Leading MCAS Expert Reveals What Doctors Won't Tell You

Dr. Tanya Dempsey explains mast cell activation syndrome, a condition where dysfunctional mast cells trigger chronic inflammation across multiple organ systems. Infections, mold, hormones, and stress can set it off. Treatment involves antihistamines, mast cell stabilizers, and addressing root triggers, though it's not curable.
Chapters
What the heck is MCAs and mast cells? And why do we seem to be hearing more and more about this? And what does this have to do with long Covid or even autoimmune or mold or just random infections and things that we haven't been able to figure out? Is this like the new fibromyalgia, like the bucket that we dump everything into, or is this really an epidemic that we need to be understanding today? I'm really excited to go deep with Dr. Tanya Dempsey. Now, I found her on my own when I was navigating my situation. And if you follow me on social media, you heard all about the hives that I was dealing with. And I was on this mission to figure out what the heck is triggering them. Where are they coming from? And I kept coming across MCAs. MCAs. We're going to talk a little bit about that. And I found Dr. Tanya Dempsey's work in many places, but I had listened to her on Dave Asprey's podcast. I loved the information. I listened to it, like, three times. And then I heard her on Dr. Anna Becca's podcast, started digging through her stuff, and I thought, I've got to have her on for this conversation because I have very specific questions. And she is the go to for this topic. Topic. So thank you so much for being here today.
Oh, thanks for having me. Happy to share whatever I can with your audience.
I. I can't wait to dive into this. And I. I want to kind of start with. I had asked you before we hit recording, you know, what was your background before all this? And you had mentioned that you were an internist. But what was interesting about what you said? And I. I think back to my gosh, years ago, over two decades ago, when I was diagnosed with celiac. And I remember going to my internist and I was telling him all these random symptoms, like, all these things, and he, Natalie, let's focus on one thing at a time. They're all separate. And what struck me about what you said is you said I was an internist, and I saw all these things kind of cascading and colliding. And in that detective mindset, this is what came up. So let's kind of start with that. What did you see? And where did this even come from?
You know, I think I always had this really sort of more holistic view of health. I came from this background. My grandmother, my mother, always very holistically minded. So I think I already was sensitive to that. And then I started, you know, working as an internist. And honestly, I kind of tried to keep my. The two worlds separate. What I did in my life, following diet, working out, doing those things and separating it from what I did with my patients. You know, I was told, you know, the patients, you just got to, you know, put them on medication, fix their high blood pressure, treat one one problem at a time. If they have three problems, you have them come back for the problems. I tell this story because I think it's actually, it's funny and not at the same time. It's actually quite sad. When I was a resident, we had to. We had to work in a clinic where we started to get used to seeing patients, you know, and I would get in a room with a patient and an hour later I would emerge and patients would tell me all these different symptoms. And I would sit there and I would think, okay, they have a headache, they also have stomach pains, and they also have these other symptoms. There must be a connection. I'd be sitting there trying to figure out the connection. I come out of the room and my mentor and attending would say, you know, you know, Tanya, you are not going to make it in medicine if you spend an hour with patient. That's what he said. I think I've done pretty well, actually. Yeah. So I'd like to go back to him at one point and tell him.
That, you know, you're right.
But he said, you can't. You're just, you can't. You got to focus on one symptom at a time and then you have them come back. I was treating the underserved at this clinic. These are people who I never knew if they would come back. Yeah. So I wanted to do everything I could at that visit. Right. And he's like, no, yeah, they'll come back. Even if it's in six months. Six months, they're suffering like this. Right.
Yeah.
So that was always my mindset. And when I started practicing in a multi specialty practice, I was, you know, again, always kind of, you know, reprimanded, like, oh, Tanya, you have to use more Lipitor for your high cholesterol patients. At one point, they were charging me first a dollar a patient and then $5 a patient, taking it out of my salary for patients who had cholesterol levels over 200.
I've heard that.
So that's the truth.
That's not a rumor. That's a real thing.
No, no, that's a real thing because they're in bed with insurance companies.
Wow.
And the insurance companies think that if you have cholesterol under 200, the risk of that person dying is lower. Okay, we can argue. No, I think cholesterol means a lot more than just, you know, dying of a heart disease. But. But in any case, you know, I was starting to really understand that I can't do it in that model. I have to work with the patients. I see all these pieces and how they fit together and. And, you know, maybe the cholesterol is high because they toxicity and their liver is overwhelmed, and that's why they're making more cholesterol. And maybe the cholesterol's not sticking, so I don't even have to worry about that. But what I really need to think about is, you know, the symptoms have brain fog. They have all these other things that, you know, maybe from their mold or maybe from some infection. So I started to really understand that there's so much more to the patients who are coming in. And so I finally just couldn't. Couldn't take it anymore. And I started my own practice in 2011. And so where I can spend time with patients, where I can dig deep. And then eventually, in my own practice, I then figured out this condition known as mast cell activation syndrome. I figured out, you know, with. With help of mentors and teachers, really, you know, that. That my patients were suffering for. From some of these conditions that were really misunderstood. And really, you know, usually the situation where the patients would be made to feel crazy. Yeah.
Before we get into what mast cell activation syndrome is, because there's. There's a lot there. It's seems like every decade, there's kind of a new catchall title for things. And what keeps coming up for me is fibromyalgia. That was that. For a long time, we talked about fibromyalgia. Like, if. If we couldn't figure out what all these symptoms were, it was that. And it seems that then it was kind of the S thing. Like, it seems like there's always this new. This new topic. Help us understand that and then what this is and how this might be different.
Okay, so I'm going to blow your mind a little bit. Maybe, Maybe not. Guess what fibromyalgia is.
What?
Mast cell activation syndrome. Okay, guess what? Cersei's Mast cell activation syndrome or mcas. So the reality is that for decades, we have been seeing patients with MCAs, but not understanding the mechanism of the symptoms that they're having. You know, fibromyalgia patients have. Often have depression, they have pain, they have a lot of. Yes. They have trigger points that are Sensitive when you examine them, but have GI symptoms, they have shortness of breath, they have headaches, they have all these symptoms. And when you start to understand that it is a bigger process, there is a root to it and the root. And I can tell you there's enough research to suggest that MCAS is equals fibromyalgia. I would say the same thing about sirs. And I've had this conversation with Dave Asprey about SIRS and the fact that it truly is mcas. So the way I think about it is that I don't think MCAS is that catch term that now it's this decade and then next decade we're going to figure out something else. Well, I don't doubt we will continue to figure this out and realize that maybe there's more to it than we understand right now, but it is all the same thing, which is really interesting.
