I’M SO HUNGRY!!!! I AM ALWAYS SO HUNGRY NOW OH MY GOD. I CAN’T LEAVE DORITOS ALONE. I CAN’T LEAVE TACO BELL ALONE. WHY AM I SO HUNGRY. FOOOOOOOOOOD GAHHHHHHHH

Just wondering if anyone else out there is like me - my illness started whilst living in an old tenement flat in Glasgow, unbeknownst to us there was a water ingress issue in the flat above us, causing dry rot and mould to spread around the wooden beams between their flat and ours. This went on for around 10 years, whilst I just got more and more ill. I knew I was being poisoned by something but didn't realise it was both mycotoxins and my own body.

My symptoms are mostly triggered by foods or topical lotions, anything high in salicylates, also very recently any kind of exertion now triggers me. It causes my entire body to feel like it's burning, I suffer a lot of internal tremors and gastrointestinal issues, hellish neurological symptoms - confusion, memory loss, overwhelming feelings of doom, depression, anxiety. I Just feel like i've been poisoned with something that is killing my body.

Finally, after 13 years, I've found an MCAS clinic here in Glasgow that's prescribed me Ketotifen, LDN and Cholestyramine to try and bind to the mould in my gut. It all seems to be going well so far, however I am struggling to keep my bowels moving, which is vital for the Cholestyramine.

I eat only 3 foods - chicken, rice and carrots, all cooked in butter, salt and water. It's actually quite delicious so at least I enjoy it. Also taking Movicol to try and get my bowels to move better.

Just wondering if anyone else has experienced a similar story and has any information to share.

Many thanks.

I’ve been in a low histamine diet for 4 months and on Singulair. I don’t see a specialist until October. But I can smell again! I don’t know what exactly I’m smelling so it’s weird. I know I cannot stand the smell of Gain detergent. It smells “musky” like I would imagine a rose would smell. Coffee is weird. And applesauce is so yummy smelling. Toothpaste is fresh. I can’t wait to smell my newborn grandson. He will be here this weekend. Oh and my dog stinks something awful. Really bad. I never could taste and I still can’t so maybe that will come back too. We went to dinner and I kept telling my husband the people stunk. He said “No you’re smelling coffee “. It was so weird. I compared it to someone getting cochlear implants turned on. They can hear but not sure what they’re hearing. What should I smell?

And im really sick!!!! Im really fucking sick!!! I literally have no idea what to do, I've lost all progress in 2 years and now she's talking about adding them back like why if there were too many then adding any back is unacceptable? And I just litetally fo not know why she did this and im so fucikg sick!!

Im sorry im just in such a bad place and I dont understand why she undid 2 years of process in 2 months. Now I have sibo again and my GI wants me om a water diet. A fucking water diet. Like I can not do this. I was doing so much better and now im back to being suicidal and crying foe 8 hours a day and ifk I just need help

I was trying to finish up w the cardiologist before setting up a dental appointment but now my 🦷 is flipping me the bird.

“how does a bad tooth affect MCAS?”

I googled it.
Course I did.
Why do I keep doing that? 🙄 (not good)

Idk what more to say, besides I could sure use a hug…

Any advice on dental work w MCAS?
Im not speaking to google anymore today… 😝

TIA!

I’m pretty sure I have mcas…

I know I posted before but I’m so exhausted… this started a month ago from a suspected allergy to sesame to 3 er visits for anaphylaxis ( although the one today they labeled as allergic reaction despite it being a second reaction that day with throat swelling, elevated heart, feeling like I’m going to pass out, ears hot, body itchy, and goosebumps) the one this morning at work my ears started burning, throat started swelling and my heart rate jumped to 150 with a adrenaline dump that helped throat swelling which was new…

all my ige blood work, skin prick tests all keep coming back normal… but yet I keep reacting to more things … heat, makeup, walking around a store amongst a growing lists of foods… I feel like I’m losing my mind…

i was already limiting EVERYTHING the last two weeks while my body was recovering… I barely eat food and keep it minimal and have lost 7 lbs, I stopped all vitamins, perfumes, topicals, ect) in fact the last 2 days I finally got to the point I could eat without my throat swelling afterwards and sinuses feeling inflamed I was starting to feel more optimistic and hopeful… then getting another reaction today I feel absolutely defeated and like I’m back to square one… I was struggling to give myself an EpiPen and my partner had to walk me through it because cognitively I was struggling so bad on top of panicking because I could hardly breathe..

