This article was updated on January 12th, 2023.
Your body is like a highly complex, intricately interconnected community – with each and every cell, organ, signaling molecule, and fiber of your being doing its part to keep things running smoothly. And no part of this “collective community” does more to protect and defend you than your immune system.
While this sophisticated system always has the best of intentions when it comes to vigilantly defending you, sometimes your immune system can get thrown off-kilter – causing more harm than good in its attempt to keep you safe. One such instance in which your immune system can mistakenly do more harm than good occurs when specialized immune cells known as your mast cells begin misbehaving – creating a condition known as mast cell activation syndrome.
Today we’re going to explore exactly how your immune system works, what mast cell activation syndrome is, what sets these misbehaving mast cells off in the first place, and most importantly – explore some tried and true along with some brand new treatment options when it comes to addressing this complex condition. Let’s dive in.
Innate Immunity Versus Adaptive Immunity: What’s the Difference?
Your immune system has two main branches of response which are:1,2,3
- Innate or nonspecific immunity: Innate immunity is a rapid, nonspecific response system that is your first line of defense against invaders designed to actively clear or eliminate pathogens. Innate immunity includes things like your cough reflex, your skin, stomach acid, or mucus as well as the release of proinflammatory signaling molecules that sound the initial alarm to activate the rest of your immune system.
- Adaptive or specific immunity: Adaptive immunity is a much slower, but much more precise immune response. This branch of your immune system deploys specialized immune cells and proteins known as antibodies to attack, neutralize, and destroy foreign invaders. These specialized proteins and immune cells then work in conjunction to form an immunological memory – streamlining the immune response and preventing disease in the future by remembering what specific invading pathogens look like.
The two response systems were once considered separate, with adaptive immunity thought of as the more sophisticated and potent of the two. However, researchers are noticing they are extensively interdependent – and one of the key players in this crosstalk is a highly specialized cell known as the mast cell.
What Are Mast Cells?
Mast cells are complex, highly evolved immune cells that can be found scattered throughout your tissues and are especially abundant in tissues that are in frequent contact with the environment – like your mucus membranes and digestive tract. These tiny cells are found in higher concentrations in tissues exposed to the environment because they serve as sentinels – almost like police or soldiers laying in wait and guarding the perimeters of your organs.4
When a threat is detected, your mast cells launch into action – immediately firing off a cocktail of inflammatory mediators in a process known as degranulation. These pro-inflammatory signaling molecules sound the alarm – igniting the immune response and beckoning other immune cells to join the battle. As more immune cells make their way to the site of the threat, your mast cells continue to create and release a steady stream of signaling molecules – reloading their weapons and stoking the cycle of inflammation.5
Now before we dive any deeper into your mast cells and what can happen when they begin malfunctioning, let’s rewind a little bit and explore how your mast cells even become activated in the first place. It all comes down to specific receptors known as toll-like receptors.
What Are Toll-Like Receptors?
If mast cells can be thought of as sentinels (like our soldiers and police), then toll-like receptors (TLRs) are likely the equivalent of a smart home security system. Similar to how today’s security systems are packed with sensors that alert you to intruders as well as natural disasters, TLRs recognize foreign invaders in your body and send out signals that activate mast cells.
TLRs accomplish this feat in a process that goes something like this:
- You see, each species or strain of pathogen has its own unique structure or molecular pattern known as pathogen-associated molecular patterns or PAMPs
- As these pathogens make their way throughout your body, they inevitably bump into your cells – including mast cells
- Your mast cells (and other immune cells) contain a variety of receptors capable of recognizing specific pathogen patterns – including toll-like receptors
- When pathogens bump into mast cells' TLRs, these receptor sites essentially detect and latch onto the microbes' pathogen-associated molecular patterns
- Once a PAMP is bound to your mast cells' toll-like receptor, your cell releases molecules that launch your immune system into action and activate other immune cells
Most microorganisms (including viruses, fungi, bacteria, and protozoa) express PAMPs – meaning TLRs are able to sense just about any infection we might encounter. Just a few examples of specific PAMPs that TLRs can identify and bind to include:6,7,8,9
- Bacterial lipopolysaccharide (LPS): A toxin found on membranes of gram-negative bacteria
- Lipopeptides: Structurally-diverse metabolites produced by bacteria and fungi which help them during the colonization of new habitats and during the formation of biofilms
- Lipoteichoic acid: Cell wall component of gram-positive bacteria that plays important roles in infection and inflammation
- Peptidoglycan: A bacterial cell wall component
- Bacterial flagellin: A globular protein that is a significant contributor to bacterial invasion, and has also emerged as a potent immune activator
Now let’s zoom in on exactly what happens once these PAMPs bind to your TLRs and how these specialized receptors help your body fight infections.
Toll-Like Receptors: The Link Between Innate and Adaptive Immunity
Upon binding to PAMPs, your TLRs activate downstream signaling – resulting in cascading reactions where mast cells mount an immune response. Mast cells participate in the direct defense against invading pathogens in a few ways:10,11,12
- Phagocytosis: Mast cells are able to engulf or ingest pathogens to directly neutralize them. However, due to the relatively small number of mast cells typically found in most tissues, phagocytosis is only a small piece of the puzzle when it comes to the role mast cells play in pathogen elimination.
- Production of antimicrobial peptides and reactive oxygen species (ROS): When mast cells degranulate, they release molecules such as antimicrobial peptides and reactive oxygen species that damage and neutralize invading microbes.
- Adaptive immune cell activation: Mast cell degranulation releases a variety of different proinflammatory signaling cytokines, chemokines, and lipid mediators. These signaling mediators initiate the process of inflammation – activating and calling in the T cells, B cells, and dendritic cells of the adaptive immune system. These adaptive immune cells migrate to the site of the threat and begin launching an attack against the invader – sparking the initiation of the adaptive immune response.
So in simplest terms, your TLRs act as a link between your innate and adaptive immunity – serving as the spark that ignites your adaptive immune response and launches it into action. Now let’s explore how your toll-like receptors can become overactivated and subsequently trigger your mast cells to become overactive – resulting in a condition known as mast cell activation syndrome.
What Is Mast Cell Activation Syndrome?
In a normal response, exposure to irritants, pathogens, or environmental toxins triggers the activation of TLRs – subsequently activating your mast cells and starting the inflammatory process. When the trigger is removed, inflammation subsides and your mast cells return to their baseline – standing guard and waiting for the next threat. But when exposure to triggers becomes chronic, and your TLRs are continuously activated, it can cause your mast cells to become highly sensitive and over-reactive.13,14
In mast cell activation syndrome, or MCAS, chronic TLR activation creates hypersensitive mast cells that get stuck in overproduction mode – setting off an inflammatory response that can spread throughout your body. These malfunctioning mast cells can create a domino effect that can lead to a variety of symptoms ranging from irritating to life-altering. To dive deeper into mast cell activation syndrome and the strange constellation of symptoms it can cause, check out the following articles:
- Mast Cell Activation Syndrome: Here’s What You Need to Know When Histamine Goes Haywire
- The Surprising Link Between Ehlers-Danlos Syndromes & Mast Cell Activation Syndrome
- Mast Cell Activation Syndrome: How It’s Diagnosed and 2 Exciting New Treatments
- Hidden Infections and Mast Cell Activation Syndrome: What You Need to Know
- Environmental Sensitivities and MCAS: A Look at Their Fascinating Link
- #78: Dr. Jill Interviews Beth O’Hara on Mold and MCAS
So, how can we address chronically activated TLRs and the intense, exaggerated response they trigger in mast cell activation syndrome?
9 Treatments for Mast Cell Activation Syndrome
While there is no cure for MCAS, that certainly doesn't mean you're simply at the mercy of your misbehaving mast cells. There are a number of tools you can put into place that can work in conjunction to minimize or even eradicate symptoms and help restore balance to your immune system.
Because each person grappling with MCAS is unique, there is no one-size-fits-all treatment strategy. Rather, managing MCAS requires a trial-and-error approach – experimenting with different treatments and lifestyle tweaks to see what works best for you. So if you’re trying to find relief from MCAS symptoms, here’s what I recommend:
1. Eat a Low-Histamine Diet
Histamine is one of the primary pro-inflammatory mediators released when mast cells degranulate. So getting your histamine levels under control is a top priority. One way to do this is by following a “low-histamine diet” – an elimination diet that aims to minimize the amount of histamine you ingest from foods and beverages.
I dive deeper into histamine-containing foods in my article, Mast Cell Activation Syndrome (MCAS): When Histamine Goes Haywire. For more detailed lists, I recommend The Histamine and Tyramine Restricted Diet by Dr. Janice Joneja or the Food Compatibility List from the Swiss Interest Group for Histamine Intolerance.
While reducing high-histamine foods can be helpful, the best way to truly identify and track which foods may be a trigger, is to keep a daily log of what you’re eating and drinking and the severity of your symptoms. This will help you identify any patterns and more easily recognize foods that may be contributing to your symptoms. As someone who’s had to work through my own personal food sensitivities, I promise taking the time to get to the bottom of this is worth it.
2. Use a DAO Enzyme Supplement
Diamine oxidase (DAO) is the main enzyme responsible for degrading histamine. However, if you’re not producing enough of this crucial enzyme, histamine can begin to accumulate and run amok – triggering many of the symptoms associated with MCAS.
That’s where DAO supplements come in. DAO supplements increase the DAO levels in the digestive tract – reducing the level of histamine entering the bloodstream and floating around in your body which can provide some relief from the symptoms associated with histamine overload. For more information on the mighty DAO enzyme, read my article, Boost Your DAO Levels to Fight Histamine.
There are a number of DAO supplements available over the counter, but be careful – ordering from Amazon may be convenient, but it’s also where fake and/or poor-quality supplements run galore. The DAO supplement I approve of and recommend is Histamine Blocker – a unique patented formula with 20,000 Histamine Degrading Units (HDUs) per serving to replenish and restore your DAO levels.
