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Mast cells are an important part of your immune system, without them you would never heal from an injury. However, there is a condition where they become overactive and cause serious problems in the body – this condition is called mast cell activation syndrome (MCAS).
Mast cell activation syndrome is different from mastocytosis because mast cells aren’t accumulating in various organs. With mastocytosis, there is a proliferation or growth of mast cells, like a cancer. Mastocytosis is also very rare and not usually triggered by an irritant.
On the other hand, MCAS is characterized by overactive mast cells. MCAS can be imagined as though something rubbed up against your mast cells wrong, causing them to become aggravated. Another important difference between MCAS and mastocytosis is that MCAS patients will often come up normal during lab work.
Many things can trigger MCAS, including:
- Mold
- Chemicals
- Allergens
- Viruses
- Heavy metals
- Toxins
From what I’ve seen in my practice and have heard from my colleagues, mold is probably the number one trigger of MCAS, followed by infections. Once these cells are activated they start pouring out all sorts of inflammatory agents, such as histamine, and cytokines.
Beyond Histamine
Up until recently, when anything to do with mast cells where mentioned, histamine was the main inflammatory mediator that came to mind. However, we’ve come to realize that histamine is a very small part of the story.
Hundreds of chemicals have been associated with mast cells and they all have different actions in the body. Mediators include:
- Histamine
- Cytokines
- Interleukins
- Prostaglandins
- Chemokines
Symptoms of MCAS
Currently, the most common illness associated with mold is chronic inflammatory response syndrome (CIRS) but we are finding MCAS is another disease often triggered by mold exposure. Similar to CIRS, MCAS has widespread symptoms that affect nearly every system of the body. This adds to the difficult nature of diagnosing MCAS properly.
Here some of the most common symptoms of MCAS:
- Fatigue
- Poor memory
- Brain fog
- Inability to focus
- Mood disorders
- Migraines
- Rashes
- Hives
- Low blood pressure
- Heart racing
- Becomes lightheaded when they stand up quickly
- Diarrhea
- Abdominal pain
- Constipation
- Nausea
- Bloating
- Strong PMS symptoms
- Allergy-like symptoms
- Asthma
- Wheezing
- Shortness of breath
It’s a common misconception that patients with MCAS have skin problems as the primary symptom. The number one sign of MCAS are neurological symptoms. However, they may also have skin reactions especially if there are a mold patient. Most of my mold patients have hives, flushing, and other skin reactions. This is especially true if they are coming in direct contact with mold or if they are detoxing from mold.
It is possible for a patient with CIRS to also have MCAS. You can tell this is happening when CIRS is correctly and systematically treated, yet the patient doesn’t get well. This is when doctors tend to notice things like flushing and rashes, which are all signs of classical histamine reactions.
Histamine is problematic because it causes blood-brain barrier permeability and gut permeability. Usually, this is accompanied by food allergies and sensitivities. Chronic conditions such as MCAS are inherently complex, this makes diagnosis a process of elimination.
When I see suspected MCAS patients, we have to systematically work through multiple potential diagnoses until we rule out each disease individually. Ultimately, we come to the conclusion that they are struggling with MCAS by ruling out other possibilities.
My Personal Experience with Mold and Mast Cells
In 2014, my office flooded and we had massive mold issues which I didn’t realize for several months. When I realized, I implemented the Shoemaker Protocol immediately. I started taking binders, used other detox methods, and removed myself from the mold exposure.
Shortly after, my body broke out in very severe hives. I took an anti-histamine to deal with the hives but realized what was happening was a massive mast cell activation in detox. My body was detoxing from mold through my treatments and by removing myself from the exposure, but it was causing mast cell activation symptoms. I experiences brain fog, respiratory issues, gastrointestinal distress, and my skin was covered in hives.
I’ve experienced firsthand mast cell activation – it can be very scary. What this means for me is that my body is going to continue to be more sensitive to environmental changes and toxin exposures than the average person. I am more prone to getting hives to exposures like VOCs and other triggers. While this is somewhat unfortunate, there is a lot that can be done for MCAS. Though MCAS treatment does require vigilance, it is possible to live a relatively normal life.
Biomarkers for MCAS
Though there is no definitive test for MCAS there are numerous tests you can combine to support your diagnosis. In the figure below, you’ll find the most common biomarker testing recommended for those suspected of having MCAS. There’s no one lab that does all of these tests, you’ll need to use both LabCorp and Quest.
When it comes to MCAS that’s triggered by mold, there are few biomarkers that are more common than others. These include:
- MMP – 9
- C4a (C4b is usually seen bacterial trigger)
- TGF beta
- VEGF
Also, you need to be sure that your doctor and the lab both know how to carefully handle samples for accurate results. Ultimately, blood test can’t really confirm or deny the presence of an illness. The best way to know if you have MCAS or not, is by ruling out other illnesses through a comprehensive process of elimination. Lab testing helps this process but it’s not the full solution.
