Dr. Dempsey answers MORE listener questions as part of MCAS Matters with Dr. Tania Dempsey

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Jill Brook: Hello, Mast Cell Patients and lovely people who care about Mast Cell Patients. I'm Jill Brook, and this is Mast Cell Matters, where we go deep on all things related to Mast Cell Activation Syndrome, or MCAS, with the help of our wonderful guest host, Dr. Tania Dempsey, world renowned Mast Cell expert, Cornell and Johns Hopkins trained physician, teacher to the other MCAS experts, and researcher extraordinaire.

Today, she is going to be our guest to answer more listener questions, because after our last episode, we got many, many more fabulous questions. So thanks to everybody who sent those. And Dr. Dempsey, thank you so much for being our guest today.

Dr. Tania Dempsey: Oh, well, I love being here. I'm so excited. I love doing the Q& As.

Jill Brook: You are so amazing at doing them rapid fire, and we think the world of you. So I tried to group them by categories. And so [00:01:00] our first category is about anaphylaxis. And so the first question that just came in was, what exactly is that, and sometimes people talk about an anaphylactic reaction, and some people talk about an anaphylactoid reaction.

And so are those the same thing? Is it different? Or anything else you want to say about anaphylaxis?

Dr. Tania Dempsey: A very, very important question because there is definitely a significant subset of mast cell activation syndrome patients who experience reactions that are potentially life threatening. And so that would be, so let's, let's talk about anaphylaxis. Anaphylaxis is really where that is, that is a life threatening reaction where the throat is closing, the airways are closing, and the person cannot, you know, could lose ability to breathe.

And the anaphylactic reaction needs to [00:02:00] be addressed immediately. And epinephrine or an EpiPen is often what is used to get out of an anaphylactic reaction. Okay. Obviously life-threatening, dangerous. So there's a, there's a small subset of patients who are in that anaphylactic category. I think about anaphylactoid as, as resembling anaphylaxis, but not achieving that the full blown sort of closing of the airways, right? So an anaphylactoid reaction to me is, and maybe others think of it differently, but I think of it as someone who starts to feel their throat closing but they may take some Benadryl they may, and maybe they don't even take anything, the reaction sort of is able to sort of subside either on its own or with something, so it never gets to that life threatening place, but it is very scary until the person experience it, [00:03:00] experiencing it,

it feels like anaphylaxis, but it's, I think of it as a step before that. And so there are lots more patients who have anaphylactoid reactions than true anaphylaxis. Again, anaphylaxis is like they need epinephrine, sometimes they need multiple, sometimes they, you know, obviously they have to go to the hospital and and it can be deadly and we want to prevent that.

Anaphylactoid is resembling it, has some features of it, could potentially go down that path to anaphylaxis, but often doesn't, often stops way before that. Either because of the things that people are doing or just because that reaction is never going to get to a life threatening place. I hope that's clear.

This is a, this is a very confusing area. I get questions about this all the time and I think, I think really, you know, I can, I can generalize here and kind of talk about these different things, but really on a [00:04:00] personal level it really is important that any individual who has these symptoms that they're concerned about and they think they're not sure if it's anaphylactic or anaphylactoid, regardless of which one it is, it doesn't matter.

It's still very, very important that they discuss it with their medical provider and come up with a plan of action for what to do with those reactions. Especially since, you know, they can be, they can be dangerous. And, and I want to be clear, I'm not saying that anaphylactoid reactions are not, you know, are not potentially dangerous or deadly, but they, but they often are not going to the full extent.

Okay, so anyway, I think people need to discuss this and understand with their providers, hopefully who understand MCAS, what type of reaction they're really having, and then again, the plan for what happens when the reaction starts. What should you be doing?

Jill Brook: Yeah, so, okay, so that [00:05:00] leads into the next question that people have, which is, do you have any tips about knowing when to use the EpiPen or not? And the thing that I would say is, that we keep hearing is that a lot of the literature about EpiPens always says, use it early, use it often.

And people are saying, if I did that every time my eye puffed up, I'd be, you know, doing it way more often than I really need to. And I know my body. And so if I know that I get some swelling on the eye, for example, but it does not lead to a throat closing, Do I still need to follow the directions and do it?

And just any kind of, I don't know, general advice around making that decision?

