79. Gastrointestinal Problems in Hypermobile EDS: Learning to Treat and Spot them with Leonard Weinstock, MD

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Linda Bluestein, MD (00:00.654)

Welcome back every Bendy body. This is the Bendy Bodies podcast and I'm your host and founder, Dr. Linda Bluste and the hypermobility MD. This is going to be a great episode. So be sure to stick around until the very end. So you won't miss any of our special hypermobility hacks. As always, this information is for educational purposes only and is not a substitute for personalized medical advice.

Linda Bluestein, MD (00:29.102)

Today, I am so excited to have Dr. Leonard Weinstock with me. Dr. Weinstock is absolutely an amazing gastroenterologist, has published, I think, 150 papers, if I remember correctly. And yeah, and he was our host, he was our guest for episode 34, talking about mast cell and gastrointestinal problems, and that was an extremely popular episode. So I wanted to have him back to talk about some more,

Leonard Weinstock (00:41.169)

Yeah, that close.

Linda Bluestein, MD (00:57.762)

topics that are pertinent to people with EDS and related disorders. So welcome Dr. Weinstock.

Leonard Weinstock (01:03.997)

My pleasure to be back. Yeah, thank you, Linda. Yeah.

Linda Bluestein, MD (01:07.346)

Of course, of course, I'm just thrilled to get to chat with you. We've obviously crossed paths in so many different places. And I just love it when the audience, the Bendy Bodies podcast audience gets to hear from people like you because they learn so much. So can you start out by just giving us a little bit of a brief bio for those who either haven't listened to episode 34, or maybe it's not fresh in their minds?

Leonard Weinstock (01:31.333)

Okay, well, I've been in practice since 1985 and took my training in Rochester, New York for eight years, and then came to Washington University for my GI fellowship, and then went into practice with a very busy private practitioner. We did a lot of teaching and that was exciting and fun.

And then the thing that I really enjoyed a lot was doing clinical research. My partner had a very open, curious mind, and we always had these interesting cases, which either turned into case reports or case series or actual studies. And then I've been involved in my own studies, investigator.

initiated studies on cefixime for a variety of things, including restless leg syndrome, rosacea, and interstitial cystitis. I'm very interested in the extra intestinal manifestations of GI diseases and starting off with the way that small intestinal bacterial overgrowth hits the body, hits the inflammatory pathways, which go systemic.

And so I've written papers on this and other things. And then started in 2016, I became MCAS aware, POTS aware, and that changed my whole practice and starting off with a paper in 2018 where a patient had severe MCAS and POTS and got better with a unique set of armamentarium treatment.

activity directed at the autoimmune phenomenon in pods, the pain problems associated with MCAS using naltrexone and treating underlying small intestinal bacterial overgrowth. So, you know, it's, I still continue with active colonoscopy screening for cancer.

Leonard Weinstock (03:45.125)

and it's allowed to put all that together in one practice, but I'm surviving.

Linda Bluestein, MD (03:52.579)

And your patients are so lucky to have you because I think we would all love to have a gastroenterologist who looks at these extra, you know, outside of the gastrointestinal tract these connections and things. So I'm so grateful to you for all the incredible research that you're doing and all the publications because anyone who's published knows how.

painful that can sometimes be and the amount of work that goes into it. And so I really appreciate you publishing as much as you have. So can you start out by telling us what, and I don't know if you said it so eloquently, was it, did you say extra gastrointestinal

Leonard Weinstock (04:23.817)

Thank you.

Leonard Weinstock (04:36.905)

Extra intestinal, so outside the gut. Yeah, so like for instance, a lot of patients with Crohn's disease or irritable bowel, which ultimately gets diagnosed as small intestinal bacterial overgrowth, have restless leg syndrome. That's a fascinating condition. There's primary, there's familial, and then there's secondary restless leg syndrome. And over 50 different diseases and conditions.

Linda Bluestein, MD (04:52.418)

Mmm.

Leonard Weinstock (05:05.129)

have been associated with restless legs syndrome. And for something like that to produce the same degree of symptoms, you have to look for commonalities. And one thing that we found, Dr. Arthur Walters and I found, was that most of these things tied together with inflammation. Certainly the watchword of the last decade is inflammation because we know that

Linda Bluestein, MD (05:28.771)

Mm.

Linda Bluestein, MD (05:33.976)

Mm-hmm.

Leonard Weinstock (05:35.317)

You know, it's the modus operandi for so many syndromes and disorders. And so that was, you know, an exciting, uh, review of the literature and theory in a 2012 paper looking at secondary restless leg syndrome, how it manifests, you know, what kind of diseases and conditions manifested in the same set of symptoms and that's in part why it's called a syndrome.

but we're fascinated, I'm fascinated by syndromes in general.

