Mast Cell Activation Syndrome with Dr. Leonard Weinstock: Rational Wellness Podcast 216
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Dr. Leonard Weinstock speaks about the Mast Cell Activation Syndrome with Dr. Ben Weitz.
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Podcast Highlights
2:30 Mast cells are one of the most ancient white blood cells going back to caveman days and they were originally there to defend against parasites and other pathogens and they came to become the orchestrators of inflammation, infection control, and even dealing with burns. Mast cells live in the bone marrow in the precursor form and when there are infections, burn or trauma, they develop into active cells and they secrete chemicals that might either increase or decrease inflammation.
4:10 Mast cells can release a series of chemical mediators, including histamine, tryptase, prostaglandin, chromagranin, and heparin. Cytokines like interleukin and TNF are also released.
5:05 There are a lot of mast cells lining the gastrointestinal tract and things that damage our gut lining and cause increased intestinal permeability like food allergies and small intestinal bacterial overgrowth will tend to activate mast cells. Mast cells are most common in the duodenum and the ileum. In the esophagus, mast cells promote allergic disease, such as eosinophilic esophagitis.
6:32 Mast Cell Activation Syndrome (MCAS) is the most common mast cell condition, though there is also Systemic Mastocytosis, where you have a chronic disorder of overgrowth of mast cells in the bone marrow that is considered a malignant process. Systemic mastocytosis is associated with a high tryptase level. Finally, there is Mast Cell Leukemia, which causes circulation of malignant mast cells. While Mast Cell Activation Syndrome is fairly common, including occurring in 17% of Germans, though systemic mastocytosis is pretty rare, occurring in perhaps one out of 100,000 people.
14:15 Some of the most common gastrointestinal symptoms associated with Mast Cell Activation Syndrome include abdominal pain, bloating, constipation or diarrhea, nausea, and altered bowel habits. MCAS patients may have dysphagia, which are problems in the upper esophagus getting food down, as well as heartburn.
16:48 Testing for MCAS includes serum tests for tryptase and chromogranin A, but the yield for tryptase will be low. There is a genetic condition called hereditary alpha tryptasemia where you will have high tryptase levels. For chromagranin, you need to make sure the patient is off of the proton pump inhibitors for a good week. Plasma histamine and prostaglandin D2 can also be measured, but they have to be spun cold and frozen right away and sent to a reference lab, like Mayo. Heparin requires an ultra-sensitive assay and there is only one lab in the country that does it–the Robert Woods Johnson Institution in New Jersey. There are three urine tests that can be done–prostaglandin, leukotriene B4, and methyl histamine–but they will require collecting the urine cold. Dr. Weinstock finds that 70% of his patients that he has diagnosed with mast cell activation syndrome based on their history have a positive lab test. If they get tested when they are having an attack, the positivity rate of testing goes up.
21:05 The most common triggers for MCAS are infections, such as pneumonia, viruses, mononucleosis, shingles, sun exposure, heat, histamine foods like red wine, beer, salami, leftovers, tomatoes, cherries, gluten, dairy, mold, tick-bourne illnesses, and chemical exposures. 20% of patients with MCAS will have POTS, which can be due to autoimmune antibodies against the cardiac receptors. When you control the mast cells, the POTS gets better.
25:10 The most effective treatment approaches include a three week diet elimination of dairy, gluten, yeast, and histamine foods. The diagnosis can be made via history and using the Mast Cell Activation Syndrome Questionaire: Mast cell mediator release syndrome 8-26-19 (1). The testing above can confirm this. Treatment should start with both H1 and H2 antihistamines. The H1 blocker would would be an OTC drug like Allegra, Claritin, or Zyrtec and the H2 blocker would be a drug like Pepcid or Famotidine. These two OTC medications twice a day. Vitamin D is important and Vitamin C is a mast cell stabilizer. Quercetin and lutein are two flavonoids that can be used at this stage. Low-dose naltrexone is a prescription medication that is inexpensive and extremely helpful. Diamine oxidase is an enzyme that can be helpful in perhaps 5% of patients. Dynamic nerve retraining, meditation, and yoga can help with stress management. If phase one is not effective, then phase two treatment consists of Ketotifen, which is a strong H1 blocker, or another prescription strength H1 blocker. Phase three treatment will use Zileuton, which is a leukotriene inhibitor. If you have interstitial cystitis, then you could use Elmiron. Stage four is a drug called Xolair. And then there are various chemotherapies that can be used for investigational purposes, like hydroxyuria in low doses, which is for sickle cell in higher doses, Gleevec in low doses, which is for chronic myuelocytic leukemia in higher dosages, and Xeljans, which is a medicine used for arthritis and ulcerative colitis.
