Dr. Dempsey is helping us to launch a new series within the POTScast focusing on all things mast cells. These cells are an important part of the immune system and are found throughout the body. Learn more about what happens with these cells malfunction!

You can read the transcript for this episode here: https://tinyurl.com/potscast115

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EPISODE TRANSCRIPT

[00:00:00] Jill Brook: Hello, Mast Cell patients and lovely people who care about Mast Cell patients. I’m Jill Brook, and this is our first episode of Mast Cell Matters, where we go deep, so deep, on all things related to Mast Cell Activation Syndrome, also known as MCAS. This is such an important topic affecting millions of people, many who don’t know it, many just since COVID. And so I am just thrilled to be joined by one of the all time smartest, most experienced, most accomplished and most knowledgeable Mast Cell physicians of all time. Dr. Tania Dempsey is a Johns Hopkins trained physician specializing in complex chronic disorders and immune dysregulation. Her medical clinic in Purchase, New York attracts patients from all over the world. Her partner is Dr. Lawrence Afrin, who wrote the original book on MCAS. Dr. Dempsey has published numerous peer review medical articles about MCAS. She presents all over the world educating her peers, and she is just so compassionate, dedicated, fun, and wonderful at explaining complex concepts. As a Mast Cell patient and researcher myself, I love listening to Dr. Dempsey speak because I always pick up new nuggets of wisdom. Dr. Dempsey, thank you for joining us today.

[00:01:25] Dr. Tania Dempsey: Oh my goodness. Jill, thank you so much for having me, and thank you for the beautiful introduction. That was very touching. Thank you.

[00:01:32] Jill Brook: Well, I’m so excited about our plan because our plan is that I’m gonna interview you for the first few episodes to review the MCAS basics, and then you are going to interview some of your colleagues, the very top MCAS experts in various fields and specialties for future episodes, right?

[00:01:52] Dr. Tania Dempsey: Exactly. I am so excited to be doing this and to really do that deep dive, that we don’t have the opportunity to do at other times or in other places. And so this is going to be chock full of lots of knowledge and and lots of perspective and hopefully just to help all the listeners, everyone out there understand themselves better and understand people around them who are dealing with this disorder which obviously affects a lot of people.

[00:02:18] Jill Brook: And I think people are gonna be amazed by how much deep information there is. The psychiatry, the GI specialty, the every specialty, and we’re gonna cover it all. But since you will be our guide for much of this MCAS exploration, what else should listeners know about you? Like, for example, how did you come to be an expert on MCAS? Did your teachers at Cornell or Johns Hopkins teach you about it?

[00:02:44] Dr. Tania Dempsey: No, unfortunately. I don’t think I ever learned about Mast Cells in medical school other than maybe it was probably a 30 second comment about, white blood cells and probably Mast Cells were mentioned. But I had really no idea how important these cells are to our immune system and how important they are when they work normally, and how important they are when they work abnormally and the obvious manifestations that can occur when they’re dysfunctional. So the point is, I didn’t learn about it in medical school. I certainly didn’t learn about it in training. But because of the type of person I am, and physician I am. I’m always questioning, I’m always thinking every case is important to me. And I will scour the literature. I will think about the case. I will talk to colleagues. Because I’m always looking at every patient in this very holistic way. Holistic using the word w h o l e, right? The whole body. Looking at them from that whole perspective. I’ve always done that. And when you do that and you keep your eyes open inevitably you’re going to start to discover things that maybe other people haven’t been thinking about. And so, I had a patient back in 2014. She started having numerous issues that were new for her in some ways, in some ways a repeat of what she might have had before. And I just couldn’t wrap my head around it. There was something we were missing. She wasn’t getting better. And I remember reading something online about Mast Cells and their role in the immune system, and it was like the light bulb went off. And I said, wait a second. I remember having the appointment with her where I brought this concept up and I said this is just starting to be talked about. It doesn’t sound like there’s a lot of people who really understand this. But I wonder if you have this condition called Mast Cell Activation Syndrome. And so she went home and she did a little research on her own, and she had a family member who actually had some kind of connection to Dr. Lawrence Afrin. so she said to me, would you mind talking to him about my case and see whether it makes sense to start testing and whatever? So, sure so I was thinking to myself, really there’s somebody in academia who’s gonna just take my phone call? And she’s like, yeah, apparently that’s what he does. And a lot of people know who are listening, who’ve interacted with Dr. Afrin, he is incredibly generous with his time. And it’s always about helping others, right. So anyway, I call the office, I make an appointment, it was like seamless to make this appointment and I kept saying, you sure you’re not gonna charge me for this. No, no, no. We’re gonna have a discussion. He’ll go over everything with you. So we spoke for probably an hour, maybe more, and I think my jaw must have dropped. I just was listening to everything he was saying, and it just all started to come together for me. And I thought, all right, I think this patient probably has it. Let’s do the testing he’s recommending. The testing is very challenging. So we started to work through this. But the point is that first patient really opened my eyes, my conversation with Dr. Afrin and then starting to read the literature, starting to understand, and every patient that I saw after that, I started to pay more attention to the immune system in the realm of Mast Cells. I’ve always was interested in the immune system, but I thought about it from an autoimmune perspective. I thought about it from an immunodeficiency perspective, but now I have these cells that are actually potentially impacting both of those things and more. Now I can’t delete that lens. It doesn’t mean that I think everyone has MCAS, but I’ve learned through my interactions with patients, my interactions with my colleagues, and my reading of the literature that this is an important, very, very important syndrome that is often underdiagnosed. And unfortunately patients are not taken seriously enough. I taught myself in a way, and I’m grateful for Dr. Afrin’s guidance as well. And now of course, he’s with me, working with me in the office, which is amazing. That’s a whole other story in itself. But, I’m happy to be working with him.

