gotten that information. Yeah. You're talking about the safety component and then the dryness.

1:41:59Like if you have a condition that's making you dry, you don't want medications that make you dry. But there's also long-term implications. Yeah. Yeah. So it's thought to be linked to those anticholinergic effects that that may increase our risk of memory issues as we're older. It's tricky, right? We also haven't really known about or studied the long-term impacts of mast cell activation. And so, you know, I think there's this push and pull, right? There are some folks that there are conditions, for instance, that using long-term use of PPIs or proton pump inhibitors seem to be very beneficial and helpful.

1:42:39There's also a lot of data that says for vast majority of people, that's not a good idea at all, and maybe setting us up for a lot of significant health issues. So I think it always has to be that individual conversation with your healthcare team to really kind of parse out what makes the most sense given your unique set of circumstances. What is known right now about the long-term impact of mast cell activation syndrome? I don't think we have great data at mast cell activation syndrome. We have a bit more understanding of conditions like mastocytosis, which are related but different enough. Can you explain what that is?

1:43:18Yeah. So mastocytosis is more of an issue with the bone marrow producing mast cells in greater numbers. And also they look a little funny under the microscope. They behave a little different. Most often they are associated with a particular mutation in something called a KIT receptor, which makes it a little easier to kind of test for in many ways. We will extrapolate to some degree our treatment strategies on mast cell activation from those patients with mastocytosis because there are a good amount of overlaps. But frankly, there's a lot of ongoing debate amongst docs who take care of patients with mast cell activation syndrome on exactly what it is and who it is that we're treating.

1:44:04So there are two kind of main camps, and they each have a set of diagnostic criteria called consensus criteria, consensus criteria one and consensus criteria two. And the unfortunate reality is that there aren't many folks from those particular groups that communicate effectively with one another. I think there's some backstory. Frankly, I'm still somewhat young enough to not know the whole backstory. There's some little drama there. I think so. Which is really unfortunate because, you know, what we've come to find out with many conditions, I think the one that's the best example in my mind is asthma.

1:44:48When I went through medical school, asthma was two diseases, allergic and non-allergic. Now we realize it's over a dozen. And they have some unifying characteristics. The airways constrict, there's inflammation, but the flavors of inflammation vary a little bit. The types of medications that treat that inflammation are different amongst those people. And there's generally some different characteristics on age and gender and other health conditions that go along with them that kind of group those into different, you know, kind of clusters. I really suspect consensus one and consensus two, we're just kind of focusing on different clusters of folks.

1:45:29And we haven't really fleshed out what that whole picture looks like, but that would make the most sense to me. And so where I come from is I listen to the patient. Does it look like a duck and quack like a duck? Do the symptoms that they are explaining sound and look like symptoms that may be related to histamine or the dozens, if not hundreds of other chemicals that these mast cells secrete? You know, many of the medications we talked about, many of the treatments we think about, especially those first-line treatments, they're pretty safe and they're generally fairly effective. Mm-hmm. So while we're working on diagnostics and thinking about some blood work and checking urine for some metabolites and other things, why don't we try some of those?

1:46:16Yeah. And see how it goes. You'd be surprised at the pushback I got from some peers on that interpretation of things. But I'm right there with you. I'm like, once the patient gets the blood drawn, once the labs are done, why don't we start an intervention that gets them feeling better? because sometimes labs take six weeks to come back. Like, why would I make that person wait another month and a half? And like you were saying, you know, using something like, so it's really within the PMDD community, within the endometriosis community, the ADHD community, the autism community, using H1 and H2. So like Prevacid and like loratidine, Claritin.

1:46:58I'm like, what is the, what is the, Yeah. The other people will recognize. Yeah. Using those in conjunction has had tremendous results for people. And so it's always something that it's like, we can just try it. Also, when I have a patient that's like, I think I have histamine issues. Should I do the histamine, you know, antihistamine diet? I'm like, why don't we instead work this up? And let's just start you on these medications. Because if you feel better in three to five days, we've got the answer. But the histamine diet, you're going to be on that sometimes for three months. And it's still like, I don't know, because surprise, it's not just a food issue.