Dr. Tania Dempsey: And again, I think we have to be very general here, as I said with the previous question. Everyone is different, and I want to be very clear, right? I'm not giving advice here. This is not you know gonna apply to everybody, right? And so it is important that people know their body and that [00:06:00] they talk to their medical practitioners about these questions, you know, what to do, you know, what applies to them.

I think that if the patients know that it's not likely to progress and they feel comfortable waiting it out, it might be okay, right? Now, sure, as a, as a, as a doctor, if somebody's telling me they're having a reaction, I'm going to react quickly, right, because I want to make sure that this is not a life threatening reaction.

But, but, patients know their body better than anybody else, and they're going to know it better than I will. And so if they feel confident about understanding what is going on? And they can monitor and figure it out and know when to, when to do the Epi and not, and I, I think that's fair. Again, as long as they've had a conversation with their medical practitioner and the medical practitioner understands that that's how they're going about this.

Now, there are a lot of issues with doing Epi often. Number [00:07:00] one, it's hard to get enough Epi pens for some patients. Your insurance often doesn't cover enough EpiPens for some patients. You know, if a patient uses an EpiPen once or twice a year, that's one thing, or less than that, right? It's fine. But patients who need it weekly, or more than weekly, that's problematic, right?

So, if, if they don't really need it and they can manage it. They have other tools and acute treatments that they can use outside of Epi. That's fair. You know, if they know they can take an extra dose of Benadryl maybe they take Benadryl and Pepcid, and maybe they take some of their other mast cell stabilizing drugs, and they know they can keep the reaction under control, absolutely.

If the throat is closing, there, there's no debate. You cannot fool around, right? I think that you get to the point where you feel, you know, the, the airway may be compromised. You have to do the Epi. Now, the other downside of Epi, outside of cost, and [00:08:00] insurance, and things like that, is the fact that it does speed, the heart rate.

It does increase heart rate. That's what Epi does. And so we're, we're taught, at least in medical training, that if somebody gets Epi they need to go to the hospital, right? And and if EMS is called and a patient receives Epi they're going to tell them they have to go to the hospital because they need monitoring. What I have found is that I have patients who do Epi enough that they actually don't feel the need to go to the hospital because they, they feel like they can sort of control, monitor, they, they kind of know what to expect. And that's, at the end of the day, the patient's prerogative but if patients are doing Epi often, I do think that it may be safer to go to the hospital just to make sure that, that everything is fine, that the heart is fine, especially if you needed, you know, double dosages, you know, like two EpiPens in a row or [00:09:00] something like that.

Okay, but I, I do, I do know that on a, on a individual level, there are patients who are, are concerned about going to the emergency room or to the hospital. They're concerned that the providers there will not understand. What they're using Epi for, what their condition is, they're worried about how they're going to be treated.

And that's, you know, that's justified, to be honest. I think that, again, I always think back of, like, you need a plan. You need a plan of action. You need to talk with your providers about this. So that if you do go to the emergency room that you have maybe a outline, a paper, like we give our patients a an outline that's, that's general, but, but I do edit it to the individual patient.

That tells the hospital, if you wind up in the hospital, what things they could use if you're still reacting, if you're having a problem, you know, it's sort of like, like a preemptive plan. [00:10:00] So, I think, I think these are just things, so I know the question was simply just about the Epi, but, but it brings up all these other, other things that people need to consider.

At the end of the day I think that if you're, you don't know what to do, you okay, let's say you're on the fence. Let's say it's not clear. Sometimes the reaction is clear, you feel like, I'll take Benadryl, I'll be okay. Or vice versa, the reaction is coming on so quick, and the throat is closing, and you're going to make a second decision to do the Epi.

But sometimes the reactions are in the middle, in the gray zone. It's not clear I've, I've had patients who feel the throat closing but it's very slow and they're not, they can almost feel like maybe they're going to be okay if they just take some more of their mast cell targeted therapies and and they wait a little and then they, and then they have to make a decision if it starts to move again, right?

So it's not, it's not [00:11:00] always so straightforward. And I, you know, I wish it is. From a allergist perspective, I know a lot of allergists will say, like you said, just do the Epi, you know, not think about it. But, but some patients don't like how they feel with Epi. There are other implications of taking the Epi, right?

