MCAS and Histamine Intolerance, From Symptoms to Support

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Transcript

Melanie: Welcome to Dishing Up Nutrition, brought to you by Nutritional Weight & Wellness. Today we're talking about a topic that has been getting a lot of attention lately, mast cell activation syndrome and histamine intolerance.

And whether you are personally dealing with these conditions or these are foreign conditions you never heard about, we're going to talk about it in, in some detail, and hopefully if it's something you're struggling with, we will be shining a light on that so it will lead you on the road to a little bit more normalcy in your life, because these conditions can significantly affect your quality of life, and they can leave you feeling frustrated, both with the medical community, with not being able to figure it out.

Possible symptoms of histamine intolerance

You can feel overwhelmed, "What do I eat?" So if you're new to this topic, I want to give you a little context of what it is like when you have histamine intolerance. Okay, let's say you just finished a meal, and suddenly or, or maybe a few hours later, you develop symptoms like flushing or itching with a rash or not a rash.

You just are itchy. Maybe you get a headache or nasal congestion, heartburn, racing heart, sometimes rapid heartbeat and difficulty catching your breath, or even flushing diarrhea. It could be you're experience a histamine reaction. Not necessarily so, but that's a possibility, right?

And if you've searched these symptoms online, you've probably encountered two terms over and over again, which is confusing everything even more, which is histamine intolerance and mast cell activation syndrome.

Britni: Yeah, Dr. Google.

Melanie: Dr. Google.

Britni: It can, lead you all sorts of ways, but the terms histamine intolerance and mast cell activation syndrome, they are often used interchangeably, but they're really not. They should not be used interchangeably.

Melanie: They shouldn't be.

Britni: They're related, but they are not the same thing.

Melanie: They are ugly cousins.

Histamine intolerance vs. mast cell activation syndrome

Britni: That is one way of putting it. Yeah. Histamine intolerance generally refers to your body having difficulty handling histamine, particularly histamine coming from food. MCAS, as we will call mast cell activation syndrome, on the other hand, involves inappropriate or excessive activation of mast cells, which can release histamine along with other inflammatory mediators.

And importantly, MCAS is, it's a medical diagnosis, so it's going to require specific clinical and laboratory criteria, and it's j- it's not a simple diagnosis that you can make yourself because you feel better eating low histamine.

Melanie: Right. It can be confusing- Maybe you just have a histamine intolerance.

Britni: Mm-hmm.

Melanie: It's hard to say. They, they look the same, they feel the same, but, they're a little different mechanism of action. So today we're going to break down what is histamine, what causes problems with histamine clearance, which foods tend to be the biggest culprits, and how to live with these conditions, because there is life with a histamine intolerance.

But before we get started, I'm Melanie Beasley. I'm a Registered and Licensed Dietitian, and I'm here with Britni Vincent, and she's also a Registered and Licensed Dietitian.

Britni: Well, let's start with the basics. What exactly are histamine intolerance and mast cell activation syndrome? Well, histamine is a naturally occurring chemical messenger in our bodies. It's involved in the immune system, digestion, stomach acid production, and even communication between cells.

So you may have heard of histamine, you know, in the context of allergies, antihistamine medications like Benadryl, but it's also one of the major substances released when mast cells become activated.

Melanie: Okay, so mast cells are immune cells found throughout the body. They're everywhere, especially in areas like the skin, the respiratory tract, your gastrointestinal tract, and in blood vessels, so pretty much everywhere. And when mast cells are appropriately activated, for example, during allergic reaction, they release histamine and other mediators.

The problem in mast cell activation syndrome is an overreaction of excessive mast cell activation resulting in reoccurring symptoms that can affect multiple organ systems. MCAS is often mistaken as simple histamine intolerance, and the difference between the two is that when a person has MCAS, their mast cells secrete many mediators, not just histamine. Like, calm down-

Britni: Mm-hmm...

Melanie: -is, is what you think.

Britni: Big overreaction.

Melanie: Big overreaction. Yeah. Though a histamine release is still a major component of MCAS, it's only a piece of the puzzle. There's so many other things that are going on there that have to be addressed.

Britni: So it could look similar on the outside, but what is happening on the inside is really quite different, basically.

Melanie: Yes.

