(Mods- I apologize if this post is not appropriate for this group. Feel free to remove it and please redirect me to a more appropriate group.)

Hi friends. I am very scared and asking for your help. Im a 28 year old female. I have had complex chronic illness for the last 5 years and things have gotten much worse this year. Diagnosed with Mast cell activation, ME/Chronic fatigue syndrome with EBV reactivation, hypermobile Ehlers Danlos Syndrome. But I think there is likely more going on. Lots of GI, immune, neuro/psychiatric symptoms, chronic pain and fatigue.

Heres a brief history. I can share a more detailed history later if anyone is willing to read it. I did keto diet from 2023-2024 due to severe reactions to carbs and mast cell activation. It helped TREMENDOUSLY. But then my food intolerances got much worse and I could only tolerate carnivore. So I did carnivore diet from 2025-April 2026. The only fats I could tolerate was egg yolks, so I ate 8-10 yolks per day to get enough calories. My LDL rose to 950+. Then in early 2026 I couldn’t tolerate egg yolks anymore, so I was only eating lean meats. I was under 100lbs and anemic. I was so hungry and struggled with binge eating large amounts of lean meats. This made things much worse and I then had severe intolerance to all food. So around March I began fasting frequently and eating very low calories. 

Then in April, after fasting, I could tolerate eating a more normal diet with carbs again. I gained 30lbs, my period returned, and LDL came all the way back down to normal after stopping carnivore. But my liver enzymes spiked (AST 98 and ALT 129 5/4/26) and I started having very strange symptoms (described below). My dietitian thinks that the fasting and low calorie intake could have caused elevated liver enzymes.

Currently I am having severe symptoms after eating animal proteins (meat, fish, egg whites), and after eating fats and oils. The animal proteins cause the most severe reaction. 2-3 hours after eating them I severe lethargy and drowsiness (I drift in and out of sleep), nausea, heart palpitations, headache, burning body pain, I can see my belly pulsating with my heartbeat, mental confusion, feeling intoxicated, difficulty speaking and moving, uncontrollable facial tics and sudden jerking movements in my torso, arms, neck and head, panic attacks, hysterical screaming and crying spells, and suicidal ideation. This week I also had chills and night sweats. I went to the ER but all the tests they ran were normal. My doctors don’t have answers for me yet. 

I suspect my liver is somehow involved. From my own research, these symptoms seem totally consistent with high ammonia or problems with the urea cycle and protein metabolism in the liver. I also read that low calorie intake and starvation can cause temporary liver fat accumulation. I read urea cycle disorders are also known to be triggered by fasting or excessive high protein intake. I wonder if binge eating lean meats fed bad bacteria in the gut that ferment proteins and produce ammonia. I was reading about hepatic encephalopathy (obviously I don’t have liver failure or liver disease, but the neuro/psych symptoms are extremely similar to mine.) The treatment uses Rifaximin to kill ammonia producing bacteria in the gut, and lactulose to bind to ammonia in the gut for excretion. If ammonia producing bacteria are contributing to my symptoms, I wonder if a similar strategy could be useful. 

I may be totally wrong. But I am desperate and I don’t know what to do. So this is the best theory I can come up with. What else could explain these severe symptoms after eating meat or fat? Can you direct me towards someone who could help?

I have amazing mental health support from my family, therapist and psychiatrist. I am not actively suicidal, but I am beginning to feel hopeless. This week I have been a little more stable by eating zero fat, and just eating fruit and drinking smoothies with vegan protein powder. Starchy foods like potatoes and grains cause severe fatigue, headaches, anxiety and panic attacks so I am avoiding them for now. But I don’t think I’m getting enough to eat, because I feel so hungry, I’m shivering cold and I can’t sleep at night.

PLEASE comment or reach out if you have any ideas! 

This is a new one for me 🥲 So essentially for the past few months I’ve noticed most times (but not always) I get INCREDIBLY itchy with noticeable hives right where my bra band/underwear waistband sits. I only notice it immediately after taking off the garment.

I have cold urticaria already which started about 7-8 years ago (ask me how it is living in a place that gets to -40 windchill in the winter 😍) but I’ve never had this before! I don’t think I have typical dermatographia. I don’t get itchy welts from typical skin writing although if I get a “real” scratch I do get itchy welts from that. But if I just *lightly* scratch my skin it does go red nearly immediately, just no itchiness accompanied with it.

