Innovative Solutions to MCAS with Dr. Leonard Weinstock: Rational Wellness Podcast 437

Podcast: Play in new window | Download | Embed

Subscribe: RSS

Dr. Leonard Weinstock discusses Innovative Solutions for Mast Cell Activation Syndrome with Dr. Ben Weitz.  

[If you enjoy this podcast, please give us a rating and review on Apple Podcasts, so more people will find The Rational Wellness Podcast. Also check out the video version on my WeitzChiro YouTube page.] 

 

Podcast Highlights

---

---

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 some SIBO 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 contact info is at Specialists in Gastroenterology and his phone is 314-997-0554.

Dr. Ben Weitz is available for Functional Nutrition consultations specializing in Functional Gastrointestinal Disorders like IBS/SIBO and Reflux and also Cardiometabolic Risk Factors like elevated lipids, high blood sugar, and high blood pressure.  Dr. Weitz has also successfully helped many patients with managing their weight and improving their athletic performance, as well as sports chiropractic work by calling his Santa Monica office 310-395-3111.

 

---

---

Podcast Transcript

Dr. Weitz: Hey, this is Dr. Ben Weitz, host of the Rational Wellness Podcast. I talk to the leading health and nutrition 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. I’m very excited that we’ll be having a conversation with Dr. Leonard Weinstock about mast cell activation syndrome and related conditions. 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 often mistaken by physicians as functional gastro gastrointestinal disorders.” This may explain some patients who have IBS, reflux, and other functional GI disorders who fail to improve with the conventional approaches.

Dr. Weinstock: Doctor, that was a pretty good statement. Go ahead. Keep on going. But I like that. I like that sentence. Seriously. Yeah. Good. It’s true.

Dr. Weitz: Well, you know, I’m always coming across patients who don’t fit the perfect treatment parameters. We, you know, we have our share of patients who have SIBO, have dysbiosis, have reflux.  We work ’em up. We go through our protocols, in my case, natural protocols, and patients get great results, and then there’s a percentage of patients that just struggle or get better and get worse again, and we go round and round. And we’re always looking for what is the issue here? And is this a case where the person has something other than just SIBO or other than just microbiome dysbiosis.  And so, I think mast cell activation syndrome is something underappreciated. And so that’s why I’m excited to be talking about that condition today. So, Dr. Weinstock is board certified in both internal medicine and gastroenterology. He practices in St. Louis, Missouri. He’s president of Specialists in Gastroenterology in the Advanced Endoscopy Center.  He teaches physicians across the country at conferences, and he does research on mast cell activation syndrome, restless leg syndrome, and fibromyalgia. So, Dr. Weinstock, thank you so much for joining us.

Dr. Weinstock:   Oh, my pleasure. I’ve always enjoyed being on your podcast.

Dr. Weitz:  Thank you. So when you see a patient for gastrointestinal symptoms such as stomach pain, constipation, diarrhea, when do you start suspecting NAS cell activation?  Or is that sort of always on your mind? 

Dr. Weinstock:  Well, of course it’s always on my mind because patients come in feeling that they’ve got this condition because they’ve done some Googling. But what I do is I look at the questionnaire that new patients are given and bring in with them. This was created by Dr. Molderings who discovered MCAS in 2006, and then wrote about it more in 2007, showing that these angry, uncontrolled mast cells [00:04:00] have many different kinds of mutations of the controller gene. But what I do recommend is that the physicians look at the review of systems. So when you get a patient in often, either by computer the night before or maybe a iPad that day, they’ll check out, check off the symptoms that they’re having.  And so what I see, what I call, is a bold. review of systems, then my ears pick up. And what do I mean about bold review of systems? Well, when you check off that you’ve got, let’s say hives, itching, bruising, you’ve got bladder problems, pelvic pain, you’ve got muscle pain, neuropathic pain. On this review of systems, this checklist, they all say patient states they have X, Y, Z.  And if you see many of these symptoms popping up in multiple systems, then you have to think of one of six different multisystemic disorders. And let me just spell that out. You know, the most common one is mast cell activation syndrome or MCAS–17% of the population, occurring primarily in women with a five to one ratio from female to male, and it occurs primarily in Caucasians.  So if you just drill that down in the Caucasians, 17% or perhaps more have symptoms or syndromes, often seen in MCAS. Then you’ve got POTS, postural, orthostatic tachycardia syndrome. It’s not just passing out, it’s got multiple issues and EDS, Ehlers Danlos syndrome. The hypermobile type has multiple symptoms and it relates to both POTS and MCAS as the evil triad.  Then finally, you’ve got three others. Very important would be long COVID. Chemical sensitivity disorders and the rare, thankfully, the rare vaccine complication, which will present with mast cell or POTS like conditions as we published in the Gardasil afflicted women who wind up having terrible illness of certain proportion after getting the Gardasil HPV vaccine.  [One paper from Dr. Molderings and Afrin is Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options ]

Dr. Weitz: Interesting. That survey you mentioned for MCAS, is that available online? Can you send that to me so I can put it in the show notes?

Dr. Weinstock:  Oh, I’m definitely going to send it to you.

Dr. Weitz:  Great. Okay.

Dr. Weinstock:  So one of the ways to screen for mast cell activation syndrome is that they have these other systemic symptoms like pain in [00:07:00] different parts of the body seem to have excessive histamine reactions and I guess there’s some skin issues, et cetera.  Oh, yeah, and itching, hives, rashes atypical acne, cystic acne, nodules under the skin little, he angios little blood vessels that many people have as they age. But the patients with MCAS have the, he angios causing itching and burning during an attack. Little blood vessels or tline dicta on some, not that many itching without a rash, just a persistent problem.  And bruising with almost inexplicable contact that leads to bruising.

