Chronic Hives and Mold with Beth O’Hara
Wondering if your hives might be from mold exposure? Daily hives, migraines, brain fog, fatigue, gut issues, pain. What do all of these things have in common? These seemingly unrelated symptoms may be connected, especially if you have a history of mold exposure.
In my chronic urticaria journey, I have discovered many underlying conditions that may contribute to hives. Only recently did I connect mold to these issues and my systemic symptoms.
My mystery symptoms started in childhood but I never made the connection until I heard Beth O’Hara of MastCell360 talking about her mold exposure in childhood. I grew up in poverty and when a pipe in the wall burst into my bedroom, my parents couldn’t afford to fix it. My dad did what he could but a portion of the pipe was underground and he was not able to fully repair it. This resulted in water dripping into my bedroom anytime someone showered. In a family of eight, that was pretty frequent, and the result was an always damp carpet and even mushrooms growing on the floor.
All this to say, what she said resonated with me so much that I purchased her advanced precision mold course. I took the urine test she recommended and tested positive for mycotoxins. Even 15 years after moving out of that house, I am still suffering the consequences. I now have a solid action plan to detox from the mold and I have hope that this will be the solution to my long chronic urticaria journey.
I asked Beth to speak about how mold might be connected to chronic urticaria. She shared a lot of great insights that I hope will help you in your journey.
Introduction: Beth’s experience with chronic hives and mold.
Sarah: Beth is a functional medicine naturopath and a genetic analyst she specializes in mast cell
activation, histamine issues, and also mold so I feel like she’s got some really good information for us today. Beth if you want to tell us a little bit about yourself.
Beth: Sure. Well first thank you so much for having me, Sarah. For my 16th birthday, all I
wanted was a copy of grey’s anatomy so that tells you how big of a deal this was for me. When I was a kid we had moved into an old farmhouse and it seemed like a big adventure but my health kept going downhill and one of the things that I can really relate with your group with is having those chronic hives.
So growing up in the country one of my jobs was to pick green beans, which if you grow up in the country, you eat a lot of green beans and we would can those and any time I had to get out in the garden and pick things, I would be just covered head to toe with these welts and itching. Even outside of the hives I was so itchy all the time. I would scratch my skin in my sleep until I bled and I’m sure a lot of people have that experience and nobody knew what I was dealing with other than they just called it allergies. One of my other jobs was to feed the chickens and whenever I had to feed them dried corn I also break out in hives from head to toe.
So I was just miserable but my health issues accelerated as I went along and by the time I got to college I had such severe chronic fatigue, muscle pain, joint pain, fibromyalgia that I had earned multiple scholarships to medical school, which are hard to get, and I had to turn them all down. It was just devastating and instead of becoming the neurologist I wanted to be, I became a chronically ill patient and went from traditional doctor to traditional doctor exhausted everything they could offer me.
I was on so many medications and I just kept getting worse and then I was taking medications for the side effects of the medications which was getting ridiculous and when I did the gamut of everything that that traditional medicine knew to do and you know the best practitioner said “I’m sorry I’ve never seen anybody like you I don’t know what to do about this” and the worst told me I was crazy or told me that well my labs look normal so you can’t really be sick.
They thought I was attention-seeking and that was really devastating because I was working so hard to get well. I was cleaning up my diet and looking into all kinds of things and then I started with holistic medicine and did everything that I could find there. I tried homeopathy, and just in case I was crazy, I did 10 years of therapy that didn’t change my symptoms helped me get stronger emotionally and healthier emotionally that was a good part of my journey but it didn’t solve my health symptoms.
Then functional medicine started coming on the scene. So I’m in my 40s now, and I always say that because people think I’m like 25 or something, but you know I started with functional medicine and we exhausted what functional medicine had. I thought “oh my gosh”, I mean I was working with the best most experienced practitioner in my area it was before we had telehealth, so I didn’t have access to people outside of my area. I remember the day that he said “you know, we’ve tried everything we know how to do and you’re not responding. It’s not getting any better” and I cried the whole drive home. I could barely drive at that point, I was so sick and I went home with nothing. I was grateful he was honest with me but I thought “what else am I going to do?” “what am I going to turn to?”.
Chronic Hives and Low Histamine Diet
Beth: I’m still itching head to toe. I used to keep a flashlight by my bed and I think some other people can probably relate to this because I was terrified I had bed bugs. Like, I itched so badly and I would jump up in the middle of the night and check my mattress and checked my sheets and nobody could figure out what was going on.
I started taking Benadryl and other antihistamines and it would maybe take a little edge off. I tell you there were a few things that really turned it around for me. One was learning about histamine intolerance and starting to bring the histamine foods lower that and then that made a difference in the itching and the hives.
I had been doing everything to heal the gut and I was doing all those ferments and eating things like, I was making my own kefir, and I was making my own kombucha and my own sauerkraut and all those things. I ate lots of strawberries because of the antioxidants and I didn’t know about the histamine side of things.