Wow, okay. That is pretty mind blowing there. So it's not a different thing, it's just that we understand it more now.
Now.
And then I want to tie it back then into like why this happens to be so relevant post Covid and post and midlife. And then with the mold conversation for sure. But what is it?
Yeah, so it's basically a dysfunction of the immune system. So we have two parts, two main parts of the immune system, the innate immune system and what we call the adaptive immune system. And the innate immune system is considered the primitive immune system. It's really like the first line of defense that your body has against the world, against infection. The adaptive immune system is the part that builds up antibodies, sort of kicks in later and then tries to take over for what the innate immune system has tried to do. Mast cells are part of that innate immune system. So they're primitive cells. They are situated all over the body in places where there's an interface between the body and the environment. So you mentioned hives that you were dealing with hives, Right? That's in the skin. The skin is abundant in mast cells, the respiratory tract. These are all places where again, you breathe in air. That's the environment. So it's the respiratory tract, the GI tract, the GU tract, which is the uterus, vagina, the bladder, the. What am I missing? The pulmonary system and, and the nervous system. And again, there's more. But the mast cells live in these, these locations, again, trying to protect us. And evolutionarily, there's some research that suggests that mast cells were probably for prehistoric humans, probably needed for help with fighting parasites.
Okay.
Fighting some of those, you know, Infections that would, you know, kill them. So again, mast cells are very important, and everyone has them. So I think about. I like to use this analogy of use Covid as an example. So people understand everybody who gets Covid, whether they have this condition called mast cell activation syndrome or not, their mast cells will get riled up with the infection. The mast cells see this, and they will start to react. They will. And one of the ways they react is they explode. They create and manufacture various chemicals. We call them mediators. Histamine is one of them. Okay, Histamine is something that causes itching, congestion, right? People hear of histamine in the allergy world, and that's because mast cells are also the cell that causes allergy. Okay? So when they're exposed to pollen, they will. For people who are allergic to pollen, they will explode. And you get congested, watery eyes, maybe trouble breathing, you know, maybe itchy skin. So the mast cells are situated, again to help us deal with the environment. So for some people, the mast cells reacting in an allergic manner. Sometimes the mast cell is reacting because there's an infection or there's some exposure to a toxin. So with COVID for instance, everyone's mast cells will get activated, and those mast cells will then talk to other cells in the body and recruit them to help them finish the job. In patients who have, nor we'll call them, normal mast cells, mast cells that are functioning normally once the infection is gone, the mast cells actually reset and they just kind of hang out and wait for the next attack. Okay, that's normal. In patients who have mast cell activation syndrome, those mast cells are dysfunctional at baseline. So before the attack of COVID they are leaking their chemicals. These chemicals. And by the way, mast cells can make. I mentioned histamine, but we know that they can make different chemicals. There are cytokines, there are enzymes. They're all different types of things that they make that cause first a local reaction when they explode or leak, and then a systemic reaction. And really, you know, what they're doing is causing inflammation. So people who have mast cell activation syndrome, and we'll talk about why people get mast cell activation syndrome, but people who have that have leaky mast cells at baseline that are already leaking some of these chemicals, causing a baseline of inflammation. Then Covid comes, and that inflammation that's already there makes the infection worse. And the mast cells are trying to help. They're recruiting, they're doing things. But they're also even more activated than the people who had Covid with normal mast cells and that activation, you remember like people talked a lot about the cytokine storm. Well, part of that cytokine storm was driven by these dysfunctional mast cells. And these mast cells will just continue and continue and continue to release these mediators when the infection is done. A lot of these patients don't return to normal. There really isn't a normal. And they don't even return to their baseline which was already not great. They return to a new baseline which is a little higher. And that I think is what's driving long Covid is that they have this continued inflammatory reaction in different in their body. So mast cell activation syndrome is basically dysfunctional mast cells that are releasing these chemicals, causing inflammation. Inflammation is the hallmark feature of mcas. But there are other, two other themes that you can see with mast cell activation syndrome. One of them is we'll say plus minus allergic phenomena. So plus minus meaning some people have this, some people don't. And you don't need to have allergic symptoms to have mast cell activation syndrome. You had hives and itching allergic type phenomena. But there are other people who don't, don't have anything that looks like allergy and they can still have MCAs, but that is not an uncommon thing. So it could be itching, it could be being more sensitive to the environment and having allergic type reactions without them being true allergies for some patients.
So when you look at like what an autoimmune comes from it, and I know being celiac myself, I learned this years ago that an autoimmune, you're kind of like born with the gene, you have the ability to have an autoimmune, then some type of stressor triggers it and then you have that response. Is that sort of similar with mcas? If I'm hearing you like we all have those cells and now you have something that maybe made them go a little haywire or be leaky as you said so in different areas, and then you have the stress on top of it that then makes them like really flare up. Am I understanding that correctly? Is that a similar.
Very, very similar. And, and you know what I, what I say is that I think the majority of people, let's say who get long Covid or have persistent symptoms after mold exposure or have persistent Lyme disease, many of them had a predisposition to a dysfunctional immune system. Whether it's many, listen, I have many patients who carry the celiac gene. Maybe, maybe that's a piece of it. Maybe there are other autoimmune susceptibilities they have. Maybe it has nothing to do with autoimmunity, but there are. There probably is some process that predisposes people. I think that we see lots of family members usually with this. So we know that there must be some genetics to it, but we don't know what the genetics are. I think that in some cases, the trigger, you know, so maybe they didn't have a huge genetic vulnerability that we know of, but they were exposed to, let's say, some kind of traumatic event in utero while their mother was pregnant or some kind of exposure to toxins early in life. There's something that then mutates the mast cell and causes it to come out and then be dysfunctional. And then each event over the course of your lifetime, whether it's different stressors, emotional, mental, physical, or various, you know, again, toxic exposures. And I. And I use that term kind of loosely, but because we really live in a very toxic world. There's so many things that you can be exposed to that that literally just escalate this condition to the point where it is, you know, basically symptomatic. I think of it as like an iceberg that, like, sort of breaks through the water.