Linda Bluestein, MD (06:11.17)

Mm-hmm. Yeah, they are really, really fascinating. And so many of our patients, I think, present with an unusual or what a lot of us used to think were unusual. Those of us that, like you said, if I became MCAS aware in 2017, but really more aware in 2019 or so, and really started to more by practice directed towards MCAS type therapies. But.

those that have not necessarily made that transition yet, I feel like a person comes in and they might have symptoms in various different bodily systems, right? And so people often are not validated by their practitioner because they're the physician or whoever they're seeing thinks, oh, these things can't possibly be connected. So what would you say to those types of physicians that have never thought of these kinds of things as being connected before?

Leonard Weinstock (07:08.701)

Well, you have to believe in the patient that they're not making things up. I mean, it just seems sometimes, you know, when you sit down with the patients and they check off all the symptoms, is it possible that they could have all these conditions? Well, when you really get into MCAS and you accept it, you understand it. The answer is yes. You just say, OK, that's MCAS. Yeah, that's MCAS. Yeah, that's MCAS. I mean.

Linda Bluestein, MD (07:11.736)

Mm-hmm.

Leonard Weinstock (07:38.961)

You know, and the problem with physicians are several different things. Number one, they don't have a lot of time. And so anything out of their wheelhouse, they want to refer away or disregard. It's just easier that way. If you don't know it, if you don't study it, you know, then, you know, it's easy to disregard, dispense with the patient, dispense with the validation. And then the problem with syndrome. I mean,

It actually is, you know, defined medically as a unique set of symptoms with or without a known cause. And the problem is, I mean, there's plenty of syndromes that actually have known causes and biomarkers like blood tests or manometry or urine tests that's abnormal. And

And yet the word syndrome simply drives away many physicians from thinking, uh, sensibly, if you will, um, and really, um, like for instance, mast cell activation syndrome, yeah, we have, um, blood and urine tests that can validate the patient as having a disease, if you will, uh, because that's what it is. I, frankly, no, there is.

a condition called Mast Cell Activation Disease, which the way it's defined is it's a category of illnesses that include systemic mastocytosis, which is a malignant disease of the mast cells, mast cell leukemia, which is extremely rare disease where it pops up in the blood and you can see mast cells in the blood, which in general you can't.

and mast cell activation syndrome. So that's the umbrella term for those three conditions, but mast cell activation disease, you know, it'd be nice if we could just change MCAS into MCAD of its own right, perhaps MCAD1 and MCAD2 could be systemic mastocytosis and MCAD3 could be mast cell leukemia, but.

Linda Bluestein, MD (09:51.564)

Mm. Mm-hmm.

Leonard Weinstock (10:01.149)

You know, even in small intestinal bacterial overgrowth, irritable bowel syndrome, what I like to call somebody who's got a positive antibody test that forms after an infection, autoimmune irritable bowel syndrome. Or more to the point, irritable, more to the point, small intestinal bacterial overgrowth associated with autoimmune phenomenon. So, you know, if we could just.

zero down to what are biomarkers and accept that syndrome as a disease, I think people can, you know, understand doctors and patients can understand it better that we're dealing with the real deal.

Linda Bluestein, MD (10:46.686)

Yeah, and actually, as you were saying that I was thinking about the Ehlers-Danlos syndromes of which there is a biomarker for all but one type. And so it's interesting that we still call it Ehlers-Danlos syndrome, like the vascular type for example, it's still vascular Ehlers-Danlos syndrome when it could be vascular Ehlers-Danlos disease because we do have a biomarker for that. So that is really interesting.

Leonard Weinstock (11:08.305)

Right. But your biomarker is your physical exam. I mean, if you have the physical findings, the Beigh ton scale, I mean, why is, why is it still called a syndrome? I don't know. I don't get it, frankly.

Linda Bluestein, MD (11:12.28)

Mm-hmm.

Linda Bluestein, MD (11:25.094)

Yeah, there's a lot of things I don't get, that's for sure. Okay, so I wanted to talk specifically about abdominal pain because I feel like this is such a common thing that I see in my patients. I definitely didn't appreciate until I started seeing more patients how many people have some type of abdominal or gastrointestinal type symptoms. So how commonly do you see joint hypermobility in the people that you are evaluating with abdominal pain?

Leonard Weinstock (11:52.865)

Oh, quite often. First of all, there was an article at a Mayo clinic looking at, let's say a 20 year period of their hypermobile EDS patients and 67% had significant gastrointestinal disorders. So just from that point, let's go back. Mast cell activation syndrome, MCAS, I think the majority of patients have GI symptoms. Now, certainly.

