For all fellow MCAS ( also Histamine intolerance) sufferers, of if you suspect you might be one:
mastcellactivation.byhealth...
There are some really excellent practitioners speaking: Lawrence Afrin, Trudy Scott, Beth O‘Hara, to name but a few.
I am a fellow MCAS sufferer and I don’t have anything to do with the conference, just thought it might be of interest😀
Thanks for this- since my diagnosis by Dr Tina Peers in April it’s been like wading through treacle (actually something infinitely more unpleasant 😬). Hopefully these talks will help. 🤞🤞🤞
Hi. You’re welcome😀 I’ve actually purchased the package to be able to download and save the talks, as I find with the time difference and other stuff going on, it means I can watch and rewatch at my leisure.
Hope the talks bring you further and help on your health journey. Have you been diagnosed with MCAS or another MCAD?
All the best🦋
Dr Tina Peers diagnosed me with MCAS and HIT in April but my thyroid medication has been all over the place over the last 18 months (blood results yo-yoing) I think due to 2 brushes with COVID and 3 COVID jabs so I don't know whether things will calm down once my thyroid has calmed down and is correctly medicated. Meantime following a low histamine diet and taking 20ugs loratadine daily. Don't think being newly menopausal is helping much either!🙄 Upside is I've lost a stone and a half in weight but now it's just getting silly and I need to gain some!
Good morning. I am very glad for you that you have the diagnoses of the MCAS and HIT. I think it really helps to at least know what one has, to be able to deal with the illness more easily and inform oneself. Thank goodness for the internet nowadays and that MCAS is a recognized illness, albeit very recently! I’m in the same position as you. I was really undermedicated for far too long due to high dose oral progesterone intake which caused hyper symptoms. According to my gyno there is no correlation between thyroid hormone and progesterone!! Where do these docs ‚train‘!?
I had Hashis diagnosed in 2011, on Levo for 2 yrs, health crashed and finally went on Armour and started recovering slowly. All in all took about 3 yrs from initial diagnosis to start to feel better. Health started going downhill again in 2017 and I‘ve been really ill again since Oct 2020, lost my job last year and has taken me nearly 2 years to raise the Armour meds. Diagnosed with HIT last year and MCAS this year, as well as CFS and Fibro. Was getting period every 8 - 14 days!! Am now on bioidentical creams - progesterone, estradiol, estriol, DHEA and hydrocortisone and have managed to stabilize cycle to 28 days again - what a relief. First time in years. But period still knocks me flat for 5 -7 days each month!
Am on really strict diet, low histamine as well but list of things I can eat is shorter than what I can’t eat. Am GF, DF, no soy or eggs, yeast, sugar, pulses, seeds, most oils, nightshades, alliums, corn… chicken and fish only from specialist places that slaughter, clean and freeze straightaway. Have to freeze any leftovers to stop histamine. Am on Nalcrom as still reacting to many things. Upside is that, like you, I’ve lost loads of weight - 15 kgs - had to work that one out in stone ( 2.3), haven’t been this thin since before I had my daughter 20 yrs ago!
Haven’t been vaccinated for COVID as doc advised me not to due to Hashis and MCAS and fire health situation. Know will catch it at some point - decided to risk the illness rather than the vaccine. Not happy with either way but so far virus free, whereas no idea how I would have reacted to vaccine.
So is there a proven interaction between the progesterone-only pill and levythyroxine? I was put on Cerelle in 2012 and diagnosed with an under-active thyroid in 2015 and developed insomnia within a couple of years of that which I had attributed to being peri-menopausal. I definitely think that long-term hormonal contraceptive use cannot do our gut biome (where we now understand 70% of our immunity is based) any good and I do wonder if it manifests itself in thyroid damage - although I don't think anyone is much looking into it as they want us to keep taking it! Certainly I think taking contraceptives for over 30 years was not what was originally envisaged when the pill was invented all those years ago.
