Support Group Considerations
Support groups, whether online or in person, can be wonderful. For just a couple larger online examples, on Facebook, I believe both “Mastocytosis and Mast Cell Disorders—an Integrative Approach” and “Mast Movement” fall into this very helpful category. I'm sure there are many other well-monitored groups on various platforms and regret that I'm not in a position to learn about and list them all. Groups are often gold mines of spot-on advice, support, and ideas for rare disease patients, and I recommend them wholeheartedly. However, sometimes, support groups can be challenging to navigate. Please consider the following as you embark on this journey:
On FINDING a medical provider and the particular challenges faced by support group recommendations:
Practitioner recommendations that come from support groups can be especially misleading. This is not the case in every group. Some groups, both in person and online, are run by incredibly competent individuals and are full of fantastic recommendations. There are, however, a number of common reasons that actual specialists and generally familiar providers are not included in or are promptly removed from some lists of recommended providers. The more mast cell patients a provider has seen, the more likely they are to fall into at least some of these categories:
Actual specialists 1-3 weren't willing to order unnecessary and potentially very dangerous tests, prescribe the wrong drugs for their patients' cases (whether for actual mast cell patients, histamine intolerance patients, or psychosomatic patients), or overlook the often quite obvious other causes for their patients' symptoms which the patients were unwilling to test or address.
Actual specialists 4-7 wanted to help their patients and explained that their quality of life could be improved and damage prevented with appropriate treatment. These patients were not willing to try treatment, or the treatment recommended, typically in favor of charcoal and coffee enemas and binders and addressing what they believed to be their “root causes” and etc. etc. etc. They're in even more challenging situations now, and Specialist 4-7 are the only people they can blame.
Actual specialists 8 and 9 are among the most knowledgeable in the world on these disorders and have helped thousands of patients, but they—and, coincidentally, everyone else treating these disorders—do not agree with the group leader's opinions regarding what constitutes appropriate diagnostic criteria, treatment, or in some cases, even the most basic facts about these disorders.
Actual specialists 10-100 are guilty of the iniquitous crime of telling alcohol-dependent folks they will not be able to successfully manage this condition while remaining dependent on alcohol.
So, who does make the list?
“Specialists” 1-10 all listened to a patient who was convinced they had a mast cell disorder (any kind at all) and, typically for the sake of saving time, simply agreed with them. They didn't rule out other possible conditions. They didn't take a detailed symptom history. They didn't advise the patient on how to begin to treat this disorder properly, identify their triggers, and so on. “Specialists” 1-7, unbeknownst to their patients, wrote “psychosomatic condition” on the chars, which will cause these patients' symptoms not to be taken seriously by other providers, perhaps while saying something about trying an H1 antagonist on their own, “specialist” 8 nodded along but was thinking about his dinner that evening and didn't bother writing anything down at all, and “specialists” 9 and 10 decided they were familiar enough to enter an ICD code for MCAS (and maybe even got it right!), give their patients treatment for something else, like an allergy, and offer a whole host of bad but right-sounding advice which is then passed along to other members of the support group as the recommendations of a specialist.
“Specialist” 11, whom I really don't want to include here, but unfortunately exists, in some places in droves, is a lot like “specialists” 1-10 but is very willing to prescribe higher risk therapies to anyone who asks for them, even before establishing regular treatment or, most commonly on the alternative side, a lot of inaccurate, expensive, and in many cases dangerous “root cause” tests, herbs, in-office IV's, and so on., typically which they make a small fortune on. ...But they spent so much time listening!
