Get a Second Opinion Exploring Mast Cell Activation Syndrome with Dr. Leonard Weinstock

IBS & SIBO SOS™ Summit Get a 2nd Opinion: Exploring Mast Cell Activation Syndrome with Dr. Leonard Weinstock Shivan Sarna:

Hi, I'm Shivan Sarna. And I'm here with Dr. Leonard Weinstock. He is a gastroenterologist who is a specialist in a lot of things including SIBO and IBS. But we're going to be talking today about the big picture and mast cell activation.

If you're not familiar with that term, it's really no surprise. He’s touring the country right now at conferences actually educating people around the world about this topic and working with other top researchers. He’s here to educate all of us and definitely get our minds thinking about some other possibilities about what else is going on.

Thank you, Dr. Weinstock for being here as always.

Dr. Weinstock:

Shivan, thank you for inviting me.

Shivan Sarna:

Oh, my gosh! Highlight, highlight… big time.

So, I know you're really excited about mast cells and mast cell activation syndrome. There are a lot of people who've never even heard of it before.

What is it?

Dr. Weinstock:

Okay! So we have this particular white blood cell that normally lives in precursor cells in the bone marrow. And you don't get it in your bloodstream unless something happens. It comes out normally when there

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is inflammation or injury, burned or broken bone. And then, that stimulates activity in the bone marrow to manufacture these white blood cells called mast cells. They travel to those interfaces.

And so, if you have inflammation in the small intestine, the dendritic cells are going to activate and send a signal to the bone marrow to get the mast cells to the site. And sometimes, it's good. And sometimes, it's bad. It kind of depends on what type of mast cells you get there.

And the mast cells that many people get who are suffering from mast cell activation syndrome for decades and decades are ones that have gone under genetic mutations in the bone marrow. And so these mast cells come out, they live in the tissues (which we’ll talk about, and they can live for months to years there, creating havoc.

Shivan Sarna:

So, is it kind of like when someone has an allergic reaction, it's an over-reactivity of something that's an immune response? It’s usually good, but then it goes over the top?

Dr. Weinstock:

Indeed! Think about these individual areas. And so when I look at a patient, I'm looking at their eyes, their nose, their mouth. I’m looking at their skin, talking about asthma, hives, chronic eye irritation, ear irritation, ringing of the ears, vertigo. And then, we're looking at the muscles in general, constitutional aptitude with regard to fatigue.

Muscle pain and fatigue are the two most common symptoms of mast cell activation syndrome. And of course if I said, “What's muscle pain and fatigue to you? What syndrome is that?”

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Shivan Sarna:

Oh, it could be chronic fatigue…

Dr. Weinstock:

Yeah, there you go, and fibromyalgia.

This may be the underlying mechanism of action for those syndromes.

And then, you get down to the gut, and it's very common to have nausea, difficulty swallowing, pain, bloating, diarrhea, constipation through various mechanisms (which we can talk about).

And then, you go down further, the skin has various problems—itching all out of the blue.

The other mast cell symptoms will be when it affects the bladder. So if I said, “Okay, what is interstitial cystitis?” you might say…?

Shivan Sarna:

Well, it's related to SIBO, I know that.

Dr. Weinstock:

Certainly! Many SIBO patients, IBS patients have interstitial cystitis, but it’s inflammation.

Shivan Sarna:

Inflammation, sure.

Dr. Weinstock:

And guess what? The mast cells are increased in the bladder of patients with IC and they're also thought to be increased in chronic prostatitis. And we know that men with sterile, chronic type III prostatitis have prostaglandins in their urine, and the mast cell makes prostaglandins which is a cause for pain.

Shivan Sarna:

This is big! This is huge.

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Dr. Weinstock:

It’s enormous, it's enormous.

So, I have a question and answer Excel spreadsheet that I have on my website that people can look at. And it goes through the common 48 symptoms that people can have (and people can have more than 48 symptoms). [05:12] Dr. Weinstock:

But I have patients commonly see me for gastrointestinal problems, irritable bowel syndrome, that can't be fixed by anything. And I used to say, “Okay. Well, you've got your old bowel. We’re going to go through XYZ treatments. We're going to do a breath test. We’re going to treat you.” And they may or may not get better. But the ones that don't get better, then I now start thinking about mast cell disease. I think about postural orthostatic tachycardia syndrome. And I do a flexibility test to look for Ehlers-Danlos syndrome.

Shivan Sarna:

Okay, let me just ask you one circle-back question. Which came first, the inflammation or the mast cell activation?

Dr. Weinstock:

Okay! So the chicken in the egg is a fabulous question always. We don't ask that question enough. So hopefully, we’ll have time to bring that up at the SIBO conference. We always have to look at the underlying cause for SIBO. It’s not enough to tell a patient, “Oh, you've got an abnormal breath test. You’ve got irritable bowel, bloating and gas. You have SIBO.” That’s not enough. So you have to look for the three or more causes for SIBO to say, “Okay, this is something that we can try to correct”—if it's a motility

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disturbance, if it's autoimmune, if it's anatomical, if it’s adhesions and so forth.

