Bully ON the Block: Mast CEll Activation Syndrome and Its Implications for the Eating Disorder population
It’s no secret that immersion in and recovery from an eating disorder typically brings a host of physical discomforts, including gastrointestinal distress, mood shifts, bodily aches, and other ailments. But what is becoming more clear in recent literature is that these conditions are not necessarily driven by the eating disorder alone; in 20-25% of cases, they may also be indicative of an underlying immune condition called Mast Cell Activation Syndrome that afflicts the eating disorder population in numbers larger than the general population.
What is Mast Cell Activation Syndrome?
Mast Cell Activation Syndrome (MCAS) is a disruption in the normal functioning of the immune system where a type of immune cells, called mast cells, release larger than normal amounts of chemical mediators, or histamines, in response to a variety of external stimuli, including food, stress, and other environmental factors. While the origins of MCAS are still unclear, studies point to underlying genetic mutations that are triggered by a stressful event, like the starvation state of an eating disorder. Because mast cells are located throughout the body, particularly in areas that interface between the internal and external environments, a large number of organ systems can be impacted by MCAS, making it difficult to recognize and diagnose.
What are the Symptoms of MCAS?
Patients who suffer from MCAS may experience symptoms in 2 or more organ systems and may mistake physical symptoms for other conditions. In the gastrointestinal tract, symptoms may include diarrhea, constipation, general abdominal discomfort, GERD, bloating/distension and cramping. Neurologic MCAS symptoms may mimic other conditions and appear as OCD-like thoughts and behaviors, mood swings, depression, anxiety, insomnia, and fatigue. Some people who suffer from MCAS experience more typical allergy-like symptoms including wheezing, rashes, hives, skin flushing/itching, and sinusitis. Other skin conditions like cysts, cystic acne, and edema are also common occurrences. Reactions to heat, altitude, alcohol, artificial dyes/additives and certain environmental allergens like pollen and mold all fit under the MCAS umbrella of symptoms. Reproductive system conditions like unusual menstrual cycles and endometriosis; fibromyalgia-like joint pain; and blood pressure/heart-rate dysregulation are all possible symptoms as well. Indeed, MCAS can and does exist alongside other common conditions like IBS, mood disorders, SIBO (Small Intestinal Bacterial Overgrowth), POTS (Postural Orthostatic Tachycardia Syndrome) and others, making diagnosis complex.
How is MCAS Diagnosed?
There are currently two schools of thought for diagnosing MCAS, commonly referred to as Consensus 1 and Consensus 2 criteria. Consensus 1 criteria guidelines are much more stringent and have the potential to miss up to 80% of MCAS cases. This criteria involves a lab test to measure tryptase levels in the blood, but the test must be performed within 4 hours of the onset of a flare, and most labs are not equipped to perform this kind of testing. Consensus 2 criteria includes the presence of symptoms in 2 or more organ systems AND responsiveness to the medication regimen commonly prescribed for MCAS patients. Consensus 2 criteria may also take into account lab tests and relies on the Mast Cell Activation Syndrome Questionnaire to help narrow down the likelihood of its presence.
How is MCAS Treated?
The goal of MCAS treatment is to stabilize the mast cells so they do not release such a large volume of histamine in response to stimuli. Over-the-counter mast cell stabilizers include H1 Blockers (Allegra, Claritin) and H2 Blockers (Pepcid AC, Tagamet), and the antioxidant flavonoid Quercetin. Prescription medications include Sodium Cromolyn, Ketotifin, and Low-Dose Naltrexone. Reduction of exposure to known stimuli is also considered first-line treatment for MCAS.
Special Considerations for the Eating Disorder Population
Working with an eating disorder clinician who has awareness of MCAS can be critical in receiving effective, comprehensive care. Because eating disorders are already restrictive by nature, working with a clinician who helps to find the right balance between limiting known trigger-foods while medications are kicking in and maximizing food/nutrient intake is key in treatment. Because all foods induce a release of histamines, following a low-histamine diet is not typically warranted for patients who suffer from both MCAS and eating disorders. Many patients who suffer from MCAS have seen an overwhelming number of specialists, including endocrinologists, dermatologists, gynecologists, naturopaths, and others who may have missed the overarching MCAS diagnosis and/or may not be well-versed in eating disorder care. At worst, patients may have experienced medical skepticism at the legitimacy of their symptoms. Because MCAS flares often increase in adolescence, the condition can also be the trigger for an eating disorder, and not merely the fallout from one.
Bottom Line
MCAS is a complex illness that can make eating disorder care and treatment even more nuanced. Working with a clinician who has a working knowledge and understanding of both conditions can mean the difference between timely, effective, safe care and more prolonged suffering/poorer outcomes. Contact Amy to learn more about how she can assist in evaluating and treating both diagnosed and suspected MCAS in conjunction with eating disorder treatment.