Episode 306: We have a returning guest to the show this week, with Dr Jennifer Gaudiani returning for her second time. This episode is a deep dive into Mast Cell Activation Syndrome (MCAS) and eating disorders.
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Chris Sandel: Hey. If you want access to the transcript, the links, and the show notes talked about as part of this episode, you can head to www.seven-health.com/306.
Hey, everyone. Welcome back to another episode of Real Health Radio. I’m your host, Chris Sandel. I’m a nutritionist and a coach and an eating disorder expert, and I help people to reach a place of full recovery.
I’m currently taking on new clients at the moment, and I truly believe in full recovery, despite what your eating disorder may be telling you. After working with clients for 15+ years, I’m very good at helping people get to this place of full recovery. So if you are exhausted of living with an eating disorder and you are ready to do what it takes to get to a place of full recovery and the things that this will deliver in your life to have that freedom, I would love to help.
You can send an email to info@seven-health.com, and if you just put the word ‘Coaching’ in the subject line, I can then send over details of how we can have a call to figure out if we’re a good match and the way that I work is the right fit for you. And then we can start working together on your full recovery.
So today on the show, I am having a guest episode. My guest today is a returning guest; it is Dr Jennifer Gaudiani, or Dr G. Dr G is the founder and medical director of the Gaudiani Clinic. She’s Board Certified in Internal Medicine. She completed her undergraduate degree at Harvard Medical School, at Boston University School of Medicine, and her internal medicine residency and chief residency at Yale.
Dr Gaudiani served as the medical director at the Acute Center for Eating Disorders prior to founding the Gaudiani Clinic, which is a Denver-based outpatient medical clinic dedicated to people with eating disorders and disordered eating. The Gaudiani Clinic provides a weight-inclusive medical care and embraces treating people of all shapes, sizes, ages, and genders. The Gaudiani Clinic is licensed to practise in 48 US states via telemedicine and offers international professional consultation and education.
Dr Gaudiani has lectured nationally and internationally, is widely published in the scientific literature as well as on blogs, is a fellow of the Academy of Eating Disorders, and is a former member of the editorial board of the International Journal of Eating Disorders and the Academy of Eating Disorders Medical Care Standards Committee. Dr Gaudiani’s first book, Sick Enough: A Guide to Medical Complications of Eating Disorders, is available on Amazon.
As I said, Dr G is a returning guest, and this is actually the second time she’s been on the show. The first time was – the episode got released in early 2020, and it was Episode 180 on the show. I’ll link to that in the show notes, and I highly suggest that you check it out. In that episode, we focus on Dr Gaudiani’s book Sick Enough and many of the topics from that. But in this episode, we’re really focusing on just one topic, and that topic is MCAS, or mast cell activation syndrome.
This is something that Dr G has been really diving into and focusing on for many, many years. She wrote a four-part blog series on the topic that is an incredible forerunner to this. I’ve added that to the show notes and I definitely recommend checking it out. I read that four-part blog series and I learnt so much from it, and I knew that was just the tip of the iceberg, so I wanted to get her on the show to discuss this.
As part of this episode, we chat about what MCAS or mast cell activation syndrome is; what mast cells are and how they become a problem when they’re behaving in a way in this syndrome; how and when it develops and some of the factors that can cause it; some of the main symptoms of MCAS – and I think this can be really helpful to then reflect on yourself and reflect on other people in your life, to think “Is this something that could be going on?”
We look at the connection between eating disorders and MCAS. Eating disorders is where Dr G has focused for so many years, so for her to now be focusing on this, it’s because there is this important overlap, and there is a very high percentage of this happening with people with eating disorders. We look at how it is diagnosed and some of the disagreements around this and the different camps with this. And then really most importantly, we look at how to treat it. This includes trigger avoidance, medications, and nutritional considerations.
This really is an incredible episode. I learnt a ton from us having this conversation, and I know that you will too. It’s maybe one that you’ll want to listen to multiple times or have a pen and paper handy to jot down notes. With the transcript, you can then go back and reread those, so I definitely recommend doing that. It really is a topic that I believe in the next 5-10 years will become a lot more widely talked about, especially connected to eating disorders – or at least, that is my hope.
So this is an incredible episode. I’m really grateful for Dr G’s time. Let’s get on with the show. Here is my conversation with Jennifer Gaudiani, or Dr G.
Hey, Dr G. Welcome back to the show.
Dr Jennifer Gaudiani: Hi, Chris. I’m so psyched to be here.
Chris Sandel: I was looking the last time you were on – we actually released it in early 2020, but we recorded it in 2019, so not much has happened since then. [laughs]
Dr Jennifer Gaudiani: No, nothing. I can’t really think of any world events that are relevant at all.
Chris Sandel: Yes. So what I want to do today – I know in the last podcast episode that we had, we talked pretty exclusively about your book Sick Enough and lots of the topics that came from there. I want to suggest that anyone who hasn’t listened to that episode go back and listen to it. We cover a lot about your story, how you got into doing what you’re doing, and then a lot of topics from that book, and I had a lot of great response from that episode and people reaching out. So if you haven’t listened to that one, I know it’s from four and a half years ago – it still stands the test of time. So check that out.
But today I want to talk about MCAS, or mast cell activation syndrome, which is something you’ve been talking about a lot more recently. I haven’t really covered it in any detail on the podcast apart from it being mentioned in passing conversations, so that’s really what we’re going to talk about for the entirety of today.
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Before we do that, for anyone who doesn’t know who you are, do you want to just give a little background on who you are, what you do, that kind of thing?
Dr Jennifer Gaudiani: Sure. I am an internist who specialises in eating disorders. I’ve been doing this for about 16+ years now, first at a very acute hospital level, helping to medically stabilize critically underweight adults with anorexia nervosa, and since 2016 operating as an outpatient, sort of GP for people with eating disorders and disordered eating in Denver, Colorado – opening my own clinic, the Gaudiani Clinic, and we see patients across the US. We do some international consultation. Of course, we can’t directly provide care without licenses.
And my colleagues basically care for what happens to the body in the context of a problem with eating. There are so many cool things that that touches upon, but that is the essence of what we do. We operate from a fully weight-inclusive, very autonomy-forward, highly individual focused framework.
Chris Sandel: Cool. As I said, if you want to listen to more about what that entails, then check out the previous episode.
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Let’s start with MCAS. How and when did you first become aware of it?
Dr Jennifer Gaudiani: As I opened my clinic in 2016, I had to come to a profound reckoning with how much I didn’t know. I was coming out of my prior job being like, “I kind of really know what I’m doing here, and I’ve got a lot of experience, and I have lectured internationally.” I started doing outpatient work and I went, “Oh, holy shit. I need to learn a lot.” It was tremendous fun because I love learning, and I just adore learning from my patients and their families. It required me to dive into the literature and to really keep my heart and my ears and my mind open.
In particular, I started seeing a number of patients with dysautonomia, meaning malfunction of the nervous system that operates below cognitive awareness, that keeps us running well – and in so doing, a lot of patients with postural orthostatic tachycardia syndrome, or POTS.
I consulted with cardiologists, I read the literature, and I would come to the seeming end of my toolbox with people still suffering profoundly, and I was like, “There has got to be something more that I can offer them” – because of course, many medical complications get vastly better, maybe even resolved, with full nutritional rehabilitation and general wellness and mental health care – but oftentimes those self-same medical problems are in the way of that actual recovery process.
So I’m trying to concurrently manage a bunch of things instead of just being like “Oh, just get better from your eating disorder and all these things will go away!”, because that is dismaying for patients to hear. They think, “But I can’t. I want to, but I can’t.”
As I’m trying to work on these things to help get barriers out from in front of their recovery, I start seeing this term ‘MCAS’, or mast cell activation syndrome. I start reading things like “In some patients, especially with hyperadrenergic POTS” (a particular subspecies of POTS) “unless you treat MCAS, they won’t get better.” I was like, “What is this MCAS business? Sounds like I need took now this.”
I did a bunch of reading, and as I started to read the symptoms, I had an absolute ‘holy shit’ moment. This was probably 2017-ish I really started to see this. I started to learn, to read, to join a great provider’s Listserv that’s led by some of the international experts in this field, and I started gingerly trying to do what I could as I read to see if it would help my patients – and it did.
And then I started reckoning with “Oh man, thinking about all of the patients who had symptoms I couldn’t help, and I couldn’t attribute to something in the past, in my prior work, and I thought “I bet they had this too.”
Once my eyes were opened to it, I started engaging in more treatment, learning, learning, learning, learning. And at this point, not surprisingly, a number – a surprising number, perhaps – of patients who call into our clinic from around the country to establish a first provider appointment who say, “I’ve got this eating disorder, I can’t get out of it. I have all of these medical things wrong with me that no-one can figure out, and they’re keeping me from getting well” – so often, the final common denominator turns out to be MCAS.