i already have anxiety around food from the last two anaphylaxis and after today makes it even worse… I just feel so defeated idk what to do anymore it just feels like my body is trying to kill me… the worse part is food has always been my coping method, even 1 peice of chocolate is enough to boost my mood ( But that causes a reaction now) , I love to cook things from scratch and now I’m terrified to even eat plain chicken..

i am very much addicted to nicotine and even those cause reactions now …

calling my allergist tomorrow and telling him his plan isn’t working… I just want to crawl in a hole and cry… I feel so defeated…

I 39 (f) I just wanted to see if anyone can relate to a few strange symptoms I’ve been experiencing monthly, and whether they might be worth mentioning to my doctor.

Lately, I’ve noticed that I’ll have at least one bout of diarrhea around ovulation, and then a couple of days before my period I start experiencing what feels like allergy/cold symptoms. This month, I’ve developed laryngitis. The previous two months, I had a low-grade fever, chills, and stuffiness instead.

It seems to be happening around the same time in my cycle each month, so I’m wondering if anyone else experiences something similar or has found a connection between these symptoms and their menstrual cycle.

it was my birthday yesterday. so I went all out.

eggs with cheese in the morning. sandwiches with cheese later in the afternoon. a large icecream cone. and then, the giant vanilla icecream cake.

No regrets for the most part...... HOWEVER

i suddenly was ITCHY around 9pm. like, my leg was so, SO fucking itchy. i was like what the fuck???? do i have a mosquito bite ???

fast forward like 3 hours, i have three? four? of those bumps and they now look less like a bite and a lot more like a hive. and they really fucking itch.

this whole day ive been REALLY making sure to take medicine, and extra of it. and i still ended up with hives. ive never had hives before so its kind of scary for me !!! plus my face and hands are .. "tingling" ? its very weird and scary.

im gonna be taking like. a pretty intense dairy break for a while... and perhaps a low histimine diet overall for a weekish to see if it helps. because i definitely overfilled my histimine bucket 😭

So I can eat fish and meat even if it is not recently cooked but I can't eat safe raw fruits and vegetables without flares. It's not really common for MCAS? Or it depends?

Hey yall, I go to mayo in 2 weeks and it’s still not close enough. I’ve lost a little over 10% of my body weight due to my guts being on fire. I honestly cannot wait for mayo but I need some words of encouragement so I don’t die of exhaustion over the next 2 weeks. Drop craft ideas if you have any 🫶

“In 2021 I got mono, then COVID three months later. That one-two punch wrecked my immune system and I’ve never fully recovered.
I’m a 21-year-old male. I’ve done countless studies — bloodwork, sleep studies, brain scans — and all of them come back healthy. But i have newfood sensitivities, smell sensitivities, pollen reactions, and a constant brain fog and fatigue that never fully lifts. It’s the worst part of my life right now.
I’ve tried low-histamine diet, mold avoidance, rifaximin for possible SIBO, quercetin, and Zyrtec. Nothing has touched the fog yet.
What actually helped your brain fog and fatigue after a similar post-viral onset? What did you try that finally moved the needle?
Serious advice only — no generic ‘try this supplement’ answers. I’m looking for what actually moved the needle for people with this exact post-viral pattern.”

I’m in Italy until Tuesday. I’ve been getting sick after every meal. Doesn’t matter what. I’ve varied my courses and my food, tried to pick historically “safe” things for me. Doesn’t matter. All ingredients are fresh and pasta is often made on site.

What the FUCK.

I’m so frustrated and just want to enjoy my trip. Heat is a huge trigger for me and I think that’s part of it. I have an allergist appt when I get home. Any suggestions on ANYTHING that will help? Bc I’m about to fast until we go home.

I cleaned my entire house (with lots of cleaners) and didn't have a single issue other than general irritation caused by too much exposure. (Ya know, you spray it and cough cause you got too close)

But holy crap...this stuff is... a life saver

My symptoms from taking it are some itchy pimples ,sweating way more than usual , brain fog and I can feel that my histamine level is very high .

Which ingredient is the bad guy here probably ?

Ingredients : Ubiquinol Q10,Pqq,Vitamin E as oxidant safety ,Mct oil ,glycerin,carrageen,modified corn starch

Hi all, I am 99% sure I have MCAS and hEDS.

