"MCAS and histamine intolerance are so prevalent - yet most people have never heard of either" - Dr Tina Peers

0:00Dr Tina Peers:This show is sponsored by Primadine, a clean, natural and science-based spermidine supplement that's been a long-time staple in my own longevity stack. Because studies suggest that through autophagy, spermidine increases healthspan and upregulates a range of health markers, from memory and cognitive function to heart health, hormone balance, fertility and even hair growth. Plus, you can be assured that all ingredients undergo rigorous third-party testing. Buy Primadine now at OxfordHealthSpam.com and use the discount code DrSophie, that's D-R-Sophie for 20 % off. This show is sponsored by Microbes, an award-winning liquid probiotic that's now a staple for me.

0:43Dr Tina Peers:Because Microbes, with a Z on the end, is different. For one thing, they source directly from the soil on their Wiltshire farm, meaning more diversity, with at least 15 strains of good bacteria in every single shot. it's brewed so it can survive in the stomach and a remarkable 92 % of customers say it makes a difference plus they offer micro-friendly cleaning gardening and even microbes for dogs buy now at microbes.co.uk and use the discount code sophie20 for 20 % off hi i'm sophie and this is age well with dr sophie shotter a space devoted to all things health wellness and longevity because for me aging well is about looking and feeling like the best possible version of ourselves inside as well as out.

1:31Dr Tina Peers:So together with my producer Fee I'll be deep diving into the latest research sifting fact from fiction. I'll also be talking to all kinds of trusted experts tapping into their knowledge along with bringing you conversations from a range of interesting women and men finding out how they age well. So this is my show, welcome along and as always thank you so much for listening.

2:01Dr Tina Peers:Tina you qualified in 1983 from Guy's Hospital Medical School and enjoyed a 41 year career first as a GP and then as a consultant specialising in menopause. Then in 2019 you established a clinic to treat patients with mast cell activation syndrome or MCAS along with long COVID taking as it says on your website a holistic approach in managing such complex cases. Exactly a year ago you stepped away from allopathic medicine in order to fully embrace that integrative and holistic medical approach focusing on the underlying causes of conditions rather than just treating symptoms and of course taking the time to offer a more personalized approach.

2:41Dr Tina Peers:You remain a clinical lead for the menopause consultancy and you retain your memberships with the British Society of Ecological Medicine and Freedom Health Connect. There's obviously lots we could talk about but today I'd love to chat to you about histamine intolerance and mast cell activation syndrome because it seems that these are two related conditions that are often overlooked pieces of a much larger health puzzle and from what I've read that's because the symptoms of histamine intolerance and MCAS can be similar to a lot of other health problems so it's not always obvious. Before we head into causes, can you firstly talk us through the symptoms of both histamine intolerance and MCAS and perhaps do a quick explainer of what they actually are?

3:23Certainly Sophie. So histamine intolerance is when people don't make sufficient enzyme to break down the histamine in their body and there are two enzymes. One of them is diamine oxidase and I would say that 98 % of my patients who have mast cell activation syndrome also have a deficiency in the production of this enzyme. So for them, it's a bit of a double whammy. They make too much histamine and they don't efficiently get rid of it. So they are sort of two distinct conditions, but there's a huge amount of overlay and overlap between the two. The mast cell activation syndrome is also a genetic condition and runs in families.

4:07It's incredibly common. It's actually 17 to 20 % of the population are suffering from this condition, but it's incredibly under-recognized and under-treated. And that's primarily because doctors are not taught about it at medical school. And I remember when I was at medical school, Sophie, we had literally probably half an hour lecture on mast cells and allergies. And I remember being told mastocytosis is incredibly rare and you will never see one case on average in your whole career. So there's no need to know very much about it. And actually, they didn't talk about mast cell activation syndrome at all because in those days it wasn't recognized as a condition.

4:51It hadn't been sort of together as something that people could suffer with. And subsequently, it was put together as a syndrome in the sort of 1980s. And it was given a name in the 1990s. And it wasn't until 2007, when three case studies were published in the medical literature, that it was sort of brought to more people's attention. And so it's really not well known about, but it's incredibly common. So these poor patients are chronically ill with hyperinflammation in two or more systems. And they get very little in the way of help, advice, support, relief. And that's until recently. I think things have improved over the last three, four years, partly due to long COVID, sort of putting the condition on the map.

