Frequently Asked Questions
1) I’ve done genetic testing, and I’d like to know what all those +’s mean. Are they related to MCAD? (Or: Oh no!/AHA! I've got the MTHFR!)
We all want research on rare diseases, genetics in general, neurochemistry, and a lot of other fields to be at Star Wars level, and instead, these fields still feel very much (especially if you fall into some particular subpopulations who need more answers, now) like they’re at Flinstones level. Many of your “plusses” might be shared with other people with these conditions...but it’s very unlikely any of them will change your treatment plan in any way, with the exception of some forms of B vitamins you might be taking in the case of MTHFR mutations. You’ll meet a lot of very excited people in support groups who come for advice because they’ve just found some of these. Most commonly, they’ve discovered they “have MTHFR.” In many of these cases, they’re in good company; they have the mutations that at least 40% of the population have and are perhaps going down the wrong research rabbit hole. Also, just like many other genes, “MTHFR” is a lot more complicated than B vitamin forms. You could be an over-methylator or an under-methylator, and well-intentioned attempts to “treat” the thing you found in your genetics results is, by my observation, about equally likely to cause an overcorrection or to go in the wrong direction to begin with and leave you in a much worse situation. If you have concerns about your profile, please seek the help of a qualified geneticist. Most of them won't feed you to their pet pterodactyl.
2) But my high heart rate. I’ve got to get that under control with beta blockers, right? It feels awful!
(POTS symptoms are often triggered by mast cell reactions.) No. This is in fact the only class of medication that, across the board, without additional mast cell meds to compensate for its action, is guaranteed to make any active mast cell disorder worse if it doesn't cause a more immediate problem. That miserable feeling you get with the adrenaline rush and doom and heart racing is from your body giving itself its own, much more complicated version of an epipen. In the crudest terms, this needs to happen so you don’t die. In essence, a beta antagonist prevents epinephrine from working, but not your body from producing these chemicals, and your body does not have an infinite capacity to do this. So while someone with allergies can just take an additional medication to compensate for the drug if they need epinephrine in the event of an accidental (and typically rare) exposure to an allergen, someone with an active mast cell disorder (assuming the drug does not kill them quickly) will just continue to fight the drug and produce more and more norepinephrine until they no longer can.
Fortunately, many other cardiac classes are able to address primary POTS and tachycardia of various kinds. (Naturally, if your high heart rate is a result of a mast cell disorder, instead, then it's probably the mast cell disorder, not the symptom, that you need to treat.) (See Treatment.)
3) I had skin testing, but I’m only allergic to…
If you have a mast cell disorder, this testing is (I know, expensive, and it made you sick, and still, it’s) totally inaccurate (at identifying allergens, as it’s supposed to, which you already know have nothing to do with your mast cell triggers). It’s also like playing Russian Roulette with several bullets in the gun. So please don't don't do that again. Blood tests, on the other hand, are accurate at identifying actual allergies and are safe. (Why didn’t you have those first? Because mast cell disorders are the only contraindication I’m aware of for these, and skin testing and allergy shots—also not an option for mast cell patients, by the way—are the main money makers of allergy offices.) Allergists typically do not treat mast cell disorders. There are, of course, exceptions, but if yours had you do a skin test, injected you with something, or told you come off of antihistamines, yours is clearly not one of these exceptions.
4) What should I do if I’m allergic to vibration/sweat/orgasms/sunlight/semen/my computer, and my doctor just doesn’t believe me?
Either your doctor is a doofus (This is a technical term. Find out here.) or your use of the word ‘allergic’ is causing them not to take your concerns seriously. While you’re likely having mast cell reactions to these things, they’re not true “allergies.”
5) I want to do this naturally and avoid pharmaceuticals.
I understand. Counting terms, I discovered I talk about supplements, lifestyle changes, and alternative therapies about ten times more often than I talk about pharmaceuticals, so I think I’m very much in this (pragmatic, holistic) camp. However, if you’re symptomatic and refusing appropriate treatment, especially baseline treatment with H1 and H2 antagonists, you’re likely not doing yourself any long-term favors. Particularly if you want to avoid the scarier kinds of pharmaceuticals, you should always prioritize preventing or minimizing your reactions to treating them in emergencies and keeping the resultant (often “hidden”) inflammation under control to all the cancers and other conditions systemic inflammation causes. Most drugs used in mast cell disorder treatment are not the scary kind. Even though many patients take several times the usual adult doses H1/H2 antagonists, for instance, they in most case process these without side effects (assuming they’re not reacting to excipients) because their bodies need them to deal with the onslaught of mast cell mediators released by inappropriate degranulation. See later questions about damage, cancers, and so on.
6) What’s up with drugs like benadryl, hydroxyzine, and phenergan?
These are first generation H1 antagonists. Find them in Treatment. They’ll likely be part of your plan for premedication and rescue meds. Ideally, they’re reserved for use this way due to pesky side effects, though many patients need them as part of their daily regimen. One reason why second generation H1 antagonists are the preferred place to start (with H2 antagonists, of course) for baseline treatment is because taking first generation H1 antagonists as often as is necessary would likely leave you very tired. Patients who need these stronger first gens are often advised to start by using them as their nighttime H1 to bypass this side effect.
7) My symptoms are always worse at a certain time of day. How is that possible?
There are a lot of potential reasons for this (timing of foods and other triggers and delayed reactions, buildup of lesser triggers, air quality, traffic patterns, activity patterns, and so on), but many find middle of the night reactions are especially common due to “mediator dump” around these hours (when mediators are highest). Adjusting the timing of your pm treatment might be helpful.
8) If I’m not having a panic attack, why do drugs like valium, versed, and ativan make my symptoms go away?
Because benzodiazepines are powerful mast cell stabilizers. They’re frequently used as premedication or rescue medications for this reason, in small doses, and some people need them daily (even considering the risk of dependence, which is more relevant with "regular" doses of these meds rather than those used for mast cell stabilization) for mast cell needs or for certain kinds of seizures.
9) But I really want do this with whole foods, because whole foods are always better than “pills.” I read apples are a source of quercetin. How do I do that?
Okay. To get the usual starting dose of quercetin from apples (Remember that quercetin, like everything else, is not for everyone. There are certain people with the COMT gene mutations, for example, who will not be able to use it at all, and it won't cover any part of even baseline treatment for these disorders.), I suppose you make sure you’re getting about at least two hundred apples in a day. This will quickly demonstrate what gastroparesis feels like.
10) But there must be a cure, right? I met a bunch of people online who were all better after cutting out gluten, dairy, histamine…
...who had, most likely, gluten, lactose, and histamine intolerance. The same happens with a number of infections whose symptoms may mimic a mast cell disorder. (See the page on conditions which mimic MCAD.) Many of these people also find past biopsies that identified healthy numbers of mast cells and mistake this for a mastocytosis diagnosis.
This isn’t to say that you won’t have to cut out gluten, dairy, or high histamine foods, especially if these are either triggers or are true allergens or intolerances for you—and they commonly are. But doing so won’t cure you if you have a mast cell disorder, and your triggers can also change.
11) I know I’m reactive to pizza (or something else). I just like to eat this sometimes. Or: I just keep slipping.
This isn’t like eating a donut when you’re on weight watchers. This is perhaps the most notable short-term difference between an allergen and a mast cell trigger for someone with mast cell dysfunction— allergy symptoms stop as soon as exposure does (those nuts are down the toilet or you’re away from the scent, and so on)...but if the culprit’s a mast cell trigger, it's likely to keep causing you problems, making those mast cells even more dysfunctional, days, weeks, months, and in some cases years later. So unless that double cheesy MSG pie is the sword you want to fall on, I recommend stepping away from the pizza oven.