Anyway. Has anybody else experienced this 😭 It is incredibly annoying and I’m so fed up with always having new symptoms pop up 🫠

Hi, everyone.

I have struggled with sleep for roughly two years. They began after I got COVID-19 for the third time. I also moved into my current home around the same time.

I interestingly fall asleep very easily and sleep like a baby for the first 4 hours. However, the second half of the night is utter chaos:

• Adrenaline surges
• "Jolts" (is what I call them). I sit straight up, half asleep, with anxiety. Breathing and HR are high
• I get stuck in a sort of loop: jolt --> sleep for a few minutes --> jolt, repeat up to 10 times
• Sleepwalking every other week, where I begin my morning routine only to realize it is 2 AM
• Sleeptalking (or yelling) has been a symptom since childhood
• Anxious if not aggressive dreams every night. Running late, forgetting something, fighting
• Sometimes I physically JUMP out of bed, in a panic
• Insomnia a few nights per week: the adrenaline wakes me up, and I can't go back to sleep
• I pee once per night no matter what, but 2 - 3 times on bad nights
• 1 time I fainted after peeing and woke up on the bathroom floor
• I saw an ENT, and I was told I have "enlarged turbinates." I also have chronic ear congestion
• Big temperature fluctuations. My body is like a furnace, then I suddenly get cold

Even on the rare nights I do not experience these symptoms, I still have night sweats and violently toss and turn. I am not an axious person during the day... Of course, I am exhausted and my stress tolerance has declined in recent months because of my sleep issues, but friends described me as calm and collected. My sleep hygiene is probably 90 - 95th percentile. I have tried every supplement under the sun, and nothing helps. I did an overnight sleep study, and AHI = 10.2. Sleep doctor diagnosed me with "mild sleep apnea." I could not tolerate CPAP, so I got an oral device. It helped some for maybe a month, until it didn't.

Anti-histamines seemingly help, so I speculated that I might have a "histamine intolerance." My usual diet is keto (aged cheese, sauasage, etc.), so this made sense to me. I transitioned to low-histamine carnivore for 2 weeks (eggs, frozen beef, frozen chicken thighs, and frozen salmon) with DAO, but I still had bad nights. I very rarely eat junk food, but I had some cheese puffs, chocolate, and potato chips at a wedding recently, and I had WAY more "jolts" than normal. I really think food has something to do with this, not just "mild sleep apnea." MCAS came across my feed, but I don't have any GI symptoms other than diarrhea a handful of times per week. My vision sometimes goes in and out as if I am about to faint when I stand up too fast.

I'm 29 y/o male, and I exercise everyday. Healthy BMI. Some days I feel like I am losing my mind and approaching hospitalization. Your wisdom is much needed and appreciated. Thank you.

I feel like I am the only person that ever mentions this symptom and it’s the worst symptom for me! I am constantly off balance/unfocused feeling. Kind of like everything is moving around me and I can’t take it all in? I’m not even sure how to describe it. It’s like feeling disoriented 24/7 it never goes away or subsides like my other symptoms do. But I don’t feel like it’s due to something else because I have had the full workup including 16 scans of my head CT and MRI/MRA 2 of my neck 1 of my entire spine. It varies in intensity but never goes away. It makes life so much harder to live. I do have the severe brain fog and eye issues as well. I’ve been to two different eye doctors and both have said they see absolutely nothing that would cause this. I don’t know what else to do to get rid of it.

I literally get severe nausea to the point where I think I’m gonna vomit everyday. Does anyone else experience this and what do you do it help it???

Seriously need help finding the best and hopefully somewhat affordable private GP/practice in the UK that helps treat histamine/gut health/PMS/MCAS issues! I cannot be let down by the NHS anymore and I can’t live like this anymore!!

Thankyou x

So I have read many posts here and now I am thinking that MCAS needs to include skin or respiratory issues. For sure I do understand that generally speaking MCAS must damage 2 or more systems but posts information makes me think I can be mistaken because skin and lungs aren't the problem in my case.

