Hi, everybody. Welcome to Sunday service. My guest this week is somebody very, very special that as soon as I heard about her, as soon as I started talking to her, I knew much, like I knew about her colleague, Dr. Blitzstein, that they know things that nobody else knows my guest this morning is nutritionist Jill. Brooke, Jill has been a nutritionist for over 20 years and a pots patient herself for over 25. Amazing being that she’s only 27 years old. She grew up in Wisconsin, earned degrees from Princeton and UCLA, and then worked as a nutritionist and researcher for UCLA and the Pritikin longevity center. In 2001, she started her private practice in Pasadena, California, where she worked with adults, college students and sports teams focusing on cutting edge nutrition. Over the years, she has published three books, won several awards for outstanding service and provided initial consultation to Disney, including Mickey goofy, Pluto and mini Caltech NBC today, show and others. And in 2013, her potson symptoms worsened and forced Jill to move to an even cooler climate and work from home. I could go on, but it would take the entire hour and a half to complete all of her accolades. Jill, thank you so much for being here and welcome to the show.
Well thank you for having me. I really admire the forum that you have created. I think it’s just wonderful.
Thank you so much. So Jill, we have a lot of different people here from a lot of different walks of life. We have many post COVID long haulers here. We have many people who are coming out of COVID. We have many cardiovascular and pulmonary patients and a mixed bag. As you know COVID patients are so varied that you know, we’re kind of all looking for that magic bullet and we know that every patient is different. And the goal for today in, in my mind is I would love to kind of provide some clarity for so many of the buzz words that we hear in everyday talk. So we, you know, one day we hear you, you know, we know that COVID is inflammatory but we we’ve heard a lot about pots. We’ve heard a lot about autonomic dysfunction, autoimmune diseases, MCHS LDNs WTS. And the idea is that, you know, I would love to clarify some of these things today for our audience, so that they leave here, not just with another list of buzzwords, but with an understanding of what is their next step. So without further ado, can we please start with
The basics of inflammation? Sure. from my perspective inflammation is what you get when the immune system is doing its job. And when the immune system is going after, you know, potential bad guys in your body, there is inevitably some collateral damage and, you know, inflammation is a wonderful thing. So long as it turns off at the appropriate time. And what we’re seeing is that a lot of our lifestyle and dietary and environmental factors that we have nowadays make it harder and harder for that inflammation to ever shut off. I think highly connected with that is auto-immunity and auto-immune conditions are on the rise in westernized countries. And I think that’s not a coincidence because what happens in auto-immunity is that your immune system attacks some of your own healthy tissues and the reigning hypothesis around that is called molecular mimicry.
And it suggests that if your immune system is attacking a a perceived threat, say a virus, if you are unlucky and you just happen to have some of your own tissue that resembles that virus at a molecular level, then your immune, system’s not going to be able to tell the difference between them. And so it’s going to attack both. And so there are things I hope we’re going to have a talk a lot about gut health and what we’re learning is that there’s a lot of things that we can do to control how many, how many pieces of garbage, how many perceived threats enter our bloodstream? Because the more garbage we let into our bloodstream, the more chance there is that our immune system is just going to do what it’s supposed to do, which is identify potential threats and go after it.
And so, you know, of course the more that the immune system is doing that, the more collateral damage there’s going to be, the more opportunities there are for the auto-immunity to kick in, if you just happen to be unlucky and some of your own tissue cross reacts with some of those antigens. And so that’s why I’m, I’m really excited to talk about gut health. I prepared a few things to discuss before gut health, maybe like pots and mast cell activation syndrome. But when we get to gut health, that’s where the really promising stuff is because it suggests that we can do better than just manage inflammatory conditions. We can actually help them, we can prevent them. And that’s the stuff that I wish that I had known 20 years ago when I started having my auto-immune problems. Cause I think I think you can prevent a lot of damage.
Jill. I don’t want you to feel any pressure if we don’t get through everything today, you are welcome here at any given moment in time. And I think people will come back to that two quick questions. So when you say that our own tissue can mimic the virus, is that something based on Oregon or does that vary from individual to individual?
So that would vary from individual to individual and what they think is that some people are just unlucky and if your immune system is going after a certain kind of a certain kind of molecule, it has identified that as a risk is a danger to go after. Let’s say, if you’re just unlucky and you happen to have a little bit of thyroid tissue that at a molecular level just happens to look like that invader, then your immune system may not be able to tell the difference between the two and it might attack both. And what the research suggests is that your body can go a long time having some of this inflammatory damage or auto-immune damage without any symptoms. And it’s only when you get enough damage that you will actually start to see something like an auto-immune disorder where there’s enough tissue damage that you’re getting symptoms from it.
Gotcha. Thank you. And this, there may not be an accurate answer to this question, but one of the questions we hear every single day is is this going to be permanent? So like when you have an auto-immune problem, is are there people who let’s say have a period of auto-immune flare and then it goes away or like the particularly as it relates to COVID now, what do you think? And again, there may be no answer, but what’s your gut feeling, no pun intended you know, as to what’s going to happen going forward.