Of course, every patient I see has GI symptoms because I'm a gastroenterologist. They're coming to me for a second or third or fourth opinion regarding their unremitting, refractory, um, irritable bowel, chronic nausea, um, syndrome or, or chronic

Leonard Weinstock (12:50.949)

syndrome of some type or another and it often once you know that once they've had their two or three colonoscopies two endoscopies yeah you've ruled out Crohn's disease and celiac yeah something's got to be there and often I diagnose MCAS and so it's extremely common as far as mast cells there's just a tremendous number of mast cells in the gut and that reservoir is

what reacts to food or food allergens most often and can cause pain locally. Years ago, there was a study of just IBS patients. This was before, a year before, in fact, MCAS was discovered by Dr. Molderings But in 2006, Barbara, and 2004 as well as they studied

irritable bowel syndrome patients and they looked for mast cells and the closer the mast cells to the nerves and there was more pain and they also saw tryptase and histamine in the lining of the intestine, whether it be irritable bowel with constipation or diarrhea. And this was one of the first times that we really have a.

biomarker or actually a study, if you will, of a mechanism of action that explains some cases of Irritable Bowel Syndrome.

Linda Bluestein, MD (14:30.68)

So are you saying that in some patients the mast cell and the nerve endings were closer together than in other patients?

Leonard Weinstock (14:37.521)

Yeah, so controls, you know, compared to controls, there are no mast cells next to sensory neurons, whereas in IBS patients they were closer, and the closer they were to the nerves, the more pain, which kind of makes sense.

Linda Bluestein, MD (14:57.686)

Mm-hmm. And you've mentioned some of the co-occurring GI symptoms that you see, but can you maybe fill us in on if there's any other ones that you have? Mm-hmm.

Leonard Weinstock (15:05.845)

Oh, bloating is a big one. I didn't mention bloating. I didn't mention irritable bowel type symptoms, but that means abdominal pain, diarrhea, constipation. Both are just one chronic nausea or intermittent nausea is a big one. Difficulty swallowing.

Many of my patients have problems, especially in the upper esophagus with both liquids and solids and I've done esophageal manometry checking the pressures of the contraction waves and can see abnormalities that are, you know.

common, but nobody puts it together with an underlying syndrome such as MCAS. And the other aspect of MCAS is bloating. And I did a study along with others looking at my patients with bloating. How many patients had small intestinal bacterial overgrowth? How many had...

dysbiosis as suggested by methane excretion and how many had a normal test. And so basically 30% of my MCAS patients with GI symptoms, 87% had bloating, had abnormal hydrogen levels.

something we could treat, reduce the amount of hydrogen and improve, and also reduce the inflammation that activates the mast cells. Ten percent had methane, and then the rest actually were normal, but they still had severe bloating. And I have seen x-rays on patients with...

Leonard Weinstock (17:01.917)

acute attacks of MCAS where there's distension and a lot of times there's just a lot of fluid in the middle of the intestines that just swell things up and excrete fluids into the lining and through into the lumen which is the channel or the bowel itself and that's very painful as it stretches but also it takes up room in the gut and so this spontaneous

Bloating is a very common thing in MCAS patients.

Linda Bluestein, MD (17:37.074)

Is that something that you can actually see on CT or ultrasound or?

Leonard Weinstock (17:41.233)

Yeah, yeah, I am preparing a manuscript now where a patient had multiple attacks. He was undiagnosed of MCAS until I saw him, but his job was to inspect homes. And many of the homes were moldy. And so he'd go into the home and then he'd rush out onto the front lawn and have cramping, abdominal pain, vomiting, sometimes diarrhea.

mess, of course, a major problem. And then some of the attacks were so severe that he took, he had four hospitalizations and on each one there was distension with mainly fluid, but some air. And one of them, at his third admission, they took him to surgery to look for an obstruction and they couldn't find anything. No adhesions, nothing.

Linda Bluestein, MD (18:20.677)

Oh.

Leonard Weinstock (18:41.405)

And so this is the extreme example of a patient who subsequently was diagnosed with MCAS. I told him to take MCAS therapy, which helped him and he wore a mask when he went into homes, but it really was getting out of the environment completely and changing jobs that took away the mycotoxin trigger that led to attacks of MCAS.

Linda Bluestein, MD (19:11.446)

Wow, that's an incredible case. I'm so glad you're writing that up because that's really interesting. And I wanna ask, but also I know the answer, but I want other people to hear the answer. Is it always that obvious?

