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In this episode of the Bendy Bodies Podcast, Dr. Linda Bluestein chats with functional medicine expert Dr. Jill Carnahan about tackling complex conditions like Mast Cell Activation Syndrome (MCAS), Ehlers-Danlos Syndrome (EDS), and POTS. A Breast Cancer and Crohn's disease survivor, Dr. Carnahan shares her unique approach to identifying root causes of chronic illness using functional medicine principles. They explore the triad of MCAS, EDS, and dysautonomia, and discuss tools like the limbic system, toxin reduction, and gut healing to improve patient outcomes. This episode is packed with practical insights for navigating chronic illness and optimizing your health.
In this episode of the Bendy Bodies Podcast, Dr. Linda Bluestein chats with functional medicine expert Dr. Jill Carnahan about tackling complex conditions like Mast Cell Activation Syndrome (MCAS), Ehlers-Danlos Syndrome (EDS), and POTS. A Breast Cancer and Crohn's disease survivor, Dr. Carnahan shares her unique approach to identifying root causes of chronic illness using functional medicine principles. They explore the triad of MCAS, EDS, and dysautonomia, and discuss tools like the limbic system, toxin reduction, and gut healing to improve patient outcomes. This episode is packed with practical insights for navigating chronic illness and optimizing your health.
Takeaways:
Mast Cells as the Root Driver: Dr. Carnahan explains how mast cells play a central role in triggering symptoms in EDS, POTS, and MCAS, often driven by infections, toxins, or trauma.
Functional Medicine Seeks the Root Cause: A functional medicine approach looks beyond symptoms to uncover underlying triggers like mold, Lyme disease, or environmental toxins.
Limbic System Reset is Critical: Addressing the limbic system through the DNRS or The Gupta Program can calm overactive mast cells and reduce overall symptom severity.
Diet Plays a Vital Role: A low-histamine diet can be transformative for people with MCAS, reducing inflammation and improving gut health.
Small Steps Lead to Big Changes: Healing requires incremental improvements, like reducing toxic exposure, supporting adrenal function, and improving sleep and nutrition.
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Dr. Linda Bluestein: [00:00:00] Welcome back every bendy body to the bendy bodies podcast with your host and founder, Dr. Linda Blustein, the hypermobility MD. Today we are going to be chatting with functional medicine expert, Dr. Jill Carnahan. I have found so many functional medicine principles and practices to be helpful in my own healing journey and in that of my patients and my clients.
Addressing root causes and treating the whole person are such core fundamentals that we desperately need in medicine. Dr. Jill Carnahan is duly board certified in family medicine and in integrative holistic medicine. She is the founder and medical director of Flatiron. Functional medicine. As a survivor of breast cancer, Crohn's disease, and toxic mold illness, she brings a unique [00:01:00] perspective to treating patients.
She specializes in searching for the underlying cause of illness through cutting edge lab tests and personalized medicine protocols. Dr. Carnahan is also an executive producer, film writer, and featured in an award winning new documentary about her journey overcoming chronic illness called Dr. Patient, now available streaming online and on Amazon Prime.
As a popular inspirational speaker and prolific writer, she also shares her knowledge of hope And healing live on stage and through newsletters, articles, books, and social media. I am so excited to chat with Dr. Carnahan today. She has so much information about mast cell activation syndrome, some of the common factors that will exacerbate these conditions of the triad.
And she's going to share with us how functional medicine can be so beneficial for treating these conditions. As always, this information is for educational purposes only and is not to substitute for personalized medical advice. Stick around until the [00:02:00] very end so you don't miss any of our special hypermobility hacks.
Here we go!
Alright, I am so excited to chat with Dr. Carnahan today. And you have such an amazing story and we have so much to talk about. So we're going to jump right into it. Um, I know you're a survivor of breast cancer, Crohn's disease, and toxic mold illness. And you've taken those personal experiences and definitely incorporated them into how you approach patient care.
Can you start out by telling us how your own medical problems have shaped your approach? And did you experience gaslighting along the way? Like so many of our patients have.
Dr. Jill Carnahan: What a great question because it's so common, right? And even as physicians, we have that experience. So I grew up on a farm in central Illinois.
I was one of five children. I was the oldest girl and really kind of an idyllic life. My mom and dad have been married over 50 years and, you know, we had our organic vegetable garden growing up and just like, Lots of space to play, but unbeknownst to [00:03:00] me, I think some of that environment was actually creating toxic load that ended up in my diagnosis that you alluded to when I was in the midst of medical training.
So I always know I want to do a healing profession, but then as I was applying to different types of healing programs, I realized that maybe medicine was the best way to really learn our. highly reimbursable system in the US, at least for now. And so I went to allopathic medical school. And in my third year, just after my surgery rotation, we were talking about breast cancer and breast exams.
And I had just turned 25 years old. I did my very first breast exam and I found a lump and I kind of didn't think much of it because of course you're 25, you're thinking you're invincible and you're not thinking about breast cancer. But at the insistence of my physician, I went ahead and got a biopsy.
And it was very shortly after that, I got a call from the oncologist that said, you have aggressive. Breast cancer, which of course changed the trajectory of my life. I'm just 25 years old. And you know, nowadays, sadly, there's a lot more young women being diagnosed. But at that time, I was at Loyola University in Chicago, and I was literally the youngest [00:04:00] one that ever diagnosed at that medical center.
And that was 2001. So that really changed the trajectory in the sense of, I had to do aggressive chemotherapy, three drugs, six cycles, did radiation, multiple surgeries. And then about nine months later, I was considered in remission and You know, when you're faced with that diagnosis, now I'm 20 plus years later, healthy and vibrant, but you don't know if you have six months to live or what's going on.
So I did all of a sudden have to go from, you know, training as a physician to becoming the patient and facing the reality of that. And also really deciding in a complex situation where there was no protocol for a 25 year old with the breast, you know, aggressive breast cancer. What I was going to do was I going to treat it aggressively with all the traditional therapies.
Was I going to do any alternative therapies at the time? And I kind of chose the best of both worlds. I went with real aggressive therapy, um, because they, you know, it was a life threatening diagnosis at that time and it really saved my life. But I think some of the sequelae over the last 20 years that I've dealt with were probably a result of some of that [00:05:00] toxic therapy on my immune system.