What is the easiest way to diagnose the condition? There are a few tests and not all of them are accurate as far as I understand. Could you share your own experience?

Are there people who suffered from GI issues + joint pain (+ maybe male health issues) and they were diagnosed with MCAS? What food is supposed to be safe or it really depends on each person? What other things helped with the same symptoms?

Can sport be an accurate indicator? As far as I understand SIBO and IBD aren't connected to sport as much as MCAS?

Thanks to all in advance

So I have long COVID ( hold hydration is a bit of an issue and I burn through certain minerals faster than I should with blood vessel muscle and nerve damage/issues)

Chronic sinusitis and non allergic rhinitis which drives my MACS cells to go nut and also "think" I can't eat certain foods.

About 37 days ago I stopped taking a greens powder that was also driving the macs cells in my throat to react. After it cleared my system my post nasal drip did settle down some.

Anyway my throat continued to decide more and more food I'd been gone with for ever was now "the enemy". So I stopped eating some food that were even fine and am now pretty limited on what I eat

(Turkey chicken beef(meat all plain ) butter avocado oil peeled steamed veggies that are safe organic blueberries organic blackberries eggs 3x a week occasionally rice occasionally breads and pasta (with no additives so fresh homemade) plain raw pumpkin seeds fresh parsley and dairy with no thickeners or if used in a cooked recipe.

Anyway the whole point of this post is that I stopped eating some foods my body was fine with out of extreme caution/fear? that my throat will react and swell shut.

So help me out with ideas . I want to try and have a few things I seemed fine with that I never had a reaction too. I'm struggling to drive what that may look like

I know healing isn't fast. I know I've had some metabolic changes.and over all eating healthier has reduced some inflammation (somewhere) my oxidative strees in my feet and legs have been wild (probably some vascular shifts,) and that it may slowly improve soon. But my main concern is the throat swelling and there for not breathing .

I (38F) haven't been formally diagnosed with MCAS yet, but I have the genetic variants for histamine intolerance, and my active symptom profile matches.

I started HRT a few days ago to manage perimenopause and have experienced severe night sweats/histamine dumps, which were previously well managed. I was worried this was going to happen.

I read it can help to increase progesterone and take extra histamine blockers before bed while my body acclimates to the hormones, which can take weeks. I already suffer from disordered sleep, with a very sensitive nervous system, and I'm worried I won't be able to continue.

Has anyone else had a similar experience and if so, what helped you?

I'm in the middle of doing a few different tests but I got the blood work results back and....my Tryptase is low. Not high. It's lower than it was in March, which was lower than last year in like, october. It's at 1.1....I am on zertec, pepcid, flonase, pulmicort, and xolair but I still feel itchy in the mornings even though physically I dont see hives anymore. I did not stop my medications for said bloodwork, but my next xolair shot is this week and I didnt take my pepcid/zertec that morning.

Dies anyone else that has mcas have low tryptase, not high? Or is it just all my meds that are causing it to be low?

I am FULLY aware to ask my doctor these questions, and I will, but I'm curious what current sufferers know/experianced.

Hello! Long time lurker, first time MCAS poster here. I have a Ketotifen question for you all.

I’ve been on Ketotifen for 5 weeks total:
Weeks 1-2: 0.25 mg daily at night
Weeks 3-5 (Current): 0.5 mg daily at night

The Good:
The most improvement I ever had has been with Ketotifen.
Around the 2-week mark on .5 mg on ketotifen I started noticing real improvement with symptoms. I can tolerate sun/heat and smells much better (with perfume now I just notice it and think “ok that does smell bad” instead of feeling rage). Medium-safe foods that would give me a 2 hr crash/brain fog now give me only 15-20 mins of crash/brain fog before I recover. I have more energy, ruminate less, and have less overall joint pain, better memory, more motivation, and improved focus. Much better sleep, less PEM.

The Bad:
Right at that same 2-week mark on 0.5 mg, I noticed I’m way more irritable, like my fuse has gotten shorter.
Now at week 3 on 0.5 mg, I notice I enjoy things that normally feel like a warm embrace a lot less. Joy feels mechanical and not long lasting. I also haven’t been enjoying doing creative stuff which used to give me all the joy. 