Slide credit to Dr. Sandeep Gupta with Mold Illness Made Simple
MTHFR status and MCAS
When people have MTHFR, A1298C and C677T, They have impaired methylation. If they don’t have enough active methylfolate or active methyl B12 or P5P or Riboflavin they’re prone to have problems with methylation. This is especially important with anyone suspected of having MCAS,
Because methylation is one of the most important pathways our body uses to break down histamine.
In the situation where a patient has impaired methylation, deficiencies and B vitamins, and the MTHFR genetic mutation, this can complicate problems with excess histamine in the body. This is because the body is unable to break down histamine well. If I find a patient is positive for the MTHFR status, we can add methyl B12 and methylfolate.
Other ways the body breaks down histamine include the DAO and MAO enzymes.
Reducing mold exposure is the name of the game
If you suspect you have CIRS or MCAS, it’s important to check for mold exposure. without identifying mold exposure symptoms will only continue to get worse and treatments will be ineffective. this may mean removing yourself from the water damage building.
However, even when you fully remove yourself from a mold exposure your mass cells still might remain active. This is because they need assistance to detox and to return to a stable state.
Treating MCAS
When it comes to treating MCAS that’s been triggered by mold, you must eliminate mold exposure. Imagine your MCAS like a bucket, the more factors you have contributing to your activated mast cells, the worse your symptoms are.
You need to reduce the number of factors contributing to your MCAS. This is what I mean when I say you need to reduce your toxin burden. You might be surprised at how big of a difference it can make to get yourself into clean air and eating clean food. I always recommend eating as organic as possible, using a water filter, and an air purifier.
At first I can feel overwhelming, but if you change a little at a time, eventually you can make the overhaul necessary to live a full and healthy life. My patients often asked me if everything needs to be done with a hundred percent accuracy. When it comes to mold you really do need to remove yourself completely from the mold filled environment. In other areas of your life you might not necessarily need to be as strict after a while. However, it pays to be as strict as possible when you’re working to stabilize your mast cells initially.
There are a number of supplements you can take to help MCAS, these include natural antihistamines and mast cell stabilizers.
-
- Ascorbic acid
- Quercetin
- Omega 3s
- Vitamin B6
- Vitamin B12
- Vitamin C
- Glutathione
- Turmeric
- P5P
- Diamine Oxidase enzymes (DAO)
- Resveratrol
- Methylfolate
- Umbrellux DAO
- Lactobacillus rhamnosus
- Bifidobacterium spp
If you suspect you have mast cell activation syndrome, I recommend you find an experiences functional medicine doctor who you like working with and trust. Because working to get a chronic condition under control takes time and patience. The good news is – it is possible to live a full and healthy live with MCAS.
Resources:
https://www.ncbi.nlm.nih.gov/pubmed/24784142
https://www.ncbi.nlm.nih.gov/pubmed/28262205
https://www.ncbi.nlm.nih.gov/pubmed/23179866
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3753019/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/
19 Comments
Hey Dr. Jill,
Thank you for another very informative article! Do you suspect that MCAS is at the core of many symptoms for people with CIRS WDB and Lyme? I have both and am finding that when my MCAS is being controlled well (which so far has consisted of treating parasites, viruses, and limiting mold exposure) that I begin to feel lightyears better. But when I slip up and the MCAS is less controlled, all of the symptoms seem to reappear (cognitive, body aches, digestive issues, etc.).
This all makes me wonder if MCAS is at the core of these illnesses for many people and if the CIRS and Lyme just exasperate those MCAS issues. I’d love to hear you inclination on this.
Thanks!
Andrew
Yes, mold is a huge trigger to MCAS and there is some crossover of symptoms
hi Dr. Jill, very useful article. Being registered already, I can’t download the Exposed to mold – what next? guide. Maybe others encounter the same issue, please explain another way how to reach the guide.
I suspect the MCAS and mold being the reasons for the sudden and ongoing trigger of so many and worrying health issues. The negligence of the “traditional” medics on them is equal to crime.
Thank you for addressing wide spread and important health issues, and helping far beyond your practice.
Thanks,
Stan
Great article! Thank you for sharing, Dr. Jill!
I developed severe acne rosacea on my cheeks as a result of mold-induced histamine intolerance. It has been 1.5 years since I detoxed from the mold, and yet I still have the acne rosacea. The acne and HIT actually got worse the more I detoxed. I no longer have mold in my body, I eat a low mold diet, my CIRS labs look pretty good, and I have a high-quality air filter, yet my histamine intolerance never subsided. Any suggestions on where to go from here to address my skin? I am not currently taking H1 or H2 blockers but am considering trying to see if it would help – do you consider these safe to try in conjunction with more natural remedies?
Thanks!