Now, when we look at MCAs, I'm going to get into some symptoms and stuff in a minute. So how people listening could know, but there tends to be a theme of anxiety that goes with it. So, like, if you having an MCAS outbreak, I know, like with me, before hives come out, typically I'll feel like my heart racing and there's like a physical anxiety almost that comes with it. My question is, is the MCAS creating the anxiety, or does anxiety in itself create this MCAS response?
That's a really great question. I think. Well, there could be a combination of both, but I do think that it's the mast cell that is driving the anxiety and then driving some of the other symptoms. So when we think about these mast cells, when I said that they're, again, all over the body, they are really at high levels in the brain. They line every nerve in the body. You know, for patients, I always draw, like, here's a wire. This is a nerve. And you literally have these little, like little mast cells surrounding it. And when the mast cells read danger, there's something. Something that they're seeing that is bad. You know, they'll release their mediators. They'll irritate the nerve. Maybe that's one of the nerves in the brain that's then going to, you know, send a signal about neurotransmitters you know, maybe release a neurotransmitter or not. So then all of a sudden there's this, you know, anxiety symptom. And. But that may just be one symptom that the mast cell is causing, and then it may be that that just is maybe your vulnerability to that symptom. Maybe your nervous system is a little bit more sensitive, but then the other symptoms come. Now, the more stressed you are, though, the worse MCAS can get. So I do think it's a little bit of. It does become a little bit of a vicious cycle because we know that stress of various kinds are triggers for the mast cell. We know that the limbic system in the. In the body, in the brain, is. Is responsible for dealing with emotion and other things. And the limbic system, when it's dysfunctional, will drive more muscle activation syndrome. So again, it is a little bit of both. But. But I think if you have anxiety before the hives come out, that's probably just the process of your mast cell activation coming out. But then, yes, it will probably make it worse because you get more anxious and more stressed, and then it feeds back for sure.
So what types of symptoms do when you're. Because you see a lot of people that ultimately it's MCAs and you see this happening. What are those simple symptoms that people are coming and presenting? Like what? I know I had the hives. It's just one thing. But what are the major. Are you seeing?
Yeah, I mean, again, because mast cells are in every single organ in the body. Right. The. The symptoms and the signs are, you know, incredible. I have a slide deck that when I give this presentation, it's like many slides long with lots of different symptoms. But. But if I generalize a little bit. Okay. You know, you can. Again, you start with the skin, let's say. And so it could be hives, it could be other types of skin manifestations, eczema, different types of dermatitis, maybe contact dermatitis, maybe others. The skin is really, you know, a very. You know, it's a large organ and very sensitive. So any kind of skin thing could be related to mast cell activation syndrome, including psoriasis. I do want to talk about when we get there. Yeah. That link between autoimmune and mast cell. Yeah, let's.
Well, let's talk about that. That's important. So let's. Yeah, tell me about that.
You want to do that before we do this?
That's fine. Yeah.
Okay. So I think that there are true autoimmune diseases, celiac being one of them. But there are a lot of patients who are told that they have some sort of autoimmune like condition or they have positive ANAs, they have positive thyroid antibodies, they have like, then they're told maybe it's Hashimoto's, they have positive rheumatoid factor and they, they're told they don't have rheumatoid arthritis, but they have some kind of marker for it. And what we know, and we've, I've actually published on this last year, we have, we wrote a paper on the importance of really understanding the link between mast cells and autoantibody production. And so what happens is, as I said earlier, mast cells talk to other parts of the immune system. And that adaptive part of the immune system is the part of the immune system that makes antibodies. Okay. So you have these B lymphocytes that are producing, they're basically sent a signal and they see something and then they have to make an antibody to it. Okay. If they're fighting an infection, they're going to make an antibody to an infection. But the mast cells can present fake signals and the B cells can then make fake antibodies that are actually not doing anything in the body. They're not actually producing a specific response. And so a lot of people are walking around thinking they have an autoimmune condition or something because they were told they have these positive antibodies, but they don't have the symptoms. You know, they have a positive ana, which would be lupus, but they don't have lupus, they have a positive. So this, I'm trying to distinguish it from celiac. I'm going to explain the celiac part in a second too. But a lot of that is maybe driven by the mast cell sending a false signal. Makes sense. They're already dysfunctional and they're now causing the other part of the Hashimoto.
Because a lot of people say they have Hashimoto's but they don't have the symptoms. So that makes sense. That would be. So it's, it's showing a different thyroid number, but maybe that's what. It's because of this.
Correct. And so sometimes what we see is when we address this underlying mast cell activation syndrome, then the antibody levels come down or go away and then you go, oh, see, that wasn't the case. But in the case of like true autoimmune diseases, let's take celiac, for instance. I see a lot of celiac patients who have mast cell activation syndrome. And so I Can't. I can't prove it. We don't know the. The direct link. But I will say that having an autoimmune disease does mean that there is some dysfunction in the immune system that I think can then feed back into sort of the opposite direction, going from this adaptive immune system that's overactive into this innate immune system and then. And then. And then cause maybe more reactivity of the mast cell. So there is this sort of crosstalk that I think is hap. That's happening.
So I'm certainly not a doctor at all, just a major researcher and detective. And what I. What I kind of linked with that was, is leaky gut. Because if you have celiac, you likely have leaky gut. I mean, from either the damage or you had that ahead of time. But leaky gut is very common with celiac, even when you're not eating gluten. So if you. When you talk about mast cells, they're everywhere and you included the gut. So I, I feel that there has to be a connection with that. Like, if you have leaky gut, you're. Anything, any infection you get anything, like everything is going to get in your system. You're not filtering it out correctly. So they do link together.
Exactly. No. The gut is a huge, huge problem. And as I mentioned earlier, evolutionarily, the mast cells were probably most needed to fight parasites. And where do parasites live? In the GI tract. Right. So that's where there's a really abundance of mast cells. And so the celiac problem itself breaks down the lining, which probably does irritate those mast cells that are in the lining. Then the mast cells then release their mediators, causing more leaky gut.
Right.
More leaking of. Of proteins into the bloodstream that then the immune system has to deal with. Right. And then it becomes a little bit of that vicious. Yeah.