37:30 The microbiome can affect MCAS and certain probiotics, like bifidobacter and lactobacillus can reduce the production of histamine. If you have SIBO or dysbiosis, that can increase MCAS.
Dr. Leonard Weinstock is Board Certified in Gastroenterology and Internal Medicine, practicing in St. Louis, Missouri. He is president of Specialists in Gastroenterology and the Advanced Endoscopy Center. He teaches at Barnes-Jewish Hospital and is an Associate Professor of Clinical Medicine and Surgery at Washington University School of Medicine. Dr. Weinstock is an active lecturer, including having spoken at SIBO and various gastrointestinal conferences, and he has published more than 70 articles, editorials, and book chapters. He has recently teamed with Dr. Lawrence Afrin to research and publish articles on Mast Cell Activation Syndrome and gastroenterology. His website is GIDoctor.net. Here is a Mast Cell Activation Syndrome Questionaire to screen for this condition: Mast cell mediator release syndrome 8-26-19 (1)
Dr. Ben Weitz is available for nutrition consultations specializing in Functional Gastrointestinal Disorders like IBS/SIBO and Reflux and also specializing in Cardiometabolic Risk Factors like elevated lipids, high blood sugar, and high blood pressure and also weight loss and also athletic performance, as well as sports chiropractic work by calling his Santa Monica office 310-395-3111. Dr. Weitz is also available for video or phone consultations.
Podcast Transcript
Dr. Weitz: Hey, this is Dr. Ben Weitz, host of the Rational Wellness Podcast. I talk to the leading health and nutritionist experts and researchers in the field to bring you the latest in cutting edge health information. Subscribe to the Rational Wellness Podcast for weekly updates, and to learn more, check out my website, drweitz.com. Thanks for joining me, and let’s jump into the podcast. Hello Rational Wellness Podcasters. Our topic for today is Mast Cell Activation Syndrome and gastrointestinal problems with Dr. Leonard Weinstock. In the words of Dr. Weinstock, from a paper he wrote with Dr. Lawrence Afrin and others, entitled Mast Cell Activation Syndrome, a Primer for the Gastroenterologist, “Mast Cell Activation Syndrome is thought to be a common, yet under-recognized chronic, multi-system disorder caused by inappropriate mast cell activation. Gastrointestinal symptoms are frequently reported by these patients, and are often mistaken by physicians as functional gastrointestinal disorders.” End of quote. Searched functional gastrointestinal disorders include IBS and SIBO, and this may explain some group of patients who appear to have IBS and/or SIBO, and who fail to improve with our approaches.
Dr. Leonard Weinstock is a Board Certified gastroenterologist and internal medicine specialist, practicing in St. Louis, Missouri. He’s President of Specialists in Gastroenterology in the Advanced Endoscopy Center. He teaches at Barnes Jewish Hospital, is an Associate Professor of Clinical Medicine and Surgery at Washington University School of Medicine. He’s an active lecturer, and has published more than 70 articles, editorials and book chapters, and he’s recently teamed with Dr. Lawrence Afrin to research and publish articles on Mast Cell Activation Syndrome and gastroenterology. Dr. Weinstock, thank you so much for joining us today.
Dr. Weinstock: Thank you so much, Ben. Appreciate it.
Dr. Weitz: So can you start by explaining what are mast cells?