3. Incorporate Antihistamines and Mast Cell Stabilizers
While DAO supplements are excellent for reducing the amount of histamine absorbed from the food you ingest, these mighty supplements are unable to enter your bloodstream to reduce the amount of histamine produced within your body. This means that excess histamine produced by your own cells needs to be addressed by other methods. Which is where natural antihistamines and mast cell stabilizers can be useful:
Antihistamines:
These compounds bind to histamine receptors – essentially blocking histamine from binding to receptors and triggering symptoms. You’ve likely heard of the common over-the-counter antihistamine Benadryl which can be great for immediate relief but can also cause you to build tolerance and require more and more to get the same relief. Some better options to focus on are natural sources of antihistamines like:
- Vitamin C
- Stinging nettle
- Butterbur
- Bromelain
- Local raw honey
- Probiotics
- Astragalus
These natural antihistamines can help soothe symptoms and naturally reduce histamine levels.
Mast Cell Stabilizers:
Mast cell stabilizers prevent degranulation and stabilize your mast cells. A few well-known, natural compounds that exhibit mast cell stabilizing activities include:
- Quercetin
- Resveratrol
- Luteolin
- Curcumin
But the truth is, having to take a conglomeration of antihistamines and mast cell stabilizers (on top of potential DAO supplements) can get expensive and overwhelming. To get relief without the expense or headache, I recommend Hist Assist, a blend of flavonoids, antioxidants, enzymes, and botanicals that can help block histamine and stabilize your mast cells – providing you with comprehensive support for relief from MCAS symptoms.
4. Identify Sources of Toxins
There is no single factor that has been shown as the definitive cause of MCAS. However, various microbes can disrupt the immune system and cause mast cells to go haywire. Two major environmental triggers of MCAS include mold and an elevated overall toxic burden – which you can read about here:
- Mold is a Major Trigger of Mast Cell Activation Syndrome
- Immunotoxicity: Are Environmental Toxins Throwing Your Immune System Off-Kilter?
If you’re struggling with MCAS, it’s absolutely essential to reduce the body’s microbial and toxic burden. This typically requires a thorough assessment of your environment as well as making some adjustments to your lifestyle to minimize exposure to mold and other environmental toxins. Be sure to check out the above recommended articles to learn more.
5. Increase Exercise & Sweating
Once you minimize the inflow of toxins or triggers, you can take steps to mobilize toxins and enhance toxic outflow. One of the best ways to “distress” the toxins in your body is to get the blood pumping through exercise and sweating.
While it may not remove all pollutants, there are studies that show sweating is an effective and safe method for removal of toxic compounds that can accumulate within your body such as:15,16,17
- Arsenic, cadmium, lead, and mercury
- Phthalates
- Bisphenol A (BPA)
To work up a sweat and boost your detoxification, aim for at least 30 minutes of moderate exercise every day or incorporate regular sauna sessions.
6. Promote Good Gut Health
The health of your gut and the composition of your gut microbiome play an intricate role in your immune system thanks to a channel known as the gut-immune axis. This bidirectional communication network allows your gut to directly communicate with and influence your immune system and vice versa. Pair that with the fact that a large percentage of your immune cells are housed within your digestive tract in what’s known as gut-associated lymphoid tissue and it’s easy to see how poor gut health can lead to an off-kilter immune system.
So ensuring your gut is happy, healthy, and balanced is a key piece of the puzzle when it comes to calming hyperactive mast cells. Some ways to support the health of your gut include:
- Reintroducing a variety of beneficial gut microbes to support a diverse and flourishing microbiome. I recommend pairing Probiotic Daily Essentials with my Spore Probiotic Plus IgG.
- Give your gut the nutrients it needs to build a strong gut barrier so it can keep pathogens, toxins, and wastes sealed up tight in your intestines where they can be properly excreted. To give your gut a concentrated dose of gut barrier-boosting nutrients I recommend Gut Shield, Gut Immune, and Collagen Boost.
- Eat a well-rounded, healthy diet full of microbiome-supporting foods. Eating plenty of quality protein and healthy fats paired with slow-digesting carbs will help fuel beneficial bacteria while starving out harmful bacteria. It's also helpful to opt for organic foods whenever possible to avoid ingesting microbiome-disrupting pesticides and chemicals.
If you’re looking to soothe your mast cells and restore calm to your immune system, you simply can’t afford to ignore your gut health.
7. Get Enough Sleep
In a world that idolizes intense productivity and doing “all the things,” it’s tempting to sacrifice sleep. But doing so can upset the circadian clock of mast cells. Yes, you read that right, mast cells do indeed have a circadian rhythm – meaning your mast cells are more reactive during certain times of the day and less reactive during others.
This is why many people with allergies report experiencing “morning attacks” or sleep disruptions. Studies have found that serum mast cell histamine levels were lower in the afternoon and highest at night. So if your circadian rhythm gets thrown off with irregular sleep patterns or poor sleep quality, mast cells can lose their own rhythmicity. This circadian rhythm disruption can cause mediator release to become uniform throughout the day and contribute to your mast cells' overzealous response.18,19
So cultivating a good, regular sleep schedule and sticking to it can help keep your mast cells in check.
8. Reduce Stress
Chronic stress can kick your immune system into overdrive and allow troublemaking microbes to flourish. Stress can also contribute to mast cell degranulation, which causes them to release mediators like histamine.20 It only makes sense, then, for patients with MCAS to minimize stress as much as possible.
Because triggers for MCAS can be wide-ranging and unique to each individual, it can be helpful to keep a daily journal of any emotions, events, or activities that triggers your symptoms. And remember, the devil is in the details – if you suspect that you are suffering from MCAS, it’s crucial that you create a detailed list of triggers and symptoms to create an effective strategy to minimize your symptoms.
Stress is a major problem for most of us, and many of us don’t have a healthy way of managing it. But it doesn’t have to be difficult, expensive, or time-consuming. If you need some help finding ways to manage and reduce stress, check out my article, Be Happier & Less Anxious with 7 Minutes a Day.
9. Low-Dose Naltrexone – The Surprising New Comer
Even with all the treatment methods outlined above, some people may continue to struggle with MCAS symptoms. Recent research shows that a novel use of a medication known as low-dose naltrexone (LDN) may be able to help. At first glance, LDN may seem like a strange drug of choice for the treatment of MCAS – especially considering naltrexone is a drug that was approved to help prevent narcotics and alcoholics from relapsing.
As an opiate antagonist, naltrexone competes with opioid drugs for real estate on opiate and endorphin receptors. This helps patients feel less “high” from opioids or alcohol and reduces cravings. So how on earth does blocking opiate/endorphin receptors help MCAS patients?
You see, low doses of naltrexone essentially trick your body into producing more endorphins – the “feel good” chemical that is released during exercise. The influx of these natural endorphins stimulates your immune system by binding to regulatory T cells, which promotes an increase in T-lymphocytes. This upregulation of T-lymphocytes reduces cytokine and antibody production, restoring a more normal balance while pumping the brakes on overall inflammation.
To dive deeper into the exact details of how low-dose naltrexone exerts this impressive immune-regulating and inflammation soothing effects, head over and read my article, Low Dose Naltrexone: The New Treatment You’ve Never Heard Of…
So, Can Low-Dose Naltrexone Treat Mast Cell Activation Syndrome?
Is low-dose naltrexone the inexpensive, safe, and effective therapy for MCAS we’ve been looking for all along? Of course, we’ll need more evidence, but based on the evidence so far, it appears that LDN has the potential to treat a wide variety of conditions – MCAS included.
If you’ve been diagnosed with MCAS or are concerned you may be experiencing symptoms associated with hypersensitive mast cells, I cannot overemphasize the importance of working with an experienced Integrative and Functional Medicine Practitioner. They can help you pinpoint the root of your symptoms, identify contributing triggers, and help you come up with a comprehensive plan to not only manage symptoms, but heal any imbalances at the source.
Are You Concerned About Mast Cell Activation Syndrome?
Living with a chronic illness like MCAS can feel discouraging, frightening, and isolating. But there are things you can control. With the right strategies and combination of medications, supplements, and lifestyle tweaks, you can absolutely stabilize mast cells and bring balance to your immune system. Be sure to not only explore the many resources linked throughout this article but also browse my blog and YouTube channel – they’re chock full of resources to help you create the healing and vibrant well-being you deserve.
If you’re grappling with MCAS or any other complex illness or if you’re searching for answers to the barrage of unexplained symptoms you’re experiencing, the future can seem bleak at times. But please know that you are not alone and there is hope for healing. If you’re in a dark or challenging place right now, I’ve been there too – and I want to help you find your way back to health, happiness, and hope.
Dr. Jill Health® – MCAS Bundle MCAS treatment involves identifying and avoiding triggers that exacerbate symptoms and here is what I recommend to help support and stabilize mast cells to manage symptoms.
In my upcoming book Unexpected: Finding Resilience Through Functional Medicine, Science, and Faith, I detail my own personal journey with health obstacles, heartbreak, and hard-learned life lessons. I poured my heart into this book with the hopes of providing not only a practical science-based guide to healing your body inside and out, but also provide a source of connection, hope, and inspiration. Because if I can heal and overcome the countless curveballs life has thrown my way, I know that a beautiful life full of health, happiness, love, and resilience is more than possible for you.
You are a powerful creator and my hope is that this book helps remind you of that and plays a part in inspiring you to continue overcoming and continue creating the extraordinary life you dream of. Click here to learn more about my upcoming book and get your exclusive bonuses when you order today!