Mast cell activation
Then I learned about mast cell activation because I only got so far with working on the histamine side of things. I maybe got about a 20 percent improvement in my symptoms, which was helpful, but there was clearly something bigger going on because I couldn’t control it just with diet and some of the supplements that help with histamine.
So figuring out the mast cell activation was a big game changer and when I learned about that and I was following Yasmina Ykelenstam who started she’s she was called Low Histamine Chef when she started and then Healing Histamine and she was a big part of my journey and learned a lot through her. She started reporting on mast cell activation syndrome and that all the light bulbs went off and oh my gosh it’s not just these isolated things, they’re all connected by these mast cells. Then I had to figure out, well why are these mast cells getting dysregulated.
I knew I’d had Lyme but I couldn’t tolerate any treatments and so I was so stuck but we figured I had mold toxicity that unraveled this whole picture and so many people are dealing with mold toxicity and dealing with mast cell activation and have no idea. Mast cell activation we know now from the population studies is affecting on the low end nine percent of the western population, maybe up to 17 percent. Some estimates now are saying higher than that. So if we think about how many, that’s at least one in 10 people that might be one at nine, we could be as high as one in eight. That’s a lot of people dealing with this it’s one of the most under-recognized and under-appreciated conditions affecting people with things like chronic itching, and the fact that most of the people dealing with chronic hives, chronic itching have other symptoms as well.
Sarah: Yeah, that’s one thing that I’ll look at the symptoms of mast cell activation, and I look at the symptoms that we experience, and I’m like “these are basically the same thing”. You know, they’ll say chronic spontaneous urticaria is basically just the degranulation of the mast cells and then you look at the mast cell activation syndrome is kind of the same. Yeah, all these things are clicking because I’m like, you know we just kind of collect these diagnoses and we see different specialists for different areas and it’s really interesting when you look deeper and you see that they’re all related.
The mold mast cell activation connection
I was watching in one of your Facebook lives about the mold probably a couple of months ago and I was just like “wow” like “check check check check I’ve got all these symptoms” and I took the test and I tested positive for almost every type and I was blown away because I’ve been working for years on this. As a lot of us have, you know trying different diets, different supplements, this and that, and then you know the long-term anti-histamines and kind of wondering how is that going to affect me in the long run? So that’s always been a goal of mine, just to get off of those. So it all just everything clicked and I’m so excited that you came to talk to us today because I feel like this will benefit a lot of people. It’s been a game-changer.
Beth: I mean, it was a game-changer in my own life and then I got well enough people were actually coming out of the woodwork because they say “I when I saw you a year ago you were hobbling with a cane and you look like you weren’t going to make it through the day”. and that just the amount of change every year that happened. Some people joke that I’m Benjamin Button because I look younger as I’m going because of getting all this inflammation down but it’s a huge game-changer to figure out the why and I got well to the point that I
went back to graduate school and I got my master’s degree and then I got a doctorate in traditional naturopathy and started consulting with people because people were just asking me “what did you do? can you walk me through it? ” and I thought, “well if I’m going to do this, I want to do it well and I want to do it right and I want to get the background in the training to help because not everybody’s just like me” but with the people, I’ve worked with, and I’ve worked with over 600 people at this point with complex issues of mast cell activation, and I do consulting and work with people who have gone from practitioner to practitioner. People aren’t able to figure out their case and then my job is to look at what stones haven’t been turned over what hasn’t been looked through what hasn’t been explored the mold toxicity has become epidemic.
Most of the people I see have worked with over 10 practitioners. They usually have multiple specialists like you’re talking about, and we need those specialists and we absolutely need those specialists for different kinds of situations that can arise, where you need that kind of in-depth look. But you also have to have somebody on the case who’s going to pull back and say “wait a minute, how is this all connected? How are these gut symptoms connected with the itching, with the hives, with the brain fog, trouble sleeping?” Because they’re not disconnected from our whole body. It’s kind of like trying to say “oh well my little finger has nothing to do with my thumb” but they’re all part of your hand, right?
What are Mast Cells?
Sarah: So how does someone know if they have histamine intolerance versus actual mast cell activation versus just chronic hives?
Beth: Yeah, that’s a great question. Maybe we should pull back even and talk about what are mast cells and what is histamine. So the mast cells, they are immune cells and they’re very important immune cells in our body. They’re in almost every single tissue, there are very few tissues that the mast cells are not in, so not in the retina but we have mast cells in the skin in very high numbers. In the skin, mast cells are anywhere your body meets the outside world, that’s how you can think about it. The lining of the eye,s the sinuses, the nose, the entire GI tract from the mouth all the way down to the esophagus, the stomach, the intestines, they’re in the lungs in the trachea they’re in all the lining of the blood vessels they’re in our spleen. I mean, they’re made in the bone marrow, we have some in muscles, they’re at every nerve ending.