And I don't have any regrets. I would have done the same thing, but we always have those choices, right? And I think alluding to your gaslighting. Um, I think I was made to believe that if I didn't do absolutely everything conventionally that I would die. And so I really, you know, felt pressured to do all of the conventional.
The good news is I had always believed in holistic healing and nutrition and lifestyle. So alongside of all the conventional therapy I did, uh, I saw a naturopath, I saw a pastor, I had a great group of friends surrounding me. So I had like spiritual, mental, emotional, I had the lifestyle changes. So I felt like part of my recovery.
was made much easier by the fact that I did have the right nutrients and I did have the right gut support and all of that.
Dr. Linda Bluestein: Oh my gosh. What an incredible journey you've been on. I mean, To, to have that happen at such a young age and just interrupt your medical education and everything was there a point at which you wondered, am I going to go back to school or what, [00:06:00] you know, like you said, you don't know what things are going to look like 20 years later, 10 years later.
Dr. Jill Carnahan: You don't. And certainly it was the shock of my life. Now, looking back, I'm like, Oh, no wonder. Like as a healer, so often we go through our own journeys or that of close family members or friends. And it really changes our trajectory because I think especially in allopathic medicine, we think we should have all the answers.
And we realized not only the uncertainty principle, which is so frequently there, meaning that we think things are black and white as a physician or as a patient, and it's never black and white, right? It's shades of gray. So learning that, wow, There is no one protocol that's the right thing. I had to really make a decision.
And then I think the second thing that was important was experiencing life on the other side as a patient and understanding not only the complexities, but you asked about gaslighting. I have one specific experience because after I finished all my treatment for breast cancer, I was very sick, very malnourished.
My gut was pretty much destroyed from chemo and I went right back into training and um, I, about the next [00:07:00] six months was having cyclical fevers, bleeding, diarrhea, abdominal pain, and I just assumed I chalked it up to the chemotherapy. But at some point it got bad enough that I passed out in my emergency room rotation and, you know, was taken in and turned out I had an abscess that was later diagnosed as Crohn's disease.
So very shortly after my cancer, chemo, all of that, I had the diagnosis of Crohn's disease. And I'll never forget going to the gastroenterologist and I was so sincere. I was like, you know, what do I do? How can I control this? He said, you're going to need drugs. You're going to need immune modulating drugs.
You're probably going to need part of your colon removed over your lifetime. This is incurable. And, um, let's start with steroids and some heavy duty drugs and antibiotics. So it was pretty hopeless, but I remember kind of like, as I left, I said, you know, doc, I want to do my part. What diet should I be on?
What kind of food should I be eating? And he did not even pause. And he said, Jill diet has nothing to do with this. Right. And I remember in this 20 plus years ago, now at least gastrointestinal start thinking the fact that diet does have something to do with it. [00:08:00] And I wasn't asking for a cure with diet.
I was just like, what should I be eating? But talk about gaslighting. I remember In my mind being like diet has to have something to do with Crohn's disease. It's a gut disorder, right? Like I couldn't believe that was true. And then I went on to prove him wrong because diet did start to change the course of my disease.
But that was probably the biggest example early on of gaslighting, because I was like, am I like stupid that I think diet has something to do with this, but I knew in my heart, and this is one of the things I love to teach patients and even your listeners is at the intuitive level, the patient has information that's valuable.
And if we as clinicians are listening carefully, they often guide us in the direction of maybe the better treatment options. And some of the things I know in your field as well, listening to that patient and really trusting their intuition is such a crucial part of our treatment, right?
Dr. Linda Bluestein: Oh, absolutely.
Yeah. So, so important. And wow, you really, you basically, because of your own personal experiences had this like deep dive into looking for root causes [00:09:00] and holistic holistic approaches. And, um, that's just really incredible and probably has just Made you a better doctor because obviously you've also been through so many different things and understand how everything is connected, right?
I mean, I that's one of the things that still drives me crazy is you know, we we still have silos We still have a lot of silos.
Dr. Jill Carnahan: Yes, and so in this associate people are like, oh well They sent me this doctor in this doctor in this doctor. No one talks, right? And it's all we don't In conventional medicine, it's like the rheumatologist sees the joints and then the neurologist sees the brain and then the gastro, and these organs are all together and especially when it comes to psychiatric symptoms or things, we think the brain is a separate entity.
No, it's totally connected to the body and everything that's happening in the body affects the brain and vice versa, heart and lungs and brain. And so it is fascinating because we do tend to kind of silo this off and it's such a Um, much more holistic perspective that that it takes sometimes to get wellness.
Dr. Linda Bluestein: Definitely. And in [00:10:00] this population of people, so, you know, it's the bendy bodies podcast. So, um, most of the people that are listening to this podcast, they either have personally or they care for people who have, um, EDS and HSD, or they might have dysautonomia, maybe specifically pots. And then they also might have mast cell activation syndrome.
Those are kind of the most common things, you know, that, that we see. Right. Um, I want to first say that anyone listening to this probably is already thinking, Oh my gosh, I wish this episode was longer, um, you know, because we could talk for hours and hours and hours, but of course we won't do that today.
But I want to make sure that you know, that there's a lot of blog posts that are really fantastic on Dr. Carnahan's website, um, about MCAS and EDS and the relationship between EDS and MCAS. So I definitely want to refer you to those blog posts as well. Um, but I want to start talking about. What we call the triad, what we often refer to as the triad, because I, I know that a lot of people are going to want to hear your perspective as a functional medicine expert and how you approach [00:11:00] the triad and maybe even more specifically MCAS, because I did notice in one of your blog posts, you did a great job of discussing, you know, we have the consensus one criteria and the consensus two criteria, and of course, we don't want to get necessarily too much into the weeds, but I would love to know how you approach the diagnostic workup for, uh, that type of patient.
Dr. Jill Carnahan: Yes, gosh, I get so excited talking about this because I remember several years ago when I really started to understand the world that you and your listeners live in. It was such an aha because it put together about a million pieces of data. I had seen floating around like, Oh, this is how it fits together.
And one thing I love to do is solve puzzles. I'm sure you do too. And like, I love the complex chronic patients that have been everywhere and tried everything. Um, because I always feel like I can be hopefully open minded. Good. especially because of my own experience. And I know those of us in this field, I really, um, patients always teach me something.
