Recently it has become increasingly clear that many patients who call requesting an initial psychiatric consultation are suffering from a common condition known as Mast Cell Activation Syndrome (MCAS). MCAS can present with extremely diverse fluctuating symptoms. Brain fog, anxiety, depression and insomnia are among the most common symptoms, and thus it is truly unfortunate that MCAS is not on the radar of most psychiatrists. When a patient reports massive bloating accompanied by a 15 pound weight gain in a week, or that they can only eat a very restricted diet because they have instant horrible reactions to foods, or are experiencing weird neurological symptoms, or that they have become ultra-sensitive to a wide variety of stimuli, I immediately wonder if MCAS is at play. For some patients, the recognition and treatment of this condition has made a big difference in terms of quick symptom relief.
Neil Nathan, MD has written an excellent chapter in his new book Toxic about MCAS. (pages 99-114).
Symptoms that Dr. Nathan lists which can be attributed to MCAS include:
- intense anxiety and depression
- Severe pain that can localize to joint, muscles, tendons and/or bones
- Unusual neurological symptoms like numbness and tingling in different parts of the body, paralysis and pseudoseizures
- Headaches
- Ringing in the ears
- Sensitivity to a wide array of stimuli, such as light, touch, sound, smells, foods, chemicals, and electromagnetic frequencies (EMF)
- Sore throat
- Swollen lymph glands
- Indigestion, including diarrhea, constipation, bloating, gas and heartburn
- Chronic debilitating fatigue
- Insomnia
- Cognitive difficulties, including brain fog and decreased focus, memory and concentration
- Pelvic pain
- Interstitial cystitis (a painful inflammation of the bladder)
- Shortness of breath
- Air hunger ( a feeling of being unable to take a deep breath)
- Skin rashes
- Difficulties with equilibrium and balance
When patients consult their primary care doctor with many seemingly random dramatic complaints affecting unrelated organ symptoms, which often feature prominent psychiatric symptoms, they are often thought to be suffering from a psychosomatic condition, i.e.” its all in your head”. They are commonly sent home with a prescription for an anti-depressant or anti-anxiety medication, which not only is experienced as invalidating, but does not address the root cause of their symptoms.
A number of patients with histories of head injuries have consulted me recently with symptoms of MCAS triggered by trauma to the head. Identifying MCAS as the source of their symptoms has important treatment implications and can speed recovery.
Mast cells are white blood cells that are part of the immune system and function as a bridge between the immune and the nervous system, acting to coordinate the two. Their primary function is to defend against toxins and infectious agents. Mast cells can be found in all tissues of the body, but the highest concentrations are located in those parts of the body that interface with the outside world, and are thus exposed to infections and toxins. These include the sinuses, throat, gastrointestinal tract, respiratory tract, skin and genitourinary tract.
Mast cells are filled with vesicles called granules that contain more than 200 different biochemical signalers. When a toxin or infectious agent is introduced, an individual with a well functioning immune system will mobilize their mast cells to orchestrate an appropriately measured response. The mast cells release their biochemical mediators, most prominently histamine, serotonin and tryptase, to neutralize the danger. If a person’s immune system has become dysregulated and hyper aroused, the mast cells can become over reactive. Instead of releasing their biochemical mediators in an appropriately self-limited way, they become disorganized and degranulate chaotically, causing the wide array of symptoms listed above.
Treatment consists of stabilizing the membranes of the mast cells so that they do not degranulate and calming down the nervous system.
For some patients, conventional over the counter anti-histamines can be useful, such as Claritin. Sometimes it needs to be compounded, because the fillers that are used can cause adverse reactions. Claritin is not helpful for everyone, and makes some people worse. Improvement may be immediate or can take up to two months. Another mast cell stabilizer is Quercetin 500 mg, a member of the vitamin C family. It is typically taken 30 minutes before meals, three times a day and before bedtime. A small number of patients do not tolerate it either. Another medication that can be helpful is Pepcid, an H2 blocker, starting with 20 mg before bedtime and increasing the dosage to twice daily if tolerated. All three can be used together. Other supplements which can be useful are Neuroprotek and Mirica.
