Mast Cell Activation Syndrome: Are we barking up the wrong tree?
This is a question that’s been on my mind for a long time now. And I know I’m not alone in this, as several patients and colleagues have also brought up this topic.
Are we too busy focusing on the diagnosis or label of MCAS? Does the diagnosis even really matter?
There are a few arguments for reasons that the diagnosis really does matter. One is that the diagnostic process helps rule out the scary stuff that could require immediate treatment… things like pheochromocytoma and carcinoid tumors. That being said, these conditions are very rare. And the overwhelming majority of conditions on the “differential diagnosis” consideration lists that are published in the literature are conditions that are often chronic co-morbidities in patients with MCAS—things like thyroid disorders, celiac disease, GERD, parasitic infections, eosinophilic esophagitis, anxiety and depression, headaches, chronic fatigue syndrome, chronic urticaria, fibromyalgia, and POTS, to name a few. Most patients with true lab-confirmed “MCAS” have a smattering of these (true, lab-confirmed) additional conditions by the time they are diagnosed with MCAS or in the months following diagnosis. So, I find it hard to justify the futile time, money and resources spent on the diagnosis of MCAS based solely on the logic of that premise.
Another (possibly more relevant) argument for the importance of “getting the diagnosis” figured out is that patients need the validation of having a name for their (often widespread and chronic) suffering. They feel that they need something concrete to show their family members and friends (and sometimes even themselves) that they aren’t crazy. They need an overarching diagnosis (that zooms away from the conventional medicine focus of one system) to explain why so many of their physiological organs and systems are in disarray simultaneously.
Because so many patients find themselves unable to work due to disabling symptoms, the diagnosis is also hugely relevant in terms of patients applying for disability and other supportive benefits to keep them afloat. I completely understand these perspectives and empathize with fellow patients. And I also understand that a small subgroup of patients do not respond to over-the-counter medications like antihistamines, and are limited in treatment options to get things calmed down without a diagnosis. But is this doing us a dis-service in the long run? Are we wasting too much time and energy on the diagnosis, when we could be focusing instead on finding the root issues and healing?
Do we have tunnel vision in our perception of the role of mast cells?
One could also argue that MCAS is not really a separate disease, but rather a state of system-wide inflammation triggered by the perfect storm of epigenetic changes and environment, involving dramatic mast cell dysfunction… in addition to a plethora of other cells that are likely not functioning properly. Have we spent too much time and energy in the quest to demonize mast cells? While targeting them may undeniably help mask symptoms, is this really the right approach?
Which leads me to my next question….
Is a mainstream medicine approach to MCAS truly helping patients?
Obviously, there’s a huge spectrum of patient scenarios here, and there are patients who are continually in a state of anaphylaxis, seizures and other issues that require very careful supervision and monitoring. The mainstream approach is to make the diagnosis and then find medications that alleviate symptoms, but it does not unearth WHY the symptoms are there in the first place. Medications may be necessary early on, but my opinion is that the goal should be to transition to more natural alternatives (and eventually to nothing at all) over time as the system heals.
Is a functional medicine approach the best route?
When we look at functional medicine, we find an approach that evaluates different health stressors in order to tease out what the underlying issues are, so that patients can focus on the root problem and decrease their inflammatory cascade (and subsequently see a reduction in mast cell activation, normalization of blood glucose and hormones, healing of the gut, etc.) Many functional medicine providers investigate the following areas: toxic burdens, infectious disease in the form of bacterial and viral infections, gastrointestinal health (including candida, SIBO, leaky gut, parasites, protozoal infections, and more), metabolic and hormonal abnormalities, endocrine issues, nervous system and neurotransmitter abnormalities, nutrients, and genetic/methylation factors.
The question I have is this: Is identifying these issues one-by-one truly the best and most cost-effective approach that will unlock the most healing potential? A lot of these tests are expensive; for example, one round of testing may cost the patient $500-1000 out of pocket, only to affirm that yes, the patient does indeed have SIBO and leaky gut. Following those diagnoses, the patient will then need more money (and discipline) to embark on treatment and subsequent testing, and may spend 6 months to one year focusing on that particular issue, before moving on to the next one.
Don’t get me wrong, I am a huge fan of functional medicine. But what I’ve noted in clinical practice is this: most patients don’t just have one or two functional medicine diagnoses—they often have a dozen of them all at once. So where do we even start? What is the best approach to restore homeostasis to the entire system and subsequently alleviate or eliminate mast cell activation in the process?
Allostatic mechanisms are designed to maintain homeostasis, and they involve the neurological system, the immune system, and the endocrine system (and their complex interactions). Proponents of the allostatic load response theory suggest that making changes like eliminating toxins and having a perfect diet will force the patient to live in a glass box; conversely, they believe that no single stressor is more important than the other. For example, they claim that too much gluten is not more inflammatory than a single negative thought; all of the different factors influence our system.
Thus, in order to restore homeostasis in the body, practitioners ought to help patients in a number of ways simultaneously: reducing environmental stressors and avoiding toxins is not a bad place to start, but it’s also essential to instigate supplemental therapies, dietary changes, etc. that will address key metabolic imbalances seen within the systemic allostatic load in patients who are chronically ill. This could also include dealing with insulin resistance, inflammation, acidosis, emotional trauma, patterns triggering dysautonomia, micronutrient deficiencies, etc. that contribute to the global dysfunction.
To me, this equates to a “modified functional medicine” approach in patients who are chronically ill. This equates to an approach that reduces the emphasis on the diagnosis or label and empowers the patient to restore homeostasis with a number of different tools way beyond the scope of mast cells, and without breaking the bank. I’m excited to open up my practice, Origin Wellness, in the spring of 2020 and look forward to sharing more about this approach in future posts.
