Stylized graphic of a human with mast cell disease.

In the latest episode of the “Allergy, Asthma & Immunology Innovations” podcast, we focus on mast cell disease symptoms and triggers. This is the second episode of a 6-part podcast series on mast cell diseases. The series is sponsored by Blueprint Medicines.

The podcast is a collaboration between Allergy & Asthma Network and The Itch Podcast. It is once again hosted by The Itch Podcast’s Kortney Kwong Hing and allergist/immunologist Payel Gupta, MD. In this episode, Kortney and Dr. Gupta are joined by allergist/immunologist Anne Maitland, MD.

Dr. Maitland sheds light on mast cell dysfunction, from headaches and nasal congestion to gastrointestinal issues and skin reactions like hives. Dr. Maitland emphasizes the importance of recognizing mast cell dysfunction’s impact across different organ systems for an accurate diagnosis and management.

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Timestamp overview

  • 1:30 – Symptoms of mast cell disease
  • 5:46 – How to connect the dots of mast cell disease symptoms
  • 6:36 – What is a sign that your symptoms are related to mast cells
  • 7:36 – Mast cell activation syndrome versus an allergy
  • 9:06 – Mast cells exposure to triggers
  • 9:54 – The job of mast cells and their scientific history
  • 10:46 – Is an anaphylactic reaction a mast cell disease?
  • 11:32 – What triggers mast cell disease?
  • 13:06 – Reaction to anesthetics or antibiotics used during a procedure and mast cell issues
  • 14:06 – Mast cell targeted medications and how this can hide your symptoms
  • 16:15 – How often do patients experience symptoms


Full Transcript

Kortney Kwong Hing: Have you ever considered whether your nasal congestion, IBS, brain fog, and hives are related? In today’s episode, we will dive into the complex world of mast cell disease with Dr. Anne Maitland.

You’re listening to The Itch, a podcast exploring all things allergy, asthma, and immunology.

Payel Gupta, MD: So today we’re talking about mast cells with, to me, the queen of mast cells, Dr. Anne Maitland. I’ve known Anne for a long time because we’re both New York City allergists, and I’m just really excited to have the opportunity to talk to someone that’s dedicated so much of their career into figuring out so much about mast cell disease. And like anything else in medicine, we’re learning more and more about mast cell disorders and how they present and how we should be thinking about patients with mast cell disease.

So Anne, let’s just jump right in. Can you tell us what the symptoms of mast cell disease are? When should a patient be worried that ‘My symptoms may be related to mast cell disease?’

Anne Maitland, MD: So first of all, good morning and thank you for the opportunity. We’re always looking for a chance to provide more information about a disease that just made it from the bleachers onto the front row.

So let me talk about symptoms. And again, if you remember that mast cells can misbehave, that’s kind of the term I’ve adopted, in any part of the body, let’s go head to toe. So what does it look like if mast cells are misbehaving in the brain? Headaches, brain fog, mood variability –sometimes you’re really excited and other times you’re a little bit down.

Brain fog in the form of, ‘I’m having problems with concentrating on sentences or doing tasks,’ almost like an ADHD or ADD type phenomena. Let’s move down to the nose and the sinuses. Nasal congestion, postnasal drip, fullness in one’s ear, itch in the nose, itch in the back of the throat, you’re sneezing, itchy watery eyes.

Let’s go down a little bit further and let’s talk about what might be going on in the throat and the lungs. So you could be coughing, you could feel like you have chest tightness or you can’t get a good breath in. And what’s really disappointing in this country is that nearly 10% or 11% of the population have asthma, but asthma is not screened for by general practitioners unlike hypertension and other chronic disorders.

So, a lot of asthmatics are under-treated and under-diagnosed. We have people who come into my office and they’re complaining about hives and itching and redness of their skin or swelling. And I’ll do an asthma questionnaire and also do asthma testing.

