Chronic-Symptoms-Secretly-Caused-by-MCAS-POTS-and-Histamine-Intolerance-Michelle-Shapiro
If you've ever felt dismissed by medical professionals or if you've struggled with confusing symptoms like dizziness, racing heart, or fatigue without clear answers, this conversation is for you.
Histamine is one of,200 plus chemical messengers that come out of mass cells.
In this episode of the Dr.
Gabrielle Lion Show, I interview Michelle Shapiro, registered dietician.
clients who eat tomatoes and citrus fruits and fermented foods.
If you went to a gut health doctor, these would be the healthiest foods on the list.
They would say, "You have to eat these foods." And they would be the exact foods that would sicken those with histamine issues.
We're tackling a widely misunderstood and illdefined health issue.
histamine and its related conditions like mass cell activation syndrome, postural orthostatic tacocardia or POTS and she shares her personal and professional journey navigating these challenging conditions.
It's impossible to believe that something that's healthy for someone can create severe symptoms.
It's not logical almost, right? Why would someone drinking lemon water make them violently ill for a week? It almost it's like defies our understanding of the human body almost because it acts in this very odd way basically.
We'll explore why traditional medicine often misses the mark on diagnosing and treating them and discuss how these conditions intersect.
We break down practical strategies to reclaim your health, calm your nervous system and build resilience.
Michelle Shapiro, registered dietician, also one of my dearest friends.
welcome to the show.
I'm already emotional.
Thank you so much for having me here.
This is so happy to be here.
Unbelievable.
It's unbelievable.
One of the reasons why I wanted to have you on is typically when we see a patient in the practice that has all these strange symptoms like dizziness, heart rate variability, uh they are reacting to foods, to sun, to things that we couldn't even imagine.
It seems as if mass cell activation syndrome is something that plays a role and it being related to nutrition.
You certainly are an expert and have seen many patients with mass cell activation syndrome.
But what is it? Yeah.
So we'll first define what mass cells are.
I think that's really important.
So much of the conversation online right now is about histamines.
So we're going to use that word a lot.
But I think to even define histamines, we have to talk about where they come from.
Mass cells are a part of our immune system.
They're a type of white blood cell.
And I really think of them as being the guards to our body.
So what their job is is to assess for threat and then send messengers out to the rest of our body instructing them on what do we do in this situation.
And I really think of mass cells as being this not only um they not only help with the healing in times of a threat, but they are always anticipating threats as well.
So what happens is something will attach to the outside of a mass cell and then the inside there's these sacks where they will release these granules that have these chemical messengers in them.
One of them is histamine.
So this is why this histamine conversation becomes so important.
Mass cell activation syndrome is when those mass cells are constantly activated and releasing these chemical messengers.
And it's really important to state histamine is one of,200 plus chemical messengers that come out of mass cells.
So wow.
and we really have kind of honed in on histamines.
Just out of curiosity, why do you think that is? I think histamines create the most um emergency like symptoms and I think that's why we focus so much on them because histamines are the most I guess the loudest you could say of a lot of them.
There's elastes, tryases, cytoines.
There's so many different compounds that come out of our mass cells, but the ones that we can actually see and feel come from histamines usually.
For anyone who's interested in research, I wanted to pull um some of the new existing data and this is a 2024 paper.
It's the world journal of clinical pediatrics and it's mass cell activation an up-to-date review of the literature and again it talks about mass cells as this again what you had said a type of white blood cell that is involved in the immune system and they create a common list of symptoms flushing hypotension itchiness swollen tongue headache vomiting diarrhea and it seems seems as if there's a lot of outstanding questions.
Uh, I'd love for you to talk about a little bit about what these symptoms are.
Is it system dependent? And how is that going to happen? I can't believe how excited I am to talk about this.
I'm like, this is so great.
Thank you for asking me that question.
So, when we think of histamines, we often think of medications like antihistamines.
Think of this as a benadryil deficiency, right? It's like you just need a Zerek, right? Which in some cases, by the way, you do need a Zerek.
We can talk about the medication component of it.
Um, but histamines are so much more than just these compounds that cause mucus and coughing and this type of um classic cold symptomology.
So mass cells are in our connective tissue and our connective tissue lines every organ in our body, our joints, our bones.
Um really anywhere where there they say like there's a dark hollow space in your body, there are mass cells.
So that means that the symptoms from histamines can come from anywhere in your body.
So it's really weird because if people can get tachi cardia or low or high blood pressure from histamines, they would actually think maybe I'll go to a cardiologist.
Um but in reality because the symptoms are coming from this type of chemical compound, it's really hard to trace kind of their place of origin.
And other symptoms that people experience with histamine issues are flushing and those classic allergy symptoms that we think of cold symptoms.
But then also people can experience extreme urgency in their digestive system, extreme urgency in their urinary tract, feeling like their bladder is constantly full and irritated, feeling um extreme anxiety because one of the roles of histamine is to keep us awake and alert.
Uh so people have insomnia, anxiety that's really prevalent, depression or depressive symptoms.
Um because we can't say there's only one root cause of any uh of these conditions or syndromes.
Histamine issues can cause joint pain.
Um and our perception of pain can be increased from them as well.
And then a lot just again a lot of digestive issues.
People are seeing uh rapid diarrhea also constipation which is weird.
It depends on the person.
Um and a lot of nervous system involvement too.
And that's really tricky because it's almost a catch-all phrase.
You're not feeling well.
It could be mass cell activation syndrome, which is not common.
I think that this is a case.
When I say it's not common, it's not very common in the literature.
It's also not common from a diagnosis perspective.
And it reminds me of when mold and environmental toxins were never thought of.
I remember when I was living in New York City.
I mean, we've known each other now.
It's going to be almost a decade.
It'll be going on a decade.
And when I was living in New York City, I'm gonna start crying right now.
So sweet.
Um before both babies and uh before Shane, literally before Shane.
Aren't you so glad we don't have to listen to uh Bud's class 234 like we were on repeat last night? But anyway, 10 p.m.
the when I was living in New New York City, I got really sick living in my apartment.
I went to multiple doctors and I had already been a physician, right? So, I'd been a physician seeing patients and it turned out I went to probably five different doctors and I didn't get any answers.
I couldn't explain word finding difficulties, vision changes, and just terrible fatigue.
I mean, I could barely get out of bed.
Sorry.
And it ended up being mold.
I was exposed to stockbatricus in the apartment that I was living in.
But at the time, people would think that was crazy.
Now, everybody is talking about mold.
It's really become more of a prevalent disease just just like lime.
Absolutely.
Mass cell activation, I think, is the next thing.
Yeah.
And mold, by the way, can be a very like clear root cause to mass cell activation syndrome, by the way, because of this inflammatory cascade that happens as a result.
Because anything that triggers your immune system to be in that constant state of threat or activation or needing to detox all the time, anything like that, if you don't have proper drainage, can create this immune system need to constantly put out these messengers and constantly um fight.
That is very interesting because it gives us a root cause approach and that is something that you really focus a lot on.
Yeah.
How does someone know what would be the process of trying to figure out if someone had massel activation syndrome and I'm thinking of one patient I have and he would go into his house and immediately he would get a histamine reaction.
Yeah.
So first of all you can have that histamine reaction to these environmental toxicants.
So when I think of we'll talk about the diagnostic piece but also when I think of this histamine problem usually it's a composite of different uh different factors.
So histamine issues are not just from one thing.
So it's not that you ate a tomato and then you were sick after.
I think of histamines much like we think of autoimmunity kind of like a bucket theory.