Britni: And I think this distinction between the two is very important. Histamine intolerance, it's generally a problem with the balance between histamine exposure and the body's ability to break it down and clear histamine from the body, whereas MCAS is a release problem where the immune system inappropriately releases histamine and other inflammatory chemicals throughout the body. So again, that overreaction.

Mm-hmm.

So someone can experience histamine-related symptoms without having MCAS, and someone with MCAS may react to things other than food that contains histamine because mast cells can be triggered by many different stimuli, like infections, even a virus, insect bites, temperature changes, environmental chemicals and, and odors. You know, many people with MCAS might react to just daily smells like exhaust fumes.

Melanie: And we, we're not talking, "I don't like it." Yeah. We're talking they have a physical response where they have to leave the room.

Britni: In MCAS, the physical response, it can be life-threatening, right?

Melanie: Yes. Many people have ended up in the ER with vomiting, diarrhea, respiratory problems, and they are given, you know, an IV of something that calms down that mast cell reaction.

Britni: If you're listening and you're resonating with this, that could potentially be a distinction. If you are somebody that has this very strong reaction to these environmental factors, that could lead you to, to asking, finding somebody to get a diagnosis.

What causes histamine intolerance?

Melanie: And you want somebody who's an expert. Well, as for what causes histamine intolerance, there isn't one single cause that's been established, and this is the frustration for a lot of our clients who have histamine intolerance. You can't go to the physician, the doctor, your primary care, an allergist, and just be diagnosed.

There's no test. So possible contributors include reduced DAO, which is an enzyme that breaks down histamine. It can be certain medications. It can be gastrointestinal problems. It c- there's genetic factors, possibly changes in the gut microbiome, but stressful events or hormone imbalance can trigger histamine intolerance.

So that's really muddy. That's something that's really hard, and research is still evolving. There really isn't currently one universal accepted lab test that definitively establishes histamine intolerance. Sorry. That's frustrating. It's hard. And so since testing isn't a simple way to diagnose, we're going to talk about some clues that histamine intolerance is an issue, and then how you can get some relief.

Britni: And it, you know, it really can be surprisingly broad. Symptoms that have been associated with histamine intolerance include flushing, itching, hives, headaches, migraines, nasal congestion or runny nose, sneezing, abdominal pain, bloating, diarrhea, heartburn, vomiting, rapid heartbeat or palpitations, low blood pressure, dizziness, and, and sometimes respiratory symptoms. And of course, the challenge is that these symptoms aren't unique to histamine intolerance.

Melanie: And you may not, you might have two of these.

Britni: Sure. Yeah.

Melanie: You might have one of these. You might say, "Well, I really don't itch." Yeah. "But I have got this heartburn I can't figure out." I've done everything I know to do." It might be, " My scalp itches all the time, and I get diarrhea when I eat these certain foods that are supposed to be, “healthy”. So you feel like an outlier, you know?

Britni: Takes a little detective work.

Melanie: And many other conditions can cause the same symptoms, but if I have a client who comes in that checks a lot of these boxes, I'm thinking, you know, there may be a histamine problem. But we're going to start with the basics of just cleaning up the diet. Sometimes just cleaning up the diet, removing some inflammatory triggers, is enough.

And with MCAS, symptoms can involve, you know, multiple systems at the same time. For example, someone might experience flushing and hives, along with gastrointestinal symptoms and cardiovascular, respiratory symptoms. They're like, "If I have a glass of wine, my face turns bright red. I feel super sick. Everybody else is having a good time, and I'm over here in the corner dying."

So it helps to track those patterns of reoccurring episodes and specific symptoms, and what's going on in your life. You really have to be your body's detective.

Britni: Yeah.

Melanie: And to note what's going on in the environment as well. So I have a histamine intolerance, and when the mold is super high in the summer, I'm triggered much more easily, whereas I can eat some of those foods in the winter no problem.

Britni: Sure.

Melanie: So, it's ... it can be a lot. And so seeking medical professional help is key with MCAS. Just make sure that they are familiar with this type of diagnosis. Otherwise, you're just going to be frustrated. Many, many allergists are much more familiar with MCAS than just your regular primary care.

Britni: That's a great recommendation. And, you know, before you make an appointment, maybe you even just pick up the phone and call and ask the office if they're familiar with this, do they work with patients that have it?

Melanie: Save your time.

Britni: Yep.