Please note that not all or most providers who recommend various alternative or complementary supplements or therapies are hucksters. Most patients do best on some kind of integrative treatment plan with a variety of lifestyle changes, and I wouldn't want to suggest that the many competent practitioners who recommend various supplements or therapies that are important elements of these treatment plans are in any way to be lumped in with the hucksters or mast cell "specialists" above. How can you tell the difference? The huckster, or even in some cases mast cell "specialist," won't encourage mast cell treatment, first or sometimes at all, doesn't really do the "low and slow" thing (that's not how they make money), won't be interested in ruling out most conditions that don't come with "special" expensive tests (or will run these tests, enjoy this check, and not pay much attention to the results other than to sell you on what they sell all of their patients on that they can provide in-office), or will have their treatment priorities in general out of line with your safety and best interests. Feel like you can't catch your breath sometimes and they think you should try a vitamin bag or IV cocktail? Aren't sure exactly what's going on yet or haven't even gone through even baseline treatment, but either your bank account or your insurance will cover X or Y? Have a little SIBO, some low-lying tick things, or something similar, so they think that's what you should treat, now, before you're reached any level of basic stabilization, and with a bazooka? "Don't need" rescue or other regular medications, but "detoxing" is the plan? For patients without mast cell disorders, providers who employ these tests and various therapies run the gamut from harmful to helpful, if they know what they're doing and hit on issues that truly do need to be addressed. For patients with mast cell disorders, however, even the best of these "specialists," in treating this population how they responsibly treat others, may be quite dangerous, and many of the general huckster variety also prevent patients from getting the medical testing and treatment they do need until a great deal of damage, both financially and medically, has already been done.
Keep in mind that EVERY ONE of the patients who saw these “specialists” finally felt heard. Some are managed by them...just not with their best mast cell treatment. Many are shocked to find, often only during an emergency or point of crisis, that the disorder they've been “treating” for several years was never even mentioned on their chart, and often, everything else on this chart has been ignored due the addition (which they previously could not see) of “psychosomatic disorder.” In some cases, even when the original provider believes they are providing mast cell treatment and that this diagnosis is correct, as in the case of "specialists" 9 and 10, an emergency or other provider with even passing familiarity of these disorders notices there were several steps skipped in this diagnostic process and incorrect assumptions and (perhaps wrongly) dismisses the possibility of mast cell concerns out of hand. This happens frequently with cases of the in practice extremely rare "aggressive systemic mastocytosis;" if this has been put on your chart but you do not meet even the criteria for smouldering systemic mastocytosis (perhaps you meet Indolent SM criteria from a bone marrow biopsy...or, bafflingly often, you do not... but you do not show dramatic mast cell burden in marrow, your tryptase is under 200...but your provider has noted serious mast cell issues and your spleen's enlarged and so written this), it's imperative that you get this removed as soon as possible, as there's a very good chance no medical provider in an emergency or other setting will take the actual mast cell disorder you may have seriously after seeing this flagrant misdiagnosis there. Frequently, in these cases, the semi-familiar provider also dismiss the patient's credibility on the whole and will flag his or her mental health rather than, as they should, the competence of the provider who added this diagnosis even though the patient had no hand at all in misdiagnosing themselves.
Still, patient recommendations for providers are among the most helpful to any rare disease patient. Probably the most expedient way to determine whether you might benefit from seeing a particular provider is to ask the recommending patient if they're willing to tell you how they were diagnosed, what treatment they're prescribed, and any guidelines they feel comfortable sharing with you. Did they go through all the options for baseline treatment? How many times a day? What other classes were prescribed if there was not adequate improvement in symptoms? What else was recommended? What lifestyle changes? What tests were run to rule out other conditions? What tests were NOT run (skin testing for allergens, unnecessary radiology, etc)? Did the provider take a detailed history...or did they magically know upon looking at the patient to diagnose a mast cell disorder? Did they think symptoms pointed towards SM? ASM, even, because they haven't read even the most elementary information about these disorders? Did they explain how a particular H1 antagonist is better than the others for everyone? Did they forget H2 antagonists, think these should work if taken once a day, or mention that you shouldn't be “allergic” to inactive ingredients in them? Did they go to Xolair or cromolyn first, out of a lot of other confusion? Did they assure the patient they only have a “mild” case, as 1-8 above often say, and should try to “live with it” as best they can? Are they even making an effort to identify and treat a mast cell disorder at all?