Resources:
- Principles of innate and adaptive immunity – Immunobiology – NCBI Bookshelf (nih.gov)
- Immune response: MedlinePlus Medical Encyclopedia
- Definition of adaptive immunity – NCI Dictionary of Cancer Terms – NCI
- The Role of Mast Cells in the Defence against Pathogens – PMC (nih.gov)
- Mast Cell: A Multi-Functional Master Cell – PMC (nih.gov)
- Defective LPS signaling in C3H/HeJ and C57BL/10ScCr mice: mutations in Tlr4 gene – PubMed (nih.gov)
- Natural functions of lipopeptides from Bacillus and Pseudomonas: more than surfactants and antibiotics | FEMS Microbiology Reviews | Oxford Academic (oup.com)
- Role of lipoteichoic acid in infection and inflammation – PubMed (nih.gov)
- Bacteral flagellin—a potent immunomodulatory agent | Experimental & Molecular Medicine (nature.com)
- The Role of Mast Cells in the Defence against Pathogens (nih.gov)
- Toll-like Receptors Activate Innate and Adaptive Immunity by using Dendritic Cell-Intrinsic and -Extrinsic Mechanisms: Immunity
- Innate Immunity and its Regulation by Mast Cells (nih.gov)
- Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options – PMC (nih.gov)
- Mast Cell Activation Syndrome: Proposed Diagnostic Criteria – PMC (nih.gov)
- Human excretion of bisphenol A: blood, urine, and sweat (BUS) study – PubMed (nih.gov)
- Human elimination of phthalate compounds: blood, urine, and sweat (BUS) study – PubMed (nih.gov)
- Arsenic, cadmium, lead, and mercury in sweat: a systematic review – PubMed (nih.gov)
- The Circadian Clock Drives Mast Cell Functions in Allergic Reactions (nih.gov)
- Analysis of plasma histamine levels in patients with mast cell disorders – PubMed (nih.gov)
- Stress, corticotropin-releasing hormone, glucocorticoids, and the immune/inflammatory response: acute and chronic effects – PubMed (nih.gov)
139 Comments
Thanks so much for this! Lyme and mold brought out my mcas. I’ve been doing a ton but this article is great. Any suggestions for the eyes? My eyes are my one major symptom left with all the lyme/mold/candida/mcas treatment. They are always red with pterygium. I do castor oil now and all my supps to stabalize my mast cells. Still irritated but with no pain.
Becky perhaps you could try Cromolyn eye drops? They’re a mast cell stabilizer for the eyes.
Ketitofen eye drops helped. For mast I’ve been trying cromolyn sodium Pepcid and Allegra, with diet changes. Still no major improvement yet and Zafirlukast… Btw, Dr. Jill, one question please. if I have to have a procedure with contrast, will steroids be enough to stop the de granulation ? I have to do a cerebral angiogram and am concerned. I had a ct angio in June w contrast and seem much more reactive since. Thank you for any suggestions. I appreciate all the wonderful information you share.
My mcas was brought on as part of my cancer treatment side effects. It seems like it is swinging wildly at the moment and I’m tip toeing not to upset and cause a flair. Currently I’m using xhance, cromolyn (to be nebulized and also added to my daily water) and a floair puffer.
I’m scared and not sure how to proceed with this new disorder.
Dear Jill,
76yrs old, with allergic history since teens, increasing severity last 2-3 yrs, pollens, scents dyes/ smells, hot/cold, humidity, fatigue, ‘allergic to e’thing!’
Foods, many medications, additives, even guar, zxanthum, etc ect! After study & reading deeply, I am convinced there is mast cell at play. How can I find a diagnosis, most dr’s not interested!
Have major op shortly, helpful with anaesthesia to be confirmed, & supported appropiatley! Thanks,Marj Drewitt, Australia.
You can reach out to this society to obtain a list of physicians familiar with this diagnosis And another place would be looking for a mast cell activation support group on Facebook for your region of Australia, I have found this even more helpful! Good luck! https://mastocytosis.org.au/
Hi Jill. I have been ill for years, (I’m 31) and was recently diagnosed with CIRS, MCAS, and I have chemical sensitivities. I have tried everything but have recently realized, mold has been at the root cause of my problem as I have the “dreaded” HLA gene. I have been following all of you articles for some time and I want to say it’s such a relief to find all of this information in one place. I knew it was a matter of time that functional medicine mapped out the pathways. Several things that hay help you. My mast cell is activated from many stresors, but the biggest is mold. As you say, it is directly correlated with mold exposure. Another thing that sends my mast cells awry, is using too many mycotoxin binders such as csm and charcoal. One of the biggest things in treatment to grasp, is that ultra low doses of binders flair my mast cells. I think this is an important phenomena do note. In addition, I have been on LDN for a month taking 1.5 mg and working my way up to 3mg. I would have to say, other than xolair (which I couldn’t tolerate after 3 months) LDN has been the most impressive. It can cause insomnia however, so I have had better success taking in morning but based on studies, seems lke 9pm is optimal for blocking receptors.
I love your information! You are helping more people than you think.
Thank you, Jim! Yes, it is very important to start binders slowly and work up with MCAS. Thank you for bringing awareness to the sensitivity that MCAS patients experience…
My mcas was brought on as part of my cancer treatment side effects. It seems like it is swinging wildly at the moment and I’m tip toeing not to upset and cause a flair. Currently I’m using xhance, cromolyn (to be nebulized and also added to my daily water) and a floair puffer.
I’m scared and not sure how to proceed with this new disorder.
I note the use of low dose naltrexon for obesity, which I now understand to be an inflammatory disorder, a study in mice showed mast cell stabilisation reversed diet related obesity and diabeties. Thus I wonder if Mast cell stabilisation is part of how naltrexone works, along with reducing craving of course, to reduce weight.
Low dose naltrexone can decrease inflammatory cytokine production which may aid in improving mood and weight loss
I tried LDN also. 1.5 working up to 4.5. The first 3 weeks I only slept 2 hours each night and that was in 1 to 4 minute increments. Every time I would drift, I would wake up! I thought it was supposed to help me sleep so I’m glad to see your thought about insomnia related to LDN. Also, it changed my nerve pain from sharp burning to dried out and sticky. Not sure which feels better! LDN was my “last resort” — I’ve tried most of the RX, supplements, and OTC, diet, etc.
Hi Susan, Unfortunately not everyone tolerates LDN but that doesn’t mean that other options will not help you.
warmly
Dr. Jill
I have MCAD that developed after going through five months of treatment for a bacteria from lime disease. And I am suffering a great deal in pain all over my body with severe two and three months at one time elevated high blood pressure and then crashing high blood pressure, cannot be then warm water cannot rob my scan cannot smell any kind of sense or perfumes or deodorants am allergic to almo I have MCAD that developed after going through five months of treatment for a bacteria from Lyme disease. I am suffering a great deal in pain all over my body with severe two and three months at one time elevated high blood pressure and then crashing high blood pressure, cannot be then warm water cannot rub my skin cannot smell any kind of sense or perfumes or deodorants I’m allergic to medicines, supplements, vitamin C, histamine blocker, it’s affecting my eyes, my face has blotches on it the size of quarters and nickels my face burns all the time. I live in Central Florida and I desperately need help and cannot come to Colorado. Can you please please send me the name of somebody who can treat me no one in the area knows what to do and it’s been going on for 3 years! Kathyw48@gmail.com
Hi Susan
LDN does not work for everyone but there are many other options to treat MCAS
warmly
Dr Jill
Dr Jill
Do you do patient video appointments?
Or can you recommend some one closer?
Hi Kelly
Dr. Lawence Afrin and Dr. Theoharides are excellent with MCAS
Hi Dr. Jill,
I am a Physician (Pediatric Oncology/Hematology) and have developed fungal illness that resulted in 2 large fungal balls in my maxillary sinus that were surgically removed.
I am on many good supplements, have had my home remediated by professionals and lavage my sinuses twice a day with Citridrops and buffered saline in distilled water. I am still symptomatic but am improved.
The odd thing is that for the past 9 months on CBCs every three months, I have had Zero eosinophils. This is confirmed by microscopic exam of the blood smear by Pathology.
I have never seen in my practice any patient with zero eosinophils and none of my colleagues have either. Do you have any experience with this and what causes it and what it indicates?
Thank you.
Deborah L Carter MD
Thanks for sharing Dr. Carter… Ideologies might include Cushings, steroids, immune suppression (common with aspergillosis) or systemic infection.
The company may have remediated the mold but have all the mycotoxins been removed. Ie remove/replace carpet, drapes, upholstery, hvac system. The long term exposure to multiple mycotoxins can deplete and suppress one’s immune system, energy ATP production, etc.
Dr. Jill
I am so happy to get this information from you! I think you are the answer to a million prayers and am certain God is leading me. I was diagnosed with MCAS in March of 2019 (one month before turning 60). I have had gastrointestinal issues my entire life (IBS diagnosis at 22) and after a very stressful year was diagnosed with lymphocytic microscopic colitis in March 2018. I am passionate about good health and so I eat extremely clean (scrutinizing even more since colitis diagnosis) and exercise regularly.
I received the MCAS diagnosis from Dr. Afrin who really wanted me to try the H1 and H2 blockers one by one. I am not ready to try those yet. I’ve read the entire LDN book and many publications etc (I am a retired dentist and biochemistry major so have some medical knowledge). After all of my research I decided that I had nothing to lose by trying LDN and asked my local gastroenterologist who agreed to my request to try LDN.
On April 5th I started taking 0.5mg since I am very sensitive to medication and am planning on increasing only by 0.5 each month. I have read many of Dr.Weinstock’s and Dr. Theoharides publications as well as yours. I had the great pleasure of getting to hear Dr. Theoharides in Seattle at The Forum for Integrative Medicine. I currently am taking several supplements but no other drugs besides the LDN. I really believe that Dr. Theoharides NeuroProtek product is helping me (only started in October). Also I take 2000mg of Vitamin C with dihydroquercetin, C3 curcumin, and 4000 to 6000 IU of Vitamin D3. I’ve read that these are all good to stabilize mast cells and reduce inflammation and I believe they do help.