Dr. Weitz: What about taking a blunt instrument and rubbing it across the skin to see if the patient gets like a red reaction? Is that something that we can consider a strong hint that they might have mast cell? 

Dr. Weinstock: Yes. That this is called dermato graph and absolutely is one of the triggers.  It probably is in the realm of 40%. And then I left off some of the most, one of the most important skin symptoms would be flushing. Okay. It can be uncomfortable and it’s usually face and chest. So I and neck. So I come in and I see usually a woman complaining about multiple symptoms. I look at her face and neck and I say, you know, that you’re flushing out.  And they often do.

Dr. Weitz: Interesting. You know, one of the, I don’t know why this came up in my mind, but one of the treatments one of, one of the supplements I’ll use for patients when managing cardiovascular symptoms is niacin. And some patients get really extreme amounts of flushing and some don’t get any.  Is that an indication as well that they may have excessive mast cell activation? [00:09:00]

Dr. Weinstock: Well, I will tell you now that the mast cell has 300 receptors. So, in terms of activating that particular mast cell, the niacin could onboard a receptor on the mast cell, making it more likely for that person to have flushing.

Dr. Weitz: Interesting.  Alright. So, what are some of the common chemical mediators that are released? Well, first of all, can you explain what are mast cells to begin with?

Dr. Weinstock: Great question. So the mast cell is the captain of the immune system. Seriously. I thought that was the lymphocyte. No.  It’s the mast cell. Okay. It’s the oldest cell in the body. In terms of the immune cells now how they figured out it was the oldest and other cells came on board later, I don’t know. But it was useful in the time when very many parasites were [00:10:00] present and it would kill parasites. It would basically, it lives in the bone marrow as a precursor.  When that mast cell gets chemicals that tickle it and say, Hey, there’s a burn, there’s a bone break. There’s this fracture is causing pain. And you have other triggers. Out in the periphery, the mast cell wakes up. Goes into the circulation. You don’t see it on the microscopic views unless you really distill down a lot of blood looking for it.

But that mast cell goes to the place where there’s the burn, the bone break, et cetera, the infection. Okay? And so what that mast cell does, it nestles itself into the tissue. It can live there for a year. And it can tell other blood vessels to other blood vessels to develop in that area.  So that will improve on [00:11:00] vascularity. It tells other white blood cells, both mast cells and neutrophils, lymphocytes, et cetera, that there’s something going on that they need to behave and work on with their anti-inflammatory or sometimes pro-inflammatory chemicals that all serve to help. Heal that skin or that bone area.  So, when it’s over, when everything’s good and repaired, the mast cells shut down, except if you were born or develop soon after birth or after pregnancy, a mutated mast cell, and then you’re in trouble because you’re gonna develop mast cell activation syndrome.

Dr. Weitz: Huh? Can mast cell activation syndrome develop later in life?  Are there causes of it that can be corrected? [00:12:00]

Dr. Weinstock: So that’s a great question. So last week I saw two women, same day hour apart who had developed one developed pots, and then later MCAS within a week of delivering her third child. The first and second deliveries were difficult, but anyway and then another one an hour later who developed 48 hours after delivery symptoms of MCAS.  So there, there’s that, there’s secondary MCAS COVID can produce a secondary type MCAS. We looked at patients who were healthy. Not selected for anything but just generally healthy. And then we looked at a control, another control group of mast cell activation syndromes, diagnosed but not treated.  And then finally we compared them against long COVID patients.  And the [00:13:00] long COVID patients had the exact same symptoms as the mast cell patients, but before they had the infection, they were just similar to good old healthy controls. So that’s a sec. That’s a, that basically long COVID, it’s complex.  There are other things going on, but a segment of long COVID patients are really just MCAS patients. There are other things, other inflammatory pathways and vascular problems and so forth that can cause long COVID.

Dr. Weitz: Are there other viral infections besides long COVID like Epstein Barr and HSV, et cetera, that can also be triggers? 

Dr. Weinstock: Epstein Barr. Epstein Barr is a major trigger of advancement of underlying MCAS in teenagers. So they have prolonged healing and basically poor healing in general is a mast cell thing because it’s a [00:14:00] uncoordinated dysfunctional mast cell that causes problems. People get scratches, wounds.  It takes forever to heal. That’s pretty typical of bad healing. That’s one of my questions on this questionnaire. I supplemented Dr. Moldering’s questionnaire with my own that looks at childhood symptoms, teenage symptoms and adult symptoms, and it builds a story. So, classically speaking, mast cell activation syndrome starts with a few to four to five symptoms, mild to moderate sometimes in childhood. Then in teenager years, especially with female hormones, things start to activate. They get terrible periods. I call it stay at home periods. And that hits home in that question. And then then they go into adulthood, especially with pregnancy or just more hormones in general.  Problems like endometriosis. Then they blossom with symptomatology akin to mast cell activation and related syndromes.

Dr. Weitz: Now we mentioned histamine as one of the chemical mediators involved in mast cell activation syndrome. There’s also a condition called histamine intolerance. How is that it different than mast cell activation?