[00:06:44] Jill Brook: Well, you two are a dream team and we are so excited that you’re gonna help us all get this lens to understand Mast Cells better. So let’s dive into it. What the heck are Mast Cells?

[00:06:56] Dr. Tania Dempsey: Yeah, what are they? So they are white blood cells but they are white blood cells that actually reside in your tissue and organs. You have white blood cells that live in the bloodstream. there are certain white blood cells that are in the bloodstream ready to fight infection to help us in various ways. But Mast Cells are not in the bloodstream. They’re in, they’re in the tissue, and they’re in tissue in the body that is in direct contact with our environment. Because Mast Cells are really our soldiers, our first line of defense against the world around us, whether it’s infection or toxins or anything that could potentially be dangerous to us. The Mast Cells are positioned in these areas of the body so that they can react when there’s something awry. They are in the respiratory tract, you breathe in the air from the environment so they’re in that area, of course, all the way down the respiratory tract into the lungs. They’re in the GI tract, all the way from the mouth, all the way down through the other end. They are in the skin, which is of course in direct contact with the environment. They’re in the nervous system, in the heart. I mean, all vasculature the veins and arteries and the brain. Honestly they’re everywhere, right? So you can imagine how important then they are to both normal like functioning of the body and then abnormal functioning. We’ll talk about all that.

[00:08:22] Jill Brook: Okay. Absolutely. And so when a Mast Cell is working properly, what does a Mast Cell do on a day-to-day basis?

