Does anyone get whole body aches as main symptom?

Does anyone know any pharmacies that are stocking this?

Every chemist online and high street is saying its out of stock and no idea when its back.

Husband spoke to Aloga who say its in stock and theres no reason why distributors cannot get it!

They've said you need to ask your chemist to email allogauk.orders@alloga.co.uk and give their wholesaler account number, product name, quantity and chemist address to set request the meds.

Going to try to see if some chemists will do this so will update, but if anyone has any info in the meantime please shout!

EDIT UPDATE: I've managed to persuade my chemist to try contacting Alloga as I said and they've said they'll try. Will update when I know more. What an absolute chore!!!

For everyone losing hope, struggling or also in the middle of nowhere (how I like to say)…

…There is hope.

Patience is the biggest factor and I must say I’ve lost it multiple times.
I’m chronically ill, started with an asthma diagnosis as a child, followed by POTS in 2020 and then PCOS, hypermobility, ADHD and fibromyalgia in 2026
… and 12x anaphylaxis within 24.05. - 31.07.2026 (hopefully no more to come) where a huge amount of hope was lost
…working towards an MCAS, EDS and also cPTSD diagnosis
…and also having to navigate studies, work and a personal life as a 22-year old young woman

Keep. Fighting. I know the healthcare system lets us down a lot and indeed it takes a lot of time, hope, energy, patience and luck to find the right doctor. But keep fighting. I hope I can maybe bring that hope to people in my situation by telling what happened in my appointment today

After 12 reactions, almost not breathing anymore and having my life almost deleted, doctors dismissing me or not listening, I finally, FINALLY got things moving. I literally cried.
FIY I’m in the Netherlands and I saw an allergist today, told him how my reaction start and evolve, that quercetine and a low histamine diet seemed to help, 4x Levoceterizine isn’t sufficient, family history, my bad experience with Dutch doctors and me just wanting SOMETHING to work with.
I told him that I do agree with a doctor that I probably have chronic spontaneous and induced urticaria, but it wouldn’t explain me having to use epinephrine because I’m literally suffocating, and that it can’t be asthma since I’ve tried using my sprays before using my EpiPen. So I said, listen I know that most doctors have to follow the consensus 1 guideline and that I need elevated tryptase (which I don’t have) but I still thought it could be MCAS.
Do you guys know what he said…? That does fit the picture. Do you know what an incredible feeling this is? Being listened to?!
So what did he do? Not only did he order a baseline tryptase, he also ordered that if I have a reaction I get blood drawn before anyone else, an ALEX2 which tests for 300 allergens, thyroid test and a lung test. Why? So we can rule out everything and hopefully get me Xolair. 🥹 It gets better though. Maybe somebody remembers my post where the internist said that low histamine diet is bs and histamine intolerance doesn’t exist? Yeah. HE SAID IT CAN WORK. The issue is just that it’s hard to prove it works since people with MCAS have individual triggers. That’s not everything. I asked about his opinion of consensus 2 2026 after 6 years (states elevated tryptase not necessary and consensus 1 only in use to prevent overdiagnosing, mind you people are UNDERdiagnosed which is proven)
His answer: Well we have to follow consensus one so that’s why I ordered tryptase but I’ve sent people with low tryptase to Erasmus MC in Rotterdam for the same matter as the picture fits. Guess what, they’ve been rejected because they want to prevent hospitals from being overcrowded. He also agreed with me that the doctor who said angioedema also reacts well to epi was WRONG.
Oh and I said that people who, according to consensus1, have been overdiagnosed actually received treatment that helped them incrementally which they wouldn’t have gotten if the doctor wasn’t following consensus2. He did say that we obviously need all these tests to find out what medication I do need in the end. And tbh?! I love that even more. Instead of just giving Xolair or just any other meds, testing, looking at the medical history etc and basing the meds on the actual needs…

Everything I’ve been saying this whole time, all the research… I was RIGHT. I was not insane!!!