5:41So the mast cells are sort of everywhere where the body is in contact with the outside world and the environment. but it also line the nerves. So, and histamine is actually a neurotransmitter. So bearing in mind where these mast cells are, it's quite easy then to see how it can cause inflammation and result in certain symptoms. So if you cause inflammation in the gut, you're going to get IBS, which could be bloating, wind, could be constipation, diarrhea, or alternating between the two. it could be discomfort. If you've got the mast cells affected by the lungs then it's going to cause asthma, shortness of breath, that kind of symptom.

6:22If it's affecting the upper airways then people get post-nasal drip, they get runny eyes, they get itchy or if it's affecting the skin it would be itchy skin, hives, maybe eczema, maybe psoriasis, maybe rosacea on the face which will be much worse when somebody then has some alcohol or something that's high in histamine. It could be that it causes vasodilatation, in which case they may get chronic headaches. It could be anxiety. Now, when the histamine goes up in the body, the body releases adrenaline to try and bring it down, and that can cause panic attacks. So many people, they mess and maybe some chronic headaches and some panic attacks.

7:01So it's very important to take a really clear history from people. The other thing that's very interesting is I always ask my patients, do you cut labels out of your clothes? Because so many of them do because they have hypersensitivity. Their mast cells are on red alert and it just makes them sensitive to everything. Loud noises, bright lights. They have often a particularly sensitive sense of smell. And as I say, often cut the labels out of clothes. They may not have any of those, but it's an interesting one to ask them. And so often they will say, yes, how did you know that? You know, yes, so lots and lots.

7:36It can be chronic fatigue. You know, they get up in the morning, they shower, they have some breakfast and they're exhausted. Their mitochondrial dysfunction means they're not producing enough ATP and they're just absolutely exhausted. So chronic fatigue is a big one. Post-exertional malaise is another one. Not being able to do high intensity kind of exercises, having to keep to things like yoga, pilates that sort of thing walking and maybe some aerobics in the water is good so yeah they have to adjust their lifestyle accordingly but many many symptoms so tina what actually causes all of

8:15Dr Tina Peers:these issues is it the case that while histamines ordinarily protect us the problem arises is when they go into overdrive and from what we've read this can be triggered by not only food but things like stress, even trauma, medications, even exercise. And by the way, we do have a COVID related question further down, but we'll do that maybe separately. But yeah, what causes all of these issues? Yes, 17 to 20 % of the population actually have abnormal mast cells, and their mast cells are overreactive. And the mast cells are part of our immune system. They're like the first responders and they are just inside the body.

8:55So they're under the skin, they are lining the sinuses, the nasal passages, the mouth, the gut, the whole way, all the way along the gut, the vagina, the bladder, the lungs. So they're literally everywhere where we could be exposed to changes in chemicals, etc. And unfortunately, in this group of patients, and it is congenital, so it runs in families, they are too reactive. They are trying to protect the patient, the person too much. So they react to things and release their 2 ,000 cytokines into the body when they should really just be ignoring something. So for example, some people will find that if they smell somebody's perfume, suddenly their mast cells will be activated, release all the cytokines, and they'll be itching and scratching or having a terrible headache.

9:46as a result of being stimulated by the smell of the perfume. People can, as you quite rightly said, they can be set off by all sorts of things. Stress, childhood trauma is a big one. You know, if somebody has got overreactive mast cells and they feel that they are in danger as a child, then their body really goes into fight or flight the whole time to try and protect them. And the problem is, it's very difficult to switch this response off and to calm it down. So stress, walking from one warm room to a cold room can stimulate a production of the cytokines. Exercise, as you quite rightly say, breathing in and out rapidly into the lungs can make the lungs go into mast cell activation and that will cause inflammation in the airways, which will make them feel like they've got asthma.

10:37Of course, they haven't got asthma. Asthma has a different mechanism. And so they don't respond to, for example, a beckonase inhaler, but they might respond to a steroid inhaler, which is anti-inflammatory, or to antihistamines, or to Intel inhalers, which are no longer available in this country, which were incredibly useful for people because they contained sodium chromoglycate, which is a mast cell stabiliser. And that was wonderful to be able to deliver that into the lungs. So there are lots of different stimuli, and the body gets into this overreactive fight or flight system and it's quite difficult to calm it down and to tell it to start ignoring some of these stimuli which is what we have to do.

