The BEST Steps To Clean Up MCAS (Mast Cell Activation)

What are the biggest three kind of top down things when you as a patient and us as a provider are trying to look at mast cell activation or mast cell disorders and how to deal with them? Welcome to my YouTube channel. I'm Dr. A and we talk about mast cell activations. So there's three big areas and those involve patients, management of primary inflammatory issues and then long term cleaning up of the system. So the first thing is that patients, as providers, we want people to get better fast as we can. People get very impatient with the process on the provider side and patient's sick and they don't like it, they get very impatient with the process. And one of the things with complex chronic illness, but especially when you add in this layer of mast cell disorder, it's extremely comple the deepest levels of your system. And so if you've spun off into a big mast cell activation problem, it's not probably going to go away right away. You've probably been given a few drugs for it, maybe it helped, maybe it didn't help, and now you're just frustrated. Well, the first thing is what's the best way for me to work with the provider? And here's something that you want to think of just kind of looking in the back end of your provider's mind. Your provider knows that your body's going to process it different, differently than other people. And so I've seen, you know, people not realize this and get, you know, kind of upset because they'll say, why don't you have statistics that apply to everybody? And the reason is, is that one person's mast cell disorder is going to affect them one way and the next 10 people is going to be 10 different ways. Okay, but here's what you can do to help your provider and also help you know that you're on the right track. They start with something, you're going to come back in a week or two and then maybe a week or two and then maybe a little longer. Part of the feedback that is, did this stuff that we started last visit do anything? Did it do too much, did it do too little? Or did you not notice the thing that can then help your provider take the next step to say, oh, okay, you're one of those people that fits into a subgroup and that that subgroup is going to be more sensitive. We got to go slower or not sensitive at all. We can go faster. Right? Or doesn't notice anything. We might need to add things in. So that is really helpful. The feedb between you and the provider is critical. Because it's not a paint by numbers thing where you simply do X, Y and Z and your mast cell disorder goes away. It just doesn't work that way. So patience is important. Okay, the next, which we alluded to there is that your body is the only thing that really has answers. And so we put input in whether it's treatments or diet changes or removal of so whatever. And your body tells us, was that the right thing? Was it enough? Was it too much? And sometimes what was too much today is too little two weeks from now. The other thing you remember is very dynamic. Mast cell activation or mast cell disorders are not a linear treatment for almost anybody. You may aggravate in the beginning and then get better. You may get better, better, better, and then aggravate and then you have climb back out. This is all part of that feedback between you and the provider. And so you know what common thing I would say to people with mast cell disorders or other chronic illness would be? I hope you like me because we're going to be seeing a lot of each other until we sort out the way your body processes this. But you do have to have patience. But also patience, it's sort of a two sided coin, as all coins usually are, where there's patience. But there's also being an informed, empowered and active participant as the patient. So patience the virtue and patient, the person coming together. And so you and your provider need to know it might be a little slow going until you sort things out, but also you need to keep track of things and give them good feedback so they can ramp up or ramp down or change things around, etc. All very, very important. The next thing is that there has to be some acute level of safety as we work with mast cell products which are potentially deadly. And then we have to realize that that acute level of safety is just about a couple of things. And then we're going to work outward to other inflammatory mediators. Now, in other mast cell things I've done, I've gone into this more, but we blame mast cells because that's kind of how we named it. But four cell types that get involved in mast cell activation or mast cell disorders. And so you, you have your mast cells and you have your. Also basophils and eosinophils, they all do similar things. And then you have your CD40 class cells that make IgE, which is associated with type 1 allergic anaphylactic reactions. Think of them as a big target going towards the center. All four of these cell types, whether it's the CD34, CD40 types all create inflammatory stuff and they all cross trigger each other. So once disorders or mast cell activation syndrome is not just the mast cells anymore. Now everybody's dumping inflammatory stuff out and each one tells the other one to do more of it. So the next part of that is that mast cells release histamine, which is the safety thing we want to talk about. But they release tons of other inflammatory mediators. They release things that might help with drawing immune cells towards an area. They release things that might be slightly anticoagulant, they release things that are inflammatory, all things beyond histamine. So how do we stratify that? Well, what we do there is we take care of first do no harm. If you are developing histamine based type 1 reactions and so that would be allergic anaphylactic reactions, you might need, you know, an