So you could have a little bit of environmental toxicant that puts your immune system on guard, a little bit of mold, and then you have a stressful conversation with a family member, and then you eat a bunch of tomatoes, and then you drink a little bit of alcohol, and then that turns into this, and then and then you watch Navy Seal documentaries at 900 p.m., which is way past my bedtime with the children.
Um, yeah, exactly.
But it's it's a composite of these things that then puts your body into this state of activation.
So, it really is not just usually one event.
However, I will say a lot of times if there is one event, it is usually from a very strong detox protocol.
So, I often see clients coming to me after they've been to functional medicine doctors on these incredible parasite cleanses, mold detoxes.
They're correct, but their immune system is too reactive basically.
And what I'm hearing you say is you're describing what people would probably pin on a Herk reaction.
Exa, that is exactly right.
And so usually if you're working with a fabulous functional medicine doctor, they'll titrate down or they'll say, "We kind of have to push through, right? We have to push through this herks." The problem is with histamine issues is you have a new problem.
If you have if you have mass activation syndrome while you're going through a mold detox, you now have to deal with the mass cell activation syndrome because your immune system in that state of constant searching and fighting is going to create new problems for you.
That just sounds really challenging.
Yeah.
When someone is thinking, okay, I might have mass cell activation, how would they then go through kind of a a diagnosis criteria or um is there a criteria for diagnosis? Sure.
Yeah.
So, this can be done in an immunologist's office.
This can be done in a primary care office, a functional medicine doctor's office.
So, you can measure the actual mediators.
You can measure serum, tripase, serum, histamine in in your actual like at a lab with a lab test.
You can also measure through a urine test.
The reason why these can be very limiting is because histamines aren't don't live in our blood for very long.
And if you're not in an active flare, you might not be able to see um what is circulating basically.
And and and I so it's really important that if people are using that mode of diagnosis that they actually go during a flare.
I would say it's really important and you have to be off of antihistamines to be tested for it.
um a kind of more accurate measurement and another way that we can diagnose uh not myself but that doctors can diagnose is through biopsy.
So you can get a skin biopsy or if you happen to be going in for an endoscopy or colonoscopy you can you can biopsy the cells and see mass cell activity through that as well.
The standard laboratory diagnostic markers of MCCAST according to this up-to-date review for MCCAST is serum tripase with a normal level defined between 0 and It also exactly what you said studies have shown that the sample should be taken within 1 to four hours of the beginning of symptoms and that that basil level should be evaluated in advance during a symptom-free period at least 24 to 48 hours after complete recovery.
As one could imagine, this is not easy to do and some studies suggest that even a normal tripase level that that does not diagnostically rule out MCCAS.
you had mentioned and I'll just this is for the providers listening and and if you are someone who is testing in your urine or urinary metabolites that other mediators such as histamine prostaglandins lucatryines other urinary metabolites of histamines it says that they are not as well known in terms of diagnostic criteria.
Yep.
What else would be a way to tell? Is this a diagnosis of exclusion? It can be.
And while of course as a dietitian I'm not diagnosing anything, um I will say this.
Um I tell the story about a mutual friend of ours, Olivia Amatrono, uh who you introduced us.
That's right.
I'm responsible for the friendship.
You are very responsible and I'm giving you full accountability and responsibility.
Um, Olivia wrote an article a long time about what her number one travel tips were and what she has to pack with her when she's traveling.
And in that article, she said, "I always bring benadryil with me because you never know when you'll need it." And I said, "You'll only need benadryil if you have a histamine issue.
So that's a good way to know.
If you take Claritin or you took a Zerek or you took a Pepsid and you felt immeasurably better, that would tell you, you know what, maybe this is this is something and maybe this is a direction to look in because for people who do not have histamine issues, you would not feel better taking those medications.
So sometimes there's a little bit of a trial and error as well.
I would also say that after working with probably at this point in my practice a thousand clients between myself and my practitioners, there's very clear patterns that we can see when it comes to histamine issues.
So clients who eat tomatoes and citrus fruits and fermented foods, if you went to a gut health doctor, these would be the healthiest foods on the list.
They would say, "You have to eat these foods." And they would be the exact foods that would sicken those with histamine issues.
So when I see clients come in with a list and I say, "What foods do you react to?" And they say, "Vine, tomatoes, spinach, avocado." That leads me in a direction of, "Okay, this is not a regular gut issue like leaky gut or something." They're not reacting to fiber particles.
they're reacting to one specific component of the food.
So, it's it is a little bit of um by exclusion and also by pattern recognition, I would say.
And there are some really um easy patterns to see.
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What? That made me think about that list.
It also made me think about small intestinal bacteria overgrowth.
Yes.
Which is exactly what it sounds like.
Small intestinal bacteria overgrowth.
There is a disproportionate amount of bacteria that would be less than ideal for the gut.
People get a lot of bloating.
When you see a patient with histamine, do we call it histamine intolerance? How do we differentiate between histamine intolerance and massel activation syndrome? Yeah, so massel activation syndrome will probably involve those other mediators.
Histamine intolerance can be you have actually a normal amount of histamine circulating.
You just don't feel well when you're having that amount.
So it's an intolerance to existing histamine that you're experiencing.
Um pretty hard diagnostically to differentiate.
However, if someone has histamine intolerance, I'm always wondering if there's mass cell involvement as well.
Um, and there is mass cell involvement because that's where histamine is released from.
Would it be safe to say that if somebody has a histamine reaction repeatedly that they should be checked for massel activation syndrome? Absolutely.
Is there a list of symptoms a validated list of symptoms that they would say okay you go to your cardiologist because they see tacoc cardia or POTS which I'd love for you to talk a little bit about is there a checklist to determine cuz I I haven't seen one I have never seen a validated checklist although again I think immunologists probably have access to something that's pretty again this clear pattern recognition.
Um it is not there would not be a diagnosis based on that list that I'm aware of.
I could be wrong by the way and I'm open to No, I I haven't seen it but you for example in low testosterone there are questionnaires for sleep apnea.
There are questionnaires for narcolepsy for all of these many of challenges physical challenges.
There seems to be a a questionnaire.
this would make sense that guys if no one has done this we should go do it go get on this right away because it would be really really helpful.
Yes.
So this this part of the conversation I think is the most important part because the philosophical question we have is whose responsibility is it to treat MCCAST and what can each person do? What is the role of each provider? What's the scope? Because this information around MCCAST is exploding very recently.
The first practice paper I believe was only in 2017 maybe 2019.
So um it's all very new and we've also seen an explosion of MCCAST with long co.
So the question is where's each of our roles I think and it's really really important because if someone again if someone has a pounding heart when they stand up and their heart rate's jumping up severe tacky cardio which is a frightening experience you think you're having a heart attack.
You don't know what's going on.
You're so dizzy you can't move.
People can't walk when that reaction is happening.
Where would you go Gabrielle? You'd go to your the ER.
You go to a cardiologist's office, but there's no cardiologist who's pulling out a list of histamine intolerance checklist.
When someone's coming in, they're going to do an EKG.
They're going to do what they need to do to make sure that their heart as a muscle is functioning.
The issue is that histamines, one of their main functions is to um cause vasoddilation, which we'll go into more deeply, but it's not that the heart itself is not functioning.
It's that the brain is signaling and the mass cells, the immune system is signaling for the body to operate in a different way.
So, it's really challenging for doctors because that's not in their inclination and it shouldn't be.
They want to make sure that muscle is working, that the organ is working.
So, it's really challenging when clients go to the ER because you can get any emergency sign you can think of, respiratory rate changes, fevers, um obviously any uh visible signs and things like that, heart rate.
So, the question is what is each of our role I think because it's really tricky and it it really conceals itself as other conditions as well.