Dr. Weinstock: Okay. They’re one of the most ancient white blood cells in our body, going back to cavemen years. That’s the theory, because they were originally something to defend against parasites, protozoans, and ultimately they came to become the orchestrators of inflammation, infection control, and even dealing with burns. Maybe even the caveman, he got burnt with the first fire, had mast cells going to that site to activate the correct healing process and releasing chemicals that would allow blood vessels to develop for healing. So these cells live in the bone marrow in the precursor form, and then when the body senses something’s wrong, infections, burn, trauma, then they basically develop from stem cells into active cells that migrate to the location of the problem. And when everything’s controlled, they do the right thing. They secrete the chemicals that might decrease inflammation or, under circumstances where you need the inflammatory pathway to fight the infection, they might increase it and coordinate with other cells of our body. Mainly especially white cells and lymphocytes.
Dr. Weitz: What are some of these common chemical mediators that are released by mast cells?
Dr. Weinstock: Okay. You’ve got histamine, tryptase, prostaglandin. Those are the three biggies. Then you’ve got chromogranin, which is a common one that’s easy to measure, but we don’t really know what that does. And then heparin is a big one. So when you talk to patients and ask, “Do you have chronic bruising?” so many people do, especially women.
Dr. Weitz: Because heparin is a blood thinner, right?
Dr. Weinstock: Yeah, because well the heparin plays a big role for that as well. And so there are other things like cytokines that are produced, like interleukin, and TNF, and I’m sure you’ve discussed that in other inflammatory conditions.
Dr. Weitz: For sure. Are there a lot of mast cells in the gastrointestinal tract?
Dr. Weinstock: Yes. So we think that, from one study, that normal is less than 13 per high power field, and more than 20 is abnormal. And they go along with mast cell disorders. We’re not really sure how good that assessment is, because we do find them to be very common, and there are other reasons for it. Like food allergies, small intestinal bacterial overgrowth, things that damage our gut lining and increase intestinal permeability that activate mast cells. So there’s a whole differential diagnosis there.
Dr. Weitz: Oh, interesting. So these are activated in SIBO?
Dr. Weinstock: Yes, they are.
Dr. Weitz: Interesting. Are they more common in the small intestine or large intestine, or do we know?
Dr. Weinstock: Great question. Yeah, for sure the duodenum and the ileum are the highest sites for accumulation of mast cells. After that, you’ve got the colon, then stomach, then least amount in the esophagus. Although you can find them in the esophagus as a promoter of allergic disease such as eosinophilic esophagitis.
Dr. Weitz: Oh, okay. Interesting. What is Mast Cell Activation Disease, and then what is Systemic Mast Cell Cytosis as compared with Mast Cell Activation Syndrome?
Dr. Weinstock: Okay, great question. So basically when you start talking about Mast Cell Activation Disease, MCAD, that’s a group of conditions that are related to Mast Cell Activation in a setting either of A, a loss of control of the controller gene, which would be MCAS, systemic mastocytosis, where there’s a chronic disorder of overgrowth. In fact, a malignant or a slow-growing malignant process, where you get a lot of mast cells in the bone marrow that you can find by bone marrow biopsies, or in the small intestine, and they can be in the hundreds per high power field, where it’s most common to have 30 to 40 per high power field in MCAS. And then finally, there’s Mast Cell Leukemia, which causes circulation of malignant mast cells. And those are the three disorders under MCAD.
Dr. Weitz: How common is mastocytosis and/or Mast Cell Leukemia?
Dr. Weinstock: So one out of 100,000 people for systemic mast cell mastocytosis. This is something we definitely study in med school, but it’s actually pretty rare. And then that’s associated with a high tryptase level because of the massive, massive amount of mast cells. And the most common chemical that comes out of a group of bad cells would be the tryptase chemical. And then the problem there I’ll say right now is that tryptase is actually not that common with MCAS, about 15% people will have increased tryptase level who had MCAS. And amazingly, Dr. Molderings in Germany did a study to show that 17% of Germans are thought to have Mast Cell Activation Syndrome.