So I’m no expert on COVID. I have been seeing the headlines that there are some people who believe that there’s, it can trigger auto immunity or that it can trigger a mass cell activation syndrome. That’s another way to get inflammation. So I won’t pretend to know anything about that, but what I do know is that in the inflammation and auto-immune literature, there’s some really, really encouraging the reigning theories about auto-immunity and inflammation would say that you can halt it and that you can reverse it. And in these communities, you see a lot of people who have done that. I think that in some cases, you know, there, it may not be possible to undo all of the damage that has been done. I think healing is a different thing. And actually I would love to come back and sometime, and talk about some of the diets.
There’s some research on some diets that appear to do amazing thing for things, for healing. People who had, for example Ms, are now finding that they can heal nerve tissue that wasn’t thought to be healable. But that’s a whole different thing. That’s something called the fast mimicking diet and it is just mind blowing. So the healing is also maybe more promising than we than we might’ve thought just a few years ago. But as far as the inflammation and the auto-immunity goes there’s, the reigning theories would say that that is that you can, you can pretty much do a lot to help that. And there’s plenty of people out there. Even in the dysautonomia world who are, who are saying that they were able to help their dysautonomia through through gut health, but I should specify that there’s a lot of different reasons people can get dysautonomia. One of them appears to be related to autoimmunity and inflammation. There are other reasons too, like genetic problems or toxicities. And and so the one that appears to be holdable or reversible does seem to be the auto-immune one. And so if there is one silver lining to getting this after COVID, I would say that post viral dysautonomia is consistent with an auto-immune basis. And if it is auto-immune, then the current theories would suggest there’s more you can do about it.
That’s super encouraging to so many people. And you know, the other thing about it is that dysautonomia is again, so variable and presents in so many different ways for other people feel free to open your slides at any time and, you know, take us through
Through the gastrointestinal system.
Okay. Perfect. Are you seeing that? Okay. Yep. All right.
Right. I also, I just wanted to say hello to all the patients out there, and I salute you for coming to a nutrition talk the weekend before. Thanks guys.
I think the questions on everybody’s minds are, you know, what can I do to live better with dysautonomia and related conditions or better yet? Is there anything I can do to help reverse it? And we’ve kind of addressed that. I have to just say, as you know, this isn’t meant as advice, just education, talk to your doctor before making significant dietary changes. I should warn everyone that direct research on this, on people like us is very lacking. Most of the time, if we’re lucky we have some different populations and we can look at what the nutrition research said about them. Other times, it’s just a bunch of experts saying what they think should happen. Sometimes we have to make extrapolations from basic research. So most of the time, a lot of the, a lot of the nutrition recommendations are somebody’s best guess, and they seem to be harmless, but at the end of the day, you have to try them out for yourself and see what is best for you. I put this picture of me doing acro yoga here. As a reminder, I do acro yoga because I pretty much have to do acro yoga. I don’t manage gravity that well. So that’s just my reminder that I’m a pots patient and a mass cell activation syndrome, PI patient and an auto-immune autonomic neuropathy patient. So I don’t handle gravity that well. So thanks in advance for understanding when I am doing this in a reclined position, you may also see my face, have a nice mass cell reaction to the computer screen.
Are people able to sign up for that treatment if they like?
Okay, so we’re going to have kind of two parts. Part one is managing pots GI dysmotility that oftentimes goes along with pots and mast cell activation syndrome. And then part two can be the gut health, the inflammation and the auto-immunity. And that’s what I’m really excited to talk to you about. But let’s start with the basics. Dysautonomia, I think you all know what it is, but just to review, it’s a general term for when the autonomic nervous system isn’t working properly. So this system oversees the automatic stuff, the involuntary functions, the body like blood pressure, heart rate digestion, all those good things. And there are many different diagnoses under the umbrella of dysautonomia, but the most common one is pots postural orthostatic tachycardia syndrome. It’s a terrible, terrible name because the first three words refer to the heart racing when a patient changes position from reclining to upright, and that’s the most measurable symptom of pods. But I think most patients would say it’s also the least bothersome symptom. And I put an asterisk next to the word syndrome because that’s the word loaded with all the other symptoms and complexity going on. Right? So there’s so many symptoms. It’s okay if you can’t read all of these, the point is that there’s a lot of them, and these are just the symptoms that occur in more than 50% of patients, but the most common ones besides the tachycardia are lightheadedness, fatigue, headaches, palpitations, nausea, or vomiting.
Some of these symptoms get better by reclining. Not all of them. You hear the term orthostatic intolerance as being the hallmark of pots. And that just means that you don’t do well in an upright position.
Is made more complex by the fact that it has a whole lot of comorbidities, for example, Ehlers Danlos syndrome and joint hypermobility syndrome. That’s a genetic collagen disorder that makes your, your college collagen overly stretchy mass cell activation syndrome, which we’ll talk about today in which some researchers think can be triggered by COVID. And then a lot of auto-immune conditions. Dr. Blitzstein my boss was the first to to publish research, showing that pots patients tend to have higher risk for a whole lot of different auto-immune conditions. So that is consistent with 40 to 50% of patients reporting a post viral onset because the thinking is that maybe in some cases, the immune system gets riled up and then doesn’t settle back down. And they’re now starting to find some unique auto antibodies for pots suggesting that maybe maybe in some patients pots has an auto immune component. There’s a lot that experts still don’t understand about pots, but leading experts believe that there are three main underlying mechanisms. And the first one is hypovolemia, which just means low blood volume, or literally just not having enough blood in your veins. And that happens in pots patients because sometimes our kidneys excrete too much salt and too much fluid
Means that the autonomic nerves may not be doing their jobs, right? So those automatic functions might not work. Right? So for example, when you stand up, your blood vessels may not, vasoconstrict properly to help the blood circulate upwards. So instead you can get the blood
Pooling and these two mechanisms
Can really kind of gang up on you to Rob your brain of circulation when you’re upright because you have not enough blood to start with, and then what you do have pools in your lower body. So it’s kind of a raw deal. And so then if your brain isn’t getting enough circulation, then it may put out adrenaline in an attempt to get more blood to the brain. And if it’s doing that all the time, it can lead to a hyper adrenergic state, which means that you’re just chronically in that state of fight or flight.