And then if you look at what you do to treat things in the gut. So even, Even like the standard. When you. When I first started looking into hives and mast cell, the standard thing from everybody was, oh, take Pepcid and antihistamine. Okay, well, you take Pepcid. What else are you doing to your gut then? Because now you're stopping the acid that you. That protects you from other things. So it's like, it really is this whole vicious cycle of gut stuff that I see.
Okay, but I have to. Right. But I have to explain a little.
Bit about the Pepcid, please.
I think there's a little bit of a misconception in the functional medicine community, and I want to get this message out and correct people.
Let's do it.
PPIs, proton pump inhibitors, Nexium, pentoprazole, protonics. I mean, you name it, but they're like a bunch of them. Now, proton pump inhibitors are particularly dangerous because they shut down acid completely and they affect absorption of nutrients. Now, there is a subset of mast cell patients who need these PPIs for various reasons. So I would never say you shouldn't take it at all. We do try to limit as much as possible H2 blockers, though. You mentioned Pepcid as one tap is another. Zantac was another that was pulled from the market. But these are. These are. So what you have is you have these histamine receptors all over the body. You have certain types of histamine receptors that are in your respiratory tract and in your skin. They're called H1 blockers. And then you have a lot of these histamine receptors in your gut called H2. Now, if you have an overload of histamine from the mast cells, releasing the histamine, they're going to bind these receptors and they're going to send a signal, right, to cause inflammation, to cause swelling, to cause a lot of things. So the use of this H1 blocker like Claritin, Zyrtec, Allegra, Benadryl, those are all H1 blockers, combined with an H2 blocker like Pepcid can really quiet down for people who have more of that histamine issue. Really quiet down things and really, really can make a difference for some patients. That's a game changer for them and for. It doesn't work. But the important thing to understand about these H2 blockers is that they are very weak acid blockers.
So they're not killing all of your natural acids. You're not going to get parasites all of a sudden because you're taking them. Good to know.
No, I've never seen that. What I would say is that they act for a number of hours. They're not as strong as PPIs, which is why a lot of GI doctors, you know, will not even use them because they know that they can't really shut down the production acid. That's why they go to PPIs. So these are very weak. Now, that's not to say that it may not cause some problems for some people, but I have to tell you that in the vast majority of patients that I treat, I don't see significant nutritional deficiencies, significant leaky gut. And in fact, for many, many patients, it is like a lifesaver for them. So I think we just need to individualize, understand. Right. It may not be right for everyone, but I don't want to discount them and not use them because of this fear where they're equating total sense.
No, I'm glad, I'm glad you explained that. I did not know that. So thank you for that. So let's get. Go back to symptoms now because I want to make sure everyone kind of hears that. I know.
And then.
And also the link of why you mentioned earlier about hormones and how hormone changes tend to trigger a lot of this too.
Yeah. So I'll start from the top and we'll work down and then we'll. The hormones. So, you know, things. Lots of symptoms that a lot of people have could be attributed to mast cell activation syndrome, but it doesn't mean that they have mast cell activation syndrome. Right. So people are listening and say, oh, I have, you know, one or one or two of these symptoms. It doesn't mean that it's MCAs. Most patients have multiple symptoms, multiple parts of the body involved. But headaches will start at the top. Headaches, definitely different types of headaches. Could be migraines, could be tension headaches, could be cluster headaches. But that's a very bad, very common symptom. We see in mast cell activation syndrome. Sometimes increased intracranial pressure with increased cerebral spinal fluid buildup in the, in the brain. We see you can have visual problems, could be blurry vision, double vision. You see ringing in the ears. Another common symptom, working out the head, trouble swallowing, things like eosinophilic esophagitis. People who have issues with their esophagus and inflammation in their esophagus. So affects swallowing, vocal cord dysfunction, respiratory issues, asthma. And different symptoms along those lines can definitely be attributed. Pain, pain syndromes, very common in MCAs. Joint pain, muscle pain, connective tissue issues. So there's a link between MCAS and some other conditions. One condition is called hypermobility syndrome, which is kind of stretchy connective tissue. Some people call it double jointed. But we know that mast cells release enzymes that can break down connective tissue. So connective tissue issues. So sometimes it's stretchiness and more hypermobile. And sometimes it's. People are stiffer actually and they find that they really are can't stretch enough. They just can't. They're. Everything is. Is really tight. That can be a symptom. We see things like tachycardia, rapid heart rate, POTS or postural orthostatic tachycardia syndrome, autonomic dysfunction of various kinds, mass activation syndrome.
Wow. Lots of. Lots, yeah.
GI symptoms. Right. So reflux, ibs, ibd, you know, diarrhea, constipation.
Do people typically present multiple. Like, multiple of these things, or is it, like. Is it really isolated? Like you can have one and it's that.
Right. So I think. Really, you not think? I know that generally, if you only have one system involved, it's unlikely two or more systems would be highly suspicious.
Yes. Okay.
Yeah.
So if you've got random symptoms that you've just been saying how, like traditional internists would do, let's look at one thing at a time. No, if we're looking at all of it and going, I have a bunch of different random things, or at least two or more, then it could likely be linked to this. It could. Like, what do you do about it? What do we do? Yeah, I mean, there's a lot. What do we do about it?
Well, let's talk about hormones for a second, though, because. Because. And then we'll. We'll talk about treatment. But I think it's important because there are a lot of mast cells in the. So if we talk about. For women, in the vagina, in the uterus, we know that mast cells are actually very important for implantation, for implantation of an embryo to develop into a fetus. We know that mast cells are part of that process. We know that mast cells are involved in that process of shedding of the lining during a woman's period. So we know that these mast cells are interacting with hormones. We know that the mast cells, I mentioned that they can explode and release these different chemicals. But the reason that they can read the environment is because they have a lot of different receptors on their surface. I think of receptors as like. Like satellites. They're basically like scanning the environment. And they have receptors for estrogen, they have receptors for progesterone. They have receptors for testosterone. They have receptors for so many, many things that are internal or in our internal environment, we'll say not just the external environment. And so mast cells are known to read changes in the body. And so if we think about the shifts in hormones, let's say in puberty, this is a very common time when we see girls starting to present with symptoms that are suggestive of MCAs. You could certainly see it earlier in boys, too, by the way. We see this sort of in this age range between 8 and 12 or whatever. You know, for puberty can be a little bit different for boys and girls. There can be an uptick because all of a sudden the body's being fed, flooded by different hormones. And if there's a susceptibility in the mast cells to be dysfunctional, they'll react. So we see puberty as a very key time when there may be a shift around pregnancy as well. And after delivery for women often is a very difficult time. Pregnancy sometimes actually is better because the hormones are very steady. And then all of a sudden the hormones drop off and that's when a lot of women start to have, have issues. And then, of course, perimenopause, where there are the large shifts of estrogen going up and estrogen dominance and estrogen going down and progesterone going down. And progesterone can be a mast cell stabilizer, actually. So progesterone can be actually good for the mast cell. For some patients, estrogen can be a little activating. Testosterone could be either. Depends on the woman. So. So we asked about treatment. So sometimes managing hormones is actually part of the treatment because that's part of what is making some women more susceptible to symptoms. And so perimenopause is definitely another time. When I see tick, you know, if I think about the patients in my practice, I have this, like, group of adolescents, and then I have this group of perimenopausal women that's like. And they are, you know, the ones that are suffering the most.