Melanie: Save your time, because if they don't, somebody is out there who does. And they'll be in your insurance plan. You just, takes a little work.

Britni: Yeah. Unfortunately. And I also want to mention there is a strong connection between a condition called Ehlers-Danlos syndrome, EDS. So, many individuals that have hypermobile EDS also have MCAS. So if you are listening and you have that diagnosis, you may just want to listen and, and think about if, if these symptoms relate to you as well.

Melanie: Especially if you're feeling unwell.

What to eat & what to avoid for histamine intolerance

Britni: So let's get to the big question we address as dietitians. If you suspect this could be you, what should you be avoiding and what do you eat? The problem is histamine content can vary dramatically from one food to another, and even within the same food, depending on how it was prepared, when, or Melanie, like you said, the time of year you're eating it.

Melanie: Mm-hmm.

Britni: So there's a lot of factors going on here.

Melanie: Yeah. And to add to that difficulty, many people vary on what they tolerate. In general, you know, aged, fermented, or slow-cooked foods, they're high histamine. So a low histamine diet can be beneficial to both MCAS and histamine intolerance, so the diet is very similar for both.

Some of the foods most commonly associated with higher histamine levels in them is going to be fermented foods, aged cheeses, cured and fermented meats, smoked and canned meats, fish, canned fish, fermented vegetables such as sauerkraut, alcoholic beverages, particularly wine and beer and ciders because they're fermented.

Certainly fermented condiments like balsamic vinegar, soy sauce, fish sauce. You know, in general, foods that are higher in histamine are items that naturally contain significant histamine levels, and they're aged, cured, or fermented products. So we were seeing a lot more people, once the fermented foods are trending, the bone broth is trending, because these are high histamine, slow-cooked, fermented foods.

Britni: Yeah.

Melanie: The, all of a sudden people are like, "I should be eating this, but I feel horrible." so then there are histamine liberating foods that trigger the release of histamine in the body, if you weren't confused enough.

And these are citrus fruits, spinach, tomatoes. There's a host more that are liberating, meaning they encourage your body to release histamine, but they in themselves are not high in histamine. Either way, you just want to avoid them. And there are enzyme inhibitors. Remember we talked about DAO, which is diamine oxidase, that is, breaks down histamine.

Well, there's actually foods that inhibit the production of this enzyme, so that's a double whammy. And those are substances like alcohol, certain preservatives, and they block the body's ability to make that DAO.

Britni: And of course, this is, this is where it gets really confusing because your body may have a unique reaction as far as which foods are safe versus unsafe foods. And again, this varies from person to person, potentially the time of year. There's, there's a lot of factors here. The time of where you're at in your menstrual cycle.

Melanie: Yes, good point.

Britni: So fermented foods, you know, this is one huge category, as you were just saying, Melanie, that they are pretty consistently restricted, right? They're going to be a big trigger. And this is where, you know, digging into this, figuring out what works for you as an individual, this is where working with a knowledgeable dietitian makes a huge difference because googling... When I first talk to a client about this, I say, " Don't google this” right away.

Melanie: That’s good advice. There are so many lists that contradict each other.

Britni: It’s overwhelming.

Melanie: I purchased a book, a recipe book, and there were horrifically high histamine foods in the book.

Britni: Oh, that's terrible.

Melanie: So just trust us.

Britni: Yeah.

Melanie: When you want help, let us help you. Because there are a thousand apps, there are a thousand lists. The lists are different, the books are different.

Britni: Mm-hmm. Mm-hmm.

Melanie: It's so overwhelming, it makes you want to weep and cry. So rather than thinking, you know, a food is permanently forbidden, it's often more useful to think of it in terms of what can I be eating to nourish my body, to feel really good, so and how do I prepare the food?

So you may be thinking, "Can I ever eat these foods again?" Maybe, maybe not. It really depends on the individual. At one point in my histamine journey, I was down to eight foods that I could eat.

Britni: Wow.

Melanie: Significantly better now.

Britni: That's wonderful.

Melanie: But I've seen clients where they just become so afraid to eat-

Britni: Yeah ...

Melanie: -that they become almost food phobic. And food is the enemy, and they're losing so much weight. They become malnourished. They're surviving on chicken and rice. So we want to say, yes, we can broaden what you're eating, definitely, and, and keep you nourished.