1:47:35Other things can be setting you off. Absolutely. You brought up the symptoms. You're like, I listen to my patient. I look at the symptoms, the duck analogy. What are the symptoms of mast cell activation syndrome? So, you know, those typical allergy symptoms are the ones that I initially will ask up. Itching, sneezing, runny nose, watery eyes, red eyes. mouth itching, hives, big one, swelling. Hives will look like red raised itchy bumps, kind of like they'll play a game of whack-a-mole across your body. The swelling or angioedema we'll sometimes talk about, usually it will affect the lips, the tongue, sometimes the eyes, genitals, hands, and feet.

1:48:17Similar to hives, it just looks different in those more vascular tissues. The other things that we'll talk about are digestive issues. And sometimes this may kind of overlap with histamine intolerance. And that we're still trying to understand some of those distinguishing features. You may have symptoms where you eat and then you run into the bathroom because it's kind of like a dumping syndrome where it's got to go, got to go. Or eat a big histamine load. And some folks will have profound flushing, feel very hot, feel very unwell, and just that sense of doom. And then there are the neurologic symptoms, headaches, migraines, changes in concentration and things.

1:48:58And I think that's where it gets challenging because there are a lot of things that can show up that way. So it's really trying to put together this whole picture and then leaning in, you know, a bit to that intuition, a bit with where your patient's coming from too and saying, okay, with all this in mind, And what do you think about maybe a trial of antihistamines for a week? Low risk, good potential for reward based on what we've talked about, and deciding if that sounds like it's a good idea or not. Mass cell activation syndrome versus histamine intolerance. How can people differentiate the two?

1:49:39I think we're still trying to understand that fully. I, at least in my mind, I think of histamine intolerance in a similar vein that I think of lactose intolerance, where the body is not making sufficient enzyme to break down histamine that is in our diet or that we're producing internally and trying to eliminate through our gastrointestinal tract. Sometimes I will try or patients will want to explore trying some supplemental enzymes, kind of like we would use lactate. And I think that's very reasonable. I also will say my experience with that has been hit or miss, depending on the patient. This is a very hot topic.

1:50:18And so muscle activation syndrome, we're seeing a lot of people talking about it online. We're seeing a lot of doctors saying, this is just the new trendy diagnosis. It's not real. What would you say to that? It's really disheartening. I think back to how much has changed in my relatively short career and lifespan, even within my field. I'm going to go back to the condition we mentioned briefly, eosinophilic esophagitis. EOE, as it's more easily said and known, was case reportable when I was born in the 1980s. It now is so common that it's no longer considered a rare disease. It's a huge change in how that disease is showing up in the population, who it's showing up in, our understanding of it has changed night and day over that period of time.

1:51:17If we think that the only conditions that we would ever see in our career were those that we learned about in textbooks in medical school. And it's pretty short-sighted. We, as a species, we talked about, we're living in this perfect storm of circumstances where our bodies are seeing more, interpreting more of our environment, have that potential for things to go haywire, misbehave. In my mind, it would make sense that we're going to continue to see different conditions or the potential of different things to pop up. And first and foremost, listening to our patients and their lived experiences is critical.

1:52:02That's how we learn. That's how we know and discover new conditions. And by just brushing something off because, you know, it is a hot topic and we are more engaged in wanting to take ownership in our health and healing, essentially shooting ourselves in the foot. Mm-hmm. And I appreciate that you said, you know, EOE is something that's being recognized more. It doesn't necessarily mean that there's this explosion, this epidemic, that far more people are having this. A lot of times it's that it's actually being recognized. We actually have lab testing now. We have imaging. We have enough studies to validate what the patient is saying.

1:52:49in reality. It is a lot how doctors come from things. And we're seeing this so much on social media where people start talking about a topic more, more people start to get diagnosed. You have more doctors dismissing those people. And then you have the general public also saying like, we must have an epidemic. We have a problem. We're seeing this with ADHD and autism and women right now. No, we don't have an epidemic. We have decades of women. We have generations of women who were ignored, dismissed, and told, suck it up. Suck it up and smile and be a good girl and just be pretty. Like, that's what we're asking of you.