[00:08:32] Dr. Tania Dempsey: They have a lot of different functions. We know that they’re involved in what we’ll call growth and development. We know that they produce various growth factors and we’ll talk a little bit of how they react. But Mast Cells, to defend us from the environment, they make a lot of chemicals. We call them mediators. And some of these mediators are important for prevention of osteoporosis, they’re important for growth and development during various stages in a person’s life. They’re important for, let’s say a woman who’s pregnant and they have a important role in the uterus and in the placenta. Of course they’re also helping protect you from the environment. So when they’re working normally and there’s a virus that they’ve encountered, or a bacterial infection or a parasite infection, they’re ready to go and there are a couple different ways they react, but one of the ways they react is they see the foreign object that’s bad. They explode. We call it de granulate. They release these granules of chemicals that are inflammatory. And so they’re attempting to kill what they’ve come in contact with. And some of that is good. And when they do that, they also talk to other cells in the immune system and they recruit them. They say, all right, hey, come. Here, I need you to help me fight off this bacterial infection or viral infection or whatever. So Mast Cells are important. They need to, interact with other cells. We need that. So, sometimes what seems to be good may not be good all the time. And so sometimes these chemicals that get released are so inflammatory that if they’re being released in our organs, in our tissue, in our skin, wherever it is, those chemicals then can actually damage or cause inflammation in our body. So while it’s fighting off a virus, let’s say, it also is causing abnormal inflammation, and maybe that leads to asthma, difficulty breathing, or maybe it leads to stomach pain or stomach inflammation, diarrhea, constipation. We’ll go through a list of symptoms. The point being is that there’s like a fine line where there’s normal Mast Cell function and then what can happen if there’s abnormal Mast Cell function. So it’s not abnormal for Mast Cells to react to viruses or whatever. What’s abnormal is if a patient’s Mast Cells are dysfunctional already, they may be reactive even for things that they shouldn’t be reacting to, and then they have additional triggers, and then those Mast Cells become more and more and more activated with time. So the problem is that normal, they can be good, but they can also backfire. But if a patient has a normal Mast Cell and they, let’s say the Mast Cells get activated for virus. Often when the virus is gone, the Mast Cells reset. They go back to baseline. But in situations where a patient doesn’t have normal Mast Cells, they’re mutated, let’s say those Mast Cells never actually return to normal. They return to their reactive state. I should mention one of the things that I often forget to talk about when I talk about MCAS is allergy. Because Mast Cells really are the cell that’s involved in allergic reactions. And the reason I don’t often mention it is because it almost seems obvious, but I wanna make sure that our listeners know that there are people who have abnormal Mast Cells when it comes to allergy, there’s a specific reaction to pollen, food, et cetera. But allergies on their own are not Mast Cell Activation Syndrome. You need to have other symptoms besides allergy. But the important point is that Mast Cells are involved in the allergic reaction. They release histamine. And histamine is what causes those symptoms that people get with allergy. It’s interesting to me that there are many allergists out there who are treating allergy, but I don’t know if they recognize that the Mast Cell is actually at the root of it. Cuz if they really understood that, then they would understand how it could then lead to potentially other things. But that’s a whole other story too.

[00:12:38] Jill Brook: Right. That’s just why we need a lot of episodes to be able to go deep. Okay. So if I were gonna summarize, a Mast Cell is a cell that’s in all kinds of tissues of the body, especially where the body interfaces with the outside environment and it can hold a bunch of chemicals. When it gets exposed to a trigger, it can explode and release those chemicals, which can then cause an allergic or inflammatory type reaction. And all of this is normal and healthy and helps protect us, but when it gets to be too much, it can be Mast Cell Activation Syndrome is that correct?

[00:13:20] Dr. Tania Dempsey: If the Mast Cells themselves develop a pattern of reactivity that is beyond what we would call normal. So again, if you encounter a virus, I think about this a lot with COVID, especially post COVID patients. So if you have exposure to COVID, whether you have Mast Cell Activation Syndrome or not, your Mast Cells are gonna kick in and you’re gonna have some inflammatory reactions, some congestion, cough, fever, and some of that the Mast Cells are involved in. But if you started out with what we’ll call normal Mast Cells that were not mutated or abnormal in any way, theoretically they should reset and go back to normal following that infection, and then just wait for the next thing that they have to react to. But if the baseline is that these Mast Cells are already dysfunctional. They’re already a little bit too reactive. Then you get the infection, the whole host of symptoms happens like others, but after the infection is theoretically over, the Mast Cells are not resetting, and so they continue to react causing inflammation and persistence of symptoms. And so that may be a theory behind long haul COVID, is that maybe there was a predisposition to having abnormal Mast Cells that never reset after infection.

[00:14:48] Jill Brook: Right. Okay. So let’s talk about what those symptoms can look like in Mast Cell Activation Syndrome.