12) I have lyme/bartonella/mold exposure/EBV (mono)/post-Covid/MRSA…
These are all common triggers for mast cell symptoms and can mimic mast cell symptoms, and your instinct says you should hightail it to your favorite nutritionist or naturopath or mold coach and down a bunch of herbs, get through the "detox reaction" (please see this question below), and go on your merry way, healing your pesky leaky gut while you’re at it, right? Unfortunately, if you are a mast cell patient, you most likely will not tolerate the most-used protocols for these underlying infections, even though (some, not all of) these protocols are great for the general population. A couple notable exceptions: If you have alpha-gal, you really will have to avoid the problematic meats, period. And if you are in mold, you really are going to have to get out of it. It’s very likely you do have mold hiding somewhere in your home, but this is not always to blame for symptoms. Yes, the remediation chemicals might cause you problems, too. Yes, many patients have lived in their cars for extended periods of time, or in tents in their backyards. No, they’re not crazy. So, especially if you know about some of your underlying conditions, you might consider safe options for addressing these once you are sufficiently stable on mast cell treatment (if you are a mast cell patient). Low dose naltrexone, for instance, has taken care of a lot of these nasty nesting things safely for many mast cell patients (See this in Treatment.) or other options, like subcutaneous immunoglobulins (lesser immediate risks than IVIG), which should always be done under the guidance of your qualified specialist, might at some point be right for you (...assuming these tests are accurate and you are not trying to attack something that is in fact universal to the human condition). (Also see questions below on "root causes" and "turning off" mast cell disorders.)
13) But I’m allergic to benadryl and every H1 or H2 I’ve tried. What can I do?
(Are you ALLERGIC, or are you HAVING INAPPROPRIATE MAST CELL RESPONSES?) Either way, have you had these all compounded in a safe filler for you? That benadryl wasn’t pink, at least, was it? (And are you sure it’s a safe filler for you? You didn’t just get microcrystalline cellulose or lactose, did you, you MC and lactose-intolerant person, you? This happens to a headache-inducing percentage of patients who think that just because they got their medicine compounded, it must have been in a safe filler for them.) The overwhelming majority of mast cell patient issues with antihistamines are due to excipient reactions. The other fraction of a percent are typically to fexofenadine. The same goes for many other drugs. Even in a hospital settings, many common IV drugs have preservatives or potentially triggering materials used in tubing, bags, and so on. Benadryl is also a reaction risk for the general population when pushed too quickly in an IV, which is sickeningly common. (This should be pushed over 30-45 minutes.)
14) But I was fine until pregnancy/menopause/a surgery/a really stressful time/a bug/a vaccine/some dental work.
I’m sorry. These are all also common triggers for flares or new or worsening symptoms (in addition to the stress of surgeries, drugs used, implants, fillings...).
15) What is EDS?
16) What is POTS?
17) What are other common comorbidities, subdiagnoses, and complications?
18) I don’t absorb B12, D, or any number of other supplements, regardless of how much I take, and there are some meds that don’t seem to do anything, either.
I’m sorry. Malabsorption and timing issues are extremely common with EDS, MCAD, and a number of other conditions like these. You will very likely need a different form of these supplements, like a sublingual or topical option, in order to bypass the gut, if you're not absorbing appropriately high doses of the most bioavailable form available for you. (Among meds, LDN in particular is almost always taken in these populations in either sublingual or topical preparations.)
19) But I heard some people have to get chemo. Is this cancer?
No (unless you're here for a mast cell leukemia diagnosis, in which case I'm sorry that this is not the right website for you). But it is a white blood cell disorder, SM is myeloproliferative, MCAD specialists are most often hematologists/oncologists, and there are some cases for which drugs like imantinib (Gleevec), Ayvakit, and others mentioned in this category on the treatment page are useful. If you’ve exhausted other therapies and your mast cell specialist (specialist, not familiar provider, but make sure you’ve found one of those first.) brings this up as an option for you, you should consider it, but this isn’t where you start.
20) I really don’t like everything I’m reading about cancer. Don’t something like one in three mast cell patients get cancer?
It’s true that about a third of the general population "gets" some form of cancer (In America, it’s over 40% of men and over 38% of women), so if you’re a human, yes, you run about this risk. But many cancers certainly do seem to be more common among mast cell patients. Why? Probably because of inflammation: mast cells acting badly sends inflammation running wild and does a great deal of damage in the body. This is just one reason why treatment is important.
21) But won’t those treatments cause cancer?
You’ve probably read some interpretations of some interpretations that are, in my non-medical-advice opinion, both misguided and very commonly misunderstood. But if you’re symptomatic and refusing appropriate treatment for your case, there are many reasons to assume you are dramatically increasing your risks of various cancers (as well as a lot of other, in this case likely preventable diseases which I recommend opting out of.)
22) I must have aggressive systemic mastocytosis, because I have a really serious case/my organs are doing weird things or it's "in" my organs!/My spleen's enlarged!/I have a gene! (I’m hoping I have MCAS, right? Because SM’s bad? That’s what everyone says.)
No. Not even a little. There is no way to distinguish SM from MCAS based on symptoms, and MOST serious/debilitating cases are MCAS, so this diagnosis is overwhelmingly more likely. Cases are always individual. There’s also no “good” or “bad” here. Either can be life-threatening, a minor inconvenience, or anything in between (though some ISM cases, which make up over 90% of total SM cases, are totally asymptomatic). MCAS is far more common, but keep in mind that in many cases, these diagnostic distinctions themselves make no difference at all in treatment.
23) I've been hanging out with a lot of people with my condition, and a lot of them aren't on any of these "drugs."
Please see the page on support groups. They can be wonderful, and there seem to be a lot of support groups which are just what they should be—supportive—and yet, for a number of reasons, they offer newcomers a somewhat warped picture of these conditions. This scenario is common: Kara has serious unaddressed symptoms. Frustrated her current medical team has not been at all helpful, Kara is happy to find hundreds of people, mostly online, who have cured symptoms just like hers, many of whom believe they have cured a mast cell disorder (and a few of whom, unbeknownst to Kara, are selling things). The real patients are all, usually justifiably, frustrated with their medical teams, the pharmaceutical industry, and just about everything they have tried. Some of their lifestyle suggestions may apply to Kara's case for a number of reasons, and Kara follows their paths, assuming she has a mast cell disorder she is treating in some sense "naturally," rejecting treatment (usually including the "natural" ones) and perhaps even trying therapies that might put her in danger or make her case worse. Kara does not treat her mast cells or really address them in any way, but she feels better because she’s in good company—none of these people treat what they identify as their dysfunctional mast cells, either. Kara might even improve because she’s improved her coping mechanisms or addressed other conditions with their suggestions. But then Kara finds herself panicking when, one day, her liver or kidney numbers come back showing signs of serious damage or she is diagnosed with a cancer or other condition.
It’s not Kara’s fault. Her experience told her medical professionals and pharmaceuticals, and anything else she'd previously tried in the way of supplements and complementary therapies that may have helped her case, are all a load of hooey.
It’s also not the support group’s fault. Most members are doing the best they can for their own medical situations, and they were trying to help. Most likely, the group's leaders are working their tails off to keep people selling things out of the group and to provide accurate information.
I want to say it’s not her medical team’s fault for not recognizing the need to look for more answers for her unaddressed symptoms, but it’s possible Kara's medical team was just a bunch of doofuses. I don’t know.