Leonard Weinstock (19:25.785)

Well, it wasn't obvious to anybody else but me. So, I mean, you have to have a history. It's always history, history in medicine to really know. I mean, you have to look for triggers, whether it be tick-borne illnesses, mycotoxins, which keep things activated. On a personal note, I have

Linda Bluestein, MD (19:28.083)

Yeah, that's true. That's true.

Leonard Weinstock (19:52.709)

IBS with a positive anti-vinculin antibody from food poisoning 40 years ago and some mild irritable bowel, but my problem was really rosacea, which is an ocular rosacea, which I published to be associated with SIBO. And I got a lot better in my eyes and skin and with antibiotic therapy.

using rifaximin but I was living in a moldy home and ultimately the asthma got worse and some brain fog, but I moved to an apartment and my eyes got completely better. I went back to my ophthalmologist and every time I had gone there were abnormalities of my meibomian glands, the things that make tears.

And then they basically reversed completely. So getting away from mold really made a big difference as it's an inflammatory condition. So that's important. Chemical exposures. I think that there was one patient that I...

didn't really investigate his occupation well enough, kind of had a feeling that it might've been related, but he was a paint salesman. And when he would go on trips, I thought, well, maybe he was flying. Maybe it was the flight, the altitude, the atmospheric pressure, the stress of the, but what it was ultimately, and I didn't really realize that,

Linda Bluestein, MD (21:19.906)

Mmm.

Leonard Weinstock (21:40.009)

That's what they did at the meetings, but they would pop the can of paint and then he would smell that and that would activate his MCAS and then he would have severe abdominal pain, diarrhea and nausea and vomiting requiring ER visits for a while. I used our intravenous protocol which would help get him over this and I even used chemo.

agent because nothing else was working well. So, Imatinib was used with great success, but it was him telling me that he retired and he was feeling terrific and he thought it was due to the paint. And it made sense that chemical exposure, the VOC, the volatile organic chemicals were activating him. So you got to think about.

that the chemicals you got to think about heavy metals. Lots of patients who are older have the amalgam in their teeth or they have an implant or they have mesh and that can activate it as well.

Linda Bluestein, MD (22:46.906)

Mm.

Linda Bluestein, MD (22:54.39)

That's really interesting and I apologize for my use of the word obvious because I'm sure it was not obvious for quite some time. Once you identify your patients, once you identify a pattern like that, is it usually pretty straightforward? I guess it would maybe be a better word.

Leonard Weinstock (23:12.693)

Well, the straightforward ones are some of the exposures. And I do now ask those four basic questions, tick infections, mold, mycotoxins, chemical and amalgam heavy metal. So I always ask those now. That's just part of my questionnaire. But

Linda Bluestein, MD (23:19.563)

Hmm.

Leonard Weinstock (23:42.201)

You got to look heavy, but the difficult ones are the tick-borne and also the mycotoxin. You know, is it enough that you've lived in a home that had mold? Is that really are you the one who has the genetic marker that allows you to get ill with mycotoxins? Maybe it's not enough that you've lived in a home when you were a kid. But.

It's possible that those toxic changes and also I meant to say infections in addition to tick-borne such as viral infections like we're having with COVID. So that's another big one that is in addition to common triggers that are really important to ask about.

Linda Bluestein, MD (24:35.434)

And you mentioned food allergy, I think a little bit ago. I know sometimes testing for those can be very challenging. Do you have particular ways that you test for food allergy?

Leonard Weinstock (24:46.773)

Well, I first do the exclusion diet of gluten-free, dairy-free, including dairy protein and yeast-free and low histamine diet. And that takes away a lot of things, of course, are really difficult to follow it. But

Linda Bluestein, MD (24:49.537)

Mmm.

Leonard Weinstock (25:09.229)

can really make a big difference and you can re-challenge patients. I encourage patients to challenge themselves with one thing at a time, but food allergy per se, the problem testing for that is if you don't have hives, then skin testing is not going to be effective or Radioallergosorbent (RAST)  blood testing is not going to be helpful. If you send patients to an allergist saying who don't have those, you

obvious allergic changes, it's going to be very difficult for them to come up with a testing program. So you know there's an IgG test. Now that might reflect increased intestinal permeability and some of the chemicals or the immune globulins associated with foods.

be helpful but I really don't order those in general.

Linda Bluestein, MD (26:10.006)

I was curious to ask because I think there are some dieticians that do order those pretty frequently. So I've had patients sometimes come to me and list off a whole series of food allergies. And I, you know, depending on the way that the testing was done, I encouraged them to kind of keep an open mind and because isn't it true that you could think that you're allergic to a food, but maybe you're not with those, with those tests.