So what that tells us is they’re very instrumental to our survival and these mast cells are quite complex. They’re some of the most complex cells in the body. They were first described in 1878 and every year there’s still new things being discovered about these cells. That’s how complex they are. These cells have hundreds of what are called receptors on the outside and those receptors are sensing what’s outside of them. So I think of them as the first sensing, defending, kind of like, our first responder cells in our bodies.
They have in them hundreds of different chemicals called mediators. There are estimates that there are over a thousand different ones, so that makes them very well suited to respond to a whole variety of things. So they’re going to respond to every molecule of air you breathe, every molecule of food you eat. They are also, remember, they’re in the brain, and the nervous system. They’re responding to stress, they’re responding to injury, they have roles in pregnancy, they regulate sleep-wake cycles, they have so many critical roles in the body. One of the primary roles is protecting us from toxins and pathogens, and then initiating the healing response when we’re injured.
So if you think about it, most people can relate to if you’ve cut yourself. You don’t get it cleaned out quickly enough, let’s say you’re working outside and it’s really dirty, and then that cut gets red and swollen. That’s the mast cells initiating a response and calling the other immune cells in. So, their big immune cell or immune system communicator, as well one of the mediators, and the most well-known is histamine. In the mast cells there are two other cells that make histamine as well one’s called basophils and one’s called eosinophils. The mast cells are the bigger player here for most people.
Then there is also another type of mediator that has become a household word you know or cytokines. They make cytokines and cytokines are just messaging molecules so we talk about a cytokine storm the mast cells are part of that response that over response. In normal people, mast cells should be responding to what’s happening. So you eat something you probably shouldn’t have eaten, it’s a little old, it might make you throw up so you get that out of your body, and then things should calm back down. Or if you get something on your skin that shouldn’t be on your skin it’s not good for you they’re going to start responding and helping clean that up and get it off your skin. If you get a splinter embedded they’re going to produce the inflammation to push that splinter out. What has happened though, is because the mast cells are there to respond to anything going on in our environment, if we think about how we were, I don’t know let’s go with 500 years ago, we would we lived in a completely different culture than we live in now. Absolutely unrecognizable. So, you would get your work done, you would have periods of rest. We didn’t have chemicals, we didn’t have factories, we didn’t have any of these things, we did have mold, and that’s important to know. We did have mold but we didn’t have electromagnetic fields, we didn’t have wifi, we didn’t have any other stuff, and there were genetic mast cell disorders, but this mast cell activation syndrome was not a big deal.
What’s happened is we are exposed to so many things now on a daily basis that trigger mast cells. So you think about just the level of stress that we have; financial, familial stress, everything about all the divisions this past two years, and all the stuff that’s going on for us, just on that stressor side. The amount of toxins just in our food and our water supply, the plastics, the fragrances, and candles that are hormone disruptors, and those plug-ins. All these things, our mast cells have to constantly respond to.
So what’s happened is, I think of them like the guards of your castle gate to keep you protected and safe, and they should be able to know the difference between “oh here’s the baker bringing bread in and that’s safe so we’re going to let them in” and “oh that’s an enemy we’re gonna keep them out we’re gonna launch an attack” If you were a guard at a castle gate and you had to be on guard 24/7 and you never got a break and there’s constantly things coming at you you know from ever having sleep deprivation you get wonky. Mast cells get wonky and they start over-responding and they get oversensitive so they’re going to respond to things they wouldn’t normally respond to. Not everybody, when they feed corn to chickens breaks out in hives, but I had already had so much toxin load both in utero, just generational, the food we didn’t have a clean diet growing up, we ate lots of processed food when I was growing up, and I was living this house full of toxic mold. So my mast cells were already getting dysregulated.
Histamine intolerance vs mast cell activation vs chronic spontaneous urticaria
Beth: What you’re looking for in terms of whether you have this or not, is do you have symptoms in two or more systems first of all. That’s one of the criteria, so if somebody’s only symptom is itching and hives, they only have skin symptoms, and truly nothing else; there’s no GI issue, perfect gi tract, there’s no brain fog, there’s no sleep issues, there’s no breathing issues, nothing, then that would not be a mast cell activation issue. You might have issues only with the muscles and skin, but it wouldn’t be called mast cell activation syndrome. So that would be your classic simply chronic urticaria.
But chronic urticaria is a symptom of mass activation syndrome and what makes it so hard is that people can show up in all kinds of different ways. So you could be like me where I literally had symptoms in every system, where I have some people who, they just have brain fog, they’re not sleeping well, and their guts are a mess, and maybe they have trouble with itching, or they have flushing. Ruddy cheeks are common, and flushing can happen with histamine intolerance or mast cell activation. One of the telltale signs and differences with mast cell activation and histamine intolerance is having symptoms right after eating, or while eating within about 30 minutes. Not everybody that gets that has mast cell issues, but if they have, that’s generally the mast cells responding.