Britni: Well, it is time for our break, and we will be right back.

Overviewing the “histamine bucket” concept

Melanie: Welcome back to Dishing Up Nutrition. Today we are talking about mast cell activation syndrome and histamine intolerance, and what is the difference, what can you eat, how do you recognize it? And one of the things I want to mention about it is that histamine fills up like you're filling up a bucket. So the bucket concept is maybe the pollen is really high that you're allergic to outside.

Well, that contributes to your bucket. And maybe you went to someone's house, and they had a chili, and you had some of that chili, and the chili was high histamine with the tomatoes and the leftover ground beef, and, and that raises your bucket. And then you have a stressful event with your child at home, boom, you're having itching, hives, diarrhea, and heartburn because your bucket spilled, right?

It's so full it overflows, and you get a symptom. So the goal with a low histamine diet is to keep that bucket from filling up to the place where you're symptomatic and to keep you comfortable.

And you mentioned hormones. So when estrogen begins to rise, histamine rises. So if you're someone with estrogen dominance or you really have struggle with periods, right around that time, you're like, "I, I was fine when I had a little bit of this food before.

Maybe I had a slice of bacon, no problem." Mm-hmm. But now your estrogen's really high, and you have that slice of bacon, and you're miserable. So it's that bucket mentality of I want to keep the bucket low.

Britni: I think that's super helpful to think of it that way. And to figure out your own bucket and what contributes, it really starts with, you know, an elimination diet. So eliminating the high histamine foods, eliminating the histamine liberating foods for you to then be able to methodically figure out-

Melanie: Is this a problem for me?

Britni: Yeah. And what's, what are all the pieces that are contributing to it?

Melanie: You know, and your, your tolerance, like we mentioned, can change. If you are sick, it's going to produce more histamine. Your body's not able to break down histamine. Like, there are several things. I had a client, she came to me and she'd had a rash all over her body for 10 years. And from the time she was diagnosed with celiac disease, she started this histamine intolerance because her gut health wasn't good because she had undiagnosed celiac disease.

Well, because of that, she developed a histamine intolerance, and so her symptom was rash and, horrible rash. You know, when we say rash, you think of a little itchy patch. No, this was head to toe miserable, horrible rash, and we put her on a low histamine diet, and she followed it strictly. She was desperate, and first time in 10 years, she didn't have a rash.

Britni: Oh, that is amazing.

Melanie: So-

Britni: Life-changing...

Melanie: The work begins once you have that firm this is a thing for me.

Britni: Mm-hmm.

Melanie: Because we don't want to just rest there. We want to get to the place where we are healing to a place where you can start introducing foods again.

Introduce a low histamine diet to lower histamine bucket

Britni: Absolutely. In the early days of trying to help a client with histamine symptoms, you know, we start with a low histamine diet and have them avoid both high histamine foods as, like I mentioned, those histamine-liberating foods. So the goal is to get them some relief as fast as possible. I mean, that's always our goal with our clients.

Melanie: Always our goal.

Britni: We want you to feel better as fast as possible.

Melanie: And once we get them comfortable, you know, a piece of that is there's, you know, like you mentioned, high histamine foods, histamine-liberating foods, but you can make a low histamine food a high histamine food. So food preparation is a big deal, and leftovers, if you think of histamine as something that spoils food, so the longer the food, the more the histamine.

The longer it sits, the more the histamine. The faster the food spoils, the more rapidly it builds histamine. So meat and eggs and fish spoil much faster than leftover broccoli. So the leftover meat, fish, eggs, these are things that need to be frozen immediately after cooking, or consumed. So it, it's not something you want to sit around.

You don't want to meal prep. I don't even, you know, in the worst days, I don't meal prep something in the morning to eat at dinner. Like, that just isn't, wasn't a thing.

Britni: And if you're cooking meat, you want to avoid slow-cooking them, right?

Melanie: Good point. No crockpots.

Britni: Yep. 

Britni: Pressure cooker

Melanie: Instant Pot is your friend. Yeah. Yes. I remember making salmon salad and, I couldn't have canned meat, so I would cook the salmon. I wanted a salmon salad, because ours in our recipe book is so good. So I would cook the salmon, shred it, put it in the freezer to cool it off, chop up the egg, the mayonnaise, the herbs, the spices, toss it all together, and ate it immediately, and that's how I made the salmon salad.

