Those incredibly strange symptoms of yours… The debilitating fatigue. The other ones no doctor can make sense of. The same symptoms that make you question your sanity…
Those could all be the result of a strange condition known as mast cell activation syndrome.
Of all the strange illnesses that contribute to chronic fatigue, mast cell activation may be the most poorly understood. Which means that you’re going to need to know everything you can about this strange syndrome.
I’ll help you do just that in this post!
Much like chronic fatigue syndrome, mast cell activation syndrome is not something your family doc is going to have in-depth knowledge on. At best you’ll probably leave his or her office with a prescription for an antidepressant. At worst, you’ll be told that your symptoms are not real and that they are all in your head.
Your symptoms are not in your head. They’re very real. Today, I’m going to help you better understand mast cell activation syndrome. And how it could be the root cause of your fatigue.
Let’s jump in!
What the heck is a mast cell?
You may know mast cells as mastocytes or labrocytes. Each of those words is referring to the same type of cell.
And your body is composed of many different types and quantities of cells. Mast cells make up a small percentage of the total number of cells in your body. Even though they don’t take up a lot of space in your body, mast cells can have an intense effect on nearly all of your body’s systems.
The defining characteristic of mast cells is that they contain histamine. You probably know histamine in the context of Benadryl, Claritin, or any other over-the-counter allergy medication. These medications are anti-histamines.
Histamine is the substance your body releases during times of inflammation. And it’s your mast cells that are responsible for that release! Those seasonal allergies of yours, mast cells are the culprits behind your runny nose, tearing eyes, and itchy skin.
But allergies and inflammation aren’t the only roles of histamine and mast cells. These are also incredibly important in regulating your stomach acid production, acting as a neurotransmitter in your brain, and keeping your immune system in check. (1)
This is why those symptoms of yours that don’t seem to make any sense could all be coming from your mast cells and the histamine they release! Even your fatigue could be triggered by your mast cells.
The weird and wacky symptoms associated with mast cell activation syndrome
If you’re dealing with mast cell activation syndrome, you’ve probably been told that your symptoms don’t make sense. And that they must be in your head. You’ve probably even been referred to psychiatrists.
By the time I see a patient with mast cell activation syndrome, she has come to believe that the symptoms must be in her head. I need to take the time to understand all of her symptoms. No matter how weird or wacky they may sound.
Below, I give you a list of the more common symptoms I see associated with mast cell activation syndrome. Please note that not all of these symptoms are recognized by the American Academy of Allergy Asthma and Immunology (AAAAI). I’ve combined both my clinical experience and the recognized symptoms in the below list. (2)
- Often these patients will have a diagnosis of chronic fatigue syndrome.
- Intense anxiety and/or depression
- Severe pain that can localize to joints, muscles, tendons or bones
- Strange neurological symptoms
- Ringing in the ears
- Sensitivity to a wide variety of stimuli including:
- Swollen lymph nodes
- GI issues including:
- Cognitive challenges including:
- brain fog
- decreased ability to focus
- decreased memory
- Challenges concentrating
- Skin rashes
- Challenges with balance or equilibrium
If you have all of the above symptoms (and more!) your suspicions should start heading in the direction of mast cell activation syndrome.
If you’ve been told you have Lyme disease, chronic fatigue syndrome, fibromyalgia, or IBS, it’s worth looking into mast cell activation syndrome. Below, I’ll get into the specifics of how your mast cells get activated and how to deactivate them!
Happy mast cells vs angry mast cells
Your mast cells help your immune system liaise with the outside world. The areas of your body that most often come into contact with the outside world include your GI tract, sinuses and respiratory tract, skin, and genitourinary tract. This is also why the majority of the symptoms associated with mast cell activation syndrome affect those systems!
When your mast cells come into contact with an invader – think virus, bacteria, or some other unwanted guest – they sound the alarm bells. The alarm bells are analogous to signaling molecules. Mast cells release histamine, serotonin, or tryptase as signaling molecules that let your other cells know there’s an unwanted guest inside.
When your mast cells are happy, they simply patrol your body looking for unwanted guests. When they identify an unwanted guest, they signal the alarm. Your immune system comes in and removes the unwanted guest. This is how your mast cells should function. But all too often something goes awry.
Angry mast cells are known as activated mast cells. They’re the overeager new bouncer that kicks absolutely everyone out of the bar; even the patrons who are behaving. When your mast cells become activated they no longer pick and choose when to respond. Instead, they respond to absolutely everything they encounter.