This is where it starts to drive people crazy trying to figure out what they’re reacting to. It may not be a particular food, it may just be the act of eating is triggering them. You have, on the other hand, histamine intolerance is only when somebody has an issue with histamine. So they may have itching they may have GI issues, too much histamine can cause things like acid reflux, heartburn, loose stools, might have anxiety, might have some sleep problems, but it’s not going to be as severe and it’s not going to be as complex.
One of the main ways to distinguish is to lower histamine foods for about six weeks. See if it makes a difference, and then try to support some of the pathways. So you can take a DAO supplement, diamine oxidase. It breaks down histamine. You can take things that help the methylation pathway, that help with histamine.
If you have mast cell activation, a lot of times we won’t tolerate those methylation supplements. First of all, they generally have more sensitivities, not always, but they may have sensitivity supplements, to foods, to stress, may be hard to weather stress. They may have sensitivity to heat and cold, or vibration more. You’re getting into more of a sensitivity situation there. But really, the only way to tell is to first try to work on this the histamine side, and then see what you have left.
I did make, because there are so many symptoms that have been correlated with this in the research, I did take the research on the symptoms and made a symptom survey. People can get on our website if they want to check it out. It’s all free, and you just add up your total of symptoms. The more you have, the more likely you’re dealing with mast cell activation.
Sarah: Great, I’m sure that’ll be helpful. What’s your website again so everyone can go mast cell
Beth: mastcell360.com. Then if you just go under mcas there’s a symptom survey link.
Sarah: Okay, so is there any kind of testing for this that we should be asking our immunologists for, or anything like that?
Beth: It’s a good question. So, let me preface this by saying that although mass activation syndrome has been around for decades, the research only really picked up in the 80s and 90s and it finally got a diagnostic code in 2016. So, that tells you this criteria is quite new and there’s a lot of debate about it. You have two camps, one camp says that mast cell activation syndrome is still more rare, and one camp says that it’s very common.
The diagnostic criteria is missing. Most cases, from my own experience, and what I’ve seen in working with people, I’m in the latter camp. So I’ll just say that and I think this is much more common and we’re missing cases. But the the official diagnostic criteria is, we covered the symptoms in two or more systems, so it’d be like skin and GI at least, or heavy skin and you know somebody has a phlegmy cough, is common. Or like that throat clearing. You can have sinus symptoms anything like that reproductive symptoms, and then the second one is that there has to be an elevation in one of the mast cell mediators. So that could be a urinary histamine test, that could be, there are other things they can test for: prostaglandins, leukotrienes, there’s a number of them.
One of the misunderstandings that’s out there and you have to realize that this isn’t even taught in medical school yet. I have clients who are medical school students and they tell me they’re not they’re getting like a one-page synopsis of mast cells and they’re not even taught any of this information. So you can’t one expect unless somebody’s really specialized in this, for them to be able to even keep up with the fire hose of information that’s coming out all the time. But one of the misunderstandings is that tryptase is a marker for mast cell activation syndrome, it’s almost never elevated in mast cell activation syndrome, but a lot of people are being told they don’t have elevated tryptase they can’t have mast cell issues. That’s a distinguisher for the genetic mast cell issues but not what we’re talking about, and most people don’t have a genetic issue with this, it’s acquired.
The other problem with this testing, there are a few problems, one is that we’re only able to test for a handful of mediators and there are over a thousand. So, what if you don’t have a problem with those mediators, you have a problem with some of the 980 other mediators? The last problem with that testing is that it’s very hard for the labs to process those samples correctly. A lot of them have to be cold centrifuged, a lot of slabs don’t have that and the samples are generally not handled in a way that’s going to give you accurate information. So this is such a significant problem that the people who have to get insurance coverage for this will and they’re really dedicated to the testing and they understand the issues. I’ve heard of many practitioners who have their patients come in and they’ll be there all day. They’ll have them do a bunch of stuff to provoke a flare and they’ll test them every hour just hoping to get an elevation so that they can say that you know they can really give them this diagnosis and get insurance coverage. That’s a problem and when i talk with my colleagues what we’re seeing is only about 10 of people have any elevations and the mediators that are being tested that’s means we’re missing 90 percent.
The third part of that criteria is you have to have an improvement in symptoms with a antihistamine medication or a mast cell mediator. The problem with that one is that, other than cromolyn sodium and compounded ketotifen, every antihistamine or mast cell mediator medication available in the US has inactive ingredients that are mast cell triggering. So somebody may respond to the medication but then have worsened symptoms or no improvement because they’re reacting to the dye, or the titanium dioxide, the cornstarch, whatever else is in there. So you can see that this has a lot of room to continue to evolve and I hope it does keep evolving and I think it will but this is where we’re starting it’s got to start somewhere.
Mast cell activation treatment
Sarah: So what would the treatment be?