Chris Sandel: I think so often, things get chalked up to “Well, you’re malnourished; of course this happens. When you’re malnourished, yeah, you have more sensitivity to certain foods, or you have more digestive issues. Or yes, you get more headaches. Or maybe it’s because there just haven’t been enough nutrients that you’re having issues connected to your skin.” There’s always this explanation that can be coming back to “You’re just in a malnourished state and that’s what’s driving it.”
I’m saying this because this is what I would say for a very long time, because it was like, “This makes sense. That’s why this is occurring.” But I think what happens as you keep going with this is you recognise that a lot of these times when someone starts to do more of the nutritional rehabilitation, you’re not actually noticing improvement in a lot of these areas. What was originally like “This will get better as more repair is done”, we don’t actually necessarily see that, and that was why when I started seeing you writing about this, I became a lot more interested in it.
And I’m very much a novice with this. When it does come up with clients, I’m referring them to your clinic or to your blog posts connected to this, and that’s really why I want to do this episode.
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If we break down the word – mast cells, if we go back to simple science class, what are mast cells and why are they behaving incorrectly, or how is that having an impact on the symptoms someone is getting?
Dr Jennifer Gaudiani: Perfect. Mast cells are a type of white blood cell, part of our immune system, that everybody’s got. They are responsible for holding on to all of the histamine granules, essentially, the histamine chemicals, and thousands of other inflammatory mediators that are properly released, for instance, when you get a bug bite. The mast cells release and you get a nice hive, and it’s itchy and painful and inflamed, and this is part of the body’s response to something happening that wasn’t supposed to be there.
Mast cells should otherwise keep their contents to themselves. They should stay inside. Mast cells live all throughout the body, but in particular at the junctions of blood vessels and nerve endings. So as we talk today, I want people to think the whole time about what the impact might be on inappropriate release of intensely inflammatory contents at the junctions of blood vessels and nerve endings.
They are very rich as well everywhere that the inside of our body comes into contact with the outside world – so eyes, mouth, digestive system, skin, of course, genital urinary system, and lungs. Again, I want us to think about what we might expect could happen when you have a little dynamite ball ready to go off at the intersection of nerves and blood vessels everywhere that our body on the inside comes into contact with the outside.
00:15:27
Chris Sandel: What is then happening when it is this syndrome? Is it simply that more of these contents is then being released, and that is creating an inflammatory situation? Or there’s more to it than just that?
Dr Jennifer Gaudiani: In essence, yeah. What a bunch of experts have come to recognise – and this is really only over the last 15 or so years; this has not been known a long time, and we’ll go over the ways in which Western medicine has or has not accepted and embraced this whole concept. What people started to recognise was that actually quite a few, quite a large percentage of our population, was beginning to have multi-system symptoms with widely varying severities that seemed to reflect not an excess production of mast cells, but rather an excess degranulation or release of the inflammatory contents in response to what others find to be completely non-problematic exposures.
For instance, I, as a person with a tremendous amount of health privilege, who goes through the world being able to walk through the perfume department at the department store, being able to walk into a doctor’s office that has decided to spritz pretend flower spray into the air, being able to take a walk outside in the heat, being able to use products that are scented – because our society is inundated with those – without any health concerns, those same exact exposures might cause someone with mast cell to have everything from what I might consider relatively mild symptoms (hives and itchiness on their skin, a headache, and a tummy ache) all the way up to an anaphylactic reaction.
So as the doctors started to say, “Whoa, there’s a problem here. What’s going on?”, they started trying to understand how. How is this happening? To whom is it happening? What are the triggers? What are the treatments? And we’re going to go into all of that stuff today.
But fundamentally, it appears that in the last generation or two, probably – and I try to stay away from orthorexic-sounding statements, meaning I try not to suggest that we all must walk a very tight rope or else we’re all going to go into despair and misery. I generally think everything is onsides, and let’s live our lives. But probably the increase in exposure to forever chemicals, to the constant barrage of fake fragrances that surround us at all times, and who knows what else, has sensitized the mast cells of people who are genetically a little more prone to having them sensitized (because this is familial), and as a result, they develop a clinical syndrome that can vary in severity, but that can start to respond in typical ways and cause a tremendous number of health problems.
00:18:51
Chris Sandel: In terms of the genetics side of it, how much of this is genetics, nurture/nature, environment? All connected with genetics, but what is the driver for this starting to occur?
Dr Jennifer Gaudiani: Almost everybody I see with mast cell, once they know the diagnosis, goes, “My mom has this. My brother has this. My uncle has this. My cousin has this.” Almost everyone says, “Oh yeah, that makes sense.” And it might be quite different in presentation for them, but once they know the full panoply of symptoms, they’re like, “Yep, definitely.”
We think that mast cell may occur in up to 17% of the whole population. And again, that might be somebody who has minimal, rare symptoms up to somebody who’s in the ICU (intensive care unit) for anaphylaxis on a twice monthly basis. So we know that there is a genetic, heritable component. I don’t know to what extent yet. More research is needed.
And I also know that there’s a profound environmental component. In families who grow up near former disaster sites or major chemical dump sites, it turns out that the severity and the age of onset and the ultimate health consequences of mast cell are much more severe than for those who get to grow up in a place with fewer of those exposures.
Chris Sandel: When you’re thinking from an environmental, it’s more substances, toxic burden/load type thing, as opposed to the people who are having higher levels of trauma are also more susceptible to mast cells? Because it was interesting when I was reading through it – I thought of Dr Gabor Maté’s book all about When the Body Says No. So I was wondering, how much of that comes into this? And I know it’s so hard to answer because there can be so many different variables, but do you have a take on that?
Dr Jennifer Gaudiani: I do. My sense – and I continue to be a leaner as well, actively. I’m going to be going to a big national mast cell conference next month, and I can’t wait to keep learning. My experience is that without a genetic history and some sort of trigger, trauma on the whole is going to worsen mast cell, but might not be the first thing that lights it up.
I can talk a little bit about what that light-up moment could look like for who gets this and what it looks like – because I’m sure people at this point are like, “What is this? What are we talking about?” We’ll go into all of the symptoms in a moment.
But essentially, most people with mast cell, if you look back carefully at their narrative history of their experience in their body – and taking a mast cell history requires time and thoughtfulness and a real desire to go back and talk through everything they’ve experienced, not through the lens of having been told “This is nothing, you’re just sensitive, this is just your eating disorder” but really, “What did you experience in your body?” – many patients will say that they have a history of constipation since childhood. That happens to be something that seems to be quite common. And a few times at least in their childhood, they had a weird episode of unexplained meaningful rash. Juicy hives, something dermatologists just weren’t sure about, allergists weren’t sure about. Or maybe they had a meaningful allergic reaction with no obvious trigger, and people shrugged their shoulders and were like, “We’ll watch. I don’t know what this was.”
Those children might have also experienced that smelling fake scents, perfumes, gave them a headache. They tended to be more itchy than their peers in general. Maybe hot days made them more fatigued than their peers. And maybe they had more tummy aches than their peers.
Then typically, there’s an experience. For many who menstruate, that experience is their first period. Mast cells have a ton of oestrogen receptors on them, and oftentimes when oestrogen really rises, that takes somebody from the potential for a mast cell issue into a full-fledged mast cell issue. A number of my patients will say, “Looking back, I did actually start to feel crappy when I was 10, 11, 12, 13. I just felt my health worsened. I never really examined it because, I don’t know, it was just my life. That’s what I was living. But my health got worse. I felt oftentimes like I was coming down with something. I had that achy, slightly feverish feeling that wouldn’t necessarily manifest. My digestion got worse.” And oftentimes that’s when eating disorders start.
Chris Sandel: I was about to say the exact same thing.
Dr Jennifer Gaudiani: Narratively, people are like, “Of course, because your eating disorder started, so you felt crummy.” And again, yes, of course eating disorders don’t make your body feel good.
So people start to say, “My health got worse.” Males get this too. Testosterone does not seem to be a really triggering hormone, necessarily, but people may find that they’ll say, “I went to travel in a country and I ended up with a bad GI illness. When I got back, my health has never been the same.” They might say, “I went through a terrible trauma when I was 15, and after that my health really deteriorated.” So a major psychological and physical stressor can be the flame that sets the mast cells on fire, and then subsequently, trauma can absolutely hike up the degree and persistence of the symptoms.
They might say that they just had a bad infection of some sort and thereafter they got sick. That’s often what happens. Some people don’t have symptoms until later in life, and it might take the intensity of recovering from an eating disorder that suddenly brings these symptoms. But those are the kinds of things that we think of as being the initiating, syndrome-triggering experiences.
Chris Sandel: With eating disorders, is there a higher prevalence of MCAS and eating disorders and that’s because maybe the MCAS is the driving factor for why someone develops an eating disorder? “I was a pickier eater because I was having so many tummy aches” or “I was a picky eater because I was trying to figure out what was giving me all this constipation” so it goes down that route? Is that the reason there’s this connection between the two?