On the other hand, I have patients who feel great with Epi. Epi actually is amazing for them and and that's a whole other, that's a whole other conversation. So, yeah, so it's a really great question. I hope that, I hope that was helpful going though it.

Jill Brook: Yeah, no, that's so helpful. Recognizing the gray spots, cause yeah, I think a lot of us are in those positions where we're like, oh no, I don't want to turn this into a whole day thing. Maybe it'll just pass. But the label technically says that if my eye is puffy, I'm supposed to do it. And yeah, and I think for a lot of us, we're not sure what to expect after we Epi ourselves, right?

So that was a question that came in from a couple different angles, which was [00:12:00] yeah, what do I expect to have happen? Nobody ever tells us.

Dr. Tania Dempsey: Yeah. No, right. Actually, that's a, that's a great question. So, for some people, it's almost an instantaneous reversal of the symptom. So, the throat is closing, you do the Epi, the throat all of a sudden opens. And it can be instantaneous. And some patients their throat will open, and then all of a sudden it will close again and they're going to need another Epi.

You know, that's a really bad situation, and that's a patient that needs to go to the hospital. I mean, that's, that's too dangerous to deal with. For some patients, they have really, they don't really notice much from the Epi, but other patients will have tachycardia. Their blood pressure might go up. They might have, you know, sort of a you know, sort of an uneasy feeling, but Epi is very short lived, it's out of the system pretty quickly, so usually the symptoms don't last that long.

It's very, [00:13:00] very transient, in and out very quickly,

Jill Brook: Great info. Fabulous. We had one person write in and say that when she gets lidocaine with epinephrine in it, like even just to get like stitches in her finger, it makes her hyper POTS go nuts. Like her heart rate went up to 180 just from lidocaine with epinephrine. So she was afraid that if she Epied herself with a full Epi amount

that her heart would really go crazy. But in general, are there any, are there any warnings for hyper POTSies or people with POTS that they have bad experiences or anything or it tends to be okay?

Dr. Tania Dempsey: It's very, it's very, very variable. And I, so I've seen patients, they're actually, their hyper POTS gets better. I, I have a couple of patients where have, have like a, I, I call it a paradoxical reaction. It's almost like whatever should make it [00:14:00] worse, actually made it better, which doesn't, doesn't really always make sense.

But yes, I have seen that, I've seen Epi potentially make it worse and bring, drive the heart rate up. The difference though, for that patient, let's say who's talking about the lidocaine with the Epi, you can't really translate that reaction to the reaction that you would potentially get from, from the way you're going to take Epi for a reaction.

So like lidocaine with Epi, you mean like for like a dental procedure or like an injection of some kind? The lidocaine itself could be causing a mast cell reaction, causing worsening hyper POTS, hypoallergenic POTS, may not actually be the Epi, or it could be the excipients that those, those things are in, which may have nothing to do with the actual effects of the Epi.

So, it's hard to, I understand the apprehension, for [00:15:00] sure, but I think that it could be, it could be a different reaction. So, yeah, so I wouldn't, I would say that, you know, if you need it, you need it. And if you're, if you feel like your hyper POTS is worse and you took Epi, you go to the hospital.

Again, not ideal, but, you you know, you go because you need to be monitored.

Jill Brook: Okay. Fabulous info. Okay. One more question about anaphylaxis and this one is, if I have never had anaphylaxis before, is it likely I never will get it, even if my MCAS is getting worse in other ways? I still worry about it if my MCAS is escalating?

Dr. Tania Dempsey: You know, that's a, that's a really, really good question because yeah, that has come up quite a bit and my patients have certainly asked that of me. I've been asked in other social media platforms about that because the answer, it depends [00:16:00] actually. I would say that the vast majority of patients that I see who do not have anaphylaxis or anaphylactoid reactions generally don't develop anaphylactoid, anaphylactic reactions like out of the blue after years of having MCAS.

It's, it's rare on occasion, if the MCAS is escalating, sure, it could happen, and I have seen it happen. But there's no way to predict who is the person who's going to go on and their MCAS is going to worsen in that direction. Or it's going to worsen, but it's going to worsen in other, other systems of the body and not there.

