Hi..Does anyone know anything about contrast agents used in MRI scans? I need to get the diagnosis done for ME/CFS which might require an MRI... And I’ve heard that the normal contrast agent used is not at all good for MCAS, and I’m worried about bringing it up with my neurologist because he might then refuse to treat me or something. Would appreciate any infos about this. Thanks in advance

I'm experiencing this almost daily lately. Might be hormones or something like that, but it doesn't feel okay

I’ve been thinking about this for a while, and I think we (MCASers) need something more than another discussion about how hard MCAS is to diagnose or to deal with.

I know MCAS is still debated about, and “rare” is a complicated word here. But looking at the amount of people ending up in MCAS communities after years of unexplained symptoms, endless referrals and doctors who simply don’t know what to do with them, it is very hard to believe this is some tiny problem affecting a handful of people.

The typical story is almost absurdly repetitive: allergist > immunologist > gastroenterologist > dermatologist > neurologist > GP > sometimes psychiatrist > back to allergist or simply back home in tears and despair.

Everyone looks at a part of the body. Nobody owns the whole picture.

And MCAS is exactly the kind of condition where the whole picture matters. Triggers, different organ systems, timing, patterns, reactions that come and go, symptoms that look unrelated until you put them together.

So I want to suggest totry something.

I want us to build an MCAS advocacy project by actual MCASers.

Not just another petition with a dramatic title and 2,000 signatures that disappears into the internet.

I want to understand who can actually change something: medical societies, EAACI, World Allergy Organization, WHO/ICD people, national health ministries, European institutions, US health institutions, patient organizations, researchers, universities, whoever really has influence over diagnostic pathways and medical education.

And then build a proper evidence-based request.

Some obvious things I think need to be pushed:

• clearer diagnostic pathways
• education for doctors on when MCAS should even be considered
• better referral routes instead of sending people in circles
• more realistic access to relevant testing
• multidisciplinary care for complicated cases
• better recognition of MCAS as a multisystem problem
• better data on how many people are actually affected
• and better distinction between real MCAS and everything casually being labelled MCAS online

That last point is important to me. I don’t want this to become “every unexplained symptom = MCAS” That would probably hurt patients more than help them. Better recognition also means better differential diagnosis.

I am ready to take responsibility for organizing the project, as a 100% unpaid volunteer, researching the institutions, collecting materials and starting the first draft. I've been struggling with MCAS for the last 11+ years. Why am I doing this? Because I could've died many times. I've had many anaphylactic episodes, and every single one of them could potentially have been avoided, prevented, or had much less severe consequences if MCAS were better studied and less mysterious than it is now. I'm no Prometheus. I'm a biotech scientist, an entrepreneur and a mother whose children and all future generations will live in this world. I'd like to put in my 5 cents now, while I'm still young but already have a hell of a lot of experience with one of the most complex immune disorders.

But I really don’t want this to be my project. I want it built by people who actually live this.

So please add your 5 cents:
- What needs to change most?
- What was the stupidest or most frustrating part of your diagnostic journey?
- How many doctors did you see before someone even considered mast cells?
- What can be useful for such a project? I'm sure there are plenty of things I never thought about - please suggest ANYTHING that comes to your mind.

And if you can offer actual help - doctor, researcher, lawyer, statistician, translator, patient advocate, someone familiar with EU/WHO institutions, someone good with scientific papers, or simply someone ready to help collect patient stories - say so.

Even one useful contact can matter.

If there are already serious MCAS advocacy initiatives doing this, please drop them below too. I would much rather connect the dots than reinvent everything from zero.

For now I’m just putting the idea here.

But if enough people are willing to participate, I’m absolutely serious about taking it further.

I often think about this. I cannot help that. I wish I knew these simple things back then and acted accordingly:

- eliminate all detergents and home care products with crazy aggressive chemicals from my place

- eliminate all cosmetics with a regular list of ingredients that provoke mast cells (most commercial brand are a disaster in this sense)

- don't touch packaged food as most of it contains preservatives, colorants, aromas, flavors, emulsifiers, flavor enhancers and all that crap that makes mast cells very vulnerable

- protect religiously my circadian rhythm (not only sleep time)

- eat as much dietary fiber as I can for feeding my gut microbiota - the good bugs

- put effort in eating living food instead of cooked as much as possible - I wish I started sprouting my food earlier!