And if I just listen with an open heart and open mind, there's one part left brain science. That's all that great information. And they, we continue [00:12:00] to learn in the studies and the consensus statements. And then there's this piece of right brain intuition that if we're just open hearted and really listen carefully and allow them the freedom to share their story fully, I learned so much from my patients.
So this was one of those things where I really put it together. So how I view it is. We have kind of MCAS at the top. I think that's probably the driver. And we know that mast cells are these primordial cells that are immune system protection, right? But what happens with this is they get triggered by things, heat and cold and infection and toxin.
And years ago, when I really thought about functional and integrative medicine, I really feel like most of the cases, the complex cases I see are some toxic load or infectious burden combining to create immune. function. So even with the mast cells as this immune dysfunction, we go back to root cause and we can often find toxic load of some sort like mold or chemicals or whatever, or infectious burden.
And we saw this with the pandemic because COVID, COVID happens to be a huge trigger for mast cell activation. And that's been a big trigger for a lot of my patients in the triad. [00:13:00] So this mast cells are the top there. And this particularly affects skin gut endothelium. And this is where it connects to the dysautonomia, the pots, because the endothelium is our regulator of all the vascular system in the whole body.
And if you have either Danlos, which is the third part of the triad, you have collagen issues already. So some of your endothelium is not as strong, you might have more proneness to micro tears and issues. And when that endothelium gets damaged, which can happen with mold, with COVID. with Lyme and co infections and with many other things, viral infections, um, or just either any other toxic insults.
And again, we saw this particularly with COVID because I think COVID particularly affects the endothelium more than other viruses. And then when you get those microchairs in the endothelium, you start to get dysregulation. And what happens is in that dysregulation, what should happen is we have compensation by constriction of the peripheral basal.
Um, you know, system, our vascular system so that we get the blood flow back to the heart. But what happens is our cardiac output is determined by stroke volume plus the [00:14:00] heart rate. And if we aren't getting that preload back because the endothelium has collapsed and we're having pooling of the blood in the peripheral system, then the only way the heart can compensate is increased heart rate because it wants to keep the stroke volume.
So because of that, we get. Potts was his postural orthostatic tachycardia. Can your listeners know this? So when they start to stand up, it's like a water tower. They can't get water up to the head, the top of the water tower. And then the system's collapsing there. The blood pressure is dropping. The heart rate increases to try and compensate.
And that's all kind of a natural. physiological response. But if our endothelium doesn't know how to regulate with heat or cold or toxin or infection, then we have this collapse and we have this inability to get blood to the places like the brain where we need it. And then often patients will have brain fog or they'll have exhaustion for, um, Quite a bit of months after I had my worst case of COVID, I absolutely experienced this myself.
And my experience was when I'd have that hit of dysautonomia POTS, I'd have to lay down immediately because of course, going horizontal would help. [00:15:00] I'd lay down for 20 minutes. I'd feel better. And I measured the blood pressure. Many times I was running 80 or 55, like really low. And I'm sure your patients can regulate or relate to that as well.
So that's the mast cells can drive the endothelial dysfunction. You drive the POTS and histamine is in this and all those. Things that mast cells throw out can cause collapse to the vascular system as well. And then the eithers dam, those, or the proneness to collagen vascular issues makes all of this worse too.
Because our endothelium is made up of collagen, our cervical spy, uh, the how we hold up our neck, so cranial cervical instability can happen and then the whole autonomic system crashes even more. And maybe I'm explaining this fairly simplistically, but when I understood how these things react together and the fact that most of the patients I treat have some sort of toxin or infectious burden as a trigger, I started to be like, Oh, no wonder.
And no wonder that this particular virus really had an effect on a lot of people.
Dr. Linda Bluestein: Yeah, I know for, for me when I first started. My practice, I definitely did not appreciate how significant a role the mast cells played. I [00:16:00] really did not, you know, I was conventionally trained and, you know, had not really heard about MCAS and I'm an anesthesiologist.
So like I knew about anaphylaxis, of course, but didn't really understand these patients that, you know, came in and said they were allergic to, you know, basically life. Um, and yeah, and having had lifelong terrible allergies myself even didn't, didn't really grasp until seeing more patients and then realizing that Treating the mast cell really does seem to help.
So, so when you have people that have so many different things going on, and like you said, toxins and mold and, you know, GI dysfunction and infections and implants and you know, all of these other things, um, how do you kind of tease that apart? Cause sometimes there's probably multiple drivers of that mast cell dysfunction.
Dr. Jill Carnahan: Such a great question. Um, and remind me if we have a moment, I want to tell you about the farm and how I look back and maybe my Crohn's, my breast cancer, and some of my symptoms as a child were all at the [00:17:00] core, maybe mast cell driven. I look back and I'm like, now with this lens, I see my story a little differently.
And I think mast cell played a primary role in my own illness. But for the moment, how do we tease apart the different things? Um, yeah. I do have kind of a layered approach and I feel like the mouse cells is right at the top. And even if you don't know the cause, you're not going to get very far with treatment.
You and I know this so well because patients can say, I can't hardly drink water, right? They have a reaction to the most simple substances. So I feel like at the first thing is Very first thing is limbic system has to be somewhat addressed. I'm not a limbic system expert. I'm not a therapist, but I know a lot of great people out there.
I know a lot of great programs out there. And I always like to get the patient thinking about how does my limbic system and my own personal safety, my feeling of safety inside my body. Affect my mast cells because I, what I realized is if we don't go to that level and start doing the work around feeling safe in our bodies, no amount of treatment or treating infections will shift that.
So I always get them involved [00:18:00] in Gupta or DNRS or, um, primal trust or any number of great programs out there or a therapist or somatic therapy or reading Gabor Mate or Peter Levine or any of these things where you're starting to think about how safe do I feel and do I have unaddressed trauma that's really level one in conjunction with.
the mast cell. And then the very first thing I always do is start to layer, um, really according to the consensus too. I love that criteria and paper, um, because it gives us the ability to clinically make a diagnosis and do interventions. I do the tryptase and the histamine and the prostaglandins as far as diagnostically, but I never rely 100 percent on those because you can miss it.
and you can not catch it and patients can still be ill. So if they have the clinical criteria with more than two systems, and then they respond to treatment. So, and then like you, I'm sure I layer the different, uh, H1, H2, and the natural ingredients and try to start to stabilize that system enough so that we can start to look deeper.
