Last reviewed October 31, 2026
The summary
Mast cell symptoms deserve treatment, even mild ones.
Mast cell symptoms usually travel with some hypermobility and dysautonomia.
Treatment usually starts with simple, low-risk steps: knowing your triggers and antihistamines under a doctor's guidance.
A normal lab test does not always rule out a mast cell problem.
I've treated EDS in my own family across three generations, including my son. I watched his joints, his blood pressure and his reactions get handled by different doctors who never talked to each other. That's what taught me these problems have to be treated together. If you've lived that too, this guide is for you.
Mast cell activation syndrome (MCAS) is when your mast cells, a type of immune cell, release chemicals like histamine too easily. That can cause flushing, hives, itching, gut upset, dizziness and more, often in several body systems at once.
Many people are told their mast cell symptoms are "not bad enough to treat." I disagree. Mast cell symptoms usually travel with some hypermobility and dysautonomia, such as POTS. In my medical practice focused on individuals with mast cell symptoms, I build one plan, in four steps, that I walk through below.
In this guide:
What is MCAS?
If you react to things other people shrug off, like heat, perfume or a glass of wine, mast cells are a likely reason. Mast cells live in your skin, gut, lungs, blood vessel walls and connective tissue. Their job is to sound the alarm when something harmful shows up, which they do by releasing chemicals called mediators, such as histamine, tryptase and prostaglandins.
In MCAS, mast cells react to things that should not set them off. Common triggers include heat, stress, certain foods, alcohol, fragrance, exercise, hormone shifts and some medicines.
MCAS is different from mastocytosis, where the body makes too many mast cells. In MCAS, the number is usually normal, but the cells are too reactive.¹
What are the symptoms of MCAS?
Symptoms often show up in two or more body systems at the same time.¹ ²
What do MCAS skin symptoms look like?
Flushing, especially of the face and chest.
Hives.
Itching, with or without a rash.
Swelling of the lips, eyes or face.
Dermatographism, where a light scratch leaves a raised red line.
Other common symptoms
Belly pain, bloating, nausea and diarrhea.
Reflux.
Nasal congestion, wheezing or throat tightness.
Dizziness, fast heart rate or low blood pressure.
Headaches, brain fog and fatigue.
Reactions to many foods, smells or medicines.
If you ever have throat swelling, trouble breathing or fainting, seek emergency care right away.
How is MCAS tested?
There are two main sets of criteria, and experts disagree about which to use.
The stricter set. You need typical symptoms in two or more body systems, a rise in tryptase during a flare of 20% plus 2 ng/mL over your baseline, and a good response to mast cell medicines.¹ For example, with a baseline of 5, a flare level above 8 counts.
A broader set. It leans more on other mediators, such as urine histamine or prostaglandin markers, while Valent prefers a tryptase rise.² Many allergists do not accept this broader set.
A good response to medicine supports the diagnosis. Personally, I try not to do excessive testing with my patients as these tests frequently are either inaccurate or do not catch the patient when they are in a flare. While I will do testing, I most importantly like to focus on my patient’s symptoms and their response to medications.
Common lab tests include:
Serum tryptase, best drawn within 4 hours of a flare and compared with a baseline level.¹
Urine tests for N-methylhistamine, prostaglandin D2 metabolites or leukotriene E4.
Blood tests to rule out other causes.
Why are MCAS test results often normal?
This is one of the most frustrating parts of MCAS. There are a few reasons:
Timing. Mast cell chemicals break down fast. If blood or urine is not collected during or right after a flare, the rise is missed.
Handling. Some samples need to be kept cold and processed quickly.
Different mediators. Your mast cells may release more of one chemical than another. One test may miss what another would catch.²
Strict cutoffs. Experts still debate how strict the criteria should be.¹ ²
A normal test does not always mean you do not have a mast cell problem. Your history and how you respond to treatment matter a lot.
Where does MCAS treatment start?
Most people start with a few simple steps rather than strong medicines, and any medicine should be started or combined under a doctor's guidance, since doses used for MCAS can differ from the label.
Know your triggers. A two-week log of foods, heat, stress and symptoms helps.
H1 blockers. These are long-acting antihistamines, the kind used for allergies.
H2 blockers. These are a different type of antihistamine, often used for reflux. Together with H1 blockers, they cover more of histamine's effects.
