This deserves a separate page because it's a particular struggle of support groups who (I think rightly, and admirably) attempt to compile recommendations from their membership. Support groups are a primary source of both information and referral to mast cell-literate medical professionals, and these are often very important for new patients. Unfortunately, I also meet a lot of patients who have been harmed by provider recommendations found in this setting, since they can sometimes be misleading.

First, there are a number of reasons why actual specialists and generally familiar providers may not be recommended or included in compiled lists. 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 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.

Perhaps the bigger issue, however, are the providers who are recommended here or who do make these "lists" and fit into one or more of the following categories:

“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 charts, which will cause these patients' reported symptoms not to be taken seriously by other providers, perhaps while saying something about trying antihistamines 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 is a lot like “specialists” 1-10 but is very willing to prescribe higher risk therapies to anyone who asks for them (or even who doesn't ask for them), even before establishing regular treatment or, more 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, 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 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 various "special" tests and 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 would responsibly treat others, may be quite dangerous, and many of the general huckster variety also intentionally dissuade 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 appropriate 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), my advice is to get this replaced as soon as possible. Even "suspected serious mast cell disorder" or "general mast cell disorder" may be an improvement. Why? Because 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 the flagrant ASM 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. It's not fair, but it's common.

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 don't know 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). Also consider that being diagnosed with a particular mast cell disorder you do not have may be equally harmful in encouraging other providers (who may actually be able to help you) to dismiss your actual mast cell disorder.