I am counting the days until I get to meet you in person. My husband and I are fortunate enough to be coming to the Swiss mountain clinic during your first week that you are hosting. I have been stalking your website and instagram and though I haven’t met you yet I can see the genuine loving and compassionate person that you are. I have been sharing your information with so many others and in particular my own family. Our youngest son, Trey is graduating from a masters of Pharmacology program in a few weeks and will begin LSU medical school in July. If he is fortunate enough to become even half the doctor that you are he will be very blessed. You are truly changing this world for more people than you know! I have learned so much through my own health journey but the more I keep learning the more I realize how much I do not know. I will keep in touch and let you know how my trial with LDN goes. I am feeling super hopeful. Another thing I am trying is red light therapy, which has been shown to reduce inflammation in some instances.
Best to you and so grateful for your wealth of information!
Peggy
Thanks for sharing your story, Peggy! Please do keep us posted on how the treatment goes… I love red light therapy! Use my Sauna Space every day!
Is there a difference between red light therapy and infrared sauna? Are they interchangeable?
yes, there is a difference… near infrared better for collagen production and far infrared better for detoxification.
Hi Peggy, what is the LDN outcome?
Thank you for the wonderful post, as always. I have severe MCAS, among many other completely debilitating conditions. I’ve been on 4.5mg LDN for 5 years and it has and zero affect on the MCAS, or anything else, unfortunately. Glad to know it can help some. Since you don’t work with new patients anymore, do you have anyone who you’d recommend for someone who is 100% bedridden and in critical shape?
Many thanks for your wonderful work!
Dr Wilms and Schaffner at Immanence Health in Seattle was helpful in my mold and mcas and lyme if you are still looking.
Hi Jill, I tried using LDN but had headaches every day and so much of my hair fell out that I gave up on it.
LDN is NOT appropriate for everyone…
Hi, I Have Lyme, Bartonella and other co infecfions as well as MCAS. My MCAS was severe and was treated by LLMD with H1 and H2 antihistamines, DAO and Cromolyn Sodium and diet. At one point I only had 16 safe foods. Now that I’m far along in treatment and in remission for Lyme, Babesia and Mycoplasma, they started me on LDN while I’m finishing Bartonella treatment. I’ve noticed the most improvement during Bart treatment and the introduction of LDN. In fact, I am off low histamine diet, off H1 H2 antihistamines and Cromolyn Sodium. I still use DAO supplement. I still have a couple food sensitivies that aren’t histamine foods but am exploring Dr Steven Gundry’s plant paradox notion. I’m hoping to get much more but improvement when I heal from my long Lyme treatment.
How did you get into remission from Lyme? I have Lyme and MCAS but Bart is my biggest problem I think and it makes the MCAS just go insane. My “no” foods list is incredibly long and I have to show the waiter a huge allergy list every time I go out, it’s rather embarrassing.
Hi Deb how did you get tested for lyme?
I can’t find a Dr to help me I have 4 safe foods.
I just need help.
If you are in the US, Anylabtestnow.com has a reliable lyme test, no prescription needed. Its expensive, but that’s how I got my diagnosis, also check out global lyme alliance to find a local lyme practitioner. . .best
I went here. This successful Lyme treatment, hypothermia, began in Germany 25 years ago. It is now in the US and FDA approved. A doctor from Yale brought it to Florida.
I had Lyme, cured now, still dealing with MCAS, but symptoms were greatly reduced once the Lyme was annihilated. I was diagnosed with a bullseye and Dark Field Blood Test.
https://thelymespecialist.com/
Yes, I have MCAS, POTS, h-EDS and mycotoxin illness. I believe all were triggered by living in mold. I tried LDN recently to treat and it made me worse!!😩 My worst symptoms is pain and inflammation and it made my pain worse and it made me lose more foods that I once didn’t react to. My doctor thinks my mast cells reacted to it something about the shift in the immune system. Perhaps my body couldn’t handle it. I even started out at 0.5, and went down to 0.25mg, but after 2.5 months I had to quit. I still can’t get my mast cells stabilized now and I felt they were under control before LDN. I’m very frustrated to say the least. Hoping for more answers. Wish LDN would have helped. We are also trying to treat the mold with binders, but I keep reacting to everything we try. I hope I’m not a lost cause. 😢
yes, start slowly and continue trial with different anti-histamine and mast cell stabilizers and you should be able to find something that helps…
Hi Erica, how are you doing now? I also have MCAS, POTS, h-EDS. I found LDN, ant-histamines and cromolyn sodium to have no effect on me whatsoever and have seen no improvement in my symptoms with them. Have you found anything that has worked? I wish you well!
I have been on LDN on and off for about 5 years. I believe it has helped me in may ways. I was diagnosed with MCAS a year ago, and have been dealing with CIRS, EDS, Lipidema, Lyme and Mold illness as well. Presently dealing with Afib and high B.P. which I feel is related to the EDS and CIRS. So with all that I have been feeling pretty well overall which surprises the Docs when they see my reading from blood work, et.c. In other words, they’re amazed I feel as good as I do!
I do want to comment on your website. The testimonials that you have on a rotation (on the right side) are VERY distracting when trying to read your blog. I have trouble focusing/concentrating at times and that constant motion makes it so I can’t read the wonderful information you have provided. So, is there another place I can read your blog that doesn’t have motion on the side? Thanks for all you do!
Thanks for your feedback, Jenny! …since the testimonies are only a tiny bar on the right as you scroll down I will not likely change it but I do appreciate your feedback 😊
Hi, Jenny. A quick suggestion/question: Might it help to cover the column of changing testimonials with an appropriately sized piece of cardboard when on this site? This is pretty low-tech, but as someone who gets ocular migraines from certain types of light and changes in light, I’ve found that avoidance helps me, so maybe this would help with the distraction issue, too. Wishing you the best, Jan
Thank you for this article and others mentioning EDS and its complications! Through the diagnosis of my teenage daughter, my son and myself have also been diagnosed. Those affected by these health issues are very frequently misunderstood in the medical community leading to other unhelpful and harmful diagnosis’s. It is a very difficult road to navigate medically, especially from a wholistic viewpoint. Bringing this to light in the functional medicine arena is a exciting. The EDS/MCAS/POTS community can really benefit from this information. It provides more alternatives to the sometimes unsuccessful treatment protocols. Thank you, thank you for bridging this gap!
As soon as I notice symptoms, I scan my “system” for any emotional blocks or resistance or any “resentment” or “fear.”
Then I grab the quercetin and Vitamin C. My body responds well to this as long as I stay alert. I use adaptogens as well.
For example, right now, after a great green and raw veggie salad with delicious roasted chicken, I sense the tingle in my face and the veins in my hands (a symptom I just learned about) which pop out when I’m experiencing a reaction.
Now I’m headed to the supplement drawer for Quercetin, and Vit C including slow release Vit C. I suspect that will help. And no more food till my puffy red face recedes (if it shows up in force). The first time the face rash showed I was a bit panicked! I have not tried DAO. A nutritionist diagnosed me a few years ago but my first real outbreak happened 2- 3 years ago at Christmas. The most effective first line of help seems to be Quercetin and Vitamin C and stopping the high histimine foods. And I always need to be aware of the emotional situation presence too.
Which vic c is best for mcas? I have read to use a non-citrus one, but I don’t know which one. Can you help me out?
Hi Gina – my favorite is Buffered C caps here
warmly
Dr Jill
Hi Dr. Jill,
Thanks for your many posts on MCAS. Have you had any luck with Dr. Theoharides’s Neuroprotek formula? I’m currently having some success with H1 antagonists for my MCAS issues (while working on underlying CIRS and Lyme). I would prefer not to stay on OTC antihistamines long term. Does Neuroprotek work as a substitute? Or can it partially substitute for H1 blockers?
Thanks again for all the great info!
Dr Jill I have been given Ldn by environmental doctor buscher in Redmond Washington but I haven’t used it yet I’m nervous too.. He also put me on compounded t3 which I have been using.. I live in Kuna idaho..im very toxic. I have mast cell activation disorder and chemical and electrical sensitivity bad and I have mold toxicity and candida.. I’m living where they cropdusting.. Well they cropdust all over Idaho.. I’m very toxic and I’ll Dr Jill please help me I don’t know what to take for mold toxicity just been taking activated charcoal.. I’m so toxic it gave me shingles on back of my leg and in my system.. I taste a metallic taste always and have no teeth left.. I’m being poisoned by something andante keep up with toxins and reaction. I have been taking allergdhq for histamine and milk thistle and pb8 probiotics and sometimes turmeric and magnesium at night.. I keep freaking out cause I’m so toxic and have yeast and rashes.. I have been taking clonzapam every three days it seems to calm things a bit but dontlast and I heard they are bad for you.. Can you please help me I say momma randomly outloud and not on purpose.. Mucus lining all seems to go together like the taste in my mouth is causing yeast and symptoms in vaginal area nose is dry inside and I have been having a weird symptom in left eye blurry and like something is pulling in outer part of eyeball on left eye.. It all seems to go with taste which I believe is toxins.. Heat in face an brain.. Please help me.. I don’t know what to take or do anymore..love candy.. Please email me at free2beme1961@yahoo.com
Hi. I took Neuroprotek for 3 months and did not notice any symptom relief. It is expensive too but not a substitute for antihistamines. My doctor implemented prescriptions and supplements over the course of a year. I cannot tolerate any probiotic after trying several formulations! I have great success with famotidine (Pepcid) taken at bedtime, and with ketotifen (Raditor eye drops). Then we added LDN, got more improvement and last month added Budenoside taken upon waking. Those meds plus quercitin/bromelain/stinging nettle and VIt C have given me my life back!
Can I ask who your doctor is for the MCAS? Thank you.
Dear J, Sorry to hear that your condition is debilitating. If you will send me a message, then we can compare notes and see if there are any physicians that I know of who might work for you. My good friend is for 20+ years also unfortunately among the worst of the worst of the worst, and she is the one that lived.
Don
megghegg@yahoo.com
Dr. Jill,
Thank you for all of the helpful information on MCAS. I had a tick bite in August 2019, TDAP vaccination in October 2019. Late November I had a sudden onset of swollen lymph nodes and rash. My PCP’s first thought was histamine reaction. These symptoms resolved in 10 weeks, followed by a sudden onset of gastroparesis and severe reflux (had to get IV fluids often for 7 weeks and no prior history). These symptoms are very slowly getting a little better, but the rashes have come back. I have a mold test scheduled for my house. Comprehensive stool test is good. Lyme’s test was negative. Heavy metals test was high in platinum and have treated that. No fungus.