But I am doing research now that’s going to look at the incidence of small intestinal bacterial overgrowth (SIBO). And my preliminary study shows that 47% have abnormal breath test who have mast cell activation syndrome.

Shivan Sarna:

Wow! This is really exciting! I mean, it’s exciting and depressing at the same time. But getting answers is exciting.

Dr. Weinstock:

So, there is primary mast cell activation syndrome. And the master of the mast cell is Dr. Lawrence Afrin. He's written a book that's available on Amazon. And it goes over case histories and really goes into this in-depth for the lay public. And then, there are things on the Internet, podcasts. So if you type in into YouTube “MCAS, mast cell…”

Dr. Weinstock:

M-A-S-T is the word.

Shivan Sarna:

Okay. Okay, good.

Dr. Weinstock:

Dr. Afrin wrote an article about neuropsychiatric expressions of mast cell activation syndrome.

And the mast cells live in the brain and control the blood brain barrier, the BBB. And if the mast cell is active, then it lets in invaders and lets in T cells and B cells. And so, in his neuropsychiatric article, he talks about the association with autism, depression, anxiety, panic attacks, any number of…

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Shivan Sarna:

Migraines?

Dr. Weinstock:

Oh, headaches are big, gigantic! Headaches are very common. It’s one of the top symptoms of mast cell activation syndrome. We can call it MCAS. So, anyway, I took a 3-day course with Dr. Afrin with 30 individuals in California. We had this intensive meeting. And he's written the most articles along with Dr. Molderings in Germany. And Dr. Molderings did studies suggesting that 17% of the German population have MCAS.

Shivan Sarna:

Wow! And we don’t have the same kind of statistics simply because we haven't been studied in that same way?

Dr. Weinstock:

Correct. It’s a smaller population.

Shivan Sarna:

Yeah.

Dr. Weinstock:

So, Dr. Afrin, in his writings, says 1% to 17% of the population have it.

So, list all the syndromes that you've been interviewing people about, okay?

Shivan Sarna:

Mold, Epstein-Barr, Lyme, psoriasis, restless leg…

Dr. Weinstock:

Yeah, interstitial cystitis, restless leg syndrome and so forth. I mean, anything with a “syndrome.”

Shivan Sarna:

Right, irritable bowel syndrome.

Dr. Weinstock:

Right, irritable bowel syndrome. [10:00]

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Dr. Weinstock:

In fact, in 2004, the first gastroenterologist to investigate the mast cell with irritable bowel syndrome took the lining of the colon of people with IBSC and IBSD and did biopsies and showed that there were more mast cells present. And the closer those mast cells were to the nerves, the more pain they had.

And then, when he took the biopsies, homogenized it, looked it in the lab, the more histamine and tryptase which come from mast cells, the more pain the patients had. So, that was the first thing.

Now, that should have rocked boats. It was really in a top tier or ​the top tier GI journal called ​Gastroenterology.​ But it really didn't go anywhere.

They did another study in 2007. And then, there were a scattering of studies.

But MCAS (mast cell activation syndrome) really had a case report in 2008, case series with Beth Israel, with gastro and allergists looking at 20 patients in 2011, and then a smattering of little articles. And then, 2016, Dr. Afrin came out with an article about his patients. And then in 2017, he looked at 413 patients that he’d followed and looking at all the characteristics. And really that's the seminal article, really bring it onboard.

And yet because it involves every system of the body, and universities are not integrative—their GI, their allergy, their hematology, et cetera…

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Shivan Sarna:

…silos, yeah.

Dr. Weinstock:

…they have blinders on. And this is not being taught in medical school.

And it's new. It’s a baby on the block. But it's been there for decades.

And the infections that you mentioned play an important role. And the mold even plays an important role in terms of activation of the activated mast cell.

Shivan Sarna:

Of course! That makes sense.

Dr. Weinstock:

If you talk about colic and food allergies and baby switching to different formulas and so forth, those can be expressions of mast cell activation at an early age.

I mean on this topic, I have a person who is 21 who came to me from California

for

a consultation. And she was a brilliant infant

literally—could sing and talking to. And then, they went to India, and they got her heavily vaccinated. And bang, she became autistic.

She had numerous GI symptoms and difficulty eating, and then very severe difficulty communicating. And then, she felt more and more symptoms. And when she was exposed to allergens, she didn't break out in hives. She’s had worsening GI symptoms and neuropsych changes like biting herself and things like that.

And then, she just had some weakness. And so when I examined her, I

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checked her pulse, lying and standing, she had a blood pressure of 110/60 and a pulse of 45. And then, she stood up, her pulse went to 145.

Shivan Sarna:

Wow!