But now Kara, armed with an enormous amount of misinformation and confused correlations, will see a non-mast cell specialist of some kind, perhaps a garden variety oncologist. This provider will hear all the confusions and misinformation either unintentionally or intentionally passed along to her and will not take her seriously. They will not process information about her actual symptoms. They will not refer her to the specialist she needs to address her actual condition. They may, instead, write something on her chart that suggests she's suffering from a mental illness, which will encourage most other practitioners who read her chart, however wrong this may be, also to not take her concerns seriously and will make the likelihood of an appropriate referral and treatment even more dim.
It’s always important to advocate for yourself, to get misdiagnoses off your chart, and to dump doofuses. (Go here to help determine if you’ve found one.) And shame on Kara’s new provider for not handling this better, but also...even if you’re very familiar with mast cell disorders, imagine that your patient disagrees with all of the valid treatment options you are trying to offer them—their new online friends have told them those things don’t work or cause cancer, and they've got the "root cause" cures!, so they won’t accept anything that might help their acutal mast cell condition, they insist on doing X, Y, and Z, which are all very, very bad ideas, because they “know what they can do with their bodies,” and they’re not only insisting that you order an unnecessary bone marrow biopsy and CT with every contrast agent known to humankind to rule out “cancer,” but they assure you they’re going to take some charcoal rather than appropriate premedication beforehand and you’re only suggesting drugs because you’re in the pocket of the pharmaceutical industry and lifestyle changes because you are unsympathetic to their plight. You can empathize with this frustrated practitioner a little, can’t you?
24) I've called the compounding pharmacy, and my options for compounding my medication are cellulose (like Avicel), ginger, a probiotic, or beetlejuice. Which should I choose?
Every patient is different, but very possibly none of the above. Here is the social contract that governs relations between patients and compounding pharmacies: You choose and hire them. You needn't engage with terrorists. YOU and your medical provider (who writes this on the prescription) decide what your medication is compounded with. The pharmacy does not. If this pharmacy can't get in a tested filler that is safe for you, this is called laziness, and you probably don't want to be relying on them for anything but a phone call. Luckily, in most places, you can have compounded medications shipped directly to your door from other areas, and in some cases, even getting your medication from across the country will prove less expensive and more timely than going through a poorly-equipped or just plain lazy more local establishment.
For your options, perhaps the most common is rice flour, but that doesn't mean this will be the right filler for you. Most compounding pharmacies keep sucrose or dextrose (keep in mind these are very low quantities you would not expect to be a concern for most diabetic patients), olive oil, and silica on hand in addition their their usual celluloses, lactose, salt, and so on, and can order other things. Another thing to consider is the capsule, if you're planning to use pills. Usually, veggie caps (cellulose) or gelatin caps are carried. Some mast cell patients cannot digest either and empty capsules, but it may still be important to avoid using a capsule that is a trigger to a patient even if the capsule is emptied (with alpha gal, for example, gelatin may need to be avoided). This is a good thing to discuss with your medical practitioner and pharmacist.
25) Okay, so I got my benadryl compounded in just water and started it with just a drop, and I still reacted. What do I do now?
If it was in fact compounded in JUST water
1- You need to worry about things like mold, spoilage, and degradation of the drug, just like you would with anything else you put in water and wanted to keep for a while.
2- There is not a way to know how much benadryl you actually took in that drop, since there isn't a way to know how the benadryl was distributed through the water.
3- Benadryl can cause a numbing sensation (especially if you got a lot of it in that one drop of water!).
What might have happened is that it was compounded in water with a preservative, some thickeners or suspending agents, and other things like this. That would be more responsible, just a lot less mast cell friendly.
So, what else have you tried compounding in? Do you tolerate olive oil? Rice? Sugar? Silica?
26) But isn’t treatment only a “bandaid” or “escape” or just “masking symptoms,” not addressing the root cause? (I credit this question with most of my hair loss.)
Yes, everything used to treat any disease or to cope with anything, really, can be called these things. Mast cell treatment is a bandaid in the same way insulin is a bandaid for diabetics (it doesn't cure the diabetes), removing an about-to-rupture appendix is an escape from appendicitis (it doesn’t address why the appendix is infected), or the polio vaccine is a masking agent for polio (it only prepares the body to respond to polio so it doesn’t cause the damage it otherwise would). When your mast cells are dysfunctional, wrecking havoc in the body, mast cell treatment helps prevent this damage so your body can better function...which is what is needed before you can even start “scrubbing genes,” addressing underlying infections that may be contributing, "healing your gut" (or, you may find mast cell treatment and your body do this for you), and so on.
Frustratingly, I hear the words "mask symptoms" and "bandaid" often from likely well-meaning individuals who have been warned away from treatment. When an addict relies on drugs or alcohol as an escape from trauma, I understand this is a bad escape, likely to cause more problems...but when you take your H1/H2 antagonists, this is a helpful "escape"—of course, you recognize it as an escape from your symptoms, but it’s also an “escape” from the progression of continued degranulation which would otherwise be contributing to long-term damage to perhaps every major organ system in your body. Likewise, when an athlete takes a pain-reliever to mask the pain of an injury in order to continue competing, this may be problematic, ultimately causing more damage by allowing the athlete to continue the exercise without addressing the injury. Mast cell treatment, particularly but not limited to baseline treatment, is intended to prevent damage, not just make you a little less sniffly. (Please see questions on mediators below.)
This doesn’t mean you shouldn’t do what you’re able to address underlying conditions which might be contributing to your symptoms, deal with stress, figure out your triggers (These are all very important for everyone!) and use any number of complementary therapeutic tools at your disposal to treat your condition. This is what treatment is. That’s why there’s no magic, single-use pill we call baseline curement.
27) My diet's changing, or I'm taking some stuff to kill some stuff. How do I know if I'm having a detox reaction to something new, like an antibiotic or food, or whether it's a mast cell trigger?
“Detox” has become a buzzword that tends to be incorrectly invoked when we're really talking about one of any number of very different things. An actual detox response, a herxheimer reaction, happens when the body's pathways of detoxification (liver, kidneys...) are overwhelmed and become backed up. Waste products from bacteria, viruses, or fungi and their survival Hail Mary's can, over time, tax the body's ability to clear these toxins and lead to feeling sluggish or fluish as the body attempts to “catch up.”
A herxheimer reaction:
comes from consistent use of a product that that kills bacteria, viruses, or fungi or helps the body to target these infections, like LDN. (What people are referring to when they say their diet caused a “detox” reaction is usually that they suddenly started eating fiber, or in the case of juices, suddenly started getting a bunch of sugar with no fiber at all. Both will cause significant GI disruption that has nothing at all to do with detoxification. Likewise, what many people notice in the days after starting various "cleanses" (parasites, mold, "toxins") are actually very typical side effects of the herbs.)
always takes time. These pathways do not get backed up overnight.
feels like a gradual wearing-down (you may feel run-down, possibly even fluish, or, in the case of perhaps the majority of die-offs, you won't notice anything at all).
So if it happened within days (or, more often, a couple weeks or more) of starting the new thing, or if it started with significant symptoms, you may be suffering from an allergy, a virus, an infection, a mast cell trigger, or another totally unrelated issue, but you are assuredly not suffering from a detox reaction.
28) I get these weird symptoms sometimes, like I wake up and I'm absolutely panicking with this feeling of impending doom and I have this GI thing or I feel like I can't take a full breath, and...but my doctor says I don't need any rescue medications because I haven't had anaphylaxis.
There are few things more terrifying, biochemically, than that feeling of impending doom with anaphylaxis, but one thing that might come close is confirmation that there exists a licensed medical provider who doesn't know what anaphylaxis is or someone who claims to be a "mast cell specialist" who does not believe their patients should carry rescue medications. I'm sorry you found one, but you definitely need to replace them immediately. Most practitioners, even those who don't claim to know anything at all about mast cell disorders, are at least this competent, so I hope you never have this experience again.