Try checking gut for SIBO and fungal dysbiosis and hormone levels
thanks for a great article! I developed chronic hives back in October 2018. While I would like to say it was “suddenly” looking back, it was slowly there, but the hives were suddenly. A mild histamine tolerance had been there for years. Polyarthralgia which no one could tell me why, with negative CRP, ANA, and RA since my 20s. We went on a nutrient dense keto diet about a year ago and that totall helped with energy and pain levels. Also had … A constant high heart rate, chronic pain, low blood pressure, low body temp, raynauds, altitude sickness, & sensory processing disorder. My PCP referred me to an immunologist, but I have had to wait 7 weeks. Since then the hives got worse, the foods I could eat less, anaphylaxis, hives being triggered by food, estrogen, latex, pressure, fragrance, dust, life, lol. I suspected HIT and dismissed MCAS. But then MCAS started seeming more likely. It really made sense, given my whole life. And then the big lightbulb … because what was the straw that broke the camels back? Our place of worship has had mold in the wallpaper and ducts for years. My hives would start 30 sec after being in the building and I went into the building 4-5 times per week. I gave myself a one week break and my hives are less, I can eat more, and I feel better. Your article really makes me think I am pretty close to a revelation!! Have an immunologist appt this Thursday and will try a local functional med doc shortly thereafter if I don’t get what I am looking for. Anyway … I appreciate the article and could relate. Thank you!
Hello! I have recently discovered that I have mcas. My doctors do not know much on the subject. I am seeing an ent and allergist, and through getting a skin test they have determined I have pretty bad allergies to every mold they tested for. I have been given allergy drops to try and see if autoimmune therapy will work. My worry is, is that if I have mcas, and I’m super sensitive to mold, then wouldn’t the allergy drops which have mold in them cause my body to constantly be hyperactive and make everything much worse? If the solution is to get mold out of my life, wouldn’t putting it in me be super counter productive? I have also discovered that out of all the antihistamines, I can only take hydroxyzine to stop some of my symptoms which of course are flaring up like crazy by being on these drops. All other antihistamines cause very undesirable side effects, so I guess I’m hypersensitive to them. I know hydroxyzine is not good to be taking every day for brain health and heart health.. I’m just wondering if you have had any experience with patients who try allergy shots/drops when they have mcas?
Thanks a ton for any input!
LDI and SLIT may be helpful! 😊
I am just about to start a detox from Mold but I did not have MCAS symptoms until months after being exposed to mold and removing myself from it. For me there was no detox done. How it is possible that Mast Cells where triggered in this regard?
Is ascorbic acid not the same as Vitamin C? I see both are listed under natural antihistamines and mast cell stabilizers.
yes
Hi there! After 1.5 years of severe health issues (multiple sinus surgeries, pt for sudden unbearable hip and knee pain, dozens of new allergies, going into anaphalactic shock from a mosquito bite, gaining 40 pounds in a month, becoming severely hypothyroid, etc,etc) I finally figured out I moved into an apartment when everything started and thus determined it had mold. It took me dozens of doctors and I found someone to treat the cirs but everyone is very ignorant regarding mcas (the amount of times I’ve been neglected in a hospital or Dr office in the past year and told I just have anxiety is absurd). Luckily I didn’t listen to them and figured it out myself because it slowly began to kill me and this past January and February I went into what I’m certain are mast cell attacks every night about an hour after getting home — tongue swelling, very hot, urgency to use bathroom, hot chest and neck-basically anaphalaxing. Now I’m out of there and on cholestyramine to bind toxin and originally after moving out the detox was horrible and made me want to move back to mold honestly. I was having awful flares constantly with rashes everywhere and my tongue constantly swollen. My main question is — will my mcas calm down once all the toxins are out of my body when I complete my toxin binding course? Obviously I know they would come back if I moved back into mold, but ultimately I’m asking if mold exposure typically triggers it until toxins are out or if it triggers it and I’ll be having a swollen tongue and daily flares for life?
yes, usually MCAS will improve once the trigger is removed
Wow this is so informative! I was diagnosed with EDS and POTS in 2019 and suspected MCAS which began after I was exposed to black mold! I plan to get evaluated for CIRS and Lyme once it’s safe for me to go to physician’s offices again. Is there anything low risk to do in the meantime to detox? I am removed from the mold for a few years but I am still experiencing the same symptoms. I eat primarily organic, use an air filter, take epsom baths daily and also Zyrtec. Thanks! 🙂
Is the elevated histamine the cause of drastic diffuse hair loss after falling ill to mold almost 2 yrs ago. Ongoing, have about 20% of my hair left. Thank God it was super thick to start with. How do I treat this? Drs have told me once mold is out it will stop, told once hormones balance, once I’m done w antifungal rx shampoo, it’s always something else. Searched only myself to find hair loss can come from histamine r/t mold. Insight?
Mold and mycotoxin exposure may cause hair loss by various mechanisms including elevation of prostaglandins, interleukins and IgE mechanisms
Hi Dr. Jill,
Have you seen swollen left rib cage as a sign/symptom of MCAS? I’ve had it since living in an apartment with mold. Do you have solutions?
Hi Sarah
Best to get this checked out for appropriate diagnosis, do you think it is costochondritis? I have seen inflammatory reactions with mold exposure and underlying infections like Lyme, babesia and bartonella
warmly
Dr. Jill
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