Dr. Weinstock: Well, there’s two ways you can think about it. If you have a high histamine food like salami or, you know, sardines tomatoes, leftover meat tomato sauce and other beer, wine coffee, tea, chocolate, et cetera. And I’ll put a plugin for the future. A good friend of mine has an amazing program.  It says the website’s name is what the bleep Can I eat.com, and it’s really great. [00:16:00] Fantastic. So if you’re concerned that histamine is your problem, you just plug in histamine, it tells you what you can and can’t eat. But so histamine can affect mast cells directly. Or it can hit other areas of the body and cause problems.  So you can get high histamine levels simply just by having dysfunctional mast cells being around. So they secrete histamine, but they also have histamine receptors on it. So if you’re missing the DAO enzyme, then the histamine pathway creates excess histamine, which can hit your mast cells, good or bad or normal and and your tissues.  And so there was an old state study that looked at histamine and tryptase levels in the rectum. They biopsied the rectum [00:17:00] of irritable bowel syndrome patients and compared it to controls those patients with. Irritable bowel syndrome, whether it be diarrhea or constipation, had increased levels of both histamine and tryptase in the tissue.

And they had mast cells that were increased. And if the mast cells were closed to the sensory nerves then the pain was worse. So, to be specific, you’ve got some histamine enzyme issues, but you also have 1200 different chemicals that a mast cell can make, including, of course, tryptase, which is very specific, but is rare in mast cell activation syndrome.  Much more common to be elevated in two conditions, a hereditary condition, HAT, and [00:18:00] a rare disease called systemic mastocytosis.

Dr. Weitz: And that’s the very severe medically life-threatening version of mast cell activation syndrome. Right, right. So, whereas,

Dr. Weinstock: MCAS has very few, or what you’d call normal amounts of mast cells in the bone marrow mastocytosis has a heavy, dense impact of mast cells and they’re, you know, squished in there.  And so they’re spindle shape when they come out, they do deposit themselves grossly in the intestine. You can get these swollen obstructing lesions in the intestine. It’s a malignancy. Whereas MCAS behaves bad, but is not malignant. Right. Okay.

Dr. Weitz: So, how do we diagnose mast cell activation syndrome besides [00:19:00] the questionnaire?  I know triptase and some of these chemical mediators can sometimes be measured in the lab.

Dr. Weinstock: So there are two camps: Dr. Afrin and Moldering’s camp, of which we have now a group called the International Society of Mast Cell Activation Syndromes. I’m in that camp. There are over 800 doctors who believe in what was originally described by Dr. Afrin, Dr. Moldering. And that’s gonna be diagnosed with symptoms in two or more systems. So it could be, for instance, asthma or hives GI problems that are compatible with histamine reactions or mast cell reactions in particular. That’s the major criterion and that’s not too dissimilar than the consensus one group, her who are [00:20:00] allergists who believe that the first way the first step is, or the major criteria are the symptoms.  The allergists really want to see that the patient has anaphylaxis, which we don’t see that much in the consensus two group, but they want to see that. Along with other symptoms like I’ve mentioned and we can talk about more. And then is the chemical diagnosis of MCAS. 

Dr. Weitz: So the consensus,

Dr. Weinstock:  one second to,

Dr. Weitz:  yeah, go ahead.

Dr. Weinstock:  One second.

Dr. Weitz:  Anaphylaxis for those who don’t understand, is a severe allergic reaction where you can die, your throat closes up, you, you can’t breathe. Your body swells up, right?

Dr. Weinstock: Yeah. You got it. Blood pressure goes down, pulse goes up, throat gets tight. They may need intubation. They may or may not have hives at the same time.  Maybe the, those are the peanut allergy folks, [00:21:00] but, we just don’t see that much in the MCAS patients that we diagnose. ’cause we diagnose more than the consensus one group because they are stuck on tryptase being the only chemical allowed to be examined, determined, and decidable whether a person has it or not.  So many people, however, see an allergist, they do a blood test, it’s normal. Therefore they say you don’t have MAS. But if they look at their own criteria, they have to bring that patient back when they’re sick and having an attack to show a rise, significant rise in the tryptase level. Whereas our group is happy if any of the mast cell chemicals are increased.  And then finally there’s the fact that. If you see a patient getting better with mast cell [00:22:00] medicines like antihistamines and many others that we’ll talk about then that counts. And so for consensus one, it’s the typical symptoms with or without blood or urine test abnormalities. But they get better with mast cell meds versus the allergist.  A lot of a number of symptoms, anaphylaxis, tryptase rise, has to be there and they can, they need to get better with mast cell meds, so they’re gonna possibly diagnose the tip of the iceberg. We’re looking at the base of the iceberg where most MCAS patients live.

Dr. Weitz: So my understanding is testing these chemical mediators is very difficult.  It has to be within a certain period of time of having a mast cell activation flare. Some of these ingredients have to [00:23:00] be said, the blood has to be like, put on ice and gotten to a specialty lab in a short period of time. In other words, running some of these labs is very difficult. Isn’t that right?

Dr. Weinstock:  No. No. Okay.  So let me go through it. ’cause you know, maybe, you know, a lot of people, Ben, you know, a lot of people have misperceptions because they’ve been fed this malarkey by the allergists. Let me just tell you. Oh, okay. It’s not that hard. It’s not that hard. Okay. Okay. So, so what did attest run? Okay, so, first of all, serum is very stable, whereas plasma is very labile.  And what I mean is that the histamine in blood or urine has to be kept ice cold.  So you have to spinhistamine for histamine looking at their plasma level in a cold centrifuge if [00:24:00] you’re gonna do it that way. Although there is serum histamine tests that can be done instead, prostaglandin, chromogranin and tryptase can be just drawn with serum spun down and then put it in a cold area so it’s not gonna boil.  But those are not issues. Now the urine needs to be collected cold. They have this jug, they put it in and out of the fridge, and then they put it in the freezer and bring it into the lab the next day. And they mail it frozen to the reference labs and they mail the histamine plasma frozen to the reference lab and they mail the other three to the reference lab.  Although most places, most hospitals can easily do onsite chromogranin and tryptase. So those are the parameters. Now, [00:25:00] should you do things like not be on aspirin or nonsteroidals for five days? 