So, yeah, I wish I could give a more definitive answer. The reality is, it's probably, probably unlikely that it's going to go in that direction, but you know, you don't, we don't know. [00:17:00] We don't know because these mast cells are kind of fickle, unfortunately, and they really can do anything, anytime, anywhere.

But, I kind of think of like past performance kind of predicts future performance and so if in the past they didn't perform, you know, that way they're probably not going to in the future. But I say probably 'cause it doesn't mean it's not, nothing's a hundred percent.

Jill Brook: Okay, fantastic. Okay, so moving on to some one off questions. Here's one from a woman named Julie. She says, both my daughter and I, both with MCAS, have had the horrible experience many times where we were having our blood drawn, the tech gets some blood in the needle, but then the blood disappears. And then they have to re poke and re poke and re poke, sometimes giving up without being able to get blood.

Is that related to Kounis [00:18:00] Syndrome? Do the veins spasm from mast cell activity and cut off the blood flow?

Dr. Tania Dempsey: Wow. What a great, very insightful question. Amazing question, actually. So, it's not Kounis Syndrome, because Kounis Syndrome really is involving arteries. However, I do think it is a similar mechanism, and I think, I think she nailed it. It is that the veins, the mast cells in the lining of the vein, because mast cells line all the vasculature, arteries and all that, and they, when they, you know, sort of, that poke,

and then, so there's a poke into the vein, then there's a vacuum that's starting to pull the blood out. That vacuum is that sort of what's the word? It's not trauma, but it's like an insult to the mast [00:19:00] cells that are lining that vein as the blood is moving past it in a very rapid manner, they're getting a signal, danger and then they release their mediators, and again, within milliseconds, and then the vein is just going to collapse and, and, and tamp down.

So yeah, I think that is the mechanism. Absolutely.

Jill Brook: Oh, that's so interesting. Man, find so many ways to get us.

Dr. Tania Dempsey: I was just gonna bring something up that like, that I get asked often about blood drawing. If we're talking about blood draws, I'd love to just address this other question. I have patients who have, their trigger is the blood draw. So, you know, mast cell patients are, you know, we really teach them to to identify the triggers that set them off.

And for some patients, that act of the blood being pulled out of the veins causes a severe mast cell flare for them. And so for some patients, for [00:20:00] days, they feel very unwell and they sometimes don't understand, you know, what is it about? So they'll say, you know, you can't take too much blood. Sometimes they know how many tubes you can take before it, like, will trigger them.

And I think it's along the same, the same sort of mechanism, except the mast cells and the lining of the vein are getting irritated.

Jill Brook: That's so interesting. And just a couple of days ago, I had an infusion where that happened. The blood appeared and then it disappeared and they lost the vein. But since I was getting an infusion and not having blood drawn, it turned out not to be a problem. She was able to keep, you know, pushing in liquid and then keep it open.

Luckily maybe it's only one, a problem in one direction.

Dr. Tania Dempsey: Sometimes, but not, but sometimes it's not. Right, so generally it's worse if you're trying to pull it out. For some patients, getting fluid in through the veins, like, like a, like an IV like you got is helpful. You know, it can help POTS, obviously. It's sort of like increasing [00:21:00] that intravascular fluid level.

But but it can, for some patients, let's say the fluid is too cold or it's going in too fast, it can set off the mast cells and so some patients don't understand why they have a negative reaction to IVs, whereas some patients, you know, the IVs are saving their life and I think it's, because of this sort of similar issue.

Jill Brook: That's so interesting. So if you were going to give somebody some advice on getting IVs, you'd have to start thinking about things like the temperature of what is getting infused.

Dr. Tania Dempsey: Yeah, like warming up the bag, warming up the veins, you know, we'll use very gentle heat to help the veins sort of all plump up a little bit, but also I think for, for some people that sort of relaxes things. For some, heat is bad, right? So like, for mast cells, heat is bad, cold is bad, maybe, maybe, maybe for [00:22:00] some people it's the opposite.

But, but we have different tricks, depending on the patient, that we've learned that might help. So some patients, warming up their veins, pumping it up, and then the fluid going in a little warmer. At room temperature, but not cooler, kind of a, you'll, you'll avoid a reaction for some, for some patients. There are other things that that you can do, or that, you know, you won't be able to do because their mast cells are just, there's such a flare that even that is gonna set them off. But anyway, we try a lot of things to try to make it work.