Jill, can I ask you, is hypovolemia the same as dehydration? How are they related?
Yeah. Yeah. Most people get hypovolemia because they’re dehydrated, they didn’t drink enough water pots. Patients are special in that they can drink plenty of water and still be hypovolemic because their kidneys are just, the kidneys are supposed to recycle some salt and fluid and instead the kidneys just throw it.
But the good news is that that’s kind of our in, to using nutrition to make pots better because we can offset that hypovolemia and when we do that, it actually helps multiple pots symptoms. So that’s why you always see the number one. The number one recommendation for pots patients is to gradually increase their intake of salt in the water. So salt up to 10 to 12 grams a day water up to two to three liters. And your pots doctor should give you an amount to aim for because some people, if they have high blood pressure or there’s a type of pots called hyper adrenergic pots, where you can get really big adrenaline spikes and those people, they worry about their blood pressure. So they may tell them to do less salt and water. But there’s a couple things to keep in mind about salt.
People can sometimes confuse salt and sodium, and it’s not exactly the same thing. Salt is sodium chloride, so it’s 40% sodium by weight and 60% chloride. So that means that 10 grams of salt or two teaspoons is about 4,000 milligrams of sodium. And if your doctor told you to aim for five grams of salt per day, which would be common, that’s only 2000 milligrams of sodium, which is less than the average American eats. So it’s not as crazy high as some patients assume. Now salt gets confused with sodium even by doctors. And just yesterday, I noticed that one of the top three medical institutions websites had it confused and they were telling pots patients to consume up to 10 grams sodium per day, that’s 25 gram salt or five teaspoons, and that’s way too much. So so just remember that it’s the salt, not the sodium.
Now a lot of people have trouble eating when they have pots. So it is hard to get that much salt. So you can put it into your drinks or take a pill, but some people do get nausea or stomach upset with the pill. If you’re aiming for a specific level of salt or sodium per day, keep in mind that food labels will show your salt will show you sodium, not salt. So you’ll have to do some math to convert it. But I think the easiest and the healthiest way to get your salt is to just measure it out in the morning, you know, in a teaspoon or such, and then sprinkle it on real whole food throughout the day. My final advice, no one ever talks about this, but I think it’s really important and valuable for pots patients to find their lowest effective dose of salt. Because like anybody, I suspect more salt than we need might have consequences for our bone density, our blood vessels, our gut bacteria. We’ll talk more about that later. So I think more isn’t better and less. It’s helping you to feel better fight the dizziness or the other symptoms that you have.
Jill, where does that fall like with like, cause people talk about salt and some people are hesitant to just add it. What about electrolytes is that same equal?
Sure. So you could do electrolytes with salt as part of it. They also make salt-free electrolytes for people who are trying to reduce sodium. And one big reason you don’t want to do that. If you’re increasing your water is actually that’s my first thing on the side, hyponatremia is dangerous and that’s when you drink too much water without enough salt. And every once in a while I get a client probably once a month, I get a client who tells me they get more dizzy when they drink water instead of less. And when I ask about their salt intake, they’ll say they were skipping the salt part because salt’s not healthy. But that’s actually dangerous because in hyponatremia we, we know that water tends to be drawn to the salt in your body and your bloodstream is supposed to be the saltiest thing. And so if there’s not enough salt in your bloodstream, all that water will go to the next saltiest thing, which is your brain. And so it can it can get kind of dangerous. So so yeah, if you want to do electrolytic drinks, that’s great. My suggestion is to just avoid the food colorings and the artificial sweeteners. And when we talk about gut health, it’ll be more clear why but if you, the main thing is if you’re going to increase your water, you do want to
I have salt with it. Do you have a favorite electrolyte drink that you recommend to people or a couple?
My favorites are just anything that don’t have the artificial colors, flavorings, or sweeteners. The most natural one that I know of that I use myself is called Utah sea minerals. And they just took some minerals out of what used to be in ocean in Utah. And that was the most natural one, but some other really popular ones are noon, drip drop, electro mix banana bag. I think there’s actually a patient who is starting a starting a little company where you can do samples. Cause lots of people are, you know, they have a hard time. They don’t want to spend lots of money finding the electrolyte drink that they like best. So you might keep your eye out for that where they would send you samples. So you can see what you like.
And just one more salt question is all salt created equal. So like iodized, Himalayan, sea salt, kosher salt.
Yeah. That’s a really good question. So it’s not all quite the same. So my recommendation, so nobody talks about this in the POS world, but I think about these things and I think you should probably not do purely iodized salt because that’s calibrated for a normal salt intake, not somebody who’s going to be taking in, you know, 10, 12 grams a day. The other one that you don’t want to do is dead sea salt. That one has some, has some stuff that you don’t want to be taking in. Other sea salts are all, I think pretty good. The Himalayan sea salt is good. You will read that some salt is found to have microplastics in it because our oceans are just getting dirtier. And when they talk about that, the experts will always say, Oh, it’s a minuscule amount. It’s insignificant, don’t worry about it.