Dr. Weitz:  Let, lemme just clarify real quick.  So the labs you’re talking about running are serum tryptase, chromogranin, histamine, and prostaglandin.  Right? 

Dr. Weinstock: Correct. And then the urine is leukotrienes. Ekos. Yeah. This long two prostaglandin, just call it prostaglandin 2 alpha.  Okay. F two alpha. Two alpha and n methyl histamine. Right. So in fact the end methyl histamine in urine is accepted by many of the allergists if they don’t see the tryptase up.

But let me just tell you, Ben I took my first 200 patients to see what, how many got a positive test. 70% got a positive [00:26:00] test in one and a half of the tests–blood or urine and with the 1.4 incidents 70% positive, 30% that I, you know, did you know they were just in with me talking, I sent to the lab, 30% were negative.  So what’s going on there?  Well, they weren’t sick enough to have a chemical rise, or they got one of the other 1200 chemicals that goes up, but not the common ones or the ones that we can test for. And then if you, I see have heparin you know, if you can test for heparin, then you’re you’re, you’ll go up by a yield of 80%.  But that’s very hard to test for. It has to be a very special assay. And so it’s different than the regular  heparin that is found. And just out of interest, a lot of people bruise. So many people bruise. When I did internal medicine, they checked off bruising a lot [00:27:00] and I said, wow. What’s that all about?  Nobody had an answer, but the fact is that the mast cell is the only one to produce heparin and heparin causes bleeding and bruising. Okay. Yeah. Okay.

Dr. Weitz: Is there a lab that offers a panel of these tests?

Dr. Weinstock: Well, they’re sent to Mayo most often, and Mayo will then send off the ones they can’t do.

Dr. Weitz:  Okay.  And do you do these tests on most of your patients?

Dr. Weinstock: That’s a really good question. I mean, if they are just screaming MCAS and look like it and let’s say they’ve come to me with, the fact that, you know, they feel better with antihistamines ’cause they have bad allergies. And I’ll say, well, does the antihistamine help anything else in your body?  And they say, well, I do have more energy. I’m less fatigued, [00:28:00] then I’ll put one on one together to make two multiple symptoms response to mast cell activation. That equals MCAS. You don’t have to do the blood and urine on everybody. I did see, however, a 17-year-old woman yesterday with EDS and of course she had MCAS because 85% of EDS patients have MCAS.  And the thing is that she’s only 17. So I felt like I want to do the testing and somebody like that early just in case. People will switch over to consensus two and they’ll say, okay, oh, when she was 17, she had a high prostaglandin level, let’s say. And so it helps nail it down a bit more.  But there are plenty of 35, 40 year olds or 50 year olds that come [00:29:00] in with classic symptoms and they’ve responded to some antihistamines. Antihistamine use is so common and and sometimes they’ve had problems with sleep and then they’ve been given a benzodiazepine and they have dramatic response with that and they don’t get it.  But I do. Basically benzos decrease mast cell activation in four different lab tests. And in our paper that came out in 25. So, I may not test everybody and if people, you know, are not that sick I say, are you having a good day or not? You know, then they’re just not that sick. I’ll say, well, can you survive a challenge of histamine or walking out in the heat?  ’cause hot weather is a big trigger of the 50 different triggers. Hot weather is probably the worst. So, sometimes I’ll trigger them a [00:30:00] little bit and then do their blood and urine test then.

________________________________________________________________________________________________________________________________________________________

Dr. Weitz: I’ve really been enjoying this discussion, but I just want to take a few minutes to tell you about a product that I’m very excited about.  Imagine a device that can help you manage stress. Improve your sleep and boost your focus all without any effort on your part. The Apollo wearable is designed to just to do just that, created by neuroscientists and physicians. This innovative device used as gentle vibrations to activate your parasympathetic nervous system, helping you feel calmer, more focused, and better rested.  Among the compelling reasons to use the Apollo wearable are that users experience a 40% reduction in stress and anxiety. Patients feel that they can sleep. [00:31:00] Their sleep improves up to additional 30 minutes of sleep per night. It helps you to boost your focus and concentration and it’s scientifically backed.  And the best part is you can get all these benefits with a special $40 discount by using the promo code Weitz, W-E-I-T-Z, my last name at checkout to enjoy these savings. So go to Apollo Neuro and use the promo code Weitz today. And now back to our discussion.

________________________________________________________________________________________________________________________________________________________

Dr. Weitz:  Do patients get cured from mast cell activation syndrome or can they only be managed?

