First, a note: It's hard to overlook that most questions I receive about treatment, either directly or in my inbox, are attempts to justify avoiding treatment, usually in favor of actually dangerous substances or practices and frequently even more complicated and dramatically more expensive ones. I suspect that most recommendations for these things come from shady practitioners selling their wares and support groups. I recommend support groups almost universally but have included this page on the potential pitfalls of some information gathered here because I think in particular treatment and doctor recommendations in this setting are often misleading. Why? Ask yourself what percentage of patients whose conditions have stabilized on appropriate treatment might be expected to continue to attend in-person support group meetings or to stick around in online forums to share their experience with each new patient with a question. Luckily, some do, and thank heavens for them! But in most groups, more people appear to be either cured by some definitely-not-mast-cell-treatment they want to tell people about for whatever (usually less than altruistic) reason or are there to find comraderie in and to justify their decisions not to pursue adequate treatment. As a result, it can look like a high percentage of patients have cured themselves with not-treatment (for a variety of reasons mentioned on the support group page), a high percentage of patients are improving on not-treatment and either do not tolerate treatment or have various reasons for avoiding it, and only a tiny fraction of patients are improving after following an even semi-responsible diagnostic and treatment process, even though this is diametrically opposed to actual clinical experience of these disorders.

1) I don't know where to start treating this. I'm supplementing with X, Y, and Z, drinking some special water, and I'm histamine/gluten/dairy/free, and nothing's helping.

The issue may be that none of those things are mast cell treatment. Baseline treatment, and having rescue medications and a plan for when to use them, is a good place to start. See Treatment.

2) But what about stomach acid and nutrients? I've heard medications like famotidine (Pepcid) can interfere with stomach acid 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 do have serious long-term consequences. 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 in order to normalize stomach acid production. 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.

3) 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.)

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 (which incidentally, is what is needed before you can even begin “scrubbing genes,” addressing underlying infections that may be contributing, and “detoxing” or “healing your gut," if for some reason you don't find mast cell treatment and/or your body do this for you).

I hear the words "mask symptoms" and "bandaid" often from patients who have either been warned away from treatment by people in support groups who are attempting to justify their decisions to do the same or who are struggling to mentally cope with this new diagnosis and (very understandably) fear making any changes. But these words don't apply in the sense you might expect in regards to mast cell disorder treatment. When an addict relies on drugs or alcohol as an escape from trauma, we might call this a harmful 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. When an athlete takes a pain-reliever to mask the pain of an injury in order to continue competing, this may ultimately cause more damage by allowing the athlete to continue the exercise without addressing the injury. But mast cell treatment, particularly but not limited to baseline treatment, is intended to prevent damage, not just to make you a little less sniffly. It's not “masking” anything.

This doesn’t mean you shouldn’t do what you’re able to address underlying conditions which might be contributing to your symptoms, to deal with stress, to identify your triggers, and to 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.

4) I'm too afraid to go on treatment, even H1 and H2 antagonists, because I've heard people have to be on it for the rest of their lives.

Like with treatments for many, many other conditions, and perhaps for most chronic health conditions, it's true that some patients will stay on treatment indefinitely. But in this case, it's not because they “have to.” These drugs, and almost everything else in the list of treatment possibilities, do not create any kind of physical or mental dependence. They also rarely create any level of tolerance, and if that happens (more often with very high doses over a significant period of time), it's quickly remedied by switching between options within a class for a short while. These patients choose to stay on treatment indefinitely because treatment is working for them in managing and preventing damage from a chronic health condition and does not have the long-term risks that many other medications used to treat so many other conditions do. With the diligence and patience of both the patient and cooperative provider, almost all mast cell patients can improve their baseline and reach some level of stabilization. It makes sense that they would want to pursue this for a healthier, very likely longer life.

Also, unlike treatments for most other chronic health conditions, many mast cell disorder patients safely cut back the number of medications they take or their doses as their condition stabilizes over time, and some patients are eventually (this is not a short-term goal, and I want to reiterate from the above, not a worthwhile “goal” at all) able to cut back on treatment to the point of not needing it regularly or at all at some point. I think it's probably safe to say all around, with respect to patients on successful treatment plans, whether they have decreased these over time or not, that a number of them would not be here if they hadn't used appropriate treatment for their cases and that a number of others would be on much more “scary” classes of drugs due to other conditions their untreated mast cell disorder contributed to. So if you're really looking for a “best lifetime health decision” with respect to beginning adequate treatment for your symptomatic mast cell disorder, I would strongly encourage you to weigh actual risks of beginning and not beginning treatment. For most of these drugs, dependence and serious side effects are not among them.