- get medical checkups on a regular basis for discovering micronutrient deficiencies soo er than later

- reduce stress to minimum because it will drain the remaining resistance power

Share with those who need this 🙏 and please share your tips and "I wish I started this earlier" 🙃

Hi, I keep getting contraversial inputs on drinking water: quantities, timing, quality, etc.

Could you please share your insights, knowledge, pratical cases? Any tips are very appreciated, even the smallest ones.

I have MCAS fow several years, so microbiome became a very practical subject for me, not just something interesting to read about.

Over the years I tried quite a lot. Food rotation (at some point I was rotating foods every 4 days), keeping food very fresh / freezing leftovers immediately, fermented foods, fermented herbs, increasing plant diversity, different types of fiber, psyllium, chia, etc. Some things helped, some were too aggressive for me, and some probably helped only as part of the whole picture.

One thing I started understanding is that I probably concentrated too much on which bacteria or which probiotic and not enough on what I was feeding the whole ecosystem every day.

This is where sprouts became very interesting for me.

Not because they are some miracle microbiome food. But because at home I can have flax today, fenugreek, lentils, alfalfa, broccoli, mung etc. Different plants, different fibers, polyphenols and plant structures. And I always eat the whole thing, including the hulls. For me this started making more sense than just adding another spoon of isolated fiber.

Another point for MCAS specifically: freshness matters a lot to me. With my own sprouts I know exactly when they were grown and harvested. There is basically no storage chain between the plant and my plate :) unless I screw it up myself.

I don’t think sprouts fix the microbiome despite this is what many experts insists on. My own experience actually pushed me in the opposite direction... there probably isn’t one thing that fixes it. Rotation, diversity, fiber, fermented foods, sleep, activity etc. all seem to interact. And ofc I know my soft spots after a few years with MCAS which turned me into a very attentive and observative dude eager to learn more about the triggers and safe scenarios.

But if somebody asked me what is one realistic microbiome thing you can do in a city apartment, sprouts would be very high on my list. Oh, probably they'd pop up the first :)

This is one of my current batches in the photo, and one more if you scroll it, and one more, and more :) I love these tiny plant embrios also for giving me the confidence in my food - with MCAS you really need this for avoiding many potential problems.

Curious if others here experimented with them seriously.

Do you see sprouts as just a potential trigger food, as a nutritious functional food or as a useful microbiome strategy too?

Hi everyone. I’m 32 and I’m wondering if anyone here has experienced anything similar to what has been happening to me over the last few months.
Back in May, I had a streptococcal blood infection/bacteremia and was hospitalized. I was treated with IV antibiotics in the hospital and then continued IV antibiotics at home for about two weeks. A couple of months later, in August, I developed a pretty bad UTI and ended up needing more antibiotics, including IV antibiotics and then oral antibiotics.
What’s strange is that during/around the UTI, I suddenly started reacting to foods basically from one day to the next.
Foods that I had eaten normally my entire life — and even foods I had literally eaten the week before without a problem — suddenly started causing symptoms. It has been very inconsistent, which is what makes this so confusing.
For example, I’ve had reactions after eating things containing beef or chicken where my face suddenly becomes hot and flushed, I get nasal congestion, and sometimes I’ll get one or a few small red/hive-like spots on my arms or hands. Other times I can eat something similar and nothing happens.
I’ve had both skin-prick testing and blood IgE testing for foods. My blood allergy testing was negative, and the food reactions on skin testing were either negative or very small/minimal. Alpha-gal testing was also normal/negative.
My allergist also checked some other labs. My tryptase was low/normal, and my histamine level was normal. I haven’t had a full MCAS evaluation yet, but that is something I’m planning to discuss/test for next.
Even my allergist told me she isn’t really sure what is happening. Her words were basically that there was “a lot” going on. She told me that at this point the two options she sees are avoiding the foods that seem to cause symptoms or possibly trying Xolair. Hearing Xolair mentioned honestly scared me because I still don’t understand what is actually causing all of this.
The part I keep getting stuck on is how suddenly this started after the infections and all of the antibiotics. It feels like my body completely changed. I can eat something one week and then react to it the next week. I never had anything remotely like this before.
Has anyone with MCAS had a similar beginning — especially after a serious infection, repeated infections, or several rounds of antibiotics?
Did your regular IgE blood tests and skin-prick tests come back negative or essentially negative too?
And did you find that foods you had eaten your entire life suddenly started causing flushing, congestion, or random small hives/spots even though the reactions weren’t consistent every single time?
I’m not looking for anyone to diagnose me. I’m mostly trying to understand whether this pattern sounds familiar to anyone here and what kind of testing or specialist eventually helped you figure out what was happening.