29) I was prescribed a steroid taper in a little blister packet. Is that what people are talking about when they talk about tapering their steroids?
Well, that is technically a "taper," and those big jumps are just fine for many recovering from something like poison ivy or an allergy, but they're usually not going to cut it for a mast cell patient (and they frequently come with dyes, coatings, or other fillers that may be triggers, too). If this doesn't go smoothly for you, though mast cell patients do differ a great deal in this, think more along the lines of low dose steroids for a longer period and then a slow taper from there or a much slower taper from a higher dose, maybe closer to a milligram a day, rather than the 40-20-10-5-2.5-1...
30) I just had a surgery, or a virus, or something else, and now I'm really sick, but when I called my mast cell specialist, they said I've "maxed out" my medications. I'm taking two or three zyrtec and pepcid a day. I'm really miserable now and getting scared. What can I do?
The good news: You're not taking even a fraction of these classes' studied, recommended maximums for longer term use, and there are very likely other medications you can and should be prescribed during this time, as well. For example, your "specialist" should have prescribed you rescue meds, at the very least, with a plan for when and how to use them, when to increase your regular schedule, and so on.
The bad news: You're going to have to find a new provider. (Also, this is most assuredly not a mast cell specialist or a useful familiar provider.) Either this provider is basically competent and decided to tell you this lie because they did not actually believe you were experiencing the increased symptoms you described to them (and if you experienced some sort of trigger like a virus or surgery, they really should have expected this) or this provider does not have even the most basic information about these very elementary classes of drugs. In the first case, you don't want to put your medical care in the hands of someone who would lie to you or put you in danger. (That's the "First, do no harm," thing we're supposed to remember.) In the second, you can't educate this provider unless you send them back to school, and you don't have time to wait while they redo their medical education.
31) My GP/someone else who wants to help me is wondering what tests to run. I'm going to try mast cell treatment, and we know with MCAS there are a lot of things we can test that aren't very accurate/ we're not sure we have a good lab for. Are there any tests we should run now, to get started and rule out other things?
Yes! See the pages under the tab "For Medical Providers." There are a lot of conditions that can mimic mast cell disorders that may be important to rule out.
Hopefully, these tests will either come back normal or give you other options to explore that might also be important for addressing your symptoms even if you also have a mast cell disorder (or they may be responsible for your symptoms entirely). For example, if you're being exposed to something that shows in the IgE panel as a serious allergy for you, eliminating that might be the ticket, or if your total IgE number is high, in the hundreds, this might merit an autoimmune panel. If your IgE number is in the thousands, you might talk to your provider about screening for various hidden infections or the possibility of implants your body is rejecting (both of which can also trigger MCAD symptoms as well as mimic them). If your hormones are out of balance, this may be responsible for your symptoms on their own, be triggering a mast cell problem, or point towards another condition, and so on.
After you get the results of your baseline tryptase and other tests, it's likely that you'll have a better idea of what will be useful next in terms of mediator testing, biopsies, or other tests (or maybe nothing at all...maybe you've found the golden ticket already, in which case, hurrah!). Note that NONE of these tests are affected by antihistamine use, so it's not a problem to begin this while you're waiting for more information. Your GP can also go ahead and prescribe you regular treatment and emergency meds like epinephrine to have on hand in case it's needed. And kudos for finding a GP who wants to help you figure out what's going on!
32) I've been thinking of fasting for a while to give my gut a chance to "rest." When will I know if it's helping?
"Fasting" can refer to eating an early dinner and a late breakfast OR it can refer to longer periods, water fasts, or even as some people use to the term, to an era of "juice fasts" and poor life choices, so sometimes, fasting discussions become confusing. Beyond early dinners/late breakfasts (for some patients. Not all MCAD patients would do well with this, and in fact perhaps more of them need to eat as regularly as possible or on a particular schedule since various chemical fluctuations are triggers for their symptoms), all of this, from quick changes to long term deprivation of the foods you tolerate to "resting" your gut for more than perhaps 16 hours or so, is in a general sense ill-advised for a patient with ANY autoimmune, motility, or food tolerance condition, because 1) the gut is may lose all or many of the previously tolerated foods when the patient attempts to reintroduce them, especially after the stress of this big change, and 2) the gut will probably want to keep "resting." Remember, you have kind of a lazy gut. It was doing too much resting before. Putting it into something like a stressful coma isn't very likely to motivate it. Whatever that influencer says about cavemen, pre-mortem, your gastrointestinal tract was not designed to go on vacation or, in the case of some kinds of fasts, undergo extreme stress as its entire microbiome (and everything else in the body) are disrupted. Of course, this breed of fasting is also quite likely to be a mast cell trigger for you on its own. There's nothing wrong with putting the foods you usually would eat in tastier form in a blender for a period of time, or with juicing (reasonably) if you tolerate these sugar spikes, if you need some motility help or if you're particularly reactive, and many patients do need to do things like this sometimes when their gastroparesis or other symptoms are particularly severe. However, I don't think there are legitimate practitioners of any kind who would recommend anything like an intentional long term fast, a juice cleanse, or a gut "reset" to patients with any of these diagnoses.
33) I read something online about the carnivore diet being good for this.
I haven't seen this, so I can't say anything about the source or what it was referring to, but a carnivore diet is 1) extremely difficult to digest properly, 2) extremely inflammatory in practice, and 3) coincidentally, also especially challenging with respect to mast cell triggers. I recommend talking to your medical practitioners. Some mast cell patients successfully eat some meat. Some mast cell patients need some meat. For these patients, sourcing organic meat (chicken and bison seem to be somewhat common, for example), flash frozen (fresh), and eating meat very quickly after it's defrosted, as part of a balanced diet, are often important. Many more patients are vegetarians or vegans. Finding the diet that's right for you is key, but I would guess on the whole that this might be among the least likely fad diet to be that, and it has distinct, well-established disadvantages unrelated to mast cell issues if adhered to for a longer period of time (think hearts and nutrients- things you need).
34) I have some safe foods that I've been stable on for a little while, but now I need some other nutrition, and I've had such bad experiences with foods or supplements in the past that I'm scared to try anything new. Do you have any advice for how to get past this?
First, medical trauma is serious, and just being able to acknowledge it and know that it might be getting in your way is a huge step towards overcoming it, so a big kudos to you! Trying new things, even without having had these bad experiences before, can be very stressful, especially when you've been limited for some time.
On the foods themselves:
1) Choose single ingredients, one at a time, that you're most likely to do well with first. Don't pick the ingredient that sent you to the hospital or showed up with giant flashing red lights around it on your IgE test (Let that one go with gratitude or whatever you like...but let it go.). Aim first for often tolerated ingredients that maybe you cut because you weren't quite sure if they were contributing to your symptoms or not, or just something you used to tolerate that you haven't had in a while.
2) Start SLOWLY. This is recommended not only so you're more likely to catch a little reaction and stop it than you are to eat a full heap of mast cell terror and be in over your head. It also increases your chance for success because mast cells aren't very keen on surprises. If you were friends with a mast cell, the worst thing you could do is throw it a surprise birthday party. So if you're going to try that organic apple, cut it and smell it, rub it on your skin, lick it, use a fork to take a tiny sample, and so on. Do it over days or weeks. If you need a supplement, med, or something else like this, empty a little of it into a glass of water (take apart the capsule, crush the tablet, stab that sea buckthorn bead like it's a Capulet and squirt it into the glass), sniff, swish a sip around in your mouth and spit it out, let the next sit in your mouth for a bit, take a small sip... You don't get any points for speed here.