Leonard Weinstock (26:34.245)

Well, that's right. That's very true. There's another test that I used to do a fair amount, a little expensive, $350 called the leap test, LEAP. And that looks for mediator reactive testing. And, um, you know, about 60% of people found things. Well, many things were found. Basically they put the blood.

blood cells, the white cells, adjacent to the like a hundred different foods and chemicals and they say what you react to, whether it's red, yellow or green in terms of the degree of reactivity. Maybe that's a form of foods getting into the gut lining, activating the mast cells that are there. We don't.

really know because it's supposed to be leukocytes, white blood cells, so it's kind of an odd test. Sometimes it's helpful, yet another way to look for food reactivity.

Linda Bluestein, MD (27:47.959)

Mm-hmm. Okay. And when we talk about extra intestinal causes of gastrointestinal symptoms, I know one of the other things that maybe one might want to touch on is compression syndromes. And people with EDS especially are at risk for that. So could you talk a little bit about that?

Leonard Weinstock (28:06.149)

Right. So there's a big one, which is median arcuate ligament syndrome, MALS. So that presentation is upper abdominal pain, usually associated with eating, virtually always, in the upper abdomen and sometimes right upper abdomen. It can have nausea with it.

tends to be in Ehlers Danlos patients almost completely. It can be associated with patients who have MCAS and POTS as well. So you could have the whole triad there because, and somehow it's, it can really be related because MCAS and POTS ultimately can actually get somewhat better when you relieve

release the ligament that's pushing on the nerve plexus but there's also a requirement that the surgeon denervate or disrupt the nerve complex in that area to get relief of pain. And so that's one of the reasons why there's a test that the surgeon wants to see to be abnormal, namely an endoscopic

ultrasound guided denervation or numbing with, if you will, with a steroid and lidocaine mixture to see if that takes away the pain for one or two days. And if it does, then surgery can be beneficial. All too often though, the vascular surgeons just want to get in there, release that

on the celiac artery, but it's not really the compression of the artery per se, but it's the compression of the nerves that travel along with the artery and are embedded in that part of the body. So that's one of the most important things to recognize. Sometimes one would find a arterial

Leonard Weinstock (30:27.197)

whoosh sound when you're listening to the abdomen. And that but that's only about 40 percent diagnosis generally requires testing with angiogram or an ultrasound looking to see if there's decreased flow with deep inspiration or expiration.

Leonard Weinstock (30:50.481)

The surgery again I've mentioned is often successful but unfortunately not always. So it can be very frustrating. The other vascular phenomenon that is common is nutcrackers where the renal vein is compressed and that can cause blood in the urine and pain.

And then there's another one, pelvic compression syndrome, where the left iliac vein is compressed. And that creates pelvic pain and varicose veins in the upper thigh and on the vulva. And that has to be treated with a stent.

and to stent open the renal vein, the iliac vein, pardon me, and then they also can embolize the varices. So that's done by interventional radiology.

Leonard Weinstock (32:03.973)

Those are the three main ones for compression. And then we also have Ehlers Danlos can do funny things to the small intestine colon by having such stretchy

Leonard Weinstock (32:26.222)

It had a pelvic and peritoneal attachments. So we have our guts hanging out, you know, in our peritoneum, the cavity in the abdominal cavity, but they're not hanging out, running around loose. They're held in place to a certain degree by these connective tissues, which are also where the blood vessels and nerves travel.

And just like the joints are hypermobile because of extended ligaments and tendons, the guts are often a problem in EDS because these attachments are long. So the small intestine can be loopy and droopy.

Visceroptosis is the word for the small intestine drooping down into the pelvis and that creates kind of a sump sewer if you will where bacteria can reside and you can get small intestinal bacterial overgrowth and then the one can get dire constipation if the colon droops down

because then the colon goes up and then down like this, and there's a lot to travel, and peristalsis may not be normal or not be normal enough to make for a good traveling from point A to point B and having decent bowel movements.

Linda Bluestein, MD (34:03.454)

And are there other causes of gastroparesis or slow movement through the upper gastrointestinal tract as well?

Leonard Weinstock (34:10.573)

So we see that in MCAS, it could be due to the chemicals activating the sympathetic nervous sympathetic nervous system. So we don't have good peristalsis. POTS itself is a hypersympathetic state and

You can either have slow movement. So studies have been done where they either show, you know, slow gastric emptying, but they're also in the same group of patients where a number who had fast emptying. So it doesn't always make sense.

Linda Bluestein, MD (34:58.574)

Okay, and when you're working up these patients, what are the most common tools that you're using to work them up?