Mast cell stabilizers. Medicines like cromolyn and ketotifin or supplements like luteolin, quercetin, or rutin help keep mast cells from releasing their chemicals.
Other options for people who need more, chosen one person at a time.²
Why treat mild to moderate symptoms?
I strongly believe that mild to moderate symptoms of MCAS should still be treated, particularly in hypermobile individuals who experience joint instability. Researchers have increasing reasons to believe that enzymes from mast cells may break down collagen and connective tissue.³ If that is true, it matters most in people whose connective tissue is already fragile. Calming mast cells may also ease dizziness, gut symptoms and fatigue.
One pattern I see often is a patient whose flushing, itching or stomach upset seemed too mild to matter. I begin with one or two medicines at low doses and a few trigger changes. Over the following months, many of them notice better sleep, fewer flares and more energy, and that makes it easier to keep up with physical therapy and strength work.
I have also seen plenty of cases clinically where my patients see a reduction (though not a complete resolution) in their joint laxity from treating their MCAS symptoms alone — even before they have begun our strength and rehab protocols.
Does a low-histamine diet help?
It can help some people, but it is not a cure. Foods like aged cheese, cured meat, wine, fermented foods and leftovers that sat a long time can be high in histamine. Some people notice fewer flares when they cut back.
My advice:
Try it for a short time, such as 2 to 4 weeks.
Track your symptoms.
Add foods back one at a time.
Do not stay on a very strict diet long term without support. Narrow diets can lead to poor nutrition.
The research on low-histamine diets for MCAS is limited. I use it as a tool, not a rule.
Diet and nutrition is a topic I get involved in heavily with my patients as they tend to have additional issues with Gastroparesis from Dysautonomia, or issues with FODMAP’s from things like Small Intestinal Bacterial Overgrowth. The diets for Gastroparesis, SIBO, and MCAS are all slightly different but also share many overlapping qualities. This can be confusing for many patients, which is why we place such a large emphasis on diet and nutrition through our treatment.
How is MCAS linked to EDS and POTS?
MCAS shows up with EDS and POTS more often than chance would predict.³ Research is still working out why, so this is the working model I use:
Mast cells —> connective tissue. Mast cells sit in connective tissue. Researchers have proposed that the enzymes they release when overactive may break down collagen.³ This could make loose tissue looser.
Mast cells —> blood vessels. Histamine and other mediators widen blood vessels, which may add to dizziness on standing. Mast cell activation has been described in a group of people with POTS who also have flushing.⁴
Connective tissue —> mast cells. Changes in connective tissue may in turn affect how mast cells behave.³
For MCAS, this means antihistamines alone may not be enough. If POTS and joint problems keep you inactive and stressed, flares can keep coming. In my patients, every one has some hypermobility, some dysautonomia and some mast cell symptoms. That is my experience, not a proven rule for everyone with MCAS. Here's what treating them together can look like.
A story typical of what we see
Picture a woman in her early 40s who comes to us flushing and getting hives most weeks, eating fewer than a dozen foods, and sleeping poorly. Every new medicine seems to cause a reaction. We start low and go slow, building a combination of a few medicines at lower doses, and give her a plan for flares and for stressful events. Over most of a year, she adds several foods back, sleeps through most nights, and has more energy to exercise. She still has reactions sometimes, but they are milder and she knows what to do.
This is a composite of patients we see, not one real patient, and details have been changed. Everyone's progress is different.
How we treat MCAS in our practice
Here are the four steps I mentioned at the top, and how they play out for MCAS:
Stabilize. Calm flares with antihistamines and, when needed, mast cell stabilizers.
Build Control. Learn your triggers and reduce exposure.
Build Capacity. Strengthen the body once flares are quieter. Exercise is easier when mast cells are calm.
Expand Function. Widen your diet, activity and daily life.
How we approach MCAS
These steps rest on a few beliefs, built from what I see in my own patients.
Start low and go slow. Many of my patients react oddly to medicines, even ones meant to calm mast cells, so I start at small doses and build up.
Several low doses usually beat one high dose. Most of my patients end up on two to four medicines at lower doses, each covering a different system mast cells affect. Symptoms tell us which ones to try first.
Expect it to take months. Finding the right mix is trial and error, under a doctor's guidance.