Dr. Weinstock:

And I said, “She’s got POTS, postural orthostatic tachycardia syndrome.”

Shivan Sarna:

…meaning when she stands up, there is a…

Dr. Weinstock:

…a tachycardia. And she gets weak. Then the mother said, “Oh, that's why she wants to sit down a lot or she clings to me.” So I said, “Okay.

Well, mast cell disease (MCAS) can cause POTS. Let's start treating her.”

And so, she had a month of low dose naltrexone (LDN), my favorite medicine…

Shivan Sarna:

My favorite medicine…

Dr. Weinstock:

Yeah. That made her autism a lot better after just one month. And then I controlled her pulse with propranolol. And she was able to eat and had much more strength. And now we're adding more and more mast cell-designed therapy basically, going after the hyperactive mast cell.

[15:01]

Dr. Weinstock:

So, here's a case where she probably had mutated mast cells, just a spontaneous genetic mutation that kept on outpouring mass cells into the body. And it goes wherever it wants. It just sprinkles around—in her case, in the brain—to account for the changes that occurred with autism.

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Shivan Sarna:

…with vaccines!

Dr. Weinstock:

And then, brain on fire triggered with vaccines. And we can talk about POTS and vaccines too and autoimmune conditions. But the combination of that, and continuous outpouring of mast cells, has led to the demise of this poor 21-year old.

But she's changing. She's getting better with mast cell directed therapy.

And so it is exciting. Her biopsy showed mast cells. We’re waiting for her urine and blood testing to help confirm it. But I'm just treating her empirically and she's getting better. So this would be one of those great cases of the year.

Shivan Sarna:

Yeah. I know you like your cases of the year.

Dr. Weinstock:

…cases of the year.

Shivan Sarna:

Yeah. I’d like to be the case of the year too very soon.

Dr. Weinstock:

Very good! So, we'll talk about that.

Shivan Sarna:

I’m on my way to come see you right now.

Dr. Weinstock:

So, the chicken and the egg…

Shivan Sarna:

Yeah.

Dr. Weinstock:

So, there are some patients who go out hiking and get a tick bite and Lyme. And that triggers mast cell activation. And maybe it mutates, and

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then it becomes a chronic problem. And what you're suffering from is not necessarily chronic Lyme, but chronic MCAS. And then, there are patients like this poor, young woman who was probably affected by her abnormal mast cells. And then, that caused severe activation with secondary mast cell activation by triggers, namely the vaccines.

Shivan Sarna:

Could the vaccines have—let's say she didn't have the spontaneous genetic mutation, then she gets the vaccinations (which I'm not a huge advocate or pro/con vaccines because it's not my area at all of research or learnings), could the vaccinations have prompted this mast cell activation syndrome without it having a precursor, spontaneous genetic mutation? Does that make sense?

Dr. Weinstock:

Possibly.

Shivan Sarna:

Okay.

Dr. Weinstock:

I mean, if you believe the pediatricians, they’ll look at thousands and thousands of patients, and they’ll say they’re safe. But as an interesting example, Gardasil—which, hopefully, there’s not a kind of gang that I couldn't use the word ​Gardasil w ​ ho’s going to go after me.

Shivan Sarna:

I hope not.

Dr. Weinstock:

But Gardasil is different.

Shivan Sarna:

What is that? What is that?

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Dr. Weinstock:

So that is the HPV vaccine. It’s different formulation than it is in Europe.

And so Gardasil can trigger POTS by triggering autoimmune antibodies.

It's one of the known causes of postural orthostatic tachycardia syndrome due to antibody formation. And in Europe, they give the HPV vaccine, which is a different formulation, without the additives—and I think even MSG, somebody was telling me—and they don't get POTS in Europe from the vaccine.

So more and more things are getting into the bloodstream. And perhaps getting too many at one time is too much for our immune system and gets things activated.

Shivan Sarna:

…and depending on your environment, if there was mold and all that.

Dr. Weinstock:

So, mold activates.

Shivan Sarna:

Right.

Dr. Weinstock:

Dr. Dempsey who is the partner for Dr. Afrin in his new practice—he moved from the University of Minnesota to New York in an integrative type practice—

Shivan Sarna:

Oh, neat!

Dr. Weinstock:

She sees a lot of mold in that area of New York. And it activates the mast cell.

So, the people who talk about mold, it's important. But why is it important?

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Shivan Sarna:

Right! Well, we were just talking to a mold expert. It was amazing. But she said if you're predisposed to mold, it's going to be a problem for you.

If you're not predisposed, 75% of the population, it’s not a problem for them. So here we go!

Dr. Weinstock:

So, think about the patients. And to me, for an extent, if I'm exposed to mold, I get asthma. If I don't, I might get it with perfume. And so, therefore, I know I've got some mast cells in my lung. I don’t have the whole syndrome, but at some point, I had a sprinkling of mast cells come out. [20:18]

Dr. Weinstock:

What do I say about ​sprinkling? W ​ ell, the fact is that the mast cell is dormant in the bone marrow. You don't activate until something happens.