[00:14:55] Dr. Tania Dempsey: I have these slides that I use for various presentations. The number of symptoms, I don’t think I could even cover all of them. And I always learn of new ones, by the way with every patient that I see. But you imagine that if the Mast Cells are in all the tissue and organs and skin and nervous system, then the array of symptoms that you can get will span all those places. So, I think of like starting at the top. Headaches and migraines definitely can be associated. Anxiety. Depression, OCD, mood disorders, vision changes and double vision, ringing in the ears, swallowing issues or reflux, different GI issues, constipation and diarrhea, vomiting, nausea certainly can all be associated. Rashes and hives and various skin manifestations, possible eczema maybe related as well, and maybe psoriasis and things like that. And neuropathies and some other neurologic issues. Pain is a very, very important symptom and pain could really manifest anywhere depending on where those Mast Cells are particularly reactive and activated. So I’ve seen bone pain, muscle pain, joint pain musculoskeletal pain could be neck and back and things like that. Mast Cells are certainly in the connective tissue. So we sometimes will see issues with connective tissue problems like stretchiness or hypermobility. Maybe related to EDS. We, we often see autonomic dysfunction as a consequence of Mast Cell Activation Syndrome. So POTS can definitely be a symptom. So that would be abnormal heart rate with change of may affect blood pressure, may not affect blood pressure, but there’s a problem in that part of the nervous system that should be what we’ll call automatic but is not working properly. And so that can affect not only blood pressure, heart rate and things like that, but could also affect digestion. So we sometimes see gastroparesis or slowing of the digestion and other neurologic effects. Gynecologic issues, very, very common in women. Could be abnormal bleeding or, heavy bleeding. Can affect fertility. It could affect weight. So there are lots of things involved. Endometriosis, maybe a symptom of Mast Cell, or at least Mast Cells may be involved in part of that, if not the whole thing. And then in men inflammation of the prostate because of the prostate and the uterus actually in women they’re equivalent organs, basically, they come from the same embryological root. So if women can have inflammation in their uterus or problems in their uterus, well men can get them in their prostate. And so, certainly things like prostate issues and bladder issues, interstitial cystitis. I’m probably forgetting something, but there’s a lot obviously, and I’m sure it’s the type of thing that when people are listening they might say, well I never thought of that. I have headaches for years and I’ve been treated with migraines, but I also have joint pain. I never realized that they could be connected. And the point of this and teaching everybody is that there is this connection and sometimes fixing one part may actually help everything else.

[00:18:07] Jill Brook: Right, and I think that’s what’s so important about understanding Mast Cells for certain types of patients who just have so many different problems at once that people have a hard time even believing them, but they might all have this common root cause and we’ll get to it later, but you actually have solutions for this, and so you can actually help many symptoms at once sometimes by treating the Mast Cells right.

[00:18:36] Dr. Tania Dempsey: Correct. In medicine band-aids are important. we’ll go back to migraines for instance, and there are lots of migraine medications out there that neurologists will use or primary care doctors will use. And yeah, they certainly can be helpful. But they’re not getting to the root cause, right? They’re like dampening down maybe the reaction. Maybe they are alleviating pain, but they’re not fixing the problem. The problem is probably rooted at least partially, if not fully, in this function of the Mast Cell and Mast Cells in that nervous system and in the vasculature releasing these chemicals and then downstream causing headache, migraine, or whatever. What I have found is that by focusing on the root, so if the Mast Cells are the driver of that symptom and you focus on the root and sure, you might still need those migraine medications and there may be some utility to them. Maybe they’re also helping Mast Cells inadvertently, but getting to the Mast Cell at the root could help not just that symptom, but might even help how the Mast Cells in other parts of the body that are also being affected.

[00:19:44] Jill Brook: Well, and some of my most favorite things that I listen to you and some of the other Mast Cell experts talk about is when you say that you have a patient who, for example, maybe has had rashes and IBS and maybe even psychiatric symptoms for years and they were trying different bandaids that maybe worked a little or not, but at some point you’re able to figure out that it is Mast Cells at the root and sometimes some relatively simple, cheap, safe treatments can help all of those things and be life changing and it’s really amazing.

[00:20:20] Dr. Tania Dempsey: It is amazing. I tell you, every day I’m amazed at how this can come together for some patients, right, with sometimes simple treatment, of course there are patients who are severely debilitated by this Syndrome and obviously it takes a lot more to get control and there may be other things involved. But, but yes, it’s definitely worth looking at because sometimes it will be a simple solution and if it’s not a simple solution, we’ll find the solution and it might just take a little longer.

[00:20:49] Jill Brook: That’s just amazing. So back to another basic, you had mentioned some triggers that can set off Mast Cells and make them degranulate or explode and release all of their inflammatory chemical mediators. Can you talk more about some of the typical triggers that can do it?