What other tick borne illnesses should i be tested for to see if that is the source? I am on omeprazole (unfortunately) and an H2 blocker, getting ready to add an H1 blocker. should I go ahead and transition off of the omeprazole? the reflux is still significant, but wonder if the omeprazole is aggravating it.
I am eating about 10 foods, and have difficulty adding new ones, even low histamine foods.
Thank you,
Laura
Hi Laura
You may want to get a comprehensive panel from labs like IgeneX or Vibrant Lyme or Armin labs
warmly
dr Jill
Thank you.
I am on the omeprazole and quercitin, and added the zantac about a month ago and my reflux just seems to get worse. I have a telephone appointment scheduled with one of the dietitians that you work with to help figure out a plan to add foods so that my weight loss stops. Wondering what the logical next step would be. Should I add in and H1 blocker? or try to back off of the zantac or omeprazole? Or try something like the cromolin. Also want to have the HLA DR antibody tested that you mentioned in one of your podcast. I appreciate your knowledge so much.
Try apple cider vinegar capsules not gummies for heartburn.
Dr. Jill,
Thank you so much for all the information you have compiled on your website regarding MCAS, et al! What a blessing to have this helpful resource! I have been recently diagnosed with MCAS and have started oral Ketotifen (0.5mg/2x daily). I have taken LDN in the past for CFS and this article brought me to the following question, would you utilize LDN and Ketotifen simultaneously? I would like to bring your articles to the attention of my practitioner, who is very open to alternative and integrative therapies. Thank you again for sharing your research, knowledge and understanding! May God continue to bless you and your work!
My doctor just put me on LDN two weeks ago for continual reactions and already, I’m noticing a significant decrease in reactions, better sleep, and just in general, I’m feeling better–I think the massive inflammation in my body is starting to drop. I’m at 1 mg now and working my way up to 4.5 mg. It’s incredible…finally, a light in the tunnel.
Hi Dr. Jill,
Great article above! Thank you for all your efforts to help us patients find answers to the perplex queries of our health.
I am hopeful that in your future blogs, Piecemeal degranulation of Mast Cells would be a topic as I hope to understand if this explains why I feel a lingering feeling of itch after a random small exposure to a trigger.. Taking antihistamines at this point just doesn’t relieve me. Rather, what relieves me of this feeling is to ingest a bigger amount of any trigger, where I feel a boost of the allergic reaction, and this is where taking antihistamines at this point effectively relieves me. This is a very weird and tiresome approach as I don’t want to purposely ingest a trigger, but for now, I don’t have any other way to relieve me..
Very Hopeful,
Ruth
Hi Dr. Jill,
Great article above! Thank you for all your efforts to help us patients find answers to the perplex queries of our health.
I am hopeful that in your future blogs, Piecemeal degranulation of Mast Cells would be a topic as I hope to understand if this explains why I feel a lingering feeling of itch after a random small exposure to a trigger.. Taking antihistamines at this point just doesn’t relieve me. Rather, what relieves me of this feeling is to ingest a bigger amount of any trigger, where I feel a boost of the allergic reaction, and this is where taking antihistamines at this point effectively relieves me. This is a very weird and tiresome approach as I don’t want to purposely ingest a trigger, but for now, I don’t have any other way to relieve me..
Here’s the link to the NCBI article re: piecemeal Degranulation.
https://www.ncbi.nlm.nih.gov/labs/pubmed/15970657-piecemeal-degranulation-of-basophils-and-mast-cells-is-effected-by-vesicular-transport-of-stored-secretory-granule-contents/
Thank you!
Very Hopeful,
Ruth
Great information! I am interested in using the HistAssist for my MCAS symptoms. I have not been able to tolerate using OTC antihistamines (Zyrtec, Claritin, etc) so hoping this might help. I see the formula uses Pineapple. From my understanding, pineapple is a high histamine food source. How does this affect effectively using the HistAssist when one with MCAS needs to avoid high histamine foods and sources?
Dr. Jill,
Thank you so much for this informative article. I have histamine intolerance and knew about some of this, but not all of what you have here. But I have a question: can these things also help prople with systemic mastocytosis?
Hi Christina
yes, these tips may also help somewhat with systemic mastocytosis…
warmly
Dr. Jill
I stopped benzodiazepines 5 years ago. And after that i have developed all the symptomes of MCAS. I live om Norway. No one understand me. I ha d ro ho back om benzodiazepines after 5 years bedridden. Now they want me off again. It’s the only thing making me anke to eat everything i want get jo from bed . It’s possible for me to get out in the sun. Not so much anxiety, stomac pain is away, musckles relaxes and do much more.
All my symptoms started as soon as I was withdrawn from benzos too. Benzos keep a clamp on the mast cells so when they are removed they go haywire and MCAS can develop. Sorry you’re going through this.
Thank you so much for this article. I was diagnosed about 15 years ago with POTS after a case of mononucleosis. Since then I have struggled over the years with various health issues including daily headaches, stomach issues, “allergy” issues, etc. It wasn’t until a few weeks ago at an allergist appointment (where I went through my first allergy testing), that the allergist talked to me about the possibility of MCAS. It doesn’t seem like it would be mold related since my POTS came from mono, but would some of the same treatments work? For what it is worth, I only had 2 allergic reactions show up and they were VERY small. With my bronchitis episodes every spring, he is thinking MCAS might be the answer. Right now he has me trying Allegra during the day, Zyrtec & Singular at night, plus 2 nasal sprays and Zantac. It has seemed to help a lot so far. I would like to treat it more naturally, but the relief has been nice!!
I wonder if you have any experience using LDI (low dose immunotherapy) for patients whose MCAS was triggered by Bacterial LPS from dental cavitations. It seems to me that even after the cavitations are dealt with, the immune system can still be trigger happy and allow the mast cells to continue their rampage despite the lack of LPS.
Yes, LDI may be helpful
Hi Dr Jill,
I have had asthma and severe allergies since birth. Many tests were done for cystic fibrosis, etc and tonsils adenoids removed at 18 months as they could not figure out why I was sick all the time. Conventional treatments were not working. My symptoms although the sort of fit with asthma/allergies were atypical. I spent most of my childhood in hospital, in oxygen tents and on treatments. I had many allergy tests of course confirming environmental and animal allergies. My first anaphylactic reaction happened the end of aug’89, I was 14. I was intubated. I was then put on Intal (Cromolyn). I continued anaphylactic reactions here and there. I was exposed to mold and was again intubated the end of aug’96, I was 21. I was then placed on Singulair, advair and carried an epipen. Many reactions later, particularly after 4 in 1 month, I went to a different allergist/immunologist at age 40, 4 years ago. My triggers were bay leaves, senekot, advil, Montreal steak spice, assorted subs, dairy queen ice cream, mushrooms, mold and other environmental items. He diagnosed with MCAS. I am taking Singulair, adviar, reactine 20mg daily as well as prevacid. My usual emergency kit is nebulizer with ventolin, benadryl and epi pen. My reactions start with diarrhea, nausea, then shortness of breath, nasal congestion and sneezing, itchy throat and ears and hives. I have also had a bout of reactive arthritis putting me on methotrexate, plaquinil, prednisone and something else I cant recall. Also bouts of iritis and scleritis. If I don’t get enough sleep I get a headache and suffer from bouts of fatigue and achy joints here and there, but I keep going. My daughter is 24, allergic to eggs and has had 1 minor reaction of hives, shortness of breath and diarrhea after eating movie theater popcorn. My son has allergies/asthma and rhinitis, constantly congested. So here is hoping they don’t become as bad as myself. My tryptase was normal, has not been tested within 2 hours of a reaction, no 24 hour urine and my bone marrow test was negative. I have increased RF, eosinophils, colonoscopy showed increased eosinophils, some other inflammatory markers increased. CBC has some abnormalities usually too related to allergies/immune system.
Any other suggestions would be greatly appreciated. Thank you in advance.
Hi Rondele
Another cause of elevated eosinophils is parasitic infections. I suggest testing and treatment if necessary.
warmly
Dr Jill
I was diagnosed with MCAS last year and treated it mostly with diet and antihistamines. We then found we had a mold exposure and cleaned that up; so I focused more on detoxing from the mold and less about the histamine because my symptoms got better.
2 months ago I got very sick again. I have been through it all trying to figure it out. Headaches, diarrhea, heart palpitations, really bad anxiety, intermittent insomnia, and the list goes on. Over the past 2 months i keep coming back to MCAS but I couldn’t for the life of me figure out why I would be having such a flare of symptoms. My diet hasn’t changed, no new environmental factors, etc. BUT today I realized that all of my symptoms started when I started Invisalign. And with Invisalign you change to new trays every 2 weeks and a day or two after each change of tray I would get hammered again with intense symptoms. The latest being swelling of my tongue and throat. I looked up allergic reactions to Invisalign and saw many people post and explain similar symptoms to mine and then I remembered that I had MCAS! Have you ever heard of such a thing? Could it be that the constant exposure to the plastic of Invisalign is causing this??
