Aidan:
Hello and welcome to the Ideal Nutrition podcast. My name is Aidan Muir and I’m here with my co-host, Leah Higl and this is episode 186, where we’re going to be talking about nutrition for hyper-mobility, MCAS and POTS. Hyper-mobility is self-explanatory. MCAS stands for Mast Cell Activation Syndrome and POTS stands for Postural Orthostatic Tachycardia Syndrome. So we’re just gonna use acronyms.
Leah:
Yeah, the acronyms are much easier.
Aidan:
Going forward. The reason we’re talking about this today is largely because honestly, Leah is seeing a bunch of people in this space and it’s, a lot of this stuff is pretty complex and I don’t think there’s a lot of content in this space. So I think it makes sense for us to be talking about this. I’ve obviously done a professional job in terms of preparing for this. I’m a dietician, I’m familiar with a lot of this stuff and I’ve obviously prepared for this podcast specifically, but Leah is the expert on this space. So we’ll be going through a bunch of stuff.
Leah:
Sweet, so I thought we would start with at least a brief explanation of these conditions. So starting with hyper-mobility, so that refers to an unusually high range of motion in one or more joints. So some individuals may experience no issues and kind of live life pretty normally, whilst others can have a range of symptoms like pain, instability, and frequent injury. It’s essentially a group of disorders that affects collagen production.
So it does exist on a spectrum in regards to severity and also has a lot of different like subcategories when it comes to hypermobility. But one of the more common ones that you might hear about is EDS or Elos-Danlos syndrome. So that is a subcategory of hypermobility where we see things like skin hyper-extensibility, fragile tissues and joint issues, particularly in relation to instability.
So definitely like frequent injury and things like that there just due to the overextension of joints and what not. But we do have again, subtypes of EDS as well. So it’s like, it’s kind of a deep rabbit hole when you start going down this space because there’s like subtypes of subtypes of subtypes, but you can have hyper-mobile EDS, but there is also vascular EDS and what we call classical EDS. And again, that is just like one subcategory of hyper-mobility. it’s like it is quite extensive and people experience hyper-mobility in all different kinds of ways.
So we will cover some general dietary recommendations or considerations for hyper-mobility and EDS in general, but the majority of the clients that I see are more complex in that they have other co-occurring conditions that are related to EDS or hyper-mobility, but are more co-occurring rather than being just the hyper-mobile aspect. So the first one is MCAS and that is mast cell activation syndrome. And this is a condition where the certain cells in your body called mast cells release too much histamine inappropriately. So mast cells are a part of our immune system and their job is to help protect you from infections or allergens.
But in MCAS, these cells are essentially over-active and very sensitive. So they release histamine when they shouldn’t, which can lead up to an overload of histamine in the body and then that can create a myriad of symptoms. So things that I typically see in practice would be your gut symptoms. So things like diarrhoea, constipation, belching, bloating, nausea, vomiting, general discomfort, pain, depending on the person, they can have a mix of those things, a few of those things, et cetera.
But it’s also a lot of non-gut related symptoms typically as well that comes from this histamine overload So skin issues like itchy skin hives rashes bone and muscle pain, headaches and migraines are really common. Even swallowing problems are quite common anaphylaxis, fatigue and brain fog, when it’s not well managed as well as things like even a nasal itching and congestion so it can affect the sinuses. It’s basically affecting the whole body.
So not just digestively, but it can be a myriad of different kinds of symptoms in different subcategories. But it can also, something that I see in my clients a lot is like worsening of neurodivergence symptoms, maybe in relation to ADHD, ASD and things like that, because there is a major crossover between neurodivergence, hyper-mobility and MCAS. But yeah, that’s essentially what MCAS is and everything that come along with that. And then we do have POTS. So I have a lot of clients that have hyper-mobility triad or triad where they have all three of these conditions.
And POTS is a form of dysautonomia and it’s a disorder that affects the automatic nervous system, which controls certain involuntary bodily functions. So your heart rate, blood pressure, digestion and temperature regulation. So in POTS, the main struggle is that we can’t regulate blood flow and blood pressure as well. So when we move from seated or lying positions to standing, there can be this rapid increase in heart rate due to a drop in blood pressure, which can have a variety of symptoms there. We see like dizziness, nausea that can come alongside kind of experiencing that drop in blood pressure and dizziness and a range of other symptoms.
