Histamine Intolerance the same as MCAS?

I have had histamine intolerance since I was born with migraines. It was discovered in the early 50s by my allergist when my Mother decided to find out what caused my migraines. So it has been around for awhile. (I was supposed to develop a migraine from an injection based on my body weight. I passed out.) The Dr. gave me ever increasing shots of Histamine that summer and I was cured.

I urge you to watch this video on "Autoimmunity & MCA in Dysautonomia." You have many of my symptoms... Dr Brent Goodman, Mayo Clinic, says MCAS is very common in those who have Sjögren's Disease. BTW, have you experienced any episodes of Presyncope or Syncope (which could indicatePOTS)? Here' the info promised above...
Dr. Brent Goodman, Director of the Autonomic Lab at Mayo Clinic's Scottsdale, AZ campus, presented this lecture on autoimmunity and mast cell dysfunction in dysautonomia during Dysautonomia International's 2017 Conference.

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Hello!

I have mast cell activation syndrome (MCAS) and I am also histamine intolerant. There are two important genes involved: HNMT & AOC1. Through my own genetic testing I have discovered I I have the affected alleles for both of these genes. N-methyltransferase (HNMT) affects breakdown of histamine in the central nervous system and AOC1 gene encodes for DAO, the enzyme responsible for histamine breakdown in the gut. I also have MTHFD1 gene variants that affect my methylation system of which HNMT is highly dependent. In a nut shell, my system is like downtown NY City in the middle of rush hour - a lot of roadblocks that push my system to use less efficient back alley side routes to keep the system flowing and functioning.

It is through a deep dive into my own genetic profile, tracking of symptoms, awareness and endless pursuit for knowledge on this topic that I've learned to manage, discuss, cope and accept life/health with MCAS and histamine intolerance. I've read so many medical journals, books, videos, podcasts on the subject. I highly suggest the following book by scientist Debbie Moon, her book can be found on Amazon: "Histamine Lifehacks: Histamine in Balance: From Biological Roles to Managing Histamine Intolerance".

Debbie does a nice job discussing and explaining the topic in terms that most can understand. She is also the creator of the website GeneticLifeHacks.com of which I seek advice almost daily. Debbie says, "histamine intolerance is a term that is applied mainly to reactions to histamine from food" she further explains, "MCAS takes histamine-related symptoms to a more systemic level ... the body's mast cells release excessive amounts of histamine [and heparin] leading to a wide array of symptoms."

Personally, I've come to manage my symptoms with the use of 1) awareness 2) low histamine diet 3) H1+H2 antihistamine blockers when needed 3) supplements suitable for my individual needs and 4) chemical avoidance as much as possible e.g. PFAS, VOC, BPAs, fragrance and 5) never stop learning.

Occasionally I will have a significant flare-up and drag on my system. Most recently, over the past year, I've been really struggling with MCAS/histamine and couldn't put my finger on exactly why. But just recently I found what I've come to believe is the cause of probably the worst MCAS flare I've ever experienced - this flare-up I had heavy bleeding (both nasal and vaginal), migraines, brain fog, sleep disturbances ... and I want to share my story so others may also become aware of a hidden trigger ... the INACTIVE INGREDIENTS in the food and drugs we consume.

I am post menopause 3 years (should not have vaginal bleeding) and I have been on hormone replacement therapy HRT for over two years. I did not tolerate the oral form of estrogen well so I switched to patch form. I am also prescribed oral micronized bio-identical progesterone "Prometrium" in generic formulation. The inactive ingredient (the carrier oil) in the "commercial pharmacy" bio-identical progesterone HRT that I was prescribed is PEANUT OIL and SOY OIL. Yes, the very HRT - micronized progesterone - that is generally mast cell stabilizing, has two INACTIVE ingredients that are know allergens for many - peanuts and soy. After my 'lightbulb' holy crap moment - It's the peanut oil/soy oil causing my symptoms - I reached out to my prescribing physician and asked that she send my prescription to a compound pharmacy to formulate a 'histamine/MCAS friendly' progesterone formula.

I have been taking the compound formula (without allergens) for a week now and my symptoms have significantly improved - no more bleeding, brain fog, migraine ... NOTE: I do not have a IgE peanut allergy and this is something that is important to know ... MCAS is not the same as a true IgE allergy - I did not test positive for a peanut allergy or IgE positive for the countless other things I know trigger an MCAS/histamine drag/flare-up for me.

What I learned this episode ... 1) pay attention to the inactive ingredients - they could be the most active in a body with MCAS/histamine intolerance 2) most doctors do not know a lot about MCAS and many know nothing - not that they won't help they don't understand 3) if you suspect your meds are making you sick talk to your pharmacist and be open to a compound pharmacist - they will most-likely understand, listen and help guide you 4) mast cells release both histamine and heparin - a natural blood anticoagulant - hence my heavy bleeding. 5) NSAIDs also slow blood clotting - taking NSAIDS during my flare did not help my bleeding and 6) antihistamines usually help but the flonase I was using was drying my nasal passages which lead to the severe posterior nose bleeds I was experiencing.

MCAS is a crazy and sometimes uncomfortable journey but do know you are not alone. There are others who are here to help and support. This thread and Mayo Connect website is proof. Be well and be your best ... 🤎

For more information:
https://www.geneticlifehacks.com/mast-cells/
https://www.geneticlifehacks.com/histamine-intolerance-genetics-part-2/

Hello Dixieland, the post you made was a few years ago and over this time I hope you have found help, guidance and understanding for your health and wellness journey. I share many of the same gene variants that you do in terms of HNMT & AOC1 (which encodes for the DAO enzyme found in the gut). I made a general post with a bit of my story to this thread but I wanted to offer empathy and compassion to you directly. As I mentioned, we are not alone on our journey although sometimes it may seem/feel that way. I understand you, I believe you, I share in your pain/discomfort and frustration that MCAS/histamine intolerance is and does to our health/wellbeing. I trust with self-advocacy and persistence in the medical community you too are discovering sources for wellness and feeling better every day. Thank you for being vulnerable enough to share your story and ask questions. ❤︎