3) Have someone around, and have your rescue meds available to you, not necessarily because you'll need them, but because if you're ever unsure or have a moment of worry, scrambling is never a help. No one available? Maybe you could go hang outside of a coffee shop or restaurant with a patio close to a hospital, with a medical alert bracelet or other instructions with you, for peace of mind. If your practitioner thinks at some point that some foods are best for you to try in the office or very close to a hospital/in the waiting room, bring a friend, watch some funny videos on your phone or tablet, and try to make some fun of it to stay as relaxed as possible.
On the other things you can do:
1) Muscle test (with the help of a friend or partner), douse, or just leave the thing you're trying next out on the counter as you're getting ready to start this process so you can sniff it or hold it in your hand when you go by and visualize it being a good thing, something that's going to help your body rather than hurt it. The more you can think this, the more sources of confirmation you can get that this is going to be a victory for you, the less stressful this trial will be and the less likely that a stress response will throw it for you.
2) Try tapping (EFT) and meditation, and consider distraction so you're not thinking about and expecting symptoms as you go through this process. Maybe you could have a favorite (happy-leave the dystopian drama or serial killers dropping down from ceilings out for now) book or TV program to be focused on each day as you work on getting your thing back. It may seem silly, but it can go a long way in helping this go smoothly.
3) Get whatever support you need- from friends, from mental healthcare providers who specialize in overcoming medical trauma, from support groups, from family members...from whatever the best of your circle is. You should have access to every resource you need to overcome the trauma and anxiety elements of this, and you deserve to have people cheering in your corner, commiserating when things are a little slower than you would like or there are setbacks and celebrating every little victory you have- you've earned them.
35) I'm just having so much trouble with this new diagnosis. When you all talk about how I need to avoid my triggers, I'm trying, but I can't just give up my life. I'm young, and I need to LIVE. I need to go to the store, do my laundry, and go out with friends to bars sometimes, and I don't know what I'm supposed to do because I just keep getting worse.
How you choose to live with any diagnosis is and I believe should be entirely up to you, so long as you have the have the information to understand the choices you're making. Right now, I'm sure the changes your new specialist is recommending are all pretty overwhelming, and you're probably having a hard time imagining your life with them. I recommend reaching out to your friends, family, support groups, and mental healthcare providers to help you sort through this. You'd be surprised how many solutions you might find and how much easier it is to deal with an out-of-the-blue diagnosis when you have the resources to do it well. For example, on the stores...Do you have grocery delivery? Pickup? Amazon? Vitacost? If you have big triggers in stores, some good news about the times is that in many places in the world, you no longer need to go into these kinds of places, ever, even if you're on your own and have no help available to you. Or maybe for some places, you might have a good mask that works well enough for you. On the laundry, sure, getting rid of the Tide and the Downey might be a bummer, but you can probably find a detergent or laundry system that you tolerate if you do a little digging and ask for some suggestions from others. Also, your option is a lot less likely to be full of neurotoxins and cause you a lot of other serious issues. And on the friends, have you tried just not drinking the alcohol while you're at a bar? Or if you're reactive to it in the air, have you checked out any outdoor bars? Or maybe you can enjoy some quality time with your friends that's not at a bar. You're not selfish for not wanting your life to change. You didn't ask for this diagnosis. But while there are likely some changes you will need to grieve in your life (I'm not saying you should embrace toxic positivity, either.)--just like with any diagnosis, and just like with any life change, even the ones you wanted, like growing up--I recommend you don't just start indiscriminately grieving everything you think might be different. Some things may seem like obstacles now that aren't, that aren't as big as they seem, or that might even introduce you to a better way of doing things.
36) What is a mast cell "mediator?"
Mast cell mediators are chemicals mast cells release when they're degranulating. Your mast cells should degranulate for a variety reasons; they play an important role in the healthy body's immune system. Mast cells degranulate when they see an invader like a virus or a bacteria or when there's an injury, releasing mediators like histamine, prostaglandins, heparin, leukotrienes, and others in order to cause inflammation and bring more blood and immune cells to the area to fight off the invader or to heal the injury. Unfortunately, with MCAS, your mast cells are prone to misbehaving or exercising poor judgment, setting off this alarm when they encounter things like pizza instead of things like the plague.
37) When you say treatment can prevent damage, what do you mean? Don't those medicines like H1 and H2 antagonists just work by stopping symptoms, and not by doing anything to the mediators themselves?
Mediators are only designed to "live" about long enough to call for more help to the area (that's why they're hard to "catch!"); they're like throwing a little blood into the ocean to call over some sharks (you can see it at first, but it quickly dilutes, and all it does then is call sharks), if you had a reason to call over some sharks to help you with something. These mediators cause inflammation, but it's temporary and limited. It's when, inappropriately, or for bad reasons, more mast cells can be called to the area to degranulate, and more alarms are set off telling mast cells in other parts of the body to degranulate, and this process goes on and on, that your little boat that can't stop dumping blood into the water accidentally attracts the Kraken. Histamine 1 and Histamine 2 are important pathways for calling in reinforcements. If you block enough of these to limit this "communication," if you will (what you want your mast cells to say is "We're fine over here. There's nothing wrong with this pizza." What you do not want to your mast cells to say is "Pizza! Send in the Kraken!"), these mediators won't do much at all, and while you might attract some sharks nearby, they won't start a chain reaction that leads to calling in everything hungry in the entire ocean to come decimate your boat. Maybe you've heard this referred to as a "spiral," where you set off some mast cells here, and they call for more mast cells, which set off mast cells there, and there, and there, and...more alarms keep going off, more calls for reinforcements keep being placed, and your body is at war, for days, weeks, months, or years, and doing a lot of collateral damage in the meantime, even though that war started with a very good slice of pizza that has long since exited the body.
38) Some of these triggers seem almost unbelievable. Someone/my friend or family member with MCAD told me that they were severely reactive to something like just a mosquito bite, their own sweat, the weather, a really exciting announcement or a stressful situation, their partner's semen, or sexual intercourse. Could that really be true?
Yes. These are not at all surprising.
39) I'm treated by a "familiar provider" like described on that page, but how do I know if/when I need to see an actual "specialist?"
The overwhelming majority of patients will be best served by a practitioner of any kind who is willing to learn about the disorder, monitor the patient's symptoms, and treat them accordingly. In the case of SM, however, in order to monitor marrow and any changes in staging, this will need to be done at least with the assistance of a qualified hematologist. Most patients don't need someone researching. They don't need someone publishing. They don't need someone with thousands of other mast cell patients. As you go through the process of finding the right treatment plan for your case, you might think of seeing a specialist if you find that you've exhausted the baseline and second line treatment options (by "exhausted," I don't mean base doses of these things, but the doses that are appropriate for you case. I meet a lot of people who have "exhausted" their H1/H2 a couple times a day, for example, and either have not tried others or have never been told to increase these, and the same with other drugs.) and need to consider third or fourth line therapies, feeding tubes, TPN, or regular medications delivered intravenously. Your general or other practitioner may feel less comfortable in these areas, while a specialist who sees many patients like you will have more experience with helping you choose and monitor these kinds of treatments.
40) Can I safely get pregnant/harvest an egg/carry a child to term, or will this make a mast cell disorder/related conditions worse? Also, are these disorders genetic? What are the chances that my child will have a case like mine?