But as a pots patient who is consuming more than the average, you know, if I’m having twice as much salt as everybody else I’d rather not take that risk. So that’s why I think that either the Utah salt or the Himalayan salt are kind of nice, or if you find a sea salt that has been tested not to have microplastics in it. There is some new research saying that when we get plastics and BPA in our body that might contribute to auto immunity and I think that’s the last thing we need. So so that would be my suggestion.
Other ways to boost your blood volume, there’s a sports nutrition trick that athletes use to hydrate fast. And that’s just to almost kind of chug the first two cups of the day followed by occasional sips. So you can see if that works for you. There are some doctors who warn against people doing more than three cups of water a day. I mean, sorry, three cups of water per hour because they think their kidneys can’t keep up now, theoretically, a Potsy kidney might be getting rid of all that water fast, but it can’t hurt to try to even your water out throughout the day, not do too much of it too fast. Exercise boosts, blood volume. So if you’re able to do that sleeping with the head of your bed, elevated a few inches, boosts blood volume, it trains your body to hang on to more blood.
So the way you do that is you just put a couple of books or bricks, or you can buy risers on Amazon for a couple dollars under the head of your bed. Temperature extremes make you lose blood volume. Not just when you get hot and sweaty, but also if you get really chilled that will draw a bunch of blood and fluid into your core and make more of it, get excreted faster. And then the last one is avoiding diarrhetics, especially alcohol pots patients seem to do really horribly with alcohol. So if this is your first Thanksgiving with pots, you might want to go slow.
The other big advice for pots patients is to do small frequent meals. Lower carbohydrates may help a lot of pots patients have trouble controlling their blood sugar. So lower glycaemic small meals can help with that. In healthy people, chewing sends more blood flow to the brain. So that’s worth a try. Chewing more is healthy. Anyways, a lot of pots patients feel bad after they eat. Sometimes they get a lot of tech cardio or dizziness right after eating. And it might be because when you eat, you’re sending blood to your stomach and you already don’t have enough blood for everything you want to do. So lying down after eating can help in that situation. A lot of pots patients feel worse in the morning and better at night. So nibbling throughout the early part of the day, and then getting in a nice nutritious meal later at night works for a lot of pots patients.
Caffeine can go either way. On the one hand, caffeine is a vasoconstrictor which can help some pots patients, but on the other hand, it can make your adrenaline worse. And so for other pots patients, it just drives them over the edge. So something you gotta test for yourself pots patients appear to have about four times the rate of celiac disease as the general population which is still only 4% of POS patients. But if you suspect you have celiac disease, it’s worth getting it checked out. And even if you don’t have celiac disease, pots patients have a higher rate of just gluten intolerance and gluten sensitivity. So testing how you react to gluten and cow’s milk and sugar is good. Cause those tend to be the three that a lot of pots patients report having.
Jill, how do you test for that?
So for celiac disease, you go to the doctor and they give you a test. And the important thing to know for that is that you actually have to have been eating gluten if you’ve been on a totally gluten-free diet and then you go get the test, it won’t be valid to test for a gluten sensitivity. You just have to go a hundred percent gluten free for about four weeks and see if you feel better. And as we’ll see, when we talk about the gut stuff, gluten is a really a really special food because gluten signals to your intestinal barrier to get a little bit more porous. And so if you’ve ever heard the term intestinal permeability, gluten increases, intestinal permeability, and as we’ll see, when we get to that part, that can, that can make a huge difference for inflammation because more intestinal permeability means that more of whatever is in your intestines is allowed to get into your bloodstream. And so it just gives your immune system more stuff to
Perturbed about. So that’s the reason why gluten can affect so many people in so many different ways with so many different symptoms is because that, that is the thing that might be just letting in a whole bunch more into your bloodstream.
Pots patients are known for having a couple of nutrient deficiencies low on iron is one and low vitamin D is another. So if you’re getting your blood tested to anyways, maybe get those checked out Dr. Blitz Stein again, she’s always ahead of the curve. If you want to stay up on the latest, greatest pots information, you should follow Dr. Bluestein on on Facebook or on Twitter or something. But she was the one who showed that being low in vitamin B one Simon can mimic pots symptoms and she’s actually had a couple of pots patients who were really struggling, nothing helped. They measured their vitamin B one. It wasn’t even that low, but when they supplemented, they got way, way, way better. So that’s a good thing to be aware of. Low magnesium is a problem in a lot of people, you know, much of America is low in magnesium but it can make relaxation more difficult. And when you are already in a hyper adrenergic state, relaxing is tough anyways. So you don’t want to compound it with a magnesium deficiency. So magnesium is in a lot of healthy foods, beans, greens, nuts. But you can also take a supplement. We’ll talk about supplements in a second. But like I said, at the end of the day, you kind of have to figure out what works for you. So keeping a food and symptom journal is what we recommend so people can figure out their own unique books.