And lo and behold, they’ve been dealing with asthma for a really, really long time and just never knew it because nobody’s screened them for it. And so I usually encourage patients, if you’re having upper airway involvement, and if you have upper airway involvement, there’s a good chance that you have lower airway involvement as well.

So let’s move on to the other part. With the mouth and the intestines and the stomach, you’re talking about reflux, gastroesophageal reflux disease. That’s what Pepcid and Tagmed is about, but that’s also part of it. And so that irritable bowel syndrome clinic – we actually, there’s a good percent of those patients that probably have mast cells misbehaving, contributing to their symptoms.

So they’ll have bloating, food intolerances, they will have alternating diarrhea and constipation, where they might actually start not being able to absorb and start showing signs of not having a balanced diet, not because they’re not trying to eat a balanced diet, it’s just that the gut can’t absorb it.

They might have problems with water management, so now they’re starting to deal with constipation. I think one area, especially for girls and women, is what’s happening with their menstrual cycle, and also with their bladder. So we know that there seems to be a role for women if you have horrible menstrual cycles. You really should think about whether or not you have a mast cell disease that’s contributing to your really bad menstrual cycle or uterine cramps, for instance. We’ve seen significant improvement with women who have bad menstrual cycle episodes. If we add on histamine blockers, it seems to be very helpful for them.

You have bladder pain syndrome or interstitial cystitis, so burning or unable to enter your bladder or you’re just in constant pain.

Kortney: So that was a lot of information, and I’m going to kind of synthesize it, if you don’t mind. Also taking into account what we talked about in our last episode. So in our last episode about the basic science of mast cells, we discussed that mast cells are everywhere in our body.

Dr. Maitland, you so wonderfully described the symptoms from head to toe and that tells us that indeed mast cells are everywhere in our body and that the symptoms can kind of happen everywhere in the body from the head, so brain fog, to the gut, like IBS, to skin, like hives.  And another thing that I thought about is that a lot of the symptoms that you talked about are the same things that we would consider anaphylaxis. And I know that anaphylaxis is actually one of those common symptoms in mast cell disease.

Now, as a patient, I feel like something going on in my brain, something going on with my heart, something going on with my skin. I might not connect the dots and say, ‘Oh, this is mast cell.’ It just might feel like there’s a lot of random things going on in my body. What’s a way for a patient to kind of go, ‘Ah, this and this and this are actually connected through mast cells?

Dr. Maitland: If you think about mast cells, they are in every part of the body. And if they inappropriately release really potent chemicals.  They can cause symptoms in any part of the body. So, I usually tell patients, if you’ve ever developed a hive, for instance, you know, that redness and swelling and itch, well, what if that happens in the stomach?

What does that look like? What if it happens in the brain? What does that look like? What if it happens in the joint? What does that look like? And if you actually think about anaphylaxis, and mast cell disease overlaps that of symptoms that are associated with anaphylaxis, again, every single organ system, it’s just a question of recognition.

It’s much easier to see if you have skin symptoms. And I would have to say the one organ system that really seems to be underdiagnosed in this respect would be the brain. And then right after the brain, it would be the respiratory tract. So literally, if you’ve been dealing with chronic issues, and the standard medications that have been provided to you or by your practitioner or you’ve obtained from over the counter or natural food stores, because a lot of people invest in supplements without any guidance as well, and you’re not getting any better, maybe it’s time to undergo an evaluation by specialists such as an allergy and immunology specialist who has the opportunity to speak to a lot of these presentations. Because in many ways, as an allergy and immunology specialist, I feel like a generalist with a specialist eye.

Kortney: So I have rhinitis, asthma, and anaphylaxis, and what you just said, Dr. Maitland, I feel like I could have mast cell disease. So how do you know if it’s mast cell or if it’s something like an allergy?

Dr. Maitland: Great question, Kortney. To the point that we completely redefined how to describe individuals that have mast cell activation syndrome, which is what really caught our eye starting about 10 years ago. If you have one organ system involved, we describe that as a mass cell activation disorder. So if you have a runny nose after petting a cat, and you’re found to have IgE recognizing that cat, that’s considered allergen-driven mass cell activation disease of the nose. It’s much easier to say allergies though, right?