On the pregnancy/eggs/carrying a child: I of course can't answer this for your own case and strongly recommend you discuss this with a mast cell specialist (a specialist, not a familiar provider) and a high risk obstetrician who deals with several patients in this population. In general, hormonal fluctuations, especially quick or dramatic ones, periods of extreme physiological stress, and surgeries are among the most common "big" triggers that incite initial or worsening mast cell symptoms. Some patients find pregnancy unsuccessful or debilitating. Others carry children safely, or even feel more stable during this time than they usually do, if other hormones are their triggers, but their condition may worsen significantly afterwards (another time of dramatic hormonal changes and, in case you aren't yet aware, just procuring a baby human tops the list of stressful life events.) With POTS or other dysautonomia, vasovagal issues are more common during pregnancy for many patients. With EDS, hormonal changes themselves may also be challenging, but more worrisome tends to be the effects of relaxin, a hormone secreted later in pregnancy that relaxes connective tissue throughout the body, as with faulty collagen production, EDS patients are less able to repair or reverse these changes and maintain connective tissue integrity throughout their bodies. For this reason, generally, EDS and other connective tissue patients, assuming heart (aortic) conditions are not of more immediate concern with a pregnancy, are known to be at greater risk of cervical incontinence and especially later term miscarriages, uterine rupture (a risk of fatality to the mother, as well as to the child), prolapsed organs, and general worsening condition.
On the genetic basis: Yes, certain variations in one gene have been identified in most mastocytosis patients (others are also very likely), and MCAS and trifecta conditions in general strongly run in families (EDS, HAE, HATS, and certain forms of dysautonomia are all genetic disorders, though the genetic test for the most common type of EDS is not yet widely available). It's relatively rare to find a symptomatic patient whose family history is not indicative of the presence of one or more of these disorders, though it's common to find that earlier generations presented with less serious symptoms than do later ones. There could be a number of environmental and other reasons to account for this, and likely are, but I'm not the right person to speculate about them all. Keeping in mind the diverse makeup of support group participants (see this page) and other anomalies which may skew the results of this poll, you might still get a more complete picture of other patients' and their children's experiences by searching for this question in one of the larger online support groups.
41) I have a necessary surgery or dental procedure coming up. What do I need to know?
You should discuss your individual case with your specialist, who should discuss with your anesthesiologist and others involved in this, but in general, if this is a necessary procedure, the answers to these questions are likely to be important for a mast cell disorder patient:
1) What kinds of medications need to be used in this procedure? Which options for these things are best for me? Which needs to be avoided? If I'm in pain afterwards, what pain control options do I have? Are there risks of infection, and are there antibiotics I tolerate that will work to address this?
2) What materials will be used this procedure? Does it involve something left in the body? Topical surgical preps? Stitches? You may need to source alternatives for all of these things. For implants or dental materials, you can test your "biocompatibility" with various materials in blood and pick up samples to try on your own of these materials, as well as of things like wound care products to help determine what you might best tolerate.
3) What does the procedure itself entail? How will my mast cells be managed during the procedure and with any other triggers I encounter afterwards as I'm recovering (and my mast cells are (correctly) fired up trying to help me heal)?
4) What premedication plan is right for me, and when and how should these medications be administered? How will I be monitored and these medications administered afterwards?
42) But I'm living proof that this isn't how you treat MCAD! I had condition X, and it caused my MCAD, and now that I cured my X, without mast cell treatment, I don't have MCAD anymore. Why are you people always hiding cures like this from the public when you should be recommending them to all your patients? I keep telling people that if they just fix their X, they can turn off their mast cell disorder!
That's wonderful news! But if you evaluate the symptoms of X, it's very likely that these mimic the symptoms that led you to be diagnosed with MCAD (that X is or should be listed on this page), and if you did not require mast cell treatment (and typically also other changes), as well, and still don't, this is the best confirmation you're likely to receive that your symptoms were a result of X and not a result of a symptomatic mast cell disorder. See this page.
However, if you cured your X, even if this is the thing that triggered your worsening or original MCAD symptoms, and these symptoms improved, but you needed mast cell treatment and (most likely) still do need mast cell treatment, that's extremely common for mast cell disorder patients (There are a lot of pesky X's out there that need to be addressed, too!). So know that you're in excellent company, and it's good that you got your X taken care of.
Either way, I'm happy for you! But it wouldn't be right for me to suggest that the thing that may have triggered the initial appearance or worsening of any patient's mast cell disorder is the same thing as the mast cell disorder itself or that their mast cell disorder could be resolved by addressing these so-called “root causes.” If you want to blame a true “root cause,” blame genetics. For many patients, there are a number of potential “big” triggers that may cause the initial appearance of symptoms and precipitate the need for treatment, but keep in mind that these same triggers do not precipitate a mast cell disorder in millions of other patients without this predisposition, and regrettably, “turning off” a mast cell disorder isn't so easy. It's not a Nintendo. (See question 47.)
43) My "specialist" told me because my tryptase is normal/not that high that I'm okay. Is that true?
Tryptase is not indicative of disease severity. There are very high risk patients with a tryptase of 2 and patients who live very normal lives with tryptase of 300 (in many cases who also have HATS). Tryptase is, however, somewhat predictive of SM staging for SM patients or can point towards HATS.
44) Someone tells me I need a CT to diagnose this. What's the premedication I need?
First, there is no radiology procedure of any kind that is involved in any element of initially diagnosing any kind of mast cell disorder. Mast cells are not visible in radiology images, and nothing that can be seen in any radiology image is specific to a mast cell disorder. If you need a CT or other radiology procedure to diagnose or rule out some other condition, the usual recommendation is to:
1) delay these procedures outside of emergency or more urgent needs during the initial process of diagnosis, establishing treatment, and identifying your triggers,
2) to premedicate appropriately (see this) and take any other needed precautions, and
3) for most patients, to avoid the use of contrast agents.
Ehler Danlos or other connective tissue disease patients with particular cardiac concerns are often ordered a contrast-free echocardiogram (for which premedication is often also recommended, though in this case no radiation or as significant an electromagnetic field is involved; vibration may be a trigger) to rule out aortic aneurysm or other structural abnormalities. Note that the presence or absence of these concerns is not relevant to MCAD diagnosis, and if these provide a reason for, for example, symptoms like an irregular heartbeat, this would be attributed to its structural cause and not count towards an "otherwise unexplained" symptom in a particular organ/system as pertains to MCAS diagnosis.
Thinking about organ enlargement in later forms of SM? Note that these involve palpable organ enlargement (you can feel them), and would only possibly be a consideration well after initial SM diagnosis, when you already meet the criteria for SSM.
45) I know tryptase isn't usually relevant to MCAS diagnosis. So why is my provider wanting to test my tryptase? Is this a red flag that they don't know what they're doing? Someone told me so.
If your provider thinks you don't have MCAS because you have low tryptase, whomever told you this is right; they definitely don't know what they're doing in this arena. However, it's strongly recommended to test tryptase anyway...not because it's always relevant to MCAS diagnosis (Sometimes it is. A slight increase with symptoms or decrease without in an otherwise normal tryptase level can be one way to help confirm this.), but because it's very relevant to ruling out certain forms of SM and some other conditions which can cause the same possible range of symptoms. Depending on your level, it might be important to test tryptase multiple times to better identify your baseline. And it's just a blood test that you can have drawn at the same time as your regular or other recommended bloodwork. (This one's not risky.)
46) I've finally found a specialist who offers comprehensive testing and treatment plans and has all the right information on their website, so I know they know what they're talking about. They might have given/sold me some other things, too, but they recommend some infusions of mast cell treatment meds (say, for example, quite common IV meds like diphenhydramine (Benadryl) and benzodiazepines) to kick start things and make me better long term. If you can make people better faster and actually "turn off" the disorder by giving IV infusions of these meds, why do you keep recommending the same old complicated processes with drugs, supplements, lifestyle changes, and therapies day in and day out? Don't you want people to just get better, now? Also, I met someone online who saw this provider and had a reaction to/after an infusion. It was just Benadryl or whatever! (see list of ingredients with methylparaben) Do they have a psychosomatic case or what?