What would the diet look like? Is it fair to say that there is a diet to help modify these symptoms in the short term? And then I'm curious as to treatments in the long term.
Absolutely.
Yeah.
So, let's say someone let's say we have identified a root cause for MCCAST.
Let's say we know someone's living in a moldy home.
Let's say actually someone has SIBO because SIBO is actually one of the syndromes or conditions that we say travels with MCCAST.
So they they often have um overlapping ed like symptomology as well.
So if someone has these symptoms in the short term or we've even identified the root cause, you still have to treat the symptoms first.
This is very different than other conditions because if you know that mold is an issue, usually you treat the mold, right? If you know that parasites are an issue, you treat parasites because histamines are so um react our immune cells or man cells are so reactive to any type of detoxification including a vitamin C supplement.
I had a oneweek reaction with fevers because I got a vitamin C IV.
Wow.
This I this really brings me back to remember u my New York practice.
Of course, we had a patient that reacted to vitamin C.
This was before I was even thinking about mass cell activation syndrome and we were thinking to ourselves how we don't believe this.
We do not believe that she is reacting to vitamin C.
Tell me more.
Yeah.
So it's really funny because those patients are my only clients.
So that's I only see the people who have those reactions and those reactions have exploded since co by the way.
So it's impossible to believe that something that's healthy for someone can create severe symptoms.
It's not logical almost right.
Why would someone drinking lemon water make them violently ill for a week? It almost it's like defies our understanding of the human body almost because it acts in this very odd way basically.
So vitamin C is powerfully supportive for our immune system.
In mass cell activation syndrome your immune system is not hypoactive and it's not autoimmune, it's hyperactive.
So it's constantly turned on essentially.
So anything that enhances an immune response can also enhance a mass cell response as well.
The other issue is if you are not draining or detoxing properly, you can have recirculation of toxins.
What what does that mean? Does that mean liver removal? Yes.
Does that mean going to the bathroom, gutt removal, liver removal? So any if any step in the detox and drainage process is inhibited, you can have recirculation of toxins basically.
So in SIBO is a great example.
you have this bacterial overgrowth and your body is like let me mount an immune response to help you to get rid of this and to move this through but you don't you you cannot handle the added immune and detoxification response.
So it is a body that is in a state of turned on too much.
So anything that enhances the detox response that could help you you actually can't do which is really really frustrating in treatment.
That would be really again very challenging.
Here I'm just going to read this.
This is the relationship between SIBO and MCCAST is as follows.
SIBO and this is for my science nerds in there.
Dad, I hope you're listening.
SIBO causes the activation of mass cells and increase in Tlymphosytes.
Tlymphosytes in turn secrete microparticles that again activate mass cells.
Activated mass cells and Tlymphosytes release cytoines.
This increases intestinal permeability and leads to this vicious cycle.
friends.
Why this is so important is because when you hear mass cell activation or when you hear SIBO, you must have a mechanism of action.
Absolutely.
When we don't have mechanism of action and the way that I would think about this is red meat causes cancer, colon cancer or red meat causes cancer.
What is the mechanism of action? This has a clear mechanism of action.
How do we begin treatment? Because obviously people would think, oh well, I'm going to take vitamin C.
I'm not feeling well.
But before, actually before we go to treatment, give me some other items that people would take.
You said vinegar, avocado, any of the foods that seem to exacerbate small intestinal bacteria overgrowth.
I did a a episode with Ken Brown, Dr.
Ken Brown.
He was amazing.
If you guys want to learn more about SIBO, we should link to that episode here.
Vitamin C.
What else? Yeah.
So, from a histamine food perspective and the original question, yeah, absolutely.
The original question you had was like, what is the diet the deal with the diet piece of it and we will talk about that of course.
So, the foods that are high in histamines or can cause the body to release histamines are vinegar, citrus fruits, spinach, avocado, tomatoes, especially like aged um foods.
Unfortunately, pickles for me, it's a major loss.
Um it's actually the only high histamine food I can't eat.
Chocolate, everyone's mad at me for saying that one.
Alcohol, anything that's aged, the the food itself can build histamines over time, basically because histadine gets converted to histamine in the aging process.
fermented foods, those gut healthy foods, miso, natto, um fermented vegetables, like these foods that again are so objectively healthy, they have a high histamine content or they cause the body to release histamines.
Um bananas are another one.
Um spinach.
So would these reactions happen immediately? Depends.
It's a great question.
Yeah.
Or is it over time? For example, the person who eats a ton of bananas one day can't tolerate bananas.
or I used to eat um you know like Matt my producer chugging vinegar he maybe could do it and then all of a sudden he can't do it anymore.
Absolutely.
Yeah.
So it depends on where you are in that bucket theory right.
Have you had a lot of other environmental toxicants? Stress.
Have you been exercising too hard? And exercise is something we have to talk about because sad here.
It's not sad because exercise is essential for POTS especially and MCCAST, but everything's about titration and everything's about creating safety in the body first and you have to do things in a certain order.
So the answer is this.
Does a low histamine diet treat the root cause of MCCAST? A little bit, but not totally.
The way that it does a little bit is because unfortunately our body has this very odd mechanism where the more histamines that are present in serum the more body the more the body creates histamines which I'm like don't do that we have enough clearly.
So the problem is if you eat high histamine foods it enhances this cycle that continues as well and can cause drastic symptoms.
And when I say drastic symptoms I mean violent digestive issues for days at a time.
Could be all the way up to vomiting.
It could be migraines.
I mean these are really really intense symptoms.
Not just that little rash that people think of which is also a common histamine symptom of course as well but these symptoms are so drastic and it is hard because you can have a reaction within minutes or the reaction can be delayed like 12 hours later.
That was my that was going to be my next question.
Does someone have an immediate reaction? And if we're thinking about diet obviously you're removing those things.
Is that the first step? Yes.
So I would say in any protocol, so this is the same thing with supplements and when we were talking about supplements, vitamin C, vitamin B, especially glutathione, anything that's enhancing that detoxification or immune system response.
Um, but really people with mass cell activation syndromes, I think of our bodies as these highly sensitive bodies as bodies that are on guard.
So anything that's perceived as a change to the system um can be really challenging.
So, it's it's those supplements that enhance the immune response, mitochondrial response or detoxification or anything that's new to your body, unfortunately.
And it really depends on the state because I can eat if I took a flight and my my mass cells are already irritated, I might not be able to tolerate them.
So, it is really challenging to kind of chase.
But in the beginning, you have to stabilize two things of any mass cell journey.
You have to stabilize your histamines and you must stabilize your nervous system because our nervous system and our immune system are intricately connected.
And in mass cell activation syndrome, there is no way that your mass cells can be calm if your nervous system is hyperactive because that's the number one signal for our mass cells to to activate and they literally communicate with each other.
Mass cells are also considered neurotransmitters and are released by our hypothalamus as well.
Hm.
With histamine stabilization and nervous system stabilization.
Can you give me a sample type protocol? And we've actually worked on a few quite a few patients together.
And there's this one patient that I'm thinking about and this was uh she had long co and we should talk about longcoid longcoid ACE receptors and this uh MCAST connection.
We started her on pepsid.
We gave her a handful of items and it seemed to really improve her symptoms.
So, let's start with that.
Yeah.
And I I I'm going to actually mention a case study with a different client and why Pepsid even came up to me and why I even started thinking about Pepsid.
Um I had a client who was on eight psychiatric medications.
Uh actually she had a fantastic psychiatrist and it was well for insomnia.
She had untreatable insomnia.
She was sleeping 1 to two hours a night.
Then maybe like the third night she would get like five or six hours.
But it led to the point where she had like paranoia and hallucinations.
Her insomnia was so severe.