1:53:24And now we've got people saying, we're seeing this huge explosion and it must be an epidemic. And it's like, no, these are people that should have been diagnosed 43 years ago. No, I'm laughing because 39, yeah. I took my oldest to get evaluated and my own therapist was like, you know, this is my story too. I had my son in a session. I'm like having meltdowns because the scene of your socks is not right is normal. I don't understand. She's like, girl, we need to talk. I'm like, what? And then when I got my diagnosis, I was like, oh, my entire life makes sense now. Then we see these clusters of things.

1:54:07So as we talk about these histamine issues, as we talk about autoimmune disease, we see these clusters of genes. So if you're neurodivergent, more likely to have histamine issues, more likely to have autoimmune issues, more likely to have endometriosis, more likely to have PCOS and ADHD going together. There's these clusters, but there's also the way that our nervous system is wired, as you talked about from the beginning, that sends this danger signal. When your brain, so for people who are neurotypical and you're like, what are you talking about? Neurodivergent brains don't get the same pruning that your brain got, which is like basically take in less information.

1:54:44We take in far more information. And we now live in a society where we walk around with computers in our hands. There is a literal noise and overstimulation and input coming in at all times that the neurotypical brain is suffering from this sympathetic overdrive, from this chronic stress. So that makes the neurodivergent brain even more susceptible for these things. So I just want to fit all of that together for people, for them to understand that like, if you have one autoimmune disease, we need to look for others. If you're having trouble with histamine, we need to ask what else is going on.

1:55:22There's a problem in medicine where doctors will often think you got the diagnosis. PMDD is one. You have PMDD. That is your label now. This is who you are. And we look at nothing else. Check. Yeah. And yet we understand that 50 % of those with ADHD and over 90 % of those with autism report having PMDD. And we start missing those pieces because what's under PMDD, sometimes it's a progesterone issue, but a lot of times there's a histamine issue. There's a nervous system issue. And so we have to peel back those layers. I want to ask you for women who are going to their doctor, they don't feel normal, but their doctor tells them, your labs are normal.

1:56:05There's nothing we can do going your way. What would you want them to know about advocating for themselves? First, I just want to say, don't give up. I know it can be really hard not to. And what frustrates me to no end when this happens is we know that that leads towards an ongoing delay in diagnosis, and ongoing delay in treatment potential and intervention potential. I think this is where having your data can be helpful. Doing a bit of homework before your visits can be helpful. When you have seven minutes with that doctor, having kind of those key points in mind, like these are my objectives that I need or would like to get out of that particular visit can be really helpful to have thought about beforehand.

1:56:56I think it's also an important time to say, okay, is this something where I think about seeing someone that has more time, that can put together all of those pieces and listen to the whole story? It's going to be really powerful. I worry that things are going to get worse before they get better. Why do you say that? It's been really hard to see any type of consensus when it comes to enacting more systemic change across health care. And to me, it seems like we're more divided than we ever have been. I don't know. We all lived through a pretty horrific set of years with the pandemic, with so many people dying, so many people coming out with long-term ongoing suffering.

1:57:48and that wasn't enough to spark change. So it makes me wonder what will be enough. It was interesting to see in the pandemic how quickly many practitioners started to turn their back on nutrition, lifestyle. What we knew about vitamin D, we weren't allowed to discuss about vitamin D. And I think a lot of what happened in healthcare behavior was driven by the censorship of both the political administration who was in charge, but also the social media. And when Mark Zuckerberg came out and finally admitted that, yes, they were in fact censoring during the pandemic, I'm like, that's so problematic.

1:58:31I'm someone who, I developed severe COVID. I spent four months on oxygen. I ended up with long haulers. Every neurological symptom that you were listing off with Sjogren's, I'm like, oh, shoot, should I get tested for that? Because I had POTS. I had trigeminal neuralgia. My COVID was, I couldn't oxygenate and I had all these neurological symptoms. And I was trying to share my story online and find people who were like me because doctors were like, we don't know. And yet I was also censored. And they wouldn't, and I'm like, I'm just sitting here talking about the fact that I'm on oxygen, that I don't have diabetes.