[00:21:08] Dr. Tania Dempsey: So I think about things again, in the environment. So for some people, and I wanna be clear. Not everybody’s Mast Cells are the same. They may not react to the same things, but typical things that I see are chemicals, VOCs, things that they smell. It could be perfumes or fragrances. It could be cleaning products. and smoke is a huge one unfortunately. Anything you can breathe in from the environment obviously could be a trigger. For some people the trigger is food. there’s certain foods that their Mast Cells react to. Sometimes elimination diets work and sometimes you gotta get the Mast Cells under control. But food can certainly be a trigger. And there are lots of different foods. I’ve not really seen a real trend in one direction, but generally there are some foods that seem to be more problematic. So maybe foods that are higher in histamine maybe problematic for some people, for some people and maybe salicylates or oxalates. So I think about those things as potential triggers. Infections definitely are a huge trigger for Mast Cells because that’s really like their job evolutionarily really that’s what they’re made for. But beyond that, mold which is in the environment or fungal infections internally, mycotoxins and any kind of toxin really will set off Mast Cells. Stress is a big factor. I don’t wanna say that stress alone is going to be enough to get someone in a bad flare, but certainly stress is a huge factor, and usually in combination with something else is definitely a problem and has to be addressed. Not getting enough sleep. Very, very common trigger. patients often feel worse if they don’t, if they don’t sleep. Those are the big ones I think.

[00:22:51] Jill Brook: Yeah, well, I’ll throw in a couple more. I think insect stings or animal bites for some people. There’s a couple physical things that get me. One is vibration. Sometimes other people might react to a temperature change or extreme heat or cold.

[00:23:08] Dr. Tania Dempsey: And also pressure changes. The barometric pressure can be a big issue and trigger.

[00:23:13] Jill Brook: I have mechanical pressure, which is why I lay on my stomach while I do this, because my butt gets so much sitting during the day, that I try to take the pressure off when I can. One thing I know that you and Dr. Afrin also have spoken quite a bit about is sometimes excipients that can be in drugs or supplements.

[00:23:32] Dr. Tania Dempsey: Basically every drug on the market, every supplement on the market for the most part, has to have something mixed in it for various purposes. So, for things that are made into capsule formulations, the drug might be very small so to fill the capsule, they will use a filler of some kind to fluff it up, to make it fit into the capsule. Pharmaceutical companies often use dye of various kinds, like red dyes and blue dyes, yellows to make it pretty and maybe more exciting from a marketing perspective, but those dyes are problematic for a lot of people, not just those with MCAS, but certainly more problematic if you have MCAS. So most of my patients are very sensitive to dyes. And then from a pharmaceutical perspective, they also have a lot of other added ingredients. So, often there’s things like lactose, which is sugar from milk. And some patients are lactose intolerant or they have dairy allergy or dairy intolerance. And so that could be in a pill you might not even realize you’re taking it. Again, there’s a huge list of ingredients that pharmaceutical companies can use and that those ingredients can alone impact and cause a reaction from the Mast Cell. It doesn’t always have to be the drug. So some patients come to me with a long list of drugs that they’ve reacted to, but some of those might not be the drug, but maybe the delivery system. Even IV formulations of things. There are preservatives, there are lots of things that can be mixed in it that people can react to. And even in the supplement nutraceutical world. Even though some products are better and professionally formulated. They still sometimes use certain ingredients that some Mast Cell patients are sensitive to. So one of the things that I do for patients where we know that might be a trigger is we wind up compounding the drugs. We try to work through and figure out what the inciting issue excipient is and try to eliminate that and try to find different things to eliminate the reactivity. So that’s a huge trigger.

[00:25:38] Jill Brook: Yeah, so I kind of think this brings up the fact that any patients out there who have Mast Cell Activation Syndrome, or suspect they do, you are kind of deputized now as a part-time detective to pay attention and try to figure these things out, right? Because the number one thing that is gonna help is figuring out what are your personal triggers.

