• Dr. Lawrence Afrin, Dr. Tania Dempsey

Ask the NYC MCAS Expert: Mast Cell Activation Syndrome Questions Answered


Is there any correlation between MCAS and seizures or seizure like activity? If an EEG is done, should there be anything specific looked at in MCAS patient?

I know of no studies identifying any findings on EEGs which are specific to patients with mast cell disease of any type. Also, though I don't know of any "correlation" between MCAS and seizure or seizure-like activity, both seizures and activities which are seizure-like but shown by EEG not to be true seizures (i.e., so-called pseudoseizures) can be seen in "association" with MCAS (and other mast cell diseases, too). It seems "more likely than not" that the development of seizures or pseudoseizures in a patient with proven mast cell disease is related to the mast cell disease, but it must be kept in mind that there are many potential causes of seizures and pseudoseizures. Therefore, it is important for patients with proven mast cell disease who also develop seizures or pseudoseizures to undergo appropriate evaluations for those neurological issues to make sure that other, non-mast-cell-disease-related causes are ruled out to the extent possible before more seriously considering the possibility that it is the mast cell disease which is driving these neurological issues.

Can you explain how mast cells and Eosinophils interact? Is it possible high eosinophils as in Eosinophilic esophagitis are cause by something other than eosinophils themselves?

An entire book could be written on the subject of how mast cells interact with any given other type of cell. Suffice to say that there are many mediators produced by mast cells which can have a wide variety of effects on eosinophils, and, conversely, there are many mediators produced by eosinophils which can have a wide variety of effects on mast cells. There are many potential causes of increased numbers of eosinophils. The cause of eosinophilic esophagitis (EoE) is unknown in most such cases. It is possible that a mast cell disease might be the cause of EoE in some cases of EoE, and it is possible that an eosinophilic disease might be a cause of mast cell activation, but I am unaware of any published research which has identified what proportion of the population with EoE (or any other eosinophilic disease, for that matter) has an associated state of mast cell activation. I am wondering what your thoughts are on the microbiome-mast cell connection. Many patient’s symptoms start with severe GI issues - heartburn, bloating, gas. Wondering your view on chicken or egg - is it a dysbiosis triggering mast cell problems or the mast cell problems triggering GI issues?

Dr. Afrin co-authored a paper in the journal "Clinical Therapeutics" in 2015 on this subject. In short, it is essentially inescapable that there are interactions -- many of them, probably -- between the microbiome and mast cells, and it is Dr. Afrin’s personal suspicion -- not proven or disproven (yet) by any studies -- that a primary mast cell disorder leads to a secondary dysbiosis more commonly than a primary dysbiosis leads to a secondary mast cell disorder. Beyond that, the research needed to untangle this very complicated situation simply hasn't been done yet. Of note, in many patients who appear to suffer the effects of chronic mast cell dysfunction, a history consistent with that dysfunction can be traced back to a point long before gastrointestinal issues emerged, a situation which still doesn't *prove* the case of a primary mast cell disorder driving a secondary dysbiosis but nevertheless does "suggest" such a relationship.

Do you have insight into the possible cause of persistent, severe, migraine headaches in adolescents with POTS and MCAS or recommendations when all standard migraine treatment has failed? MRI is normal. (No sign of Chiari malformation or obvious EDS.)

There have been some intriguing studies published in the last several years demonstrating specific mechanisms by which mast cells might primarily drive, or at least significantly contribute to, headaches, but they all boil down to (1) presence of mast cells in brain and surrounding meningeal tissues, and in blood vessel tissues, too, and (2) production by mast cells of assorted mediators which can directly or indirectly cause pain, swelling, and changes in blood vessel caliber (i.e., can dilate or constrict blood vessels). Magnetic resonance imaging (MRI) studies usually cannot reveal any signs of these microscopic abnormalities, although some patients with mast cell disease are sometimes found on brain MRI scans to have very tiny foci of inflammation sparsely scattered about their brains, and it's *possible* -- probably not provable, but nevertheless possible -- that such findings might be due to the mast cell disease in those patients.

I'm curious to know if anyone with mast cell activation disorder has had an increase in immune pathology or long term mast cell reactions after having a vaccination. I know vaccinations are a hot topic and controversial, but it seems to me that there might be a strong likelihood that a reaction may occur which is higher than the average reaction in the general public. What has been your clinical experience? Can you comment about vaccinations and mast cell activation disorder?

Yes, some mast cell disease patients have experienced a permanent, significant worsening (or apparent initiation) of their mast cell disease in response to one vaccination or another. However, it must be remembered that vaccinations are not given idly. They are given to prevent diseases which cause severe illness and even death. Even "just" the flu virus *kills* thousands of people in the U.S. alone each year. Thus, vaccinations are *critically important* personal and public health tools, and nobody should lightly/casually make the decision to forego any recommended vaccination. Furthermore, it must be remembered that *most* people who get vaccinated (with any given vaccine) will have *some* (temporary) side effects from *any* vaccine product, but *very few* people who take any given vaccine will suffer serious side effects, let alone permanent side effects (or else, obviously, that vaccine would not have been approved for mass administration to the population). It also should be kept in mind that, at least with regard to the behavior of mast cell disease in any given patient, past performance tends to predict future performance. Thus, if a patient with mast cell disease has tolerated a particular vaccine product OK in the past, then that patient is likely to tolerate that vaccine product OK in the future. Even if a patient with mast cell disease has tolerated a particular vaccine product poorly, it may be possible to find an alternative formulation of that product which the patient may tolerate much better if the patient ever has to be vaccinated again against that particular micro-organism. Bottom line: although it's "possible" that a vaccine product can cause significant harm (just like it's "possible" that you could get run over by a bus while crossing the street today), the vast majority of people who take vaccinations do not suffer significant harm (just like most people who cross the street today will not be run over by buses), and vaccinations generally provide substantial benefits to individual patients and to the population at large, so a patient considering foregoing a vaccination should make that decision only after careful discussion with his/her doctor.