And then I'm looking for infections. Lyme and co infections are really common. So our [00:19:00] viruses along COVID, um, and trying to tease out like which layer of those infections is significant for this patient. Some of them have more of a viral layer. Some of them have more of a tick borne or, uh, vector borne illness like Bartonella, Babesia, Ehrlichia, or Bart, uh, Borrelia.
And then other people, a lot of people have mold, um, exposure. In fact, I think Dr. Theoretes and probably Dr. Afrin has said that mold is the number one trigger to mast cell activation. I don't know if that's still true, but I think it's very high up there on the things. And of course I do a lot with mold illness, so I'm always checking that.
And in those layers, I always think the toxic load is probably the first before I do infections because often the toxins like mold, for example, mycophenolic acid, one mycotoxin that mold produces is a known immunosuppressant. And is used to make the drug CELCEPT, which is used in organ transplants. So, it's like a known, if we see mycophenolic acid, we know their immune is suppressed.
So, before I go after infections, I want to see if I can get that immune system back online [00:20:00] and treat the toxic load. So, I usually do limbic system, mast cell activation, toxic load, and then infections last.
Dr. Linda Bluestein: Oh, that's great. And I, I love, I love DNRs and Gupta and Primal Trust and all of those as well. I think it's so, so important.
And what I really like about that too, is when I was asking people for questions and to ask you today, um, a lot of people had some really, really great questions. And a lot of the questions had to do with, you know, how can I How can I basically take this functional approach, but make it more cost effective because they don't have, you know, the ability to, yeah, yeah, so, so I think that, uh, something like the Gupta program, you know, um, and, and those things are from a cost benefit standpoint, I think are really, really beneficial mold is, I feel like a, a tricky one because of course, depending on what, where you live, uh, remediating the mold is, Expensive, right?
And so do you have any like hacks or [00:21:00] anything that people can do if they suspect that they might have been exposed to mold, but they can't really afford the, you know, the first class approach, but they might need to do more of the like, you know, the coach or economy class. You got it.
Dr. Jill Carnahan: Yeah. And I love talking about that because I think this should be able to be reached by everyone out there, no matter what your resource levels and do something to help you.
Right. So let's talk a brief a bit about mold mold. First of all, is often, even if you don't have time or ability or money to do expensive testing. If you just take a great history, which you can do this without a doctor, you write a timeline. When did you last feel well? And when did you not feel well? And in between there, what happened?
Did you move? Was there a water leak? Was there a flood? Was there a massive emotional trauma, loss of a parent or loved one? So you can kind of make a timeline and look at what. things since I last felt really good have changed in my life and then start to put together yourself what things might have changed, especially if you moved, there was a change of environment, if there was a flood, if there was a leak in your house.
So thinking about those things, most mold [00:22:00] comes from intrusion of water into a building. And so what happens there is again, if your windows are leaky, if your attic isn't properly sealed and there's condensation, if there's a. fridge line, a washer dryer leak, a dishwasher leak, and it can go under the flooring into porous materials, a bathroom tile that isn't properly installed.
There's no vapor barrier, a tub that's leaking over the side onto the floor. Um, any sort of water intrusion on the porous materials could cause mold as minor as it might seem. And most people know historically either what their house since they've lived there or maybe right before they moved in. So people can kind of put together that.
And just, uh, actually taking a good history of your house and thinking about any water intrusion, water damage can often get you to the source of the problem. Um, what I do for cost effectiveness is if someone suspects that, um, first of all, again, symptoms consistent with that are helpful. So history is free.
I do visual contrast testing online or in person. We have it in our office and that is basically testing the visual acuity of light and dark of your eye. And it [00:23:00] has been associated. From the 1940s, it was used with the armed forces to detect biotoxin exposure, which is other chemicals. It's not always mold.
And if you fail that, that's just one more thing. And it's again, it's a cheap, easy or free way to do a test to say, could this possibly be mold? And that's called visual contrast testing, VCS for short. You could do it online for free or at some sites for 10 or 15. So those are cost effective ways. And then if we suspect some of those symptoms.
And maybe we do a urine mycotoxin test, which does not necessarily mean you've been exposed to mold. You could have a positive urine mycotoxin test and have eaten moldy foods or eaten peanuts or something. So that is in and of itself a diagnostic test, but it can be helpful. Then what I usually do for the environment is have them do a dust sample that does qPCR.
So qualitative PCR in the dust will give kind of a historical footprint. Most tests are about 300, so fairly affordable. And that just gives us a historical snapshot of your home or workplace. And I can look at those and see, is there lots of toxic [00:24:00] species? How high are the levels? And then we can go get an inspector to find the source, but that all cost effectively kind of gives you a way to start pretty easily.
Even for me and my office and my home, usually every couple of years, I'll do a dust test just to kind of check in and make sure the environmental. Uh, quality hasn't changed and then if you can't remediate or you have a landlord that you can't move or you have a lease that you can't get out of or you have a workplace where you can't leave, number one principle is dilution is the solution to pollution.
So what I would say in some situation like that is open windows, get airflow when possible. Change your furnace air filter, get a standalone air filter in your bedroom at the very least. With the standalone filters, you want at least HEPA with VOC, so you have both the volatile organic chemicals being filtered and the HEPA does the particulate and the VOC goes down to Um, micron size 1.
0 and 2. 5. So those really small, tiny nanoparticulate will be filtered if you have a good filter like that. And I've seen people in a moldy home that just get an air filter and start to feel better. [00:25:00] Um, I wouldn't say that's the only solution they still usually need to get out or change it or remediate.
But sometimes it'll buy them time. Another thing that can buy time if you can't move or you have a landlord or you have a six more months in a lease is if you do a dry fog and a very deep clean, that'll take away the dust that's carrying those mold and mycotoxins. And a lot of times it'll buy you six months of feeling better until you could move or get out of that situation.
The caveat is ultimately you really cannot get well, especially with mast cell and associated disorders. If you have a chronic, severe mold exposure, it's just almost an impossibility.
Dr. Linda Bluestein: Wow. And the dust collection and, and dry, um, dry fog, uh, does it matter where the dust, where you collect the dust from? And then the dry fog, how, how does that work?