Happy mast cells allow you to consume food without issue. Angry mast cells think the food you eat, the air you breathe, and just about everything else you encounter is a threat.
If you find yourself overly reactive to foods, smells, sounds, chemicals, touch, and just about everything else, look to your mast cells. Happy mast cells allow you to comfortably interact with your environment. Angry mast cells react to just about anything!
Food allergies are not the same as mast cell activation syndrome
Nearly all of my patients with mast cell activation syndrome arrive at the clinic utterly confused about what to eat. They’ve almost always done either food sensitivity testing or an elimination diet with a previous practitioner. Yet they still cannot tell which foods their body tolerates and which foods cause a reaction.
Food allergies or sensitivities are different than mast cell activation syndrome.
They’re very, very different. Even if your food sensitivity test says you can eat tomatoes, you may still find tomatoes to cause an intense, unwanted reaction within your body.
Food allergies and sensitivities are consistent. The results are reproducible. If you have non-celiac gluten sensitivity then every time you eat gluten you’ll feel sick. Activated mast cells are totally inconsistent. Some days you may find your body loves and tolerates tomatoes. Other days, you’ll find tomatoes cause all sorts of crazy symptoms.
If you’re utterly confused about which foods cause a reaction in your body, look to your mast cells.
How do you diagnose mast cell activation syndrome?
Diagnosis is no cakewalk. Your mast cells release over 200 different substances! Knowing which is the right one to measure is the like finding the proverbial needle in a haystack. To further complicate matters, substances like histamine degrade minutes after being released. This makes catching elevated levels in your blood even trickier.
Before any lab testing, look to your symptoms. Symptoms point in the direction of mast cell activation syndrome. Go through the above list of symptoms, if you’re dealing with nearly all of them, you should start considering mast cell activation syndrome.
Another hallmark sign of mast cell activation syndrome is utter confusion surrounding which foods you tolerate and which foods provoke a reaction in your body. If the foods you tolerate changes from one day to another, this should get you thinking about overactive mast cells.
Another sign that points in the direction of mast cell activation syndrome are your previous diagnosis. A diagnosis like chronic fatigue syndrome, fibromyalgia, IBS, etc. all could be the result of overactive mast cells. If your doctor diagnosed you with one of those strain conditions, further investigation in the health of your mast cells is warranted.
But symptoms aren’t a concrete diagnosis. Lab tests are. Fortunately, there are a number of labs you can run to help identify if your mast cells are misbehaving. Below I give you a list of some of the current testing options for mast cell activation syndrome:
All of these tests are incredibly specialized. If you’re working within the conventional medical system, I suspect your only chance of having them run will be after consulting with a hematologist. It’s highly unlikely that your family physician (unless he/she is functionally trained) will be able to order the above labs.
Now that you know exactly what mast cell activation syndrome is and how to properly diagnose it, let’s jump into treatment. To be clear, mast cell activation syndrome tends to be a symptom of another illness. Said another way, your mast cells become destabilized by an infectious agent.
Proper treatment needs to identify and remove the infectious agent. In the next section, I’ll show four hidden causes of angry mast cells!
4 Hidden causes of mast cell activation syndrome
The most important part of treatment is to identify the underlying illness that is causing your mast cells to activate. Often, this is due to an undiagnosed infection. Some of the more common infections that trigger mast cell activation disorder include:
Hidden gut infections
If you’re dealing with an overgrowth of bacteria, viruses, or fungi in your gut, your mast cells are going to be overly active. (7) That means you and your practitioner need to be on the lookout for infections like SIBO, candida, and other intestinal parasites. I recommend performing a SIBO breath test and comprehensive analysis of a stool sample.
Molds and their associated mycotoxins are almost always the root cause of mast cell activation syndrome and/or chronic fatigue syndrome.
Don’t think for a second that because you don’t see any mold in your house that you’re safe. Estimates put 50% of all homes and commercial buildings to have water damage. Mold tends to grow in areas that you can’t see. Think HVAC systems, crawl spaces, and attics.
I’ve done a deep dive into Chronic Inflammatory Response Syndrome (CIRS) and toxic mold in this post. If you’re not familiar with CIRS, be sure to check out that above post!