Britni: So there are ways.

Melanie: There are ways, and I have, I have to say, I have mastered so many ways of eating. 

Britni: I love it.

Melanie: Because I like to eat.

Britni: Yeah. You know, I have a client who we recently started a low histamine diet, and- She is enjoying this process because it's actually challenging her to cook different things, and she got out her Instant Pot again. So she's feeling better, but she's actually enjoying the cooking process of it all. And trying different foods, and yeah, so it's been a win-win for her.

Melanie: I love that. The beauty of discovering when you have a histamine intolerance or you have a gluten and dairy allergy, or you have a candida overgrowth, whatever your diagnosis, it makes you tighten up what you're eating, and you start eating healthier.

Britni: Yeah.

Melanie: So longevity improves. Disease processes become something that is much lower risk for you, and it spills, if you're cooking for a family, it spills into your family life, into a place of they're eating healthy. So it's not the worst thing in the world to have to make food from scratch.

Britni: No.

Melanie: No. I mean, I make food from scratch at every meal because that's how histamine intolerance rolls. But there are shortcuts. There are easy things you can do. Like you said, the Instant Pot, it's your best friend, because you can take a frozen roast.

You can take a frozen pork roast, a frozen chicken, throw it in frozen, cook it from frozen, eat the meat or freeze the meat, either way, and, and you can do it. You can't go get a rotisserie chicken because it's sitting there cooked.

Britni: So it, it takes more thoughtfulness.

Melanie: It does.

Britni: More preparation. But, you know, like you said, there's some shortcuts. I mean you can make a lot of meat at one time, and just pop it in the freezer so it's ready to go.

Melanie: So it's ready to go.

Britni: And yeah, the meltdowns, that's normal to be emotional.

Melanie: Change is hard.

Britni: Change is so hard, and changing food is hard.

Melanie: Yeah.

Britni: You know? You have... Food, is connected to so many emotions.

Melanie: It is, and there are some favorites you might have to give up. I remember tomatoes was so hard for me to give up.

Britni: But if you feel better-

Melanie: It's worth it...

Britni: Yeah.

Melanie: And then sometimes you're going to have that moment where you're like, "I'm just going to eat it. You know, I'm just going to have the chocolate." Chocolate is a histamine trigger And then you feel so horrible for two or three days. It's not worth it. So some clients, they just get a little heartburn.

Britni: Mm-hmm.

Melanie: And so that's their symptom, and they know how to deal with that heartburn, but it's, you know, when you're dealing with symptoms over and over and over, it takes a toll on the body. It comes at a cost to keep your body inflamed.

Britni: Yes.

Melanie: So like we were saying, freshness matters, storage matters, preparation matters. So someone who's particularly sensitive, freshly prepared foods or promptly frozen portions are really better choices than foods that have sat for a long time.

Britni: At the end of the day, we really want to make sure the diet and lifestyle support overall health, and you're still getting key nutrients to support the healing process. I mean, as you mentioned earlier, we don't want people following this super restrictive diet, right? We want to make sure you're getting enough food on board, and there are still enough options out there.

Melanie: There are still options out there. There's ways to do it. This is where you want to work with a professional who can walk this journey with you, give you recipes, give you tools on how to cook in your kitchen, give you shopping resources.

Where do you get low histamine meat? Where do you source some of these foods? What do you swap out? Like, tomatoes are in so many things. How do you swap that out? And that's where you want someone to help you so you are not turning to Google all the time. Because what works for one person may not work for another.

Get to the root cause

Overall diet is important, your lifestyle is important, your sleep is important, and we want to, once we have this figured out that, yeah, there's a histamine problem here, then what we want to do is say there's a root cause, and we want to get to the root cause and investigate.

It might be your digestive health. It might be hormone or estrogen dominance. There can be a lot of things that are contributing to this onset of histamine intolerance. We want to get to the root cause, and we want to start addressing and cleaning up your digestive health.

You know, one of my clients came in with just really looked like third-degree burns all over his body. Terrible rash; a lot of other things going on physically as well, bloating, digestive issues, hair loss, just a lot going on. And so as we talked, he said, "You know how everybody is eating beef sticks," because he was on the road trying to eat beef sticks, trying to drink kombucha, trying to... He said, "Those things make me so sick."