[00:25:57] Dr. Tania Dempsey: Step one to treating MCAS. And I would argue that to treating any I inflammatory issue that you have you’ve gotta eliminate what may be the trigger and figuring that out I’ve had patients produce spreadsheets of ingredients and different products and trying to figure out what the correlation is between them. Sometimes it’s easier to figure out. Sometimes it’s harder. And sometimes it’s not the excipient. I certainly have patients who don’t have any problems taking different kinds of medications, but they have other issues. They may be chemically intolerant, they may be reacting to something else. So trying to figure out what it is about you is really key.

[00:26:37] Jill Brook: Well, and I always have to laugh because what counts as a victory in the world of chronic illness can sometimes be a little bit depressing. But I always tell people in the nutrition world, you’re actually pretty lucky if you react quickly because then it makes it much easier to figure out what your trigger is, because we should probably mention that sometimes Mast Cells are not instant right?

[00:26:59] Dr. Tania Dempsey: Yeah, they definitely release mediators on a different timeline. So some mediators are nanoseconds they’re just so fast and that’s gonna be produce a certain reaction. But some of the mediators have to be actually produced and packaged some of them are already produced ahead of time, and so, yes, so a delayed reaction is not uncommon for some patients. They take something, they have a reaction three days later, they don’t know and two to three days later is not an uncommon timeframe. And then they’re looking at that day, what happened that day or the night before, but we have to even look further out to see what may be triggering. So yeah, it could be difficult, but yes, patients can have immediate reactions too. Right.

[00:27:43] Jill Brook: So that’s why a spreadsheet is not crazy because if you have to go and look and see what you were exposed to 72 hours ago, you’re gonna need that.

[00:27:51] Dr. Tania Dempsey: Oh no, absolutely. The other triggers that I would mention I think are really important are things like implants or foreign objects. I think it’s important because this is a big point in the breast implant world where we’re seeing a lot of breast implant illness. We certainly see issues with dental implants or joint replacements or mesh from a hernia repair. These are foreign objects. They may be made with what we’ll call inert metals or inert ingredients. At least that’s what the surgeons believe, and that’s what the manufacturers believe. But nothing’s really inert because it’s impossible. It’s just not our body. It is another substance. And so, we see that as being a big trigger for patients where it could be that they were relatively fine. And relatively healthy. And then they have a simple surgery. Maybe it’s an implant surgery. Maybe it’s a hernia surgery. Maybe it’s a gallbladder surgery. And by the way, what I learned recently was that the way they do gallbladder surgery now is when they take the gallbladder out, they’re using metal clips to tie off the area connected to the liver and to the other part of the GI tract. And they used to just like suture it up and like the sutures would dissolve, but now they use these metal clips. And so I have a few patients where I wonder whether that was their trigger. So all of a sudden they’re fine and then after the surgery, maybe it’s the stress of the surgery, maybe it’s the implant or the metal or whatever in their body. Then all of a sudden it just sets off this vicious cycle and then they become reactive to other things. The triggers expand. You have to eliminate the original trigger.

[00:29:36] Jill Brook: Right, and you cannot blame the Mast Cells for being smart and recognizing that there is some foreign thing inside the body.

[00:29:42] Dr. Tania Dempsey: That’s what they’re here for. They really are trying to protect us, but yeah, that’s where it definitely backfires.

[00:29:48] Jill Brook: So I know that in our future episodes we’re gonna be talking about the role of Mast Cells in many different areas, many different medical specialties, but just as like a little taste. Do you mind talking about the hypotheses about why Mast Cell Activation Syndrome could cause POTS.

[00:30:09] Dr. Tania Dempsey: Yeah. Well as I said, Mast Cells are in the nervous system. Imagine a nerve, let’s say is like an electrical wire. And the Mast Cells sit literally like around that wire, and they are there to protect the nervous system and the nerves. And so, you can imagine as they’re sitting there if they are dysfunctional, if they’re reacting to something, they’re going to degranulate release some of their chemicals. Some of those chemicals will send a signal to the nerves. The nerves will then release their neurotransmitters, which will then also talk to the Mast Cells. And so this sets up an inflammatory cycle and I’m really making it simple cuz it’s probably much more complex than this. Right. But, I think of it this way that if there’s inflammation in the nervous system, and in particular if it involves the autonomic nervous system, and again, that’s the system that is supposed to be automatic. The heart beats, you don’t think about it. You breathe, you don’t think about it. You digest food, you don’t think about it. And that part of the nervous system, if it gets inflamed by Mast Cells it will set off a reaction, right? And so we’ll call it a dysautonomia. It’s the autonomic nervous system becomes dysfunctional because now there’s inflammation and an abnormal signaling pattern. And so I think that’s the root. I think that’s the connection of why then people develop POTS. Whether they develop gastroparesis or other forms of dysautonomia, right? Those are two of the common ones, but the connection is the Mast Cells producing inflammation in the autonomic nervous system. And then now the signals are crossed. And so now standing up is going to send an abnormal signal and now it’s reacting abnormally. So now the signal is the heart has to speed up cuz it doesn’t have enough blood flow. Right.