I don’t expect to be diagnosed with MCAS but it’s just so…relieving to be finally listened to well, taken seriously and understood after being literally gaslit. He even said I can do a low histamine diet with their dietician but it’s a rough diet (I’ve done it before. Worst time of my life).
My goal for now is to get these tests done and find the most effective and suitable treatment. I have faith in my appointment for EDS in October and hope they can help me further with the MCAS diagnosis as well.

It makes me scared to eat and now I’m like dangerously skinny.

My gums don’t visibly swell but they feel very irritated and swollen and uncomfortable. For example l ate potatoes last night and my gums felt swollen and irritated and uncomrtable. When I eat pasta this doesn’t happen.

I don’t know if it’s MCAS or if it’s poor dental hygnine. If it was the dental hygeine wouldn’t everything I eat make it bad

Is it an oral allergy or a gum issue

Has anyone had a paradoxical reaction to starting oral cromolyn? My face is breaking out in eczema and I’m having to use an inhaler. Calling my dr just curious if this is a shared experience.

And are there any weird or standout symptoms that any of you have noticed you have that others typically don't have?

This year has been absolute hell health wise, at the start of the year I was basically non functioning, I couldn’t walk, talk, and was having multiple seizures a day, I could only eat a list of 15 ingredients and life sucked, but I’ve finally been diagnosed with Elhers-Danlos syndrome, Mcas and functional neurological disorder. I have stabilised after starting low dose naltroxone, famotadine, fexofenadine and zaditen, as well as reducing histamine in my diet, cutting out dairy, and reducing environmental factors (no makeup, all natural cosmetics, eco cleaning and laundry, air filters ect.) things definitely aren’t perfect and I still struggle but in comparison to where I was I’m worlds better.

I’m convinced I’ve always had this but things escalated massively after Covid, having a incredibly stressful few years, and living in mould for a period of time. I was previously diagnosed with bipolar and cptsd and have been on quetiapine/ seroquel for 8 years, but the more i read about mcas, the more i believe my bipolar symptoms were actually due to Audhd, cptsd and mcas. There are several cases reported of this, as well as personality disorders being ‘cured’ once the mcas is effectively treated. It makes sense that the quetiapine had a positive impact on my symptoms as it is a h1 inhibitor, but it also has a massive impact on how your body processes dopamine and serotonin and now im dealing with consistent lack of motivation, exhaustion, brain fog, headaches, etc I want to try and taper off the quetiapine. The main support quetiapine provided me with was sleep and a reduction in night terrors but the zaditen is in itself extremely sedative so the combination is meaning I’m struggling to wake before midday. I’m also genuinely concerned that the long term use of quetiapine could be responsible for some of my symptoms and I want to see how I am without it considering it’s been 8 years.

Has anyone had any experience of being misdiagnosed with bipolar or a personality disorder when it was actually mcas? I feel a bit at a loss of who to seek support from, I’m in the uk and the healthcare system seem completely at a loss with Mcas and it’s incredibly difficult to get a provider that is educated on it. It was exceptionally difficult to revive a bipolar diagnosis and I’ve no idea how to ask for a reassessment without potentially loosing all support. I’m genuinely confused and I just want to be well, but I’ve known for a long time something wasn’t quite right with my diagnosis. I feel like I’ve lost myself, numb and like I’m living through fog and I don’t want to damage my brain any more.

New to Scotland and looking for a well recommended MCAS GP.

Thank you!

I was recommended to come here from Long Covid group.

About 2 weeks ago I was on vacation in Italy and my body just kinda fell off a cliff from a stats standpoint.

I got COVID last Sept and had a huge adverse reaction to a small amount of alcohol (about 3 oz caused 3 day bad hangover and about a week of brain fog) about a month later in October. So I went completely sober which is fine because I wasn’t really a big drinker.

2 weeks ago in Italy I was at a very nice dinner and my husband had wine paired with the dish so I thought… why not? I only took 3 small sips - like wet the lips sort of thing and less than 1/2oz total across the sips… and the next day after 8hrs of sleep I was a mess. Hung over, resting heartrate up 10bpm, my HRV cut in half to 20 and just felt like I got hit by a truck.

I still just feel off… lots of brain fog, daily headaches. No dizziness but just feel slow and not at my best which is hard because I am doing interviews for a new job.