Pots, the challenge is really just eating enough, real food in my experience, especially with younger patients who maybe have never learned to cook yet. Because when you’ve got pots, your energy is bad. It’s hard to stand up. You might be heat and tolerant. And so all of these things make it really hard to cook and prepare food. Sometimes the fluorescent lights get people. So even just going to the grocery store can be an ordeal. And then on top of that, your doctor has told you to eat a bunch of small frequent salty meals. So I encounter a lot of pots patients. Who’ve just been kind of living on pretzels and Gatorade for a long time. And and that doesn’t really work out too well, as you can imagine in the longterm. And so I think the challenge in politics is to figure out, find a routine, find solutions that make it possible to eat real food when possible. So these are just a couple ideas. If there’s any family members watching right now who have a pots patient in the family helping, helping the food get into the house and getting to a state where it’s edible can be a huge, huge help. Yep. I just like to remind people that the pretzel and Gatorade diet does not heal. And again, when we talked, when we talk about gut health, you’ll see how that might be moving you in the wrong direction, in the long run.
These are common pots supplements, as I mentioned, there’s no research on what is best. So these are just ones that anecdotally patients are using and liking. And I’m not going to say a lot about supplements. Now. I actually hate recommending supplements because I have real trust issues with them on several levels, but these are what people tend to take. And usually like if you can get your nutrients from food, that’s preferable.
But if you were just kind of curious, I want to take a screenshot, I’ll leave that there for a second. Now the vast majority of pots patients actually have GI dysmotility. So that means that the food goes through you either too fast or too slow. It’s kind of a Goldilocks situation. And it appears that you know, only about a third of patients have, have appropriate motility in their gut. The problem can be either that your stomach is too fast or too slow to release food, or it can be your intestines. A couple of contributing factors might be neuropathy. The nerves that serve your GI tract might be damaged, or we know that when you’re in fight or flight mode, then you don’t get enough blood circulation to your digestive tract. CBO is something that we’ll talk about with gut health, but it stands for small intestinal bacterial overgrowth.
And we know that there are supposed to be a lot of gut microbes that live at the very end of our digestive tract. But if you have slow digestion, sometimes those can crawl up into the small intestine. And when they do, they cause a lot of problems, a lot of discomfort, gas, bloating, IBS type symptoms. But then they can also turn into a vicious cycle with the GI dysmotility because those gut microbes can cause your cause your intestines to either slow down or speed up. So we’ll talk more about it later, but the main thing to know is that CBO is treatable. And so if you have it, you want to treat it.
So if your GI motility is too fast
And you’re scared to leave the house after eating because you aren’t sure what will happen. Some things you can try are eating more fat, more fiber. And I put a question Mark there because the pots literature says fiber slows gut motility, but the gut microbiome research says fiber speeds up gut motility. So this happens. Sometimes we get conflicting information. So test for yourself, a pectin supplement can help make your your food more viscous and can slow it down. You should be eating complex carbohydrates over simple carbohydrates anyways, but that can help and then avoid drinking for 30 minutes after a meal.
If you have the opposite problem and you want to speed up your motility, you can do small frequent meals. You can do more blended or pureed meals. The pots literature would say to do less fat, but again, we talked about that test for yourself. And fiber, I mean fat and fiber, you have to test both of them cause there’s different kinds of fat, different kinds of fiber. They don’t all act the same way. Dairy for some people can be very, very constipating. So sometimes getting rid of dairy can really help. Having adequate magnesium helps everything move through you a little bit faster. Chewing really stimulates Paracelsus the movement of your intestines as does walking or wiggling your torso. So for patients who aren’t really able to walk sometimes if they just sit on an extra ball as they’re eating or opening their mail or whatever, and doing a little bit of gentle torso movement can help get some of that movement through. And then the relaxation techniques, the reason that those can help is that in order to have a bowel movement, certain muscles need to be able to relax. And sometimes sometimes it’s just part of that fight or flight and not being able to relax can make it hard to let everything do what it’s supposed to do.
A lot of pots patients have
Trouble eating solid foods. So these are just some ideas for drinkable foods, if they needed they’re needed. If your appetite is very low, you can try combining sweet and salty flavors to boost your appetite. It’s called tastebud ping pong. And I learned about this, you know, back when I was mostly seeing people who wanted to lose weight and tastes blood ping-pong was causing them to be obsessed with food all day long. But now we can try using it in reverse to get people more interested in food. And the other thing too now is if you need to absorb more calories, pre-blended foods will help with that. So for example, if you were to eat a bunch of nuts, you would absorb about 20%, fewer calories than if you were to eat nut butter, because when it’s just already, pre-blended like that, you can absorb more. So that’s kind of a pots tips that exist. Next we’re gonna move on to mass cell activation, but anything more about pots, any questions or anything else we should talk about
Jill? I, I did notice in your list of supplements a lot of them seem to be that they would be taken care of in like a multivitamin or something like that. Would you recommend that for people?
Yeah, I would recommend a multivitamin, I guess, but I wouldn’t recommend assuming that it’s taking care of you. One of my issues with vitamins is that what they should do for us in theory, they often let us down in practice. And so I’ve not ever seen any good research showing that people really benefit that much from a multivitamin. And so we just want to make sure it doesn’t make people think that they’re taken care of. And so that now they don’t have to work hard to get that stuff from real food. Gotcha. yeah, it’s probably a good insurance policy
Also. I speak to the guys at Wilner chemists a lot who are like the absolute like supplement nerds. Like they’re like the star Trek of supplements. And they say like, people are coming in right now and asking for like 10 different anti-inflammatories and my feeling. And please tell me if I’m right or wrong. Is that when you add 10 anti-inflammatories or add 10 of anything at one time, that could be inflammatory? No.