Dr. Weitz: Wow.
Dr. Weinstock: Tremendous number.
Dr. Weitz: Wow. Is it that common in other populations?
Dr. Weinstock: It hasn’t been studied, so only he has studied it. It’s common in my office, in terms of patients coming in. Patients coming in with refractory gastrointestinal symptoms, that had three colonoscopies, two upper endoscopies, CAT scans, gastric emptying studies, et cetera, et cetera. And these people will have many symptoms in other parts of their body, often five systems. You know, whether it be the cardiac, cardiovascular or allergic symptoms in the head, eyes, ears or throat. Respiratory problems, neurological problems. Systems are involved, and mast cell mediators are the chemicals, and really an unregulated mast cell activates good, normal mast cells which then can secrete more chemicals, and then have this rebound of cascading chemo-toxic chemicals that will cause major disruption to the body systems.
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Dr. Weitz: It’s interesting you know, over the years there have been these patients with functional gastrointestinal disorders who don’t get better with particular protocols, and everybody’s trying to come up with a new protocol. And over the years, there’ve been a number of ways to sort of explain these patients, and this seems to be the latest one, and you wonder if this is the real reason or just a part of a basket of reasons to explain patients who don’t get better with conventional treatments.
Dr. Weinstock: Absolutely. I think it’s been around for a long time, and I have patients in their 70s who have had symptoms since childhood. In fact, if you get a good history, many of the kids who grow up, did have colic, they could get the ones who had eczema, food allergies, headaches, constipation, migraines. Admitted, some of that gets better, and then as they become a teenager with the hormones, you get severe periods, predisposition to infections, then more and more symptoms develop with time.
Dr. Weitz: So this could be like an underlying reason for PMS or a whole series of other conditions, right?
Dr. Weinstock: Oh yeah. Absolutely. So I just saw a woman on Monday who basically has been doing really great, and she says, “I can’t believe what life has been like now via addition of these medicines. All these things that I’ve lived with for years and stopped complaining about because of doctors not wanting to hear it and not being open to it are gone. And my life has been changed.” So it’s that kind of thing that’s a wonderful satisfying remark that makes me want to keep on going.
Dr. Weitz: So what are some of the most common GI symptoms associated with Mast Cell Activation Syndrome?
Dr. Weinstock: Okay, so in order, it’s abdominal pain, bloating. And this bloating can be very remarkable. It can be spontaneous where people look pregnant very quickly. Now opposed to SIBO, which takes an hour or two to get going, again, probably through chemical mediators and reaction to the food and the mast cells that live in the gastrointestinal tract, then it rapidly increases. Maybe through paralysis of the intestine, but nonetheless, there’s distension and bloating. And as far as SIBO goes, I will say that we did a study looking at 200 patients who had breath tests, and 30% of MCAS patients had a positive breath test compared to 10% of controls. And yet many of the patients had bloating, and so it’s a combination with SIBO or without. And again, this is a common problem. Altered bowel habits, certainly, and diarrhea most often. So approximately 60% of the people have diarrhea and 50% will have constipation. Nausea is a big one. So you were talking about functional bowel syndromes, cyclic vomiting syndrome or just chronic nausea is a common phenomenon, at least 50% of patients with MCAS.
And dysphasia is an interesting one. People will often have problems up in the upper esophagus getting food down, and I’ve seen patients and I’ve done esophageal manometry and their physiological abnormalities have shown therefore some dysfunction of the neuro-musculature. And then finally, heartburn is common. Because if they’ve got high histamine levels, that’s one of the stimuli to the parietal cells. Histamine is a trigger for heartburn/acid output.
Dr. Weitz: So how do we diagnose Mast Cell Activation Syndrome? What kind of testing is beneficial?