Dr Jennifer Gaudiani: According to my narrative experience, absolutely. There are no studies yet on this, and probably my clinic is the best setup to do that study, and we just haven’t had the time to do it yet as we continue to take care of patients, primarily.
00:26:21
Let me rewind a little bit and talk about some essential symptoms, and then I want to tell you a couple of stories about how EDs and mast cell can get twisted together, and why it really matters in my line of work.
Mast cell can involve every single system in the body, essentially, but especially the ones we talked about earlier where the inside of the body contacts the outside world. Patients might have one, or more often multiple, of the following:
On the skin, they might have a tendency towards hives or unexplained rashes or just itchiness, without seeing any particular rash at all. They might also sweat much more than average, especially when changing temperatures. People with mast cell might note that after they eat, they don’t feel good because when their mast cell is uncontrolled – and we can often really improve all of these symptoms with good treatment – plain old food acts as a trigger for this inflammatory reaction. So they eat a sandwich and suddenly their stomach is on fire, they’re bloated, they have diarrhoea or they have constipation, terrible reflux. They really have negative conditioning that tells them “Food makes me feel sick.”
They might even have something less obvious, like after eating they just feel tired and achy with some joint pain, and they just don’t feel well, or they feel like they’re coming down with something. All of these are subtle symptoms that our bodies are watching. And we know what happens when mammals are exposed to negative conditioning: they become avoidant. That is absolutely human and appropriate. And they might not even recognise what’s happening, but their body naturally tries to drift away from food.
People with mast cell will often notice that they have a runny nose after they eat, or a cough after they eat, or they have to blow their nose. They might find that they’ve got asthma that’s never really responded normally to asthma medications because it’s not primarily, as an asthma, a problem of over-tight, tiny airways, but rather of little explosions of inflammatory mediators throughout the lungs in response to something that is breathed or taken into the body.
Most people with mast cell feel that they are allergic to alcohol. This is a really interesting high-level umbrella. Not all, but most say – and even by the time they come to see me, I’ll say, “How do you tolerate alcohol?” “Oh, no, I never, ever drink.” Maybe they say “I smoke pot, but I never, ever drink because my stomach feels so terrible afterwards, I’m so flushed, I get this lacey pattern on my chest going up into my neck, and the next few days after I drink, I can actually feel so depressed, I have suicidal ideation. So I’ve just learned I do not tolerate alcohol.”
A lot of patients also feel a sensitivity to scents and to heat. People will say, “I’m allergic to the sun. If I’m in the sun for any amount of time, I turn beet red, I don’t feel good, my hands and feet swell, and I actually retain water for a few hours. I just feel awful. So I’ve learned that I don’t tolerate the heat and the sun.”
People with mast cell often also say “I’m allergic to my period.” They have terrible periods. They’re really heavy, and the cramps are horrendous to the point where they’ll often go through diagnosis for endometriosis only to be found not to have it. Again, they’re told, “That’s just life, I guess, for you.” But that’s not fair. The reason periods can be heavy in those with mast cell is that there’s lots and lots of mast cells all through the genital urinary tract, as I mentioned, and one of the mediators that mast cells release is heparin, which is a blood thinner. So if you’ve got thinner blood, you’re going to bleed more before your body clots it off. And if you have inflammation all through your uterus and your vagina and your rectum, you’re going to have pelvic pain and severe cramps.
These are just a few of the symptoms, and I will say – and I’m sure you’ll list it in the notes – that I have a four-blog series on this that you referenced earlier with all of the details. But these are just some for people to start being like, “Hmm, do I have this? Does somebody I know? Does somebody I love have this?”
00:30:56
Let’s go back to what can happen at the start of an eating disorder. Let’s say that someone who may or may not have the traits that we associate, stereotypically, with someone who might have an eating disorder, has mast cell. As they hit adolescence or a particularly stressful period in their usually teenage life, they start to feel sick when they eat. They might at that point go, “Hmm, I don’t know, I’m not as interested in eating” and they might reduce their food intake. Or they might go to a super well-meaning physician or dietitian who says, “Let’s cut gluten, let’s cut dairy, let’s cut soy.” Common things to do these days.
That might actually make the person feel a bit better. Interestingly, there is a pretty high prevalence amongst my patients of gluten intolerance that’s non-celiac. So I’m all pro carbs, but that might have to occur within a gluten-free context. But in their youth, before this is identified, sometimes people are like, “I can’t do this.”
They might also say, “I think I’m allergic to sweets, so I should cut out sweets” – because interestingly, those with mast cell are highly reactive, most of the time, systematically to artificial food dyes. And I know that sounds so orthorexic. I believe in candy, I believe in all of the things. Usually for my patients with mast cell, though, they’ve got to have organically dyed stuff.
One of my patients might say to me, “Oh, this explains why I can eat a candy bar, but if I eat M&Ms, I get really flushed and itchy and my tummy hurts.” So people may assume they’re allergic to sweets when in fact they’re just allergic to ones like birthday cake that’s got the piping on it, etc.
So as they start to reduce their intake of food and resist food, many of them, although not all, will lose weight. And there’s nothing our society is more sickly obsessed with than seeing someone lose weight. So then they get inundated by all of the really unfortunate positive reinforcement of weight loss, and then that starts to set off a little bit, “Wait, was I a problem before? I do like this praise. I live in the world; I can see what thin privilege gets you. I can see the power as a teenager of weight loss and of thinness. Interesting. I surely shouldn’t go back to eating those things, then.”
Or even if there is absolutely no body consciousness – let’s say that in kids and teens who are on the spectrums and in people who have high sensory reactivity, they might just be like, “Yeah, I don’t feel good when I eat food and when I eat certain foods, so I’m just not going to.” So you can see a pathway towards anorexia. You can see a pathway towards potentially binging and purging, because anyone who restricts has the biological tendency towards binging. You can see a pathway towards binge eating disorder. And you can see a pathway towards ARFID because you’ve got these systemic symptoms that don’t relate to somebody who wants to change their body, but they won’t eat, so they end up malnourished.
What most of us as eating disorder providers see is the later stage version of this, whether that’s 6 months or 6 years or 16 years down the road. All we hear is someone who, as a teenager, didn’t want to eat very much, and slowly started to lose weight, and then we attribute everything backwards to this.
Chris Sandel: I think so much of the stereotype and narrative around why eating disorders start – and this is particularly connected to anorexia, but I think for most eating disorders it’s the same kind of thing. The longer I’ve done this, the more I recognise that for the vast majority of people, that’s just not true. Or it became true later on, but it wasn’t the initial driver. It was because of digestive issues, or it was because we discover they’re on the autism spectrum, and that was the thing that was really driving this.
I think it can be very easy to miss that, and then people, when they read the DSM or they listen to podcasts about eating disorders, can feel like “I’m not sure this is really me. This doesn’t actually make sense for my experience of why this started or how I even think about it. I don’t want to put on weight, but I don’t really think it’s actually about this thing.” So I think it’s really helpful that you’re mentioning this, because it’s something I talk about a lot because it is so common.
Dr Jennifer Gaudiani: That’s exactly right, and there’s a really interesting meta problem to all of this that deepens the stakes, which is that in eating disorder recovery work, we want patients to get to a point of body trust, of self-efficacy and self-advocacy. And yet if, their entire lives, every person in power in their lives has said, “The symptoms you experience are due to your eating disorder, are due primarily to your eating disorder behaviours” – or “We can’t find any problems on your bloodwork. We think you might be making it up” – I cannot tell you how many patients I’ve had who’ve gotten the diagnosis of somatic symptom disorder or who’ve actually been queried as to whether they have Munchausen syndrome because no-one can explain what’s going on in their bodies.
The consequence of that relentless medical gaslighting, even if it was unintentional, is that people come even more deeply to disbelieve their own somatic symptoms. We can throw around the fact that people with eating disorders often cannot connect with their actual physical symptoms, but what if all of their lives, we, the institution of providers, told them “You’re not experiencing what you say you’re experiencing”? Or “It’s not due to a cause you think it is”?
It actually causes a deep medical trauma that can way complicate a recovery process.
00:37:33
Chris Sandel: I agree. Maybe we’re going off on a slight tangent here, but how would you like to see things different? If you had a magic wand and you could change things in the way that eating disorders are treated, what would you suggest?
Dr Jennifer Gaudiani: Great question. A couple of things. First of all, greater awareness amongst the eating disorder community that this is real, that it can be treated and improved, and that in the act of validating the patient’s lived narrative experience in their body, we start to help the trauma be processed and healed while we’re healing the body itself, and allowing it to tolerate food comfortably again and to be able to live in the world with a much higher quality of life again.