Jill Brook: Yeah, that sounds so nice that you take care of each person individually like that. I think there's a lot of people right now

thinking about their infusion experiences and how it's not like that. Okay, question number two from Julie is about hypermobility and connective tissue. Is it reasonable to think that if the mast cell mediators break down [00:23:00] connective tissue, Would connective tissue heal and strengthen once you are treating MCAS?

I have sprained my ankles many times and now that I know I have MCAS, I'm wondering if that will stop since I'm taking MCAS medicines.

Dr. Tania Dempsey: Yeah, well, that's actually a really, really, I think this is a really important question, and this comes up quite a bit. So, I think it's possible that well, maybe even more than possible. I mean, I think that mast cell targeted therapy, that achieves control over the MCAS um, can lead to a lot of improvements in a person's health.

Overall, you reduce inflammation, right? Reducing inflammation leads to healing. If you reduce the constant assault on the connective tissue, sure, now the connective tissue can [00:24:00] heal but whether it will change and strengthen completely, I don't know if we know that. I think it really depends on what the state of their connective tissue is in.

So if it's a mild hypermobility and their mast cells, let's say they're in a flare and their hypermobility is getting a little worse and they treat their MCAS, very often you can kind of see that they're like, once you get things under control, their hypermobility can return to sort of their baseline, right?

It's never going to go back to 100 percent normal, but they, they kind of do get better. But for other patients, if the MCAS is uncontrolled for long periods of time and there's a lot of damage that's done within the connective tissue it's, it's not clear to me what, how much can be reversed and healed completely, right?

That would be our goal. I, you know, [00:25:00] I'm an optimist. I always like to think that we can do a lot, but I think that especially in people who have more severe they may, you know, controlling the MCAS, I think, can have an effect and should be focused on, but I don't know if it can be healed completely.

It really depends on the structure that it started in, you know. But like, if it's an ankle thing, and like ankle sprains, maybe, yeah, maybe controlling the MCAS will be enough.

Jill Brook: So that's related to another question that we got where someone was wondering if their full body itching means that their MCAS is kind of out of control and now they have mediators traveling in their bloodstream all over, maybe doing some nasty things.

Dr. Tania Dempsey: Oh, yeah, so this is a, this is a really interesting question, and I want to answer it want to answer it in a couple different ways, actually. So, just on a basic level, we have lots of mast cells in our [00:26:00] skin, everywhere in our skin, and when mast cells get activated, let's say in one part of the body, let's say in one part of, let's say, let's say your mast cells are activated in your arms. Mast cells can communicate to each other. So if there's inflammation happening in one part of the body, it can send a signal to another part of the body. So that maybe that leads to, you know, itching in the legs. Maybe it leads to anxiety. Maybe it leads to other symptoms because there is this crosstalk that is happening

between mast cells and between mast cells and other cells. So that one way to look at it is really just that this could be a communication issue. The other thing though, I will say is you always have to look at root causes. So if you have a symptom that's driven by what you believe is MCAS and the symptom is unrelenting. It is, it [00:27:00] is, you know, you're taking antihistamines, you're taking Leukotriene drugs you're taking you know, you're, you're targeting in all different ways, right?

Benzos, however you want to look, there's like, again, right, we have probably, you know, a good 50 different drug options and, and nutraceutical options, but you're, so you're trying a lot of things and the itching doesn't stop. You have to look and say what could be driving the mast cells to continue to react this way.

What is the trigger? So you have to look at the environment. The number one cause of itching caused by the environment is mold. So if you're living in mold, and you're being exposed to the, the toxins, they can, that, the skin is actually like the prime spot to react. So it's not an uncommon thing. So you have to look at your environment, make sure you don't have mold, think about other chemicals in the [00:28:00] environment. The other thing is that I think about the skin as a parallel organ to the gut. So if there's, the skin is itching, then I have to think about the, the gut and what's happening in the gut. Is there an imbalance? Is there we call it a dysbiosis. Is there abnormal amounts of bacteria, fungi like yeast parasites?

What else is going on in the gut that could be causing Inflammation that then is sending the signal to the mast cells there and then the mast cells in the skin. So my number two thing that I look at when I, when I see itching, so number one is mold, number two is parasites. And I'm just, this is just anecdotal, this is just what I see.