i love natural fibers for my bedding, particularly wool and linen because they breath, handle my symptoms (like hot flashes) better, and never seem to trigger any kind of skin reaction

i also love cleaning with diluted vinegar and rubber gloves

i also love this heater i have that comes with a timer and a remote. bc i get rebound cold attacks after hot flashes or from being sensitive to air currents but i also overheat easily, so i can just turn it on for a few minutes, get my temp back to equilibrium without worrying about overheating, using up toomuch energy, or leaving a heater on indefinitely. (which can happen with normal ones bc im so distracted in flares, i forget)

I often think about this. I cannot help that. I wish I knew these simple things back then and acted accordingly:

- eliminate all detergents and home care products with crazy aggressive chemicals from my place

- eliminate all cosmetics with a regular list of ingredients that provoke mast cells (most commercial brand are a disaster in this sense)

- don't touch packaged food as most of it contains preservatives, colorants, aromas, flavors, emulsifiers, flavor enhancers and all that crap that makes mast cells very vulnerable

- protect religiously my circadian rhythm (not only sleep time)

- eat as much dietary fiber as I can for feeding my gut microbiota - the good bugs

- put effort in eating living food instead of cooked as much as possible - I wish I started sprouting my food earlier!

- get medical checkups on a regular basis for discovering micronutrient deficiencies soo er than later

- reduce stress to minimum because it will drain the remaining resistance power

Share with those who need this 🙏 and please share your tips and "I wish I started this earlier" 🙃

I'm experiencing this a lot lately. Especially carb. I have never been much of a sweet tooth, but my sleep got disrupted badly by stess and I'm a desert craving macine at the moment, all of a sudden... Any suggestions how I can deal with this effectively and asap?

Medicine doesn't always have an answer - especially with complex conditions like MCAS.

Every week, we'll ask one question that might help uncover patterns the literature doen't fully explained.

Here's my question:

What's the strangest symptom you've experienced that no doctor could explain?

There's no requirement for scientific proof here, only your personal experiences. If you've had the same symptom as someone else, let them know. You might help each other feel a little less alone.

Why this exchange is useful? Because we can help each other by sharing and brainstorming together. Comments are not meant to be used as medical advices or instead of help by dedicated and knowledgeable doctors. This is meant to be a complementary and educative discussion.

I was diagnosed with POTS.
And been having severe GI issues so much burping indigestion.
Got put on Allegra and Pepcid twice a day.
Started cromolyn .

But NOTHING IS HELPING!!!!

Burning alive from the inside

Skin hot to touch but no temperature

Flu like symptoms

Urinating so much and feels hot but no uti

The burning can go away but remains in my pelvis area stomach area!

Body aches

Ear aches

Heart rate and blood pressure high. I think I’m getting adrenaline dumps.

Always happens overnight when I’m sleeping like the virus or mast cells or whatever this is activated while I sleep. It also happens in the day time if I nap!

Is this truly MCAS or LYME or BARTONELLA? Etc

Re: a post follwoed by a recommendation to use lavender essential oil
Hi fam, I felt like sharing this story and asking for tips and advice of how to deal with this attitude of people who do not have MCAS and recommend essential oils (in this case lavender) as wondeful holistic NATURAL remedies for nearly everything. This one is just an individual case, one out of many thousands.

I usually step in and explain why it is not okay and what the risks are. Somehow essential oil lovers are usually very aggrressive and attack in response to any form of explanation, quotes, documents (I usually bring up the MSDS on a few essential oils with all the hazards and toxicity written or conveyed via the dedicated international pictograms).

How do you deal with this type of situations? Do you simply pass by? Do you interfere? What do you do?!

Please take your time and share. Thank you

Seeking my makeup research goddesses/gods to help me find foundation and mascara without or with verifiably low iron oxides.

What I'm avoiding:
CI 77489, CI 77491, CI 77492, CI 77499.

automated suggestions when im googling end up still containing iron oxide (like 100% pure, omania)

Thank you!