And then, they come out, and then they go where they want. They usually go to the interfaces—so to the nose, to the mouth. Burning mouth syndrome is a mast cell disease. And as proof, if you put burning mouth syndrome into PubMed, you're going to come up with Dr. Afrin’s case report of two patients with it. And then, there’s another ENT article that shows it, that what is idiopathic burning mouth syndromes is not so idiopathic, it’s MCAS. So, you have to look. If you go to my website, GIDoctor.net, Second Opinion Clinic, go down to Mast Cell, you'll see a list of questions, an Excel spreadsheet, of all the kinds of things that are present in patients with mast cell disease.

And there's even more and more and more. But those are 10% or more symptomatology.

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Shivan Sarna:

Okay. I have several questions as you can imagine. How do you test for it?

And how do you treat for it?

Dr. Weinstock:

Okay, excellent! So in terms of making a diagnosis, you look at two major criteria, and then there are five minor criteria.

So, the two major criteria would be the symptomatology in two or more organ systems that are classic for mast cell symptoms. It could be asthma, it can be irritable bowel syndrome, it can be hives and itching. Let’s see, there are three systems; and then, biopsy proof of excess mass cells in the gut or bladder—not in the skin interestingly enough. If you have hives, and you do a biopsy, you’re not going to see mast cells. You might see it in other mast cell diseases which are more rare like mastocytosis. But we're talking about an extracutaneous phenomenon, namely the mast cells are somewhere in the gut, you eat shrimp, and guess what, you get hives because histamine has been released by your gut mast cells, and that's causing hives. So that's what happens—or anaphylaxis. So, anaphylaxis is a big one.

Shivan Sarna:

That’s for mast cell.

Dr. Weinstock:

Yes.

Shivan Sarna:

Wow! Okay. It’s all coming together.

Dr. Weinstock:

Absolutely! So, anaphylaxis. In fact, Dr. Afrin has some anaphylactoid patients who keep on going to the hospital using epipens like crazy. And

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he came up with an idea of continuous Benadryl infusion. They get a pump, and then that's kept them out of the hospital.

Okay! So, you had two major criteria, the symptoms, the classic symptoms, and the biopsy, or you get the symptoms and one or more minor criteria (which I’ll go over in a little bit) or three minor criteria.

Basically, you're going to have a syndrome of symptom complex. So you're always going to be thinking about it with the symptomatology of two or more organ systems involved.

But the minor criteria could include response to therapy. So if you give somebody famotidine and loratadine, H1 and H2 blocker, and a lot of those symptoms get better, that counts as a minor criteria.

If you test their urine and blood for chemical mediators—so chemical proteins that are derived from the mast cell. And we can do five different ones in blood and urine. But the trick is that mast cell can secrete over 200 different chemicals. In the lab, we can only commonly test for five. But in any regards, if you have let's say the symptomatology, and you've got evidence by blood and urine, bang, you've got MCAS. And if you're a lucky one, which usually is a majority of patients, you respond to mast cell therapy, you’ve got it. [25:04] Dr. Weinstock:

And then, there's histological characteristics for the other three phenomenon of minor criteria.

Shivan Sarna:

What’s a histological…

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Dr. Weinstock:

So, if you look under the microscope, if you do gene testing, if you do a bone marrow, those are the three other minor criteria. And so I've got that summarized in a Powerpoint on the same site, GIDoctor.net under Mast Cell in the Second Opinion Clinic. So just scroll down to the bottom, you'll see.

Shivan Sarna:

Very cool!

Okay. Before we go on, I just want to ask a couple of things. You talked about a biopsy. So it sounds like some of those ways of figuring out if you have it are a little bit less invasive…

Dr. Weinstock:

Right!

Shivan Sarna:

And then, some are more invasive like a biopsy.

Dr. Weinstock:

Yeah. So, some people are afraid of having endoscopy again. But if you’ve had a biopsy—and tell me a patient who's seen gastroenterologists and not been put through an endoscopy or colonoscopy (and they often biopsy because, hey, that’s what we do), we don't do the stain for the mast cell unless you're a new age gastroenterology and understand what's going on.

Shivan Sarna:

You said that we can reference back to older biopsies with some tissue that's been saved in paraffin. Is there like a bank where my tissue is sitting right now?

Dr. Weinstock:

Yes, absolutely.

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Shivan Sarna:

They didn’t throw it out?

Dr. Weinstock:

No! A pathology department will keep your specimen or will keep your slides for decades actually.

Shivan Sarna:

Good!

Dr. Weinstock:

And they keep the paraffin blocks. So, in other words, they get a biopsy, a bunch of biopsy, they put it in wax (paraffin), and they slice it. And then they put it under the microscope on a slide. But because that's your tissue, they keep it. So the pathologists are fairly methodical. And so it's in a lab.