And then number three is other types of infections. So, they could be vector borne Infections, Lyme, Babesia, Bartonella they could be other viruses, I've seen, like, weird things cause [00:29:00] itching. At the end of the day, it could really just be your mast cells and, you know, and you just have to find, you just haven't found the right targeted therapy.

But, you know, with that kind of extensive history, I, you know, not knowing anything else, but that extensive symptom, I would say just make sure, I like to remind people to continue to look for their triggers.

Jill Brook: Great. Okay. Well, that kind of makes me think of this other question we have here which was Dr. Neil Nathan mentioned ice pick pains and inner vibration feelings being associated with mold. And, I guess the person's question is really just, really?

Dr. Tania Dempsey: I think I understand the, the question. Because It's sort of like, really, is mold, is mold doing that? And this is, this is how I, this is how I think about it. I don't think it's mold doing that. [00:30:00] And when I think about, when I said before, you know, this could be parasites causing the itching or the infections causing itching, the same, the same things I'm talking about can apply to this. I think that the symptom is driven by the mast cell, so the mast cell is causing that pain or that sensation, but something is causing the mast cell to react that way. And so there are some things that we've been able to associate with these triggers. Now, why that is? So, for instance, I have patients who have, I'm gonna, I'm gonna try to pick a, pick a symptom so I can yeah, well, let's just say sensitivity to EMFs, okay?

I have, I have patients who are really, really sensitive, and I do think that is a mast cell trigger. I mean, I think, not, not a mast cell trigger, it's a mast cell symptom. The mast cells are [00:31:00] releasing various mediators, cytokines, chemokines, lots of things. And they're sending a signal to the nervous system and mast cells are in lining all the neurons in the, in the body.

They're in the brain and they're talking to all the other cells there. And so they can send the signal and cause the nervous system to get more sensitized to it. So maybe you're irritable. Maybe you notice that the EMFs cause more sensitivity to noise or sensitivity to sound, or there are lots of different symptoms that can come out of this sort of EMF sensitivity.

So the mast cell is causing the symptom. But, generally speaking, I've never seen EMF sensitivity in someone whose trigger was I'm gonna, I'm gonna give an example. Maybe, maybe they ate, let's just, let's use this example. They eat something that they react to, okay? Let's say they have a food they react to.

I've never seen [00:32:00] that cause, like, all of a sudden EMF sensitivity. But I have seen mold and mold exposure cause the mast cells to react that way. And I've also seen I don't think mold is the only thing that does that though. I think that there are other things like Bartonella. That's one of my favorite infections to talk about.

Not my favorite infection at all. I hate this infection, but I like to talk about it because I want to educate people about it. I do see that because of the way it invades the nervous system, the way it invades the body, the way it interacts with the mast cells, I think is also potentially causing some of these, these symptoms that you, that you described.

So that's what I, I hope that's clear and helpful. I don't think it's those things are causing it. I think mast cells are causing it. Something's causing the mast cell to react a certain way.

Jill Brook: So it all comes back to finding the trigger. That's so [00:33:00] interesting. Okay. This is awesome. Can we keep bombarding you with questions.

Dr. Tania Dempsey: Yeah, let's do it. Yeah.

Jill Brook: I have a whole category of questions that are basically variations on a theme, where the theme is if XYZ is a supposedly healthy thing to do, but it triggers a flare in me, is it still worth doing?

And so this came up with infrared sauna, getting mammograms, getting colonoscopies, eating certain vegetables, like all kinds of things, like how do you know when something that's supposedly healthy is no longer worth it for you personally because of the mast cell flare it's causing.

Dr. Tania Dempsey: Okay, but let's, but let's split that into two categories. Okay, because some of the things that were mentioned are not necessarily healthy for you, but they're, they're preventative. Right? They're [00:34:00] preventative procedures, which I would never look at as healthy. I just think, you know, you just have to do them.

But, but if we, if we look at it like infrared sauna, cold plunges, IVs, you know, whatever, right? All these things that people talk about, or maybe eating a certain food, or taking a certain supplement, and people are like talking about it, like, this is the best thing since sliced bread, and we got to do it.