Well, I guess my feeling is that for one thing, it depends on what they are. We know that when you extract just one vitamin, for example, out or one antioxidant out of a food and put into a supplement, it does not act the same as if it were in the food. We know that when antioxidants are in food, especially when we eat them together. So if we eat like when you eat the rainbow, it sounds like so trite, but honestly, when you, every antioxidant is a different color. So when you eat those together in real food, we know that there’s a synergistic effect, right? That, that the nutrients end up being better than the sum of the parts and that holds for food. For supplements, I have not seen great, like, look, I guess one, one way I look at it as what I think of a supplement that’s been around for 50 years, that everyone still loves and takes.
Right. Can you just, can you think of a single one? Do they ever stand the test of time? Look at calcium, we thought calcium was the one we could, we could rely on. Right? Good old calcium for our bones. And now Johns Hopkins is finding that it appears that when you take high dose calcium, it doesn’t actually get into your bones. It gets into your arteries where it calcifies those instead and causes heart damage. And so to me, it’s a good reminder that sometimes our assumptions seem so logical at the time, but it can take 50 years to actually see what are the unintended consequences. And so that’s, that’s just one reason. I am not so comfortable with supplements. The other being that they have a really bad track record for purity and accuracy on their labels. You know, when third-party testers go in and take supplements off the shelf, they find that it’s kind of all over the map as to what is actually in the supplement.
So I guess that’s a long way of saying I have deep trust issues. If I’m food, you can, I’m sure there’s some amazing companies out there that are doing really good work. But by the time you have enough evidence, I mean, the other thing that’s becoming clear is that when research is funded by somebody with a profit motive, it does not get the same results on average as research funded publicly. So so I have a hard time getting trust in supplements. I take some but I don’t love them. Yeah. Great points. Thank you. All right. Should we move on to mass cell activation syndrome? Absolutely. Okay.
So, you know, you mentioned that you hadn’t seen a lot of, a lot of COVID patients, but co you know, mass cell activation is something that’s like super hot topic in COVID and post COVID right now. So if you, you know, if we could try to incorporate that, that’d be awesome. Thank you.
Yeah. Yeah. And I should say, I have talked to a lot of post COVID patients, but I don’t claim to know a lot about COVID just, just cause I feel like it’s one of those things where we’re probably going to look back in a year and think our understanding now was so primitive, but yeah. Mass cell activation syndrome is something that, that some of the very top mast cell researchers think that they are seeing as post COVID syndrome. So so mass cell activation syndrome is not under the dysautonomia umbrella, but it’s often present in dysautonomia patients and it can actually exacerbate a lot of dysautonomia symptoms. So what are my cells? They’re part of the immune system they’re found throughout the whole body, but especially at barriers. So like they’re on the skin, the GI tract, the lungs, the blood vessels places where they presumably would try to protect us from things coming from the outside world, when they perceive a threat, they degranulate, which it means that they just explode and they can release a whole bunch of different chemicals called mediators.
There’s over a thousand different possible ones that they’ve identified so far. A couple of the famous ones are histamines or cytokines that can come out and they can kind of trigger a chain reaction. So the histamine from one can make the next one go off. So in mass cell activation syndrome, a person’s mass cells tend to be overactive. They either degranulate too easily or in response to two things that are not actually dangerous. And so the symptoms can vary hugely depending on where the mass cells degranulated and which of those chemical mediators they released.
So this was part of an article put out by Larry Afrin. Lenny went Weinstock and Gerhardt moldering. So those are three of the very top mass cell researchers. And they think that the COVID-19 hyper inflammation and post COVID illness might be a mass cell activation syndrome. The thinking being that possibly when mass cells see the SARS cov two virus, they get, you know, whipped up into a frenzy and stay in a higher rate of activation. So this is a list of symptoms of mass cell activation with the symptoms in bold being symptoms that are also being seen in COVID-19 or post COVID syndrome.
The main takeaway is that mass cell activation syndrome can cause almost any symptom you can think of
They’re everywhere and depending on which kind of tissue they release their mediators into, that’s where they can have their effect.
So you’ll see a lot of overlap with dysautonomia. And one theory is that M casts can contribute to neuropathy because there are a lot of mass cells near nerves. So if they’re constantly releasing their inflammatory mediators, it could cause some nerve damage.
So activation can take a long time to get diagnosed because it can imitate a lot of other diseases. A lot of doctors don’t know about it.
Say I found out that I had M cast by coincidence because I took anti-histamines for something else. And those are the first line of therapy and AMCAS and I immediately felt better in like 20 different ways. So feeling better on over the counter anti-histamines might be one clue that you might have
Of AMCAS and once you
Have them cast, it means you’re now a part-time detective, because the main thing that you can do is to try to identify specifically what are your triggers and then avoid them. And I know right now you’re probably, you know, thinking I know my worst trigger, it’s the Corona virus. I’ve spoken to a few patients who have lab confirmation that they still have Corona virus particles in their intestines even months after having the virus. And they haven’t been able to get confirmation as to whether these particles are alive or dead, and it’s unclear whether they might be contributing to the problem.
I have no idea if this will help, but it seems harmless to try. But this is a list. This is an article listing foods that have antiviral effects against SARS cov, two virus. And so it lists garlic, ginger Shataki mushrooms, my talking mushrooms, reishi mushroom extract, chlorella extract, and chaga mushroom.