Right.
So I think hormones are really, really critical. I've done a number of podcasts on hormones if people want to listen, because I have my own podcast, so if people want to, like, dig deeper into the hormone piece, but it is part of the treatment. So you, you mentioned.
I want to ask you about that real quick because you, you mentioned progesterone and estrogen, and I think that's misunderstood by many people too. I know just from sharing publicly about the hives, a lot of people were saying, oh, you need to up your estrogen. And I, I found exactly what you said. You said it's the opposite.
It's you. It's.
The more estrogen, the more you can create an issue. You want higher progesterone. And so I like, for me personally, I raised my progesterone, I lowered my estrogen as part of managing this.
See, and that was like intuitive, right? You just, you just feel that and that. And that is what, what it looks like in the scientific literature too.
So what do people do about this? And is it, is it permanent? And where, like, I, like, I, I'll. The same supplements I kept Finding and let me just. I'm going to throw them out to you because maybe you're going to tell me. These are. I kept hearing about pea chromalin, KPV and dao. Those four things. Are those specifically for mast cell.
They have their place for sure. And I think with each patient, I mean, you know, my, my center is called AEM center for personalized Medicine. So I will say that I use all those things, but they're not necessarily right for everyone. And I don't always use all of them at the same time. Right. It's really trying to figure out what the, what the problem is. We do testing now. The testing can be helpful because while we can't test for 1200 different chemicals that mast cells make, we can test for a couple of handfuls if you have, let's say more of a histamine problem. And histamine keeps coming up high. So then I'm going to look at things that really manage histamine. Dao, which would manage histamine in the gut. Diamine oxidase is a enzyme that breaks down histamine in the gut. I'm going to look at different kinds of antihistamines, whether they're, as we talked about, H1 or H2 blockers. There are other drugs. There's a drug called ketotifen, which is a partial antihistamine and a partial mast cell stabilizer. Quercetin is a mast cell stabilizer slash antihistamine. Vitamin C is also an antihistamine. So again, I might target people differently based on what I find as, as maybe one of the mediators that they're making. Sometimes we don't, we're not able to identify what their mast cells are making. And so some of that is definitely trial and error. So we just have to try and see how people do.
You said quercetin and vitamin C and I want to say that that was the first thing I started loading when I started having mine and I actually got worse. And then I learned, have you heard this, that if you have the calm tea DNA warrior gene, which I do, it's actually creates more panic and anxiety. So I, that was absolutely doing that for me. So got rid of the course tenant.
Vitamin C. So you're medmet for comt?
Yes.
You have the negatives? Yeah, I think it's a big issue actually. And I can't say I test everybody for comt but I do test a fair number if I have suspicion. And I, I and they want. Sometimes patients are like, I Heard about quercetin. I want to try it. And sometimes we'll just say, all right, try it. Let's try it slow. You know, you'll. You'll know if this is right or wrong. Sometimes we test just to. Just to make sure, but yeah. So the comt enzyme is responsible for basically breaking down various neurotransmitters, various catecholamines, we call them. So catechol O methyltransferase and quercetin. There are a number of actually different supplements that slow that enzyme down. So if your enzyme is slow already and you have a tough time breaking down dopamine and breaking down norepinephrine and epinephrine, you're definitely in that state of a little bit more heightened. Your nervous system is definitely more heightened. Yeah. You slow it down more with quercetin, you're going to feel awful. Yeah.
Because I used to wonder why I would get an IV and feel like people would get these, like, wellness IVs. And I'm like, I feel terrible. It was because they would add coursein. So I've noticed that, like, I could take course and call it once a month or what. I could do it fine then. But when I start doing it daily at highlights levels, it's a. It becomes a big problem. So I wanted to point out.
Yeah, I'm sorry, go ahead.
I'm not. Because I know that's not like a lot of people have that gene. So it's, it's, it's again, listening to your body and making sure you're working with somebody that understands that.
And I will say that the other thing that I sometimes see with quercetin, even in people who have the opposite problem with their comped, where their compt is really fast, theoretically, quercetin should help. Help. People who have really fast comps are lower in dopamine. They definitely have more executive functioning issues. So sometimes we're looking for ways to increase their dopamine. I do have patients even with that. They still don't do well with quercetin. And maybe the shift in those chemicals still doesn't feel right to them. Sometimes the mast cells themselves. Cells don't like a particular compound. Yeah. Or they don't like what it's mixed with or they don't like. I mean, these mast cells are so fickle. So I think it's important to say that sometimes we can identify the reason why people react to certain things. And sometimes we don't know.
You don't know? Yeah. Wow. What do. Okay, so you mentioned you do a lot of testing for this, but, like, what is there? There's no tests for mast cells, I mean. Or is there? I mean.
Oh, yeah.
What do you do? How do you test?