Beth: Well, there’s no single treatment and I should probably say that I don’t I don’t diagnose, myself, I do consulting. And I don’t treat. I don’t treat, diagnose, or prescribe, but I do a lot of consulting for people. The the real way of addressing this is to figure out why. What’s going on that’s causing it, and you want to look at, there’s a ton of stuff you can look into, of course,. People talk about parasites and talk about heavy metals and getting your gut back in balance and after having done this kind of work for about 10 years, I’ve been in this kind of consulting area, I can tell you there are three major things that affect the vast majority of people dealing with this.
Nervous System Dysregulation
One is nervous system dysregulation and that’s why I talked about the mast cells being at every nerve ending. There’s a constant communication between the nervous system and the mast cells, so it’s really fascinating the muscles actually have receptors for neurotransmitters and then the nerve endings have receptors for mast cell mediators. So the nerves are saying oh we’re in danger or we’re safe, and the mast cells are responding based on what the nerves are telling them. Then if the mast cells are are getting triggered they’re going to trigger the nervous system. So a lot of people deal with nervous system symptoms like can be anxiety, can be feeling wired, just chronically exhausted, brain fog, depression, sleep issues. This is important because one we live in a traumatized society and even people who think they don’t have any trauma if I ask, you know, I dig in and there’s something somewhere for a lot of people. We live in a really high stress culture so if you look at, for example, if we just compare one of the cultures that I’ve studied are they’re often called the tahara or the ramori is what they call themselves, they’re a culture in Mexico and they still live their traditional lifestyle in the in the mountains. They don’t have bills or money or any of these kinds of things. They don’t have television, they they grow the food they need to eat, they take care of each other, they share, and then they spend a lot of time resting. They also spend a lot of time exercising. They’re famous for runners, being long distance runners, and we we don’t live like that. We go go go, and if we think about how we just, you know, we just came off the holidays and traditionally the winter is a time for deep rest and deep relaxation, but our culture doesn’t really allow for that unless we fight to carve it out for ourselves.
So I say all of that to say that I have yet and over 600 people met anybody who didn’t have a dysregulated nervous system who had chronic illness. I’m not saying nobody doesn’t, there are people who don’t, but who have chronic illness so that nervous system side. What I have learned is at least 50 percent of the healing process and that’s things like balancing what we call the limbic system in the brain that monitors safety and the vagal nerve, which is a whole complex that is really critical and this is has a role in chronic hives. So there’s studies that look at the role of itching is this interface of the nervous system and the mast cells is what’s going on there. So if we want to calm it down we actually need to work on both angles and that’s why just the antihistamines weren’t getting rid of the hives alone for me, I had to combine that and had to really settle my system down. I was kicked in the head by horse when I was kid and that was a major brain injury and I had these car accidents and different things that were very jangling for my nervous system. So that’s one big one, is the nervous system, and that’s a great place for people to start because you can start incorporating 15 20 minutes a day. There’s a great Buddhist saying that I love that says “everybody should meditate 20 minutes a day, unless you don’t have time, and then you should meditate for an hour.”
Because it’s an illusion that we don’t have time. I mean, I have people who are CEOs and have six kids and they figure out how to carve the time out for themselves and it it’s a game changer. I have a course on that if people aren’t sure where to start.
Chronic hives and mold
Beth: Then the other two big ones are mold toxicity and lyme and I think the reason that we have such a Lyme epidemic is because of the mold epidemic mold dysregulates our immune system so much we can’t fight off bacteria and viruses like we should. I think it’s a big issue with this just rise of viral issues we’ve had the last couple years but the mold is a bigger issue than it was when I was growing up 40 years ago.
I had a you know bad luck of the draw in an old over 100 year old farmhouse. Most people don’t grow up with that kind of exposure but what’s changed is the amount of chemicals we’re exposed to, that’s kept ramping up. We build houses tighter, so there’s less air flow, traps more humidity, and then I’ve spoken to people who are some of the top mold inspectors in the country and asking what is going on. Just in my period of time I’m seeing this escalating and I talked to my colleagues who’ve been working for 40 years they’re seeing it escalating. They’ve told me the other big factor has been the wi-fi that we brought in, the EMFs that we brought into our homes. They’re seeing mold growing faster and producing more mold toxins, but we’re not going to get away from EMFs. So we have to start shifting our lives to deal with that.
We bought a house two years ago. We took over six months of looking to find one house that didn’t have a major mold issue and we still had to do some remediation. We looked at over 50 houses. The only places I’ve seen people not have mold in their homes who have chronic illness, I’m not saying every house does, but people have chronic illness that I’ve worked with, only places I’ve seen mold not be there has been Arizona, New Mexico, Utah.
******We’re from the lake you know those really desert areas and mold is um just the biggest root trigger. When people can get rid of mold, their bodies recover. They can usually, about 30 40 percent of people will recover from Lyme on their own. That was my case, I never treated it. And then the other the other percentage of people can tolerate the treatments at that point they can finally kick it. It’s the same for SIBO and for parasites.