11:22Dr Tina Peers:So how are histamine intolerance and MCAS diagnosed and is it the case that if someone notices their symptoms getting better after using antihistamine medications or other mediator blocking medications this could be a sign that we're likely dealing with MCAS or histamine intolerance? Absolutely, absolutely. So the best way to diagnose histamine intolerance is for somebody to have a diamine oxidase blood test. If they have a diamine oxidase blood test and it's less than 30, then they have a deficiency. Unfortunately, the lab result will say if it's more than 10, it's very unlikely that the person has histamine intolerance.

12:04But I disagree completely. My experience since 2016, when I first became aware of this condition and started to really study it in depth, is that patients who have absolutely got histamine intolerance could have, on a good day, a level of 23. The normal level is 30 to 200. So having a level of 23, 24, 25 is not normal. And if you've got them on a bad day, you might find that their level is too. So it's sort of intermittently appalling and intermittently perhaps a little better if they have steered clear of histamine foods and they've managed to get their histamine levels down with some antihistamines, etc.

12:47Now, you can also have genetic testing performed, which will show your pathways of how you handle histamine and whether you've got the good genes that make good levels of diamine oxidase or whether your genes are actually a little bit faulty and don't produce very much in the way of the enzyme. So there are two ways really to diagnose it. Usually people respond very well to reducing the histamine in their diet and that's going to give you another clue that you're on following the right path. So if they take high histamine foods out of their diet like tomatoes and avocados and spinach and tea and coffee and green tea and alcohol and chocolate, etc., peanuts and things like that, then they're going to start to feel better because their body will have less histamine to sort out.

13:41And they can also take diamine oxidase supplements before a meal, 10-15 minutes before a meal, which will help reduce the histamine load of that meal and the histamine absorption. Now when it comes to mast cell activation syndrome, it is diagnosed mostly clinically. And that's because there are only a few tests that will help with the diagnosis. They're not usually very easily available. Certainly the NHS doesn't provide any of them. And they can be a little bit tricky. So, for example, if you want to check somebody's histamine levels, there's no point in doing it in the blood sample. You have to do it in the urine.

14:24And the urine has to be kept cold and it has to be transported in a cold chain. And then it has to be looked at when it's cold in the laboratory. And most laboratories can't handle that kind of process. So it's quite difficult to find laboratories that can do it. They're getting better, but it's not sort of mainstream. You can also do things like prostaglandin D2, but again, prostaglandin D2 actually sort of disintegrates within 20 minutes, it breaks down. So it all has to be handled very carefully to get some kind of response. The other thing that is a bit of a myth is that you have to have an elevated serum tryptase to have mast cell activation syndrome.

15:05And this just simply is not true. Some patients, they would never have an elevated serum tryptase, but they absolutely have got mast cell activation syndrome. So there's a very good statement that's come out, which is the consensus two statement. People can Google that by Dr. Lawrence Afrin, that's A-F-R-I-N, and 39 of his colleagues in North America who have been treating this condition for decades now. And they have been, they put together this statement, which is really very helpful when it comes to diagnosis. And they said that if a patient has inflammation in two or more systems, plus or minus allergic reactions, plus or minus anaphylaxis, plus or minus hypertrophy, benign hypertrophy of certain tissues.

15:59And this can manifest itself as cysts, cyst formations in the breasts, in the ovaries, in the liver, kidneys, thyroid, pancreas, etc. So those would give you clues that you are dealing with somebody who has got MCAS. But the other part of the diagnosis is that absolutely, as you say, Sophie, they respond well to simple antihistamine mast cell activation treatments. So that would be type 1 and type 2 antihistamines. Not necessarily they respond to both, but they respond at least to one of them. And that they respond to mast cell stabilizers, such as ketotafen or rupatidine, sodium chromoglycate.

16:42And if they do well with the mast cell activation treatments, then that's diagnostic, really, that you're on the right course and that's the condition they have. Unfortunately, generally, specialists look at systems in isolation. So, so often, a respiratory consultant will look at the sort of asthma-type symptoms that people might get, and they won't necessarily ask that the patient may also be suffering from IBS or chronic headaches or have eczema, etc. And so they won't put the whole picture together.