Well, so. Well, we. We've set up a whole lab here in my office in New York, where. Well, so. So the issue is that these mast cells make these different mediators. If you have dysfunctional mast cells, as I mentioned earlier, they're leaking these chemicals all the time. And so theoretically, we should be able to pick that up. And so. So there are some tests that could be done in the blood, and there's some tests that can be done in the urine. And so we do a blood test test. We can test histamine in the blood. We can test something called heparin, which is a blood thinner. NAS cells are the only cell in the entire body that can actually manufacture small amounts of this blood thinner. There's some relevance to that when it comes to dysfunctional uterine bleeding. Women who have a lot of bleeding may be making more heparin. Their mast cells may be making more heparin in their uterus, and that the heparin is causing them to basically hemorrhage. So we measure heparin in the blood, histamine, chromogranin, a tryptase. So there are a few things that we can measure in the blood, and then we can measure these other chemicals, basically metabolites from certain things that mast cells make in the urine. But everything has to be handled very carefully. These chemicals are very sensitive to the heat. We call them thermo labile. So the heat, any kind of change. So we have a whole system here of. We have something called the refrigerated centrifuge. So it keeps the blood cold. We have to make sure the urine is cold. We have to make sure it gets to the lab. So the reality is that there are some places in the country that are equipped to handle this, but a lot of people will not be able to get a diagnosis because they can't get to a center. Right. So I do think that there is a clinical way of diagnosing for a lot of people, and we've got to do what we can to help people.
And if I'm hearing you correctly, if you find out you do have this, it's. It's. It's not as simple as the way people look at things like high blood pressure. Take this pill. It's not. It's not about. Here's a pill for that. It's a. It's detective work. It's like, okay, this is what's going on. But now we got to figure out where the triggers and start adding and removing things. That's. If I'm hearing you correctly, it's not like a one protocol for everybody.
Right? And that. And that's the challenge. You know, one of. One of the things that I'm. I'm working on, but I. But it is challenging is putting together a protocol. People ask all the time, you know, where do I start and how do I do this? But. But literally, you know, there's, like, arrows going everywhere, because if this happens, you got to go this way, and if this happens, you got it this way. But eventually, I'll put something together that I think will help a lot of people. But, you know, what I say is this, that the step one is identifying triggers. There's a reason the mast cells. So, first off, you know, again, there. There are a lot of people around that have dysfunctional mast cells, but they're not particularly symptomatic. Okay. So if you look at the numbers, there was a research study back in 2017 that estimated that 17 of the population has mast cell activation syndrome. That's pre Covid.
Okay.
I would argue. Okay. A lot of people, I say this on social media, and people like, hammer me. They're just like, how do you know? And where's the evidence? Well, I can tell you just based on my patient population, but I can tell you that we do have some evidence in the literature that the numbers are going up. So if it was 17% in 2017, maybe now it's close to 20%, maybe more. One in five people, right, could have muscle activation syndrome, But I think there are some people who are walking around fairly asymptomatic until there's a trigger or multiple triggers that brings it out. Right. And a lot of patients will say, I was healthy until X happened.
Yes.
And then Y happened, and then Z, and then I'm really bad. So I think the key really is to figure out those triggers and if any of those triggers can be reversed. So if the trigger is mold and you moved into a new home and you started getting sick and you're still in that home, you've got to figure out how to get out of that home. You've got to figure out how to eliminate or remediate or test or. You know, there are a number of things that need to happen. If. If the trigger is a tick bite and. And you have infections from that. Like, you've got to treat, you got to treat infections. Now, sometimes you still have to. A lot of times you still have to work on the mast cells. You're doing kind of things simultaneously. You're working on triggers. You're trying to figure out, you know, is there something you're taking, something you're eating, something you're doing. There are lots of types of different levels of triggers that. It does require a lot of introspection, a lot of research on your own to figure that out. But we're also at the same time trying to figure out how to stabilize these mast cells to relieve the symptoms and get people back to their. To their baseline. So I think there's a lot of hope. Here's the thing, right? You ask this question, is there a cure or can you reverse it? And so what I would say is this, that I think. I don't think so. But. But that doesn't. That shouldn't come out negative.
But that's like celiac. You can't reverse celiac, but you just don't eat gluten and you're fine. So.
Exactly.
Like I don't look at the problem. Yeah, I just don't have gluten, so.
Exactly. There you go. Same thing here. I think you can return to a better baseline. We have more tools than ever in trying to treat this. Right. So we have sort of the standard meds, we have the supplements you mentioned. But now I'm using things like plasmapheresis, which is really exciting, Therapeutic plasma exchange, TPE in patients who have various triggers that are driving mast cells. So we can remove, potentially, we're doing studies on this right now. Microplastics, mycotoxins, different toxins in the blood. If we can remove that, can the mast cells kind of return back to a more normal state? And we're seeing that already in our practice that there are some people who, when we are able to remove toxins in this way, is probably the most aggressive way to remove toxins. Sure, you can. You know, there are other detox methods, but that is one of the. The tools that I'm really excited about because I think that, you know, it will hopefully move the needle more than. Than a lot of other things, but we'll see. We're doing studies. Yeah, we're trying to. We're trying to get the data.
Yeah, I had seen you had done a post, something about it not being reversible and people got all, you know, flustered in the comments. But I kept thinking about that with the Sealy guy. I mean, same thing with type 1 diabetes. No you cannot reverse it, but you take insulin and you're fine. So it's like. It's like the knowledge is sometimes power. Like, you have the knowledge that it's something, and now we just have to. To manage with that.
You mentioned. I love that you said that, because I say that all the time to patients. Knowledge is power.
Yeah.
Right.
I have a long line of autoimmune in my family, so I think.
So. I. So I just.
I think I've been conditioned that way. Like my sister's type one. I'm celiac, so it's like, I just. I. I know, like, the knowledge is power. Like, I was very sick before I gave up gluten. Two decades ago, I gave up gluten. I never had an issue. So it's like, it's. It's. That MCAS is a whole new learning. And I don't know that I'm. I'm fully. I mean, I think I am having an MCAS reaction. I don't know if mine is more stress, cortisol, hives. That's a whole different topic. But nonetheless, it's a mast cell reaction. I see that.
So.
And I think that more people are walking around with this than. Than.
No.
And it comes back to my passion about women being health detectives. So we have that knowledge. You've mentioned mold a few times, and that's a whole other rabbit hole there. But is it even possible to avoid mold? Like, I feel like it's everywhere. Like, you stay at a hotel, there's more like. And it feels like everywhere I turn around, someone had mold poisoning. I lived in a house of black mold. Like, there's mold everywhere. How do we do we all just go live in the woods in a tent?
What do we do? Yeah, let's do that. And I definitely have patients who have to have tried that. I mean, not to be funny. I mean.
Oh, I know. I know someone who's doing that right now.