Shivan Sarna:

Somewhere… find out.

Dr. Weinstock:

No, in the pathology labs or wherever the pathologists works, their office, the hospital, pathology department…

Shivan Sarna:

Yup…

Dr. Weinstock:

You’ve got your biopsy sitting there.

Shivan Sarna:

Who knew? Okay.

Dr. Weinstock:

And this can be a tip-off. The people who get endoscopy or colonoscopy and feel miserable afterwards are the ones who likely have mast cell activation syndrome because they’re allergic to different chemicals in the propofol which is very commonly used.

Now, if they received Versed, that actually stabilizes a the mast cell. So they may not have reacted to the procedure…

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Shivan Sarna:

Is that a different anesthesia?

Dr. Weinstock:

It’s like Valium.

Shivan Sarna:

Oh, okay.

Dr. Weinstock:

So, commonly, or half the country uses propofol. It’s a great sedative. But it can activate mast cells. So when I have a patient I suspect of having MCAS, I get them treated with some Benadryl and Pepcid and Versed (it’s like Valium) beforehand. And the ones that are highly reactive, and have known anaphylaxis, I can give steroids to before they have their endoscopy—immediately before.

Shivan Sarna:

And are they on propofol as well? Because that counteracts the propofol.

Dr. Weinstock:

That counteracts the different chemicals, the proteins, the egg protein that’s in a propofol.

Shivan Sarna:

Fascinating! [28:46] Right, okay. So, I know people are listening and going, “Wait! I had a biopsy. There's a stain.” Tell me the name of the stain again.

Dr. Weinstock:

So, CD117. That is an immunohistochemical stain. It costs the same as a normal stain, what we call the H&E stain that we normally look to highlight the anatomical features of the biopsy.

Shivan Sarna:

So, you're either having that done, or you can go back in time. Thank goodness they're holding on to your tissue. Hopefully, that hospital is still

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there, and you can find it. You have someone who's going to do that due diligence.

And let's say, there it is, it shows a lot of mast cells. Now what do we do about that? Other than having sort of a happy dance, what are the treatments?

Dr. Weinstock:

Oh, so there are many treatments. First, you look for triggers. You perhaps get away from the mold or remedy your household. And then, they have a lot of things going on with mold. Many things are new to me, but I’m learning. [30:07]

Dr. Weinstock:

You look for other triggering aspects. So, a number of medications that you might be taking actually may be making you sick because mast cell patients have a lot of allergic-type responses, so reaction responses, to the excipients, mainly the fillers. It could be lactose, it could be soy, it could be food dye colors in…

That’s why some patients do well with ranitidine and some do well with Pepcid or famotidine. But some need to go to a compounding pharmacy to get pure famotidine mixed in almond oil or water and to get it that way.

Shivan Sarna:

What's famotidine?

Dr. Weinstock:

Famotidine is Pepcid . It’s over-the-counter.

So, believe it or not, you can get a lot of yardage with H1 and H2 blockers. So that would be the ranitidine, Pepcid, H2, that you take for heartburn and in combination with H1 blockers. So that is the short-acting

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Benadryl type medicines. So that would be—I can use names—Claritin, Zyrtec, Xyzal or Allegra for instance.

So, a good H1/H2 blocker is the first step because what you're doing—one of the big components, proteins, that comes out of the mast cell is histamine. And it's not just for the itchy person. You can think of that histamine itching. But histamine is a nociceptive protein. Nociceptive is pain. And so if you can block the histamine receptor, you can reduce pain.

So, that's step one. That’s step two in a way.

Step one is the diet and the environment. So you look for allergens in your diet and in your food. A number of patients will do well with a gluten-free diet, wheat-free diet, yeast- and dairy-, protein-free diet. So I test those out.

And then, I have them look at their meds and say, “Okay, when you introduced this med for depression or for whatever, did your symptoms get worse?” Think about the medications you’re taking: “Question. Could there be a filler that I'm allergic to?” So, controlling that is important.

And then, stress also activates mast cell. So learn yoga from Shivan Sarna and go back to your tapes or whatever you’re doing.

Shivan Sarna:

Namaste. Yes!

Dr. Weinstock:

So, control stress. It makes a big difference too.

Shivan Sarna:

Low histamine diet?

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Dr. Weinstock:

A low histamine diet can make a big difference as well.

Why? Why. interestingly enough, the mast cell has H1, H2, H3, H4 and H5 receptors. So if you're eating histamine, you may be activating the mast cells.