You know, if you tolerate and like these foods, one thing you could do is try eating more of them in just culinary normal doses.
I said, I don’t know if this would make a difference if you have COVID fragments that are still making your immune system angry in your GI tract, but I thought I would mention
They’re mass cell triggers. If, if, if you have full-blown M cast now, then in theory, lots of things could trigger it. So these are a bunch of the potential triggers. And you’ll see that it can be a lot of different things. Yeah.
The emotional or physical stress is really a big one and that tends to get most M cast patients that I know. So getting really proactive about managing that maybe, you know, making the lifestyle changes that you have to
Can be really valuable
As you’re trying to identify your triggers. It’s good to keep in mind that mass cells are usually more active late in the day. So there may be foods that you can eat at 10:00 AM, but you can’t eat them at 10:00 PM. It’s kind of unfair that, you know, a lot of mass cell reactions happen at night. We know you’re in your PJ’s and you’re ready to go to bed and it’s not the time you want to deal with a muscle reaction. Okay. The big thing that you can do to try to control mass cell reaction with diet with diet is to find out if avoiding dietary histamines helps you. So histamine levels rise as foods get more ripe or more aged. And so the more fresh, the lower the histamines, the less fresh, the higher the histamines. So just keep that in mind. So the highest histamine foods include these things listed here. And
So the trick is to pay attention to your symptoms, see what they’ve been like, maybe write it down, then go for weeks without any of the highest histamine foods and see if you feel better. So during that four weeks, you’re really aiming to have fresh food. So fresh vegetables, fresh herbs, fresh fruits, fresh meats, frozen food can also work and make it more convenient since freezing slows, histamine production. So if you want to cook for the following few days, just freeze anything you won’t eat immediately and thought just
Now everybody’s histamine tolerance is different. Some people see no effect on this. Some people find that they’re fine, just so long as they just avoid the major histamine bombs like the smoked fish. Other people have to work really hard and, you know, avoid every little histamine they can find. So everyone’s different. You can figure out what your tolerance is.
A really key thing is that non-edible histamine triggers may affect your tolerance for the edible histamines. So for example, when you’re stressed, you might have to eat lower histamine than when you’re relaxed. I live in California. And so among AMCAS patients in California, it’s kind of well known that during wildfire season, we need to eat lower histamine because all that wildfire fire smoke is tending to set us.
So this is not all that there is to a low histamine diet. If you feel better, you can do a deeper dive. And there’s more that you can do. But doing this should be enough to tell you if it’s worth it or not. And you really only want to continue if you do feel better. Because unnecessary food restriction backfires, and I see this all the time, people thought they were doing the right thing by avoiding anything they ever read could possibly be a problem. So they’re left with only a very low variety and over time that backfires for the reasons here. And especially when we talk about gut health, we’ll see that if you want to have the biggest diversity of gut microbes, you have to have the biggest diversity of natural foods. And so a very, very limited diet will take you in the wrong direction.
These are some common supplements that MTS patients are using. The one supplement that I actually feel really good about recommending is called neuro ProTech. And it’s a combination of natural mast cell stabilizers course luteolin and rutin. And it’s in an olive oil olive Palmer space. The olive oil is another natural mast cell stabilizer. And the reason I actually trust this supplement is that it was designed by a top mass cell researcher, Dr. Theo Theo, Hardy’s at Tufts university, and he did all the basic research. And then he made the supplement. He tests them for purity. His website also has other variations of the supplement. And you can get it in skin cream, if that’s where your mass cells are angry. These other supplements have some research behind their ability to stabilize muscles.
But the main thing with AMCAS again, is to just find your best routine.
When it comes to eating, you might find there’s a time of day that works better for you, where your muscles are less reactive. Some people find that either cooked or raw is a lot better for blended and pureed foods usually are less likely to trigger mast cells. One thing that is kind of a cruel fact of guess is that the act of eating itself can trigger muscles. But so having foods that are kind of pre digested by being blended or pureed can help finding a relaxed and comfortable place to eat actually really can make a difference because we know stress activates cells. So I’ve had clients before who would react if they sat in their kitchen to eat, but if they went outside for a walk in their yard where they were with nature and felt like they were in their happy place, then she could eat without a reaction.
And I don’t know if that was a fluke or if that’s a common thing, but I find that interesting. And I think that’s why I’ve seen a lot of people helped by relaxation techniques because AMCAS can make you develop a lot of anxiety around food. And then that anxiety becomes a self fulfilling prophecy because anxiety can trigger mast cells. So relaxation techniques have helped a lot. And again, just sticking to the widest variety of foods that you can because the next thing that we’ll talk about is going to be gut health and how that is the huge, huge, huge thing, underlying inflammation and inflammatory conditions. And you cannot have good gut health when you only are, you know, eating a few different foods.
Jill, would this be a good time to go to questions? Yeah. Okay. So so Beth, why don’t we give people the option to unmute and we’ll take a few questions and then maybe we go to get help gut health the next time we begin. Does that work, Joe? Yeah. Perfect. You know, you reminded me about eating during stress. When I used to work on an ambulance, we used to stop to go get eating and then we’d get a call and like you’d wind up beating like a six inch or 12 inch sandwich on, in 30 seconds on the way to a call. Probably wasn’t the best.