Yeah, yeah. No, it's. It's awful. So I think there are. There are a few things to. To consider. I think that humans have been exposed to mold probably for forever. I do think that the materials that are being used to build homes, hotels, buildings, etc, are worse. Okay than never. There is the type of insulation, the type of the. I don't even know all the building terms, but there. But there. But these things can. Once they get wet within 24 to 48 hours, they're. They're, you know, accumulating mold. What I think happens is that I think there's the amount of exposure for some people. So some of it is just time and the. And the amount. Some of it is susceptibility and vulnerability. Some of it is like the perfect storm of they are exposed to mold, but they also have lyme disease and bartonella, and they also have maybe some other underlying comorbidities. And then the mold is just, like, the thing that just pushes them over the edge. The reality, though, is what I find, at least in my practice, is when you recover the immune system and you get it to a place where it is kind of understands, okay, this is mold. But, like, okay, it's not going to kill me. Right now, what we find is that people do react to mold less. So they can be people who literally walk in the door and smell it and are just sick for weeks after, and they can turn into people who are like, yeah, I know there's mold here, but I think I'll be okay for a couple hours, and then I'll go home and I'll detox. So I think there are people like that in both camps, but I think you can get people to a better state. And I think the reason there's so much, so many people sick from mold is, again, partially because I think we do have this, like, epidemic in the building materials causing it, but also because I think that our bodies are more susceptible because of all the things that have happened up to that point. So, again, whether there's chronic infection or Covid or these other, you know, Lyme or whatever, or traumas that have happened over the course of their lifetime, and it could be medical trauma, could be, you know, physical. Physical, you know, sexual, whatever. Like, trauma is. Is really, really, very, very serious issue that I think sets people up for chronic disease, including mast cell activation syndrome. So, again, I think there's the setup, and then there's. And there's the exposure.
Yeah, because does that make. Yeah, no, it totally. And that goes back to kind of where I've. My brain has gone lately is that trauma, nervous system, gut, kind of the root of everything. And then we look at all these other things, But I really think we can't skip over those things. Right. Like, there. We can't just keep saying, oh, it's mold, or it's this, or it's like the trauma and nervous system are really there. And, you know, when I lived in a house with black mold in San Diego that we left and we love in Scottsdale, and my husband had a lot of physical symptoms when we were there, I had none, but he had the physical. But when we did the toxin test later, I'm the one who showed all the stuff in me, and he did not.
Not.
So it was interesting. Like, his body was almost, like, getting rid of it as we were in it. But what I remember about that testing is we had someone come out to the house and test, and they test as a comparison outside. So they do your house. And they do. And outside had way more mold.
So when I.
So that's where I kind of challenge this whole, like, I'm just gonna go live outside or what? Like, I don't know that we can fully escape mold. We have to figure out why is our body holding on to it, why are we sensitive to it?
It.
Are we, you know, how much are we exposing? But like, to say we're going to plea completely mold free. I just don't think it's possible if we live on planet Earth.
I don't think so either. But a lot of these mold testers are not doing the right testing, and that drives me crazy. They're doing air testing.
Okay.
And they're saying they're standing in the middle of the room. Right. And they're measuring the mold in that air, and then they're going outside, and they're measuring the mold in the air outside. But mold typically doesn't live in the middle of your living room. Mold lives in. In. In crevices behind drywall. Yeah, Correct. And. And then there's mycotoxins that are being released by the mold and other bacteria that sort of live there that a lot of mold testers are actually not testing for. And so people get a false sense of security. They say, well, I did the testing, and it was worse outside. I hear this all the time. It was worse outside, they said. So I. I must be fine.
Right?
I'll just not live outside. I'll be fine. We did both, by the way.
We did both. Were there. They swabbed. They did all the stuff in the walls, too. That's how we found it. Yeah.
Okay, good, good. But that drives me crazy.
Yeah. But I want people to really hear that it's not just about getting a diagnosis for mcat. Like, I think it's great. Like, I. I would want. Would love people to go to you, and they. They learn this and understand it, but it's so much more than that. Like, why were we susceptible? That, like, that's the questions I've asked myself. Like, it's. It's not random that I happen to be celiac and I had a ruptured implant and I Lived in black. Like all this stuff cascades. Right. But I have to go back to nervous system and trauma. And I think that's the root of everything with everyone. Honestly, like, we have to look at that and our bodies can only handle so much. You know, I'm 54, and I think of women as we age, like we've had years and years and years and years of this pile up of stuff, of just this load of things. It just eventually it's going to 100.
100%, I just think. Right. And we live in a time that is like really the worst. Yeah. You know, know worse than ever. And I think that with each generation, what makes me sad, I try to be optimistic and I, and I just hope there are enough of us who can make a difference. But I think the next generation, like my children are definitely at even higher risk for things. And, and when I, you know, I take care of, you know, one of the things I love about what I do is because I think it's because I come from an internal medicine background. I just really love to take care of families.
Yeah.
And you know, often what happens. I'll see. I'll see. Let's say the mother will come in, you know, perimenopausal, having issues, and she's like, oh, but my daughter, you know, and then my mother. Right. So I have, I have families that I take care of like three or four generations of. Right. Which is, which is just really like beautiful and so honored to care for them. But what we see, which is really kind of sad to me is that that the, the healthier of the family members, usually the older one. So like the grandmother has issues, probably has some MCAs, but really is pretty good, you know, dealing with some things maybe related to age that maybe wasn't taken care of sooner. You know, maybe not a longevity person who's thinking about it. Right. So some arthritis and some other things. Then the mother who's, you know, in. At our age range in the fifth, in their 50s, is like, like a little bit worse. You know, struggling with some things, but still able to sort of push through, working on finding ways to improve their health. And the kids tend to have it worse.
It makes sense. But nervous system is the commonality there, if you think about it too.
Yes. More.
More phones, more Internet. I mean, that's a whole nother. I think of my daughter's general, like just this, how their nervous system doesn't get a break. We had, we didn't have that in school. We didn't have that Growing up, we had. We were outside, we had natural light. We didn't have LED lights. There's so many things. So I do see that that's getting worse. A lot with that, too. Tell us some good news about, like, because I. Because you've spent so much work, so much time, and we're seeing so many patients give us some success. Like, what can people expect that are, like, suffering with this when they actually dial this in?