1) Because you can't. That's not how these meds work. The half life of diphenhydramine varies by age, but it's a matter of hours. Benzodiazepines have different half lives depending on the drug, and they're typically given in very low doses for mast cell uses (which is to clarify that I have no idea where these numbers come from. Perhaps a decimal point was moved? More is not better. This is not a cowbell situation.). These drugs, often in IV form, are both essential rescue medications for patients experiencing serious reactions and are regular medications for some patients, as well. What does taking them when you're not having a reaction do? Well, ideally, nothing at all. There's nothing for it to help at the time. (Less ideally, it contributes to tolerance...which is why it's usually recommended you do not use them if/when you don't need them...risks reactions with tubing or other ingredients, risks these and other, sometimes more complicated problems with benzodiazepines themselves, and so on). Receiving them in an IV doesn't make them magically keep working, calming reactions in the days, weeks, months...afterwards (because I've gotten this question with a few very different timeframes suggested between treatments which do not immediately appear to be related to symptom severity or to anything else I can identify. I would hypothesize that greater frequency is correlated with greater ability to pay and travel to the clinic. None mentioned being told to simply visit their local emergency rooms to receive the same drugs, which might ultimately prove less expensive, either.).
2) Had you not mentioned that methylparaben (preservative), I'd have asked if perhaps the diphenhydramine were pushed too quickly (because if we're giving this provider the credit of being honest, if they don't know on a basic level how the med works, I can't imagine why we should expect them to know how to push it), if there were issues with tubing, with the benzo, with....but you know, that preservative does just seem to want to jump out. (Am I such a hypocrite, then? You happen to know that I keep Benadryl on hand! Is mine preservative-free? I hope I'm not a hypocrite, and why, yes, it is, and for good reason- I'd expect a great number of mast cell patients to be reactive to methylparaben.)
But why would they offer this service, then? Setting aside my fussbudget concerns about doing harm (tolerance/risks), because these are mast cell medications (ignoring HOW and WHY and WHEN they're effective, appropriate, and so on), this is not illegal, and...respectfully, because you were willing to pay for it.
47) But I know what "turned on" my MCAS. There HAS TO BE a way to address that, to flip the switch back and turn it "off!"
If only your body were a Nintendo or a light bulb! There are things that "trigger" a number of other conditions, too, which also don't have simple "off" switches, and so far, no progress on that time machine.
...but what if I told you there IS often something like a switch? It's not a fast one, and it's not always a complete one, but maybe we could say it's a very slow dimmer switch with some ups and downs that works to some extent for almost all patients and can get to looking pretty "off" for many, too. You'd want to hit that switch, wouldn't you? Well, it's...drumroll...mast cell treatment! (See questions 36-37.) Treatment for any mast cell disorder is aimed at helping patients stabilize this condition over time, "calming" the disorder (since this is the word that seems to pop up most often) and turning it "down" while helping to prevent worsening of the condition and collateral damage. Some patients no longer need treatment after years of stabilizing or only need treatment rarely (you might say it "worked" like you wanted it to). Many others will always require some treatment...but patients needing ongoing treatment, as for any number of other common conditions, isn't the tragedy here. The tragedy is the number of patients who do irreversible damage to their bodies by either not getting adequate medical support when they could have prevented a great deal of future medical strife or refusing adequate treatment for their condition, and, if the disorder is not what ends or limits how they can live their lives, they in the process "turn on" any number of other conditions that will. (But what if they could have just addressed the CAUSE?!)
I understand why you want the golden ticket. I "get" that you want your life to go back to "normal." Now that you've identified a trigger (and maybe you even know people who suffered from this trigger, treated it, and no longer were symptomatic...because they had X or Y, and for THEM, this did not ALSO trigger a mast cell disorder. Remember, nowhere near everyone or a majority who experience things like lyme, mycotoxin illness, MRSA, menopause, Covid-19...."gets" a mast cell disorder. It may be difficult to find a human being today who does not have some parasites, bartonella, and so on.), it's understandable that you think you've found this key that should somehow turn back the clock. This is a normal initial reductionist response to the stress of any complicated diagnosis or other unwanted life change. If you're still feeling this way after the initial shock has worn off, this is a good time to seek appropriate mental health support to help you work through these changes in your life and give you the perspective to clarify what you need to do now to live your best, healthiest life going forward. You don't have a time machine to avoid that "trigger," but there are treatment options, and almost all patients can achieve improvement with enough care and patience and appropriate, cooperative medical support. There are, in fact, treatments out there for EVERY FORM OF MCAS AND SM, many of which have very minimal risk of side effects. (Also, I don't mean this to scare you, but in case it isn't obvious, this is by no means the case for every condition an untreated mast cell disorder can contribute to.) "What if/root cause" land is not positivity, and staying here won't serve you; if you're struggling to get past denial, it's time to call in a mental health expert to lend a hand.
48) Why don't you recommend more herbs? I keep seeing all these HERBS and PLANTS that are mast cell stabilizers. Aren't these much safer and better than drugs?
Well, I do include some things that come from plants, like quercetin (Japanese Pagoda tree), and of course there are many drugs that are derived from plants, but by and large, for mast cell patients, herbs and plant medicine compounds have a much greater chance of being triggers, of inciting dangerous reactions, and of creating unwanted side effects and in some cases long-term toxicity than the basic classes of "drugs" used for these disorders.
I meet a lot of patients who have avoided pharmaceuticals and gone through a laundry list of natural "mast cell stabilizers," very often having triggered dangerous reactions that significantly worsened their conditions or created other, secondary issues (You also need a liver, for example.) with no noticeable improvement even with enormous quantities and variety of these "stabilizers." Quercetin is one notable exception, as it may be a replacement for cromolyn for many patients (though not all patients will tolerate quercetin), and of course there are others to a lesser extent, but in general, all of the herbal "natural stabilizers" in the world, even if a mast cell patient happens to tolerate all of them (I haven't met one yet.) are unlikely to replace any element of a typical treatment plan. Why? Because mast cells serve several important functions in the body; not everything we have learned about mast cells and stabilizing or improving their function (and in fact, likely not MOST things you may find about mast cells) also applies to their behavior with respect to these disorders. Your in-this-context dysfunctional or over-produced mast cells are at this moment being quite reliable in other contexts, protecting you from any number of actual foreign invaders, interacting with immunoglobulins, healing injuries, forming blood vessels, and doing a lot of other important work. Something that may improve their ability to do one of these jobs, like decreasing sensitization to an IgE allergen, may have absolutely no affect on your symptomatic mast cell disorder, or it may cause a dangerous reaction even as it makes your true pollen allergy slightly less miserable. Some herbs, for some patients, are likely very worth considering at an appropriate time and dose, but no risk/benefit analysis, especially before basic stabilization has been achieved, is going to suggest this route is safer or more likely to be helpful for an actual mast cell disorder patient.
There also seems to be a lot of bias in some patients against "drugs" that I think comes from a misunderstanding of what drugs actually are. Many of these, of course, come from plants (opiates pop quickly to mind since their derivation is relatively simple; these important drugs which also have the potential to be quite dangerous, especially but not only to mast cell patients, come from poppy plants), and there are both "good" and "bad" compounds or chemicals in different contexts and in different concentrations and in different patients, that come from any number of sources and processes meant to extract the relevant compounds and leave out those which decrease the effectiveness of the "drug" in its intended context or which cause side effects or toxicity. Often, patients who want to avoid pharmaceuticals are drawn to non-standardized or contaminated formulations of various herbs (some have high levels of lead, for example, or arsenic...and some find formulations that don't contain the advertised ingredient at all or, as these are unregulated, which contain several ingredients which are not listed) or are unaware of (and in some cases, the scientific community is also unaware of, because safety has not been evaluated appropriately or interactions considered) interactions between various compounds or other things to watch out for, like toxicity. So, if you're inclined to do more experimenting with herbs, I recommend more diligence when choosing and trying these even than you might normally exercise.
