Finding a Medical Provider
With appropriate medical support and usually with a great deal of time and patience, the overwhelming majority of mast cell patients can improve their baseline and at least make significant strides towards preventing damage and complications from these disorders. Regrettably, many otherwise very well-informed medical practitioners don't have a good understanding of mast cells and their functions in the body, much less of these "new" mast cell disorders and how differently mast cells behave in cases of MCAS. Hopefully, your current practitioners will want to learn more about these conditions, both to better facilitate your own care and so they are more likely to identify and successfully treat these symptoms in other patients. The majority of mast cell specialists are hematologists, but there are some notable exceptions (Neurologists! Functional practitioners! Gastroenterologists! Some frustrated cardiologists!), and my assumption is that the overwhelming majority of mast cell disorder patients get the support they need from GP's, GI's, cardiologists, and even others, like mental healthcare professionals (and a big kudos to all of them!) who take an active interest in learning about these conditions and carefully managing these patients' care based on their individual needs.
For most mast cell patients, a "specialist" will never be necessary, but a competent prescribing practitioner will. This is why I've created the list below, but first, please see this note about support groups and some unique challenges with practitioner recommendations found in these settings.
Unfortunately, the most common scenario is this: A competent GP who does not feel comfortable with their current understanding of mast cell disorders responsibly refers the symptomatic patient to the doctor in his or her network who identifies themselves as a mast cell specialist. Alarmingly often, these are allergists or immunologists who do not know enough to know they are NOT mast cell specialists. They put members of this population in extra danger, their patients then spread more misinformation in support groups, reporting from their "mast cell specialist," and...here we are. As is sadly the case in many "rare" or under-diagnosed conditions, the burden falls to the patient to determine if their "mast cell disorder specialist" in fact knows anything about mast cell disorders at all or if they might have better luck being treated by, say, a goldfish or a deck of tarot cards. This is devastating on many levels, but it's common.
So, a very basic guide which I hope will help you to make this competence call for yourself:
You have likely not found a practitioner who is familiar with mast cell disorders, if:
1) They want you to do skin testing for allergies. (not a biopsy)
2) They tell you to go off antihistamines for said test (or for anything else).
3) They tell you don’t need to premedicate for radiology or other procedures. Assuming they haven't just woken from a coma they've been in since the early 90's, bonus points if they’ve just ordered CT or anything with contrast or dye and are pretty sure they “can’t see anything” if you don’t consent to the contrast agent.
4) They’re worried about you taking more than the “recommended dose” of antihistamines.
5) They have prescribed you a PPI rather than an H2 antagonist. They think this is better than an H2 antagonist, because it’s stronger, and...they do the same thing, don’t they? Or (this happens too often for comfort) they think the PPI is an H2 antagonist. Or they don't know to recommend an H2 antagonist to begin with.
6) They want you to start a special diet. This diet has a name other than "avoid-your-triggers-and-some-common-issues-at-the-beginning-and-you'll-have-to-figure-out-everything-else-on-your-own."
7) They have some vitamin bags they sell which they want to give you to address your nutritional deficiencies. (This isn't to say some individual vitamin deficiencies will not be important for you to address, with proper testing and guidance and once you’ve taken care of treatment and are reasonably stable. But this is not step 1 with either a nutritional deficiency or a mast cell disorder, and the answer very likely won't come in a bag.)
8) They say the first step is to perform a bone marrow biopsy or a "detox."
9) They only know about tryptase, and maybe a couple others of the hundreds of mediators released during mast cell degranulation. They think your not having elevated tryptase (whether or in one test or after several) means you don’t have a mast cell disorder. At least 80% of MCAS patients, which comprise the vast majority of mast cell disorder patients, never have elevated tryptase.
10) They want you to begin treatment with something (anything at all) other than baseline treatment and rescue meds.
11) They think they can “rule out" MCAS by some sorcery.
12) The use words like "all" and "always" when referring to mast cell or trifecta patients, and all their patients are on exactly the same treatment plans and have all the same triggers.
and some huckster flags:
13) They, a self-proclaimed specialist, have an IV that's going to stabilize you long-term (for example, they're using diphenhydramine or other effective drugs like this not as rescues or as needed, but as fun in-office bonus payments they tell you will magically continue stabilizing you weeks or even months past their half lives). Bonus points if said IV has preservatives. Double bonus points if they did all the right testing (...though it might have been a lot more expensive through their special lab than when you did it last time with your GP or another provider) and results which should have indicated investigation into other causes still led you to this.
14) They want you to start seventy-two things at once or have what you might call an "intense" treatment plan only they can offer, because they designed it. It's revolutionary. It's overwhelming. It's not one thing at a time, even if it's some of the things that might be necessary for you. They say this means they're "holistic."
You probably do have an educated mast cell practitioner if:
1) They get you started on baseline treatment with H1 and H2 antagonists (not PPI’s!) several times a day, and tell you’re likely to have to try several different combinations to find the right one for you.
2) They want you to have documentation with you and a plan for any time you go to the hospital or have any kind of procedure.
3) They mentioned compounding and how common excipient reactions are when you told them you had past reactions to certain drugs or supplements.
4) After establishing baseline treatment, if you still have unresolved symptoms, they consider other supplements and classes of pharmaceuticals that might be appropriate for your case. These are actually recognized mast cell disorder treatments, used in ways they would be expected to benefit actual mast cell disorder patients.
5) Even if they don't specialize in them, they know what POTS and EDS are and understand that these are common comorbidities.
6) When you say you’re reactive to sweat/computers/sunlight/something one day and not the next, they are not surprised.
