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Have EDS or HSD? Why MCAS May Worsen Your Symptoms | Dr. Clair & Dr. Harris

Doctor Clair

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Mast cell activation syndrome may affect up to 70 percent of patients with Ehlers-Danlos Syndromes and hypermobility spectrum disorders, yet it often goes undiagnosed.

In this podcast, Dr. Clair Francomano and Dr. Jim Harris break down how MCAS shows up in EDS and HSD patients, the symptoms to watch for, and the most effective treatment strategies, including antihistamines, mast cell stabilizers, and the low histamine diet. Learn why MCAS is considered the most treatable piece of the EDS, POTS, and MCAS trifecta.

Schedule an Appointment With Dr. Harris' Team at The EDS Clinic: https://www.eds.clinic/

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CHAPTERS

00:00 Introduction to MCAS and EDS
03:18 What Mast Cells Do and History of MCAS
09:09 First Steps If You Suspect MCAS
10:44 Symptoms Across Body Systems
14:51 Anaphylaxis and Hereditary Alpha Tryptasemia
18:37 Root Causes and Common Triggers
23:18 Treatment Strategies and Medications
27:48 Low Histamine Diet and Lifestyle Changes
33:52 Community Questions and Answers

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HELPFUL LINKS:

Schedule an Appointment With Dr. Harris' Team at The EDS Clinic: https://www.eds.clinic/
Ehlers-Danlos Society Healthcare Professionals Directory: https://www.ehlers-danlos.com/healthc...
Low Histamine Food List: https://www.histaminintoleranz.ch/dow...

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Follow Dr. Clair's Channels!

Dr. Clair's YouTube Channel: ‪@DoctorClair‬
Dr. Clair's Instagram: Instagram: dr.clairfrancomano

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#ehlersdanlos #hypermobility #ehlersdanlossyndrome #EDSsyndrome #EDS #genetic #dnatesting #genomics #functionalmedicine #holistichealth #genetictesting

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The information contained in the multimedia content ("Video Content") has been made available for informational and educational purposes only. The Video Content should not be considered a substitute for professional medical advice, diagnosis, or treatment. Always consult with your physician or a qualified health provider for any questions you may have regarding a medical condition. Do not ignore professional medical advice or delay seeking it based on the information provided in the Video Content. All liability for any direct, indirect, punitive, special, incidental, or other consequential damages arising from the use of the Video Content is disclaimed. The Video Content is offered as is, without warranties.

20 Comments

@destinywilliams5763 4 months ago (edited)

I dyed my hair and had a horrible systemic reaction I ended up in the ER for 2 days. The chemicals in the hair dye triggered a monster MCAS. I already have POTS. Praying we all get better and drs help us and not dismiss us

@gymdoll2011 4 months ago (edited)

Dr. Harris and Dr. Francamano are absolute champions

@rightsideupsidedown 4 months ago

I am so grateful for info on mcas and hEDS and other subtypes, and HSD. Ppl are really not informed/recognize about mcas or EDS, HSD or referred out properly in health care systems and I think really suffer needlessly. These videos will and absolutely do change lives. Thank you, Dr Clair, Dr. Harris, Dr. Thorpe, and EDS clinic. 💓

@mamacitaorozco 4 months ago

Both wonderful Drs. Love seeing the collaborative support for our community ❤ thank you