Mold has been shown to trigger an inflammatory response within your body. In 23% of the population, this inflammatory response cannot be turned off. Part of the inflammatory cascade involves histamine and your mast cells. This is why mold may be the root cause of your skin rash.
Research suggests that mold could very well be at the root cause of your mast cell activation. (8) So, if your symptoms fit with too much histamine, be sure you find a mold-literate practitioner to work with!
Toxicity caused by a build-up of heavy metals has been shown to destabilize mast cells. (9) Those old amalgam (mercury) fillings of yours could be at the root of your chronic fatigue or mast cell activation syndrome.
Lyme is one of the more complicated infections your body has to contend with. The Borrelia bacteria found in Lyme disease are able to trigger your mast cells. In order to calm your mast cells, Lyme disease and all the co-infections associated with it need to be remediated.
Of all the above toxins, mold is the one I see most often in the clinic. If you suspect mold is triggering your symptoms, take our mold symptoms questionnaire to see if mold could be at the root of your problems.
Can your diet improve mast cells?
I need to emphasize that diet alone will not fix mast cell activation syndrome. With that said, alterations to your nutrition can help to improve your symptoms.
The most common recommendation is a low histamine diet. (10) I’ve found that the low-histamine diet is one of – if not the most – restrictive nutrition plans you can follow. It’s anything but sustainable over the longterm. But if it does help to improve your symptoms, adhering to a low-histamine diet may be helpful.
My personal recommendation to most patients is to follow a low-carb, high fat, or ketogenic diet. This diet is relatively low in histamines yet is far more sustainable than a low-histamine diet.
More treatment options for mast cell activation syndrome
You cannot supplement yourself out of mast cell activation syndrome. Supplements help, no doubt. But they will not help you uncover and treat the root cause. To successfully treat mast cell activation syndrome, you must look to the four hidden root causes:
- Hidden gut infections
- Toxic mold
- Heavy metals
- Lyme disease
Treating any of the above root causes will take time. Often, lots of time. In the interim, it’s important to help improve your symptoms. Below, I’ll give you my recommendations on the supplements best suited to helping stabilize your mast cells.
A common prescription medication to help stabilize mast cells is called cromolyn. But even cromolyn is not as effective as quercetin at helping stabilize your mast cells. (11) Quercitin is in the same family of vitamins as vitamin C. You’ll find high amounts of quercetin in raw fruits, veggies, and greens.
I default to Dr. Neil Nathan’s recommendations on dosing quercitin for patients with mast cell activation syndrome. Start with 500mg once a day. Take this dose 30 minutes before a meal.
Taking quercetin before eating is extremely important. Remember, the goal is to help stabilize your mast cells. Food often destabilizes them. Therefore, you need to consume quercetin before eating.
Dr. Neil Nathan recommends increasing your quercetin dose – so long as you tolerate it – up to 2000mg before each meal. Just remember to start increasing your dose slowly. Make sure you tolerate the supplement well before increasing your dose.
Diamine oxidase or, DAO, is an enzyme your body creates to help break down histamine. Under normal conditions, you have relatively small amounts of DAO in your blood.
When you’re dealing with mast cell activation syndrome, you’re going to want a much higher level of DAO in your blood. This will help your body digest the excess histamines.
I use two different companies DAO products –Seeking Health has a product known as histamine block. and Xymogen’s HistDAO. Taking this supplement with quercitin before meals can help temper the symptoms associated with overactive mast cells.
Remember how I said one of the common substances released by mast cells is something called tryptase?
Quail’s egg contains ovomucoids which block the binding of tryptase. This should help bring a stabilization of your mast cells. I recommend using the AllQlear supplement.
Treatment tips and tricks for mast cell activation syndrome
Sometimes, you need to address the symptoms of mast cell activation syndrome before treating the root cause.
If you’ve attempted treatment for toxic mold, Lyme disease, heavy metal toxicity, or hidden gut infections but found that your symptoms always flare-up to unmanageable levels, you need to calm your mast cells before treating the underlying or root cause.
Start by altering your diet to a low-carb, high fat/keto diet. If that alone doesn’t improve your symptoms, add the above supplements to help stabilize your mast cells. Once your symptoms are more tolerable, then it’s time to – slowly – start treating the root cause of your mast cell activation syndrome.
Ok, now it’s time for me to hear from you!
What sort of strange symptoms did your mast cells cause in your body?
How did you stabilize your mast cells?
Leave your answers in the comments section below!