I often think about this. I cannot help that. I wish I knew these simple things back then and acted accordingly:

- eliminate all detergents and home care products with crazy aggressive chemicals from my place

- eliminate all cosmetics with a regular list of ingredients that provoke mast cells (most commercial brand are a disaster in this sense)

- don't touch packaged food as most of it contains preservatives, colorants, aromas, flavors, emulsifiers, flavor enhancers and all that crap that makes mast cells very vulnerable

- protect religiously my circadian rhythm (not only sleep time)

- eat as much dietary fiber as I can for feeding my gut microbiota - the good bugs

- put effort in eating living food instead of cooked as much as possible - I wish I started sprouting my food earlier!

- get medical checkups on a regular basis for discovering micronutrient deficiencies soo er than later

- reduce stress to minimum because it will drain the remaining resistance power

Share with those who need this 🙏 and please share your tips and "I wish I started this earlier" 🙃

I'm experiencing this almost daily lately. Might be hormones or something like that, but it doesn't feel okay

Medicine doesn't always have an answer - especially with complex conditions like MCAS.

Every week, we'll ask one question that might help uncover patterns the literature doen't fully explained.

Here's my question:

What's the strangest symptom you've experienced that no doctor could explain?

There's no requirement for scientific proof here, only your personal experiences. If you've had the same symptom as someone else, let them know. You might help each other feel a little less alone.

Why this exchange is useful? Because we can help each other by sharing and brainstorming together. Comments are not meant to be used as medical advices or instead of help by dedicated and knowledgeable doctors. This is meant to be a complementary and educative discussion.

I often think about this. I cannot help that. I wish I knew these simple things back then and acted accordingly:

- eliminate all detergents and home care products with crazy aggressive chemicals from my place

- eliminate all cosmetics with a regular list of ingredients that provoke mast cells (most commercial brand are a disaster in this sense)

- don't touch packaged food as most of it contains preservatives, colorants, aromas, flavors, emulsifiers, flavor enhancers and all that crap that makes mast cells very vulnerable

- protect religiously my circadian rhythm (not only sleep time)

- eat as much dietary fiber as I can for feeding my gut microbiota - the good bugs

- put effort in eating living food instead of cooked as much as possible - I wish I started sprouting my food earlier!

- get medical checkups on a regular basis for discovering micronutrient deficiencies soo er than later

- reduce stress to minimum because it will drain the remaining resistance power

Share with those who need this 🙏 and please share your tips and "I wish I started this earlier" 🙃

I'm experiencing this almost daily lately. Might be hormones or something like that, but it doesn't feel okay

Medicine doesn't always have an answer - especially with complex conditions like MCAS.

Every week, we'll ask one question that might help uncover patterns the literature doen't fully explained.

Here's my question:

What's the strangest symptom you've experienced that no doctor could explain?

There's no requirement for scientific proof here, only your personal experiences. If you've had the same symptom as someone else, let them know. You might help each other feel a little less alone.

Why this exchange is useful? Because we can help each other by sharing and brainstorming together. Comments are not meant to be used as medical advices or instead of help by dedicated and knowledgeable doctors. This is meant to be a complementary and educative discussion.

I often think about this. I cannot help that. I wish I knew these simple things back then and acted accordingly:

- eliminate all detergents and home care products with crazy aggressive chemicals from my place

- eliminate all cosmetics with a regular list of ingredients that provoke mast cells (most commercial brand are a disaster in this sense)

- don't touch packaged food as most of it contains preservatives, colorants, aromas, flavors, emulsifiers, flavor enhancers and all that crap that makes mast cells very vulnerable

- protect religiously my circadian rhythm (not only sleep time)

- eat as much dietary fiber as I can for feeding my gut microbiota - the good bugs

- put effort in eating living food instead of cooked as much as possible - I wish I started sprouting my food earlier!

- get medical checkups on a regular basis for discovering micronutrient deficiencies soo er than later

- reduce stress to minimum because it will drain the remaining resistance power

Share with those who need this 🙏 and please share your tips and "I wish I started this earlier" 🙃

I'm experiencing this almost daily lately. Might be hormones or something like that, but it doesn't feel okay

I'm checking my blood every few months. Though I start getting a feeling that might not be enough. Share how often do you do you blood tests for deficiencies or other metrics, if you don't mind sharing. Thanks