After going into anaphylaxis out of nowhere just after last Christmas over Chocolate, I am finally going to have an allergy appointment end of this month.

Since this incident, I have figured out more triggers that all cause the same issue - instant tongue swelling, sometimes throat swelling, drop in blood pressure. This of course means I have to carry an epipen on me at all times. It absolutely sucks and I am really fighting hard to not be anxious about food.

Through doing research, I've found out that a KETO diet/intermittent fasting might be helpful to help with gut health and keeping flare ups low. I also started working out again but have a feeling this isn't helping my situation much.

In summer, when I am outside most of the time I find I am almost symptom free.

A few days ago now I have realised that I now lost dairy, too.

I am just really at a loss at what to do to keep the flare ups low, not react to safe foods and to not fall into depression.

Any help/advice is highly appreciated!

Hey guys and gals,

Just wondered how many people out there go to the hospital every time they use 1-2 epipens.

I keep getting advised to go every time but honestly I have anaphylaxis every few days/weeks which means I'd always be at the hospital only to sit there for hours twiddling my thumbs.

Thoughts?

Hi everyone,

I just started taking ketotifen for my MCAS. 0.25mg x2 daily.

I've been experiencing the histamine dumping with it and having mini flares as a result.

When I googled this it said it should stop at two weeks but I'm still having them.

I got it compounded specifically to not have any triggers in it, and I'm not allergic to Ketotifen itself.

Has anyone else experienced this, and how long did it last for you?

I just took my first dose. And only thing I feel so far is burning in the back of my throat?

Anything else I should be aware of so I don’t panic? Lol

I have suspected MCAS for about two years, but am overwhelmed by the prospect of re-understanding my symptoms in this context (especially because I have recently gone through this process of realisation following adult AuDHD diagnoses) and daunted by the idea of seeking treatment. I have been dismissed when trying to get help for my symptoms over a period of years and I had started thinking some must be psychosomatic before learning about MCAS. I am writing this at 3:30am as I’m on holiday and having a flare and feeling pretty bad. This is the longest holiday I’ve ever had (12 days) and I needed so badly to be able to rest and recover as I’m currently signed off from work for two months with an ME flare. I’ll share a bit about why I suspect MCAS (and possibly hEDS) and my other dxs below in case this sounds familiar to anyone, I’d welcome thoughts about whether my symptoms together are grounds for suspecting MCAS. Kind words or advice would be very welcome, I live in the UK in case that’s relevant.

I am 33 and was diagnosed with ME about 8 years ago and fibromyalgia 6 years ago. For my entire life I get sore throats and cold symptoms regularly, in an episodic way which seems linked to stress, temperature changes and hormonal cycles as well as triggers I struggle to identify. I have irregularly shaped tonsils and frequently deal with stones and tonsillitis. I have had tonsillitis once a year since I was about 11 and have been hospitalised on intravenous antibiotics for one episode (this then led to an allergic reaction to the point of anaphylaxis and I haven’t been able to have penicillin based medicine since). My diagnoses as of now are:

ME
Fibromyalgia
Autism
ADHD
cPTSD
PMOS
penicillin allergy
Asthma (childhood only)
Eczema (acute in childhood, managed in adulthood for the most part)

I treat my fibro with 10-20mg amitriptyline nightly and it has reduced my pain by 75%.
I take 40mg Lisdexamfetamine daily for ADHD
I take OTC cetrizine for suspected MCAS flares and have found this helpful in reducing the duration of flares, which I otherwise treat with bed rest, salt gargle and cetrizine.