Yeah. And again, you know, we're talking about different triggers and things like that. Right. So my approach to MCAs is I am working on that piece because I do think that sometimes that is the key. You give them some muscle stabilizer, you do something, their immune system kind of gets back into gear. I'm always working on their nervous system. I'm always working on their limbic system. And I'm so glad that you mentioned that, because I realized more and more how important that piece is. I cannot do this work. And I tell patients all the time now, even at the first visit. It. We're going to do a lot of things. We're going to look for Lyme. We're going to look, you know, for mold. We're going to do all that stuff. We're going to look for nutrient deficiencies, and we're going to fix all that. But if we don't start working on your nervous system, even if you think you don't have a problem with your nervous system, we will hit a wall. And I need to get the buy in, because sometimes you're right. Like, that is the key. You know, they start doing a program, you know, limbic retraining program. Sometimes those programs are great, like Primal Trust, Gupta DNRs. There are a few of them. Sometimes they need vagal nerve stimulation. Sometimes they need grounding, sun and. And all of it.
Me, I need all of it. I will tell you if anyone's gonna protocol their way out of something. I did that. I was like, I've got this.
I will protocol.
I will remove every food. I will. That's what I was doing. And my stuff was getting worse until I literally had to look at my schedule and go, okay, okay. It's not the food and the protocol right now. This is me. So what am I going to do to my schedule? What am I going to start paying attention? Like, what am I going to do with my breathing? What am I going to do with. So I had to literally. And I'm still. I'm more. I do not have this mastered at the time of this recording at all But I have the awareness around it, which is a big step. But there is no way there is not a person more rigorous than me when it comes to protocol, and I could not protocol my way out of it. So I really believe there has to be a massive interruption with schedule, with vagal nerve, like, all of it. I mean, so, yeah, I think it's.
I know. I. I agree. And. But the. But the. But again, like, the reality of what I see in my practice is that I get so many people better. Right? This is. This is the thing. So. So when I go on social media and I say there's no cure, people are thinking like. And I try to tell them, like, but it's not. You don't need cure, you know? Yeah. What you need is, you know, improve. Improve quality of life. Mast cells just being quiet. I don't care if they're cured. If they're quiet, they're fine. Let's leave them alone, you know? But I do think it's a multi pronged approach. It's a relationship with. With your practitioner, with your doctor, whoever you're seeing. For you, I mean, obviously you have resources and you're doing a lot on your own, but for others, you know, I do think there is a special relationship that I do think fosters trust and then fosters the ability to get better. Right. And I had this amazing day the other day, I think it was Monday, where I just. It was one of those days when just like, every patient was getting better and every patient. And I had a nurse practitioner shadowing me. And I get a lot of practitioners coming in and wanting to learn from me. And so the patients know that if there's somebody else there, they want to, like, share their story. Right? So. So every patient. And she, at the end, she was like, wow, like, I wanted to cry because every patient's like, if I hadn't met you 10 years ago, Dr. Dempsey, I don't know where I would be. And do they still have some things that we are tweaking and working on? But don't we all? Like, I'm. I never stop working on myself. There's always something better that I want to feel or do, or. So I think about it as this. You know, some of those patients, yeah, you know, they've been working with me for 10 years. But, but, but you can't compare. I mean, they're functional, they're doing all these things, but they know they can be a little better. And they have sometimes setbacks because life is hard. And so we. I help them with their setbacks. And we, and we, you know, we look to the future and how we can improve things and, and so then like that's the, the reward, the reward I get. Just amazing. So there is so much hope and I think, you know, that's what we need to leave people with. Like, like there are we, there are. We definitely don't have all the answers. That's, that's the problem. But I'm going to keep figuring out the answers. Like I'm committed. Right. That's why I do research. That's why I do the things we do because we will find, we will find more answers to help more people.
Where can people work with you from all over? Do they have to be in New York? Tell us how that and where can they find you?
Yeah. So my practice is in Westchester County, New York in Purchase, New York. AIM center for Personalized Medicine. And I have a website, Dr. Tanya Dempsey.com and of course social media and then my podcast, which I'm really, really happy with because we've gotten some great reviews and I'm really excited about the guests we've done and some, some of the guests we have coming up, it's called mast Cell Matters and we talk about mast cells, but we also talk about a lot of things kind of related in the world of chronic complex illnesses. So right now I had to close my, my practice directly. You know, people seeing me direct. I have other practitioners here in my practice and I'm bringing on some new practitioners in the next month or two, which I'm really excited about. And so I will be involved in a lot of patients cares, but not maybe not directly right now hoping to open my own practice, my own patients again in 2026. But right now people can reach out. We're trying to really get more. We do telemedicine, we do a lot of those things. Things but do have some rules that you have to follow like you have to come in, in person for the first visit and, and things like that. But people can find out more. But the, what I'm trying to do is really train more people. If anyone's listening and is a nurse practitioner, a pa, an md, a do, and they want to do this type of work. Come on over. You know, I'm, I'm hiring but we are, I am hiring some really great people who will, can, you know that that'll train and they're already well trained who can continue the work that I'm doing and because we have to.
Well, thank you so much for doing this. And I will say such timely. You know, they always say that when you're ready, that when the student's ready, the teacher will appear. But it's wild because I went down this whole rabbit hole of this and your name just kept popping up. So I really do appreciate how much you're sharing and how you've dove into this and you made it. A lot of you made it a lot easier for people that are navigating this to learn. Any, like, words of encouragement you want to give gives the person listening that's like, wait, this. I feels like you're speaking to me. If you had to tell them, like, one sentence or two on, like, what you want them to know, what would you tell them?
Don't be scared. You know, the fear is real when you're dealing with an unknown because these symptoms with. That people have with MCAs are. Can be scary, especially if there's. We didn't even talk about people who get anaphylactic, Anaphylactic or anaphylactoid and they can't breathe. So. But don't be scared because there are people out there that can help you. That's number one. Number two is continue to advocate for yourself. Always, you know, listen to pot. Like, this is an amazing, you know, you're an amazing resource for people to learn from, especially with your journey of their other resources, my resources and others, other colleagues and, you know, just, you know, do whatever you can to learn and find, you know, find a medical practitioner who's willing, even if they don't know this, who's willing to learn from you and from others. You know, I get calls all the time like, you know, from others who want to learn, like, I'll teach you. I'll teach everyone. I can't, you know, treat everyone. So. But I think the main thing is just to really just realize there are answers there. The answers are there.
Thank you.