So that’s why I don’t put those as the primary root triggers because if you’ve got mold you can’t get the gut back in balance, you can’t get the hormones back in balance, you can’t fix sleep. Mold just keeps dysregulating all of it.
Mold and hormonal imbalance
Sarah: That’s a really interesting point because I know a lot of us do see functional medicine doctors. A lot of times you know we’re working on the gut, you know, eating those ferments as you mentioned and you know like I have high estrogen and gut issues and this and that that I’ve been working on for a long time and it’s like it just never gets better. So you know when I took that mold test I was just like “wow this could be causing all these things that I’ve been trying to work on and haven’t been able to fix”
Beth: Yeah, mold disrupts that. I’ve got just piles and piles of research on this. It disrupts the hormone balance, disrupts the nervous system signaling, it disrupts the whole GI tract because as part of our detox, mold is dumping into the gut. Those mold toxins, they’ve used mold toxins, specific ones, for chemical warfare. I mean, we have to realize how toxic these really are. Then mycophenolic is one of that’s used in chemotherapy, it’s one of the most toxic of the chemotherapies. So when we think about chemotherapy the real goal is to try to kill the cancer off before it kills you off, that’s how toxic it is.
One of the things to tie this back in with the skin is, so these mold toxins, they can come in through our skin. We can absorb them through the skin. We breathe them in, they can land on our food, get in there our drink, if we’re in a moldy environment. So you can have mycotoxin toxicity, then another layer of that is if you actually ingest the spores where they’ve landed on food, they’ve landed on drinks, you’re breathing the spores in, people don’t usually get fungal infections in their lungs but the gut is really common, in the sinuses where you breathe it into the sinus is really common. Then it’s growing inside of you just like bacteria can grow inside of you, viruses can grow inside of you, and about 70 percent of adults with mold toxicity are colonized. They have it growing in them. When it grows in us it’s producing more toxins as it’s growing. So even if you get to a clean environment you’ve got to kill that mold off in your body to stop this increasing levels of mold toxins in the body and the skin is our largest by size detox organ. So we think about detoxing with the liver and then it gets dumped into the urine and into our bowel movements we pass it that way but we also pass toxins through the skin and I’ve had people clients of mine who came in and their skin was peeling off in sheets from both the amount of toxins and then they had actually gotten colonization on their skin because their skin is just starting to break down so much. So that’s a game-changer if you get rid of these toxins getting excreted through the skin and you stop these spores from continuing to produce these toxins. I don’t have any itching anymore I don’t have any hives I don’t remember the last time I’ve had hives, actually i do, I had been gluten free for a very long time it was my husband’s birthday and we were scuba diving and the boat we were on, they had made a banana cake for him and I really wanted to try it and it had wheat and I ate it and I broke out in hives and eczema on my arms. So that was my” okay I’m done with wheat probably forever” for me but I don’t deal with those things anymore with getting this stuff handled and out of my body, it’s a game-changer.
I will say though that the final goal is ideally for people to be able to come off of those antihistamines or mast cell meds but if people are doing mold detox I just really want to encourage people to stay with what’s stabilizing their mast cells, because I’ve had so many people who, they started feeling better and then on their own they made a decision that they were going to stop taking that stuff and they flared just massively. It set them way back, so you want to stay on what’s keeping you stable until you get that mold out of your body and you’re on the other side of it.
Chronic hives and mold detox
Sarah: Right. Okay, so what would that look like then? The whole mold detox? What does that entail?
Beth: Yeah, it’s a process. so first you want to know which mold toxins you’re dealing with. My preference is different ways of testing my preference is to use the urine tests and Real Time is the first one that I use. Then if somebody has the budget for it I also use Great Planes, they have really good tests, and there’s one by vibrant that is going through some evolution. I haven’t seen consistency with it and the other tests so I haven’t used it right now, but some people do like to use that one. There are ways of testing for antibodies and that’s a whole different system of looking at it. I haven’t found it as helpful as in terms of guiding an approach, but it’ll show you if you’re having immune reactions to those. It’s just never clear if that means present or past. So, all that to say, you’ve got these different testing options. I found the urine to be the easiest to follow and to work with and to guide what to do.
I was on a research team with Doctor Neil Nathan who’s a wonderful person to put on everybody’s radar if you’re not familiar with him, and he’s my mentor and a friend of mine, and worked with him Emily Gibler and Joe Mather and a group of us really came to research. We were talking weekends and weekends of going through all of these papers to map out which binders work best for which mycotoxins based on what we know right now, and that’ll keep changing, but what we know right now and what we found is that they don’t bind equally. So when we’re talking about binders, we’re talking about things like activated charcoal, bentonite clay, chlorella, there’s a type of fiber called propylmannon that can be used, and there’s prescription binders like welchol and colesevelam, and saccharomyces bilardi, that’s a beneficial yeast also will bind aflatoxin gliotoxins uralan but it doesn’t bind, for example, okra toxin as far as we know.