So, the mast cell has numerous receptors—IgE, IgG receptors. It has receptors for little chemicals that come off the T cells that can be activated, as you know, in SIBO. T cells are big because the TNFL for an IL-6, those cytokines can activate the mast cells. So our SIBO patients who have leaky gut and are activating their T cells, creating those cytokines are activating the mast cells. And the mast cells in turn create histamine and tryptase and other chemicals, prostaglandins and so forth which are inflaming the nerves in the gut. And guess what? Those nerves go back to the spinal canal and cause sensory pain and back and forth pain. And guess what? That’s an example of a cause for visceral hypersensitivity which is part and parcel of irritable bowel syndrome.

Shivan Sarna:

What about the MMC, the migrating motor complex?

Dr. Weinstock:

So, this is what I’ll be talking about today at the symposium, is that the mast cells also live in conjunction to blood vessels and nerves. It’s not just in the skin, it’s not just in the mouth and in the gut, but they live in those nerves. And by secretion of one or more of 200 or more chemicals, they can cause autonomic dysfunction. [35:24]

Dr. Weinstock:

So, if you’ve got paralysis because you’ve got let’s say too much sympathetic activity, and it is well-known that mast cell cause 33% of POTS, and POTS is an autoimmune disease of sympathetic overdrive,

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we’re not going to have good peristalsis. And if you don’t have good peristalsis like people who have scleroderma or diabetes, what do you get?

Shivan Sarna:

SIBO.

Dr. Weinstock:

SIBO, right. SIBO is the end game.

Shivan Sarna:

Right.

Dr. Weinstock:

But there’s the prodrome and the ideology. So what I’ll be proposing in my research is now going to be focused on how many patients with POTS and mast cell disease have SIBO. And also, I’m going back to one of the syndromes I like to research which is restless leg syndrome and how many patients with POTS have restless leg syndrome. So, I’m doing this study with Dr. Walters in Vanderbilt University to do that.

And, then I’m looking at my mast cell patients, my MCAS patients, and I’m looking at restless leg syndrome and SIBO.

Shivan Sarna:

Wow! Okay. This is making me think of post-infectious IBS. So could this, the aggravation from post-infectious IBS with those two antibodies that IBS check test for that Dr. Mark Pimentel developed be related to mast cells also?

Dr. Weinstock:

Yes.

Shivan Sarna:

Okay, just checking my thinking here.

Dr. Weinstock:

Okay. Well, first of all, you created an insult to the gut lining. Let’s say you never had a single symptom in your body. You get the campylobacter

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and you get your IBS from that, and it’s due to autoimmune disease, namely the anti-vinculin which destroys the interstitial cells of cajal, you don’t get your migrating motor complex, and you get bacterial overgrowth. That bacterial overgrowth causes inflammation on the lining.

You get increased intestinal permeability. You have bacterial byproducts like glyco polysaccharides go into the lining that activates the dendritic cells which calls out to the bone marrow, “Hey, get your mast cells in here and help me out deal with this inflammation.” And your T cells get activated. And your T cells become memory T cells. And then, maybe your mast cells coming out of your gut have mutations that make them live longer and become more active.

So now you have two effector cells, the T cell and the mast cell in your gut lining. And you’ve now got the bacteria on the outside creating gas and bloating, but you have the two effector cells with other diseases and chemicals affecting you systemically. And you have irritable bowel syndrome forever with SIBO and visceral hypersensitivity forever because of that.

Shivan Sarna:

Okay. So, let’s say this is really sounding familiar to a lot of us, and then that aggravates the Lyme that might be old. And that sort of reactivates.

Dr. Weinstock:

Or the Lyme reactivates, or the Lyme activates.

Shivan Sarna:

Oh, which came first?

Dr. Weinstock:

Well, if you’ve never had a single problem, and you get a tick bite, and you get one of now five different rickettsial infections, and that activates the bone marrow to be actively generating mast cells, and they get a

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mutation so that they become a persistent problem, you've got secondary MCAS from Lyme.

But let's say you’ve had let’s say SIBO, and you’ve got activation of the mast cells, or you’ve got colonic dysbiosis, or near birth, you’ve developed diseased, mutated mast cells, then that Lyme is going to give you secondary and worsening complications.

Shivan Sarna:

Got it, got it.

Dr. Weinstock:

So, you have to treat both things.

Shivan Sarna:

Gotcha! Okay. [40:14] So then let’s say people can’t come see you or Dr. Afrin—by the way, where is Dr. Afrin in New York because I can already hear people asking that question? He’s in the city?

Dr. Weinstock:

No, no. He’s in ​Armonk​. It’s a half hour outside of the city or so. And Dr. Dempsey is with him. So, it’s the pair of them. Dr. Dempsey is an integrative doctor. Dr. Afrin was basically a researcher his whole life, a hematologist. And now he’ll see a mast cell patient and spend four hours with two patients a day going through that.

Now, I can't see in my insurance-based traditional practice. But I’ll basically spend an hour with a patient.

Shivan Sarna:

That’s one time.

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Dr. Weinstock:

So, now being cognizant of this, it’s crazy.