Dr. Weinstock: For the most part, they’re stuck with that mutation. You know, a mast cell patient has evil mast cells and normal mast cells, but those evil ones with the abnormal gene mutation live forever. You can really dummy things down. And as I published in a case of a paint salesman you had, it was 50, when he saw me for 30 years, he had severe attacks of nausea, vomiting, abdominal pain, diarrhea, multiple ER visits, multiple hospitalizations.  The abdominal pain are GI symptoms. Were one symptoms, one system, and he had only one other system, and that was the hemangiomas. And I have pictures showing these hemangiomas that got worse. So he had two body systems. I put him on mast cell therapy and he did okay. Then I put on more advanced therapy with Imatinib, which stabilizes the kit, and then he got a lot better, but he still was not right.  And so I, you know, asked him [00:33:00] again about what he does for a living and what kind of chemical exposures and whether there are tick-borne illnesses, mold implants, metal in the amalgam in the mouth, metal in the mouth. He said, well, I am a paint salesman and I go to conventions. And that’s often when things get worse.  So everybody’s showing off the paint and he’s getting fumes basically. I told him to stop and he retired because he had a great 401k from the paint company. And bottom line is he went into complete remission. Right. And then I have one other patient who is in a complete remission, complete.  And I will tell you that story now ’cause it’ll lead to the other thing we’ve talked about was fibromyalgia. Okay, so this poor woman, [00:34:00] 45, when I met her at age four, started getting weird symptoms. Nobody believed that anything was wrong. Then she had ultimately worked up to a diagnosis of fibromyalgia, which by the way, can start when you’re young.  Fibromyalgia 12 years of that. Multiple doctors, including doctors who told her she was psychosomatic, she had multiple symptoms, syndromes, irritable bowel. OCDA a DHD, brain fog, depression, anxiety, abdominal pain, bloating, difficulty swallowing, heartburn, and a few more. And I had put her on naltrexone and antihistamines, my step one therapy, which is five over the counter and one prescription, namely naltrexone.  And she did a bit better. But then we got the idea to try microdosing of GLP ones, the obesity drugs which now are FDA approved for things other than obesity but are all inflammatory. And she came back for her three month follow up and she was all smiley and bubbly. And she said, I have zero symptoms.  I haven’t had zero symptoms my whole life, no symptoms, no syndromes. And then she broke into tears and saying, why did everybody ignore that I was sick?  Why didn’t anybody believe me?  Except you.  Well, intense case. That’s an amazing case. Yeah. It’s a great case. Yeah.

Dr. Weitz: So when you get patients that you suspect of multiple chemical sensitivities, do you do toxin testing and detox [00:36:00] protocols?  

Dr. Weinstock:It’s a good question. I look the opposite, right?

Dr. Weitz:  Because I, that would be my first inclination, but that’s partially based on my orientation in the functional medicine world, but… 

Dr. Weinstock:  right, well, like, so, you know, many people are allergic to nickel and jewelry, so you have to look for that, the Jewelry nickel. 

Dr. Weitz: There’s painter lead, there’s a bunch of heavy metals and other chemicals. And

Dr. Weinstock: I mean, I do have a patient who’s heavy metal which maybe you’d call the chemical sensitivity or just call it heavy metal disease. And of course the other ones are the tick-borne illnesses, right?  Which absolutely cause multisystemic disorders, you know, li Lyme disease, et cetera. Yeah, absolutely. And Alpha Gal, big in our country. 

Dr. Weitz: For people who don’t know, Alpha Gal Syndrome is an allergy to meat products that can come from getting bit by a tick. 

Dr. Weinstock:  Right and it can give you GI symptoms. Only or are GI symptoms with allergic symptoms and even anaphylaxis.  And it can further confuse people because it’s not like you eat a peanut, then you go into anaphylaxis. It’s 12 hours later after eating the meat, pork, or lamb or dairy products or sho shoots of dairy, you know, that are in pills, magnesium stearate and the gelatin capsules it’s interesting.  There’s a lag phase even though it’s IgE me mediated. But, so anyway, as far as chemical le let’s go back to chemical sensitivity. Yeah. Okay. Go back to chemical. You know, I’d love to hear what you do. I really do want to get your hand out for that. But many of these multiple chemical sensitivities are caused by [00:38:00] tilt, T-I-L-T. 

What is that?

Yeah. TILT. It’s a study by Claudia Miller that looks at loss of tolerance to normal chemicals that leads to actually mast cell activation and basically its own mast cell activation disease. So if you Google TILT in capitals and UT San Antonio, where all this research is being done.  You’ll get some interesting information and there are ways to plot your symptoms and come up with a star type program which reflects just how severely ill you are and what you can do to get better so that your pattern of illness decreases.

Dr. Weitz: Interesting. How, well, how do you diagnose somebody with Alpha Gal syndrome?

Dr. Weinstock:  Simple antibody. It’s the alpha gal galactoside antibody. 

Dr. Weitz:  And what are the characteristics that make you start thinking about that?

Dr. Weinstock: Well, they have just atypical, irritable bowel type symptoms, abdominal pain. And they haven’t responded to typical FDA approved medication, which frankly don’t do that much.  And then some of them have had all allergic problems. So, but basically I’m looking for that in every single patient with irritable bowel that hasn’t responded to therapy.

Dr. Weitz: Wow. That’s one that I don’t think is on the radar. So you task for Alpha G enzyme, is that what you said? Antibody

Dr. Weinstock: IgE. I antibody.  Okay. IgE, I the IgE antibody. And the fact is that it’s going up as far as Wisconsin, it used to be just down at the level of Georgia across, but now it’s up in, [00:40:00] in New York, it’s in in Missouri, and it’s all the way up to northern states like Michigan, and patients can remember getting bit by a tick with a little white spot on the back.  That’s the lone star tick.

Dr. Weitz: Yeah. Interesting. Yeah. So how do we treat mast Cell Activation syndrome? You’ve mentioned antihistamines, you’ve mentioned LDN not everybody knows what LDN is, so, you typically put patients on two different antihistamines.