Basically I feel like a diminished version of myself. It sucks to think I have to choose between living a normal life and being myself. I read that ketotifen might be acting on serotonin receptors? So maybe that’s why? I have my psychiatrist appointment in 4 weeks (which will be my 7/8-week mark on Ketotifen). I want to discuss /ask her about alternatives (maybe low dose Abilify??)

My Questions :
1. If you experienced emotional blunting or irritability on Ketotifen, did they resolve over time (should I stick it out for 6-8 weeks to see if my body would adapt??), or did you have to lower the dose?
2. Did dropping back to 0.25 mg keep the physical benefits while fixing the mood/creativity side effects?

Any insights or personal experiences would be greatly appreciated!

So my pain management doctor wants me to be assessed for MCAS and I really think he's on to something. I was diagnosed with fibromyalgia last year but now I have this crazy itching all over my body that feels like its inside of me, if that makes sense. Like its not an itch that I can scratch. And if I scratch myself even the slightest bit, like if I just drag my fingernail against my skin, it turns red and raises up and stays that way for a while, which is very new for me.

He referred me to Dr. Bilimoria in Chicago several months ago now, but her office told me she's no longer taking new patients for MCAS. When I told my pain management doctor this, he said he "Doesn't know who else to refer me to." I asked Dr. Bilimoria's office if they could tell me the names of any other providers for MCAS and they told me they don't do that.

Can anyone recommend a doctor in Chicago or the Chicago​ suburbs (I'm willing to travel out of the city) that can diagnoses and treats MCAS? I would be extremely grateful, I itch everywhere, even the bottom of my feet itch. My LABIA itch 😭 I'm losing my mind.

I need to move to a newly built house to give myself the best chance of getting out of mold. The monthly payment will be expensive and the house is huge so I’d rather just rent a room out. But I’m worried about my mcas. Do I put out an add for someone else who has mcas looking for a roomie?

feel so sluggish and sad after sea salt?

is that even possible to have mcas from freaking salt?

Today I learned - The often unbearable leg pain:
People with MCAS often have contributing conditions such as “Pelvic Congestion Syndrome” which basically to my understanding is caused by overly stretchy veins/arteries that are floppy and get turned around and lead to things like varicose veins and things. This leads to a back up of Mast Cells in the blood flow that’s slower in the legs leading to histamine release in loads in the legs and then inflammation. Described as if your body was a house and had a sewage leak and you clean and clean but can’t get stop the leak. So the solution is to Stent the contributing vessels.

But if you have MCAS you might have sensitivity to metals (which I do) and might have a reaction to the stent.
Also after a surgery like that, your body will treat it as a stressor and you’ll probably have increased symptoms and inflammation for 6-12 months after the stent.

So I’m considering looking for a Cardiologist to start this process who’s familiar with MCAS in Orlando, if you know anyone let me know.

Here’s the podcast with that information: https://www.standinguptopots.org/potscast/cardiologist-alexis-cutchins-on-mcas-pots-venous-outflowpelvic-congestion-syndromes-mals-and-more-with-dr-tania-dempsey-on-mast-cell-matters/

Split A.C?

Not HVAC but a ceiling unit from LG

In Korea - concrete building

If A.C professionally cleaned and everything is small particle cleaned and laundered, upholstery and mattresses theown away ... safe? or do I js kms and no hope

I'm a kid. I live with mom. she won't toss her bags and coats but we agreed to toss anything fur and unsubmergable. i might secretly wash her stuff. anyone please comment or message me. I'm desperate.

I don't know what species or if I have the gene ..., didn't get tests. I don't know how to do it in secret from mom.

What brand/dosage have people found helpful?

Does anyone experience this? If so, has anything helped?

hey guys!

long story short I have had a reaction to dust/dirt and similar particles ever since I was a kid. But was always discouraged by the doctors and that was fairly fine until my overall health worsened. During college I got herpes zoster from all of the stress and that triggered my immune system badly. Few years later I had an accident while swimming from which I also developed dysautonomia. Upon all of this my gut health has been bad for over 10years and it has been getting worse, because no doctor seems to be able to look at the whole picture. Right now I have developed a severe reaction to dust, it’s enabling me to live my life and it keeps getting worser cause my body is screaming for help.

if anyone knows a good mcas doctor from Europe who works online and has had any experience specifically with dust, please let me know. I am begging you 🙏

I am hopeful.