But what I want to do is I want to teach people because they've got to take it under their belt. Now the allergists should take this under their belt and really run with it. But they don't quite get it because there's a blood test called the tryptase level which is one of the most important chemicals that the mast cell will secrete. And if you've got a disease called mast cell cytosis which is basically a malignant mast cell disease, your tryptase level will be elevated. But the allergists—and plenty around my part of the country and elsewhere—will measure the test and say, “It’s normal. You don't have mast cell activation syndrome. But they didn't read Dr. Afrin’s article which show that in 400 patients, only 15% had an abnormal tryptase level. So the allergist have to be educated.

Shivan Sarna:

Is that also ear, nose and throat people.

Dr. Weinstock:

Some.

Shivan Sarna:

Because I go to my ENT for allergies. I didn't even know there was an allergist doctor.

Dr. Weinstock:

Oh, yeah, allergists deal with hives and asthma and food allergies and so forth. So basically, allergy, immunology is one of the subspecialists of internal medicine.

Shivan Sarna:

Okay. Can I can I go to PubMed and print out Dr. Afrin’s article we’re talking about.

Dr. Weinstock:

Yes, absolutely.

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Shivan Sarna:

Okay. So, PubMed, you can find it online.

Dr. Weinstock:

And you can find it online. On YouTube, he’s got two of his lectures, powerpoints there as well. And then, I’ve listed my powerpoint for mast cell activation syndrome that I just gave to integrative doctors. So, I'm hoping that the integrative doctors who embrace new things, they'll be the ones to jump into this and start playing around.

There are, unfortunately, many medications that can be used, but without predictability. Although there are some things like if a patient has asthma and MCAS, I’ll give montelukast. It just makes sense. We often use singulair montelukast for asthma. But it doesn't always work because maybe other chemicals are causing their bronchioles to contract that don't operate on that pathway. So, you always want to have the H1/H2 blocker.

And then, I often will go with vitamin C and D which can stabilize the mast cell. And then I will often give quercetin which is a natural agent to help with allergies because it stabilizes the mast cell—ketoprofen and on and on and on.

And then, there are some severe patients that require very intense, expensive medications. But that's actually all listed on my powerpoint.

Shivan Sarna:

Okay. So you can print that out and take it to your local doctor if you wanted to at least get the conversation going.

Dr. Weinstock:

Get the conversation going. You have to find an open-minded doctor.

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You can see an allergist. An allergist will know about MCAS. Will they know that the testing that they order is insensitive? Maybe not.

So, the urine work-up, so their 24-hour urine test, is predictable of 15% .

The blood test, chromogranin a, the histamine, heparin, and prostaglandin blood test and histamine blood test are positive in about 50% of patients.

[45:17] Dr. Weinstock:

So, let’s say you don’t have a biopsy, you don’t want to do an endoscopy, you have the classic symptoms, but you want to be diagnosed with this condition so people can take it seriously and start working with you, you’re going to want to get tested. But you have to realize that 50% of people will have negative testing.

Now, if you repeat it again and again, you may get higher. But you have to understand, and the allergist has to understand, that the blood test for tryptase is only going to be abnormal 15%.

Shivan Sarna:

And those are people with a condition that's like through the roof, right?

Dr. Weinstock:

It can be through the roof, or their tryptase during an attack may increase by 20%—from normal to 20% more, but still in the normal range. So sometimes it's very helpful to wait to get your blood test until you’re in a crisis mode. And God forbid that you’re in a crisis mode, but we get help.

Shivan Sarna:

Wow! This is truly brain-changing, thought-provoking, hopeful… it’s very hopeful.

Dr. Weinstock:

Hopeful. Can I talk about EDS?

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Shivan Sarna:

Please do. So explain what EDS is because it’s not erectile dysfunction.

Dr. Weinstock:

Right, that’s ED.

Shivan Sarna:

That’s ED. We’re adding the S. That’s not ED-plural.

Dr. Weinstock:

Well, H-EDS is ​hypermobile Ehlers-Danlos syndrome​. So they’re our connective tissue diseases, 13 different varieties ranging from Marfan syndrome with the tall/thin people who get aortic aneurysms and vasculature to the more common 1% to 2% of the population. We’ve got people who get into yoga and are much more flexible, 10 times more flexible.

Shivan Sarna:

Like Cirque du Soleil.

Dr. Weinstock:

Cirque du Soleil, those are all EDS people. The great yoga people who can put their hands underneath their feet when they’re bending forwards. So they’re bending down, touching their hands to the floor without bending their knees, moving the pinky back more than 90…

Shivan Sarna:

More than 90? I’m almost at 90.

Dr. Weinstock:

Ninety or more, right. Bringing your thumb back to touch your wrist like you can. And look how bad I am. So if you can bring it back there.

Hyper-extending the elbows so you’re more than 90 degrees and more than 180 degrees. Relax your…

Shivan Sarna:

Oh, relax it.