1:59:10I don't have heart disease. I don't have any of that. And yet I got severe COVID. And that was something that they deemed had to be censored because it went against the CDC saying you only get severe COVID. The World Health Organization only says you get severe COVID if it's these things. And now, you know, it was like, I kept saying, like, I think it's related to my autoimmunity. I think there's something going on with my autoimmunity. And then studies came out like six months later and it was like, lo and behold, you might actually have autoimmunity triggered by COVID that makes it so your immune cells don't fight.

1:59:43And then you have dysautonomia, you're having POTS, you're having all of these things. And so I think we have, like, it's so easy to be like, wow, doctors, you got it all wrong. But I think doctors being human were influenced just as much by what social media was doing, which was, I, it's funny because people ask me, like, do you censor your podcast? I'm like, no, because I actually don't, after what I saw happen in the pandemic, I don't support censorship anymore. If you're saying racist things, I'm going to kick you out. You're getting censored and I'm kicking you out because you're not allowed in my house.

2:00:19But you know, it's outside of like something grossly horrific like that. It's like, you can have independent ideas and thoughts. Something happened in the pandemic where clinical experience became something we stopped listening to. And then we started censoring anything that wasn't just in line with what we currently thought. And I'm like, This is the opposite of science. And we saw these camps split and people blame like this, you know, alt-right pipeline and all of this stuff. I'm like, okay, censoring people pushed people that way. Like these camps split and they divided because people were like, I want to be able to talk about what I want to talk about.

2:00:59I don't want to be censored. And then we had people that were like, everything and everyone is a conspiracy theory. If you question pharma, if you question this, and it's like, and on this podcast, I find that every single person has been in the middle where they're like, no, no, no, no. Some things are a conspiracy, but also some things are true. Like people needed to exercise during the pandemic and have community. And we took that away from them. But I got censored when I said that on social media. So it's a bit of a rant there, but also like, I think it's really easy for us to be like, like put it on the individual doctor that you can see and touch and maybe punch in the office, right?

2:01:36Like we've all been frustrated that way with doctors before, please don't find your doctor, but it's really easy to be like, that is the problem and not pan out and be like, we have a lot of issues and we still haven't come to terms with talking about them. Yeah. Well, and I think, you know, part of what's driving a lot of gaslighting is burnout may not be the right term for it, but if you look at the healthcare system, Some physicians and nurses and other healthcare professionals are leaving clinical practice in droves because the system is bad as an employee, as someone providing that care. It's not in line with what we anticipated or what we were promised healthcare was going to look like, those healing relationships were going to look like.

2:02:26And when you are burnt out, if you look at the description of those symptoms, one of the first things that happens is you're depersonalized. You're unable to be empathetic, compassionate, to listen, to think with curiosity and creativity. That's what you need when you are a more challenging patient that doesn't read the textbook. You need someone who is not burnt out, who is healthy. You know, like we need to work on healing our healers, I think is part of this whole, you know, paradigm shift that's really, I think, what's needed to help us as, you know, chronic illness patients too. Yeah, we're also seeing the numbers of people going into medical professions declining.

2:03:12People don't want to take out the debt, miss out on 15 years of their life and sacrifice all of that to only have that five to seven minute experience. And I think that's important for patients to hear what you just said. Nobody goes into medicine because they want to gaslight their patients. They want to dismiss their patients. They don't want to help people. Everybody goes in wanting to help people. And there are people that will always, when I say this, they're like, no, they wanted to make money. I'm like, if you knew how much doctors are making compared to how much debt they took out and how much of their life they've given up, you would clearly see that they would have gone into healthcare administration instead of clinical practice.

2:03:57Finance. Yeah. Finance. There we go. Trust funds. Like, no, go a different route. And like, that just reminds me of that like TikTok trend of like, I'm looking for the guy in finance. So people who are listening to this right now, because this feels like really disheartening. One thing that I always say is that when you find a good doctor, like be their cheerleader, tell them how great they are. When you see a person online like yourself, who's going against the grain to do better for patients, cheer them on, give them a follow-up, like share their content, leave them positive comments because people are more inclined to leave negative comments than they are ever positive.