@TraumaTete-a-Tete 2 months ago

I really appreciate this conversation. It really helps us when doctors know our condition! I’ve had ER doctors have to “look up” my disease, and doctor education increases our access to more medications-I take (MCAS meds only) 4 Zyrtec, Pepcid, Montelukast, Xolair bi weekly, 2 vile dose of Sodium Cromolyn, epinephrine, and that took years of figuring out meds and dosage.
I’m one of the rare folks you spoke of… had bad allergies and asthma all my life, started having autoimmune issues after kids, got diagnosed with Lupus SLE, few years later, I was in hospital twice 9 days apart from idiopathic anaphylaxis. Thankfully I was already under an allergists care who asked me loads of questions and ran labs. I was then diagnosed with MCAS and Sjogren’s Disease. Upon seeing a new allergist, I did genetic testing and MCAS tests again. Again, I’m more rare, but my labs were easily positive for HaTS and MCAS. No one needed to debate about me. I also developed POTS. My mother, and two out of three of my kids all have HaTS too. A year ago, my new rheumatologist diagnosed me with HDS. The pieces I never know existed all fit. Changing meds and lifestyle can only help if you know what you’re working with. I’ve had 4 anaphylactic attacks and all sorts of wild issues that get so much better with treatment, and if you are also an autoimmune patient you have to treat both because they play off each other like a horrific ping pong game and you’re the ball. Thanks so much!!!

@methywoz 4 months ago

This is very informative! Thank you for sharing this information and for clarifying this often misunderstood affliction.

@DonnaLawson-b1s 2 months ago

Insurance companies are an obstacle for treatment.

@onebiteatatime70 4 months ago (edited)

My 13 year old has had food allergies, dermatographia, flushing, eczema, asthma since 16 months old. I asked about MCAS since age 2. I was told its rare and she didnt have it. Fast forward to age 11. She got so sick with dizziness, abdominal pain, high heart rate, trouble eating, swallowing, sleeping, huge purple circles on her legs, pain between her shoulders. She was diagnosed with EOE and dysautonomia. Finally at age 13 she was diagnosed with MCAS after a bronchospasm and spontaneous anaphylaxis while playing volleyball. She is now on treatment and improving. Her tryptase was never elevated but her igg and ige have always been high. We have been in a Pots program and seen by 15 doctors. Not one of them suggested MCAS or advised us to see immunology. I had to seek this out on my own. She has ijssed 2 years of her life. This could have been avoided if someone would have listened to us years ago.
She also nkw has been diagnosed with HSD.

@patriciaherlevi6217 4 months ago

Is it possible to have MCAS episodes throughout one's lifetime and then feel healthy again, only to repeat the condition years later because of being infected by Shingles, COVID, or Lyme?

@destinywilliams5763 4 months ago

I wish I had this Dr

@mjcronin430 6 days ago

This was amazing information! Thank you.
A major challenge is finding any specialist willing to coordinate care. They refuse. We have currently seen 33 providers so far. We have been discredited, yelled at and dehumanized by several providers part of Tertiary Care Facilities. No one will hear about possible EDS, HSD or MCAS!
We already have multiple vascular compression syndromes and ASD (high functioning).
So very hard on us.
So hard. 😢😢😢

@thehansons5 4 months ago

Thank you for the great information! I would love to hear more on mast cells and gynocological issues.

@priestley0410 4 months ago

Really informative and interesting ! Many thanks for this…

@VelvetElvis1 3 months ago

Thank you, Docs and Host. 🌻

@KiwikimNZ 3 months ago

So interesting. Thank you for your knowledge and your genuine concern for those who are finding it hard to get a diagnoses. I have been down all different routes to try get answers, times that I should have presented to the hospital I didn’t as I felt so unwell and also didn’t want to make a fuss. This made total sense. Appreciate this so much. ❤

@HouseKatArmy 1 day ago (edited)

I wish the EDS clinic was seeing patients in Vermont...i have had some decent luck recently with docs who do take me seriously and understand that I am not just inventing things, but they don't always understand the extent of the problem

@Brittney3333 3 months ago

I am waiting to see a who can diagnose me with EDS. I asked my pulmonologist if she can test me for MCAS and no. She said that even if I have EDS they will not diagnose it because there is nothing anyone can do about it. She also said that I really need to be tested for lupus because it can be treated. I have been tested so many times it's not funny at this point. I'm 50 years old and I want a doctor who believes me and cares about their patients.