Remember, a practitioner simply SAYING that you have a mast cell disorder or AGREEING with you that you have a mast cell disorder, however affirming this may feel, does not mean that the practitioner 1) BELIEVES that you have a mast cell disorder, 2) has ruled out other likely causes for your symptoms, some of which may require immediate attention, 3) will choose to or know how to TREAT you for a mast cell disorder, or 4) (in many cases even more importantly) will REFUSE to treat you in ways likely to make a mast cell disorder dramatically worse (with unnecessary radiology and other procedures, the rare but nonetheless notable “let's just try/charge you for IVIG and see what happens” maneuver, various triggering meds, herbs, vitamin cocktails, and so on). Being diagnosed with a particular mast cell disorder you do not have may be equally harmful in encouraging other providers to dismiss the possibility of your actual mast cell disorder out of hand.
Things to remember about support group advice in general:
I recommend patients find whatever positive support they can as they embark on any rare disease journey, and I would say support groups are frequently the best sources of information and community available to rare disease patients. It's unfortunate, then, that some interactions in some support group situations can cause harm. Please keep the following in mind when participating in an online or in-person community of rare disease folks:
Many people have regrets they haven't come to terms with. Like everyone, at some point, they could have made a better decision or they had good intentions but molded their choices around bad advice from a "specialist," and they're not yet ready to acknowledge this and work towards correcting these missteps (or perhaps they think it's too late to do so). Therefore, when they believe they're legitimately trying to help you, in their minds, all the things they should have done are not good things, so you're discouraged from these things too, and encouraged towards practices which are at best benign and sometimes which are extreme triggers. There are a lot of people who claim treatment “didn't help” them at all, for example, but who actually refused treatment for various reasons, could not stop drinking alcohol or were unwilling to cut other triggers worsening their conditions, and so on ad infinitum. (NB: many, but not all, patients are able to decrease the number and quantity of meds they were initially on, and some even only use them intermittently or can reserve them for emergencies after years of stabilizing...but they will mention this, and the key word here is most often “years.”)
Many people have guilt, which is even worse. They've done what in hindsight turned out to be the wrong things for their children or other loved ones. I can't imagine the feeling, but I can almost guarantee they're not going to tell you the appropriate treatment they denied their now very sick or dead child (which often, they won't mention that they have) is something you should pursue. Sadly, many people in this situation spend the rest of their lives giving and justifying this advice as a coping mechanism. They're among the most active.
This is less common, but it does happen. Being a sick person has become central to the identity of some patients. Subconsciously, these patients are not ready to be healthy and will self-sabotage and, in the process, entirely unwittingly give advice which encourages you to do the same. There is camaraderie in misery. Many patients who have been through a great deal of medical strife also struggle with learned helplessness. They'll tell you there's no help for some particular symptom or the disorder as a whole because they haven't received adequate help. They'll tell you no one will listen to you. They'll tell you there's nothing you can do to get better. Unfortunately, they believe this. You shouldn't.
Some (certainly not all or most) group creators, leaders, administrators, and so on are in this position because they did not agree with the information provided by other support groups, the medical community, and/or the overwhelming body of peer-reviewed research. Many group leaders are true experts (and thank goodness for them!) but some others sound like experts because they've made up their own facts, and some are mentally unwell. If you're new and a support group is your primary source of information, it can be very difficult to distinguish between these. Perhaps your leader's case fell through the cracks and they were let down by their medical teams, perhaps they think they have a mast cell disorder and no one agrees with them (rightly or wrongly), so they unknowingly made up their own facts about the disease, or perhaps they fall into one of the above categories and are doing their best to help others, but are either working on inaccurate information themselves or are otherwise hindered from providing adequate support. Unfortunately, in these cases, accurate information may be hidden or promptly squashed, and as a result, sometimes tens of thousands of people are offered dramatic misrepresentations of these disorders and are prevented from learning about appropriate medical support or other resources which disagree with the leader's opinions.
