EDS Conference: MCAS
"Like you have the flu all the time (tired, cold, hot, pain)" -- Dr. Pradeep Chopra
I was so glad that they had multiple MCAS talks at the EDS conference -- so many of us have this comorbidity and just don't know it yet! In fact, as Dr. Maitland told my mom after the talk, EDS can actually be caused or worsened by MCAS because mast cells can release enzymes described by Dr. Maitland as "meat tenderizers." I personally thought all of my problems were from EDS, but am learning more and more that POTS and MCAS especially are actually responsible for most of my worst symptoms. Even my joint pain has decreased significantly since starting MCAS treatment.
For starters, you'll find the video from Dr. Maitland's talk below and her slides here.
Dr. Anne Maitland is an allergy specialist just north of NYC who has been spearheading some of the MCAS research in the US. Here are my notes from her talks:
50% of people have some sort of mast cell problem (allergies, hives, food intolerance, etc) -- probably because of our sterile environments, indoor lifestyle, chemicals...
MCAS can have a genetic component as well as environmental triggers and immune dysregulation
immune dysregulation can cause connective tissue issues -- dogs breeds more sensitive to certain foods or other allergies are more likely to rupture a ligament!
It's possible that the EDS genes can make you more susceptible to MCAS, but she thinks it's mostly that MCAS produces enzymes that damage joints (there's still no identified gene for hEDS -- hypermobility type -- so this could be all MCAS??)
MCAS is very difficult to diagnose -- may not have lab results to support it
doctors tend to put test results before the patient's story --> many patients now experience PTSD in addition to MCAS, because of not being believed by doctors
Most doctors are well-educated in T/B cells, but not mast cells
she looks for patients with EDS/POTS who've been sent for allergy workups (most likely MCAS)
There's also a belief that if you can't measure it, you can't treat it -- this is NOT the case for MCAS... many patients improve on treatment without having a diagnosis
Don't make a molehill out of your mountain! Many patients are so overwhelmed by the bad symptoms that they never mention the small things like itching, sneezing, shellfish allergies, mild persistent cough, or bad insect bites -- these are important for diagnosis
**remember to write down "nuisances" as well as the larger symptoms
We have ruined our environments, and voluntarily expose our bodies to chemicals and other toxins. We are tricking our immune systems, which are designed to protect against these toxins.
Embrace elimination diets (as long as you can still get nutrients), but also be aware that only some of the toxins are ingested -- think about what's being absorbed through lungs/skin
Mast cells also have hormone receptors, so people (like me) with hormonal problems like PCOS etc may be triggering MCAS through hormones
Mast cells are helpful! But they can call an "ambulance and fire truck, or SWAT team," and you don't want them mixing up which one they call
MC are not always overactive -- they may also not activate when needed, for example allowing recurring fungal or sinus infections (*both have been lifelong struggles for me)
Itching/hives, GI, and psychiatric are the most common MCAS symptoms
Zolair, acupuncture, and histamine blockers
Amitryptiline is H1, H2, and H3 blocker
Some meds (like zantac) might not work because of dyes/stabilizers -- try a different brand
Mast cell disorders are often secondary, so it may be necessary to diagnose and treat an underlying cause like autoimmune disorders
SSRI's may also be helpful
Unfortunately, patients need to do a lot of the work themselves -- screen yourself, track your symptoms, do research, learn your triggers
For anyone wanting to learn more, here is a very thorough and clear article by Dr. Dempsey, another MCAS specialist in NY. Each MCAS expert has a slightly different take (since the research is so new), so it can be helpful to read different perspectives.