That’s the essence of it, and it’s podcasts exactly like this that really are a megaphone for getting the word out. But I actually believe that if all eating disorder providers knew how to recognise mast cell and name it as at least a reasonable possibility and help patients towards high-quality resources that would improve their lives – because there’s lots of things people can do without a physician involved – I think that eating disorders would be prevented. Not all of them, but a meaningful number. I think that recovery would be faster, and I think that we would see people much less often end up in a chronic state. So to me, the stakes are huge for something that’s a relatively easy sell.
00:39:09
But maybe we need to talk about how the medical community has responded to the idea of mast cell, and indeed, how one diagnoses it. Should we go there?
Chris Sandel: For sure, because that is one of the things. I think there is so much saying that this is not a real thing. I think you’ve got on the one hand someone who’s trying to recover from diet culture, and a lot of the misinformation in that area, and I think it can almost feel like it’s the same thing. So the same person who’s like “Maybe not everyone needs to be not eating gluten; there’s some people who shouldn’t, but I’ve changed my mind on this, and now I’m hearing about this thing called mast cell activation syndrome, and a lot of people are putting it in that same bucket of this is just people being concerned about nothing.” So tell me your thoughts.
Dr Jennifer Gaudiani: There are essentially two schools of physicians who believe in mast cell. We’ll talk about the ones who don’t believe in it in a moment, but there’s two schools of folks who believe in mast cell.
One we call the consensus 1 providers. This is a group of providers who have been trained that the only way you can diagnose mast cell is if you have very extreme symptoms over multiple organ systems and very specific positivity in certain lab tests, including a tryptase level, especially in the course of a flare. This group of physicians – who still helps the field and treats these patients – says “Unless you have all of that, you don’t have mast cell, you can’t come to my specialty clinic, I can’t say for sure what’s going on.”
The group of physicians, not surprisingly, that I belong to is called the consensus 2 providers. This group of providers understands that following consensus 1 diagnostics might miss up to 85% of people with clinically relevant mast cell. That’s too high. That’s too many people missed. So our way of thinking is – and there are very specific criteria listed in my blogs, but fundamentally it’s: if you have typical symptoms over multiple body systems, with typical triggers for the onset of those individually non-specific – consensus 2 practitioners fundamentally understand that if you only follow consensus 1 criteria, you may miss up to 85% of people with clinically significant mast cell. And that’s too many to miss.
So our group believes that if you have a bunch of symptoms over a bunch of organ systems that are typical for mast cell, or any given individual one is pretty nonspecific, but as you accrue them, you start to have a picture that’s more likely congruent with mast cell, and there are classic triggers that seem to induce these symptoms, and the person improves when treated with medicines that typically help MCAS, then probably they have a problem with their mast cells.
And in the future, 50 years from now, will we have this super detailed classification system where we can always check labs and we can check genetics and we know exactly? I hope so. In the meantime, we’re in the wild, wild west with this diagnosis, still. So I’m not going to reject a patient for appropriate treatment if they don’t have a certain handful of positive labs, because it turns out – and the consensus 2 docs are always talking about this – that even when the blood and urine tests are done perfectly at a specialty lab – and that means they use a refrigerated centrifuge and they keep the samples at exactly the right temperature, because these things are actually hard to find on blood, oftentimes the tests are still normal.
So all the consensus 2 docs would like to see the full panel of labs done on these patients as long as insurance will cover it, because if you happen to be lucky that day and you get one that’s positive, hallelujah! The consensus 1s will agree as well, and you just have more options, in addition to having more self-validation, because we know those with eating disorders have a tendency already to say, “I’m not that sick. Maybe I’m making it up. Maybe it’s not as severe as people are saying.” So to have a meaningful clinical syndrome that requires a lot of medicines without lab proof is pretty rough for people psychologically. So yes, let’s check the labs.
Another thing that can be checked that’s very helpful, if you can push your way past resistant pathologists, is somebody who has an upper endoscopy or colonoscopy with biopsies taken. You can just ask the gastroenterologist to run the tissue for a CD117 stain. While it hasn’t been perfectly validated, in general the consensus 2 docs feel that more than 20 mast cells per high-power field is two standards of deviation greater than the norm. So while mast cell activation syndrome isn’t about overproduction of mast cells, aggregation at the intestinal lining of more than usual inflammatory cells is highly suggestive. Those are the ways it’s diagnosed.
00:44:42
At our clinic, we have come up with a screener for our particular population of patients and then a very long questionnaire. These have not been validated, and they’re not for making the diagnosis per se; it’s for looking at, “Should we look deeper into this and consider trying to perhaps make some therapeutic interventions?”
I’ll share with you verbally with the screener looks like, because it’s short, and then I would be also super happy to share both the screener and the full questionnaire on your page so that people can look through, because often the full questionnaire, which is multiple pages long, as people start to tick things off, they’re like, “It’s this, and do you feel sick after air travel for a couple days? Yes. And this” – so it’s a really nice educational tool.
What we call the RASH-PF Mini-Screen is: R. Reactions. Do you feel you have physical reactions to foods, medications, scents, or body products? Yes or no. A. Alcohol. When you drink alcohol or use alcohol-based products like hand sanitizer, do you feel flushed, itchy, have abdominal pain or distress, worsened mood, joint pains, or feel ‘flu-ish’? S is Skin. Do you often get rashes, hives, or itchy skin? H is Heat. Do you feel unwell, swollen, rashy, itchy, or fatigued about spending time in the heat or sun? P is Pain. Do you experience pain regularly, especially join, digestive, head, or muscle pain? And F is Fatigue. Do you feel chronically or frequently unexpectedly fatigued? RASH-PF.
And if the patient says yes to 3 or more, we proceed to the full Gaudiani Clinic Mast Cell Questionnaire.
Chris Sandel: Nice. I want to find out about the group you said who don’t then believe in mast cell. One thing as you were going through that list – did you see a huge uptick in this during Covid because of the use of alcoholic sanitizer? So people who’d stopped drinking a long time ago because there was a recognition of “If I ingest this in beverage form, this doesn’t go so well for me” but hadn’t really made the connection in terms of “If I put this thing on my skin, I get myself into trouble”?
Dr Jennifer Gaudiani: Absolutely. These people who look like they’re wearing red mittens because they have such a reaction to hand sanitizer. What’s so interesting about your question, Chris, is that even more than that, as long Covid came onto the general horizon of people’s awareness, we looked at the symptoms of long Covid and a lot of the symptoms of mast cell, and they’re really similar. Really similar.
A study that a colleague of mine put out showed that people who had long Covid have a constellation of severity of symptoms that maps out to look very similar to people with active mast cell activation syndrome. The constellation and severity really look similar. This is not unknown in medical circles. That is, medicines that I’d routinely prescribe for mast cell started becoming hard to find as physicians elsewhere were like, “Wow, when we give this patient cromolyn, their long Covid gets better, or their hospitalisation seems to improve.” Not yet per se in the literature broadly but yes, the idea of long Covid made people more aware that a lot of these symptoms – we can apparently mistrust other patient symptoms, but we have to believe the physicians if they say they have long Covid. Suddenly people were like, “Oh, huh, look at that similarity.”
00:48:31
Let’s talk about the group of docs who doesn’t believe in this. Look, there’s a lot. I think some of the big referral clinics that often specialise in unusual diagnoses – I won’t name any names – have a policy that they will not see someone who claims to have mast cell. They’re just like, “No, I don’t want to deal with that.” There are a lot of allergists who don’t believe in mast cell or who are purely consensus 1. Not because in any way they’re bad people, but they just haven’t had the exposure to this new upsurge.
But I think the folks who are really starting to be like, “Holy moly” are the gastroenterologists who are getting inundated with people who are having these symptoms and having GI issues. I think that primary care doctors are starting to put their heads up and realise that this is a real issue. But unfortunately, as with care for people with eating disorders, care for those with mast cell, folks who’ve been forced to go online and figure out what they have and diagnose themselves and then be really strong self-advocates – medical care tends to be a little resistant, like, “Oh no, you’re going to be too complicated. I don’t really know about this. I don’t want to take care of this.” So that’s some of the resistance, too.
I would like to see some of the more higher levels of care eating disorder programmes in the US accept that this is real, that those medicines need to be continued when patients are hospitalised, it’s not ‘hooey’, and that if they were to start looking for this in their own screening process, they could really make people’s recoveries so much smoother and their health so much better.
Chris Sandel: Yeah, I totally agree. Since I’ve become aware of it, you notice it. It’s very easy to be able to recognise it in the current clients that I have, but also seeing back on the previous ones that I worked with and think, “Okay, now that makes sense.”
And it’s the same with so many different things. I’ve talked a lot over the last couple of years about starting to look more for neurodivergence in various forms. And again, it’s then amazing how much that comes up. Especially with something like autism, there is so much of a stereotype connected to that, especially that is connected to how it is in boys or young boys versus adult women. So I think the more we become aware of these things and start to recognise how they both interact where someone is now but also in the gestation of how the eating disorder started is a really important thing to be bringing into the field.