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Dr. Weinstock:

And then, lots of stretch-ability.

Shivan Sarna:

Is that a lot?

Dr. Weinstock:

Absolutely, that’s a lot.

Shivan Sarna:

Is it?

Dr. Weinstock:

Yeah.

And then, the knees. Standing up, the knees go back. And then, a history.

Shivan Sarna:

Hyper-extended knees.

Dr. Weinstock:

Yeah. And then velvety skin.

Shivan Sarna:

Am I velvet?

Dr. Weinstock:

And then there’s some changes on the heel—little, yellow spots on the heel. If you look at your heels—she’s looking on the back of the heel, on the back of the heel. [48:28]

Shivan Sarna:

On the back of the heel?

Dr. Weinstock:

Yeah, right there, this little yellow thing right here, right?

Shivan Sarna:

Yeah?

Dr. Weinstock:

That’s one of those.

Shivan Sarna:

What is it? It’s one of those what?

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Dr. Weinstock:

It’s fat. It’s a touch of fat.

Shivan Sarna:

That is deeply disturbing. There’s my fat foot! Oh, my God.

Dr. Weinstock:

Well, didn’t you think you had it? Yes, we’ve talked about it before.

Shivan Sarna:

I know, but I didn’t know about that. I’m a little bit…

Dr. Weinstock:

Well, don’t be embarrassed that there’s a little fat on the back of your heel.

Shivan Sarna:

There’s going to be fat on my body. I don’t mind it being right there.

Dr. Weinstock:

Right. But that’s one of the symptoms. So if you look at the Ehlers-Danlos support group, their website, they actually have a list of the things that you can check for yourself.

Shivan Sarna:

I never heard of that one, okay.

Dr. Weinstock:

So, Ehlers-Danlos syndrome is associated to POTS. Thirty percent of patients with POTS have EDS. Thirty percent of mast cell patients have EDS.

Shivan Sarna:

Wow!

Dr. Weinstock:

My feeling, one theory—I don’t want to peg myself as having just one theory. But one theory is that you do joint damage. You have joint damage. And that’s one of the triggers to getting mast cells to come out.

So if you’re born with EDS because it can be genetic with over-distension and lengthening of the ligaments and the connective tissue, that recurrent trauma brings out the mast cells. And then you’ll mutate your mast cells in

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the bone marrow just because we’re living in a terrible environment perhaps with radiation and who knows what. [50:11] Dr. Weinstock:

And then, you’ve got MCAS. Alternatively, you got MCAS as a child, and you get developmental and aberrant growth because of mast cells.

And that’s one of Dr. Afrin’s theories, that perhaps that’s leading to lengthening of your ligaments. And so a lot of people get dislocations who have EDS. They can dislocate their shoulder. And they can do all weird things. But they can also play sports. And they easily get dislocations.

That’s part and parcel of it.

So tendon injuries and so forth are important.

Shivan Sarna:

And lack of stability in the body?

Dr. Weinstock:

Lack of stability. And EDS also puts you at risk for complex regional pain syndrome. It used to be reflex sympathetic dystrophy. But this is a chronic pain syndrome that occurs usually after breaking a bone. And that creates an inflammatory response and chronic pain that could be migratory and could be associated with various autonomic dysfunction. That’s probably a form of mast cell activation syndrome.

Shivan Sarna:

Wow! Okay. So I probably have it. I have some form of EDS. Can acupuncture help this? It seems to me when I get acupuncture, things calm down for me, and I get into my parasympathetic nervous system and the

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inflammation calms down. I don’t know if you’ve ever delved into that at all.

Dr. Weinstock:

I would say I believe it. Remember, if there’s autonomic dysfunction because of mast cells, it’s stimulating the sympathetics. So if you can do something to improve your parasympathetic balance, and become less sympathetic— And that’s what a lot of the naturopaths talked about. I thought it was kind of a weird thing. But now I really understand it.

And so, if you could do that and create more parasympathetic rest, relaxation and digestion rather than fight-or-flight, well it’s going to work better for your body.

Shivan Sarna:

You can’t lose. You can’t lose in general.

Dr. Weinstock:

Right! That’s why we’re talking about stress, yoga, relaxation therapy.

We’re talking about acupuncture and ozone. Who knows?!

Shivan Sarna:

Foot reflexology helps me.

Dr. Weinstock:

Right! Absolutely.

Shivan Sarna:

Lots and lots of hope. Lots and lots of answers I think. And lots and lots of things to think about. But you’ve given us amazing resources. We’re going to be able to take action based on those resources.

Thank you so much—not just for this interview and all the work you’ve done with us at SIBO SOS™, but also not giving up and not resting on

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your laurels and being a persistent, bright, committed—I could go on and on—searcher and explorer. It means so much to so many of us. I really appreciate it. Thank you so much.

Dr. Weinstock:

My pleasure.

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