Sometimes (and this is an important function of support groups), patients come to support groups to vent an emotional truth or a feeling of being overwhelmed or without options. When they do this, they aren't looking for advice or solutions, but for sympathy or empathy or for confirmation that they're not alone, that other people have struggled with these feelings, too. It's easy for especially new patients take these posts as informational in spite of their misrepresenting even the particular patient's actual experience. Without knowing these patients, their charts, and their daily circumstances personally, it can be hard sometimes to distinguish between emotional truths and objective ones.
See this page. Even in the best-managed, mast cell disorder-specific groups, a sizable percentage of the individuals who identify as having a mast cell disorder (and in some cases, the most vocal with advice) instead have:
"diagnosis” and “treatment” from a “specialist” above, or
a totally different condition, from allergies to gallstones to psychosomatic disorders (That's why not-mast-cell-treatment cured them! In the case of psychosomatic disorders, some of these patients will actually have a series of not-mast-cell-treatment cure revelations and are cured over and over. They'll have "look what I learned!" or "look what's finally taking care of all of my symptoms!" announcements on a regular basis.)
Not sure if you might fall into one of these categories yourself?
If DAO completely cleared your symptoms: That's fantastic! You almost certainly have histamine intolerance and, assuming this was the golden ticket, no remaining symptoms that should indicate a mast cell disorder. This is important to know to accommodate the histamine intolerance going forward. Histamine and other amines that are not broken down in the GI tract adequately with histamine intolerance are from dietary sources, not a result of mast cell degranulation. This is not a mast cell disorder.
If something that decreases inflammation or toxin load was the answer to everything: Swell! (See what I did there?) Addressing inflammation was definitely the way to go. It mast cell treatment wasn't necessary in addition to these measures, it's extremely unlikely that a mast cell disorder was the cause of your symptoms and extremely likely that one or more of any number of other very common inflammatory conditions, exposures, and so on were.
If cutting a medication was the answer to everything: Fantastic! You experienced a negative response to or side effects of a medication. These can be awful. Kudos for identifying the problem and avoiding it in the future.
If Xolair cured your symptoms, without any typical mast cell treatment needed: Great! You very likely had an IgE issue Xolair is treating successfully, and that's wonderful news. It's a great drug for many people. .
If removing yourself from mold completely cured your symptoms: Good call! Mold exposure can certainly be an inciting trigger for a mast cell disorder, though, so mold exposure beginning your symptoms and these not improving when you are out of mold does not preclude the possibility of a mast cell disorder being to blame for your continuing symptoms.
If addressing a vitamin deficiency fully addressed your symptoms: Well done! Mast cell disorders unchecked can certainly contribute to a great number of deficiencies...but a great number of deficiencies may also cause the kind of multi-system, nebulous symptoms people sometimes mistakenly assume arise from a mast cell disorder.
If PPI, benzodiazepine, or other drug's WITHDRAWAL triggered your symptoms: I'm sorry! Tapering off of regular dose benzos (which by and large are a different subset of their uses) or PPI's can be a very long and challenging process, and withdrawal symptoms for both often mimic mast cell symptoms. One consideration with benzos is that they are powerful mast cell stabilizers, however, so coming off of them if you do have a mast cell disorder will probably take a great deal of additional medical support.
If a beta blocker (particularly without a corresponding dramatic increases in mast cell treatment) improves your symptoms, especially that you've been taking safely for some time: That's great! You likely suffer from one of the conditions a beta blocker treats. This working for you and being safe for you, particularly in the absence of a great deal of additional mast cell treatment to attempt to counterbalance its effects, might be the closest thing to a guarantee that you are not currently also dealing with a symptomatic systemic mast cell disorder. Outside of very careful management in rare cases with a number of other treatment options to counteract its action, it's perhaps the only drug whose long-term tolerance (and in some cases whose short-term tolerance) can help point you away from a new mast cell diagnosis.