17:18Dr Tina Peers:And it also seems that many experts, including you, are noticing an increase in histamine reactions after COVID and a link with long COVID. I mean, what's going on there? Well, that's a very good question. So I started learning about mast cell activation in 2016 because my youngest daughter was very unwell. And it was because she was eating lots of superfoods to try and get herself better. And she was actually poisoning herself with very high histamine foods. So this really came to my attention in 2016. And I then found that I was diagnosing three or four people a week who were coming to see me for contraception or menopause or whatever, just by taking a clear history from them, it became obvious that these people were suffering.

18:02And many had been suffering for decades from this condition. And then along came COVID. And in the spring of 2020, I actually saw a report from a pathology report from Italy, where the pathologists had studied some patients who had sadly died from COVID. And they said in their lungs, there was hyperinflammation, there was hemorrhaging, there were blood clots, there was also a breakdown of membranes. And when I read that, Fiona, I thought, well, this is mast cell activation. These are as a result of cytokines. So the hyperinflammation is from histamine, the breakdown of the membranes is from elastase 2, another cytokine that's released.

18:47The heparin that's being released is causing the hemorrhaging. And there are other pro-thrombotic cytokines that can cause clotting. So it seemed to me that it was the reaction of the body to the infection that was making it very difficult for some of these patients. And we know that about 80 % of people who had COVID, they got over it and they had like a flu-like illness or dispelled unwell for a few days and then they got better. But about 20 % of the population didn't do so well and found that it took them longer to improve. And I believe that was because it was their response to the infection that was then causing them symptoms, causing inflammation in the lungs, causing the gut symptoms that they were experiencing, etc.

19:36And therefore, treating patients with acute COVID for mast cell activation syndrome was the way to go. And it work very well. I treated over 100 patients with acute COVID, and some of them stopped coughing within four hours of taking an antihistamine. So they really were responding very well to this approach. Some of my colleagues in America came to the same conclusion, people who are very prominent in the mast cell activation arena, and they published a paper on the 10th of September 2020 in the International Journal of Infectious Diseases. It was Dr. Lawrence Afrin, Mulderings, and Weinstock who published this paper.

20:15And they said, is the hyperinflammation of COVID caused by mast cell activation? So they came to the same conclusion that I did. In the summer of 2020, I started hearing about people with long COVID. And it seemed very logical that these were patients who had mast cell activation syndrome, who had the infection, and then they just didn't get better, which is what we often see in MCAS patients, who were then diagnosed subsequently with post-viral fatigue or ME or chronic fatigue syndrome, etc. So I opened a long COVID clinic on the 1st of November 2020, absolutely convinced that I would be able to help these patients.

20:54And I was very curious. I wanted to know, did they have a primarily undiagnosed and untreated muscle activation? And then their response to the infection had created their symptoms? Or was I barking up the wrong tree? But actually, I would say 99.5 % of my patients had a previous history of undiagnosed and untreated mast cell activation syndrome. And lo and behold, they responded incredibly well to treating their long COVID as mast cell activation syndrome with simple low histamine diet at type 1 and type 2 antihistamines, some mast cell stabilizers, and they responded very well. But you have to get rid of all the triggers and clearing all of the triggers has been challenging, but we now are able to do that with something called augmented NAC, which helps post-COVID and post-injections to clear the spike protein, which is a big stimulus for the mast cells.

21:49So the big question is, what are the different approaches to treatment?

21:54Dr Tina Peers:I know that diet plays a key role, but the tricky thing is that foods that apparently exacerbate the issue are also some of the foods that we talk about as being really healthy. For example, bone broth, fermented foods like kefir, kimchi, yogurt, sauerkraut, legumes like chickpeas, nuts, mushrooms. Other foods can apparently trigger the release of histamine and create problems. And again, this is generally perceived as healthy stuff like avocado, banana, kiwi, citrus fruits, tomatoes. What are your thoughts here? Does this mean that all of these are completely off the table forever? And what's your typical treatment approach?