Dr. Weinstock: Yeah. So, I do step one which is in my paper the primer for gi, unfortunately we didn’t put in in 2020 the use of Naltrexone at that point.  Even though I’ve been using it for years just decided not to. But virtually everybody in my group uses Naltrexone. Let’s talk about that. It’s an anti narcotic, [00:41:00] it’s an opioid antagonist. It’s a blocker of narcotics. It’s not a narcotic. It’s used in very low doses, either ultra low dose 0.1 milligram or one milligram, and move up to the best dose possible or maximum of 4.5 in general.  And basically what it does is it binds to the endorphin cells and the endocrine cells that make endorphins, met-enkephalins. And during that time, that is on those receptors, the cell just can’t do anything. But it does build up the machinery to build more endorphins and more receptors on other cells.  Somehow there’s a signaling device, and once the mass cell, once the, sorry, once the naltrexone comes off, after six hours, you get a surge of endorphins. So it helps give you pep, decrease [00:42:00] body pain decrease inflammation because it’s acting on the T cells, B cells, and mast cells. It also attaches to a receptor, a toll receptor that decreases chemical inflammatory mediators, which activate mast cells.  So, that’s the toll receptor. So it’s doing a lot of great things in combination with. H one, H two blocker. So that would be things like Zyrtec, ISOL and and the H two would be famotidine, used to be Zantac, but, so that’s H1, H2, and then you’ve got vitamin C and vitamin D. Then you’ve got over the counter flavanoids, which is a food product that decreases inflammation.  And there are things like lutein, quercetin, berberine, which is an herb. And then low-dose [00:43:00] naltrexone. So that’s five over the counter things in one prescription. And that’s step one. And there’s step 2, 3, 4. And then investigational medications.

Dr. Weitz: Are there other nutritional supplements? What about bifido probiotics, which some data indicate may decrease histamine release?

Dr. Weinstock: That’s, yeah. So there are many natural things: CBD, THC, histamine DAO reducing enzymes. Well, DAO may or may not be needed. Depends if they’re damaged to their small bowels damaged. I look for SIBO to treat SIBO patients. Right. I’ll be interested in hearing what you say about dysbiosis, so it is a tricky one for me.  And then I’ll look for things like mycotoxin disease, which you can check antibodies for if they’ve got it. You know, I just saw a patient the other day, a lifetime of psychological disturbances and [00:44:00] flushing and irritable bowel syndrome, bipolar who grew up in a moldy house–lived in the basement.  It was moldy there.  And then, you know, went to from one moldy place to another moldy place. And I looked at her and she was so horrible looking in terms of just saggy bags under her eyes, edema of her face, rashes. And this was just on a telemedicine call. I said, you know, I think this is all from the mold exposure.  She got out, she had a Friday telemedicine with me. She looks amazing. She’s doing a faith-based neural retraining, which we can talk about. But this neural retraining is putting the icing on the cake. She just can’t believe it. Her thought processes are normal. She has no depression, no [00:45:00] mania. It’s pretty amazing.  So she’s close to being cured. Not quite, but it’s amazing if you can get rid of the triggers, it’s an amazing thing,

Dr. Weitz: Right? I did some research for this podcast. One, another thing I found was certain amino acids such as glutamine, may counter histamine production.

Dr. Weinstock:  L-glutamine is good for repairing the leaky gut.  And anytime you’ve got a leaky gut, then certain food products are going to get through like gluten, dairy, maybe even histamine foods and activate mast cell activation syndrome. So yeah, I think that’s a good thing. 

Dr. Weitz: Alright. What about diet, low histamine diet? What other dietary strategies?

Dr. Weinstock: So you have to have some sensor now, I’ll just tell you Dr. Molderings, in a 2016 [00:46:00] paper on pharmacological approach to MCAS it’s a great article. It goes into depth of everything that’s been published at, to that point, 2016, of course didn’t have the GLP ones, which that therapy just came to us a year ago.  So anyway he says three weeks, no dairy, no gluten, low histamine. I mean, you can go crazy trying to come up with a diet like that. So I will usually say, no severe high histamine foods. Try the gluten-free and dairy-free and see what happens when you re introduce one after two to three weeks.  And then patients will often say, oh, I can tolerate gluten, I just can’t touch any dairy. Okay. So, so everybody’s different. The patient.

Dr. Weitz: Yeah.

Dr. Weinstock: Yeah, Ben, everybody’s different on that. And then patients can have the nightshade problems. And again, that was something that I never really got. Why somebody couldn’t have eggplant or potatoes or tomatoes.  Tomatoes certainly are high histamine, but the others, I don’t know. Some people do have mast cell reactions against particular foods.

Dr. Weitz: Alright. And then you mentioned EDS or Ehlers Danlos syndrome. For those who don’t know, these are patients who are especially hyper mobile, their elbows hyperextend, they can push their thumb back onto their wrist and they, they fit into a category of having certain chronic diseases and they seem to be related to mast cell activation syndrome as well,

Dr. Weinstock: right from the beginning.  Ma the mast cell secrete sec growth [00:48:00] factors, which make the tendons and ligaments and intraabdominal attachments lengthier. So it grows, it makes it grow. So that’s, so does that mean the likely reason does you have to

Dr. Weitz: develop some point in the life that wasn’t there before?

Dr. Weinstock: No, it starts as a child.  Oh, okay. As I say most you know, 99% of patients with MCAS are primary versus secondary, like long COVID and or pregnancy related. But the fact is that when you’re in utero or you’re, you know, a very small child infant, your ligaments may increase in laxity because you’ll also have mast cell activation syndrome.  One of the earliest symptoms of MCAS is colic now, not all colic, but some colic is due to abdominal pain caused by the mast cells. [00:49:00] So, EDS is very common. How do you treat a baby with mast cell? Well, first of all. Is the pediatrician gonna be interested in looking? I can relay what happened to my grandson, if you wanna hear that.  It’s pretty dramatic. I think it’s one of the reason why I think what I do is so important to me personally and others, if I didn’t have this in my wheelhouse, so to speak max would be suffering for decades before he was taken seriously. And then even then, there would be very few people who believed what anything was wrong with him, including

Dr. Weitz: his parents.  Yeah. Tell us about Max. So Max went to the pediatrician and was having colic. 