00:51:06
Then let’s talk about what to do about this. How do you actually treat mast cell activation syndrome? I know as part of the article, you talk about trigger avoidance, medications, and nutritional considerations. Let’s go through each of these. I know some of it you would’ve already mentioned in passing, but let’s go through each.
Dr Jennifer Gaudiani: Fantastic. One of the best pieces of news about a mast cell diagnosis (even though no-one wants a new diagnosis) is that it’s so validating of a lived experience, and there’s a lot you can do about it. Like, a lot you can do about it. It’s not one of those “Ooh shoot, this is a bad one. Ooh, sorry.” There’s so much that can give us hope that you can really improve people’s quality of life when you do these things.
I always say – this is how I’ve learned it – one, two, and three is trigger avoidance. Starting in our own homes – and this is as good data as we’ve got, and you have to keep in mind that I will always encourage people to live the biggest life possible – but in homes, get everything scented out of the house. And these days, our bin liners are scented and our pantyliners are scented. Everything has a scent now. So move to dye-free, scent-free everything. Dishwasher detergent, clothes washing detergent, soaps, lotions, hair products.
A number of patients will talk about before they were diagnosed, they just thought it was normal to have a very tingly scalp when they got out of the shower and to have significant swelling and hives on their skin. They were like, “Oh, I guess this is just what people do.” Nope, not necessarily.
And there’s a lot of items that supposedly are organic or that are very, very pure, but actually still have stuff that people react to. And what one person reacts to, another won’t. So here’s where, again, with an autonomy-focused lens, we say, “I’m going to believe your lived experience. You start to think about this in the world. You tell me what your triggers are and I will support you in helping avoid those.”
So, all artificial dye and scents out of the house. Sometimes people who have mild mast cell might be like, “Look, I love the smell of my shampoo or my perfume. It doesn’t bother me.” Okay, great. If it doesn’t bother you, be the minimally restricted you can live, of course. But if things are really severe, we’ve got to really look at it.
I have patients who will do all of that but they’ll be like, “Oh my gosh, Dr G, I can’t stop coughing, I just don’t feel good, I’m in a flare” and we’ll go through triggers again, and I’ll be like, “By any chance, since Covid, are you still using bleach wipes?” “Oh yeah, definitely.” “I see. And are you using pretty intensive bathroom-cleaning materials?” “Oh yeah, of course.” “All right, we have to get rid of those.” We have to go much more natural, low chemical exposure. It’s not just not using air scent candles; it’s also about really avoiding major chemical exposures.
That is a huge help. Avoiding alcohol completely is a huge help as well. And that’s yucky for people. People who otherwise don’t have alcohol use disorder who are like, “But…” And the answer is there. You are the boss of your body. If it’s time for a wonderful celebration or occasion where a toast is going to feel right for your quality of life, you know how you’ll feel. You get to do that. If you’re not going to feel great for a couple of days, okay. That is your business. I’m never going to chide you for that. You are the owner of your body.
We want to avoid intense heat. For athletes or really for anybody who exercises, just the act of raising their own body heat in the course of exercising can make them quite itchy and have a tummy ache or a headache or not feel good emotionally. Because actually, mental health – I don’t think I listed it in the original list – is very strongly impacted, because essentially if you have a bunch of fireworks of inflammatory modulators going off in your brain, it’s not going to be good. Having a bee-stung brain is not good for you.
In fact, some folks are diagnosed improperly with bipolar II who actually find that this really levels out completely on mast cell meds. That is not to say that all with bipolar II should stop their meds and start mast cell meds by any means, but it just means that this is a helpful addition.
Another interesting important trigger when it comes to dyes is, what’s in our pills? A lot of patients with mast cell – I’m probably not allowed to give you the article to repost because that’s against publishing law, but there’s a really cool article – people could write you for it or me for it and we could just send it individually to them – that talks about what’s called the excipients in medications. Excipients mean everything from the colour to the fillers that surround them. Many patients learn, for instance, that they are super reactive to polyethylene glycol (PEG), which is in cosmetics, it is in medications, it’s in MiraLAX. it’s considered to be a completely benign substance – which it is, except for those for whom it’s not.
So working with one’s prescriber, if you realise you’re one of the ones who’s really reactive to dyes, to try to have a white, uncoloured version of your pills – or, where accessibility and finances allow, to make a compounded version of medications where they can be very careful about what to put in them. But there are really interesting accounts of folks who are well-controlled, living a good life – the manufacturer changes for their daily blood pressure pill, and all of a sudden they’re throwing up, they can’t tolerate food, they feel like crap, they can’t sleep, etc., and it’s just that one little change.
Many with mast cell have a mild version that’s not that sensitive, but for those listening to this who are like, “Oh my gosh, this is me and I’m sure I have one of the more severe ones”, these kind of details matter.
And it’s worth noting, this is exhausting. It’s deeply annoying to have to be watching the whole world for potential triggers. And there’s nothing to do but validate that and be like, yo, dude, I’m so sorry. Yes, this sucks. It’s really hard, when you’re surrounded by an environment with things in it, to know why you feel worse on one given week than another. It’s so hard, and you can’t always know it. You just do the best you can.
Avoiding adhesives is really important as far as triggers. After surgeries, people may find they’re very hive-y under standard, nice dressings. I’ll leave triggers there, but those are some of the ones that we think of.
00:58:06
Chris Sandel: On the triggers piece, do you have a handout that you give to your patients of “These are some of the recommended” – whether it be cleaning products or stuff that you use around the home or on your face or whatever it is, that we know are not just organic but actually have the things in them that they should and the things that they shouldn’t? Because when I hear all that, I can hear someone going down this huge rabbit hole, and when you start searching for that, alongside a lot of that information, there’s going to be a lot of other information that will feed very much into someone’s eating disorder.
Because a lot of the time, before you had talked about mast cell activation syndrome, where I’d heard it before many, many, many years ago – when I think about a lot of the information that was put out alongside that, it did feel quite orthorexic. And maybe that was me judging because I didn’t know enough, and maybe that was actually really great, fantastic information and that’s exactly what people should’ve been doing. But at least my take at that stage was, “Not quite sure about this.”
So I don’t know, but my sense is a lot of the people who may be talking about this, there’s a lot of extra information that’s going to be unhelpful.
Dr Jennifer Gaudiani: You’re so wise to think that way. I don’t have such a sheet. Sounds like I should make one. And a little disclaimer that in no way does anything I mention have anything to do with – I don’t have any financial relationships with any of this. That’s really, really important to say because a lot of people who tell you “Buy this, don’t buy that” do have a financial self-interest in recommending something over another. Fortunately, nobody in our clinic does.
But you’re right, I would prefer people get information from my website, my blog, etc., then to go down a rabbit hole online because there are a lot of people out there who, whether it’s for their own enrichment or because they’re still deeply engrossed in diet culture, are going to recommend an ‘anti-inflammatory diet’ or ‘vegan only this’ and you’re like, no, no, no. Nope. Always, it is the least restrictive lifestyle possible for you to feel well.
Respecting that, in one given week, you might have rotten reactions to common things because it’s finals week, because you’re in a really tough place with your partner, because there’s financial stress in your home. Because stress really can escalate mast cell symptoms. And then the next week, as things are calmer, you tolerate them again. Our core eating disorder patients like a ‘yes’ and a ‘no’ – and frankly, a lot of us providers do, too. But in mast cell, we actually have to be much more flexible and say, “All right, for the last month, you were off gluten. Things are better now. You’re telling me you’re really missing it and it’s triggering to you to avoid it. Why don’t we try it for a week? Let’s see how you do.” And oftentimes it is re-introducible.
That’s an important point, because people are like, “What’s the list of things you don’t tolerate?” Or the classic eating disorder programme is like, “What foods are you allergic to?” Well, on a given week, somebody with mast cell might not tolerate a bunch of things but then tolerate all of those same things in a subsequent week, which increases provider disbelief – but it comes back to: believe the patient’s lived experience. Does the eating disorder at times have motivation to tell untruths to us? Of course it does. But in the final analysis, I can’t be seeing myself as some great lie detector. My point is to sit here with patients and to establish a relationship in which they can honestly tell me what they’re experiencing, and then I can provide care with the data they give me.
Chris Sandel: I think the stress piece is the biggest trigger. Yes, there are all these other things, but when stress increases, this is typically where everything starts to get a hell of a lot worse. The things that used to be a very mild trigger become a much bigger trigger, or the thing they used to be able to definitely do, they now can’t do at this point in time. Especially when you layer a couple of those on top of one another, so there’s this financial stress, there’s this thing going on with their boss, it’s also incredibly hot and I don’t have A/C, and I’m not sleeping well. You then stack all of those together and now it’s like “Whatever I do, I feel like I’m standing on a landmine.”