22:32So they're not off the table forever, but they certainly are in the short term. And it's one of the most important things for patients who think they might have this condition to do is to actually go on a low histamine diet and to certainly try it for at least three months. I encourage people to look at a website called whatthebleatcaneat.com. And from that website, you can take a list of about 200 foods, many of which are histamine-free, which you can eat as much as you like, and also low histamine foods. And from that list, it is possible to have a very healthy and varied diet. It's about, rather than excluding things, it's about making substitutions.

23:16So for example, if somebody says, oh, I like almond milk, well, that's very high in histamine, and that's going to be sort of making them feel worse. better to have coconut milk. If they say, well, I eat a lot of peanuts, better to eat one of the nuts that has low histamine, like Brazil nuts or macadamia nuts or pistachio nuts and pecan nuts. So it's about making substitutions so that your diet stays as varied as possible. But you're absolutely right, Sophie. So many of the really healthy things are very high in histamine. And I think as we've seen a sort of trend of people juicing and trying to get as healthy as possible it's when it's actually exposed those who have got histamine issues and mast cell activation so they are having oh no more and more symptoms and becoming more and more sick with it but you know they respond very well to type 1 antihistamines it's important to try and find which one is the best for you because they're not all the same.

24:16So we like to, for people to do a trial of maybe a week or two of something like tyrosine, 10 milligrams, two or three times a day. The bottle will say once a day. That's not enough. You need to take it two or three times a day. Maximum safe dose would be four times a day for a few days and then go back down to more of a maintenance dose maybe of twice or three times a day. If somebody responds well to the tyrosine, then fine, stick with it. If not, if they haven't noticed any particular difference, try loratadine in the same way, same dose. If that doesn't work, try fexafenadine. You can buy 120 milligrams of fexafenadine, but you can get a prescription for 180.

24:57And the maximum safe dose of that would be four times a day of 180 for a few days. So we need people to be on a maintenance dose for the moment until we calm everything down. Then we add a type 2 antihistamine, such as famotidine, twice a day or nisatadine. That also will block the type 2 antihistamine receptors, so that will help many people. It doesn't help everybody, but in some, it's absolutely miraculous. You know, people who go from having diarrhea eight times a day to not having diarrhea at all. So it can be incredible, the response to the medication. Then we look at mast cell stabilizers such as the ketotofen, which works brilliantly in about 70 % of patients.

25:43Start taking it in the evening because it makes you drowsy, can do. Your body gets used to it. And as your body gets used to it, you gradually increase the dose until you are on maybe 10 mils or two milligrams in the evening. Some people are then able to add another two milligrams in the morning. That can be an absolute game changer. We've got ripatidine, we've got sodium chromoglycate, particularly if they have gut symptoms. We've got LDN is another approach, very anti-inflammatory. Really, montelocast can help, especially if they have lung issues and asthma-type symptoms. But with montelocast, people must remember that 30 % of people who take it will feel depressed, in which case they must stop taking it straight away.

26:28And then their mood bounces back very quickly, thank goodness. But it's important for people to be aware that that could be an issue. so you know and we look at lifestyle changes things like grounding getting out in the sunshine getting into nature taking some supportive vitamins and minerals eating organic food no processed foods very important etc so we you know it's a full whole body approach

26:54Dr Tina Peers:and what supplements do you recommend for people trying to get better apparently research has shown that histamine intolerance can be because as you mentioned this deficiency of DAO the diamine oxidase enzyme that helps the body break down histamine from food I think there are also some specific probiotics that could be beneficial here could you talk about this and any other supplements you'd recommend yes it's a very good question so probiotics we normally recommend are one called S. buladi, which does not increase the histamine levels in the gut, and also lactobacillus and bifidobacterium. And just as a side note here, it's very important for people to take the lactobacillus and the bifidobacterium in particular, because we found that everybody is deficient in those since COVID and all things to do with COVID.

27:47Everyone who's had any stool samples taken, it's been very remarkable that they are deficient in those particular part of their microbiome. And those particular bacteria produce short-chain fatty acids, which are very protective to the lining of the gut. So it's very important to pop those back in with some good probiotics. And in the meantime, I recommend people take some sodium butyrate, 300 milligrams a day, which is a short-chain fatty acid that will protect whilst they're building up the bacteria that can then produce their own short-chain fatty acids. The other important vitamins and minerals are the B vitamins, which helps so many of the steps of the histamine breakdown.