Dr. Jill Carnahan: Yeah. So the dust collection, every kid will be slightly different. Some of them will say, don't do the floor, do two feet in above. Some will say, make sure you're doing like things that, um, like say you're, uh, Most people's like a water heater hasn't been cleaned for decades, right? So if you go to that dust, that's going to be a [00:26:00] very skewed result of 20 years maybe versus like a couple weeks.
So usually you clean the house and wait two weeks after you clean to collect the dust. I do collect on top of cabinets. places that maybe haven't been cleaned recently, but not something that hasn't been touched for years. So that's kind of the caveat. And then, um, uh, some tests will say, don't do kitchen and bathroom.
But if that's where you suspect the issue, I say do the kitchen and bathroom. So most of the time you do one test for like upstairs, one test for downstairs. If you need cost effectiveness, you can do one test for the whole house. The only caveat is that you wouldn't know exactly where that load is coming from.
So usually I tell people to test the basement separately from the upstairs if and if it's two levels and don't put the garage in there. So basically your living area and get dust from all over the place and it'll kind of tell you how much they need. Then you send that in and they'll check basically DNA in that dust for mold species.
That's called an ERMI. Now I don't like the term ERMI because ERMI came from data that was actually not validated and it's a way of scoring. But the PCR from the ERMI is still valid. That's [00:27:00] just the test that detects DNA of mold in your dust. There's a newer test called EMA that does mycotoxins, which if you think about if you had a fire in the middle of your living room and you damaged all the carpet and the rounding areas, and then there was smoke and caused smoke damage to your home, that's a great way to think about mold and mycotoxins because the mold itself is like the spores, the center where the mold is.
That'd be like your fire. So if you clean and remediate, you actually cut out all the areas that were burned by the fire, which is the mold. But what happened when that fire was burning was smoke got into your curtains and your books and your other things in your house. So you also need to clean the mycotoxins, which are very tiny particulate that have gotten into your clothing and into your furniture and into your house.
And that's where the dry fog can be very, very helpful because it'll kind of bring down all the loaded and the air and the dust to surfaces. And then you follow that dry fog with a wipe down clean, they call it a small particulate clean, which is really just a very, very, very thorough cleaning of your walls, your ceiling, all your surfaces.
And that alone, even if you still have a source [00:28:00] of mold, it won't cure that source behind your wall, but it will take down the load so that most people start to feel better pretty quickly after the dry clean. And the sorry, the dry fog and the clean and the types of dry fog. There's a couple botanical citrus based products.
There are a clove based products and then there's commercial based products. They all work. I tend to like the botanicals better. Um, but again, there's many different ways to do that fog.
Dr. Linda Bluestein: Is that something that's covered in any of your blog posts? Like specifically what botanical uh, products to use? Cause you know, we just talked about toxins too.
And so you want to make sure you're using the right products.
Dr. Jill Carnahan: Yeah. Yeah. And there's a citrus based one. Some of our mast cell patients react to citrus, right? Right. Cause it's citrus oil based. So, um, then the clove is better or the commercial. Um, yeah, my free mold guide, I'll be sure and send you guys a link to that.
Um, for show notes, it has all
Dr. Linda Bluestein: that in it. Perfect. Perfect. We will definitely have that in the show notes. We are going to take a quick break and when we come back, we are going to talk about mass cell activation syndrome a little bit more and the effects on the brain, [00:29:00] especially when it comes to psychiatric conditions.
We'll be right back.
This episode of the bendy bodies podcast is brought to you by EDS guardians, paying it forward in the Ehlers Danlos syndromes community patient to patient for the common good. I am proud to serve on the Inaugural Board of Directors for EDS Guardians, a small charity with a big mission and a big heart.
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All right, we're back with Dr. Karnahan getting such great information, and I think one of the things that is so important, especially nowadays when there's such a high prevalence of things like, you know, mood disorders and, you know, anxiety and depression, and of course we have so many stressors right now in life, of course, and, you know, it seems like we're seeing more bipolar illness.
We're seeing more autism, ADHD, things like that. I did see in one of your blog posts, you had a great, great series of comments and, and everything about mast cells and the role in the brain and how they're involved in psychiatric conditions. Can you comment on that at all?
Dr. Jill Carnahan: Yes. And this was another one where I was like, Oh my goodness, this makes so much sense.
So years ago, I remember reading a study and this was mind blowing to me. And it was the histamine levels associated with IQ. And I was like, what, what in the world? It was a study that showed in a certain population they had studied that they saw an association with level of [00:31:00] histamine and IQ. And I thought, how in the world, but of course we know histamine makes us more alert, more focused in some ways.
And so I thought, well, why not? But what we also know is that some of the things that mast cells produce have a psychiatric effect on the brain, um, and some of these neurotransmitters and neurochemicals. And so it. It makes sense to me. And you think about pretty much anyone who takes Benadryl or a class, you know, the early, uh, classes of H1 blockers that will have kind of brain.
I know it just makes me feel really dumb. I can't think at all. I'm tired. I'm sluggish. I'm like, totally. And we know now that even acetylcholine inhibitors or H1 blockers can be related long term use to dementia. There's kind of a risk advisory for those who are elderly not to take high doses long term.
And again, lifelong use of those could be a detrimental. And again, these are histamine blockers. So histamine alone has a massive effect on the brain. Um, and in the pros, it helps with alertness a little bit goes a long way, but then too much can [00:32:00] cause us to be anxious. Insomnia is a piece of that puzzle.
Um, and even some of the psychiatric disorders like, um, mania or, um, even, uh, uh, schizophrenia. have been associated with high histamine levels. And now I sometimes wonder, I recently went as far as to say, I wonder if most psychiatric disorders, if not all, are actually organic based, meaning like there's chemicals and things, not just like I was born depressive or I'm someone who's prone to depression, whereas actually it might be an infection or a toxin or a mass selectivation that's actually creating some of these issues.
So the histamine was particularly fascinating because there's very good correlation with, um, Uh, just the ability of the brain to focus, but then again, it's a fine line between enough. It's Goldilocks, not too little enough and not too much either.
Dr. Linda Bluestein: Yeah, that's so interesting. And so basically treating the mass cell activation syndrome should potentially have effects everywhere in the body, including in the brain.
And so that would be the. Basically, it's funny as
Dr. Jill Carnahan: I've looked, I'd [00:33:00] love your opinion, but in some of the papers I've looked at with mass selectivation, um, the number one symptom is what patients call brain fog, which is kind of the sluggish cognition. Maybe word finding difficulty. Maybe they describe it slightly different.