And, but if you react, you know, you're going to react, or you've tried it, and you react to it, you know, yeah, that's just not the right thing. Now, could it be the right thing at another point in your life, though? Maybe. I have patients who, at one point in their life, were intolerant to infrared saunas, but then, after treating them and doing other things, they were like, now they're tolerant infrared saunas, and in fact, love them.

I have patients like that, and I, so things can change, okay? So, you know, there may be things that you, you know, don't try for a while, but maybe when you're in a different state, you think maybe you could try again. But, but generally, I wouldn't push anything if you [00:35:00] know that it's not good for you. Now, the other part of that question though is, is important because mammograms have been shown to be life saving.

Colonoscopies have been shown to be life saving. They're looking for cancer. Now, let's say you know that a mammogram is a trigger for you. There are a lot of reasons why it can be a trigger. It's very uncomfortable. It's a lot of squeezing. It you have to lean in a certain position. It may be hard to get in the right position.

In my opinion, it's still very archaic. I can't believe that we haven't found something better. I just had to put my two cents in there. I really can't, still can't believe we can't find something better than that, but it is sort of the best, but there are other screening modalities that are not perfect.

They may not have the same sensitivity of picking up cancers. You know, [00:36:00] maybe you can handle an ultrasound if you can't handle a mammogram. Maybe that's just temporary until you're more stable. The same thing with a colonoscopy. Maybe right now you're in a major flare and you're worried about the prep for it and the cleansing and then the actual procedure.

But it doesn't mean you shouldn't, you shouldn't do it. There may be utility to doing it. Maybe you need biopsy samples to make a diagnosis for Mast Cell Activation Syndrome. Maybe you need to make sure you don't have cancer or polyps or something else or, or even inflammatory bowel disease that may be actually part of your illness.

So there are lots of important reasons why you might need these things. But, you know, if there, if you have a choice and there's some, there's some room for timing, and you don't have to. They're not urgent. Yeah, you get to a better state, and then you do what you need to do to make sure that you've done the preventive stuff.

And that, you [00:37:00] know, we're making sure that you don't, you know, wind up with an aggressive breast cancer because we didn't, you know, we didn't do a mammogram. So, so again, I look at it two ways, right? So there's some things that you don't have to do. So if you don't have to do them, don't, you know, like sauna but there's some things that you really should do.

And and getting yourself into a place where you can do those things, right, I think is probably the best bet.

Jill Brook: Okay, fantastic. So speaking of GI disorders, this one is a little bit nichey and I don't expect you to necessarily know the answer, but Heidi has a tough one for you. Do you know anything about Mastocytic enterocolitis, a type of diarrhea related to too many mast cells. Is it typically indicative of a systemic mast cell disorder such as MCAS, or do you think of it [00:38:00] as its own separate disorder?

Dr. Tania Dempsey: So, yeah, so I want to be honest. I'm not a gastroenterologist, and I think I've probably maybe had one patient with this condition. It is relatively rare. My, the way I see it, though, is that I would call it a mast cell disorder because they do find Increased number of mast cells in the intestine that's driving this this diarrhea and, and so an increased number of mast cells to me indicates a condition that that where there's an you know, a slightly increased number of mast cells that are more reactive and so, would fall in my category of Mast Cell Activation Syndrome, not systemic mastocytosis.

My understanding is that that is a separate entity. This is these mast cells that they find in mastocytic enterocolitis [00:39:00] are normal mast cells. They're just more of them. Whereas in systemic mastocytosis, it's a cancer. The mast cells look different. There also are more mast cells, but they're different mast cells.

So, I, in my experience, again, with, with, one patient that I've seen, but certainly I've read about the condition and I've certainly talked to colleagues about it. My, my feeling is that most of these patients with this condition have other manifestations of abnormal mast cell activity and that it is, would be in the spectrum of MCAS.

Jill Brook: And she had a follow on to her question saying, can it cause the same manifestations as MCAS? And so what's going through my head is, well, if you did have those other manifestations of MCAS, is it caused by the extra mast cells, is it caused by the extra mast cells in [00:40:00] your GI tract, or does it just mean that you probably have too many mast cells in other places too?

Dr. Tania Dempsey: I think, I think both. Yeah, I would, I would, I would venture to guess both. And I would say that I would, I would expect patients with this condition to have other systems involved. Because they probably have more mast cells elsewhere as well and more reactive mast cells.