But I think the biggest thing I like to highlight here is that the POTS and MCAS, when they’re co-occurring, do have like a bi-directional impact on one another. So when the POTS isn’t well managed, it can make the MCAS worse and vice versa. So when looking at a client that has all three of these conditions, you can kind of see how it gets very complex and there are like a lot of moving parts.
Aidan:
That’s a good summary. And also I’ve definitely seen over these many cases where somebody’s got a diagnosis of just one of these things. And then when speaking with them, it’s clear that they do have multiple. Going through nutrition, we’re to go through each of them individually. So I’m just going to start with hyper-mobility and I’m going to talk about hyper-mobility as if it was presenting without the other two things going on. So we can just cover it individually and then we can probably circle back and be like, well, if you had all of these, it’d be a combination of stuff. So talking through that.
Obvious starting point, as it is in many cases, is an overall well-balanced diet, focusing on anti-inflammatory style diet to a degree as well. We would also be focusing on certain key nutrients that are helpful for collagen synthesis, making sure we’ve got an adequate amount of all of this, so protein, zinc, copper, vitamin C, and then also doing similar for bone and joint health, so things like calcium, vitamin D, omega-3, and magnesium. A common one that comes up that people would definitely be interested in is collagen supplements but so far they don’t seem to be that helpful from the research we have. doesn’t seem to be that promising or anything like that, but definitely ensuring that there’s an adequate protein intake definitely makes sense, which will also provide enough amino acids in general to help with collagen synthesis.
A major challenge that’s super common is chronic constipation. So there was a recent study that found that 73% of patients with Ehlers-Danlos syndrome or somewhere on the hyper-mobility spectrum basically had constipation versus 16% of the control group. That is a big difference. We’ve put that study in the show notes. So if anyone did want to look at it, you can go see stuff like that. But the underlying cause of constipation is it involves a lot of things. It’s pretty multifactorial. So just listing some of them, there’s some disorders of the gut, brain access, delayed motility, small intestinal bacterial overgrowth, pelvic floor issues, and also a reduction in sensitivity in that area of the gut as well.
In terms of what you do about this though, obviously it’s individualised, but it’s basically the same approaches that we’ll be doing for other people with constipation. We’ve previously, because this would be a podcast by itself, we’ve previously recorded content on constipation that you could look at. I’ve also written a blog post that’s basically nutrition tips for constipation that actually work. If you Google that, you can find that. So it’s the same kind of thing, but as you go back to the prevalence, it’s just so much higher. So it makes way more sense to be on top of this just in general, if you do have hyper-mobility.
Leah:
Yeah, and I think that in general is a really good place to start for most people that are presenting a little bit more complex with things like MCAS and POTS as well as the hyper-mobility. It’s like, ideally we’re starting with a base of like a well-balanced anti-inflammatory style diet that is not creating deficiencies that can make the condition worse. So like that’s always gonna be the baseline. But when we have MCAS also layered on top, it can become a lot more complicated. when yeah when someone presents with MCAS it’s not, I don’t jump to a low histamine diet straight off the bat but it’s typically going to be part of the process.
So a low histamine diet can help people with MCAS because it reduces the amount of histamine coming from food. So if you have your mast cells that are producing all this histamine plus you are having more histamine from food then you can get to that point of histamine overload a lot more quickly where part of the management strategy could be reducing the amount of dietary histamine someone has to keep them under in like a tolerable level of bodily histamine. So there are three major groups that I look at of foods when it comes to following a low histamine diet. So obviously there are generally high histamine foods.
So this would include things like your wheat and gluten-based foods, dairy, particularly your aged and fermented stuff. So things like yogurt and like cheeses are big ones. Things like pickled and fermented veg, fermented soy products. So things like tofu, not tofu, tempeh and soy sauce. Soy sauce is a big one. And then also certain fruit and veg. So you can find full like high histamine versus low histamine food lists online. I tend to point to the SIGHI list, which is the Swiss interest group in histamine intolerance. And that one’s a, because you can find a lot of conflicting information online, but that’s the one I tend to point to. So then we’re avoiding high histamine foods or at least reducing them.