Hi Anne
Yes, the plastic may contain BPA and other chemicals and I have seen some patients have a local reaction, although not as severe as the one you are describing
warmly
Dr Jill
Hi I had a mild case of MCAS and after using Invisalign all my symptoms got worse I was having bad allergic reactions to the plastic in Invisalign after that I could no longer drink from a plastic bottle that would get swollen tongue and difficulties catching the breath. I then started getting allergic reactions to latex and metals. Horrible. I got some relief after using doxycycline for 3-4 weeks because my Lyme test was coming out positive together with a gluten and lactose diet and went into remission and eventually had a baby and during pregnancy I had no more symptoms as well when I was breast feeding. Right after breastfeeding my symptoms came back and worse. Maybe the hormones play a role in this? What I have noticed is that when the immune system / body is busy doing something my mast cell do not act. Like for example when I got hurt on a jetKi I felt amazing for 1 week and then symptoms came all back. When I feel I am getting a reaction which now happens as tingling in my feet hands lips with palpitations I try to distract my body by jumping and shaking my head so times it works some others it does not and my tongue gets swollen and I get difficulty in catching the second breath so I immediately get 1 -2 Benadryl. Also mold is a major trigger for me… I can maybe start again Doxy but not sure it so ok to get it lomg term it I’d actually also a mast cell regulator. Good luck to us
I was diagnosed in Boston with MCAS in 2015. I was so sick with attacks of tachycardia, near syncope, shortness of breath , severe abdominal bloating and bright red hot flushing over face,neck and chest. I thought I was dying. Went to numerous specialists for a year. It was the most miserable time of my life. I’m an ICU nurse and I had to go out on disability because the attacks interfered with me being able to care for patients. Once I got on the right meds for me, it took over 2 years to really feel better. I have so many triggers. I currently take Claritin 3 times a day, Zantac twice a day, singulair once a day, ketotifen 2 times a day (which I get from Canada drugs online). Vitamin C seems to help also. I tolerate aspirin so they have me on 81 mg twice a day although I know it can be a trigger for some. I have to avoid heat, sun, cold (I get cold urticaria really bad) and anything with preservatives in it. No alcohol whatsoever! That was a huge trigger when I first got sick. It’s been a long journey and I’ve had to change my ways a lot! I have to rest when I’m exhausted and avoid stress at all cost. I had a serious reaction today and that is why I was on google. We were in Walmart in computer section and I’m not sure why or what triggered the reaction, but it’s happened before in electronic section of stores. Had to take meds and felt some relief within 15 minutes. Anyone have that type of reaction with large stores or electronic section. Lol. I know it sounds strange.
not at all… EMF exposure may trigger worsening reactions in MCAS patients
Not so strange , i found out that electo magnetic fields release mast cells, I avoid the electronic section at all costs, as I am so ill if I go anywhere near it, I also have a problem with my own tv, husband has to watch tv in basement as I will get a headache if I even walk by. Mast cell issues are the worst.
I appreciate 9 methods you share. It is of great help to me in the treatment of my illness.
Hi Dr. Jill,
I have no idea if I have MCAS or not. I am uninsured, so it’s nearly impossible to see an allergist, etc. I developed slight asthma 4 winters ago, when I was 32. While sledding and climbing uphill, I became very winded and short of breath. I’ve always taken good care of myself, eat a very nutrient-dense diet, take quality supplements, etc, so this asthma dx was astonishing. I don’t know how an adult woman suddenly develops asthma. Now, it comes and goes. I’ll go 6 months or more without needing my inhaler, then I’ll have a month like this last one where I needed it every 2-3 days. I often wake up around 3:00 a.m. with severe congestion, heavy chest, and/or wheezing and am unable to get back to sleep until I’ve used my inhaler. Zyrtec helps, but I try to avoid it as much as possible. This past year has been the most stressful year of my life, and I’m just now beginning to get it back. But I keep coming across MCAS, and I don’t know how to go about getting tested. Can you point me to the type of labwork I would need? Does what I describe sound like MCAS or just histamine intolerance or neither? Many thanks! Lindsey
Hi Lindsey
There are many reasons someone can develop new onset asthma as an adult but I 100% agree with you that you should look at possible root causes. Poor HPA axis dysfunction, environmental toxins or allergens are among the many reasons this could occur
warmly
Dr Jill
Thanks, Dr. Jill for all your good work. It is so refreshing to see an MD interested in MCAS and also caring enough to have a Q&A component on their site. Regarding LDN, I was an early adopter to LDN, on it for almost ten years. It gave me wonderful relief for fibromyalgia, until I went GF. After 6 mo., I no longer needed the LDN. I have always had IBS and fibro, and food intolerances from birth. Food sensitivities including histamine intolerance, IBS and thyroid CA as well as ADHD run in the family. I am on a strict organic, low hist, unprocessed diet, but have been troubled my entire life with intolerance to all fruit and acids, incl. ascorbic, citric, malic, acetic, etc. I was shocked to hear recently that citric acid is developed from mold for I am intolerance of mold as well. Despite quercetin and a host of H1, H2 products, one bite of blueberry, pear, or even watermelon will send my body into a fit of fibro, flatulence, and constipation. Does this make sense in some way? Since Jan 2019 when I had a cardiac ablation for arrhythmias (that was unsuccessful), I have been plagued with MCAS, and still trying to recover. I shall never stop experimenting to manage this MCAS. But I wonder what I can do for the inability to eat fresh organic fruits and acids? Can you advise? Thank you in advance for your thoughtful remarks.
Hi Peg, it may be related to salicylates or oxalates …
Hi Dr. Carnahan : My daughter has mast cell activation disorder , we went to Cleveland clinic and John Hopkins with no results, we live in Dallas Texas and UT southwestern will not even reply by to us even though my daughter sat down with the director of immunology Dr. Khan and had a major reaction in his office in front of him and had to go to the Emergency room right away. He did not even visit her at the emergency room….. she is taking all the mast cell medications , Cromolyn, Ketotephen, H1, H2, antihistamine and many others medications to be able to somewhat function, she is divorced with two little boys . My daughter did not try LDN ,but we are looking into HBOT , Hyperbaric Oxygen Therapy. Do you know if that helps or not? Thank you
I have not seen HBOT used specifically for Mast cell disorders
I have been going through this for almost 3 years now-I am allergic to benedryl so that’s sucks – my question for you though is- the first you recommend for histamine- you say sweet potatoes are risk and beans of all sorts listed as good- on every other histamine list sweet potatoes are recommended and beans are not can you explain why sweet potatoes would be a risk? I am lacking in so many vitamins and am allergic to most everthing- I haven’t reintroduced sweet potatoes yet
Thank you for your time
Karon
I would give the sweet potatoes a try if you are limited on options…
Dr Jill,
I have been seeing a research doctor for 2 years who is an immunologist. I started Seeing her in Jan 2018. She did extensive immune testing at that time. I started LDN in March that year. When I saw her in May 2019, my immune studies showed much better balance and function. And I was able to forego sinus surgery late in 2018 after years of infections. I also attribute this in part to the LDN.
Well, I’m not able to take ANY of those supplements, and am down to eating one food, again. I’m doing a juice fast to try to do some detox. I cannot even take antihistimines without reaction. I guess it is God and I to figure it out. I will try to exercise more and try to balance my autonomic nervous system, avoid stress. That’s what I have to work with. That’s what I’ll go with. I had tried LDN, and it made me worse, 10 years ago. I find that many things that work for other people….even “Thought Field Therapy”, if done too much, it makes things worse. All I can do is baby steps. I’m sure that others, here, will have some of the same experiences. Thank you for the article. It was still enlightening….though a little depressing for me.
You may try DNRS by Anne Hopper or desensitization therapy with a trained therapist. I am sorry you are experiencing such sensitivity… it can be difficult to get out of the cycle of reactivity unless you try to retrain your limbic system. Best to you in healing 😊
I believe I have MCAS, however my allergist tested my typtase and it was negative. So, I don’t know if it’s just a Histimine Intolerance. I only get a rapid heart beat. It’s happened when I’ve eaten almond butter, a yogurt drink, avocado recently and blueberries. My throat feels like it will close when I eat beans. This has been happening gradually for the last 7 months. Prior to this, I ate everything with no issues. I only eat chicken, turkey and eggs along with lots of cooked greens and broccoli. I’m just eating apples right now. I tried Quercetin and DAO. Both made my heart rate increase with just a little. I’m seeing another ND this month. The last one I saw told me to stop eating gluten and brown rice. I’m 96lbs and 5’2. I don’t want to lose any more weight. I react to a lot of things. If anyone has any other suggestions, I would definitely appreciate. This is very debilitating.
Is there a specific test for MCAS that I can ask my D.O. for? I believe I have it. Back broke out first, now my calves are covered in hives. Saw my NP this past Thursday, she thought it was this and suggested an ointment with botanicals from Vitamin Cottage. I also have Lyme and Babesia.
The itching is driving me nuts!
Hi Dawn, Diagnostic criteria for MCAS can be found here
Hi Jill,
I’m in my mid 50’s and was just diagnosed with Ehlers-Danlos syndrome and POTS last year. Horrible that it took so long and that Iwas forced to suffered through so many medical Drs referring me to psychiatric people because they thought I was a hypochondriac even after having dozens of surgeries, but be that as it may. Fortunately, I found someone who is helping me now, a Chiropractor and Dietary expert, but we are perplexed by my inflammation not responding to treatment. My inflammatory marker is almost 10 and my son has the same problem. I cannot afford the $3000 for genetic testing, and to what end? I’m considering the elimination diet for starters, but I was wondering if there are any Drs on the East Coast, Boston area, that can help with diagnosis and treatment? I went to the only geneticist in the area, but he just sent me on my way, said there’s no cure and to just treat symptoms, contact him if something severe happens (as if this chronic state I’m in isn’t bad enough!), then said, “Good luck”. What can I do?
Hi Lisa
You might try someone trained in functional medicine and can search by zip code at http://www.ifm.org
warmly
Dr Jill
My tryptase level was normal, but I feel like I have MCAS. I react to so many things and I can’t even handle tiny amounts of supplements diluted in water. Klonopin helps somewhat but not completely. This has been going on for 11 years and I don’t know what to do. Is there another test that I can try?