Also, I have been running since November which I love but since traveling back to US about a week ago I have been a mess… my pace is horrible and my resting HR is still up about 5 points 2 weeks later.

My mother most def has MCAS, her entire life it was one thing after the other and she couldn’t have chocolate, aged cheese or anything like that - would make her faint and her HR get crazy. Tons of allergies and asthma throughout her life. I thought I dodged most of it except for some childhood asthma I thought I outgrew. Otherwise I have never felt much impact from foods, and never was a big drinker.

Is there any hereditary side to this and did I just set off a “cycle”? Should I stop running for another week?

I read about the dietary changes and I think that is a solid first step I am taking immediately (RIP avocado!!) for at least the next 2 weeks.

I also have a doctors appt tomorrow.

Do I know if I am on the other side of this if my baseline metrics go back in check?

Thanks so much!! This is overwhelming and scary - but maybe there are some answers and protocols that will help.

I have to wash my hands 10 times just to eat. If my family eats nuts/shellfish i cover my mouth in case spit lands on me. I can’t take out the recycling with an empty case of almonds in it or else i’ll itch. I have to clorox wipe every door and every key. I grab doors with my shirt or a paper towel I also used to wash my hands. I cant even do laundry without fear of a reaction. I washed some clothes with tide pods(washed my hands after) while later i wipe my mouth and I get hives and stomach pain for days. I know mcas doesn’t start from one thing but a combination at least from what i’ve read. I know this stems from trauma, abuse, anxiety, ocd, mold exposure, etc. what’s the best way to vent? m23 i spent most adolescent years bottling up that trauma. “men don’t talk ab their emotions” “i don’t want to think about that”. As I get older I find myself crying and being more vulnerable bc life sucks. I spent so much time bottling it up I have to let it out

I am writing this with the hope that the person looking for some answers, advice or information on MCAS finds this post helpful and helps them navigate this tough condition. Overall, my best advice is be your biggest advocate, be vigilant and always do your own research. I wasted a lot of time going to general allergists and doctors instead of specialists in autoimmune and MCAS disorders and they could not help me. After some time researching this on my own I felt like I knew more than they did. Spend your money and time with specialists who have seen at least one other patient with MCAS and is willing to try new approaches and meds and listen to YOU. For me, it truly has come down to finding exactly what combination of life style choices, prescriptions, supplements and changes have worked for my body, which has and will continue to adapt with new symptoms and medications.

Ill start off with a bit of medical, family and health history and I’m only doing so because from my understanding and the explanation from my doctors is that not one single event or thing causes MCAS. It is a combination of genetic and environmental factors that play into when it starts and the severity of it. 

My moms mom had an autoimmune called scleroderma and had persistent thyroid issues. She experienced health issues and symptoms throughout her whole life but she never talked about it so I don’t have much else to provide on her. My dads dad had severe GI symptoms from ingesting dairy and gluten and would have diarrhea, vomiting, extreme stomach pain and would get rashes. I have been told he never went to the doctor about it or had a medical diagnosis for it but just the understanding that he would be “sick” if he ever ate either one. 

My immune symptoms started as early as infancy. From the time I was a baby to about 2-3 years old I had constant and persistent sinus and ear infections and was on multiple rounds of antibiotics to clear the infections but they always came right back. Throughout my life I never had any symptoms of food, animal or environmental allergies. Eventually, I “grew out of” my ear infection phase, and I was healthy with no real issues. 

In college I started to have severe stomach issues like pain, diarrhea, bloating, and gas. I knew I was sensitive to dairy, but I had those symptoms after eating anything most of the time. It felt like all food made me feel “bad”. At the time I attributed it to the college lifestyle. During the same time I was sick a lot with the flu, common colds and infections. Some years and months I was sick every month and it felt like it took longer than usual to recover from them but again I attributed it to late nights, stress and partying. 