.So we want to have that testing so that we can see which of the binders are going to work for which molds this person has. These chemical structures for these mold toxins are very complex. So if anybody’s taking chemistry and you remember seeing a molecular structure actually have lots of facets and sides. So you want to use as many different binders as you can tolerate to most effectively bind up that toxin to help your body move it out. If somebody only has mold toxins, that may be all they need and maybe a little bit of detox support. So another big thing that we worked on with these research projects was, Emily Gibler and I mapped out which detox pathways in the liver work for which mold toxins, and that was huge because we were looking a lot at glutathione but it’s not used very much for molds. There’s a pathway called glucoronidation that almost never talked about but that gets supported with things like calcium deglucoreate and dandelion pterostella bean which comes from a type of wild blueberry. These kinds of things support that pathway. Rosemary supports that pathway and most mold toxins need that to get processed in the liver, not glutathione. So that may be enough if that’s all somebody has, then they had short exposure and they weren’t that sick.
But for those of us that had a lot of exposure, we have the colonization, then we have to go on and do an antimicrobial phase and that can include herbals. Then most people end up having to work up to some kind of prescription antifungal.
Sarah: Okay so that sounds really complex.
Beth: Probably, you want to be guided. It’s really helpful to work with somebody who knows this area who can help support. I did put also a course together on this because it is so complex and so I put the course together. It just steps people through the very beginning, the testing, how to get your testing back, how do you look at it, how do you pick your binders, how do you pick your phase two supports, and then in the advanced level I go into the prescription anti-fungal options, how do you stabilize your mast cells while are you doing all that. So it gives people the whole roadmap. It may not get them 100 percent of the info they need because some of it is case by case, but at least gives the really solid foundation where people can get going on that because you can’t put it together on your own. I spent three years solid putting that course together.
Sarah: Wow. Yeah, it’s really comprehensive. I actually did take that course and I learned a lot. I was blown away and I’m not real sciencey, you know. I mean, it interests me because, you know, obviously it affects me, but you know maybe it’s the brain fog, I have a really hard time picking out those more technical things. So I really liked how you explained everything. It was very helpful.
Beth: Thank you. Yeah, and that’s where I made the workbook, so people can just put down for themselves what their stuff is, what they need to do. I remember what was like to be in brain fog and like I couldn’t read a book .
Elimination diets for hives
Sarah: Yeah, it’s definitely a struggle. So what about, I know we’ve only got a few minutes, just real quick about diet? Because I see a lot of people who, you know we’re all different, and we all react to different things, but they’ll follow these lists you know and then they get confused because there’s so many different lists. Some people they pare themselves down until they’re down to you know chicken and rice. I’m not a doctor or a nutritionist, but I feel like they’re kind of doing themselves a disservice. So can you talk a little bit about that?
Beth: Yeah, that’s a great question and it’s a it’s a hard road. So I was in the same boat, made the same mistakes and I got down to about 10 foods if you didn’t count salt, pepper, seasoning.
What was going on for me is that sometimes I would eat and I’d be fine and sometimes I would eat something and the itching would explode, the sleep, my insomnia would be so much worse, my anxiety would be so much worse, I’d be running the bathroom all day. So I started keeping a food diary, but here’s the mistake that I made was: instead of looking for big general patterns, I was looking for every single food that seemed to be a trigger, and then I would pull it out. I think, and I’ve worked with a lot of people who were down to two foods five foods, and that’s the consistent theme, is what we’re doing is we’re getting too far into the weeds. What I learned from that is that one mast cell activation people can just react by eating, and it doesn’t matter what you’re eating. It could be chicken and rice today, it could be pork and quinoa tomorrow.
The key with the food journaling is to look for the bigger patterns, and some of the biggest ones for people, and the ones that I look at the most are histamines, lectins, a protein in some foods like quinoa, and other grains, corn, wheat and they’re going to be in things like tomatoes, eggplant, squashes, all that. Then salicylates can impact people. It’s more common in mold toxicity, oxalates. Oxides can trigger the skin so this can trigger itching, and fodmaps can trigger gas, bloating, diarrhea, constipation. So you look at the symptom profile and then I encourage people not to try to reduce all of that at once, because you can get into this downward spiral. I’ll tell you, the most dangerous one for people to pull out are the sulfur foods. If people do have to go low sulfur-like for gut issues, need to be taking Epsom salt baths if they can at all tolerate them, even if you can only do a teaspoon, gotta get some sulfur back in because we can’t live without sulfur. It’s gotten this bad wrap online but our mast cells use sulfur to stabilize themselves. They make something called heparin sulfate that’s the primary stabilizing mechanism, plus we use it for detox, we use it to process oxalates. People usually feel better for a few months and then they’re in big trouble.