Dr. Weinstock:  Max started as a 2-year-old with a [00:50:00] DHD OCD. He’s the only kid that would ever eat a pizza upside down. He just had to do things his own way. You talk to him seriously upside down pizza. It sort of makes sense if you think about the taste buds being there.  But nonetheless he did things his own way. If he was watching a his iPad, you couldn’t get your in intent, his attention unless you actually yelled M-A-X-M-A-X and then he’d finally look up and say, what? And he, I said, what’s going on? And he says, well, it’s like, parties in my head where everybody’s screaming and I can’t hear anything else, which is really pretty dramatic for.  A, a neurological, a neuropsychiatric disorder. But what happened was he started getting panic attacks. He had to wear a hat and fake eyeglasses or otherwise he wouldn’t go to school. He’d have a panic attack and go crazy if he didn’t, [00:51:00] if he left his glasses at home. Wow. Then panic attacks became more and more frequent.  He became more and more anxious about stuff. Lots of stuff, lots of different things. Then multiple visits to the nurse for abdominal pain and nausea. And then I had said to Leah, let’s give back antihistamines and see what’s, you know, see if he gets better. ’cause it’s a challenge. Of course dad doesn’t know what the hell he’s doing.

And so she didn’t do what I asked her, but later on she said she heard a podcast like this with me going on and on about psych neuropsych stuff. And she says, dad, max has all those things you’ve gotta come down to down to Nashville and fix him. So I did. I gave him a hug and I was in shock because Max had lost so much weight.  He was down [00:52:00] 15% of his body weight at age 10. Wow. He hadn’t grown an inch. I sat with him, I talked with him. I said, do you bruise easily? He rolled over on the couch and he showed me his legs, bruises up and down both legs. No idea where those came from. He was itching his palm. He had which is not. A normal thing, of course.  And then we talked about the abdominal pain and so forth. So next step was to go to the pediatrician and the pediatric gastroenterologist rule out other diseases and to get mast cell biopsies of the small intestine with an upper endoscopy. And finally get blood tests. And one of the blood tests was elevated.  Then I started max on LDN, vitamin C, vitamin D, antihistamines, and ollin and virtually every symptom has gone away. Wow. He’s gained back. His weight looks normal. It’s, you know, dramatic. And he said it was immediate, and he doesn’t mind taking those five things because it’s all about feeling better and he feels so much better and he can eat food and not get ill, not have nausea.  What was he being diagnosed with? Nothing.  They had no idea. Nothing. I went to the pediatrician with him once when I was down there. You know, when I was called to help him, you know, I went with him to the dermatologist, sorry, to the pediatrician. And doctor had no clue. Wow. Interesting.  But many doctors don’t have clue because they’re not taught MCAS in med school. When they’ve got an open mind, they go into their own [00:54:00] silos. So somebody becomes a cardiologist. They might know about pots, but they don’t know about mast cell activation syndrome. Rheumatology. They might know about Ehlers Danlos syndrome, but they don’t know squat about fibromyalgia because it doesn’t get better with the four lousy medicines.  

Dr. Weitz:  Right.  Fascinating. Well, mast cell activation syndrome is underdiagnosed condition that we all ought to put on our radar. Become more aware of it. Start testing for, start using the surveys and start treating for it for especially the patients that haven’t resolved for some of the other conditions.  They came in to see us for like IBS and other functional gastrointestinal disorders.

Dr. Weinstock: Absolutely. And I hope that you’ll spread the word. I would like [00:55:00] to put something out to you guys that there’s a documentary that we produced. Okay. For the triad it’s called Understanding Stealth Syndromes.

Dr. Weitz: Okay.

Dr. Weinstock: And it’s posted on the LDN research trust.org. Okay. LDN research trust.org. Understanding cell syndrome. So if you’re a patient and you’ve had situations where your family just don’t believe there’s anything wrong with you because you have 20 symptoms, you know, watch it. Make them watch it. Hopefully I was saying yesterday at the lecture at my office, you know, it’s.  The believers are the moms. They stick with the daughters and it’s amazing and they’ve stuck through and it’s really important. But others, whether siblings, [00:56:00] cousins, uncles, aunts, you know, they just think, you know, she’s making it up and it’s really sad because what happens, doctors, family members, gaslight and ghost and ignore and put down these patients, and it, in my opinion, that’s all criminal.

Dr. Weitz: So this documentary you says is about the triad? The triad is, that’s EDS and MCAS. Okay. And POTS is postural orthostatic tachycardia syndrome. Tachycardia Syndrome,

Dr. Weinstock: and that’s where you stand up and your pulse goes up more than 30 beats per minute at 10 minutes standing, and you may faint or feel faint.

Dr. Weitz: And those patients often get a whole series of other chronic symptoms, pain in different parts of the body, and [00:57:00] fatigue and different things like that as well. And that’s because

Dr. Weinstock: 66% of POS patients have E-M-C-A-S as the underlying disease to their underly pots.