[00:32:01] Jill Brook: Yeah, I’m so excited to go deep on all of the different problems that Mast Cells can cause. So how common is Mast Cell Activation Syndrome thought to be? And do we know, is there a typical demographic that it hits?

[00:32:16] Dr. Tania Dempsey: So there’s some research out of Germany that suggests about 17% of the population has MCAS. Now there’s some similarities to the population in Germany to our population in the United States. So maybe we can extrapolate and say that it’s gonna be the same here. But if we think about it, if we round down to 15% it’s still a large number. If we round up to 20%, it’s an even larger number that’s potentially one in five people, one in six people that are affected have dysfunctional Mast Cells. I think it is going to increase in numbers and there are a lot of reasons for that, which we will spend time talking about. But right now it’s a pretty large number. But there’s a huge spectrum of manifestations. So there are lots of people walking around on this earth who probably have MCAS, but it doesn’t affect them on a, in a way that is really disruptive to their life. maybe they have allergic like symptoms maybe they saw an allergist, they were told they’re not allergic to anything, but they know they have these allergic symptoms. But maybe they pop a Claritin or Zyrtec or something and they go on with their life. Maybe they also have reflux and they see the GI doctor and they put them on some H 2 blockers or PPIs. So I feel like there’s a lot of people out there who have these very non-specific symptoms or non-severe symptoms that they’ve learned to deal with. And then at the other end of the spectrum are people who are really severely affected. So you can imagine that that’s a wide range, of what you can see in that, let’s say 20%. But demographically, I mean, certainly women probably are more affected by it than men, although I absolutely have many male patients. So it’s maybe slightly disproportionate to women, but still men can get it as well. And I would say that it’s not uncommon to see this appear during certain parts of a patient’s life cycle. So when there are hormonal shifts in particular, so puberty in both boys and girls is a very common time for Mast Cell Activation. And we can go through the reasoning behind that. Certainly in women around the childbearing ages or pregnancy. Menopause. Another important time when they may be more likely to be reactive symptomatic.

[00:34:36] Jill Brook: Great. So I guess one last question. The nature of Mast Cell Activation Syndrome, is it correct that in some people that it unfortunately, if not controlled or treated, tends to escalate over time? Can you talk about what MCAS might do over time?

[00:34:58] Dr. Tania Dempsey: I’m an optimist, so I have a slightly different, like, take on this. Theoretically over time, Mast Cells can get worse. Let’s just look at women that when they have these particular episodes in their life where there are hormonal shifts that escalates Mast Cell Activation, it might set them up at a higher baseline of function. So maybe they, with each trigger, whether it’s hormonal or other things that we talked about. Maybe every time these Mast Cells get activated, they establish a new baseline of where they come down to. Maybe they never come back down to zero. So over time it can theoretically escalate. And so it’s not uncommon for us to see patients who had some symptoms when they were younger, maybe went through periods of time when they’re were a little better. But then over time their episodes seem to get longer and more severe as they get older. Right. So that’s. To me is theoretical and does make sense on a scientific level, but I’d like to be positive about it and say that I can tell you from anecdotal experience that there are a lot of patients who have had episodes in their life that are consistent with MCAS, but they don’t necessarily escalate over time. They may have severe episodes periodically. But they seem to go back to baseline. And the reason I think that is and I think maybe my patient population may be slightly different, let’s say, than Dr. Afrin, cuz all of us are going to attract slightly different patients and have a slightly different approach. So I’m also diagnosing, let’s say whether they have MCAS or not. I’m treating their MCAS. I’m working on eliminating triggers with them, but I’m also looking at the body as a whole, right? And that’s that holistic approach. So, maybe they’re vitamin D deficient, maybe they’re B12 deficient, maybe they have some other issue. Maybe they have mitochondrial dysfunction, maybe they have a chronic infection. And so the point being that I feel while MCAS is certainly a root, there’s no question about it. There could be other roots that are right next to it, underneath it or above it. And so those other roots have to be addressed as well, and I can see from my experience with patients that when I address all those things, maybe we’re preventing the escalation with time and so I think that’s the positive spin that it doesn’t have to be that way, but it is a lot of work to unpeel the onion to get everything back in balance.