It's really interesting to read about your diet. I am really struggling to stop my symptoms at the moment. I am taking 20ugs loratadine a day as I am reluctant to take famotidine as I also take mirtazapine for sleep and you are not meant to take the two at the same time. I also take a mast cell stabiliser. I've tried various combinations of HRT twice in the last 18 months and have abandoned it as I don't think that my body could clear the estrogel element and so was contributing to the HIT symptoms (I'm 52 and my last period was June 2021). I have an appointment with another hormone specialist in October (first available appointment!) so am hoping for some answers then. I am taking levo again - I tried Erfa last year for 6 months but my MCAS symptoms developed after I started taking it and so I wondered whether the fact that it was pork-derived and not fresh might be contributing to the histamine problem too but who knows?!
I am gluten, dairy and refined sugar free. I have been eating quail's eggs and potatoes (but no pulses, legumes, other nightshades or fish unless I'm by the sea and it's freshly caught ie about once or twice a year!). Maybe I should cut them out and see if things improve. Otherwise I'm subsisting on rice, quinoa, chicken, broccoli, cauliflower, carrots, courgettes, apples, blueberries, redcurrants and blackberries, cabbage, lettuce, beetroot (although I do wonder if this is a trigger for me) . What do you find you can eat? The waitress I spoke to said she eats mango which I have not tried.
My cousin (another poor converter of T4 to T3 and so an NDT user) is convinced that her thyroid was damaged by Wifi. Certainly my MCAS diagnosis coincided with all five members of my family WFH on WIFI, WIFI boosters and assorted hotspots from devices but I think that this was probably COVID initiated and then worsened by the jabs. Mind you, it was also a very stressful time. The bizarre thing is that both times I have had COVID I felt a bit pants but seemingly recovered from the infection itself well (within 7-10 days).
I didn't know that MCAS sufferers were called the canaries in the coal mine. Only yesterday I was saying to my husband that I guess I am not very highly evolved and I'm a dinosaur whose genes are going to the wall. I just pray that medicine can get to the bottom of the causes soon - before my three children are adversely affected. I am already discouraging my teenage girls from hormonal contraception in favour of barrier methods.
I've also been diagnosed with frontal fibrosing alopecia and I think that's due to mast cell activity in my hair follicles - it's had a pretty devastating effect on my confidence. However a good friend just rang me to advise that she's battling breast cancer so that puts things in perspective for me. We've agreed that we'll go wig shopping together.
Also just been into my local Cote restaurant to try to arrange a low histamine meal on Thursday (my daughter's belated 18th birthday meal) and thought that I would have an uphill struggle explaining my dietary requirements only to discover that one of the waitresses has been diagnosed with it too following her brush with Covid in December. She said people requesting low histamine meals is becoming more common.....
I really hope you’ll be able to celebrate your daughter’s 18, enjoy the meal and have no reactions🍀Eating out and traveling is sadly a thing of the past at the moment for me. But am hopeful will get better at some point. It’s quite scary how many people are increasingly being diagnosed with thyroid disease, HIT, food intolerances, other autoimmune diseases….
Our food, our water, the air we breathe, stress of modern living, basically everything that surrounds us…are slowly poisoning our health. They don’t call MCAS patients the ‚canaries in the mine‘ for nothing.
Hi Swissgirl from a "Germanboy" 
- thanks so much for this!
I've shared it on another forum I'm on, they'll be delighted... 
Interested you put Trudy Scott up front: I'm a fan of cos GABA is my mainstay - what's your reason?
In case anyone wants an overview of all the names:
29th: Jill Carnahan, Lawrence Afrin, Leonard Weinstock, Neil Nathan, Trudy Scott, Lloyd Burrell, Aimie Apigian
30th: Mary Beth Ackerley, Amber Walker, Becky Campbell, Terry Wahls, Scott Forsgren, Bridgit Danner, Darin Ingels
31st: Theo Theoharides, Rodger Murphree, Suzanne Gazda, Beth O'Hara, Andrew J. Maxwell, Margaret Christensen,
1st: Tom O'Bryan, Kellie Barnes, Tania Dempsey, Ashok Gupta, Alena Guggenheim, Evan H. Hirsch, Ann Shippy,
2nd: Werner Vosloo, Erin Thomas Panian, Carolyn Ledowsky, Nafysa Parpia, Annie Hopper, Joe Mather.
The package with the talks is 69$, for 99$ you get a "course".
Could MCAS a possibility?
Systemic Mastocytosis and Ehlers Danlos Syndrome hypermobility. Does anyone else have this combination of diagnoses 
MRI with contrast dye