7) They use the word “maybe” or note commonalities with other mast cell patients when you ask if x, y, and z symptoms or pieces of your medical history might be related. (A non trifecta-savvy doctor will frequently think you either have Munchausen’s or 500 unrelated diseases, incidents, accidents, and “quirks.”) This doesn’t mean that other common causes of your symptoms shouldn’t be ruled out. This means you should not be relegated to Munchausen’s or 500 unrelated disease land just because your doctor isn't familiar with this particular group of disorders.
8) They want to do bloodwork to rule out some other things, if you haven't already done this. They DO want to know your baseline serum tryptase level and believe other testing may be significant, too. They want more information in general. They can't just look at you and say nothing else is contributing to your symptoms or needs to be addressed separately.
9) They don't think that they know everything. They know that they don't know everything. They can't predict which H1/H2's will work best for you. They don't know what all of your individual triggers will be, all of the diet and lifestyle changes that might be necessary for you, and so on. They will recommend other classes, supplements, and changes to try based on your symptoms, one at a time (excepting in emergencies) with the understanding that your best treatment plan may look quite different than that of another patient experiencing similar symptoms.
A special PSA about diagnostics: Due to a number of factors, mast cell disorders, especially MCAS, can be very difficult to diagnose, and because laboratory confirmation of elevated mediator release is in many cases not possible, every mast cell-knowledgeable practitioner with whom I'm familiar is quick to recommend appropriate treatment for symptomatic patients. Treatment working is is in fact one of the three major diagnostic criteria typically recognized (the others are, of course, symptoms consistent with MCAS, having ruled out other reasonable causes for these symptoms, and objective evidence of elevated mediator release, which, due to our limited laboratory options at this point in time, many patients even on clearly successful treatment plans will never receive).
Unfortunately, even if you experience symptom improvement from treatment, you may still at some point encounter a doofus. By way of illustration, I have met doctors who told me they were "MASS CELL"-competent practitioners who simply "did not believe in" this diagnosis (presumably because they cannot spell it), and many doctors, on hearing a word they don't know (or a diagnosis they have consistently missed, and then been schooled on it repeatedly by their patients), respond by indicating that they DO understand exactly what the patient is talking about and that it just...isn't. This, and the popular, "but that can't happen" on witnessing something that is, in fact, happening, may be the most ridiculous form of gaslighting that can be found in any quasi-scientific setting.
We as a species like to be right. We can also fall victim to doofus-ry when we encounter patients whose cases do not fit the laboratory portraits we personally backed at the beginning of this period of discovery. Our desire to publish and to be respected in our fields can sometimes get even the best of us, interfering with our ability to do good science, but playing "whose paper was right" with patients' lives is not an acceptable way to practice medicine.
Especially in “new” areas of inquiry like MCAS, even peers in the medical field are not always capable of providing adequate review of research, and this just means we need to work harder and keep learning more. We all want simpler diagnostics, and we all want patients to have access to the best treatment options for their cases. To me, this means WE NEED MORE RESEARCH, and we have absolutely no room to throw out ANY of the evidence (or the patients!) in front of us at any given time simply because they don’t affirm our current assumptions.
A special note because I am EXTRA FRUSTRATED today by the sheer number of patients I've encountered who have been harmed by "specialists" in the first group above: Being a doctor--of any specialty. Full stop.--does not qualify you to identify or treat a mast cell disorder, or in most cases even to help, even a little. LEARNING THE INFORMATION DOES. Doctors can do it. Patients can do it. I am convinced this afternoon to within a reasonable degree of doubt that apes, dolphins, and cats could do it better than some MD's. The overwhelming majority of mast cell patients, because they do not enjoy enjoying being mast cell patients, take it upon themselves to learn the information, identify their triggers, and so on. Unfortunately, most of them can't write their own prescriptions or order the tests necessary to rule out other conditions. (Not skin tests. Not anything that will ever require them to go off antihistamines. Not anything with a contrast agent. Another full stop.) What is taught in medical schools currently about these "new" disorders is something between NOTHING and a few minutes of lecture by someone who knows little more. GOOD PRACTITIONERS OF ANY KIND WILL LEARN THIS INFORMATION ON THEIR OWN BECAUSE THEY WANT TO HELP THEIR PATIENTS, OR THEY WILL REFER OUT (often to the wrong place, because they don't know who HAS learned this information, but...let's not be too hard on this group). Most mast cell patients' treatment plans are very simple. Many never need to see a so-called (yes, I get the irony.) "specialist." But almost ALL of them will at some point need to dump a practitioner who SAYS or who OTHERS SAY is a "specialist" whose recommendations in fact fly in the face of the relevant body of research or institutional recommendations for mast cell disorder patients and who could only endanger an actual mast cell disorder patient. I believe most of these practitioners are legitimately trying to help their patients and are sorely under-educated about these disorders...but a few make do make excellent livings "treating" psychosomatic patients and taking advantage of desperate patients of any kind they can lure into their offices with "root cause" fantasies (see eyes with dollar signs, not legitimately ruling out other likely causes for your symptoms) and/or proprietary cures.
In short, there are a malpractice cost-raising number of practitioners who have roughly as much awareness of these disorders as they do of flying pigs. Following the medical advice of any one of them is akin to seeing an auto mechanic for the treatment of an infected eye or asking your ophthalmologist to fix your transmission. Unless your ophthalmologist happens to know transmissions or your auto mechanic is an ophthalmologist, this won't go well for you. So please, learn what you can, and when it comes to a mast cell disorder, treat any medical professional you encounter as you would an auto mechanic, a nuclear physicist, a flying pig, or anyone else you have no reason to suspect will have any familiarity with your condition. They may have learned, but most likely, this was not part of their occupational training, so you shouldn't expect familiarity. If they're either willing to learn or are already familiar, hurrah! If not, please consult them only about the information they SHOULD know and move on.