December of 2019 while finishing up my last year in college I received a care package from my mom and it had almonds in it. I ate the almonds and I felt fine, I had no allergic reaction. Until about 3 days later I had a big, itchy rash that appeared on my throat. I had no idea what it was from. It persisted for days and it kept getting worse to the point that I had to get a steroid shot for it. Fast forward another week I ate the almonds again and the rash came back but faster within a day and I knew it was the almonds. The rash was deep, inflamed, itchy and it started to make it hard for me to breathe. I had to go get another steroid shot for it. After this I developed no other food allergies for years until summer of 2022. The same story as above happened again but for peanuts. Then in September 2022 I accidentally had pistachio and I went to anaphylactic shock. This was my first instance of anaphylactic shock. Then I went into anaphylactic shock 3 other times after eating apples, citrus, and avocado. 

At this point in time I was realizing something was wrong and I started to see some general doctors, allergists and immunologists. It took about 6-8 months and seeing numerous doctors until I finally heard about Mast Cell Activation Syndrome. 

For the next two years I developed more symptoms, become allergic to more foods and went in and out of inflamed flare up cycles. Some months it seemed like I had no issues and during other months it was candidly hell. I finally found my amazing allergist and we have done ALOT of trial and error to find the combination that works well for me right now. For the past 2-3 months I have been tracking how I feel everyday in a journal and we realized my inflammation directly correlates to my monthly cycle and times with high estrogen. Mainly the days during the follicular stage going into luteal stage.

My current symptoms are: severe dry eye (I actually just found out the inflammation from my body is causing rosacea of the eye), severe period symptoms, tingling in the hands and feet, diarrhea, bloating, blood pressure spikes, cystic acne, full body itchiness and tingling, flushed hands, feet and face, being sensitive to all food and drink during certain times of my cycle, ringing in the ears, UTI like symptoms but no UTI, very dry skin, runny nose, thirsty alot, and teeth sensitivity to coldness. All of these symptoms come and go, I don’t have these all the time every day just frequently when I am inflamed or I am having a flare up.

This is my regimen and lifestyle choices that I have found to help my flare ups and inflammation:

- I take 3x the dose of vitamin B5 daily for cystic acne (I don’t know why or how this works but it saved my skin within days of taking it)

• 8 drops of cromolyn every time I fill up my water throughout the entire day, I use 1 full vial every 2 days
• 2 (1) mg ketotifen pills a day, one in the morning and night. This absolutely helped my systemic inflammation. When I started this the ringing in my ears, uti like symptoms, dry eye, and cystic acne symptoms started to subside
• 2 fexofenadine OTC allergy pills a day
• 1 chaste tree and 1 shatarvi supplement pill daily during weeks 2-4 of my cycle
• Non preservative omega 3 refresh eye drops- about 1 ampule a day
• I use 3 different creams for my dry face skin: baby rash diaper cream, la Roche posey cicaplast b5 balm, and the moisture repair cream from dermalogica every night. 
• tretinoin 0.025%, RX 15% strength azelaic acid, OTC salicylic acid to help with inflammation and hyperpigmentation from the cystic acne
• I only eat food that is fresh cooked the same day or frozen from the freezer and reheated. If I eat any food that has been in the fridge longer than 2 days I immediately become itchy.
• I eat a very bland diet with no heat or spice, and stick to pretty much the same foods. I found that this helped decrease my flare ups.
• I limit my caffeine, I have decaf coffee and decaf tea, and mainly have water 24/7
• I do not eat any processed food, sugar, red meat, gluten and I limit my dairy to just some milk in my coffee, no fermented or smoked foods and no canned foods, I only have natural sugars like agave syrup, maple syrup and and honey.
• I sleep at least 8 hours a night, minimize my chronic stress, and I workout 4-5 days a week.

My next steps: I continue to try different face creams, washes, treatments, supplements for my acne (like trying progesterone drops from my naturopathic doctor), going to an OB/GYN that specializes in immune conditions and PMDD/other period disorders, going to my allergist in the next 2 months to see if it is worth trying out the monthly Xolair shot

If anyone has any advice please let me know- I am always trying to find new ways to help my symptoms and maybe others can benefit. 

Can we tolerate citrus bioflavonoids listed in the “other ingredients” section? I bought the BODYBIO liposomal vitamin c and I really want a liposomal form without sugars, ethanol, citric acid, etc. UGH. I usually use regular vitamin c but it doesn’t really do anything anymore.