Low histmaine diet for hives
Beth: So, generally, if I’m just thinking about somebody who’s dealing with itching, they’re dealing with hives, maybe have a few other symptoms, I’m probably going to suggest trying low histamine and just seeing where that gets you for six weeks and then if there’s autoimmune issues, if there’s any cancer history, joint pain, burning, cardiovascular issues, then it might make sense to also try lower lectins and just see where that gets you. I do have some people who’ve had to be low in all of those, and the key is to find as much variety as you possibly can eat and to eat as many different herbs. So even as somebody who has to eat low salicylate, cilantro if they don’t have that soap gene, they can eat cilantro. Herbs are some of our highest antioxidant foods so they can have cilantro they can have chives, onions if they can do onions. One of my mottos is to not keep whittling down but to replace. So think about if I’ve got to pull out strawberries, I’m going to because they’re high histamine, I’m going to put in blueberries and raspberries. The other thing I want to say on the foods is that it is a wild west of food lists out there and there are unfortunately a tremendous amount of mistakes. I see histamine lists that allow walnuts but walnuts are high histamine, not all nuts are high histamine but walnuts are. Or I see lists that say well these foods contain histamine but then they allow fresh fish from the grocery, but fresh fish is one of the highest histamine foods., so because the gut has, the guts are still in the fish, and you get this bacteria build up. Or they might allow histamine liberators like cinnamon, and having made a number of different types of foods lists, we have a three-person review on these things. It’s so hard, and we’ve had a couple of mistakes slip in there that we had to fix. But you want to make sure you’re using a really good list so if you’re doing histamine Janice Joneja is an expert in this area, healing histamine has really good lists, we have a really good reference list. Just make sure, I mean I’ve even seen lists that allow like coconut aminos, but they’re fermented, so it doesn’t make sense. So you just gotta watch, make sure you’re getting good info as well, otherwise, it’s so confusing, you have no idea if you’re really low histamine or not.
Sarah: Yeah, it’s definitely confusing and I think a lot of people get overwhelmed and I know for myself I actually for years considered the low histamine diet, but I was so overwhelmed that I just kept putting it off and putting it off because I thought it was too complex, meanwhile I’m drinking kombucha. So I’m really glad that you shared that and I do usually share your list, I like your list.
So when you so you said start with the low histamine diet for six weeks, so then are you reintroducing before you then cut out the next group of foods?
Beth: Yeah, that’s a great question, kind of depends. So when I’m working with somebody, I evaluate, I also evaluate their bandwidth and how much can they handle and how challenging is this for them. But the simplest way to do it is to try six weeks. Do a really good low histamine, we have lots of low histamine recipes. I’m a foodie so I had to find all kinds of ways to have enjoyment doing this, and you can get a lot of variety, you just have to be a little more creative. But try for six weeks, document what’s happening because it can be hard to remember when we have a lot of symptoms, what it was like six weeks ago versus now. See if you’re getting any improvements and then give yourself a day of eating fairly high histamine. So that might look like having some canned tuna or canned salmon, having some strawberries, some pineapple, kombucha you know, having some fermented sauerkraut, things like this, and then see what happens with your symptoms. If you get this big elevation in symptoms, and it may be up to three days later. It can take people up to three days for this that histamine that you ingested to get dumped into your bloodstream, and this is just as an aside part of the waking people have at two to four am is that’s sometimes called the histamine dump because that’s when your histamines your body’s been processing all day dumps into your bloodstream, or it’s been storing all day dumps in your bloodstream to then get processed by your liver. So watch for that as well, like that two to four am waking or are you waking up all night long.
Histamine regulates sleep as well and then if that made a difference and you’re doing better lower histamine then you could stay just lower histamine and try layering in what is the next suspicious thing. So it might be lectins, for example, but I wouldn’t try to do it all at once, it’s hard.
Oxalates
The other thing I just really want to share with people is if you’re looking at oxalates do not drop down oxalates cold turkey because oxalates work very differently than these other things we’re talking about. Oxalates are crystals that are in things like spinach, sweet potatoes, beets are super high and that was my joint pain, where I was using a cane to barely hobble, it was like walking on ground glass, it is awful. But those crystals, when you lower your oxalate foods, those crystals are going to come out of the tissues into the bloodstream and you can trigger kidney stones if you go down too quickly. So you’ve got to take that down really gradually over at least six months, better like a year, and make sure you know what you’re doing there. So don’t stop oxalates cold turkey, that’s dangerous.
Sarah: Okay, that’s really it’s really good to know. I’m glad that you mentioned that.
So I thank you so much again for all the information that you provided in your blog it’s just so helpful. I’m always referencing your blog, I’m always looking at it, I’m always referring people to it. It’s so comprehensive and like I said, that’s just so helpful. I really appreciate you coming to talk to us because I know that’s going to help a lot of people.
Beth: Thank you, Sarah. I’m so glad, and you know, for me, most of my life up until about five years ago was honestly a nightmare. So if I can take what I went through and help people with it and they can improve and we can just get one more person not have to go through that alone, that makes it worth it. So I also want to thank you for letting us get this information out and everything that you do to help support people as well because I know how hard this is.
Sarah: Thank you so much
Conclusion
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