There are natural substances that can be helpful such as Perimine, an extract of the perilla seed, Hist DAO which contains the enzyme diamine oxidase, 30 minutes before each meal, or Allqlear, a tryptase blocker, which is derived from quail eggs. It is also taken 30 minutes before each meal.
Prescription medications for MCAS include Ketotifen and Cromolyn sodium.
Some patients with MCAS benefit from a low histamine diet. I have written about this in previous posts. It is important to determine if this does in fact make a difference, because it is not healthful to restrict your diet unnecessarily. If you try it and do not notice an improvement, then do not continue.
In terms of addressing the hyper arousal of the nervous system, I often recommend Dynamic Neural Retraining System (DNRS). DNRS is an effective intensive experiential program which integrates components of cognitive behavioral therapy, mindfulness based cognitive restructuring, emotional restructuring therapy, neural linguistic programming, incremental training (a form of neural shaping) and behavior modification therapy to rewire neural circuits in the limbic system which calms the hyper active stress response. Some patients do not resonate with DNRS, and in that case Ashok Gupta has an equally effective program with a different tone that can be tried.
It is always critical to ask “Why does this person have MCAS?” in the first place. The answer is often that they are suffering from a chronic inflammatory response due to mold toxicity, Chronic Lyme Disease or Bartonella. Though treating MCAS is helpful for affording symptom relief, there is a need to address the underlying root cause in order for a patient to heal.
An exhaustive resource about MCAS is Lawrence Afrin MD’s 2016 book, Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemic of Chronic Illness and Medical Complexity.
Here is a great interview with Dr. Nathan where he discusses many of these topics:
Hello Dr. Tsafrir,
Thank you for this wonderful information and the work you do; it’s refreshing to see a holistic approach in psychiatry. I am educating myself about MCAS as I’ve only recently discovered it while researching the that symptoms someone I know that has had most of these issues; my own research is due to a frustrating lack of assistance from multiple physicians that are perplexed by these symptoms. My question is, do you think it’s possible that MCAS can cause a person to feel worse when they attempt to use adaptogens? They also seem to feel worse when they attempt to use intense herbs such as oregano for colds, though they don’t seem to be having a herxheimer reaction, just vague symptoms of malaise that relent upon discontinuing adaptogens and herbs like oregano. I’ll be purchasing the book you mention here in your article. Thank you again for sharing this important information.
It is very possible that there is an intolerance to the adaptogens or herbs that cause mast cell activation and they then release histamine and other bioactive substances that cause the person to feel ill. When a person is extremely sensitive, they can literally have a mast cell reaction to drinking water. I know it sounds quite strange but it has to do with limbic system reactivity. People like this are in need of limbic system rehabilitation through programs like GUPTA or Dynamic Neural Retraining System.
can extreme heat cause this and if so should one limit their time outside? (lots of sun, etc?) what about extreme cold?
It can be caused in some people by even drinking a glass of water! Some people’s nervous systems have become so reactive. The most effective approach is to first treat the Mast Cell Activation and then look for underlying causes. Avoidance becomes impossible in some situations.
Hi!
So is it a possibility that childhood trauma can be the root cause of MCAS? If so how does that happen? Thank you!
Hi Danielle,
Childhood trauma or adult trauma can cause MCAS through dysregulation of the limbic system of the brain and the vagus nerve. The person is then in a state of chronic overstimulation of their sympathetic nervous system, which means they are always on high alert, a state of fight or flight rather than rest and digest. This creates enormous stress and activates the mast cells. There are many other causes of MCAS besides trauma, including toxins such as mold or infections such as Lyme disease to name a few.
This is a good article. Thanks for sharing!
What do you do when you are clinically diagnosed with MCAS but you stop responding to the typical treatments? How do you treat it when the root cause is PTSD or old trauma?