My symptoms are:
recurrent tonsillitis
Recurrent episodic sore throat, mucus production and flu like symptoms which show up in the days preceding and just after my period, or when stressed or in an unfamiliar environment, or after having been too hot or too cold
Fatigue (attributed to ME)
Intermittent cognitive issues (attributed to ME “brain fog”)
Persistent pain in lower body (attributed to fibro)
Burning sensation on skin when flared up
Intolerance of many chemicals, particularly in perfumes and cleaning products - smelling these causes headache, nausea, light headedness
Hyper-mobile joints, particularly noticeable in thumbs
Recurrent right arm pain
Sensitive skin which looks younger than it is - there are few products I can tolerate as most cause a reaction. For most of my adult life I haven’t been able to shave my body due to the reaction on my skin and discomfort. I can only wear a handful of textiles or my skin is too irritated - to the point where I have to buy underwear with the waistband enclosed.
Skin bruises easily
Skin flushes easily and I often look pink (I have pale skin and dark hair)
Occasional hives
Ectopic heartbeats and palpitations which are worse during flares and stress. Investigated by cardiologist in childhood and recently and both times nothing was found.
Racing heart and ectopics when going from standing to sitting suddenly (not the other way around). Cardiologist has told me this can’t be POTs related or any form of orthostatic intolerance.
Extremely heightened sensory sensitivity, particularly in relation to light, sound, touch and smell (attributed to autism)
Caffeine intolerance- causes palpitations, overheating and headaches
Low alcohol tolerance in the sense that I feel unwell with headache within an hour or two of having one or two beers
Hot flushes
Very low tolerance for heat
Propensity for hiccups
Propensity for pins and needles
Intermittent sleep dysfunction (attributed to ME)
Irregular, painful periods (attributed to PMOS)
Rapid weight gain around 40kg between ages 21 and 25.

In terms of food, I have always believed I had no food allergies or intolerances however as an adult I have come to realise that certain ingredients
(onions, seitan, cane sugar, cows milk, white flour) make me feel more unwell the day after I eat them if I have a large quantity of them.

I feel like the diagnosis is completely ignoring MCAS. I would not have this diagnosis if it weren’t for MCAS. I have no sensory issues or anything traditionally associated with ARFID, just the severe reactions that food gives me.

Have any of you been to eating disorder treatment programs? I have many health issues going on and several doctors are refusing to help me until I go to treatment for ARFID, yet I feel like eating disorder centers cannot treat me properly because I will have uncontrolled and unbearable reactions to the foods they want me to eat. I’m stuck feeling very ill in all aspects because of this and I don’t know what to do

I got diagnosed a few months ago. Dr put me on the twice a day Pepcid and Zyrtec protocol. One of the things that has not gone away is the constant runny nose, especially when I eat. Every time I eat something my nose starts running. Anyone else have this too? Anything you’ve done that was successful in alleviating it?

Hello, this may be a very long thing but please hang in there with me, I'm really really struggling. I will first go over my medical info, then my symptoms leading me to believe I have MCAS, then I will go over the issue. Once again please give me any advice at all if you can.

Medical background: I am 20 years old, female, diagnosed professionally with hEDS, many doctors have said I meet full POTS criteria however currently awaiting my autonomic testing redo.

Symptoms related possibly to MCAS: localized rashes when stressed (typically on hands and forearms), flushing in heat or blotchiness after showering, 80% of the time I eat I get reactions like stomach pain, nausea, dizziness, and an intense panicky feeling. I have not attributed these reactions to a specific food.

About a week ago I was at the dentist, had those localized stress hives I've gotten a few times in my life, then decided to bring it up to my doctor. We talked about possibility of MCAS and she said it is definitely possible especially because of the co-morbid connection to hEDS and POTS. I went home terrified as I've heard many many horror stories about anaphylaxis and mcas. I decided to go on a low histamine diet (plain chicken with salt and fresh garlic, broccoli, cauliflower, blueberries, apples, chia, a few others) then my birthday came around on august 30th and I was distraught I couldn't have sushi, a pumpkin chai, etc to celebrate.

Yesterday I had a consult over the phone with the immunologist. Long story short he claimed there is no relation between pots hEDS and mcas and that is a "social media myth". I went over my symptoms and history, how ive never had anaphylactic shock and never had lip swelling or reacrions to the various amounts of makeup and hair and nail chemicals I use. He came to the conclusion that he doesn't think I have mcas, I informed him about my diet and at first he told me to just slowly introduce food back in, then eventually just said I can eat whatever and don't restrict. I also asked about taking zertec daily just in case and he said it's unnecessary. He said he'll still do testing (I probably won't get results all together for a few weeks). I also asked hypothetically if I have mcas should I worry about anaphylactic shock even if I never have had it, he said it's very unpredictable.

Here are my problems/questions

1: is anaphylaxis really that common and should I be worried?

2: any comforting words of wisdom?

3: should I or should I not eat the foods I want to eat

I just keep seeing so many mixed things, terrifying stories, and the fear is getting absolutely paralyzing. Please help me out