MCAS is a clinical diagnosis so normal try-taste does not rule out a mast cell disorder
I have Lyme and Bartonella and MCAS as a result. The weight will NOT stop piling on! Foods cause reactions, supplements, prescriptions, even vitamins do! I just had a reaction to high dose B5 that lasted a week long! So sick of this merry go round. I’ve been suffering with these symptoms severely for about 2 years straight now and Lyme since 2012. Don’t know what the magic bullet is. I’m trying to treat the Bartonella but MCAS has not improved in the slightest. Constantly finding new things I can’t eat/take on a weekly basis, constantly having setbacks, and most upsettingly, constantly having to restrict my intake due to weight gain (water retention that just accumulates and never goes away). In fact within the first year I got diagnosed with Lyme I put on 50lbs (probably mostly water) thanks to MCAS! It took five years to lose it and it’s a daily nightmare trying to keep it from inching up and up and up again. What a depressing life this turned out to be.
hi wanted to see if you made an improvements. has anything helped? im dealing with the same stuff you are
Hi Dr. Jill,
Thanks for your post on MCAS and I was wondering if it is possible for mast cells to react negatively initially to medications/supplements that are supposed to calm them down? I am a hypermobility/EDS person and I have tried ketotifen and quercetin, which both caused worsening symptoms (breathing and even GI issues), and now my allergist prescribed an ICS inhaler that is causing the same issue. If I push through the reactions, it does get better after a week or so, but I get pretty much back to where I started. I have seen a functional medicine person before and they even struggled with me (investigated food intolerances/allergies, lyme, mold, etc with no improvements)… Any thoughts?
Hi POTSgirl,
with MCAS it takes much trial and error and elimination of inert ingredients by compounding the formulas to see if that helps. It may take 10-12 different trials of medications, including compounded versions before finding what works best to control your symptoms. And if you have ongoing chronic infections or mold exposure, all bets are off until you fix the original trigger.
warmly
Dr Jill
have you been tested for the MTHFR gene mutation? It can cause alot of random reactions to medications.
also with the inhaler…I found out I had a Salicylic acid intollerace while I was being treated with inhalers. Evidently most inhalers have some form of salicylic acid in them (asprin) and will make asthma symptoms worse in a handful of people. and ICS inhalers did not work for me due to the MTHFR gene mutation.
just suggestions to research. I hope you find your answers you need!
I have been dealing with Interstitial Cystitis and gut issues for just over two years. I suspect that mast cell/histamine issues play a role because when I have taken Zyrtec daily for a over a year and it helps with the frequency issue. However I’ve gained 25 pounds in the last year and I highly suspect the Zyrtec is affecting my ability to keep my weight down. I’d like to switch to something else that would target the same issues. I have tried quercetin (quercetin by itself) twice and both times, within 3 to 4 days after taking it my urine smells really strong-like smoked meat. Do you have any suggestions for replacing the Zyrtec? I cannot take your Hist Assist because it has absorbic acid, which irritates my IC. I started LDN 2 months ago, I’m up to 3.5. It has really helped me with sleep but I have not yet seen help with the IC.
yes, interstitial cystitis is often exacerbated by mast cell issues. You can try plain Quercetin or compounded zyrtec or allegra or claritin
Hi Jill
Great info! I have Lyme, CIRS, MCAS and an autoimmune condition. I can only eat 3 foods and cant tolerate any supplements or meds. I have mast cells flaring in my esophagus and stomach if i eat even a trace of a trigger food. My microbiome is messed up, bile reflux, SIBO as well. Would taking a binder like charcoal be a good starting point for me? I tried LDN and was praying it would be my miracle medicine but it flared my TH1 immune response and made my autoimmune problem worse. I am really desperate. All my labs are off and feel im headed towards death. Also spent $50K last year on my health and dont have a single positive thing to show for it. ANy suggestions on a good starting point would be wonderful and i would be so grateful. thank you
Jason
It’s hard to say
It’s hard to say
It’s hard to say
MCAS has ruined my life. I’m suffering terribly from mold toxicity and have become completely bed ridden. I’m unable to eat anything. I’m down to chicken stock and boiled meat. I’m wasting away and dread waking up in the morning. If I eat so much as an organic green bean, I’m suffering from 160 beats per minute, trembling, and unable to talk. I went from happy to healthy to dying and unable to walk…. no doctor will treat me and I don’t know what else to do. I’m so weak from being unable to eat I can’t even stand. This is a slow and scary death. I’ve lost my home and everything. Wish you were taking new patients.
Sarah – I am so sorry to hear about your suffering. I suggest trying Dr. Theoharides or Dr. Afrin
warmly
Dr. Jill
Also infrared sauna
In addition to mold remediation and mast cell supportive supplements, both of which improved my MCAS to a point, I found the Dynamic Neural Retraining System by Annie Hopper to be a tremendous help. It seems that after 2 years of crazy reactivity my nervous system needed a reboot. I also found that use of a PEMF mat cleared up some residual symptoms. 18 months after beginning treatment, I am symptom free. I am so grateful to have my life back.
I forgot to mention that slow and steady mycotoxin detox was part of my treatment also. But the DNRS was a game changer.
Hi Janice
Thank you for sharing your success! I agree that DNRS and other limbic retraining activities can help symptoms of MCAS
warmly
Dr Jill
Most people in my area have no knowledge of the fact that scalp therapy shampoos for fast hair growth (of course without any sulfates, parabens or DEA) are a thing. We all now may possess longer hair and achieve more options. Definitely worth searching.
Whether you’re assessing hair loss, damaged hair, preventing hair disorders, hair growth, hair and scalp care in general, very similar ideas become relevant.
As a general rule, you have to avoid hair products and treatments that contain chemicals like parabens, DEA and sulfates.
What’s beneficial for your hair is healthy for your skin as well.
It goes without saying your content on this page is so useful for multiple reasons. It steers away from the common errors and errors so many fall into: buying ineffective alternatives. Keep it up!
totally agree, Shemika! Thanks so much for sharing
I’ve been on LDN for 2 years. Honestly, I don’t know if it is working or not. I get the same neuro symptoms and my cycle is my biggest trigger. Antihistamines make me agitated and depressed so I am looking into a more herbal/holistic approach.
20 mg of claritin 2x a day
Ketotifen eye drops as needed
choline (1 x a day) paired with b2 (400 mg 2 x a day) helps with slow digestion&dumping syndrome and reduces intestinal swelling.
hydroxy andneo b12
Its the only relief I’ve found. I watch my diet super close…as well as any chemicals in my environment. I have a low salaclic (asprin chemical spelled it wrong lol) acid diet.
I’ve tried doctors and specialist and no one helped me. no one believed me. i had to keep trying things on my own till i found something that took away the swelling and i could breathe again? without this combo i will balloon up to 3 pants sizes larger, my face looks like the stay puff mashmellow man and i wheeze like nobodies business.
Hi Jill!
I’m dealing with chronic urticaria,stomach aches, lung flare ups, low blood pressure and more. I just found out I have hereditary alpha tryptasemia. I have super high tryptase. Some say this is a mast cell disorder and other put it in its own category… . Dr said xolair would help but I’m nervous about the side effects. Wondering if LDN would be a better choice? Thanks for listening 🙂
Ps: I forgot to mention I’ve tried histamines types 1 and 2, ketotifen and cromolyn but nothing has worked for the urticaria….
This information has provided hope for recovery from illness persisting from my covid-19 infection in March of 2020. Thank you. I believe this is a huge piece of my puzzle. I live in rural Arkansas where I cannot access healthcare for a multitude of reasons. Mainly because I haven’t been able to work in over a year now and cannot pay the tens of thousands I owe from the initial infection, where I was mocked, degraded, and treated in ways I still cannot process. The majority of people here do not believe the virus is real, even today. They worship Trump. I was a gymnastics coach. Now, I struggle to lift a gallon of milk. You have given me hope to continue to fight. Thank you.
Ive barely any words.. I’ve been searching for answers and you’ve given them to me. Reading this was check check check ✅ so many confirmations. Thank you!!
Hello,
I am currently trying to figure out if I have MCAS.
My biggest symptoms are bladder and urinary pain. Diagnosed with interstitial cystitis, hashimotos and alopecia. Also breathing issues, fatigue, joint/muscle pain, pelvic pain, hair loss and chronic diarrhea.
Working with some functional drs to trying to slow the isswie
Do you think this sounds like MCAS ?
I should also say that this all came out after the vaccine.
I’ve dealt with MCAS since I was ten. Back then, it was called a hyper histamine system, and I carried an epi-pen for years. We believe the condition may have been triggered by a bad reaction to a Tetanus shot, but regardless of the cause, I’ve suffered with it for 40 years,..discovering through trial and error what triggers are worse than others. PEG is one of them…that’s found in the majority of cosmetics and many medications, even some anti histamines. I can’t take most DAO boosters due to the fact they are developed from porcine. So, treatment for me is dietary and supplement based … which gets real old, real quick. C’est la vie, I suppose.
Anyway, thank you for the info found here on your site.
I really appreciate this post. I’ve been looking everywhere for this! Thank goodness I found it on Google. You’ve made my day! Thx again.
I have excessive tachycardia and extreme inflammation. I was forced to move to move to a lower elevation and away from forest fires to breathe about 5 months ago. I had covid, almost died, about 10 months ago. Left my oxygen behind and a prayer. Still cannot work. I do medical research. This article is excellent. My diagnosis is lacking substance because of a lack of understanding by my medical team. All these symptoms are noted. I have been under self care because I lost my insurance.
I am very knowledgeable and proactive in my care. I do utilize many natural approaches whenever possible. I was wondering why I was craving antihistamines, H1 and H2. I’m wondering if there is a bradykinin connection as with the spike protein?
I am sorry to hear of your suffering, Matthew. Thank you for sharing your journey. There is absolutely a link and you may find my interview with Bob Miller on IL-6 interesting… and there are two with Beth O’Hara on MCAS – Episode #29 and Episode #78 on Mold and MCAS.