5) But I know what "turned on" my MCAS. There HAS TO BE a way to JUST address that, to flip the switch back and turn it "OFF!" (This is one of many “There has to be another way!” questions that almost always invoke an “other way” that is somehow more dangerous, more expensive, and harder on the body than actual mast cell disorder treatment while being irrelevant to treating a mast cell disorder and, very often, a significant trigger for mast cell symptoms or even a common reason for a symptomatic disorder to “appear.”)

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! 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) while helping to prevent worsening of the condition and collateral damage. As above, 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 or treatment when they could have easily prevented a great deal of future medical strife, 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 a one-off 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 THAT TRIGGER, 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 perfectly normal initial 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, however, 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, in case it isn't obvious, this is by no means the case for many of the conditions an untreated mast cell disorder can cause or contribute to.) "What if/root cause" land is not positivity, and staying here won't serve you, so if you're struggling to get past denial, it's time to call in a mental health expert for support.

6) But someone told me treatment would cause cancer!

I certainly haven't seen that source, but if you’re symptomatic and refusing appropriate treatment for your case, there are a number of reasons (and a couple studies) 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 personally, I recommend opting out of.)

7) I’m allergic to benadryl and every second gen H1 and H2 antagonist I’ve tried, and my doctor doesn't believe me. What can I do?

Because you need your providers to take your reactions seriously, remember that it's very likely that you experienced mast cell reactions to something in these medications, not allergic reactions. (Your doctor is probably right that you're not “allergic.”) Have you compared inactive ingredient lists and, if needed, had these medications compounded in a safe filler for you? 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 are told 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 of all kinds are due to reactions to excipients. The other fraction of a percent are typically to fexofenadine. Even in a hospital setting, many common IV drugs have preservatives or potentially triggering materials used in tubing, bags, and so on. Benadryl is also a risk generally when pushed too quickly in an IV, which is sickeningly common. (This should be pushed over 30-45 minutes.) I know this is an extraordinarily frustrating process for you, and possibly for your doctors, as well, but it's very, very unlikely (which is to say that I don't like using words like “everyone” or “no one,” but you may be the first) that there is no form and administration of particularly diphenhydramine and at least some combination of second generation H1 and H2 antagonists that you will not tolerate.

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. Some people need them daily (even considering the risk of dependence, which of course is more relevant with "regular" doses of these meds rather than the fractional doses 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, for example. 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 every patient. There are certain people with particular 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 at least two hundred apples each day. This will quickly let you know what gastroparesis feels like. The same story goes for any number of natural mast cell “stabilizers:” some are extremely common triggers, some help with some other mast cell function that is not relevant to their function in these disorders, and any you do happen to tolerate could very likely take over your entire diet (causing other issues) before replacing a single “pill.” This isn't to say that some of these won't be useful for some patients. It's just really bad bet to assume many of them will be tolerated or that any will replace normal treatment.

10) But there must be a quick lifestyle cure, right? You talk about lifestyle changes a lot, and 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” a mast cell disorder, and your triggers can also change.

11) 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 safe 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, again, not all patients will tolerate quercetin), but in general, all of the herbal "natural stabilizers" in the world, even if a mast cell patient happens to tolerate many of them (which would be surprising in itself), 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 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 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 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 as likely to be helpful for an actual mast cell disorder patient.

There seems to be a bias in some patients against "drugs" that I think comes from a basic misunderstanding of what drugs are. Many of these, of course, come from plants. Opiates, for example, 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. 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 significantly safer, tested pharmaceuticals are drawn to non-standardized or contaminated formulations of various herbs (some have high levels of lead, for example, or arsenic...and many patients 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 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 than you might normally exercise.

12) But I or my neighbor are 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'm devoting my life to thwarting you and your kin, 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, I suspect you'll find those are what led you to believe you had a symptomatic mast cell disorder (that X is or should be listed on this page), and if you did not also require mast cell treatment, and typically other changes, as well, and still don't, this is the best medical confirmation you're likely to receive that your symptoms were a result of X and not a result of a symptomatic mast cell disorder.

However, if you cured your X, even if this is the thing that triggered your worsening or original mast cell symptoms, and these symptoms may have improved, but you needed mast cell treatment and perhaps 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, like you, and unfortunately, “turning off” a mast cell disorder isn't that simple. It's not a Nintendo.