EpiPen, you might need to have certain other anti histamine type drugs, etc. But what you notice often with mast cell patients is that's good for safety. But antihistamine, histamine blockers don't always, if it was just about histamine they would take away all your mast cell symptoms and they don't. That's because there's all these other chemicals. So yes, you got to get the base in, you got to take care of whatever you need and we don't want you to be sick or injured. So EpiPens and antihistamines and whatever else you need there we do find early on and the early on could be the first few months or first year, it depends. Going on a low histamine diet, number of low histamine diets online. The ones that I think you should probably spend more time looking at would be the ones that are based from there's university nutrition centers. So it's pretty legit science. And they'll have lists of low histamine diets, very common to find online there. And yes, if you look at five low histamine diets, there'll be a lot of crossover and there'll be some outliers. I wouldn't worry too much about the outliers, but low histamine diet, they'll help take some of the burden off. You're going to say, well you just said it's not all about histamine. True. But things that are low histamine triggering or low histamine as far as, as product going into your, into your body through the diet also will reduce some of these other inflammatory media. So that's really important to keep in mind. Then you build out from there. So we've got emergency things and we got histamine management and then we've got mast cell specific therapies. So that might be mast cell stabilizers, which sometimes you don't tolerate early on but you will later. That might be more global inflammation blocking things. It could be any number of things. And sometimes depending on the level of dysfunction you have, you might need steroids for a while or you might not now. But their frustration, they had mast cell disorder, very, very high level. And they had gone and they kept going to the doctor and they, they got the basics, they got the antihistamines, the epipen, you know, you got steroids. And that just kind of made them feel sicker. But there was really no other guidance beyond that. Well, what I'm saying is, is those are all good, but if that's all the guidance you're getting, you have to look for somebody who works with mast cell disorders, mast cell activation syndrome, and understands that there's all these other layers that can get into it, then you're looking at long term. So that's the third part. So long term, that is. Did we make some headway? Can we move forward? Like I said, feedback with your healthcare provider, super important. And through that progress, then what can we do to take it to the next step? Obviously, looking forward, what does your diet look like long term? And diet is very individualized in my experience with people. But there might be a need to stay on, you know, a lower histamine type diet or a lower inflammatory diet or something longer term, you might need to look at the chemicals in your diet. So how much processed food are you eating? Because the chemicals that are in the diet is one of the biggest ways to kind of fill the bucket up so it overflows and then you have too much trigger from the chemistry side, a toxicity side into your mast cell deregulation. So maybe a lot of layers on your diet to look at. Another area is metabolic toxicity. Some people with mast cell activation issues also have sulfite intolerance or oxalate buildup or, you know, salicylate sensitive, many, many other things that go on those. What we call endotoxemia is the toxins from the inside of the body, whether it's salicylate or, you know, excess glutamate or any of the other ones I mentioned, those may have to be dealt with because they're all pro inflammatory and we need less of that, the better. And then defin repurative thing. So let's. We've got toxins, we reduce them in our diet, reduce our exposure. Let's get them out of our body. So that'd be. Drink enough water, having enough fiber, enough prebiotic foods, move the junk out, sweating all the stuff. But if you're not getting help, the next step that you have to do is find somebody who at least is informed in the chronic illness space because that's what mast cell disorders are, and then either has direct experience with mast cell disorders, mast cell activation, or experience with the other things that might it. So you say, well, what else might trigger it? All other things that cause chronic disease. We talked about toxicants and toxemias. Also chronic infections will make it worse ones. You didn't used to have that. You do now. GI problems, all sorts of things. This can be somebody in the licensed naturopathic physician world, the integrative physician world, the, you know, mass cell aware integrative practitioners, like Chinese medicine practitioners, a lot of really great integrative, you know, nurse practitioners and PAs, et cetera, et cetera. Just looking for people who are aware. So you're not starting from zero with somebody. I know I went into some things, it went a little deep, sounded a little scary. But you want to make sure that you understand that you got to have this relationship of feedback with your practitioner. You have to be patient with the process, but also empowered and let them know what's going on so they can make adjustments. You need to take care of the ground floor, which is managing the mast cells, histamine and the other inflammatory metabolites. We also need to realize it's more than just mast cells getting involved. And long term. You need to look at what other factors could go on. Endotoxemias, exo or outside the body, toxins, dietary changes, chronic infections, any other thing that can trigger you. But there is hope.