Some groups have a lot of discussions or threads that turn out like the following:
Comment: A new or suspected mast cell patient presents with obvious advanced anaphylaxis.
Responses: A: “That sounds like an X vitamin deficiency. Have you tested...”
B: “That sounds like mold illness. Have you checked...”
C: “Have you tried sniffing some lavender oil?”
D: “I had this, but herbalist Emmanuel...” or “Herbal medicine/This herbalist...” "Dr. X's IV treatments..." (spam)
E: “This is awful. I get this all the time. There's nothing you can do.”
F: “Some charcoal takes care of this right away for me.”
G: “I take a beta blocker for this.”
H: either “USE AN EPIPEN AND CALL AN AMBULANCE NOW” or, when phrased in such a way as to avoid offering medical advice, “My mast cell specialist tells me to use a particular progression of rescue drugs and an epipen with these symptoms and to go to the hospital, where I'm given steroids, first generation H1's like slowly-pushed benadryl, H2's like famotidine, a low dose benzodiazepine, and oxygen, and monitored for some time for rebound reactions. Afterwards, I need...”
Obviously, H is the only response that has a chance of addressing the anaphylactic emergency. In some carefully-monitored groups that attempt to provide accurate information and remove individuals using the group to sell their products or services (DNRS coaches and other MLM's, predatory practitioners of various kinds, and so on), there are several H's and very few responses like A-G. In some groups, however, irrespective of the size of the group, what's likely a combination of many factors works against the ability to provide any helpful information at all; there are dozens of A-G responses and few, if any, H's. While the anaphylactic emergency illustrates this quite clearly (and is not an exaggeration, unfortunately), this also goes for basic information about the disorders and terminology, classes of drugs, symptom management, and so on. Sadly, the new member is often not in a position to know which answers are providing accurate information and which are wildly dangerous, and many of the people who offer the most inaccurate information sound the most confident in their knowledge. Consider the following.
Common examples of inaccurate information that sound convincing, affirm the patient's current understanding, or offer an easy next step:
X is the strongest/best second gen H1.
H2's are only for stomach acid/ GI symptoms, but they lower stomach acid and interfere with vitamin absorption in the long run.
I was diagnosed with SM—almost always ASM!—based on symptoms.
Keep fighting for your little one, super mom!
You start with the cromolyn...
I was diagnosed with MCAS due to high tryptase.
You don't need any kind of testing, just someone who will look at you for 10 minutes and say you have a mast cell disorder. OR, don't worry, your histamine is normal, so you don't have this.
I have all these symptoms, but we've ruled out MCAS with this test.
DAO is how you fix MCAS/SM.
That's normal with a mast cell disorder (re something that needs to be evaluated separately).
I have the root cause answer! It's mold/vitamin deficiency/SIBO/candida/bartonella... Bazinga!
Skin testing is the way to go, but you need to be off antihistamines. It showed I'm allergic to...
This one guy with the IV's and/or this herbalist saved/is saving my life (check out my instapictures, click this link to find him, or PM me for details!)
You're doing everything you can.
Examples of accurate information that is not as palatable:
Different H1 (and H2) antagonists work for different people. There's no way to know until you try them (maybe all of them). The “better” H1 and H2 are the ones that work best for you. (Sorry!)
That's PPI's that cause stomach acid issues in the long term, interfere with nutrient absorption, and so on, not H2's. H2's only lower stomach acid briefly as you're starting them and block this pathway that's an essential part of baseline mast cell treatment. (Unfortunately, this both does not line up with the patient's marketing familiarity of OTC H2 antagonists and very rightly upsets people who have been on PPI's for years, in many cases without any awareness of their risks.)