Dr Jennifer Gaudiani: That’s precisely it. I love the bucket metaphor that people use in chronic illness to understand, “Where is my bucket?” It has further implications through a model that I came to understand from a neurologist about how those with multiple sclerosis experience their underlying symptoms even when they’re medically well-controlled. What we say is a mix of the MS neurology model and the bucket model that we use for chronic illness.
Imagine that we’ve got a tank and it’s got corals of different heights in it. The tops of the corals, if they’re out of the water, reflect the days you feel those symptoms. This is the numb foot symptom, this over here is the abdominal pain symptom, etc. When our tank is full – that is, like you said, we’re emotionally nurtured, we’re well-nourished, we’re well-slept, we’re not experiencing toxic stress, we’re being kind to ourselves – the tank is full, and you might actually not uncover any corals and you don’t have any symptoms.
But when the bucket decreases, and the more it decreases in just the ways you mentioned, you have more and more corals sticking out, and you’re going to have more and worse symptoms. I think that can really help give people a sense of compassion for themselves for the days they feel like crap and that’s frustrating. But also, it gives them agency to some degree, because they can say, “I can’t manage the toxic boss, but I can choose to put my phone down tonight and get to bed really early. I can choose to nourish myself tenderly today and make sure that no matter what, I’m getting everything that I need. I can choose to stay indoors on this sunny Saturday that I’d like to be outside just because my tank needs to refill.”
Chris Sandel: In terms of managing expectations with the triggers, when someone is getting to a better stage where the medications are working and things are environmentally better, is it that we’re going to get to a stage where you’re bringing alcohol back into your life and you’re bringing these things in? Or is it more likely that there’s things that that’s how it’s going to be for the rest of your life? This is a really permanent thing, and the majority of these triggers don’t really get better? What does that look like? I know that’s a fairly broad question.
Dr Jennifer Gaudiani: A lot of triggers can get all the way better. For instance, I had a patient a number of years ago who did not have an eating disorder, per se. If anything, we might characterise her as ARFID, because she’d been through rounds of SIBO treatments (small intestinal bacterial overgrowth) and she couldn’t eat. She felt awful every time she ate. She’d lost a lot of weight. It was not welcome to her at all. She really was scared she wasn’t going to survive.
When we started working together, for a stretch of time, while she had a great RD with mast cell experience and a great therapist and me as an internist, who was learning and working alongside her, all she was able to actually nourish with was elemental shakes. Like, fully broken down, they had all the pieces of nourishment she needed and they had the calories, but they tasted like chalk and they were not particularly nice. But with no resistance to caloric intake and a profound motivation to feel better, she was able to restore weight while we got the right medicines on board and while we took out other triggers.
And then – maybe it was six months later – she started being able to reintroduce foods. By the end of her time with me, she was eating nearly all foods. She was completely weight restored. She was living her life well. She almost never had a single symptom. She continues on medications because that’s going to be probably a lifelong thing. People can be like, “Ugh, really, forever?” Probably. But it’s worth it if you’re living a very unencumbered life, as an example.
With alcohol, it’s interesting. If somebody, for instance, has concurrent alcohol abuse disorder and mast cell, that is a fascinating problem because now we have a really great physical symptom or set of symptoms that immediately give feedback, “Hey, this is not for you.” When you treat mast cell and they can have a glass of wine or beer again, it’s really tricky, because they’re like, “Ooh, I don’t feel so bad anymore. Maybe I can have some.” So that requires a multidisciplinary, supportive, over time, approach.
In general, obviously if somebody has alcohol use disorder, I’m going to recommend abstinence. And if someone has mast cell that frequently has pretty bad flares, I’m just going to say stay away from it unless there’s one or two days a year where it’s a must.
01:07:28
Let’s talk about meds. Let’s talk about some meds that people can actually take without ever having seen a physician. And I want to be cautious. If I’m a physician saying people could take medications without even seeing a physician, I’ve got to be thoughtful about that, and not cavaliere.
The things I’m going to talk about that people can start with are available over the counter. They are not wildly expensive. And they have an extremely low risk of harm. That’s the context in which I’ll start thinking about this.
First, almost every patient with mast cell, as long as they tolerate these medications, needs to be on an H1 and an H2 blocker. H stands for histamine. The H1s are the non-drowsy-making allergy medicines. You see anywhere in a grocery store or a pharmacy, loratadine, desloratadine, etc. These are the available little hay fever kinds of medicines. H2 blockers, probably the most common one available generally is famotidine. It’s actually for reflux or for heartburn, and people wouldn’t think that those two were related, but actually each one blocks a different histamine receptor.
So almost everyone with mast cell should be on actually a pretty high dose of those. Now, somebody might be fine when they’re on a low dose. The lowest dose that works is the right dose. So let’s say that once a day fexofenadine and once a day famotidine really help them. Their joints don’t hurt anymore, their tummy hurts much less. Great. But you can actually go up to almost four a day of each of those if you have to, during times of flare, essentially. Or when you think you’re going to experience a flare. So before an airplane trip, when changes in pressure can trigger mast cell, you might bump up your H1s and H2s the day before, the day of, the day after.
The only side effects of those that are really worth considering are constipation and dryness. They really can dry you out. So if people get intolerably dry, okay, can’t do that. Some people do get sedated by the H1s even though they’re not sedating. Okay, maybe you take that one at bedtime.
And Benadryl, or diphenhydramine, is the more sedating allergy medicine you take if you have a really big allergic reaction. It’s almost always sedating for people, but it’s a good rescue med if you’re having a really bad flare or you’re going to bed feeling awful. You can take a diphenhydramine and actually feel better. I would start everyone on that.
Which one to pick among the H1s? Historically what we say is that each patient is going to have one that works best for them, and we cannot predict which one it will be. So to the extent that finances allow, you might want to try two weeks on a couple of different ones and see which one makes you feel best.
Another over-the-counter med that’s really helpful is diamine oxidase, or DAO. This is a medicine that helps block histamine release after a meal. It’s over the counter. Usually DAO is porcine-derived. It’s made from pig. So for those who are no-pig or who are vegan or vegetarian, there are pea-based DAO vegetarian versions that can be given as well. That’s just one with each meal.
Those who have pure histamine intolerance often feel “Okay, just put those three” and you don’t need to go any further. They don’t have full mast cell activation syndrome; they’ve just got some histamine intolerance, and it’s mostly GI and they feel better.
There’s a really nice herbal called quercetin. It is naturally yellow. That doesn’t mean it’s dyed yellow. And that is a natural mast cell stabilizer. Because remember, histamine is only one of thousands of mediators released by the mast cell. So ideally, we want some therapy that keeps the mast cell intact – and I will talk about one of the potential complications of longstanding mast cell activation that we haven’t discussed yet. But this gives a reason why you want to keep the whole mast cell together, and quercetin is really nice.
In kids, I don’t know about the indications. Talk to your paediatrician. And in teenage girls, it may have, at a high dose, a bit of a hormone-disrupting tendency, so I would probably not use it in teen girls, at high doses at least. Talk to your paediatrician about that, too. But it’s a really nice adjunct
Chris Sandel: Just in terms of if someone is doing this on their own, and you said if finances allow, try one H1 blocker for two weeks and then another one. With these medications, should people be bringing them in one at a time? Or is it okay for them to bring in all of them together and then try and play around with it? How do you suggest?
Dr Jennifer Gaudiani: The answer is yes. [laughs] We don’t know. It really depends on what the person’s sensations are about it. Some people really feel that they have a high reaction to medications and they need to put it in one at a time and at very low doses. Great. Others are like, “I am living in hell. Throw the whole kitchen sink at me. Start me on three or four things. Just make me feel better, and then we can tinker with it.” Either one of those is okay. Especially with these meds that have such a low risk profile. If you feel great on those four that I just mentioned, you might be like, “All right, let me ditch the quercetin and see how I feel. I actually feel okay now.” So you can tinker with it. Again, people’s sensations about what feels right to them is really boss.
I will leave out the prescription medicines that can be used because we’re not doing a podcast primarily for a medical audience. But I have all of those on the blogs and the rationale and why one would choose one over another. Individual, but there are certain things that work in certain ways.
Chris Sandel: With those, I’m assuming it’s the same, where you have someone and “Let’s try this one and see how that improves, and let’s try this one” and it is a little bit of a game of whack-a-mole, even though it’s knowledgeable whack-a-mole, just to figure out what actually works for that person.
Dr Jennifer Gaudiani: That’s exactly right. And what symptom we’ll try to address next. When my patients who are on a pretty good regimen are like, “Gosh, I’ve got a lot of joint pain. It’s worse after I eat. It’s interfering with my quality of life”, I might go to compounded prescription low-dose naltrexone. If someone’s like, “GI is where it’s at for me,” we’re going to start the prescriptions with cromolyn. So there’s ones where you can focus based on a symptom, and it’s almost always going to have positive reverberations to systemic symptoms too, even if it’s particularly good for one thing.