Leonard Weinstock (35:05.541)

Okay, well first of all the physical exam, checking for the orthostatic pulse changes of POTS, the bite ton scale, looking at the heels, looking for the fat extrusions in the heel, and the stretchy skin and soft nature of the skin. Then for

MCAS on physical exam looking for hemangiomas these angiomas cherry red angiomas but they're also called hemangiomas are actually fairly common with aging but when you see them you ask the patient do these ever get enlarged or multiply itchy or burning

And that's one of the skin signs, of course, dermatographism. And you can even ask people when they scratch themselves that they see lines, but you can just scratch somebody in the beginning of the exam to see if it comes up, suggesting that there may be increased mast cells in the skin. I also see.

Linda Bluestein, MD (36:15.831)

Mm-hmm.

Leonard Weinstock (36:18.601)

telangiectasia, little blood veins. Theoretically, this is from vascular growth chemicals produced by mast cells. And then, you know, you're examining for abdominal pain, listening for bruits. You're looking for edema. You're looking for red eyes of conjunctivitis.

And then there's testing for the two plasma tests histamine and prostaglandin D2. You're testing for chromogranin A which appears not unfrequently but can be caused by proton pump inhibitors and chronic renal insufficiency and congestive heart failure. Usually you have a history for that or labs telling you.

And then tryptase, one generally gets a tryptase, not because in MCAS one expects it to be elevated. But if it is elevated, you want to make sure it's not over 20 because if it is, then you want to look for the malignant form of mast cell disease. We also have 6% of the population having elevated.

tryptase levels from this hereditary gene duplication called HAT hyper alpha tryptasemia which has a tryptase level that's elevated from baseline but by itself that is inert chemical and doesn't cause symptoms.

but when you have patients who have HAT, they can have MCAS as well. And then there are three urine tests that are commonly done. The leukotriene E4, the alpha, the 2,3-dinner alpha prostaglandin F2, and the N-methyl histamine. So that's what our group does in terms of testing.

Leonard Weinstock (38:43.785)

Often the allergist will test tryptase by itself and tell patient the tryptase levels not high, therefore you cannot have MCAS. But they're really not paying attention to their own consensus group where their criteria says abnormal tryptase or tryptase that goes up by 20% plus two during an attack or lesser specific

chemicals such as N-methyl histamine and prostaglandin D2 or heparin. So I mean the problem is many of the allergists look at just the first part of their criteria for labs. They also think that most of the patients with MCAS have terrible thing called anaphylaxis which is potentially

put people at risk for death, but in fact, you know, is relatively rare in my patients with MCAS.

Linda Bluestein, MD (39:49.722)

And how often do you see positive findings in those labs that you do?

Leonard Weinstock (39:53.725)

About 70% of the time.

And then the key thing is though, is you have this set symptoms, either classic mast cell symptoms and two or more systems. And for some studies that we've done, we've actually increased that number to five systems out of 11 that are characteristic for MCAS. And then with mast cell directed therapy, patients get better.

that fills a major and a minor criteria leading towards a diagnosis of MCAS.

Linda Bluestein, MD (40:35.282)

Okay, and are you sending your samples to any particular lab or?

Leonard Weinstock (40:40.945)

Well, generally to Mayo, but we have, and the key thing is how you collect the specimens. The urine has to be collected cold and then frozen and shipped. The two plasma tests, the histamine and prostaglandin D2 need to be spun cold, either in a cold centrifuge and a number of hospitals have that.

I have a regular centrifuge, but my tech keeps the jackets that hold the test tubes in place in the freezer so they spin cold that way. And with that, about 37% of patients have a positive plasma test. And then about 15 to 20% have positive.

Linda Bluestein, MD (41:17.635)

Hmm.

Leonard Weinstock (41:35.937)

chromogranites and much less have tryptase level.

Linda Bluestein, MD (41:42.006)

So are they getting the labs drawn in your office then? Okay, okay, great.

Leonard Weinstock (41:44.573)

Yeah, they are. Yeah.

Linda Bluestein, MD (41:49.29)

So what are some things that people can do if they are not able to come see you and they're not able to find a gastroenterologist who is taking this kind of approach, which honestly, I don't know anyone else who does. Do you have any suggestions for how they can, yeah.

Leonard Weinstock (42:07.621)

Yeah, I do. I think that the integrative functional doctors have jumped on this bandwagon, and so they're a route. And you could look up integrative doctors in your area, and some of them also do.

Leonard Weinstock (42:28.585)

counseling in different states. So telemedicine can work for some of these doctors. I think even naturopathic doctors can play a good role. Now, just for my protocol for step one therapy, the basic first step, all things except for one are over the counter.

H1 blockers such as loratadine, xyzal, allegra, pepcid, famotidine, which is an H2 blocker, quercetin, which is a flavonoid, which stabilizes the mast cell, and vitamin C and D, which also stabilize the mast cell.