But if you have two or more organ systems, that come and go, and that can be any organ system, but again, we have a tendency to just focus in on respiratory tract, skin, gut, and cardiovascular in the form of palpitations, low blood pressure, somewhat overlapping the field of anaphylaxis – if you have two or more organ systems, you should suspect that you have mass cell activation syndrome.

So I kind of treat the body like communities in New York City. You can have a major issue happening in Little Italy and Harlem doesn’t feel it. So that’s the same thing about mass cells in the body. Because they’re in every single organ system, just because you touch the cat, maybe it just affects your eyes and nose, but it doesn’t affect the gastrointestinal tract.

So it can be very localized, or it could be whole body systems involved. And that’s what’s really confusing is because we’re not taught that. We’re basically taught individual diagnoses, but I really try to tell people, ‘This is how your body is dealing with the environment.’ And the triggers for mast cells inappropriately releasing these chemicals can be done from physical triggers – think about people who have hives when they come out of the water, or they have hives if they strike their skin, or they start coughing because there’s an airborne chemical. It all depends. it’s really location, location, location, on whatever the exposure is, and it could be a physical trigger, chemical trigger – chemical meaning naturally occurring like a stinging insect, or manufactured like too much breeze in the air. and it can be infectious.

If you think about what the job of the mast cells are, which I find really interesting – I’m a T cell biologist by training, so I actually had to relearn about mast cells. Mast cells were originally identified in the mid 1800s and really didn’t get a job until 1989, when they showed the relationship between IgE and mast cells. And ever since then, mast cells have just been profiled as a bad actor that needed to be eliminated, but if you think about it, we know of individuals that are born without T cells, we know of individuals that are born without B cells, or neutrophils, there’s not a single report of a human born without mast cells.

So it’s not a question about whether or not you have mast cells or you have mast cell activation. It’s just a question whether or not it’s mast cell activation for maintaining good health or mast cell activation for maintaining disease.

Dr. Gupta: So thank you. You know that I love anything with New York City. So I love that New York City analogy, Anne. So yes, Kortney, you technically do have mast cells being activated, but the reaction that you would have with a mast cell disorder would be a heightened one, where you would become so severe that you may even have anaphylaxis, as we mentioned, in response to something that shouldn’t normally trigger anaphylaxis.

So again, this is because you have either extra mast cells or mast cells that degranulate too easily.

Kortney: Thank you, Dr. G. Now, you mentioned a few things, and I am assuming that those are triggers when you talked about whether I would have mast cell disease or anaphylaxis. So can we actually get into that? Can we please talk about what triggers these symptoms?

Dr. Gupta: Yes, so mast cells can be activated through both what we call IgE and non-IgE related mechanisms. And we know IgE is the antibody that causes allergies. So this can be caused by allergic or nonallergic triggers.

In mast cell disease, technically anything can be a trigger and triggers can change over the course of disease. Other triggers are emotional or physical stress: pain, environmental factors such as weather changes, pollution, allergens, and then other factors including exercise, fatigue, certain foods, beverages including alcohol, drugs like opioids, antibiotics, and some local anesthetics and NSAIDs. And then contrast dyes, natural or chemical odors, perfumes, and scents. Venoms from insects or animals, such as bees, wasps, spiders, fire ants, jellyfish, snakes, biting insects like mosquitoes and fleas. And then infections, viral, bacterial, or fungal infections can also trigger a response. Mechanical irritation, friction, vibration, sudden temperature changes, heat or cold, and then sun or sunlight.

So, basically, anything and everything could trigger those mast cells from degranulating and releasing all of those chemicals that then cause a host of various symptoms that can be from mild to severe or anaphylaxis.

Dr. Maitland: Oh, here’s actually a very interesting observation. If you’ve had a procedure and you had an adverse event during that procedure, it very much is related to possibly the anesthetic agents or the antibiotics that were given to you.