I recommend to many of my patients with MCAS, whether or not they have a trauma history and would qualify for a diagnosis of PTSD, to make use of Dynamic Neural Retraining System to calm down their autonomic nervous system. It is very helpful for mast cell activation. Here is a link to their website: https://retrainingthebrain.com.
If MCAS is induced from Bartonella or Lyme, can it be cured? I’ve heard MCAS can’t be cured, but what if it only recently came about because of Bartonella?
MCAS is a symptom of an underlying condition that is triggering it. It could be Bartonella or Lyme, or very commonly mold, but also as a result of trauma, cumulative stress, or a car accident. There are so many potential underlying causes. MCAS resolves when the underlying cause is addressed and when one calms down the limbic system. In my practice, in addition to mast cell stabilizers, I recommend Dynamic Neural Retraining System to all patients with MCAS, as it calms down the autonomic nervous system. The mast cells participate in a feedback loop with the limbic system, so that the more activated and stressed we feel, the more that it activates our mast cells, which is turn causes increased anxiety and stress. We all have mast cells all over our bodies, but it’s only when they are dysregulated and over activated that they present a problem. I do think that it is possible to calm them down and no longer suffer the symptoms that result when they are dysregualted.
I stumbled onto this information. I have been having most of the symptoms of MCAS and didn’t know what my problems were from. Every Dr I went to wanted to put me on anxiety medication, which I refused.
Your experience is, unfortunately, the rule rather than the exception and it really is a disservice to patients. Anxiety medications often produce dependence and have lots of cognitive side effects.
Thanks for the great post any particular recommendations for MCAS brought on by a head injury? Aside from the ones you’ve already made I mean… thanks again
There is a chiropractic technique that is helpful for people with head injuries. Its called Axial Stability Method. There is a clinic in my area that offers the treatment. Here is a link to a page from their website about it. https://lydiancenter.com/?services=asm-chiropractic
Is the article saying MCAD can be caused either by head trauma – or by mold toxicity, Chronic Lyme Disease or Bartonella?
In my case I had a head trauma and possibly mold exposure, so where would I start?
It makes sense to try and relieve your symptoms first with a protocol to stabilize mast cells while at the same time trying to determine the cause. Mold is a very common cause of mast cell activation. Stress reduction, a whole foods organic diet, low in histamine if that is useful, supplements, DNRS, LDN, safe use of technology, all of these can work together and are helpful.
Thanks! I probably don’t have MSAS then, as I do all those things. Is there a cut and dry test to rule it out for sure?
You may be doing all the right things, but you may still be having an issue. There are expensive specialized tests that require all sorts of special handling and only certain labs know how to do handle the specimens properly. Dr. Larry Afrin, an expert in mast cell disorders, does order these tests, but they are in my mind beyond the scope of the average practitioner to access and to ensure that the tests are properly performed and the results valid. I believe that it is sufficient to make the diagnosis clinically, and to implement appropriate treatment.
thanks again. i’ll reach out to dr. afrin.
Thanks for this interesting post! It seems many people may be suffering needlessly from MCAS, so it’s terrific that you’re raising awareness.
It does make such a difference to know what the problem is and to know what can be done. It’s so demoralizing when no one can tell you why this is happening or what you should do. That feeling of helplessness is a trauma in and of itself.
I always appreciate and learn from your posts. Dr. Nathan’s new book has become my trusted guide as I begin to detox mold, ever so slowly. It has been 25 years since I was catapulted into a huge, injurious detox after inadvertently rebooting my nervous system, taking my first antidepressant.
So glad they are helpful. Dr. Nathan’s book is a great guide.
Thank you for your post, really interesting. Jennifer Brea who made the documentary on ME called Unrest, lists MCAS as one of her symptoms https://medium.com/@jenbrea/cci-tethered-cord-series-e1e098b5edf
Thanks for writing and sharing this resource.