And then what you can do furthermore is if you can't find a local physician who's, let's say, a functional doctor that's familiar with low dose naltrexone, which I will pretty much always prescribe, assuming the patient's not on narcotics. It's an anti-narcotic that basically tricks the body into making endorphins, which suppresses T and B cells.

but it also because it suppresses a toll receptor and suppresses cytokine production, decreases the activation of the mast cell. So I like that. And there's help to get a physician to prescribe that because they have a multi...

state licenses or there's actually very possibly a doctor in your own hometown or adjacent town or state that will prescribe and you can find that in two resources ldnscience.org and ldnresearchtrust.org. So

Leonard Weinstock (44:35.477)

In a little study I did of my first 116 patients with MCAS who took Naltrexone, 60% had positive effects, 20% that didn't help, and 20% had side effects that made them want to stop. The good thing about Naltrexone is that if you have a side effect, you stop, which you can do immediately, it goes away. So things like...

you know, insomnia, jittery feeling or vivid dreams are three of the most common things that patients have. Sometimes you don't get that, especially if you go up slowly on the dose. And so I think it's always worth a try because in MCAS, you know, just one drug trying to treat it, it never works because the...

mast cell has 200 receptors and half of them are activating and therefore trying one drug with one method of toning down the mast cell is not going to do it. It's always a cocktail.

Linda Bluestein, MD (45:48.01)

Yeah, and those are some of my absolute favorite treatments as well, especially LDN, which I take personally. And I think it probably has been one of, if not the most helpful thing for me and improving my levels of pain and my quality of life and physical functioning. So, yeah, and I find it very effective in my patients, especially I'm sure you do the same thing. If there's a side effect, sometimes if you change up the formulation and, you know, get

Leonard Weinstock (46:04.309)

great.

Linda Bluestein, MD (46:16.214)

give her to some excipients or something, or just use a different filler or capsule or whatever, that, or go up slower on the dose. Yeah, yeah, yeah. So that's a perfect lead in to the project that we're working on together. I would love for you to share with the Bendy Bodies podcast listeners what it is that we're up to and how they might be able to help.

Leonard Weinstock (46:22.713)

down or decrease the dose sometimes could be just enough. Yeah.

Leonard Weinstock (46:42.949)

We are up to creating a documentary to bring to light the evil triad, as I like to say, EDS, POTS, and MCAS. And what we're going to do is have high quality filming, patient stories, doctors' opinions, the way we've stumbled onto this, how it's affected our practices.

and how we feel like we've been able to help patients and how important it is that this is recognized because the problem is that physicians who get out of med school often don't pick up many, many new things. They are set with a set of tools, if you will, and basic

text learning. But, you know, the new things that come out, you see periodically and many times it's because a drug rep comes in and says, hey, we've got this new drug for irritable bowel syndrome. You know, let me show you the studies. And if it wasn't for that, you might not have heard about it. Or there's some big companies like Kaiser that don't let you prescribe

medicines other than generic. So you're never going to be able to prescribe something new that's out there for a new disease or a new way to treat the disease. So what we want to do is improve awareness and give hope to patients who have it. Again, like you said,

You've got patients out there who can't find a doctor. We hope that this will start changing minds, perhaps with the other aspect to our movie, which is a educational library for doctors and or patients to tune into and listen to lectures will be helpful. And then the ultimate goal is that.

Leonard Weinstock (49:09.813)

will be able to get the program into the first couple of years of medical school where the patient, where the doctors have an open mind. Once you get out into a busy rotation and you're spitting things out in a very mandatory way, then a cookie cut away is a better way of saying it, then your mind gets closed.

is easier to work that way. So what are we doing? We're going to post a link. It's mcasfund.com. And hope that we can get contributions or donations no matter how small would be helpful and appreciated.

and also to make you and others in your family aware that this is coming down the pike and something that validates what you are experiencing.

Linda Bluestein, MD (50:19.866)

And I do want to point out that you and me and there's Dr. Dempsey and Dr. Kinsella and Jill Brook are the team that's working on this. All of us are volunteering our time. And so I just want to make sure that people know that, you know, none of us are taking a salary or anything like that for doing this. Yeah.

Leonard Weinstock (50:28.297)

You're all broke. Yeah.

Leonard Weinstock (50:39.641)

Right, right. Yeah, I've donated. Others are donating themselves as well. Yeah. So we're all donating money and time. And I think, you know, when you start treating MCAS, POTS and EDS, if you don't have compassion, if it doesn't strike compassion and you don't buy it, then

Linda Bluestein, MD (50:47.127)

Yeah.

Leonard Weinstock (51:04.933)

It's a tragedy and it's a tragedy for your patients and in a way for you as a doctor, just you're just not getting it. And what we want to do is for doctors to get it and help their patients.