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And at some point, I started noticing she had other histamine reactions.
So I said why don't we try Pepsid which is actually an antihistamine.
The reason I even thought of Pepsi is because I had seen a study.
Um they studied 16 people out of who were inatient in a hospital and they found that 14 out of 16 of them had an intervention of 80 milligrams of fotodine which is Pepsid.
And I was so shocked because I was like what the heck does Pepsid have to do with longcoid symptoms? Why would that make a difference? And it's actually because Pepsid is an antihistamine, which most people don't know.
And I think this is a little speculatory, but I think because it works on the gut, I notice it helps with a lot of neurological symptoms for people um and nervous like uh numbness, tingling, that zingy feeling because I think it's the Vegas nerve impact.
Um so it works even better than some of those H1 receptor medications.
So she took Pepsid and it's been 5 years.
She's never had trouble sleeping since.
Um obviously she worked on the rest of her medication protocol with her doctor.
dietitians actually can recommend over-the-c counter medications and um we worked on that together and she is sleep she has not said the word sleep to me in five years.
So weird.
Yeah, that's wild.
Someone listening to this and they wanted to take matters into their own hands.
Obviously we always suggest we don't give medical advice here but this is for educational purposes only.
You start a lot of your patients on Pepsid that have this.
Do you take them off of supplementation? And I know that you use a lot we both use a lot of electrolytes.
Yes, absolutely.
Tell me a little more and why what it is that we are using.
So the first round for us is always those two things.
Histamines, nervous system.
The deal with histamines and the MCAST is that you have to kind of radically drop those histamines down because if you're in that symptomatic state, your nervous system is going to be so active and it becomes this cyclical um state of existence.
And unfortunately for people, again, Gabrielle, we're really talking about people who are mostly many of them are unable to work because if they walk into an office where they recently used bleach, they're having a potentially asthmatic reaction to it, right? They're having um such a severe reaction to environmental triggers or having going out to dinner with friends and having something that's super healthy and ending up again violently ill.
So in the beginning I will often even as a dietitian recommend overthe-counter medications a combination of H1 receptor medications like Claritin Allegra or Zerek and then probably a combination of Pepsid as well.
The the question that's going to come up in your amazing medical community is well Pepsid lowers stomach acid and low stomach acid is a huge problem Michelle.
So in this population it's interesting because they actually may have higher stomach acid because stomach acid and um mass cells releasing histamine it's a direct relationship higher the stomach acid higher the histamine release higher the histamine release higher the stomach acid this all happens on the parietal cells H2 receptors um are very again there's this cycle that happens so what you have to do in the beginning is whether it's overthe-counter medications or supplements like we use pearlla extract pea queretin Um, again, we can't use vitamin C in the beginning usually, but we will take people off of the supplements they're on most likely because we don't know what they're reacting to, and we will just focus on supplements that'll help the nervous system, mindset work that helps the nervous system, and then also anything related to histamines to bring down that response.
When you focus on their diet, is it mostly proteins? What kind of foods do you typically have them eat? Yeah, fresh protein because leftover foods can also again the older a food is uh the the the more it can develop that histamine response.
So fresh meats, many vegetables outside of the ones I named are fantastic.
Fruits usually are fine outside of those citrus um and raspberries unfortunately and strawberries.
Um but there's and tomatoes as we talked about, but there's basically most whole foods.
Most carb foods are low in histamines as well.
So you can eat a whole foods diet.
It's just being selective with those foods.
So, we will go on a probably um an 8 to research about low oxalate diets as well.
I haven't seen as much positive response.
It's really hard because people can still have histamine issues while they're on the low histamine diet because I don't know, they have uh an abusive partner and that's the reason that their mass cells are activated.
So, it's hard to know the exact reason, but you can see some really tremendous symptom improvement from that low histamine diet.
And it's still so essential to eat those whole foods during the time.
And very possible, right? 8 to so 8 to 12 weeks on a low histamine diet, whole foods, taking some form of a typically an H2 blocker and H1, a combination of H1, H2.
Yeah, H1 H2 blocker.
That's one side of the equation.
Mhm.
Is there something to directly work on the nervous system? Would that be meditation? Are there other obviously you're probably they're not seeing doctors and going on SSRIs? How are we stabilizing the nervous system? By the way, that's a really good point, too, because a lot of medications can cause drastic reactions.
So, it's really hard for people to find out which medications help or hurt as well.
So, when it comes to the nervous system and mass cells, I have this visual for mass cells.
I almost, and I feel really silly saying it here, and I hope Shane doesn't um think this is extra silly, but I kind of think of mass cells as like the guards on the watchtowwer of a battle that just happened.
They're kind of like looking to make sure they're witnessing the battle and then they're deploying resource resources after to help clean up the debris and also to prevent that from happening again.
So the problem is that people with extremely uncomfortable and frightening symptoms get really scared when those symptoms happen.
And this is what keeps mass cell activation going.
It's really challenging for me to look at someone who's been sick with painful, frightening symptoms that no doctor has been able to help them with and say, "I need you to be calm when these symptoms come up and I need you to find a way to be non-reactive to these symptoms." So there are actually brain retraining programs that help retrain our lybic system which is our hypothalamus, hippocampus and amydala which will process our um threat response, memory and basically again is deeply integrated with um this mass cell response.
So it's really interesting because these brain retraining programs are one of the top ways to support MCCast the Gupta program DNRs primal trust and it starts in the brain.
So we often think oh maybe mass cell stabilizing medications like promolin sodium ketoyphen um but in reality starting in the brain is the most important thing at home I'm not asking people to meditate and do things like that even though it's essential because the symptoms are so loud that sitting in them can be really challenging.
So, what I invite people to do is to just ask themselves questions and get really curious about their symptoms and just ask yourself, I have people just tap their heart and say, "What do I need? What do I need in this moment?" And really, just at home, again, this is temporary.
I know how horrible this is.
I've personally experienced these symptoms to an extreme degree.
So, I understand.
Um, but anything we can do to become non-reactive really, really helps in the long-term treatment of these conditions.
And our mutual client, I had that.
It's a hard conversation to have because I'm like, it's not your fault that your nervous system is so reactive, but we have to find a way to feel safe again.
And what is fascinating about it is this is not something where individuals are usually very reactive and they're having these experiences in their body that are real and they are coming from white blood cells and and other portions of the body that are really pushing up anxiety.
I was reading one thing about migraines.
They believe that mass cell activation seems to play a significant role in the pathophysiology of migraines.
I'm I'm bursting at the seams to talk about this.
Yes.
Go burst.
Don't one one thing about one of the functions of histamines is to cause vasoddilation.
Okay.
The widening of our blood vessels.
And this is you have such an intelligent audience.
They're going to be like Michelle, please don't explain vasoddilation to me.
So, I want someone to think of a scenario where they've had this experience where they're in the shower and suddenly they feel really dizzy when they're in a hot shower and they look down, they see their legs are red and their heart rate is pounding.
Why does this happen? Right? So, what's happening in that situation is that heat and histamines both cause vasoddilation.
So, if our blood vessels are wide open, we're standing in the shower, it's steamy, our body's standing up straight, gravity plus vasoddilation will pull blood down and blood will pull down.
So blood pooling is a big component of both mass cell activation syndrome and POTS postural orthostatic ticardia syndrome.
So when the blood pools in our feet and legs you see it on the surface that's the the opening of those blood vessels.
You see all that redness and then what's happening is your heart and your brain don't have blood flow going to them.
Now of course they have some blood flow going to them but there's limited.
So what happens is your body starts pounding your heart to get the blood flow back up to your heart and your brain.