So there’s another receptor that’s been recently identified that’s been shown to participate or trigger adverse reactions to certain medications – Vancomycin, general anesthesia. A lot of people will complain like I either didn’t go down or they had a hard time getting me out from the anesthesia from the procedure. Or they had an adverse event like flushing their hives or changing their blood pressure. And if you have problems with pain medications – so a lot of people have pain issues. If you have migraines, you really should have that evaluated as well, because the new set of medications that are being used to treat migraines, are anti-CGRP and CGRP acts directly on mast cells.

So we’re taking medications that happen to modify the activities of mast cells. They’ve not been billed as that. I’ll give you an example of a medication that depending on why you’re using it still is a mast cell-targeted medication. Are you taking Benadryl to sleep or are you taking Benadryl to take care of an itchy rash? Here you have mast cells involved with central nervous system issues like sleep and skin issues. You have Benadryl being over the counter as a sleep medicine, and you also have Benadryl over the counter as an allergy medicine. So which is it? It’s both. So that shows you that mast cells can be involved with sleep.

So if you have a sleep problem, if you have IBS, if you have any of those diagnoses, I would recommend evaluating for a more widespread mast cell problem. And people who have allergic rhinitis, for instance, nasal congestion, postnasal drip, which is 40% of the population. And all these medications are over the counter, so now you don’t need to go to a doctor. You can just treat yourself, but you’re treating yourself without knowledge about why that’s happening. And we have people who have, for instance – you might know some of the triggers, but you might not necessarily pay attention to other triggers. You’ll just take medication to quiet the exacerbation down.

And that’s what mast cell activation syndrome is. It’s a chronic disorder with recurrent episodes and flare ups. And a lot of people end up taking care of those flare-ups, but not thinking about why that might have happened. And some people actually can predict the change in the weather better than the weather person and that’s because the barometer change is enough to cause them to have a headache. So now if you take medications like the tricyclic agents, or the histamine blockers, you can prevent that from happening. And so that’s what people end up doing. They start taking these medications to prevent these physical triggers, which you’re accustomed to.

Kortney: So if people are having multiple disease states, like you mentioned, like migraines and, and/or IBS, and they’re taking medications for these, and these medications technically block mast cells from degranulating, then what you’re saying is that they might not be able to put two and two together, that being that the mast cells are actually the cause of the symptoms, but because they’re taking medication that blocks the mast cells, they don’t realize that?

Dr. Gupta: Yes, that is exactly it, Kortney. And with mast cell disease, it’s worth noting that some people with mast cell disease may experience, as we said, few symptoms intermittently or intermittent anaphylaxis, which is usually the one symptom, which is anaphylaxis, that prompts allergists to evaluate for mast cell disorder.

So that’s classically where people will think, ‘OK, something is wrong.’ This person reacted and had anaphylaxis without an explanation and should be evaluated for a mast cell disorder. Something may be wrong with their mast cells.

However, what we clearly have discussed today and what Anne has worked so hard to help people understand is that there are other patients that may have daily disabling symptoms affecting multiple organ systems on a chronic basis and that we should also be thinking about potential mast cell disease in those patients.

So again, it can vary widely and since mast cell disease has such a large spectrum of types, we just need to consider all of those types and be more vigilant about looking into mast cells as being the culprit.

Kortney: Great. Thank you so much, Dr. Maitland. Thank you, Dr G. That was a lot, and like literally a lot, because it’s like head to toe a lot of symptoms and a lot of triggers and what I’m really excited to jump into in our next episode is, how do you diagnose this? Because this is a big question mark I have after hearing all of those lists and I can’t wait to get into it. And Dr. Maitland will be joining us again to talk about diagnosis.

We want to thank Blueprint Medicines for their support of this mast cell disease series.

Dr. Gupta: Thank you for listening to today’s episode. Remember that all information you hear today is for informational purposes only and are not intended to serve as a substitute for the consultation, diagnosis, and or medical treatment of a qualified physician or healthcare provider.

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