Like brain fog is not a medical term, right? You and I use it a lot. And it's true. Like it's a great, patients just know what you mean, and they can describe it that way. And again, anyone listening who's had it knows what they, knows what we mean here. But the truth is that is probably cognitive issues are the number one symptom of mast cell activation.
So it's very related to the brain.
Dr. Linda Bluestein: Yeah, so, so important. And we've talked about a lot of different approaches and things like that. And I think diet is something that You know, definitely, uh, should have learned a lot more about nutrition and medical school for sure. I can't imagine any condition where nutrition isn't important.
What kind of things have you found most beneficial in your patients? And in particular, if you're thinking of ones that might be experiencing the triad.
Dr. Jill Carnahan: Yeah. So again, if I look back, it's so [00:34:00] interesting because I put together, oh, I think so many of my things. And when I was a child, I had severe eczema, severe allergies, which of course are in the atopic kind of mast cell category.
And then lately we've looked at even breast cancer and Crohn's has some association with mast cell activation, some of the pain syndromes and things. So I look. And I'm like, I wonder if I just had that high proneness to muscle activation and it was one of the pieces of all of my history of illnesses.
And then even reacting because I think some of the atrazine and glyphosate and chemicals on the farm were part of the trajectory that led to my cancer and Crohn's. So in my history alone, but what I've seen, um, diet wise was. When I first got the Crohn's disease, I just looked in the literature and was trying to find because the doctor told me nothing, you know, diet had nothing to do with it.
But I was like, gosh, that can't be right. So I wanted to prove him wrong. And I first found specific carbohydrate diet from Elaine Gottschall, which has been used with Crohn's and colitis. And it really, um, eliminates the fodder, the, the feeders for small intestinal bacterial overgrowth. So certain disaccharides kind of, [00:35:00] it was kind of like the first.
And of course, that makes sense because it tends to pull out the foods that would feed the bacterial overgrowth in your small intestine. And that started to work, but you know, Linda, what was so interesting to me that worked the best, and I didn't even know it was a diet, but I accidentally started avoiding high histamine foods.
Oh, really? I knew bone broth bothered me. I knew that like aged meats and cheeses, smoked salmon bothered me. All vinegars made me so sick. So vinegars fermented. So all of these, and later I was like, Oh, all of these foods are high histamine, even avocado and spinach. And years ago when I was so sick, I couldn't tolerate it.
any of those things, not even a touch of vinegar. Um, and, and bone broth is wonderful health food, right? For many of our patients, those are high histamine foods that they do not tolerate. So for me, it was so funny because I kind of accidentally fell up on a low histamine diet and realized I was doing better.
And if I have to look back and say, what was the one most dietary intervention that most helped with your Crohn's disease? [00:36:00] It would absolutely be a low histamine diet. And again, I didn't even know it back then. So I would stay, stay still with my patients between oxalates and salicylates and histamine and all these things that they could avoid or yeast or mold.
Histamine tends to still be the most, um, biggest driver of success when patients start to feel better in these categories. And for me, even today, I can tolerate a lot more histamine than I used to, but I'm still on a relatively low histamine diet. Even today.
Dr. Linda Bluestein: Yeah, I think that's the challenge is we see these different dietary recommendations and then you think, well, what can I eat?
You know, it looks like you can't eat anything. So then so then you start to get really, uh, you know stressed out about that and some people end up eating very very few foods and then they Try to figure out. Well, how do I possibly add foods back in? And that was one of the questions that was asked, you know, and of course, we know so many people are symptomatic in so many different ways.
And of course, if they eat a food and they actually get like an anaphylactic or anaphylactoid [00:37:00] reaction where their throat's closing up, like then they know, don't eat that food again, their lips swell, whatever. But otherwise, yeah, You know, short of that, um, do you have any tips for knowing like what symptoms might be safe enough?
And then we also know that people, you know, it's, it, it's hard, it's hard to correlate things because it's not like they feel great all the time and then eat something and then it's.
Dr. Jill Carnahan: Okay. So I have a real good way to think about this. First of all, we think about how do we break down histamine? We have our genetics and some of those things, there's DAO enzymes and there's MAO and there's different enzymes, lots and lots of them that we can actually look at and say, do you have some issues with like production of DAO?
And then what you can do is add back. Um, some of the things you can either add quercetin or, um, luteolin or any of these things that will help. Or you can give DAO enzymes with meals so you can add back some of those things that might be missing. Cause it's usually either your genetic ability to break down histamine, um, or the gut can have a lot to do with this because some of our microbes, if we have overgrowth of [00:38:00] bacteria, certain bacterias actually create histamine in our gut.
So treating CBOCFO, overgrowth of bacteria. Fungi in the gut will also lower histamine load and then giving the products that we need to break down or treating the mast cell activation. Those are all ways to help. Um, and the other thing I feel like is what happens is usually if you have a histamine will create more intestinal permeability.
So that dumping of the gut contents into the bloodstream, there's only one cell layer between the gut lumen. and the bloodstream. And so if we have a very permeable gut and lots of dysbiosis, we're going to be dumping a lot of food antigens into our blood. So if you go to root root cause, yes, you can take out the foods, but then you're stuck with this like four food diet and I never liked to keep patients there.
So you have to go back to the root, which is the histamine probably created permeable gut. And you have to really shore up that gut so that you're not leaking all the contents into the bloodstream because at the. core of all this is an overwhelm of the immune system. What we usually look at is IgG4 or IgG antibodies to [00:39:00] determine some of these long term reactions and delayed sensitivities.
And those come from some antigen crossing over from the gut into the bloodstream and the immune system seeing the antigen like corn and creating an antibody to it, but it's a blood issue. And that that's from a leaky gut. So if I see someone light up like a Christmas tree on a test for IgG food allergies, I know the root issue is leaky gut.
And I have to treat that leaky gut and not just take out all the foods because they're just going to forever react to the next food. Say they're on buffalo and pear and pineapple, and that's the only thing that you need for one weird example, right? Um, but eventually they're going to develop sensitivities to that if they still have a leaky gut.
So I know I have to go back to the gut and you can't heal a leaky gut if there's severe dysbiosis, if there's bacterial overgrowth. There's pathogens, so you really have to treat the pathogens, treat the overgrowth, then start to heal the gut with things like glutamine or bovine immune globulins or colostrum or butyrate, butyric acid.