The dizziness comes because you're not having blood flow to your brain and your heart starts to pound because it's not getting that blood flow.
So in a histamine response again, what you can see is blood that's pooling in your extremities dropping down because you're constantly having that vasoddilation.
All right, this is my big moment.
Okay, migraine medications are what? They're vasoc constrictors, right? We think of eedran migraine that has caffeine in it.
We think of what helps people with migraines.
There's this very popular trend that's happening online where it's like have a diet coke and French fries.
I'm like don't.
I'm like there's other ways.
There's other ways.
Um we think of electrolytes that help people with migraines.
We think of cold compresses that help you with migraines.
All of these have vasoc constrictive properties.
Migraines we've known for a long time are vasoddilation issues.
And histamines are potent vasoddilators.
So I believe that the root cause of many people's migraines.
There's many root causes of migraines can be histamine issues because of this vasoddilative feature which is um I think one of the roles of histamine that creates the most havoc in the body symptom-wise.
I have had many patients explain that scenario to me.
Doc, I was in the shower and I don't know what happened but I started getting red and lightaded.
How do we treat them in that moment? Is that a pre-treatment with H1 and H2 or is there a different way? What what are your thoughts on that? It's the it's the exact right question.
So, this scenario is very common in people with this um syndrome postural orthot orthostatic tachicardia syndrome which we did not really dive into and I'd love for you to talk about.
That'll take us into that because this is one way where those two are very related.
And I have a joke about POTS.
The way that we treat POTS in conventional medicine is we kind of create a go-gurt tube through your body.
So, we compress your stomach.
We wear an abdominal binder.
You squeeze it.
It helps the blood flow go up.
We wear compression socks.
We kind of squeeze your body like a go-gurt tube and just bring the blood flow back up.
Right? And you know this from all of your extensive years in practice and training, but um if someone has like low, you know, blood pressure, you might have them put their legs up on the wall.
Basically, the goal is to get blood flowing back up.
Now, POTS we think of as maybe that's a cardiac condition, right? It has to do with how fast your heart rate is jumping when you make a postural change.
When in reality, POTS is a form of disordia.
Wait a second.
It's a nervous system disorder.
It's a dysfunction of your autonomic nervous system.
So, that means that treating POTS is not about treating your heart.
In most cases, there's different types of POTS.
Three.
One is hypoalmic POTS which is that you just have low blood volume.
When you don't have enough blood volume, you don't have that pump and then your again your heart will start pounding faster.
We often think of POTS um we're like why are people's part hearts pounding so much? They get put on propanol, metiprolol like anything that beta blockers to help bring the heart rate down and stabilize it.
Um in the case of hypoalmic pots the treatment is also to have not only this compression but to have 10 grams of sodium per day additional.
So we drink element right element that's one gram of sodium.
We're talking about 10 element packets and again it's to enhance vasoc constriction and increase that blood volume essentially and to help um so that there is that blood flow and that blood volume will help to enhance the blood flow.
The second type of POTS is hyperadinuric POTS which is you're having this hyperadrenaline response.
These people do not have low blood volume necessarily.
They're having an adrenaline response that is causing their heart rate to go really high.
Very related to mass cell both of them again in this feature of mass cell activation syndrome enhancing that vasoddilation causing leakier blood vessels.
POTS and MCCAST are connected right there and it's really important.
And then um idiopathic POTS, which is there's actually some sort of blood vessel damage that's causing it.
How long does it take to treat POTS? Would you treat POTS or MCAST first? Because they're almost as if so POTS is this downstream effect of MCCAST.
However, it seems that what I'm hearing you say is for the treatment of MCCAST, number one, regardless of what is causing it, you have to stabilize both histamine and nervous system.
But histamine is kind of a catch-all term for the multiple other responses.
It could be right.
It could be prostaglandins, it could be lucatryins, it could be it's inflammation, right? In some level, it's the immune system.
And then the also you need to block the histamine symptoms on some level because people are unable to work and live their lives.
Um it's it's really excruciating.
There was one study out of the University of College London that stated that those with long CO which if you ask me I think it's a composite of MCCAST and POTS in almost every single scenario um had worse quality of life and more fatigue than those with stage 4 cancer and stage because the symptoms are so drastic and so intense and no one knows how to help them essentially.
So I think that if you have a POTS issue, and I've I've never seen someone with POTS who doesn't have MCAST.
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But you said something Gabrielle that's going to be Dr.
Gabriel line that is going to be so profound for people.
You said pots is a downstream effect of MCCAST.
No one says that just so you know that's not common in the conversation.
I believe that to be true.
I have never seen a POTS client who doesn't have MCCAST.
So the question is how do we stabilize him histamines to stabilize symptoms? And then with POTS you must recondition.
You have to because it's blood flow, right? That's a huge piece of it and you have to you have to have a tremendous amount of electrolytes and you have to hydrate really really well.
That brings us to exercise.
How does that happen? How can we manage exercise dealing with POTS or MCCAST? And I've had patients with POTS who probably have MCCAST, but the major presenting symptom is this exercise intolerance and heart rate changes.
Yes.
And those symptoms I I don't think we can overstate how absolutely terrifying those symptoms are.
By the way, it's not just like, oh, my heart is fluttering.
You can't People feel like they can't see.
It's excruciatingly anxietyinducing and the anxiety around pots, especially hyperaginuric pots.
You have this it's like a I I can only describe it as a very full body anxiety where you feel like there's ants crawling under your skin and you're had it have I had people don't know your personal story.
You have had absolutely POTS MCCAST MCCAST hypermobility and long which we should talk about the connection between hypermobility and MCAST but after you finish telling us how we are going to exercise cuz this crew they want to train they want us and it's the most devastating for this crew because first of all being unable to exercise doesn't make exercise less healthy for us.
So, it's like we know the information.
You have you have told us this information yourself for you've devoted your life to telling us this information and it doesn't change the information.
It just means that we might have to build our tolerance to it.
We, you know, I've had so many clients, Gabrielle, where they're at the point where they can't walk 10 steps.
So, what do you have to do? What do they do when they walk 10 steps? They just feel out of breath or Yeah.
So, um so dizzy that they might actually faint.
Um some that POTS there's a huge fainting component to many.
Not every single person has that symptom.
Um their heart rate is is so rapid again that they could immediately have this like feeling when they stand up so dizzy the heart pounding so profound it just basically like pulls you back to sit down.
And those episodes from just standing up once can leave you with that anxiety and that adrenaline response for days.
So it really makes people feel so frightened.
And it's actually with mass activation syndrome, you can also have pretty profound exercise intolerance and they would actually get full body rashes and then what feels like a flu basically.
So the answer is how do we titrate it specifically? Something else that's very very important with POTS is something called upper cervical instability which happens in hypermobility that I know we're going to talk about.
Really with POTS, it's about protecting your neck because if there are if there's any instability in your neck, all the nerves that control your heart rate are in your neck, right? They're running down.
We we talk about the vagus nerve all the time in ways of digestion and ways of anxiety.
But think about the fact that the these nerves are going to control that heart response and it's a it's a nervous system condition.
It's a nerve condition, right? So, it's really important.
There's actually a type of exercise protocol called the Chop Lavine protocol.
It's a free PDF they have online.
Um, it was developed for people with POTS to increase their exercise tolerance.
All of the workouts are very specific to not be you're not doing standing up exercise to start with, right? You might be doing recumbent because you don't want that blood flow dropping down, not getting the blood flow back up to your heart.
And then also they're really mindful of neck as well.
Is there one modality of exercise? When I say one modality, is it easier to tolerate resistance type training than it would be walking or cardiovascular activity? It's an excellent question.
I think it depends on the person.