Yeah. I’m hearing a lot from patients using something called dynamic neural retraining, where they’re seeing a lot of benefit from that. And I think it has a lot to do with just training the stress response out of your body, which is kind of interesting.
Yes. From your mouth to God’s ears, ladies and gentlemen, we will make you unmeetable. So if you do have questions, let’s try to please keep them just more general than your personal nutrition consult. And then we will have Jill as many
Times, and as often as she is willing, Oh, hi. I have a question about this nutrition and sleep and like the sleep disorders that come with visit to Nomia or maybe mass cell too.
Yeah. so there definitely is a good amount of sleep disturbance associated with pots and probably other dysautonomia too, but it’s more studied in pots and it oftentimes gets explained as unrefreshed sleep. And it’s a big problem. Even, you know, there’s, there’s more information about it proving it’s real then having good solutions for it. So I’ll, I’ll tell you the nutrition research says that there’s a couple of things that can help. And they’re kind of weird random little things. One is eating two Kiwis, a couple hours before bed. And that was proven to make people fall asleep faster, have more efficient sleep. And I think they ended up getting about, I want to say an hour more sleep just from two Kiwis. And what they think is that the antioxidants might have helped. They think that insomnia, maybe there’s some oxidative issues there and that that antioxidants can help.
The other one was just a few ounces of tart cherry juice, and they found that that was able to help people sleep better and longer. And they think it might be because there’s some natural melatonin in there along with the along with the antioxidants. But I have my own personal opinion about sleep that I cannot prove. I can just only say it was life-changing for me. I think the sleep problem in pots has a lot to do with that hyper adrenergic state. And it’s very hard to settle down and turn off the mind and relax. So the first thing that helped me was funny podcasts. I have them on all night long and my rule of thumb is if I wake up in the night, which I do a lot. Cause if you have high adrenaline, you don’t sleep that, that deeply it’s don’t think just listen to the funny podcast, right?
Cause if you start thinking it’s all over, but I have to say the absolute life-changing thing. And I’m so lucky that I have this, but if anyone else out there has access to this, my dear sweet husband at night before bed, he will watch television and he will just give me just an amateur massage, nothing fancy, just squish the feet, squish, the shoulders, switch the head, the hands. And that is an absolute miracle for me. And that is the only reason I sleep every night. And so if anyone has a nice family member willing to do something like that I swear, I swear that is an absolutely enormous thing. And I’m sorry, I don’t have more solutions than that
Asleep. Thank you, Joel, can you speak about, a bit about both the pots and the mass cell, actually more a mass cell potentially causing the burning pins and needles that a lot of the post COVID patients I know myself included have and how either of those conditions really relate to it. Mine came on really late in the game at 6.5 and it’s excruciating.
I’m sorry. Okay. so I’m not a doctor, but my understanding of all this is that that would have a lot to do a small fiber neuropathy. So the small fiber nerves nerves include both the autonomic nerves and the sensory nerves. So it’s pretty common in pots that people will have neuropathic pain because likely both, both kinds of nerves are being affected. So the first thing we know is really watch your blood sugar because if your blood sugar is chronically high, that will cause more neuropathy. So the first, you know, things don’t make it worse. There is one study that showed that when people went on an all plant vegan diet that their neuropathic pain went away, I suspect that it didn’t really have that much to do with being vegan. I think it just more had to do with eating really, really clean and helping your circulation because the whole reason that high blood sugar can cause neuropathy is that it it, when your blood sugar gets high, your circulation gets bad.
When it comes to the mass cell activation syndrome, there’s a lot of mass cells that are located very close to nerves. And so the thinking is that maybe those can cause some damage to nerves. When those degranulate as far as solutions for neuropathy, a lot of patients take alpha lipoic acid. And that may be of benefit. I do a lot of work with the LDN research trust, and I don’t know if you’ve heard about LDN for low dose. Oh, okay. Yeah. So low dose naltrexone in my mind, again, I’m not a doctor, but my personal opinion is that anybody who has pots auto look at low dose naltrexone because it has three things to offer a pots patient. The first is the pain relief. The second is it’s an anti-inflammatory, but the third is that it can help with it can help speed gut motility and and so it off. So it, you know, it almost kind of seems like it was made for, for pots patients. And I know so one of the top mass cell doctors in the whole world Leonard Weinstock at the university of Washington uses a lot of LDN for mass cell patients and he finds
Sorry, Jill, you just got muted accidentally. Sorry.
Oops, sorry. Good thing was going to say is mass cell patients appear to be more likely to get SIBO, small intestinal, bacterial overgrowth, and some of the top mass cell doctors are finding that if you have that, and if you treat it a lot of your mass cell symptoms can get better. So that is something to maybe look into
Jill. I want to thank you so much for being here. Today we got through so much information and I know there’s so much more, it’s something that we could probably talk about for days. So let’s try to set up a time for you to come back here sometime soon. And do you want to, w we’ll make your website available it’s nutrition with jill.com, right? So if you would like to reach out to Jill for consultations or anything like that, nutrition with jill.com and I hope everybody has a great Sunday and have a great week feel good, everybody.
Thank you so much, Joe.
Thank you. You know, the next information is the stuff I’m really excited about. So I hope that’s what will really turn people’s life around.
It reminds me of that old question. How do you keep a nutritionist and suspense? You know, we’ll tell you next time. So anyway, have a great week, everybody.
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