13) 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 medications, 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 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 know 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 pesky "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.

14) 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 (I found him in a group! He's a mast cell specialist!) 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. 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.

15) 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 okay 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...

16) But my high heart rate. I’ve got to get that under control with beta blockers, right? It feels awful!

(POTS symptoms are frequently 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.)

17) 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 something as important as your prescription medications. 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 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 (note that these are needed in very low quantities you would not expect to be a concern for 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. Many 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.

18) 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?

19) I read something about antihistamines and Alzheimer's and dementia.

I've heard this concern a lot lately. Without getting into the merits of this study or the validity of conclusions drawn, a host of serious Alzheimer’s and dementia research, long-term studies of huge swaths of the population, are very clear about what DOES contribute to dramatically increased risk. These include age, of course, and in some cases a genetic component, but the “big” risk factor identified by any major study I'm aware of is the vascular damage that’s helped along by:

1) A diet rich in especially red meat, but also in animal fats generally

2) Alcohol consumption

3) A diet lacking adequate fruits and vegetables.

4) Lack of exercise.

5) High cholesterol.

6) Diabetes

7) Various untreated sources of inflammation (like, for example, untreated symptomatic MCAD)

Even if we really push past its rational limits the possibility that there may be a measurably increased risk from the long-term, regular use of first generation antihistamines like diphenhydramine for Alzheimer’s and dementia, we know this doesn’t hold a candle to any one the above. Say this risk may be +5. Perhaps further research down the line with high enough doses will even show it to be something more like +10. So if diphenhydramine, for example, is necessary for a patient to prevent further inflammatory damage from their mast cell disorder, they are perhaps taking that +5-10 but dropping a very well-documented risk of +100 or more.

So I would recommend asking the patient if they’re lowering their risk in the ways that we know are much more significant: An actual mast cell patient is, of course, probably not drinking alcohol but, assuming this, are they also working towards a healthy diet rich in fruits and vegetables and at least low in red meat and animal fats, if it includes these at all? (If they struggle with fiber-rich foods fruits and vegetables due to gastroparesis, how about throwing them in a blender or using whole food powders?) Are they successfully managing their mast cell disorder and other conditions and so preventing resultant damage, to the extent this is possible for their case? Are their cholesterol and blood sugar under control? Do they get adequate exercise? Have they thought about brain exercises, another thing we know to be helpful in delaying or reducing this risk, and correcting the other well-known risk factors if the answer to any of the above is “no?” If not, why are we having a conversation about this potential much lesser risk, particularly in a case in which this drug likely reverses one of significantly larger, well-established risks?

I, and to my knowledge, no one recommends first generation antihistamines as regular first line treatment. When they can be reserved for rescue, premedication, or flares, that’s certainly preferable. However, when the patient needs them regularly, even in high doses...they need them. We don’t recommend them like fruit and vegetables because of the sedating side effects and the hope of keeping this class as effective as possible when it is needed, not because we imagine that Benadryl may somehow be the bigger risk than the patient’s otherwise uncontrolled mast cell disorder, their diet, or their lifestyle.

Incidentally, if you’re interested in cancer risk factors or those for many other potentially quite serious conditions (or in premature death generally) the known risk factors for the overwhelming majority of these also line up startlingly well with the above, and avoiding these is also central to heart health and healthy weight management programs.

20) One more: But 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." It seems like most people aren't doing this treatment thing the way you say.

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 and of patients. This scenario is common: Kara has serious unaddressed symptoms. Frustrated her current medical team has not been helpful, Kara is happy to find hundreds of people, mostly online, who are thinking positive about how they are improving symptoms just like hers, some 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. 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 put her in danger or make her case worse. Kara does not treat her mast cell disorder (or, if her medical team should have investigated other causes, these), but she at least emotionally feels better because she’s in good company—none of these people actually treat what they identify as their dysfunctional mast cells, either. Kara might even feel she's improved because she’s improved her coping mechanisms or feels less stressed with her decisions validated. But then she 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 answers to 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 physical 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 evaluate whether 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 or Alzheimer's or etc. They've got the "root cause" cures and the coffee enemas and the “detoxes” and the... So, they won’t accept anything that might help their actual 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 non-trending lifestyle changes because you are unsympathetic to their plight. You can empathize with this frustrated practitioner a little, can’t you?