I think people can probably tolerate lowweight resistance training easier than cardiovascular to start with.
I it would make sense because again we share a few patients together and when those patients do a lot of walking with weights they they feel terrible and it's and these are regular exercisers.
Typically we have a handful of patients who have had long COVID and that seems to be their response if we don't titrate it really really slow.
How fast do you think and again I understand that this is individual.
How fast do you think someone could titrate up movement? It really depends on the person.
It depends on their exercise capacity before and it depends on how much can you control those histamines.
Honestly, what about the hypermobility part? You had mentioned earlier that there is um connective tissue potentially bone joint involvement in this.
Talk to me about that.
So our connective tissue lines all of our joints, bones, and organs in our body and our blood vessels most importantly too, which is what will come into play with how POTS and hypermobility are related.
Hypermobility as I'm talking about it is probably a collection of conditions that are connective tissue disorders called Ellers's Danlo syndrome, EDS.
I have HEDS, hyper mobile Eller's Danlo syndrome.
Ellers's Danlo syndrome.
Wait, did you just say you have? Yeah, I sure do.
I exactly I remember.
Do you remember when you called me and you were like, Gabrielle, you do you remember? You won't believe it.
Can you just share because this really plays into this Eller's Danlo? Absolutely.
And just share a little bit about what you were going through.
Yes, absolutely.
So, I had moved to I'm so so embarrassingly for me, I had moved to New Jersey from Manhattan, but I was right over the bridge, but I needed a car basically when I got there.
I had gone through a mold detox in my apartment in Manhattan.
I moved to New Jersey because I had such a severe and profound mold.
I mean, there was mold.
It was It was such a good apartment.
Otherwise, it was very hard.
You did not You did not want to leave.
How long were you there? I was there for 2 years.
You were there for 2 years.
So, I was not planning to leave.
And then I walked into my bedroom of that apartment and I saw my husband.
It was like the movie Interstellar.
Like, he was coughing up along and I'm like, "Are we in a dust storm in here?" I'm like, "We have to leave this apartment." Like, I know I have weird reactions.
And I was having symptoms that were again dizziness.
I was like, "Maybe this is a thyroid thing." I was like, "Oh, you know, I'm having gut conditions.
I'm going to get a GI map.
Let me see what's going on." Nothing was really showing up.
I was like, "Oh, now I know it's mold related." So, I went on a mold detox in that apartment was like the sickest I ever was in my life.
And I just I I mean, Herk's reaction, those symptoms where you feel like your body is going through such a you're in a flu state, dizziness, anxiety, insomnia.
So I left that apartment and when I moved I had to start driving and when I started driving I started getting a lot of dizziness when I was driving and I was like I thought these symptoms were gone.
I then had COVID again and then I went to a chiropractor and the chiropractor did an adjustment and he said oh my you know I've never felt a neck this tight in my life.
So I took this like metal tool and chiropractors who are listening are gonna be like I know the name of the tool and I don't.
I'm sorry.
dug into my neck, did not assess me for hypermobility, and basically on a very small level loosened the joints in my neck.
I walked out of there, and I don't I actually don't mean I walked I crawled out of that appointment, and I crawled directly to the ER.
Um, I could not stand up without my heart rate going up to 160.
I mean, I I was sitting it was the phone with my sister crawling on the cement in an urban place, crawling to the ER.
I said, "What just happened to me?" Um, I it took me a long time to understand how mass activation syndrome and because I kind of knew there was a histamine thing.
I kind of knew that something was going on, but to pull this all together.
Wait, it was this when you I think I would I I wanted you to come to something and you were going to come but you weren't sure because I have and then you were wearing a neck brace.
Was this during that time? Do you know that I would risk my life to do a talk with you by the way? So, this is the funniest thing you were doing.
We were It was for your book.
We did a Q&A for your book and you invited me and it was one of like the biggest like like the biggest joys of my life.
And I was like, "All right, Gabrielle, I cannot fly to come see you, but I will I will film in Manhattan.
You will film there.
I came in a neck brace.
My tolerance for even sitting up because my the hyper mobility situation was so rough.
And again, he had the chiropractor had loosened all the joints in my neck.
My nerves were so inflamed from that.
And your brain has to send the signal to your heart to pump.
That's what I think people don't understand about POTS.
It's not a heart condition.
It's a brain condition.
Your brain says, "Send blood flow here.
Activate this muscle.
Do this." In hypermobility, which is a connective tissue disorder, that relationship is not there.
And we also don't have the structural support because connective tissue holds us up and it gives that structural support.
So, if you don't have proper connective tissue development and someone goes like this with your neck, what's holding your neck up? So, I went to that I went to that Q&A with you and in between takes I would take off my neck brace.
I was literally I I we can show people the video.
I was like this.
I was like, don't tell me about Forever Strong.
I was like, and you were like, great job, but we didn't use it.
We did not end up using that.
You still did a great job.
Yeah.
But you didn't know you had Eller's downloads.
And I want to talk a little bit about it's a it's a group it's a genetic disorder and it's mixed connective tissue.
It is is it uncommon? I think there are degrees to it.
So it the amount of women who are hyper mobile but don't you can be hyper mobile and just have um basically like just different joints in your body are hyper mobile but not have Ellis Danlo.
The numbers are over 60% I believe of women are hyper mobile.
Hypermobility is not necessarily a connective tissue disorder.
The rates of hypermobility are very high though.
Um, and people also need to work out differently when they're hyper mobile, which many amazing chiropractors, personal trainers know.
And I actually have a a personal trainer who specifically works with hypermobility.
Shout out to Taylor Goldberg.
She's the best.
Um, and shout out to Taylor Goldberg.
You know, you've got uh Michelle Shapiro.
I said, Michelle, do you want to come train with us this morning? She goes, uh, no.
I am going to stay at the hotel gym and I'm going to lift my 15 pound weight.
Ex.
That's exactly right.
Um, yeah.
And Taylor tells me what to do.
She's one of the only people I let bully me besides you.
Taylor, you're fired.
But, uh, okay.
Well, I guess you also threatened me and said to go on the ice plunge.
I'm like, you got to give me a break.
I am really actually glad you brought that up.
I do want to talk about other modalities first.
So, I'm going to write this down.
Ice plunge.
Yes.
And and for Yes.
How can someone assess for Ellers's Danlos and what is the relationship between Eller's Danlos and the association with MCCAST? Yes.
So, Ellers's Danlo syndrome, there's 13 different types of EDS.
Hyper mobile EDS is one of them.
You there are genetic tests for almost every other type of EDS besides hyper mobile that's done through assessment basically.
Um, there's some genetic markers that lean towards it like Cole 5A1.
There's some that we know.
There's one type of Ellers Danlo syndrome that's really important for us to talk about because it requires additional testing.
Um, and that's vascular EDS, which means that again your blood vessels can become leaky.
And this is if someone has vascular EDS, they could die in pregnancy.
It's a very it's a profoundly important thing that we anyone who has Eller Stan syndrome gets an echo cardiogram not an EKG an echo cardiogram because you have to make sure um that there's not going to be you know even like a rupture um of those blood vessels.
So just understanding how important our connective tissue is.
Uh there's assessments that you can be done and also genetic uh diagnostic features uh for EDS as well.
So if our mass cells live in our connective tissue and you have taught us this more than anyone Dr.
Y is our connective tissue like our muscle is endocrine facing.
It's immune facing.
It doesn't just sit there.
And if we don't have the structural support from connective tissue and if there's connective tissue dysfunction and our mass cells live in our connective tissue, there's going to be communication errors that happen and that is going to activate mass cells.
And the same thing with POTS.