Chris Sandel: I know this is probably going to be hard for you to know as a percentage, but what percentage of people would it feel like just those over-the-counter meds are going to be enough to get them to a much better quality of life, where we don’t really need the other ones, or those other ones are a bit of the cherry on top, but that’s doing 90% of the heavy lifting in terms of their symptoms?
Dr Jennifer Gaudiani: The short answer is I don’t know. I will always admit I don’t know. But the slightly longer answer is it’s clear that some people really do get better on H blockers pretty much alone. There’s a lovely rheumatologic article that talks about a rheum group that was seeing patients for severe joint pain, and once they recognised – I think that group did use consensus 1 criteria; all of them had positive tryptases – but once they got them on H1/H2 blockers, they were like, “And then their joint pain went away. Oh my gosh, that’s amazing.”
I suspect that based on my referral population, they are just going to have a more severe version of mast cell, so I almost never see patients who are just on the little over-the-counters, but it can happen. And I’m sure it happens commonly, because there’s lots of people who don’t even know this or have a mild version of this and they could actually have a bit better health, but it’s not like it’s ever going to get awful.
01:15:56
And that reminds me that one of the downstream sequela that’s really interesting has to do with Ehlers–Danlos syndrome, or hypermobility. We know a lot more now; this is really coming to light, that hypermobile joints or hypermobile Ehlers–Danlos syndrome, which is a genetic connective tissue disorder – there’s a variety of types, it can show up in a variety of ways, but often also, in and of itself, as GI problems, joint pain problems, dislocation problems, etc.
What we believe is that – and I don’t know that we have any proof of this yet, but it makes sense – if you’ve been having meaningful release of inflammatory markers since you were 12 years old and you’re now 32 and your gut doesn’t work anymore and your joints keep dislocating and you have pain everywhere, it makes sense that those inflammatory markers nibbling away at your connective tissue all those years may have been responsible.
So even when I’ve got a patient with relatively mild mast cell, I might put them on something like quercetin or prescription cromolyn to keep their mast cells closed, because I don’t want them to have those markers nibbling away at their tissues and causing issues 10 or 20 years later. Just something to think about.
Chris Sandel: Is there quite a high overlap between Ehlers–Danlos and mast cell activation syndrome?
Dr Jennifer Gaudiani: Massive. Ehlers–Danlos, PoTS, MCAS, dysautonomia, all of those things are really tightly grouped.
01:17:42
Chris Sandel: One of the things I didn’t ask at the beginning, in terms of autoimmune conditions – do we think about this as an autoimmune condition in terms of MCAS? Or it’s not an autoimmune condition?
Dr Jennifer Gaudiani: I don’t really think it is an autoimmune condition in the sense that the body hasn’t mistakenly begun to attack itself. This is more the body is malfunctioning as a result of genetically primed mast cells that now have had environmental exposures that cause them to be too fragile, essentially. So I don’t think of it as AI (that’s autoimmune, not artificial intelligence).
Interestingly, when people have active mast cell, they can have mild false positives of typically checked antibodies, like the antinuclear antibody, or ANA. It actually doesn’t mean they have underlying autoimmunity, but that’s tempting to say because you’re like, “Ooh, that lab is abnormal.” But actually, when you treat the mast cell, those can go away.
Similarly, there’s a stool test called a calprotectin test. It’s often used to look at the degree of inflammation in the gut of people with inflammatory bowel disease. But I’ve had patients before who have really bad GI problems, and as we wait for a colonoscopy to get done, I check a faecal calprotectin test and it’s off the charts high. But even before they get to that long-awaited colonoscopy – which is still worth checking – you’ve got their mast cell under control, and the calprotectin is normal now. Just really, really interesting signs that we can measure as proxies of body influence.
Chris Sandel: Do you think there is also an overlap with someone who has autoimmune disease and then also someone who has MCAS? So it’s not just “We’re getting a false positive here” – just because of how the immune system starts to get impacted or some dysregulation in the immune system, it can go in both of these different directions?
Dr Jennifer Gaudiani: I would imagine so, but I don’t have hard data to say that’s the case. And that just may be one of my gaps in knowledge base that I will continue to advance.
Chris Sandel: Cool. In a lot of ways I don’t think it matters so much. A lot of it is just labelling. But I guess it just adds to our understanding of how things are working and why this is happening, etc.
Dr Jennifer Gaudiani: It does, absolutely. And there are certain conditions that I’m not at all an expert in, but that I know can sustain the activity of mast cell when everything in terms of trigger avoidance and medications and bucket management we’re doing properly. For instance, some people with chronic tick-borne infections will not get better from their mast cell and will continue to feel crappy until that’s been addressed as well. I am not remotely an expert in that, but I know it to be the case.
So these are interesting adjacent but related topics that people might be like, “Oh, wait, no, I did have asbestosis or Lyme disease or whatever” – and that’s a complicated, complicated topic – “but that does make sense, maybe, that my mast cell is still uncontrolled.”
01:21:04
I think this brings us to nutritional considerations, and I want to go very lightly on these but say a few important things.
I absolutely never recommend newly diagnosed patients with MCAS go on a website and find out what are the ‘high histamine’ foods. I do not recommend it, one, because every food has the potential in our gut to trigger some histamine, and turns out we need food, so don’t be tempted to do that. Second, we’ve talked a number of times about how many mediators there are. So even if you have a low histamine-triggering food, nonetheless you may be releasing all the other mediators. So it’s a losing game to try to be like “Low histamine will fix this.”
That said, if you yourself find that every time you eat an avocado, you feel like shit, take some time away from avocadoes. That’s okay. That’s not “take time away from all other fats.” That’s not “take time away from all other whatever foods you might be eating.” But if you’re like, “Yeah, every time I eat an avocado, I feel like shit” – okay. So don’t go on the sites. It’s going to make the eating disorder sane. All of a sudden it’ll be like, “Permission to restrict at this level? Yes please, that sounds amazing. Oh, it’s because of my mast cell.” No. Nope, nope, nope, nope, nope.
And I don’t recommend getting skin testing, either, for this stuff, because again, something you’re reacting to this week, you won’t next week. So don’t go down that. This is not a permanent allergy necessarily.
We talked a little bit about gluten. We talked a little bit about food dyes. That matters. There’s one really odd one, but it does make a difference and some people would never think of it: freshly cooked food is usually better tolerated than leftovers. Something about the way that the food hangs out tends to be more triggering of mast cell reactions. I’ve got patients who will go to the meat store and be like, “Hey, what’s your most fresh cut of meat?” They’ll take it home, they’ll deep-freeze portions of it raw immediately, they’ll cook up what they’re going to have that night, eat it, and let their family eat the leftovers, but not have them themselves. Even that can be a really interesting, helpful reminder as people are working on that.
I think those would be the only ones I would really share, because otherwise it’s just very individual. But it’s unquestionable that eating disorder behaviours will worsen mast cell because they are a stress on the body, and they’re a stress on the mind.
01:23:45
Chris Sandel: How does someone go about “What are the things that are triggering me?” Because there’s going to be the very obvious things where “Every time I have that, 20 minutes later it’s really obvious that didn’t agree with me.” Where we’re getting into maybe the next level down or the level down after that, what is the way that you’re recommending someone do this? Is it that they’re keeping a food diary? Is it that sometimes they’re having these foods and then another week they’re having these other foods? What is the method?
Dr Jennifer Gaudiani: I think that’s TBD. I think there’s a consortium of eating disorder dietitians in this country who are thinking about getting together and sharing the best of mast cell wisdom as they all learn and start to see patients and get expertise in it, so I think we can expect there’s going to be a boom in dietitians who have a lot of best practices. Right now, it’s ‘art of’ medicine or ‘art of’ dietetics. It’s not ‘science of’.
On the whole, if somebody is really, really nutritionally compromised, regardless of body weight, and they’re like, “I think I react to everything. I feel terrible”, that might be a circumstance in which the physician or dietitian is like, “All right, here’s an option for elemental shakes. If you’ll drink them and you get your nourishment back up on them for two weeks, then we can start adding things back in and see how you go while we’ve got you on medications.” That’s an extreme version.
Usually I like to use those elemental shakes as a calorie booster. If people who’ve gotten really limited in what they feel they can tolerate, either because of underlying anorexia or ARFID, are just having a hard time doing increased portions of those things, then you might say, “For your snacks, let’s do elemental shakes that we know you’re going to tolerate” so there’s no excuse of like “I don’t want my tummy to hurt”, but you need the calories. So I like them more for snacks than I like them for full meal plans.
I think beyond that, a food diary is challenging. I don’t want to trigger eating disorders. For those that feels good in, okay. For a lot of people, though, “Please, not again. I don’t want to do that ever again.” So you just say, “Look, let’s just work on this slowly together. I know you want to feel better so badly, and I want you to. This is going to be a long-term run for the both of us. Let’s start slowly. Are there ones you think probably don’t agree with you? We can cut those out first and see how you feel for two weeks.”