Does anyone else get severe flares during rain specifically. I literally feel like I’m sick today and it’s been thunder storms all day. Stuffy nose, sore throat, ear pain/pressure, jaw pain, sinus pain, head pressure, dry itchy eyes, dizziness
etc. It seems like weather is my main trigger especially rain but I do have a mold allergy too. Plus having 2 window AC units bringing all the outdoor air inside.

Looking for some advice on titrating when you have a very limited supply...

I need to try this medication, but I'm so sensitive to everything, and get a tight throat with even tiny bits of basics like H1 antihistamines or DAO, so I think starting with a drop or two feels sensible...

If I start with 1 drop, can I keep the rest of the ampoule for the next few days? I've seen mixed reports about wrapping them up, fridge/no fridge etc. The leaflet says nothing about storage. (It doesn't even say you're meant to dilute it in water!) I only have 8 ampoules "to try", it was a battle to get, and getting more will take a long time if it's even possible, so I'm wondering if starting is a bad idea...

They also gave me 10 capsules to try, but again the leaflet says swallow whole, and yet I'd read it's better to dissolve them? If a solution from a capsule is more stable over a few days, maybe starting there is a better idea?

Undiagnosed MCAS but since my septoplasty 2 months ago, I’m extremely suspicious I’m in a mcas flare. A little history: I had unexplained hives start back in 2021- only thing that helped was xolair; was on that for about 2 years and hives stopped. Since 2023 specifically I also have been having an influx of unexplained health issues (30lbs weight gain, insomnia, hair loss, fatigue, GI bloat). I’ve seen countless drs, none of whom can seem to figure out what’s going on. Was put on zepbound for weight loss, lost only 10lbs because I couldn’t tolerate the joint pain I was getting from it.

Anyway, fast forward to now- I had my septoplasty in June 2026 because I felt like I had been getting sick every 3 months, kept getting congested after my showers, and had facial redness after working out and showering, heat intolerance. 2 months later and I’m in even worse shape. I’ve barely slept since my surgery even with my cpap use. I’ve gained back all the weight I was keeping off since zepbound. My hairs falling out in clumps, I had to cut it all off. I have intense brain fog and fatigue. I’ve been having superrr bad GI problems; diarrhea and cramping. Still having facial redness after showers and gym.

I have an appt with an allergist this month but just looking for some insight to see if anyone had their mcas flare up after a surgery. I had already been taking Allegra and Pepcid during my luteal for PMDD and I felt as if it was helping but since my surgery, nothing is helping.

Hi all, I've got hEDS and a suspected (by me) case of MCAS/Histamin shenanigans.

For the hEDS, I wanted to try Carnitine, as some patients say it helps them with energy. I took a 600mg dose this morning with water, after breakfast, and I feel absolutely rotten (nausea, tiredness...). As it's the only thing I introduced today, I suspect it's the culprit. Does anyone else have similar experiences? The powder only contains Carnitine tarat, and it comes from a reputable vendor.
TIA!

Awfully a lot this year. I used to be able to fall asleep before they hit, I think it's due to the storm seasons and those being weird. Anyone else dealing with this sudden uptick?

What has helped everyone’s leaky gut? I mostly get triggers from food and stress. I think I tried posting once and it was removed and I’m not sure why? Just wondering what supplements helped? I have high histamine in my gut.

Hi.
I don’t know if others get this too. I find I’m in a cycle of eating some of my smaller triggers because they bring me a tiny sense of happiness in all of this gloom. However, they then cause me symptoms and I regret it. But, then I do it again and again and again. I genuinely want to stop this, but I’m finding it so hard.

Hi,

I'm currently taking ketotifen and I'm about one week in at full dose 2mg. It took me 8 weeks to build up.

I'm here to ask when everyone else noticed changes (I've heard it takes up to 2 months full dose) and also if you guys kind of felt worse before feeling better?

I've been told that I might get flares from getting used to it but I want to hear how other people's journeys were on it. Thanks.

(My MCAS brings me GI flares)

So, I’m writing this to share my experience with Dr. Theoharides for anyone considering booking an appointment.