You have constant mass activation syndrome that can lead to leaky blood vessels as well with the constant inflammation and the vasoddilation pushing outwards and then you have this kind of cluster of what we call the triad which is symptoms from any direction.
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The biggest challenge is well, are you having a hyper mobile symptom day or are you having a mass cell symptom day? Because there's different symptoms for each one of these.
Um, so it can be challenging, but I know my client's body so well where I'm like, "All right, it's a hyper mobile day.
ice up.
And something I need to mention because it's your podcast of all people is that one of the most important things we can do as hyper mobile people is build muscle because we do not have the structural stability from our connective tissue.
Something's got to hold us together, right? muscle will put those bricks, those building blocks in your body to hold you together and get that proper blood flow because there's this severance of this brain blood flow connection that happens in hypermobility and you have to have muscle to reestablish it and to structurally hold you together.
It is the only like it is the most important thing we can do.
What I'm hearing you say is that muscle is the organ of longevity and the most important structure in our body.
I I really have to say it absolutely is and it's 100% the thing we can control.
It helps with POTS.
It helps with hypermobility and because it has this anti-inflammatory effect, it also helps with MCAST.
This makes me think about a sport injury for example.
You know, I I'm not sure the amount of mass cells that live in any portion of the tissue.
For example, in your connective tissue, your tendons, do they live in tendons and ligaments as well? Just connective tissue.
Just connective tissue.
If someone injures their connective tissue in some kind of sporting injury, would that cause a cascade of mass cell activation? 100%.
Absolutely.
Yes.
Especially because it's in your joints, too.
And there's, you know, there's kind of this like echo reaction that happens.
Our entire body is so intricately connected.
We like to think that if we have anxiety, it's in our head.
We like to think if we have an injury in our leg.
There's systemic communication between injury and also injury is going to stimulate your immune system as well.
So, absolutely the sauna and cold plunge.
I I've been trying to get you to do that.
I use those all the time.
the massel activation.
Obviously, there's different phenotypes for lack of a better word.
Whether you are massel activation with small intestinal bacteria overgrowth, whether you have pots and mass activation or you have eller stanlos and mass activation, are there adjunct therapies that are more beneficial for one group than the other? Yeah, absolutely.
Um, I think cold therapy in ways of cold compresses on your neck is really powerful for POTS again like vag nerve support.
So, we talked about step one and step two with MCCAST.
What do we do? Stabilize histamine, stabilize the nervous system.
Well, what's the rest, right? What do we get to what fun do we get to have after? Once you have your immune system and your nervous system stabilized, that's when you get to have fun because that's when you can say, "Let's go for a mold detox.
Let's use infrared sauna.
Let's That's how you're defining fun.
We we we can't.
Wait a second.
That's how you define fun.
Are you kidding me? I came here to visit your family.
I was thinking there was rocks and Yeah, exactly.
But for you, more intense exercise is fun.
And it's true because then you can start to dig at the root cause after.
So you can do all of those root cause things.
It just takes more time.
You have to stabilize first.
So infrared is tremendously supportive from a detoxification perspective, from a um nervous system perspective in, you know, innumerable ways that Dr.
Dr.
Alexis Cowen um has told us about so many times, but it really can be so helpful for those with MCCAST and it can be really soothing for people as well, but infrared is a huge bucket filler for MCCAST in the beginning.
So when you are still stabilizing histamines or stabilizing your nervous system, we cannot push detoxification and we cannot push um heat changes because much like exercise intolerance, heat intolerance and cold intolerance and temperature changes um can can trigger these these symptoms.
Okay, I cannot validate some of these items on here, but I want to talk about them.
Okay.
And that is a histamine estrogen connection.
Women with histamine issues from what I'm reading often feel sick days 6 to 11 days 19 to 21 rather than when they have menration itself.
Is this validated? Yes.
Okay.
Yes.
Yes.
Totally validated.
Histamine and estrogen have a direct relationship.
It's a well-known well-established relationship.
So, when you have clients coming to you, any of us have clients coming to us with um regular PMS symptoms, PMDD, there's a very targeted window that we assume that symptoms are going to happen.
They're going to happen the week before someone's period comes.
In those with histamine issues or POTS, their symptoms generally start about day seven of their cycle.
It could even be as early as day six and then up until ovulation.
So, when estrogen starts getting released, that's when the histamine reaction starts.
So, it's not even at the peak necessarily that people experience it, but on the way to ovulation and then there's a second estrogen spike in the middle of our ludial phase and people will notice around 19 to 21 another set of histamine symptoms.
This was one of the hardest things personally for me to figure out.
I was on Reddit like why feel sick when period end? Like what where are you getting that information? like to establish this connection and it's so exciting for me to talk about because just knowing information about histamines can be healing and that's not the same for leaky gut that's not the same for other conditions understanding okay I need to maybe slow it down in ways of like my vinegar intake during days you know 6 to 14 and just be mindful of that or I need to take my antihistamines on those days cuz you can then understand what is going on in your body imagine you just feel really weird weird every day seven of your cycle like no everyone's like what is this? So it's a clear and established connection and um it gives people a lot of relief to understand why their body might be operating on a different system.
Another thing that I'm reading here is that increase in estrogen increases histamine release.
What about those on for example an estrogen patch? I have, but in our practice at Strong Medical, I have very rarely seen patients go on an estrogen patch and say they feel worse.
Maybe they don't notice it.
Is there is this true? Is this something that you see, but they're also on progesterone? We never give unopposed estrogen.
And maybe it's the progesterone that helps regulate it.
The ratio is important as well of estrogen to progesterone.
So I would say in all of my clients who are on HRT and have MCCAST, they do notice a reaction with estrogen.
They also notice a reaction with progesterone.
Even though progesterone is actually massel stabilizing, um it can create issues because progesterone causes laxity in our joints.
So that can cause hyper mobile symptoms for people.
So it's like a catch 22 a little bit.
However, if someone needs hormone replacement therapy, we have to find a way to reduce the symptomology to to have them tolerate the medication that's essential for them.
Do you find similar symptoms? For example, someone who is using an estrogen patch and the subsequent histamine release.
Yes, I do.
What is it? So, it's the same reaction.
Whatever their I I say mass cells show you the symptom you want the least.
For me, I hate insomnia.
I hate dizziness.
So that's I my my nervous system gets reactive, right? Versus someone else, they hate having cold symptoms or a rash that scares them.
You know, it's like histamines will get your attention in the way they need to.
So depending on what your symptoms are, digestive, nervous system, urinary, um, rashes or otherwise, that's what will show up for you and your flare state.
Also, reflux is not just a stomach issue.
Absolutely.
Often a histamine response.
Absolutely.
Would that happen in general or just after being provoked, meaning after they ingest something? Uh, so it can be that you just have this hyperactivation and this the parietal cells releasing too much stomach acid and being signaled again because the H2 receptor.
So it can be that someone with mass cell activation syndrome just has a lot of acid reflux.
And I this is a really little hack is that baking soda both stabilizes mass cells and helps with acid reflux.
So, it's like a really eighth of a teaspoon in water.
Like little hack that people can do, especially if they don't tolerate Pepsid.
Um, but I don't use Pepsid for acid reflux, by the way.
I use it for histamine issues, which is really funny because that's how people usually think.
And you use baking soda for acid reflux.
Yeah, exactly.
It's like the It's like totally flipped.
Exactly.
Um, but and we will say it tastes disgusting.
It's horrible.
It's salty.
It's not like salty in a fun element way.
It's like a salty in a bad way.
Tastes like armpits or something.
Not that I taste armpits, but but it I will say and there's also tri salts um which can be really helpful for people as well.