But there are also two other groups of foods that can be reduced to have a similar outcome. The first one is histamine liberators. So these are foods that are not necessarily high in histamine on their own, but they can create more histamine production in the body through mast cell activation. So this is things like alcohol, buckwheat, avo, tomato, kiwi, citrus, chocolate and cocoa, carob, as well as things like yeast, cashews and walnuts. Again, it’s like a bit of an extensive list, but that’s kind of some of the key ones.
And then we’ve also got DAO inhibitors. So that’s diamine oxidase, and that is a particular enzyme that helps break down histamine in the body. And certain foods can actually inhibit the action of that enzyme. So again, this is stuff like alcohol, certain kinds of teas, particularly like your black tea, chocolate, energy drinks, and some medications. So when we are looking at a low histamine diet, we are going to likely reduce a bit of all of these, although depending on the severity of symptoms and someone’s personal tolerance, like we play around with how much we actually have to reduce this by.
Typically, it’s like we’re pulling it all the way back and then adding stuff to kind of see when they start to tip over into having symptoms again. And then we have a better idea of where tolerance is. Although that tolerance can definitely ebb and flow depending on other factors. So there are so many things that impact MCAS outside of diet that there are a lot of moving parts. So in terms of like, I guess creating that histamine load, the dietary aspect is just one thing that we can control. I am always talking about animal proteins on a low histamine diet.
So if you’re someone who eats animal proteins, it’s really best to have them as fresh as possible. When you buy meat, freeze it right away. As soon as it’s defrosted, you wanna cook it and eat it, not storing your leftovers in the fridge for too long, because essentially the longer that those animal products sit around, the higher the histamine content. So we’re going to go like as fresh as possible in order to reduce that histamine load. But like I said, levels of restriction do depend on your overall histamine tolerance. So it’s gonna be so individualised. And then outside of having a lower histamine diet, you could also consider things like taking DAO enzymes. So you can actually purchase those to have alongside high histamine foods to help with the breakdown.
One that I recommend is intoleran DAO enzymes. That’s something I use with my clients a lot. You can use antihistamines. So I tend to recommend a mix of H1 and H2 antihistamines, although I’m not gonna go too deeply into that because it’s something that if this is an issue for you, you are better off speaking to someone for individualised advice, ideally a medical professional as well as things like mast cell stabilisers. So ideally I’m always pushing for my clients to get a diagnosis, which it can be hard to get a diagnosis for MCAS, but you can usually have, I guess, more medical management that takes the pressure off the dietary lifestyle stuff.
Aidan:
So obviously I’ve been reading heaps about this, particularly over the last month because of this podcast. But one of the questions I’ve got, because I don’t really work that much in this space is what have you found in terms of like, moves the needle the most for clients. I know it’s individualised, but moves the needle the most and or is the easy wins. Like I can say stuff like the DAO enzymes probably like a really easy win or something like that but like, in terms of working with people, what have you kind of seen?
Leah:
Yeah, honestly, it tend to go for like the lowest hanging fruit and the easiest thing. So DAO enzymes is something that I’ll usually pop right in there as well as trialing some antihistamines. And then, from a low histamine perspective, we’ll even just start with trialing a gluten-free, dairy-free diet, just to simplify the process and then continue to take things out from there if needed.
Aidan:
Yeah, for sure. Cause even though the low histamine diet looks-
Leah:
It’s complicated. Yeah. So any way that I can simplify that for my clients, like ideal. So usually it’s like, go gluten-free, dairy-free, we’re mindful of those animal proteins being fresh and maybe reducing like your tomato intake or soy sauce, like specific foods that might be like overemphasised in the diet. That’s where I tend to start.
Aidan:
Yeah, cool. Well, I’m going to talk about POTS now. So we’re going talk about POTS in the context of somebody who also has MCAS as well. And that requires a bit of holistic approach that factors in both the overactive mast cells and also blood flow regulation issues from POTS. Some starting points could also be antihistamines, mast cell stabilisers, and then also compression garments could also be helpful too.
Did you talk about symptoms of POTS earlier?
Leah:
A little bit. I just mentioned kind of dizziness and yeah.
Aidan:
So yeah. So like if somebody’s got POTS, like you know what it feels like, yeah, dizziness, racing heart, headache, all those kinds of things. Going through the management, I actually do find the management of POTS to be pretty interesting. So the first one is increasing salt and fluids. So just consuming more salt, drinking plenty of water, that increases the blood volume, which could help reduce the dizziness and improve blood flow. Starting with fluid is probably less interesting to me, but a general guide is to aim for 35 to 40 ml of water per kilo per day. To make that better podcast content, I’m going to convert it to a 75 kilo person. That would be above 2.6 litres of fluid per day. So that’s nothing crazy. Obviously, if you’re exercising and sweating a lot, it makes sense to go even higher.