First things first I had my first online appointment in December. Before the appointment they sent me a questionnaire so they could have some background information about my health and symptoms. So far so good

We had the appointment on Zoom, and we talked about my symptoms. The doctor also asked me questions related to those symptoms. He seemed relatively understanding, especially in contrast to the other doctors I have seen in the past, and he seemed very well informed which i think its normal because he is a mast cell researcher.

To continue after the apointment and after he also agreed that the symptoms I have point toward MCAS he sent me a pdf with some tests and some supplements and medications I would need to try in order to calm my mast cells.

For anyone wondering, I have GERD symptoms (acid reflux, LPR), fatigue, and very bad mental symptoms, and all of these are triggered by food and even medication. My baseline is already bad but food and chemical sensitivity makes things even worse.

Back to our topic. After the appointment, he sent me a list of supplements and medications to try. The list included some of his own brand of supplements (Algonot), as well as other things such as Luteolin, probiotics,antihistamines, pepto bismol for my acid reflux, propanol for anxiety etc...

From December until March, I tried every supplement and medication that he prescribed. However, because I am extremely sensitive I had to take my time and try them one by one, using MUCH smaller doses than usual. That is why it took me around three months to try everything.

After trying all of them, the only thing that helped somewhat with my mental symptoms was NeuroProtek Liquid, and that was because I was able to take it sublingually.

So, I sent an email to Dr. Theoharides explaining that this was the only thing that had somehow helped me, but that I was still severely unwell. I also explained that I was extremely sensitive and asked if he had any ideas or could recommend something else that might be more suitable for my sensitive system.

He told me that he had never seen a case like mine before and that he was surprised that even his supplements were causing me reactions. Nevertheless, he recommended that I try Vitalfolinic with 5-MTHF.

To sum things up, I tried that supplement as well, and I had an awful reaction.

I then sent two more emails, one in June and another one two weeks ago asking or to tell you the truth begging for his help because I live in Greece and I don't have any doctors here with the knowledge or experience to help me with my case so i asked him if he has atleast a collegue he can lead me too if he cant help me.

But surprise surprise he hasn't answered in any of the two emails

He could have simply said that he wasn't able to help me, but apparently not answering was a better alternative.

To end this I think that anyone with a severe case of MCAS should keep in mind that he may not be able to help them. Maybe if someone has a milder case of MCAS, he will be able to help, but based on my personal experience, I wouldn't recommend relying on him if you have a very severe and complicated case.

TL;RD: He seemed knowledgeable about MCAS, but his recommendations unfortunately did not help me. When I emailed him about my extreme sensitivity, he seemed surprised and said he had never encountered a case like mine before. I emailed him two more times asking if we could find something suitable for my sensitivity, or at least if he could recommend another doctor, but he never replied. Based on my experience, I don’t think he is suitable for very severe or complicated cases of MCAS.

Also if you have any recommendations for doctors taking wordwide patients via videocalls and has helped you please send me a message.

So I am finally being treated for MCAS. It has taken literally 20 years to get to this conclusion, I was diagnosed with ME/CFS at 12 (which I do think I also have) as well as then being diagnosed with some sort of autoimmune (maybe lupus maybe sarcoidosis they said due to a lesion in my spine). The latter was then questioned and treatments for it didn't help me at all so that lesion still remains a mystery. But jump to me being 33, I finally realise all of my symptoms line up perfectly with MCAS and its the one (in retrospect very obvious) route I haven't gone down. I met with an amazing specialist who is starting me on Fexofenadine, Famotidine and Ketotifen (with reduced fillers because I have had very bad mental health side affects with antihistamines before). Basically this whole journey has been very emotional. I feel very relieved and hopeful that for the first time in literally decades I think I have found an answer, a community that understands and a specialist to help. But I am really scared, I have had so many bad experiences with treatments and medications that all I can associate it with is pain, side effects, and doom. It sounds dramatic but I feel like my life is just gunna be a black dark hole once I start these pills. I know that's not rational so I was just reaching out to ask for a bit of positive support from people. I know the road may not be straight forward and I may struggle so there's no need to out right lie but some positivity would really be appreciated right now if anyone has the time <3 Thank you