Jill Brook: Okay. So we've taken up so much of your time. Can we ask one more question?

Dr. Tania Dempsey: Let's do it. Yeah, definitely.

Jill Brook: Okay. So it's again, a bit of a two parter. It's if the immune system gets weaker with age, does that mean that my MCAS will calm down in old age? And do you think that most people get better or worse with their MCAS at menopause?

Dr. Tania Dempsey: Yeah, so yeah, great questions. So the immune system is a very very complex system with which with different parts to it. And so this sort of [00:41:00] thought of, like, this thought process of getting older, meaning that your immune system doesn't work as well. It doesn't mean the entire immune system doesn't work as well.

It just means that there may be parts of the immune system that are not as effective at, let's say, fighting off viruses or bacteria. The mast cells themselves may still be inappropriate and doing the wrong thing. And so age may have nothing to do with it. And I certainly have patients in their 70s, 80s, 90s, who continue to have abnormal mast cell activation syndrome, despite the fact that they are in fact immunodeficient. They, you know, they, okay. Now I, I will, I will take that one step further and say that you can be immunodeficient, and I have a you know, pretty yeah, I would say a good number of patients who are immunodeficient from various perspectives. [00:42:00] Let's say they have low levels of immunoglobulins, low levels of IgG, maybe they have common variable immune deficiency.

And they have Mast Cell Activation Syndrome. So they have one part of the immune system overactive, one part of the immune system underactive. Okay, so that's, so age unfortunately has nothing to do with it. But, but the question about menopause is interesting. And theoretically, yes, some patients do notice that their, their symptoms if, if hormones are a trigger for them, and during menopause, they lose their hormones,

for some patients, they may. notice that some of their symptoms are better. Like, excuse me, we've seen like, asthma get better, migraines get better. There's certain things that could get better once they're through, you know, they're on the other side. Perimenopause itself could be, you know, really, really difficult.

It could be 10, 15 years or longer in length, and there's a lot of fluctuation of hormones during that time, and that could [00:43:00] definitely be a much more difficult time for, for MCAS patients. But on the other side of it, once you're through and the hormones are low, there's a subset of patients who notice that they, they do feel better in certain ways because they're not getting triggered by the fluctuations in the hormones. So, but, but, but I also have patients where not having enough hormones is also a trigger. So, again, everyone's different. So, some patients will need some hormone replacement therapy, and that may be good for their mast cells at a steady level of, of estrogen and progesterone. Maybe that's stabilizing for their mast cells.

For other patients, any exposure to hormones is going to be disruptive. So, again, always has to, always has to be individualized and, and you really have to take a really good [00:44:00] history and really talk to patients to really understand if this is the patient that needs hormones or doesn't need hormones or is going to be better or worse or, you know, I, I wish I could say, you know, it's always like this, and this is the way it is but what I've learned in this realm of MCAS is that everyone is so different, and I, and I can't predict, but I can predict based on the patient and what they know of their body, you know?

Jill Brook: Wow, that's so fascinating. And that explains why you and many of your mast cell specialist colleagues have to do a different kind of medical practice where you just spend so much more time with each person. I think about my doctor who walks out after six minutes, whether we're talking or not. And oh, yeah, you just can't

get to know a person's individual issues like that. So, so wow, we so appreciate all of this information and all that you do to help MCAS [00:45:00] patients all the time. Not just answering questions like this for us but you are amazing and we're really grateful for all your time and expertise.

Dr. Tania Dempsey: Thank you so much. I love doing this. And I love helping people, especially when, you know, there are answers out there that are easy to get. So anyway, I'm here for that. So I can't wait to do, we'll keep doing these because these are, you know, fun and hopefully getting the information out there.

Jill Brook: Yay! Okay listeners, if you want to consult the oracle, send your questions into research at standinguptopots. org. This is our second episode, so if you didn't hear the first episode, go back and listen to that one before you send in repeat questions. But that's all for now. We'll be back again next week with a normal episode of the POTScast, and we'll be back soon with another episode of Mast Cell Matters with Dr.

Tania Dempsey as our special host. So thanks for listening, may your health be good to you, and please join us again soon.