What you've said suggests you don't actually meet any of the recognized diagnostic criteria for SM/the diagnosis it's taken you years and many tears to get is wrong. OR, alternatively, everything you've been spending your money and energy on for the last two decades is not treatment. (Remember that NO form of SM can be diagnosed or pointed towards or is classed based on symptoms. Also, again, the overwhelming majority of “serious"/debilitating/dangerous cases are from MCAS. Since many patients will gloss over the previous sentence, some things to know about ASM, since that seems to be the most common question from newbie healthcare providers, are that it will ALWAYS present with a bone marrow biopsy showing the established criteria (it is not possible to diagnose, guess at, or assume without one) and to my knowledge has NEVER presented with normal or even close to normal tryptase. It's also quite rare. Those people who identify as having an ASM diagnosis because they have serious symptoms but who have not had a positive bone marrow biopsy, and bafflingly often, who have normal or only moderate elevations in tryptase, have either diagnosed themselves, been “diagnosed” by a “specialist” no competent provider will take seriously, since at least bone marrow biopsy results for SM are generally well known, or is one of the unfortunate individuals who, however wrong this may be, has “psychosomatic condition” written on their charts with no evidence of mast cell disorder or attempt to treat a mast cell disorder there at all). Mast cell leukemia is a totally different circus and should not be expected to present with classical mast cell symptoms, but is even more rare.)
Any hint that any of the things mentioned by the super-mom are actually common triggers and are much more likely to make the child worse, or even be fully responsible for the child's symptoms, than they are to help anything related to the current diagnosis.
Cromolyn is, for many people, a very effective local stabilizer. However, using it orally before triggers are known can make identifying these very challenging. It is not absorbed into the body, so it doesn't have the ability to slow down or prevent worsening systemic reactions, and it is not a component of baseline treatment and/or for (even close to) everyone in any form. It has a short half life, so (after a VERY slow titration, which is often especially important with this med if taken orally, 30 minutes before a meal) you will know pretty immediately if it helps you. It does not stay in the body and build up for 6 months, as more than one person has come to me believing (I have no idea where this came from, since it does not get into the body in the first place). When taken for example orally, it will not prevent systemic damage unless you are eating dietary triggers which are beginning this process in the stomach (which, if you know about them, you should then stop eating, since cromolyn can't help lower in the GI where these things are most absorbed). How does it appear to help certain people with skin problems when they don't put it on their skin and headaches and respiratory symptoms when they aren't nebulizing it? Either their symptoms were beginning in the GI tract, where, again, oral cromolyn stays, or they are experiencing a placebo effect. Sadly, I meet a lot of exhausted patients who say they've done everything possible, but a quick look at their chart suggests they've been suffering, often for years, and their bodies undergoing a great deal of damage for the simple reason that they were told cromolyn (and usually some herbs) was everything. I do not believe cromolyn is a bandaid (see FAQ) because it is an important step in preventing cascading reactions and stabilizing the GI tract for some (not all, not most, and it's a trigger for some) patients, stabilizing the skin when used topically, stabilizing the lungs when nebulized, stabilizing the sinus passages when used nasally, and stabilizing the eyes and ears when used in these ways...but it is a bandaid when used inappropriately. It won't stop the damage eating trigger foods causes when these reach lower in the gut and it's no longer effective, it won't address the cause of the hives, the lung issues, the eye issues, etc., if these are not from external triggers, and it can fool a well-meaning patient into believing that since they're no longer, for example, immediately vomiting their trigger foods, that they're on adequate treatment.
The overwhelming majority of MCAS (which comprises most mast cell) patients will always have normal tryptase. If your tryptase is sufficiently elevated, testing for other conditions is called for.