Dr. Weinstock: So serum tests include tryptase and chromogranin A. But keep in mind the low yield for tryptase. And if the level is increased, want to also have to think about this condition called HaT, hereditary alpha tryptasemia, where there’s a genetic condition where you have a gene that increases tryptase production. But if the tryptase is high, then you also have to worry about systemic mastocytosis. With respect to the chromogranin, that’s an important measurement, but you have to make sure somebody’s off of the proton pump inhibitors for a good week. Plasma. There are two tests that we run on plasma, histamine and prostaglandin D2. But you have to make sure it’s spun cold, either in a cold centrifuge, or a centrifuge with ice cold jackets that the tubes fit into, and they have to be frozen right away and then sent off to the reference lab. And then Dr. Afrin will often do-
Dr. Weitz: Do typical labs-
Dr. Weinstock: … tempering tests.
Dr. Weitz: Do typical labs like Labcorp or Quest, do they have facilities for that?
Dr. Weinstock: They usually send it off to Mayo.
Dr. Weitz: Oh, okay.
Dr. Weinstock: Yep. And then heparin, unfortunately there’s only one lab in the country, and one in Germany that does heparin tests that are reliable. You know, heparin’s very common to measure, but you need a ultra-sensitive assay to make it work.
Dr. Weinstock: And then finally, there are three urine tests that are done.
Dr. Weitz: Where is the lab to measure heparin accurately?
Dr. Weinstock: So in New Jersey, the Robert Woods Johnson Institution. And then there are three urine tests, and you got to collect the urine cold and put it in the fridge or put it in a ice bucket, and then do a 24 hour urine that looks at histamine.
Dr. Weitz: How do you collect a urine cold?
Dr. Weinstock: I don’t know. Well, you’ve got to [crosstalk 00:19:18]-
Dr. Weitz: A person stands in a walk-in freezer?
Dr. Weinstock: Well, men have the advantage of using the urinal, and then capping it off with a urine collection device, just putting it in the fridge or putting it in a ice bucket. Women will have to transfer to the toilet hat and then pour it into that container and keep it cold, and then bring it to the lab cold. They freeze it, then they send it off, generally to the Mayo lab, where the tests are done looking at a prostaglandin, leukotriene B4, and methyl histamine. So it’s four bloods, three urines. And a good history. And then if you’re negative on that, as 70% of my patients have been, then you can do biopsies. Yeah. I mean the mast cell makes over a thousand chemicals.
Dr. Weitz: 70% of the patients with this condition are negative for the lab testing.
Dr. Weinstock: No, positive. Positive.
Dr. Weitz: Oh, positive. Oh. Okay.
Dr. Weinstock: Yep. So I’ll get a positive in 70% of my patients.
Dr. Weitz: Oh, okay. Okay.
Dr. Weinstock: The yield could be increased if they’re sick. So that percent of just pretty much random evaluation, I will often, if somebody’s really cyclical and they’re not sick the day I see them, I say, “Either trigger yourself with food that triggers it and come in for the lab, or wait for the next attack.” And then that increases the yield.
Dr. Weitz: What are the most common triggers?
Dr. Weinstock: The following. Infections, mold exposure-
Dr. Weitz: What are the most common infections that you see that trigger it?
Dr. Weinstock: Oh, well they could be pneumonia, viral infections, biggie. So like mononucleosis. In fact, a teenager with prolonged mono who doesn’t get better for a long time, you have to look at that history and say, “Could that person have MCAS?” I have patients who have had herpes zoster or shingles three times to, one had it for 11 attacks, because they don’t deal with infections well.
Dr. Weinstock: So also sun exposure, heat, histamine foods. So alcohol, especially red wines, beer, salami, leftovers, tomatoes, cherries, that kind of thing. And then we have gluten sensitivity and dairy sensitivity often be a trigger.
Dr. Weitz: And then mold?
Dr. Weinstock: And then mold. And tick-bourne illnesses, chemical exposures. I have a great instance of a gentleman who was in and out of the hospital with attacks of abdominal pain and nausea. He’s 50 and he’s been doing that for pretty much three decades. And then he would have these little red cherry angiomas, the skin angiomas that would, during an attack, get enhanced and itchy or burn, another characteristic finding in patients with MCAS. And kind of the bottom line is he kept on having this, and then he quit his job as a paint salesman, and he had a significant decline in the attacks. But he has required a potent medical therapy, but he’s gotten a lot better since he’s been away from the fumes.