So all these things will start to shore up the gut and then make sure you're treating excess histamine [00:40:00] with DAO enzymes or histamine blockers or whatever things you're doing for the mast cells. And then you start to add back foods as tolerated. And even with my history of Crohn's 20 years ago, which I consider cured, I don't have any symptoms of it anymore.
Um, I have a much broader diet than I used to, but I still avoid dairy and gluten and corn and soy and certain things that I will, I don't have any desire for those things, but my limits are so much less limiting that they used to be 20 years ago, and that's what we want to get patients to.
Dr. Linda Bluestein: Yeah, definitely.
Because we know that you can end up with so many problems if you do eliminate so many things and, and, and it's, it's also really hard socially. Do you have any tips for people with, you know, if you want to go out with friends or whatever? I mean, even, even some of the things that you mentioned are, it's still hard if you want a restaurant or, yeah.
Dr. Jill Carnahan: Um, yes, I do. First of all, the most important thing is trust yourself because what happens is whether it's alcohol or food or gluten, we get in that situation and be like, Oh, come on, sweetheart, [00:41:00] you can have a glass of wine or they'll be like, Oh, come on, have a piece of bread. Cause they don't want to feel guilty cause they're consuming.
And again, who cares what they do? But the first thing is being so confident that you know what's best for your body and that it's the self compassion that you're giving yourself in that situation. Because that peer pressure can be, and especially I treat a lot of teenagers and college kids, it's really hard for them.
So I like to empower them to say, no, you know what you need. And don't be afraid of someone telling you because they're just whatever issue they have, it's not your issue. So that's first be confident. Second thing is talk to the waiter, talk to the chef. I all the time say, Hey, can you do this thing with this, without this and add this?
And like, I create my own menu because I know there's salmon on the menu and there's a broccoli on the menu. And I want to put those two together without any oils and I want olive oil. And I'll just basically tell them, as long as you're in a restaurant, you can often just ask, can you use this oil and not this and add this.
And I'll often have really, really good meals. And I've just told them I want this dish and they make it. And most places nowadays are pretty accommodating for the most part. The other thing is [00:42:00] travel. Right. Um, I do, I never count on airport or airplanes for good food. I literally, every time I fly, which is a lot, I pack a cooler with chicken and salad and nuts and seeds and all the things that I know I can eat.
And sometimes I've gone to Australia before with a 16 hour flight and I've packed like three meals. For the plane for that whole time. And the thing, if you don't know this, if you're going through an airline where you have an extra bag and it's the cooler, and you say for medical necessity, for food allergies, I need the food.
Um, I always get through with that extra cooler bag as a, it's usually a third bag because I have my purse and my laptop, right? And medical necessity, they have to accommodate. So if you really have food allergies, you can even have a doctor write a note. I usually just. Say it, but I always bring food with me for travel because I, I know in the airports, that's the most likely to get contamination and airline food is even worse.
Dr. Linda Bluestein: Oh my gosh. Yeah. Airline food is so terrible. And that's such a great tip about, cause when you were saying that I was thinking, okay, already, usually most of us have a fair number of things. So, so that's a, that's a [00:43:00] fantastic tip. And when it comes to, um, you know, looking at toxins, cause we talked about that quite a bit, of course.
Um, one of the things I was thinking about was, um, in terms of like, I know one of them in one of your blogs, you talked about increased exercise and sweating. And I have a theory about, you know, people with EDS and POTS, that they have an extra challenge with this because, you know, they struggle to put that load through their tissues.
Enough that they can actually sweat. And then people with MCAS and POTS, of course, also struggle with heat and they struggle with being upright. Um, do you have any tips for people who, and I know you can use sauna as well, but of course, if you have POTS, you might have difficulty or MCAS difficulty with sauna, but you know, I look at my husband who's, you know, really, really healthy and he'll come home from a bike ride and he's just.
Drenched in sweat. It's like, this is so great. He got rid of all these toxins. But me, I have EDS. I have all these other challenges and I haven't really been able to sweat like that for a long time. Do you have any suggestions? Because it seems like that is an important aspect.
Dr. Jill Carnahan: Uh, gosh, I love that and I think it's [00:44:00] so true and I struggled the same thing.
Um, the thing that I found that's helped me the most is take way more salt than I ever think I needed. Right. So if I am, uh, what I find is, I mean, if I'm doing a run or doing anything active and now I'm doing so much better with the pots, but always, and even I mentioned how I feel, I feel like. I always call it almost like narcolepsy I got to lay down now.
And then I look at my blood pressure. It's like, like I said, 85 over 55 or something like, Oh, no wonder my body's like get horizontal, but I've known now it's not a stimulant. It's not, although some people count coffee helps stimulants help. And you know why that is. Norepinephrine is one of the things that causes vasoconstriction peripherally.
So if someone has an adrenal disorder where they are extremely low production of mineral corticoids, which keep the volume in the vascular system and they're not producing norepinephrine, they're going to have a lot more difficulty with POTS and dysautonomia because the one thing neurotransmitter wise that helps us is that norepinephrine.
So um, and that's where I got back to like coffee might help some people, not always. But some people it does cause it raises norepinephrine. Adrenal support has been crucial for me and many [00:45:00] of my patients. It could be herbal. It could be glandular, even hydrocortisone in some cases that are appropriate.
Um, that's so powerful. Um, but what I found is just seawater packets or salt can be the absolute game changer when I fill that narcoleptic, which is my low blood pressure pot syndromes. I get salt water and it almost always perks me up.
Dr. Linda Bluestein: And when it comes to herbal products for supporting the adrenals, what would you suggest, do you have any specific suggestions?
Dr. Jill Carnahan: Yeah. So, uh, gosh, almost every company has a adrenal, um, that has rhodiola, ginseng, ashwagandha, Siberian ginseng is real nourishing or any combination of those. Some of them have tyrosine, which is a precursor of thyroid and adrenal, or they might have a pantothene or B12 or some of those as well. Um, the biggest changers for the severe patients I think are the adrenal glandulars and they're just called adrenal like.
Thorn and pure and they all have like a simple adrenal glandular and those can be, I always think [00:46:00] of it as like the herbals are the most gentle and they're adaptogenic. So high or low cortisol might benefit. If you really have low cortisol, low neurotransmitters like norepinephrine, adrenaline, um, then you might do better on the adrenal glandulars.