Now, where it gets interesting is the sodium recommendations. For most people with POTS, common recommendations are to aim for an additional 4,000 to 10,000 milligrams on top of what you would have in your normal diet. Adding context, the guidelines in Australia are either less than 2,300 milligrams per day or 2,000 milligrams per day. And then once somebody’s got high blood pressure or hypertension, it’s less than 1,500 milligrams. Once again, circling back, the recommendation for people with POTS is to aim an additional, to have an additional 4,000 to 10,000 milligrams per day. That’s crazy high.
When you’re looking at that through food, that’s a lot, but if you converted it to teaspoons of actual salt, that’s two to five extra teaspoons. like, it’s more manageable when you think of it like that, but it is quite high. And there’s ways you can get around it with supplements. For example, you could have Sodii. Sodii is probably the most common supplement I would recommend for this. Do you know off the top of your head how much sodium is in?
Leah:
A thousand milligrams per serving.
Aidan:
Yeah, cool. So Sodii is a really good option for that. Element is another one. I don’t if you’ve ever used Element with people, but that’s also thousand milligrams as well. And you could have salt tablets. You could just add salt to food in general, but you’d want to be adding a decent amount. You could add salt in water with like diet cordial or something like that if you want. But a lot of people notice a pretty noticeable improvement in symptoms just by doing this. It’s pretty individual for people. So once again, you’d want to work with a person like a dietitian, GP, et cetera. It would be, I don’t know if you’ve come across this, have you come across anyone with heart issues?
Leah:
I haven’t yet, no, not at this stage.
Aidan:
Yeah, so I’d be curious in relation to like what a cardiologist would, what their thoughts would be in relation to that. But as a general rule, this is a good guideline. Then other stuff. So small frequent meals, and this is largely just because when you have a large meal, a lot of your blood gets directed towards the gut, which could cause issues elsewhere. This could make it, but just by having smaller frequent meals, you could keep your blood pressure a more stable especially if the meals are low histamine and balanced in nutrients as well.
Temperature control can be a bit of a struggle. So, POTS can impact body temperature regulation as well. Heat can trigger both pots and MCAS symptoms. So, it’s important to stay cool and aircon even using cooling vests and stuff like that could help reduce the lack of a flare up. And then getting good sleep is really important, even more important than it is for the average person. poor sleep can just exacerbate the symptoms. So, staying on top of that doing all those good sleep hygiene things, making sure you go to bedtime, all those things are even more important.
Leah:
Yeah, it is super complex once you start adding everything together. It’s like if you are someone that has hyper-mobility in pots without the MCAS, it’s definitely a lot easier to manage, but typically I do see them coming in this like package deal. Typically alongside things like neurodivergence, if someone has a menstrual cycle, there’s like often PMDD and things like that. So there’s usually so much to manage, but I think even starting, like this is the tip of the iceberg, but just starting with an overall balanced diet, focusing on an anti-inflammatory style diet as well, making sure we don’t have any micronutrient deficiencies that can be making the hyper-mobility or the MCAS worse. If there’s POTS, we’re focusing on sodium, fluid, all that kind of jazz.
But I think it’s really important if you have these conditions to build a team around you. Like it’s a very difficult thing to manage on your own, even just like in isolation, just with a dietitian. Like I’d recommend having more on your team. It’s like typically we’re looking for a specialised like exercise physiologist, dietician, rheumatologist, gastro to manage all these different moving parts.
Aidan:
Yeah. And putting in a shameless plug here. Like part of reason why we’ve done this podcast is also just to demonstrate Leah’s expertise. Like you hear her talk about say the low histamine diet and stuff like that. I’ve said how complex that is. Like imagine if you went to Leah and it’s just simplified like, I’m sure you’ve got like resources and stuff like
Leah:
So much. I’ve worked on so much to like simplify this over time.
Aidan:
Yeah. So like, I can’t imagine an easy way of doing it. So like that’s just another option as well. But apart from that, this has been episode 186 as always, if you haven’t left a rating and review, would massively appreciate that.