Linda Bluestein, MD (51:21.61)

Yeah, because it's really ironic. A lot of people call these conditions invisible, but they're really not. You just need to have your eyes opened. And once your eyes are opened, then you can't miss it. So, yeah. Yeah.

Leonard Weinstock (51:30.793)

Right. It's invisible to the doctor, unfortunately. But I mean, you know, what's interesting sometimes is, you know, you talk to patients about, you know, are you double-jointed? That's the fastest way I get to, you know, are you hypermobile? And all of them know that they've been able to do the party tricks. But.

they don't necessarily realize it comes with consequences. And so the abdominal pain that they're having or the pelvic pain that they're having is a real issue.

Linda Bluestein, MD (51:59.051)

Right.

Linda Bluestein, MD (52:08.458)

Yeah, no, I definitely see that. And I tell people all the time, stop the party tricks long before they start to hurt because by the time they start to hurt, it's too late. And another point I wanna make with these syndromes and being invisible is that you don't necessarily have to be an expert for the physicians listening to this. You don't have to be an expert, but you have to have an open mind and an open heart and want to help.

Leonard Weinstock (52:08.961)

Yeah.

Linda Bluestein, MD (52:33.674)

because I think it can be intimidating, you know, listening to someone like you who has such deep knowledge of these conditions. But I think most people, most patients, they want to be seen and they want to be heard and they want to feel like you care.

And that's the first step towards healing. So I think if we could do that for them, and we're not expected to have all the answers or all the answers right away anyway, these people can then start to get more information and learn how to make the referrals or who to refer to and that kind of thing. So.

Leonard Weinstock (52:50.833)

Yeah.

Leonard Weinstock (53:05.761)

Yeah, it's funny when I first learned about this, I did a grand rounds and at my hospital and then later at the university for GI rounds and I thought, well, this is amazing, everybody should learn about it, know about it and what it's done is now I'm basically getting all the referrals for it. So it didn't help me in my.

Linda Bluestein, MD (53:29.024)

Ah!

Leonard Weinstock (53:33.725)

effort to spread the word and have people take up the sword to help.

Linda Bluestein, MD (53:41.098)

Yeah, we need more people to I'm going to mark that as a quote that we're going to want to take. We need more people to take up the sword. Yeah, definitely. So okay, did I miss any questions? Or did you have any final thoughts? Anything that you wish I had asked?

Leonard Weinstock (53:48.373)

Yeah.

Leonard Weinstock (53:58.944)

No, I think you've got it. I think you've got it all.

Linda Bluestein, MD (54:02.278)

Okay, great. I always like to ask for hypermobility hacks. So if you have any in particular, and it could be an MCAS hack, by the way. So if there's anything there that you would like to share, we would love to hear it.

Leonard Weinstock (54:17.477)

Right. I would definitely keep in mind the vascular and compression syndromes because the Bendy body folks are prone to get it. And it's not quite obvious and it takes diagnostic testing to look. And so you have to know.

to be able to talk to the radiologist to tell them exactly what you're looking for. And, um, you know, you need to ask your doctor, you know, uh, about what's going on. So if you're an EDS patient and you have blood in the urine, you got to think about, uh, the compression of the renal vein, um, and, um, uh, nutcracker syndrome, which causes, which can cause abdominal pain.

Linda Bluestein, MD (55:10.318)

Do you know what the... Right, do you happen to know the success rate for the surgeries for any of those at all, or I'm sure it varies depending on...

Leonard Weinstock (55:17.617)

Well, I would say in the 80 to 90 percent range. Yeah.

Linda Bluestein, MD (55:22.938)

Oh, so high. Okay. Really high. Okay. And where can people find you online?

Leonard Weinstock (55:29.445)

Well, my website has a lot of information on MCAS. It's going through a new build up, changing from one company to another. So it's not quite where it was, but it will get back to it. But I do have literature and lectures on MCAS and educational information, including my approach to MCAS, which is a 15 page document with specific

treatments that can help specific symptoms at gidoctor.net. I am limiting my patients to Missouri because that's the only place I have a license so I don't practice out of state or do telemedicine. And I think those, oh, I do have things on the internet YouTube as well.

Linda Bluestein, MD (56:26.686)

Okay. Okay, great. And we'll make sure to put links to those things also in the show notes so people can access that information. So well, you have been listening to the Bendy Bodies with Hypermobility MD podcast today and our guest has been Dr. Leonard Weinstock. And Dr. Weinstock, it has been such a pleasure to chat with you today. I am just so impressed with your incredible depth of knowledge, generosity with information. And it's just always a pleasure to get to chat with you.