What’s really important is that for somebody to leave something out of their diet, they should really know that they always get the symptom when they get it – that is, when they’re in flare – and that they really don’t get the symptom when they don’t get it. Because I don’t want people going dairy-free if they’re like, “I went dairy-free, sometimes I tolerated it, sometimes I didn’t, but I still have all of those tummy aches.” Like, no, then I want you to have dairy. If it’s not clear that that’s a problem, the least restrictive meal plan is always the best one.
Chris Sandel: And I would also add if you’re going to be removing something, we need to be bringing something in of equal amounts, whether that be it’s roughly the same amount of calories or it’s roughly the same kind of thing. So “I’ve removed avocadoes; I’m going to up my olive oil content” or “I’m going to up my butter” or that it’s not “Wow, my fat intake’s really dropped through the floor because I’ve tried to pull this thing out.”
Dr Jennifer Gaudiani: That’s exactly right. When folks can have access to a great dietitian who knows about this, that is always the best.
Chris Sandel: When I’m thinking of recovery, I definitely think about it at different stages. Different things are important at different stages. I’m wondering, with MCAS, could it be that maybe some of the food pieces we leave a little later? Even if they’re causing some problems, but we know that’s just a little more complicated, and for you to not have air fresheners in your house, that’s not causing any concern.
Dr Jennifer Gaudiani: That’s exactly right. It’s an ongoing, open, respectful dialogue between patient and provider about, what is their unique harm-benefit profile for any given intervention?
Chris Sandel: Is there anything we haven’t gone through that you think would be useful on this topic? It feels like we’ve definitely covered a lot, but what have we not covered? Because I know how ignorant I am on this, and that thing of “I don’t know what I don’t know”, so there’s obviously going to be questions that I haven’t asked you because I didn’t even know to. What would you like to add that I haven’t asked about?
Dr Jennifer Gaudiani: You’ve done great. I think we’ve really got the ‘essentials plus’ covered, which is probably as much as people can bear to hear anyway at one given go. Because some of this is going to be a little bit mind-blowing for people. They’re going to be like, “Oh my God” and even have a grief reaction, like “I’m 45 years old and I definitely have this, and I’m so sad and mad that nobody ever identified this in me before.” This is a lot to take in.
01:28:55
I would lovingly suggest to those listening to this, this has been a lot to hear, and I would encourage them to go fill their buckets in ways that are uniquely good to them. Go get a snack. I sometimes say after going through this in an initial consultation with a patient, it’s a little bit like you’ve met a Dementor from Harry Potter. Go eat a chocolate frog. You need to go take care of yourself in ways that soothe, because this is a lot of information.
I think that people who want to learn more can go on my website. I will have, attached to this show notes, the MCAS questionnaire and the screener. People really can use the questionnaire to follow their own response to treatment over time, because it’s human to forget how much you’ve suffered in the past. I’ve got a number of patients – in fact, I would almost say the majority of my patients, after I start them on mast cell meds, somewhere between two and six months later, they’re like, “Dr G, I don’t know if I ever had those symptoms. I think maybe I need to stop meds and just see how I feel because I think I might be better.” I’m like, “Okay, it is your body.” And 100% of the time, they’re like, “Whew, no, no, no, I need those medications.”
So following one’s own symptoms quarterly, perhaps, using the questionnaire might be beneficial to be like, “Oh yeah, I actually haven’t had that in a long time. That means that it is worthy for me to continue to take these meds or do what I’m doing.” But on the whole, I would just say to listeners, be gentle with yourselves. Recognise and process through what it may have meant to have been missed or harmed for a long time with this. Recognise that it may be hard to hope. A lot of people who’ve experienced symptoms like this and negative workups and being dismissed by physicians have a hard time feeling hope, and I get that. That may take some processing as well.
But go slowly, be gentle, and my hope is that as more and more people know about this, health really does improve.
Chris Sandel: Definitely. I always send people to you when this makes sense or I’m like “I think this is what’s going on”, but a lot of people just aren’t based in the US, so when people contact you, do you have a list of other providers? I know you’re going to different events and networking connected to this. You talked about wanting to get a network together of RDs that understand this stuff. So is there some referral list that you have for people who aren’t based in the US or can’t see you?
Dr Jennifer Gaudiani: That’s a really, really good question. Generally, one can just do an internet search on MCAS providers ‘in my area’, ‘in my state’. And generally if people want to be doing this and they’re good at it, they’ll put it on their website. So it’s findable.
Some of the most wonderful MCAS providers with whom I do share patients to get a second opinion, to see what I’m missing, they may have waitlists that are incredibly long, months and months. That’s just rough. I think probably – I don’t yet have a provider list for MCAS RDs, because that is new as of last week that we’re starting to think about that. I’m going to be sending you information about it, clearly. But I think increasingly, the RDs as well will put something on their website like, “Look, I can do some essentials around mast cell. I’m not an expert yet, but I am willing to see someone who feels that this is an issue and support them until they can find a physician who can help them, too.”
So I think it’s going to be a slow process, and I don’t yet have a referral guide, but my hope is that with high-quality materials and word-of-mouth and podcasts like this, we’re going to start to really move.
01:32:46
Chris Sandel: Nice. The final question is, what other resources would you recommend? As I said, your blog is the first place I send people. I know in that blog post, you had recommended a book by Dr Lawerence Afrin, Never Bet Against Occam. I read the book; it’s a hard, hard read. To try and trudge my way through that was tough. I will put my hands up and say I think I understood about 30% of it, if that, because it is written very much with doctors in mind. It’s not an easy read. It could do with an edit. As fantastic as he is and very much gets it, it’s not a book for the lay public.
So is there anything else that you would recommend in terms of ‘this is a great book, this is a great documentary, this is a great thing to go to’?
Dr Jennifer Gaudiani: You’re right. Larry Afrin is amazing, he’s an incredible guy, and it’s a big read. I have heard patients say that they like the book The Trifecta Passport. I have not read it myself yet, but it’s about mast cell, Ehlers–Danlos, and PoTS. So that might be helpful, but again, I have not read it yet. But there is a documentary that some of the MCAS docs are doing that will eventually be released, so stay tuned. When that actually releases, I will make sure to let you know so you can post it on the show notes.
We’re in the nascence. We’re in the early stages. We’re in the wild west of this. So as really good things come online, great. I am just about to embark on the writing of Sick Enough 2, the second edition, which I feel excited about. A little bit overwhelmed by. But I will definitely be buffing up my chapter about mast cell now with everything that I’ve learned in the six years since I wrote the first edition. So that may be a mini resource as well.
Chris Sandel: Awesome. I will put whatever of those things can go in the show notes, I’ll put in the show notes. Where can people find you if they want to find out more about you and the clinic and the work that you do?
Dr Jennifer Gaudiani: Thank you. Our website is www.gaudianiclinic.com. I myself no longer see new patients, but my brilliant, fabulous partners do, and we love taking care of patients with mast cell. While we are a clinic for eating disorders, it is relatively rare that someone has mast cell without some eating issues, so we’re sensitive to the fact that people might be like, “I don’t have anorexia nervosa, but I do struggle with food and I struggle with all of this stuff that sounds like mast cell to me.” That is very much a patient we’d be interested in trying to help. And usually we have very low wait times, so that is good for the patient experience.
Chris Sandel: Perfect. I will put all of that in the show notes. Thank you so much for coming on, for giving us all of this incredible information and your time. This is something I’ve wanted to know more about for a long time, and I’ve picked up little snippets here and there. But this was just such a practical episode with so much really relevant information, and I look forward to hearing more about this. And whatever you’re doing with the RDs, keep me in the loop. I want to be able to help people more with this. I think this is something that is going on to a degree that people are not aware of, and it needs to become a much more common part of eating disorder treatment.
Dr Jennifer Gaudiani: Amazing. Chris, thank you for this and thank you for everything that you do. It is such a joy to have spent time with you.
Chris Sandel: Awesome. Thank you.
So that was my conversation with Dr G. As I said at the beginning, I really found this to be an incredible conversation. I learnt a ton from this. I know personally this is going to be an episode that I will come back to again and again, and the resources that Dr G is providing to go along with this episode I know will be really helpful. You can go and get access to that at www.seven-health.com/306.
As I mentioned at the top, I’m currently taking on clients. If you are living with an eating disorder and this is something that’s been going on even a very short time or a very long time or anything in between, and you’re at a place where “I don’t want to be living with this anywhere. I want to reach a place of full recovery and I want to do the things to get to that place”, then I would love to help you. You just need to send an email to info@seven-health.com and put ‘Coaching’ in the subject line, and then I can get the details over to you with that.
So that is it for this week’s episode. I will be back with another show next week. Until then, take care of yourself, and I will see you soon.
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