Dr. Afrin has stated that if someone’s urine was not stored at the proper temperature, the histamine dies off when exposed to heat and the test result will not be accurate. Mine was positive and am trying to get a confirmed diagnosis for which one I have. In the meantime, living with a rare disease and or diseases all my life and no one ever being to tell me what’s wrong with me until last year, I have now gone back and have to ask myself why do I have to sweat??!! I feel much better when I sweat so my question is if I sweat does that also kill of the histamine in my body when my body gets hot?? Or is that only when exposed outside the body?

For most compounds in the human body, the more heat to which they are exposed, the faster they break down. This general principle applies to histamine, too. Histamine is somewhat more tolerant of room-temperature storage than certain other mast cell mediators, but there nevertheless is *some* breakdown of histamine when blood and urine samples are not kept chilled, and since most tests for histamine are performed not immediately at the local laboratory but rather at a later time at some distant reference laboratory, it's probably better to keep specimens intended for histamine-related testing chilled for as much of the time as possible between the collection of the specimen and the final running of the test(s). Although histamine is normally present in sweat and there have been many studies investigating the amount of histamine in sweat, I am unaware of any research which has found a relationship between the total amount of sweat a person produces and the amount of histamine produced by that person's mast cells or circulating in that person's blood. There are many reasons why a person might feel better when sweating than when not sweating, but most of those reasons have nothing to do with histamine. It should be understood that how "well" somebody feels at any given time is the net effect of a very large number of factors operating in that person at that time, with the amount of histamine being produced in that person merely one of those many, many factors. Even if an abnormally increased amount of histamine is present in a person, it likely is the case that many factors other than histamine are contributing to how well or unwell that person is feeling at any given moment.

What is going on in the tissues surrounding and involving the joint space with mast cell degranulation? Does movement cause mast cell activation in the joints? When I use my hands they get painful and warm and flushed.(Dx by mast cell specialist with monoclonal mast cell disorder and inflammatory arthritis)

Many papers have been published in the medical literature about the effects of mast cells on joints. Mast cells can cause many effects in joints, both positive (when mast cells are working properly) and negative (when they are not working properly). One of the most common problems caused by abnormal mast cells in joints is inflammation; signs of inflammation include pain, heat, redness, and swelling. Yes, movement sometimes (not always, but sometimes) can cause activation of abnormal mast cells.

Can you explain bone, joint, and muscle pain caused by Mast Cell Activation Syndrome? Can prolonged untreated MCAS damage the vagus nerve causing gastroparesis?

Many papers have been published in the medical literature about how mast cells can (directly and indirectly) cause pain. It is not possible to review all of these research findings here. In general, pain caused by mast cell disease is the direct or indirect result of a wide array of mediators released by dysfunctional mast cells. The cause of gastroparesis is unknown in most of the patients who are found to have that condition. Gastroparesis is a common finding, too, in patients with mast cell disease, and while I *suspect* that gastroparesis found in patients with mast cell disease is due (directly or indirectly) to their mast cell disease, there have been no studies yet to prove a causative relationship.

I would really like to know why there is a "trigger" that causes MCAS? I mean I have had "signs" that I had it my entire life but I was in a car accident and the stress of that pretty much wrecked me. I could eat anything before the accident now barely anything. I have anaphylaxis to smells which I never did before. I know that is common for something to trigger the mast cells to go haywire (lyme or another illness, physical pain/stressor like my car accident) but why do you think that is?

It is the natural biological function of mast cells to respond to attacks of various sorts upon the body (triggers) by producing and releasing mediators which then influence other cells and tissues in the body to adjust their functioning as needed to help the body overall resist and recover from such attacks. As such, it is not surprising that exposure of *abnormal* mast cells both to things which ordinarily would trigger mast cell activation and to things which ordinarily would not trigger mast cell activation might result in abnormal patterns of activation of such abnormal mast cells. There can be many reasons why a mast cell might function abnormally. In some patients, there might be genetic issues. In other patients, there might be autoimmune issues. And there might be other issues in yet other patients. At present, our ability to identify *why* the mast cells are not behaving properly in any given mast cell disease patient is very, very limited.

Mast cell and Levaquin toxicity? I've got skin issues similar to psoriasis but flares up horribly. Do you know any connections?

Activation of both normal and abnormal mast cells can be triggered by certain antibiotics. Levofloxacin (Levaquin) does appear to be a trigger of mast cell activation in some patients with mast cell activation disorders (while other patients with mast cell disease tolerate this drug just fine), but I am not aware of any specific molecular mechanisms of action which have been definitively identified as explanations for how this happens in the patients who are adversely affected by this drug.

If you have additional questions on Mast Cell Activation Syndrome (MCAS), be sure to leave them on our Facebook page here. We will be putting out a new blog post every Friday answering a batch of randomly selected questions posted on our Facebook page.

If you would like to see a NY Mast Cell Activation Disorder specialist, Dr. Lawrence Afrin is now seeing patients in a private practice setting at our office in Armonk, NY. To make an appointment with Dr. Afrin, please call the office or contact us here

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