I can't do it. I can't do yogurt." I- which, you know, it's fermented. And so I said, "Let's just try a low histamine diet for two weeks and see how you feel." And sure enough, that was a problem. Rash went away, but I said, "Now we have to work on your, your digestive health."

And so as we've worked on it, he is now able to eat in a restaurant when he's traveling. He's now able to... He doesn't have a rash anymore. He doesn't... His hair's grown back. He's gained 10 pounds. You know, it's just, he's getting his life back.

Britni: Yeah.

Melanie: So you want to get to the root cause. We just don't want to coast along with histamine intolerance, because there's a reason that you have this. There are genetic components, yes. More often than not, if it's a sudden onset that you suddenly couldn't eat these foods, something happened, and, I think that investigative work with a professional is a big deal.

Britni: Absolutely.

Melanie: Yeah.

Takeaways

Britni: Yeah. Get you feeling better, get you eating more foods. Well, let's, let's wrap everything up. So here are the major takeaways. Number one, histamine intolerance and mast cell activation syndrome are related, but they are not the same thing.

They are not to be used interchangeably. Histamine intolerance generally refers to the difficulty handling histamine, you know, particularly dietary histamine. Whereas mast cell activation syndrome, that involves inappropriate mast cell activation, and it really requires specific diagnostic criteria. I mean, it's not something you're going to be able to figure out on your own.

Melanie: Right. The diet is the same-

Britni: Mm-hmm...

Melanie: -for both conditions, so that's where we come in as dietitians, is you can help you get relief with the low histamine diet, with all the things that we're saying.

But, you know, like I said, they're ugly cousins, but the approach is different. You know, number two, symptoms can be broad and nonspecific. Like we said, flushing, headaches, itching, sometimes congestion, especially at night. People get a dumping of histamine overnight, and you, they wake up feeling sort of lousy, or they toss and turn all night, don't feel well, wake up congested.

Those tummy symptoms, bowel problems with diarrhea possibly, heart palpitations. Histamine-related conditions really can be confusing because the symptoms, like we said, if you're, if you have mast cells throughout the body, any system it touches, it can affect.

Britni: So number three, not every food on a low histamine list is equally problematic, but you're not going to figure that out unless you start with a low histamine diet to begin with. So, you know, food histamine levels, they can vary tremendously based on the freshness of the food, the storage of the food, the processing, and then if it's fermented or not.

Melanie: Yeah. So number four, you don't necessarily have to be on a super restrictive diet forever. A temporary structured elimination followed by a careful introduction can help identify that individual tolerance.

But again, you got to get to that root cause so that we can improve your tolerance. And we've got a couple other podcasts that we've done. One was a success story, my interview with Marlys. And you and I did another podcast on histamine intolerance.

So if you put it in the search engine at Nutritional Weight & Wellness, weightandwellness.com, you will come up with some resources to get you started or listen further.

Britni: And if you are somebody that's been struggling with these unexplained reactions to food, we really hope today's conversation helped make this very complicated topic a little easier to understand and gives you a place to start. You know, histamine isn't inherently bad.

Your body actually needs it. The goal is to understand what's happening in your body and figure out what your individual triggers and tolerance levels are. So the goal should be to find the least restrictive diet that allows you to feel your best, while of course still meeting your nutritional needs.

Melanie: I think that's the key is we can't survive on rice and chicken. We can't. Or crackers or things that don't hurt you. We have to continue to nourish the body so that your body can do what it's supposed to do. It can turn over healthy cells. It can build bone. It can build muscle. The brain works properly.

Brain fog is another one that, you know, a lot of clients just can't think straight when their histamine bucket is overflowing. So if you suspect that you have MCAS or histamine intolerance, come and work with one of us. You know, a knowledgeable dietitian like Britni or myself really can get you on a road of more comfort and then some healing and rather than tackling it on your own, and this is what we are here for.

Learn More About Nutrition Counseling 

So to learn more about meeting with us at Nutritional Weight & Wellness, all of our dietitians are absolutely fabulous and are familiar with histamine intolerance. You can visit us at weightandwellness.com or give us a call at 651-699-3438.

Our goal at Nutritional Weight & Wellness is to teach each and every person the power of eating real food and how life-changing it can be. It's a simple yet powerful message. Thanks for listening, and we will talk to you soon.