One plan is not enough. Patients get four: a daily baseline plan, a flare plan for bad stretches that last days, an acute plan for sudden reactions, and a buffer plan to use before stress you can see coming, like travel or a move.
When MCAS calms down, everything else gets easier. In my patients, exercise tolerance often improves, which helps joint stability. Diets can widen, and sleep often gets better, which can ease dysautonomia.
If you're wondering what working with me actually looks like, here are the questions I hear most often.
Frequently asked questions
How is treatment at Hypermobility Medicine different? I treat mast cell symptoms as part of a bigger picture, in a practice built around four things that are hard to find together. First, we understand it from the inside, because my own family lives with hypermobile EDS and the mast cell problems that often come with it. Second, everything is under one roof. I look at your mast cell symptoms, dysautonomia and joints in one plan, and I also address sleep problems and GI dysfunction, since an MCAS or dysautonomia component is typically driving them. For patients whose issues stem from the cervical spine, our team reviews eye imaging to look for signs of raised pressure in the head. And most importantly, strength and rehab coaching is built into the practice. That brings me to the third point: I am trained in the principles of biomechanics and rehabilitation along with medicine, so the way you build joint stability is part of your medical care, and we share that guidance with your physical therapist. Fourth, our care is longitudinal: we start with a two-hour diagnostic visit, and members are then seen about every 60 days, with electronic check-ins about every two weeks so we can adjust your plan as your symptoms change.
How much does it cost, and do you take insurance? We are out of network and self-pay, so we do not bill insurance for visits. The diagnostic visit is $1,500. Membership is optional and costs $425 a month, or $385 a month on the annual plan, and if you join, the diagnostic fee covers your first month. You can still use your insurance for the medicines I prescribe and the imaging and labs we order, and you will find full details on our Services page.
What happens at the first visit? Your first visit is a two-hour diagnostic visit where I look at your mast cell symptoms alongside your nervous system and joints. I take a careful history of your reactions, what seems to set them off, and how your skin, gut, breathing and energy symptoms have changed over time, and we review your past test results, imaging and the medicines you've tried. Afterward you receive a written care summary with a phased plan that you can share with your other doctors.
Do you offer telehealth, and can you see me if I'm not in New York? Yes, we offer telehealth for patients who are physically in New York State at the time of each visit, and we see patients in person near Albany, New York. If you live in another state, you can still travel to New York to be seen in person. Because we are licensed in New York, we cannot yet see you while you are in another state, but more states are coming soon, and if you join our waitlist we will let you know when we can see you.
How do I get started? You start by booking a 20-minute complimentary intake call through our contact form. Our office follows up to set up the call, which is not the diagnostic visit, so we can learn about your reactions and your history and see if there's a mutual fit.
Work with our practice
If this sounds like you, you don't have to sort out your reactions, your heart rate and your joints one specialist at a time, because I look at all three together.
What happens next: this button opens a short contact form, and our office follows up with you. You'll find pricing on our Services page.
Outside New York? You can travel here to be seen, or join our waitlist and we'll let you know when we can see you in your state.
Not ready for a visit? Get Beyond the Joint: one short weekly email of doctor-written articles on hypermobility, POTS and MCAS and how they connect, plus a heads-up when we add new states.
This guide is for education and is not medical advice for your situation.
References
Valent P, et al. Definitions, criteria and global classification of mast cell disorders with special reference to mast cell activation syndromes: a consensus proposal. Int Arch Allergy Immunol. 2012;157(3):215-225. PMID: 22041891. doi:10.1159/000328760
Afrin LB, et al. Diagnosis of mast cell activation syndrome: a global "consensus-2." Diagnosis (Berl). 2021;8(2):137-152. PMID: 32324159. doi:10.1515/dx-2020-0005
Seneviratne SL, Maitland A, Afrin L. Mast cell disorders in Ehlers-Danlos syndrome. Am J Med Genet C Semin Med Genet. 2017;175(1):226-236. PMID: 28261938. doi:10.1002/ajmg.c.31555
Shibao C, et al. Hyperadrenergic postural tachycardia syndrome in mast cell activation disorders. Hypertension. 2005;45(3):385-390. PMID: 15710782. doi:10.1161/01.HYP.0000158259.68614.40