[00:37:37] Jill Brook: Well, I love it, and that’s why I’m so excited that we have you here with us because you have gone to the ends of the earth to look for every little nugget that can make a difference. And some of them are big, and I think some of them are small, but you are so full of practical ways to make this better. So tell us what are some topics that are on the docket?

[00:38:00] Dr. Tania Dempsey: Well, we’re definitely gonna have an episode on POTS and Dysautonomia, right? There’s no question that we have to do that. Right? And I think that that’s a topic that just keeps growing and our understanding keeps changing on some levels. So there’s always stuff to talk about. We’re definitely going to look at the GI system and look at the manifestations in the GI system. I hope we’ll also cover SIBO and some other things that can happen in the GI tract that can set the Mast Cells off and be involved in that. We definitely will have to focus on the nervous system and neuropsychiatric manifestations. I think that’s such an important, really underdiagnosed and not well understood process that so many patients deal with. And there are lots of solutions. Lots of solutions that traditional doctors who are not thinking about this, they’re not looking at or doing, so we’ll definitely have a psychiatrist talk about that. I think the other neurologic stuff, we’ll have a neurologist talk about small fiber neuropathy. And some of the other neurologic neuropathies that we see with MCAS. I’d love to have a gynecologist or a women’s health expert on to talk about the the relevant gynecologic manifestations of MCAS. There’s gonna be lots of stuff. I hope I’m not missing anything.

[00:39:12] Jill Brook: I’m sure we’re missing a lot. There’s so much. And I know that you, with your colleagues have constant conversations going on about new ways to help, new findings, what the research is saying, alternative therapies that may be of benefit.

[00:39:28] Dr. Tania Dempsey: Yeah. We have an amazing group of practitioners of various specialties. And there’s always something new that someone is looking at or looking at it a certain way that then helps us. So we share information, we collaborate, and I hope to get a lot of these people on here to provide their perspective. So it’s gonna be really, really exciting. I mean, this is stuff that I get excited about because I have access to this information, but I want everyone out there to have the same access to these people and to this information. It’s gonna be amazing.

[00:39:59] Jill Brook: Yes, and I’m always reminded about how the latest research is years ahead of the normal average clinical practice. And so getting this information out to people now I feel like is gonna save people a lot of years waiting around for these answers to kind of get out by the normal means. So our next episode is gonna cover the basics of diagnosing and treating MCAS. And I guess my final thought is just for people to have optimism as you said, because you do have so many ways to improve life for people with Mast Cell Activation Syndrome. So, I’m almost sad we have to wait till the next episode.

[00:40:38] Dr. Tania Dempsey: There is so much hope, Jill. I’m with you. And I think that that’s why programs like this, getting the word out there’s so many other practitioners now who are working to get the word out in various summits and conferences and I think the more educated patients are the better our medical system is going to be. , I’m encouraged by that. Unfortunately, it’s gonna take the patients to fight for their rights and their acknowledgement.

[00:41:04] Jill Brook: Excellent. Dr. Dempsey thank you so much for this information. We are so excited to learn more from you and we are very, very grateful that you are making time to do this for all of us.

[00:41:15] Dr. Tania Dempsey: Thank you. It’s my pleasure.

[00:41:16] Jill Brook: Hey listeners, that’s all for today, but we’ll be back again next week with a normal episode of the POTScast, and we’ll be back next month for another episode of Mast Cell Matters. Until then, thank you for listening, may your Mast Cells be good to you and please join us again soon.