Dr. Weitz: Hmm. So basically, sounds like there’s a big overlap between chemical sensitivities, or multiple chemical sensitivity syndrome and MCAS.
Dr. Weinstock: Well, that’s true. And the people who have written about chemical sensitivity disorder have realized that their patients are often Mast Cell Activation Syndrome patients.
Dr. Weitz: Okay. I noticed POTS is potentially also caused by MCAS.
Dr. Weinstock: Right. So first of all, 20% of my MCAS-
Dr. Weitz: POTS [crosstalk 00:24:09] history, you know?
Dr. Weinstock: Well, yes and no. So 20% of my MCAS patients have POTS, and POTS can be due to autoimmune antibodies against the cardiac receptors. It can be due to MCAS in about a third of patients. When you control the mast cells, their POTS gets better. And then there’s situations where they have more output and less uptake of norepinephrine at the levels of the nerve endings. And then there’s post-viral POTS, which is an autoimmune disease. So I think there’s a lot of good evidence for certain etiologies for PoTS, and many of them are treated at the root cause if you can work hard to find it.
Dr. Weitz: What are some of the most effective treatment approaches for Mast Cell Activation Syndrome? And maybe we should start with diet.
Dr. Weinstock: Yeah, you’re so right. So step one is to look for the triggers. First of all, that is certainly diet. So I do tell my patients to go on a three week diet elimination of dairy, gluten, yeast, and histamine foods. It’s a tall order, but it’s incredibly important. And then I have patients who tell me they’ve challenged themselves with gluten and then they had a major flare-up, and they just didn’t realize how much of a factor it was until they went off again.
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Dr. Weitz: So I’m thinking of a patient with SIBO, and maybe you’ve gotten some treatment and they haven’t quite responded, and now you’re suspecting that they have Mast Cell Activation Syndrome. Let’s say they were following say a low FODMAP diet. would you now say, “Hey, forget the low FODMAP,” or would you layer the low histamine diet on top of the low FODMAP diet?
Dr. Weinstock: I would push the diagnosis. So I’d get a full history. I would use this Mast Cell Mediator Reactive Syndrome questionnaire that we used, and this will heighten your pick up of mast cell activation disorders.
Dr. Weitz: Okay, so there’s a questionnaire. Would you mind sending me a copy of that?
Dr. Weinstock: I certainly will. Yeah.
Dr. Weitz: Okay. Great.
Dr. Weinstock: And so then let’s say you’re either very suspicious, you don’t have the lab testing or the patient doesn’t have insurance, then you could try simply, after you’ve got the history and you’re suspicion is increased, you could try basic step one therapy, which is antihistamines, H1, H2. Like Pepcid or Famotidine. And the H1 blocker would be Allegra, Claritin, Zyrtec, things like that. So those two medications twice a day, both over-the-counter. Vitamin D is really important, and it’s very important that your level goes up. I’m sure you’ve addressed that in some of your lectures & interviews.
Dr. Weitz: Yep.
Dr. Weinstock: Vitamin C is a mast cell stabilizer. Part of the step one program. And then Quercitin or lutein are two flavonoids that can be used at this stage. And then usually I use low-dose naltrexone as part of my step one approach, because it’s inexpensive and it’s extremely helpful.
Dr. Weitz: What about diamine oxidase?
Dr. Weinstock: Great question. So the DAO enzyme is responsible to break down histamine generation from foods, so there are certain foods that break down our histamine to begin with, that need to be broken down further, and the DAO insufficiency can be present in individuals, can be measured. A precision lab will do this. In terms of having MCAS and enzyme deficiency, then it implies that you’re going to have two things wrong with you that are significant. I do see it from time to time. Doctor Afrin says about 5% of his patients who have tried DAO and have MCAS will see benefit. So it’s definitely possible, and worth a try. And then the other two drugs for step one would be Cromolyn, an expensive medication but a good stand-by, and Montelukast, also called Singulair. And then there are other steps with other medications.