Dear Jill
I have contended with MCAS, Lymes, Bartonella, SIBO, Lupus, POTS, Candida , Severe histine issues plus. I was exposed to mold several times and high long term stress and trauma. I have chemical, sound, motion, frequency triggers. I have managed with most of treatments listed except LDN. I have had to rotate anti fungal – yeast meds and antibiotic courses to keep levels down. I also have rotated steroid when a absolutely necessity and Hydrochloroquine. The chronic inflammation has weakened muscles and caused arches to go flat and rupture Achilles tendon on left and compromise right. I was beginning to get some balance the got Covid twice. Increase issues have cause nerve firing and adrenal stress with cognitive challenges. Recently I was told about hydrogen therapy and after second treatment ( 20 minutes inhaled gas) three days apart stormed. In research found SIBO produces extra hydrogen. Does that create a problem using hydrogen therapy. Everything I have read claims it helps reduce inflammation, ROS, and MCAS. Wondering if should be avoided or tried again at lower levels in water rather than gas inhalation? Thanks so much for being a voice in the darkness. After 40 years of being told it is in my head, lab work shows nothing is wrong, or we can not do anything for you……… it is nice to be validated in the fight for life and be given hope and support. Keep up the good work and we appreciate your compassion.
My own ongoing and repeated experience has been that when doctors say something is all in your head, it is because they are up against a diagnosis that escapes their medical radar. I think this is extremely unkind to patients, and is medically irresponsible. Doctors must keep an open mind to new diagnoses, and have a real responsibility to their patients to think instead of using textbook graphs and charts based on which they diagnose. I also suspect (I am not a doctor) based on personal patient experience, that the mainstream medical tests a) miss many things that fall through the cracks b) use gross illness as their yardstick. Wherever we fall short of the penultimate, we are told it is in our head. Surely there must be a progression of medical events, and these in my humble patient’s experience and viewpoint, are often missed in mainstream medical testing. We are not alone, and it is not in our head. Please let’s all raise awareness with doctors and hospitals, this is how we can help. Thank you all.
Dee, I couldn’t agree with you more. It is disappointing when patients are treated like the symptoms are imagined just because the physician doesn’t see evidence of anything wrong on limited lab tested. We need to dig deeper to find root cause and always trust the patients experience as valid.
I am not out of the woods and am growing in my knowledge of MCAS. That said, I have found that coconut oil helps me to cut into a flare. I also rub it on topically if there is burning/tingling in my extremities, which is one of my symptoms. It cuts into it…every time. Be aware that it also will badly stain your clothes, so do this under your jeans, and use a t-shirt underneath your regular clothes. But given that, it really does help me. It helps a lot internally to settle down inflammation. I also have found that using the Weleda Muscle Massage oil to be very helpful as a topical, thanks to the arnica and lavender oil combined. I can’t guarantee that what helps me will help others, but I did want to weigh this in. I do hope this helps others. God bless and be well.
Dr Jill, can MCAS cause or contribute to elevated fasting blood sugars even where the HgA1C is healthy and normal, and daytime sugars are in a healthy range? My diet is impeccably clean, and I am really puzzled why this is happening. This was not an issue before, and I am attributing it to an event which caused my already-existing MCAS to flare even more than before. Your information is helpful and will be followed up with my own doctor as supervisor.
Thank you so much.
Hi Dee
MCAS itself doesn’t lead to elevated blood sugar but one of the most common causes of MCAS, mold exposure can absolutely trigger elevated fasting blood sugars and dysglycemia. I would look into any possible sources of mold in your home or environment and be sure that is not a contributing factor to both your MCAS and your elevated blood sugars.
warmly
Dr. Jill
Dear Dr Jill et al, for those needing medical coverage but can not afford it, here is a source that may possibly fill in some of the gaps. http://www.candid.org this is not a grant making entity, but instead is a library specializing in nothing but grants of all kinds.
The Foundation Center Library, now merged with Candid.org, was founded in the 1950s, is the go-to source for nonprofits, their books are in many mainstream and University libraries. The database is enormous. They are Not a scam by any stretch!
See the Foundation Grants to Individuals Online, and enter the topics that apply to you into the search box. Search areas of need (medical), your profession, religious background, ethnic background, geographical location. I have even seen a homemaker’s category. Some grantors, for example, may fund someone of a certain profession for temporary medical coverage. When I say temporary, before COVID hit I got a collective $9,000+ from three different sources, for alternative medical therapy not covered by my insurance. Funds are paid to the service provider ,so it does not affect the grant recipient’s taxes and the money goes exactly where the grantor wants it to. While some grantors close due to crises such as COVID, others open up their doors exactly because of a crisis. Search the site for sources that fund in emergency situations. They definitely exist.
When searching, note the grantor’s funding history, their philosophy, and weave this into your grant proposal.
It can take several months for Boards to review applications and select their winning applicants. Be persistent and patient, knock on several doors. If you are turned down for a grant, ask why. Jot notes and resubmit a revised proposal. Sometimes the second try is funded where the first was turned down.
Be sure, in your grant proposal, while outlining need to also be a feather in their cap. Note your accomplishments, honors, civic volunteering, child raising, contributions to society, philosophy, etc . Sell yourself to them. The grants are funded by major corporations which get a tax writeoff for these charitable causes. They want to look good as a business for funding good people and good causes. So be one of the people they can brag about funding, it is good for their business image as well as for you. Win-win! And good luck!
Hi Dr. Jill,
First thank you for all your great info! My family and I are wondering if you have any recommendations on meds and supplements to treat mast cells in the respiratory tract? I have horrible shortness of breath (all scans and tests are clear) and unfortunately I did not tolerate the LDN.
Warmly,
Kristine
Hi Kristine,
You may try NAC or quercetin which will both help. Also prescription H1 and H2 blockers and mast cell stabilizers and nebulizer glutathione or NAC
warmly
Dr Jill
Hi Dr. Jill,
I have been dealing with histamine intolerance every since my covid vaccine. I’m an RN and have seen many patients with this issue in varying levels of severity. It started with itching all over my body and then the hives appeared. They are burning and itching at the same time. It was absolutely debilitating in the beginning. I also have had burning in my vaginal area and pain. My obgyn has not been able to find any sources of these symptoms and all swabs are normal. I am now getting hives mostly only in the first half of my cycle to a couple of days after ovulation and the other symptoms off and on throughout the month. I’m dramatically better but still cannot tolerate certain foods when before this whole situation I had absolutely no food issues. I get hives with a small amount of red wine. I’m not a big drinker at all but like to occasionally have a glass of red wine which i haven’t been able to do in over 1.5 years. I did have mouth, inner ear and eye itching at times as well, that’s mostly gone. Sometimes I get a little itchy in my eyes and then it stops. I’m sure I also have mold exposure because I live on Kauai and it is definitely prone to mold. However, these symptoms were very correlated with my vaccine. I’m plateauing with my recovery and am hoping to find solutions to get me back to normal. Any suggestions are greatly appreciated!!
Hi Katie – I am sorry to hear it. Wine aged in oak barrels is a huge histamine trigger so you are actually best to avoid wine or ironically get a less expensive bottle that was not aged in oak. You can do some detox with the mold with glutathione and liver essentials for detox. I also suggest Low-dose naltrexone and maybe ketotifen for mast cell stabilization. And read more about autophagy here which may also decrease the spike protein effect.
My integrated doctor thought I may have MCAS but I didn’t respond to the initial treatment she prescribed (low histamine diet, antihismines for a few weeks as well as some mast cell stabilisers) so we switched to trying to treat my hashimotos. She prescribed a low dose of naltrexone to lower my inflammation levels and within days my burning mouth syndrome (which she was convinced was caused by MCAS) is the best it’s been in years. It’s almost gone and I am in shock. This was not a result I expected but maybe I do have MCAS after all!
The *conversation* re: histamine/ MCAS must include a discussion of high oxalates in the diet / problems with oxalate metabolism. (The worst of the high-oxalate culprits include *health foods* spinach smoothies and almond flour and nut butter products)….. Oxalates accumulate in the tissues; dietary oxalate must be reduced very, very slowly to avoid ill-effects of *oxalate dumping.* Reducing stored oxalate in tissues can take years. Consider, also, oxalate content in herbs and supplements. Tumeric root (but not extract) is high oxalate… Vitamin C metabolic end products include high amount of oxalic acid… Oxalate can grow on molds/ fungi… And on and on. (See short tutorials on “oxalate” from EONutrition on youtube for overview) …. Most holistic practitioners have a blindspot when it comes to oxalates (There is *so much more* to the picture than hyperoxaluria, kidney stones, and evaluation of OAT test ratios) . . . Consult the work of Dr. Stephanie Seneff,, Susan Owens, Donna Gates (“Body Ecology”) and Sally K. Norton (“Toxic Superfoods”) . . . It is imperative to LOWER the amount of oxalate in the diet SLOWLY. Mitigation strategies can include #1 healing microbiome …. increasing probiotic- , sulphur-, and mineral- rich foods (or supplements… Eat more fermented vegetables)… adding dietary calcium/ mag citrate to meals… supplementation w/ biotin, B1,B6, … Oxalate enters the cell via the same transporter enzyme used by sulphur. (SLC26A )…. Short story: high oxalate diet can wreak havoc on mitochondrial and cellular membrane integrity…. Epsom salt baths or foot baths can be a good way to increase sulphur intake transdermally (espec. if sensitive to sulphur foods… Sensitivity to sulphur-rich foods (tied to hydrogen sulfide gas in the gut) can take time to resolve … Lowering oxalates while healing microbiome will help folks increase intake of beneficial sulphur-rich foods (slowly, over time)… Eat organic! AVOID glyphosate! (Glyphosate breaks sulphur metabolism.)
I have been diagnosed with h-EDS, MCAS, and POTS last year. My symptoms started in college and have worsened over the past 7 years. I have been prescribed LDN, anti-histamines, cromolyn sodium, but I didn’t experience any improvements from those.
I am meeting with Dr. Theoharides in a few weeks and hoping to get some helpful guidance from him. In the meantime, I will try a low-histamine diet for two weeks but seeing as the anti-histamines did not give me any improvement, I doubt it will work for me either. Feeling hopeless 🙁
Hi Madeline – it might be worth seeing a functional medicine doctor to get to the root of the MCAS – often mold exposure or other trigger will be causing the symptoms and the best way to treat is find the core issues which are contributing to your symptoms.
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