But a lot of reflux what I'm focusing on is how do we soothe? So it might be slippery al marshmallow root um herbs that can be supportive but a lot of the reducing the inflammatory histamine response is also just about reducing that inflammation not only reducing the acid output.
Are there supplements that could be beneficial? meaning fish oil or other items that seem to taper it that we haven't really talked about for MCCAST specifically.
Yeah.
Yeah.
I think rveratrol is incredible.
Queretin, pilla extract, pea.
Um I so I think most people with histamine issues have a major omega-3 issue, but most do not tolerate fish oil.
Still too reactive.
Um they take it and then they might get itchy or whatever their histamine reaction is.
And also um people with because in Ellers's Danlo syndrome, you're going to have junctions and joints and flaps that are going to move slower.
Your digestive tract is going to move slower.
Um things are looser along the way.
You're going to have a different slew of digestive issues.
So a lot of people who take fish oil may experience bile reflux and reflux um as it's harder to digest things.
Really interestingly, a feature of digestion that actually links POTS and hypermobility together is that people feel really dizzy after they eat when they have POTS.
Um, and this because blood pools in your digestion away from your brain.
So, I will have people literally wear a little abdominal binder, like an ace bandage around their waist when they're eating and the dizziness goes away.
That is I mean I I don't think I've ever heard that before, but it makes sense.
Is an individual hopeful for a full recovery or is this something that they live with always? If you are not hopeful for a full recovery, you're not going to recover in my opinion.
So, absolutely.
I would say that like for myself, for instance, I took an antihistamine cuz I've got on an airplane to come down here.
Woohoo.
Um, other than that, I I go months without taking them.
I can eat every food except for pickles.
I can exercise in my way.
Dr.
Gabrielle Lion.
Exactly.
But um absolutely and the I think the language around all of this is that you can never these are s massivation syndrome and pots are syndromes right they are not intended to necessarily be lifelong conditions.
Is it something that people may have to manage? Yes.
Do I have hope for almost every single person that they can live a life without having to think about it um and kind of live a life that's really custom and cater to them? Absolutely.
And because our mass cells and our nervous system are so related and because POTS is a condition of our nervous system, you must think like that.
That is the number one difference between those who heal and those who don't is they believe they can heal.
I couldn't agree more.
I typically, you know, when we see patients, it's if those patients believe and it does sound um I don't want to say woo woo, but there corny or something like that, but there is something in the inherent belief of a person who gets better, you're right, versus a patient who doesn't.
This is the what makes these conditions so unique is that they are nervous system related disorders.
So it's it is directly responsible for the symptoms you have.
Now how do I look at someone and say you have to find a way to not react to these symptoms because I'd say half of the symptoms we see are from the actual reaction itself and then half are from how our mental state reacts to those like you must find a way.
So story about myself is that after that chiropractic incident um I the insomnia was so profound I could not move my head an inch and I more importantly could not sit up.
So, I was still seeing clients and I would prop myself up against the wall and I'm like, "Do you want to see me like this or you want to wait 3 weeks?" And they're like, "No, no, I'll take you like this.
It's fine." I'm like, "I'm just going to keep seeing I'm I'm going to a talk in the city." Oh my god.
The Uber to that talk.
I I wore a neck brace, a back brace.
I held on basically any movement was triggering my heart rate to go up really high.
Um, and is that what someone with POTS would experience? Yes.
Someone with POTS and uh upper cervical instability combined, basically.
How long did it take you to get diagnosed? So with um I I ran a genetic test for hyper mobile ellers syndrome and so by yourself you can do yeah that you can order them yourself online but I had I had an ND and MD review them.
So POTS but I'm what I guess what I'm getting at is that's very forward thinking where I had to figure a lot of it out myself.
It's it's hard.
It's true.
So MCCAST my serum histamine serum tripase were exceptionally high.
So that and that was um with a functional medicine doctor and that was that was like four years ago.
So that was the first hint and they ran that and that really helped me to understand the connection.
Um POTS and POTS when I was in the ER and the doctor was didn't even have to do a tilt table test.
He was like stand up again, sit down again and and I said I have no I'm just telling you my heart rate is normally very low.
My blood pressure is normally very low and I'm telling you that because this is abnormal and that's really important when people go because often doctors will say you have high blood pressure.
That's what's going on here.
You have high heart rate.
And I was like I need you to know this is atypical.
But the doctor was like, "Stand up, sit down." And I and he was like, "Okay, you need to look into POTS and you need to see someone for POTS." Um, and you went to the cardiologist.
Um, I went to an interventional cardiologist who is someone who can diagnose POTS.
Did the tilt table test and got that diagnosis.
And then I I ran the genetic testing and had it reviewed by an ND for um, Ellers Danlo syndrome.
And all along the way was trying to figure this all out because I'm telling you, it was me, a neck brace, and Reddit.
And I was like, why leave chiropractor can't walk? Like what h I was like, did he did he sever something? Like what h it was so frightening.
The anxiety was so excruciating.
The symptoms were so intense all the time.
And I just I remember I had to literally It's so embarrassing.
I don't care.
But I had it's like I don't I I just you know you know me I'll literally say anything but I would I had to lift myself up by my arms and push myself onto a computer chair to go to the bathroom because I if I put my feet on the ground my heart rate was 160 and that I'm like I don't want to do a dizzy and fainting and all of this.
So I'm like I would just lift myself up as long as my feet didn't touch the ground, wheel myself to the bathroom.
And I remember there was one time I was in my neck brace looking in the mirror, just made it to the bathroom, and I just said, "You know what, Michelle? I just I don't think you're going to make it out of this." And then some other part of me was like, "You better never say that again." Because if your nervous system and your limbic system believe that you're not going to heal, you truly, this is one of the only conditions where it is tangible that you won't heal.
So you have to find that, I don't know, that dog in you.
You got to find that Dr.
Gabrielle line in you.
got to find that Shane in you and you have to find a way to believe you can heal and you know I had a very serious conversation with a client the other day who um she's bedbound with symptoms and um she was talking about her health history.
She was talking about the different co- infections she had and I said I love you so much and I just heard you say I felt good for a couple days but it always happens like that and it's not going to happen again.
And I said you can't even say that out loud.
I said your body is listening to you.
Don't even think it.
Don't even say it.
It's that precious and that important.
The mindset, the resilience piece, which you you've changed my life in so many ways in that department, too.
I mean, everyone's lives, but personally, too.
Like, you have to find that dog in you.
I don't know what to say.
You have to find it.
Well, Michelle Shapiro, I'm so grateful that you came from is it New Jersey now? It's so hurtful.
Queens, New York City.
I I just to know if we're calling it if we're here in New York, but you are a wealth of information and just again for those of you guys who don't know Michelle Shapiro, watch for her.
She is a superstar.
I have been telling her this and telling everybody I know for a really long time and I believe that you are the person to watch.
Thank you.
You You are the person I watch and that we all watch.
Thank you.
I love you so much.
You're really good at taking compliments, but that's okay.
Michelle Shapiro, thank you again for really getting into the dark and dirty and shedding some light on MCCAST POTS Eller Stanlos.
You know, you've been through a lot and I would say that those individuals are the best providers.
Absolutely.
Yeah.
The word you used is right, shedding the light on it because the light, the information is the tool here.
The knowledge is the tool and the resilience is the tool.
I could talk about anti-histamines, the lowhistamine diet, but you have to shine the light on yourself.
And I'm telling anyone who's listening who's dealing with I don't care how far those symptoms are.
You there's always a way back from them.
I have more hope for this community than I've ever had in my entire life.
Well said.
Well said, my friend.
I love you so much.
Thank you.
Thanks for tuning in to another episode of the Dr.
Gabrielle Lion Show.
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