Dr. Weitz: So typically step one, how long long before you expect to see significant benefit?
Dr. Weinstock: Usually within a month. Now in terms of people who are very sensitive to medicines, it’s important to consider that when they try one of the medicines and actually get worse, it’s they’re reacting against the chemicals in the capsule. In the tablet, such as stabilizers, packaging material, fillers, and preservatives. And then food dyes. So these are things to look out for, and so I’ll use compounding pharmacies for people like this.
Dr. Weitz: Okay. And so in a month you expect to see them resolve or get 50% better or what sort of results do you expect to see in a month?
Dr. Weinstock: Right. In a month, you hope to get at least 50%. Now when you’re using Naltrexone, it takes time to ramp up, and so it will take a bit longer to see the effect from that. Usually a month and a half.
Dr. Weitz: Okay. And then how long will patients need to continue with this protocol?
Dr. Weinstock: So let’s say they get a great response, or they go from five drugs to six. Not really drugs, your chemical moieties, over-the-counter products for the most part. But you know, the Pepcid and your Claritin which are medications or drugs. Naltrexone, we’re using it in homeopathic doses, and it is a drug, but it’s really a way for the body to be tricked into making endorphins, which can cause benefits, help the body reduce inflammation. The other things to think about are the vitamins are things that can benefit people, take lifelong. But the problem is, if you’re let’s say born or develop a mast cell that’s got a mutation, that’s not going to go away. So you’re left with it. You’re stuck with it, basically. And so that’s where [crosstalk 00:33:32]-
Dr. Weitz: Is there any way to determine if that’s the case?
Dr. Weinstock: If you had your blood tested in Dr. Moldering’s lab in Germany, you could find out. But otherwise, we don’t have a good test in America.
Dr. Weitz: And you’re-
Dr. Weinstock: Once people find their formula, usually they stay with it. I just saw a woman this week who really has improved with meditation, and has just kept with the vitamins, and Quercitin, and has been able to taper off some of the medications. So there is some mind over matter. I do recommend things like dynamic nerve retraining system, and meditation and yoga to help, because under stress especially we have eight different chemicals that come out of the brain which activate mast cells. So that’s important.
Dr. Weitz: What dosage of Quercitin do you like to see?
Dr. Weinstock: I start off with 500 twice a day and then go up to 1000 twice a day.
Dr. Weitz: Okay. By the way, some people call it “Queri-cee-tin.” I don’t know if there’s a proper pronunciation or not.
Dr. Weinstock: I’m sure there is, but we’ll go both ways.
Dr. Weitz: Okay. So if level one treatment doesn’t work, what’s level two?
Dr. Weinstock: So then that’s where I’ll get Ketotifen, which is a specific, strong H1 blocker. But there’s also a prescription strength H1 blocker that could be used as well. Then there’s phase three, where you could use Zileuton, which is a different leukotriein inhibitor. So if you’re urinary lithotrines were high, then you could push that. If you got interstitial cystitis, then step three you could use Elmiron, which is pentosan. And then stage four, step four, is a drug called Xolair. Which is, insurance will pay for if you’ve got refractory asthma and urticaria, from hives. But that can help the whole impact of Mast Cell Activation symptoms too. And then there’s various chemotherapies that we’ll use for investigational purposes.
Dr. Weitz: Really? Like what?
Dr. Weinstock: So actually looking at my data for hydroxyuria, which is called Droxia, that’s a drug used by Sickle Cell patients at lower doses, and then higher doses leukemia patients. And then Gleevec, Imatinib, is a great drug. In fact, that’s what my paint salesman wound up using and having great, great results with. And use that in low doses, and high doses we use it for leukemias, chronic myelocytic leukemia. In the low doses with Imatinib, it actually works at the level of the mast cell controller gene, the KIT gene, so that’s a good one. And XELJANS, tofacitinib, is a medicine that’s actually used with arthritis and ulcerative colitis, and that’s another choice one has as well.
