Support Group Considerations
Support groups, whether online or in person, can be gold mines of spot-on advice, support, and ideas for patients, and I recommend you find whatever positive support you can as you embark on any "rare" disease journey. Groups are frequently the best sources of information and community available to rare disease patients. 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.
However, sometimes, support groups can be challenging to navigate and interactions here can cause harm.
First, see some particular cautions about finding a provider in a support group.
In general, 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 molded their choices around bad advice, 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). While they may 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. (Note that 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 “years.”) When you consider why most patients on successful treatment plans might not remain in either in-person or online support groups to share their approaches with every new person who joins the group, it's easy to see why a high percentage of support group participants might instead be there if not to sell things, then to justify and find support for their mistaken beliefs or their commitment to failed treatment plans.
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 frequently among the most active group members.
Being "sick" 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. Sadly, 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 many cases, the most vocal with advice) instead have:
histamine intolerance
"diagnosis” and “treatment” from a mistaken “specialist," 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 my symptoms!" announcements on a regular basis.)
Not sure if you might fall into one of these categories yourself?
If DAO 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 cutting out the allergens you found on one of those handy dandy blood IgE panels eliminated your symptoms: Excellent! That's clinical and laboratory confirmation that you have allergies. But if you cut your allergens and other things are still causing reactions for you, though, this is a good sign you may be dealing with a mast cell disorder in addition. This is the difference between an allergen and a mast cell trigger: A true allergen will pop up in your IgE panel. If you suffer from a mast cell disorder, your mast cell triggers will not.
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 look 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 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 sadly is not an exaggeration), this also goes for basic information about the disorders and terminology, classes of drugs, symptom management, and so on. Regrettably, the patient is often not in a position to know which answers are providing accurate information and which are wildly dangerous, as many of the people who offer the most inaccurate information sound the most confident in their knowledge. Consider the following.
Examples of inaccurate information that sounds convincing, affirms the patient's current understanding, or offers 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 treat 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 are 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 several decades is not treatment. (Remember that NO form of SM can be diagnosed or pointed towards or is classed based on symptoms. 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 will never present with even close to normal tryptase. It's also extremely rare. Those people who identify as having an ASM diagnosis because they have serious symptoms but who do not meet the criteria in a 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, or are 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 ballgame and should not be expected to present with classical mast cell symptoms at all, but is also extremely 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 or suspected 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 by the body, so it doesn't have the ability to slow down or prevent worsening systemic reactions, and it is not for (even close to) every patient 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 this 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 Treatment FAQ's) 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 plenty of) 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 can be a bandaid when used inappropriately. It won't stop the damage intentionally 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, and so on, if these are not coming from external triggers, and in some cases, it can fool a well-meaning patient into believing that since they're no longer, for example, immediately vomiting their trigger foods, that they are on adequate treatment.
The overwhelming majority of MCAS (which comprises most mast cell) patients will always have normal tryptase, even in a reaction. If your tryptase is sufficiently elevated, testing for other conditions is called for.
Diagnosis is complicated, particularly with MCAS. It is always important to rule out other causes (blood and possibly urine tests, if neuroendocrine tumors/carcinoid are a possibility), to 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 rare to confirm a diagnosis of MCAS without treatment helping, and if treatment still isn't helping noticeably to improve the patient's symptoms, 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. Bad news: Support groups are full of people who have successfully treated these conditions who believe they treated a mast cell disorder.)
DAO addresses histamine intolerance, not MCAS or SM. Mast cell disorder treatment is significantly more complicated. You may, of course, suffer from both, and if you are an mast cell 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.
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 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 from non mast cell patients or invented as surreptitious marketing ploys) offer what sounds like a simple and relatively quick solution that's more palatable than the complicated, individual process needed to address any complex disorder. 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 different monkeys. 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 tests, are a differential diagnosis for MCAD. That means they're something to rule out, and while you can certainly suffer from a mast cell disorder and allergies concurrently, confirmation of a high number of allergies in no way suggests the presence of 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, 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) in exchange for sharing 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.