49) But what about stomach acid and nutrients? I've heard medications like famotidine can interfere with this and cause problems.
Histamine receptor 2 antagonists are marketed as over-the-counter medications for the relief of acid-related symptoms because when taken intermittently, they temporarily reduce stomach acid. If they're taken regularly, the body adjusts within a very short period of time and stomach acid returns to normal. So this is not a concern with regular mast cell treatment.
Proton pump inhibitors (omeprazole and company), on the other hand, do a few things that have long-term consequences along these lines. These are a different class of drug that also decrease stomach acid, but for much longer and through a different mechanism. Initially, with PPI's, stomach acid is lowered for a longer period of time, but if this class is continued regularly, the body finds ways around the drug, to put this simply, in order to normalize stomach acid production. (This, like most "detoxification" and a number of other processes you don't have to think about, is something the body does on its own.) This creates both dependence and tolerance, as the patient needs increasing doses or stronger PPI's to decrease acid and relieve symptoms over time, and of course low (and, when tolerance is achieved, brief periods of high) acid do have long-term consequences and create a number of challenges for patients attempting to stop the drug.
50) I've been reading things about mortality rates. Is this disorder going to kill me?
First, I believe that many sources of information on mast cell disorder-specific mortality, usually for SM you've probably found online, are from largely outdated and/or extremely limited surveys from when both diagnosis and treatment and knowledge in general about these disorders were more limited, and so when only extremely unwell people were diagnosed, or else from pharmaceutical companies and based on nothing anyone recognizes at all. Of course, I can't answer this question for your individual case. Some people do die as a result of a mast cell disorder (More of these deaths are attributed to MCAS than to SM, in case you're still hung up on SM percentages.), some die as a result of complications of a mast cell disorder (things like infected ports or tubes, for example), some die of other conditions that were contributed to, or which may have arisen entirely because of their mast cell disorder (This is especially common with cancers and other conditions in the population of patients who do not seek appropriate treatment. Untreated mast cell disorders are correlated with several kinds of tumors, for example.), and many, many people with mast cell disorders live long and healthy lives.
Whatever your diagnosis, and even if you're a healthy dragon with impenetrable scales, there is no way to fully control all variables in your life to guarantee that you'll be in this latter group, but there are some questions you might think about to help make sure you're doing what you can to live your best, healthiest life. As hard as this may be right now, please try to remember that this is one of many potentially challenging diagnoses and is by no means the worst thing that you could learn you had today. EVERY form of MCAD offers treatment options and paths forward which could be right for you. Every patient has choices to make, and while no patient ever has control of everything, this means a lot.
1) Whatever your diagnosis, what are you doing to treat it?
A- to handle emergencies (rescue meds and plans with hospitals, loved ones, and so on)
B- to prevent these emergencies (regular treatment)
C- to prevent damage to the body from this disorder (regular treatment)
Are you comfortable with your plans? Have you reached out to other practitioners if yours have stalled out? Have you exhausted the treatment options that are appropriate for your case, in a reasonable order, to best manage your condition? Are you doing everything you can, in other words, medically, to keep your mast cell disorder in check and to prevent it from causing both short term risk and long term damage?
...Or have you tried some things and quit when they didn't work because this was so disappointing and you were overwhelmed at the time? Were you reactive to all the options you tried and haven't looked into things like excipients? Or did you try compounding, but only with cellulose and a few things? Were you hoping for a one-and-done approach and went with something that wasn't mast cell treatment and...might have been a little dangerous? Were you busy chasing "root causes," maybe a lot of them at once, and some things made you worse? If so, can you acknowledge this now, and are you willing to try something different?
2) With the above, whatever your current triggers, are you doing what you can to avoid them to prevent any preventable worsening of this condition?
A- Are you still cleaning with the bleach, drinking the alcohol, spraying on the perfume, and insisting on making Grandma's Big Spicy Secret Recipe every year?
B- Are you dealing with attachment or addiction issues to some things that put you in danger or worsen your condition?
Are you willing to address these things, if needed with professional help?
3) Are you doing what you can to take care of your health in general?
A-Do you have some things that you could safely address, for instance nutritionally or with safe-for-you exercise, or at least work towards, that you're not willing to test or treat or work towards because it would be a lot of time and energy (and not how you LIKE to or used to eat or exercise or whatever it is) since your mast cell disorder makes this more difficult?
B- Are there other conditions you're not addressing, unrelated to your mast cell diagnosis, because they would be a lot more effort to treat due to the diagnosis? Are you willing to consider ways around this?
4) Have you given up because you were exhausted and overwhelmed and then stayed in this pattern because it was more comfortable or because you've been so disappointed in the past when you have put in effort?
A- Have you stopped trying all meds in a class your familiar provider thinks you may need when one caused an issue or didn't work for you?
B- Did you decide prematurely that a significant medical decision needed to be made that was not in your best interests? For example, did you find that eating with this disorder was too much work and consented a little early to a feeding tube or TPN because you were scared at the time? Are you working on doing what you can to make whatever the right choice is for you now, or are you only seeking opinions that confirm that you don't need to make any changes? (Many mast cell patients need different ways of getting nutrition, and this is essential for these cases. With the help of scared and unfamiliar practitioners, however, some patients jump to options like this before they've even thought about changes like getting a blender or not eating out.)
C- Have you accepted that your life's the way it is and stopped trying to make the little things any better or finding alternatives for things you used to enjoy? Are you doom scrolling and focused on only the "bad day" stories from your support group, or are you talking to a mental healthcare provider or doing other things trying to find new ways to improve your baseline and find joy in your current life?
5) Given what you know and what's available to you, are you actively trying to make medical decisions that will benefit, or at least that will not unnecessarily endanger you?
A-Are you deciding not to make a fuss when a provider orders the CT with contrast when an MRI without contrast, or even an echo, would almost assuredly give you the same answer (or even when none of these are necessary)? Do you sign up for the colonoscopy you haven't run by your specialist that's not medically necessary, maybe even without precautions, because it would take so many phone calls or discussions or an order for a non-invasive screening test?
B- Are you going for that beta blocker because it was the first medication suggested, or are you unwilling to try other classes or talk to a competent cardiologist because you've already been to this party?
C- Do you have suicidal thoughts or "what happens, happens," feelings sometimes that may not be in line with your conscious values and that you haven't evaluated and addressed?
D- Have you made some choices early on in this process, perhaps with a medication or with a whole treatment approach, that new information suggested might not have been the best for you, or that is no longer the best for you? Are you now rejecting this better information since you've been through so much and made the best choice you could at the time, or are you willing to change paths now?
I don't ask any of these questions with judgment. These are normal experiences for patients with any rare or challenging diagnosis, and MCAD is certainly among the most complicated to navigate, even more so than many "scary" but straightforward conditions that may cause this level of life shift. But I do think that it's important that patients are able to make the best-informed decisions they can, when they can. These decisions should not come from a place of fear, overwhelm, or disempowerment. So I recommend you talk with your providers, reach out for help when you need it, and try to focus on the things you can control.
51) My question's not here. Can I contact you?
I'm really sorry for this, but...not exactly. Since I can't directly reply to you (This would be assumed medical advice outside of a patient-practitioner relationship.), if you send your general question to this random-stranger-who-just-observes-mast-cell-patients-often at email@example.com and I can responsibly attempt to address it on this page, I'll do my best to do this.