Dr. Weitz: Is there any part to be played with probiotics? Does the microbiome play a role in this whole syndrome?
Dr. Weinstock: Yes, so Dr. Afrin wrote an article about the microbiome and MCAS, and we know since you have the mast cells living in the lining of the intestine, if you have SIBO, that’s a factor, or if you have dysbiosis, that’s a factor that keeps on activating it, so it’s possibly altered that. I work with a dietician who’s really into particular probiotics, but the ones that have really worked well are the bifidobacter and lactobacillus bacteria which reduce-
Dr. Weitz: Could you just repeat that last sentence? You cut off again.
Dr. Weinstock: So the bifidobacter, lactobacillus in reducing the production of histamine. And therefore, reducing the impact that one has from the mast cell.
Dr. Weitz: Okay. Great. That’s pretty much all the questions that I have. So any final thoughts you want to wrap up this discussion with?
Dr. Weinstock: Yes. Think about long COVID syndrome as a similar condition as Mast Cell Activation Syndrome. The mast cell is involved in acute COVID, and then it may stay activated and produce long COVID symptoms. I’m doing a research study on that now, and basically patients who developed long COVID went from pre-COVID where they looked like controls, to having symptoms like MCAS patients. And our mast cell study group has many individuals who have treated long COVID patients with mast cell medications that I just talked about, and they’ve done really well.
Dr. Weitz: So which particular long COVID symptoms have you noticed in particular that seem to improve? How about the brain fog?
Dr. Weinstock: Yes. Fatigue, brain fog. I haven’t treated enough with restless leg syndrome, but I’m going to start with a severely affected man today.
Dr. Weitz: I’ve heard four or five different people with different hypotheses with a certain amount of data trying to explain the brain fog as an autoimmune condition, as a inflammatory condition. There’s a series of different explanations for the brain fog as a vascular issue, as a small vessel clotting issue.
Dr. Weinstock: I will step on a ledge and say that a lot of it’s due to the mast cell being activated, and if you get better with antihistamines and Naltrexone, that takes it away from vascular obstructions. And I think the majority is going to be that. Certainly in a condition so complex as COVID, it may be multiple different causes. But look for somebody who’s heavy in mast cells if you’ve got long COVID or read about it, and try some basic stuff. Over-the-counter.
Dr. Weitz: Yeah. Is there a list of doctors who are savvy with Mast Cell Activation Syndrome? Is there like a-
Dr. Weinstock: Well there’s a little bit on tmsforacure, T-M-S-F-O-R-A-Cure.org. It’s the mastocytosis website. But honestly, I think the people who are doing integrative medicine, even the naturopaths have more interests, than your general doctor or Mayo clinic or whatnot. I mean they’re on the backside, and I think that people who are open-minded are on the forefront.
Dr. Weitz: Right. How can listeners and viewers find out more about you or get in touch with you if they wanted to schedule a remote consult? Do you do remote consults?
Dr. Weinstock: I don’t. I only see people in Missouri, and so ideally Missouri. Illinois I also see. I’m going to put more of my articles and lectures on my website, gidoctor.net. We changed websites, and some of the Mast Cell Activation Syndrome education was left off. But yeah, so-
Dr. Weitz: And right now you’re traveling to Massachusetts because is it you teach there somewheres?
Dr. Weinstock: Vacation.
Dr. Weitz: Oh, vacation. Okay.
Dr. Weinstock: My summer vacation.
Dr. Weitz: All right, good. Well have a great vacation Dr. Weinstock.
Dr. Weitz: Thank you listeners for making it all the way through this episode of the Rational Wellness Podcast. Please take a few minutes and go to Apple Podcasts and give us a five-star ratings and review. That would really help us so more people can find us in their listing of health podcasts. I’d also like to let everybody know that I now have a few openings for new clients for nutritional consultations. If you’re interested, please call my office in Santa Monica at 310-395-3111. That’s 310-395-3111. And take one of the few openings we have now for a individual consultation for nutrition with Dr. Ben Weitz. Thank you and see you next week.
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