2:04:36We also, that's why Yelp is like, don't go to Yelp if you actually want the truth, because it's just usually people being mad. So that's one thing that I say is like, cheer them on, help them keep going. Because as you already said, when you, you're doing these things and it's not totally in alignment with where, and your colleagues will get there in the next 10 years and then they'll act like they discovered it. They will. I've watched this play out. We get a party about it. 25 years in healthcare. I'm like, this is always the pattern, same pattern all the time. But what else can people be doing to elicit the change to help start making that positive change?

2:05:11Because as a patient, they're not completely helpless in this. First of all, I really appreciate that because I think when you're in the midst of it, those little one-off comments really, gosh, they really make a huge difference. I had a colleague reach out last night from, we share a mutual patient. She wanted to make sure that I was someone who it would be safe to send a transgender patient to come see me. And so I messaged her back, but even that little comment of like, oh, I heard really great things from our mutual patient. Like that honestly made my month. Like, you know, like just that little comment.

2:05:48I really think education is power. Learning as much as you can about how the body works, how the body doesn't work sometimes really helps put you in the driver's seat. I think the other thing that's helpful to remember, I grew up in the Midwest, love little sayings, but we attract a lot more flies with honey than vinegar. And even when we are just so fed up with the system, trying to be and to channel that frustration with a little bit of kindness, especially with the folks on the phone, because gosh, they are just taking it from everyone. That can be really helpful. So one tip that I love passing on, you can ask how long your visit is scheduled for.

2:06:35You can ask the scheduler. You can also ask if there's any potential to be double, like to have two sessions or to ask them like, hey, does doctor and so-and-so tend to spend a little extra time with that first patient or that last patient of the day. So that's another great little tip. And then keep your ear to the ground in support groups. I think that is a really great place to find the names of those folks who may be a bit safer and or maybe worth kind of that extra investment in time, energy, and sometimes, frankly, money to go see. Because our health really is one of the things that is a huge priority, right?

2:07:27And it just makes such an impact, especially just thinking about us as moms, leaders of our families. If we go down, that ship goes down, everything goes down. Yeah. And to your point about, you know, you attract more flies with honey. I think it's very easy to see why a patient would yell, be angry, lash out. And yet you have to remember that you are talking to a human. And if you put them into fight or flight mode, they go into that sympathetic drive. There, a lot of people aren't going to actually fight you or leave the room. They're going to go into freeze and they're going to shut down because they can't, because you might be like, this is the one time I'm yelling at you, but you might be the 10th person that week to yell at them.

2:08:12And now their nervous system is shutting down. What's their nervous system? Their brain. And that's what you came for is the brain. And so I totally like, I feel like there's definitely been in my own doctor's visits where I've had to go and I'm like, I feel like I'm going to war and I have to be super strategic as, as awful as I feel right now, as heartbroken as I am right now and going to war and I don't win this war with weapons. I win it with my mind. And so for people to understand that you can start to shift that doctor patient relationship as well. Trash humans exist everywhere. I want you to know that as well, whether it's your plumber, your, your mechanic, you know, your, you know, whatever it is, every single profession has them.

2:08:56And so that doesn't mean that it sometimes it's just not a good fit. You got to break up. Yeah. So true. Where can people find you? Where are you working with patients right now? So I am based out of Columbus, Ohio. I'm licensed in about 16 different states. Wow. So I'm doing virtually. Yes. So I have primarily telehealth based practice, but do have patients come to see me for the immunotherapy treatment I mentioned. People can find me at drcarawada.com. I also have YouTube channel at Carawatta MD. And I look forward to connecting. Thank you so much for having me on. We'll link to all of this in the show notes so people can find you very easily.

2:09:35Yeah, over on my website, have a freebie. If you want to kind of get inside my mind and think about how an immunologist might think so you can prepare for your next visit, I have a nice resource over there that's for free. Oh, perfect. We'll link to that too. Well, thank you so much for taking the time to share your expertise with us today. Thank you so much for having me. This has been a thrill. Class is now in session. And the UPS Store is here to help you ace arriving on campus. Our certified packing experts can pack everything you need, from desktops to decor. Plus, when you pack and ship with us, you get our exclusive pack and ship guarantee.

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