And then the next step is the hydrocortisone, which is prescription. I think of it as bioidentical cortisol for the patients who are really, really sick. Sure. Sure.
Dr. Linda Bluestein: Okay. That's really great. And in terms of functional medicine, I mean, I remember when I first learned about functional medicine, I was like, wow, this is, it was like all the things that I didn't learn in medical school that seemed like they were so useful.
And it was like, wow, taking this really detailed history and like learning all is like, wow, this is so helpful. So can you explain maybe, um, really quickly, cause I know we're running out of time, um, how a functional medicine doctor might be beneficial or, and, or how, you know, if they're a good fit for your specific problems, if you do have the triad.
Dr. Jill Carnahan: Oh, great question. Cause just like you, you and I know this, there can be functional doctors that are great for hormones, [00:47:00] great for the gut. They don't even know what the triad is, or they don't know what Lyme disease is or never tested, or they don't know what mold is. So First thing is, if you really know that one of the triggers is Lyme disease or mold, um, ILADS is a great organization that treats just Lyme.
They're really good doctors who've been trained to treat, um, comprehensive tick borne infections. That's I L A D S. I C I I S E. E. A. I. Is an organization that is more environmentally acquired illness. So the mold doctors are going to be the ones that there and then your function medicine doctor, the thing about that compared to and you and I both were trained conventionally.
So we're taught to take these symptoms and find the most common factor that Presents with a diagnosis and get this code that gives a label and there's nothing wrong with that because what we do is map what's going on and we describe the symptoms, but that's just the start. So that's the start. But what we did is allopathic medicine.
We ended there. We said, okay, here's the diagnosis. Now we have the end. Here's the drug. And again, nothing wrong. If you have a heart attack or stroke or you're in a car accident, [00:48:00] you want to go to the best allopathic hospital and get treatment right away for those things. But if you have chronic, complex, mysterious illness or symptoms, you need a medical detective.
And that's the best way to think about functional medicine is someone who's going to say why. We know the code. We know the labels. We know we have MCAS, EDS, POTS, all these, you know, terms, acronyms. But we want to say, why is that being driven? Or say you have diabetes. Well, you don't just Tuesday have no diabetes.
And then Wednesday you walk over and become diabetic. There's always a trajectory of wellness and illness. And I, as a functional doctor, and you out there are going to want to say, where are we at on that trajectory? And are you walking towards illness or away from illness? And how can we get you reversing the processes that led you to this point?
And in order to do that, you have to ask the question why you have to dig a lot deeper into the physiology, the nutrient deficiencies, the excessive toxic exposures, and all the many, many things in our environment and in our food and in our homes and in our genetics that are playing into that. And then you reverse engineer and say, is there any [00:49:00] way in this situation where we can start to reverse that process and maybe get to the root cause and change this trajectory?
Dr. Linda Bluestein: Okay. I love, I love all of that. That's great. Okay. Um, we end every episode with a hypermobility hack. So you've already given us so many fantastic tips, of course. Um, but if you have a hypermobility hack, I would love to, to end with that. So some kind of quick win for people who are again, dealing with hypermobility or other aspects of the triad.
Dr. Jill Carnahan: We love it. So the big thing obviously is treating MCAS, which we've talked about this whole time. And I want to say that because I think that's the big hack is you, if you treat the mast cells, you often become less sensitive to the hypermobility, but a really practical thing. Um, and again, you guys are the experts even more than me here, but I find that some things that we think are good, like a certain types of stretching or, uh, frequent chiropractic adjustments are things that again, can be great for another person.
I love chiropractors. But for some of us with [00:50:00] hypermobility, moving the body too much in certain ways can actually do more harm than good, and it's kind of counterintuitive. So the types of exercise matter, the types of stretching matter, and the types of, um, manipulation, even massage therapy matters. So you want to make sure you get someone who understands hypermobility because some of the therapists out there can do more harm than good if they don't know what they're doing.
Dr. Linda Bluestein: Yeah, no, that makes perfectly good sense. Well, Dr. Carnahan, thank you so much for taking the time to chat with us today on the bendy bodies podcast. I'm so grateful to you. I know you're super, super busy and I really appreciate your sharing your wealth of knowledge with us.
Dr. Jill Carnahan: Thank you for having me and thanks for all the wonderful work you do for this population.
I feel like this is one of the most important areas that we could be focusing on. And it is absolutely an honor to be here with you. Oh, wonderful.
Dr. Linda Bluestein: Well, thank you.
Wow, that was such a great conversation with Dr. Carnahan. I'm sure that you found that really helpful and took [00:51:00] away some really valuable tips. And I want to thank you for listening to this week's episode of the Bendy Bodies with the Hypermobility MD podcast. You can really help us spread the word about joint hypermobility.
Mobility and related disorders by leaving a review and sharing the podcast. This helps raise awareness about these complex and often missed conditions. If you would like to dig deeper, you could meet with me one-on-one by checking out the available options on the services page of my website@hypermobilitymd.com.
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Dr. Jill Carnahan Bio – updated 11/2024
Dr. Jill Carnahan is Your Functional Medicine Expert®. She is dually board certified and is the founder and Medical Director of Flatiron Functional Medicine. As a survivor of breast cancer, Crohn’s disease, and toxic mold illness she brings a unique perspective to treating patients. She specializes in searching for the underlying causes of illness through cutting-edge lab testing and personalized medicine protocols.
Released in 2023, Dr. Jill's Best Selling book, Unexpected: Finding Resilience though Functional Medicine, Science, and Faith is a powerful prescriptive memoir that will have you laughing and crying with her on the journey, leaving you with the key resources you need
to achieve optimal health and wellness. She is also executive producer, film writer, and featured in an award winning new documentary about her journey overcoming chronic illness
called Doctor/Patient, now available streaming online and on Amazon Prime.
As a popular inspirational speaker and prolific writer, she shares her knowledge of hope, health, and healing live on stage and through newsletters, articles, books, and social media. Patients and fans alike are encouraged by Dr. Jill’s science-backed medical knowledge delivered with authenticity, love, and humor. She is known for inspiring her audience to thrive even in the midst of difficulties. Be sure to follow @drjillcarnahan on Instagram for access to all her content.