Diagnosis is complicated, particularly with MCAS. It is important to rule out other causes (blood and possibly urine tests, if neuroendocrine tumors/carcinoid are a possibility), take a detailed symptom history, and most often, to try several treatments to confirm this diagnosis, whether or not other mediator tests are run. (Sadly, many are hesitant to try treatment due to misconceptions about these classes, typically in favor of someone looking at them through the magical lens and immediately being certain that MCAS is what is causing their symptoms. This is always a "specialist." In reality, it is VERY RARE to confirm a diagnosis of MCAS without treatment helping, and if treatment still isn't helping at all, even if several mediators have pointed towards the diagnosis, there are likely other conditions at play. Mast cell disorders do not exist in a vacuum.) You may run several mediator tests in both urine and blood with the understanding that these often give false negative results and few labs are equipped to handle them properly.
There is no test to “rule out” MCAS. You can know that MCAS is not responsible for your symptoms when you've identified another condition responsible for these symptoms whose treatment successfully addresses them. (Good news: Most of these conditions are much easier to identify.)
DAO addresses histamine intolerance, not MCAS or SM. MCAD treatment is significantly more complicated. You may, of course, suffer from both, and if you are an MCAD patient, it's likely that you will need to watch your histamine intake to some extent, as well.
That sudden-onset lower right quadrant pain sounds a lot like appendicitis (an emergency), those test results are seen often with certain leukemias, and so on. (Sometimes, patients share test results that point to, for example, various blood cancers, are told these ranges or symptoms are normal with MCAD and that their doctors don't know what they're talking about, and do not pursue appropriate treatment for their comorbid conditions.)
Those things suggested to address those supposed “root causes,” even if one actually was responsible for triggering your symptoms, are much more likely to make a mast cell disorder worse. Sure, you can and likely should address these things separately and appropriately when you're stable enough to do so (assuming you're using accurate tests, are within a certain range, and so on. Sometimes, we go looking for a problem, we find a something that is actually general to the human condition, and we go after it with enough gusto to cause a lot of real problems.), but if you have a mast cell disorder and not just symptoms of these “root causes” that mimic mast cell symptoms (Blame your parents. Blame your food additives. Blame the mast cell gods.), clearing the mold, the lyme, the metals, the bartonella, the sibo, the candida, the worms, or the aliens almost certainly will not change that you need mast cell treatment. Often, patients are drawn to the idea of root cause “aha!” moments because success stories (whether real for non mast cell patients or invented as surreptitious marketing ploys) offer a simple and relatively quick solution that's more palatable than the complicated, individual process needed to address any complex disorder like MCAD. Everyone wants to hear, “this easy, accessible thing will cure you forever!” No one wants to hear, “You're going to have to do some work- journaling triggers, tracking symptoms, making difficult lifestyle changes, ruling out a number of other conditions, and slowly titrating on various med trials, one at a time...”
Nope, nope, nope! (nope) (NEVER to skin/patch/injectable tests if there is ANY reason to SUSPECT a mast cell disorder, period. (Also never to going off antihistamines for any kind of testing. These are the only tests they affect.) Allergies and mast cell triggers are, functionally, unrelated. Mast cells behave predictably when they cause allergy symptoms, based on a particular usually IgE "trigger." Mast cells are behaving inappropriately and unpredictably in cases of MCAS, or there is greater burden from their degranulating due to number in SM. Allergies, identified by blood, are a differential diagnosis for MCAD. That means they're something to rule out, and while you can certainly suffer from MCAD and allergies concurrently, confirmation of a high number of allergies in no way suggests a mast cell disorder. This actually suggests allergies as a more likely cause for your symptoms rather than a mast cell disorder.
This person is paid by or, in many cases, actually IS one of many profiles of the huckster they're hoping you'll see after following "their" success story. Sometimes, they're a real patient who's getting free or discounted "treatment" (though they won't mention this) to share their positive experience.
Here's a basic starting list of resources or information...better known as a quick way to become overwhelmed and insulted by learning about all the things you have not done to even begin to address this condition appropriately. (Starting over with good information and the willingness to reconsider inaccurate assumptions is, of course, the only way to empower the patient to get the awareness, care, and support they need to begin to improve their health...but not everyone will like this information.)