Dr. Weitz: And these patients potentially can be treated with antihistamines, low dose, and naltrexone, nutritional naltrexone.  Yep, yep. Et cetera. Yep. Oh I just wanted to mention, I, the thing I saw online about the glutamine was that because it’s a GABA producer, it counters some of the production of histamine. That was the thought that in the article I read,

Dr. Weinstock: I, I don’t know how much that. Interesting. And then what do you do about dysbiosis? Teach me,

Dr. Weitz: well, I mean, we’re talking about a patient who has SIBO like symptoms. [00:58:00] So they have stomach pain, gas, bloating, diarrhea, constipation, and the SIBO test is negative. And then we do a comprehensive stool test and they have overgrowth of certain bacteria, or they have fungal overgrowth or inflammation in their gut, et cetera.  So, typically we put ’em on a, we usually put ’em on a elimination diet to try to eliminate some of the food triggers unless we’ve done food sensitivity testing. And then we use herbal antimicrobials for two, three months, followed by gut rebuilding protocols like prebiotics, probiotics, fiber glutamine other gut healing nutrients.  So we’re basically trying to remove and replace and then re inoculate and repair using that sort of four R five r sort of concept of rebuilding the gut that Jeffrey Bland pioneered so many years ago. 

Dr. Weinstock: You using butyrate?

Dr. Weitz:  Yes, we use butyrate. Sometimes we use other short chain fatty acids. Some of the stool tests now have testing for short chain fatty acids that sometimes help guide that care.  That’s becoming a common thing, so we can see whether the person’s producing enough short chain fatty acids.  

Dr. Weinstock:  Great.

Dr. Weitz:  And, you know, we have our different combinations of herbal antimicrobials through experience and talking amongst other functional medicine practitioners. What seems to work best, you know, versus different sorts of bacterial overgrowth staff versus strep versus, you know, et cetera, et cetera.  Fantastic. It would be great if we had randomized control trials on all this stuff, but I don’t think that the makers of [01:00:00] berberine are prepared to spend millions of dollars on

Dr. Weinstock: studies. No. The GLP I tried to get Lily to fund a study on refractory MCAS patients with the low dose glp.  And they didn’t, they passed on that, let’s just say. Okay. Okay. But we published a article of 47 patients who were failing up to 13 different medications for MCAS. Started them on microdosing of GLP ones, and 89% of the patients got better, some within hours of getting their first shot, some within two weeks.  So I’m reproducing that study now with a larger number so far, 73 patients, and I’m applying for a grant for the fibromyalgia. Association and kind of narrowing it down. ’cause a lot of MCA patients look [01:01:00] like fibro, the top 14 symptoms and syndromes in fibro are covered by those in MCA. So it begs the question of what’s what and what causes what and what is what.

Dr. Weitz: Right? Yeah. Fibromyalgia’s been a confusing condition for many years and people have come up with different strategies that seem to explain part of it or most of it, but nobody’s been really clear what to do about it.

Dr. Weinstock: It’s a conundrum. Barely anybody gets dramatically better with one of the four FDA approved meds, and that’s because they’re just missing the mark.

Dr. Weitz: Right. It seems to be, at least used to be associated with chronic fatigue syndrome and, you know, it’s sort of the basket of explanations [01:02:00] for patients who don’t seem to improve with anything else.

Dr. Weinstock: Well, yeah, so you’re engaged me a lot today. Thank you. Thank you.

Dr. Weitz: Yeah. Good. So, how can our listeners or viewers get in contact with you?

Well,

Dr. Weinstock: I’m primarily doing, consultation consult for patients who live in Missouri. ’cause that’s where my license is. Okay. But I’ll see some people from Illinois and Kansas. Okay. And then you know, if I see somebody else or somebody writes to me or whatever, I could try to find a provider in our consensus group two in another state and who’s still taking patients.  But virtually all those doctors, all but me and one other are concierge type and do it by the hour. And I have to do it by insurance because I’m still a functioning [01:03:00] gastroenterologist doing procedures. So, you know, in the future I’ll be doing less procedures and more consultations on MCA patients.  Do you have courses or other training for practitioners? I’ve got one coming up in January. It’s a program, it’s gonna be mainly about low-dose Naltrexone. And then I have not yet heard, I usually a four m is one that has asked me and then to speak. And then Paul Anderson usually has courses one, two times a year.  And I speak at his conferences as well. So, but those kind of conferences are, you know, limited to the doctors or n naturopaths, I’ll tell you that. Naturopaths. Have really impressed me. And then there are a number of chiropractors as well. Because the fact is [01:04:00] there’s so many, and you’ll see this when you look at Ben’s website soon I’ll give you my approach to MCAS.  So many of ’em are over the counter and diet related, right? So you can get a lot better with some OTCs and totally natural things and ruling out SIBO and looking for mold and treating that. So, right now we don’t have enough doctors that believe in MCAS to help you out, so to speak. Right. Alright, great.  And your website is lw sorry. The website the website is gi doctor.net. It’s got some of my publications, but frankly, if you just Google Weinstock, MCAS, you’ll come up with quite a number. Any other reference you were gonna give us was for low dose Naltrexone. Naltrexone, [01:05:00] yeah. So, I will be sharing that with you post-haste.

Dr. Weitz: Okay, sounds good. Thank you so much, doc.

_________________________________________________________________________________________________________________________________________________________

Thank you for making it all the way through this episode of the Rational Wellness Podcast. For those of you who enjoy listening to the Rational Wellness Podcast, I would very much appreciate it if you could go to Apple Podcast or Spotify and give us a five star ratings and review.  As you may know, I continue to accept a limited number of new patients per month for functional medicine, if you would like help. Overcoming a gut or other chronic health condition and want to prevent chronic problems and want to promote longevity, please call my Santa Monica Weitz Sports Chiropractic and Nutrition office at 310-395-3111 and we can set you up for a consultation for functional medicine and I will talk to everybody next week.