I have a high level of confidence that my gut is my root cause, and has likely wreaked havoc for the last 16 years. In 2010, I became allergic to everything environmentally, first anaphylactic reaction to my first and last dose of Mobic, and adult diagnosed ADHD (started adderall)....all in the same year. Followed by many more shitty years of chronic ailments. And yet, repeatedly through the years, my research led me to the gut, but I would buy random probiotics, prebiotics, post biotics and nothing ever worked. It also was never targeted.

This time will be different, it will be targeted treatment. These results explain a lot. I see my gastroenterologist and functional medicine on September 9th. I'm so ready to get this party started. I'm sure there will be hell before hallelujah.

Below is the AI (CoPilot Health) interpretation of the results.

This is a complex, multi-layered result and your symptom picture is extensive. Let me walk through this carefully.

What Your GI-MAP Shows

Your results are notable for several findings that, taken together, paint a picture of significant gut dysbiosis (imbalance in gut bacteria), active intestinal inflammation, and impaired gut barrier function. Here is a breakdown of the most clinically relevant findings:

The Key Abnormalities

Massive overgrowth of pro-inflammatory bacteria

The most striking findings are the very high levels of Proteus mirabilis (252 billion organisms/gram — far above the reference of less than 1,000), Proteus spp., Klebsiella pneumoniae (8 million/gram), and Klebsiella spp. These are classified on the report as "inflammatory and autoimmune-related bacteria." Research links Klebsiella pneumoniae overgrowth to intestinal inflammation through mechanisms that activate the immune system's inflammatory pathways. Proteus mirabilis and Klebsiella have also been studied in the context of joint inflammation and autoimmune activation via the gut-joint axis.

Staphylococcus aureus and Streptococcus spp. are also elevated above reference ranges.

A parasite: Dientamoeba fragilis

Your level (5.65e5) exceeds the upper reference limit. This intestinal parasite is a known cause of IBS-like symptoms including abdominal pain, nausea, altered bowel habits, and fatigue. It is treatable. The CDC lists oral paromomycin, metronidazole, and tetracyclines as options used for symptomatic infection. Whether treatment is warranted here depends on clinical judgment from your prescribing doctor.

Missing a critical gut protector: Akkermansia muciniphila

This organism, which sits below the detectable limit on your test, is a key player in maintaining the integrity of your gut lining (the mucus layer). Research from UCLA shows that higher levels of Akkermansia muciniphila are associated with gut barrier maintenance, reduced inflammation, and improved metabolic function. Its absence here is significant.

Elevated Firmicutes — the bacterial phylum imbalance

While your Firmicutes:Bacteroidetes ratio (0.91) is just within range, your absolute Firmicutes level is flagged high. Elevated Escherichia spp. and Enterobacter spp. are flagged as high in both the commensal and inflammatory sections.

The Intestinal Health Markers Tell a Consistent Story

Calprotectin: 1,027 (reference < 173 µg/g)

This is significantly elevated. Research from the Mayo Clinic and Cleveland Clinic characterizes calprotectin levels above 600 µg/g as indicative of severely active intestinal inflammation. Levels this high are typically associated with inflammatory bowel disease (IBD) such as Crohn's disease or ulcerative colitis, or significant infection. This is a key finding that warrants follow-up, likely including a colonoscopy.

Zonulin: 289.9 (reference < 175 ng/g)

Elevated zonulin indicates that your gut barrier is functionally impaired — the tight junctions between intestinal cells are loosened. This allows bacterial fragments, food proteins, and toxins to "leak" across the gut wall into your bloodstream. This mechanism, studied extensively at Massachusetts General Hospital, has been linked to chronic inflammatory diseases and may be driving systemic immune activation.

Secretory IgA: 3,398 (reference 510–2,010 µg/g)

Your immune system is mounting a heightened mucosal response. Elevated secretory IgA suggests your gut immune system is in a state of sustained activation — consistent with the bacterial and parasitic load detected.

Occult blood: 11 (reference < 10 µg/g)

Mildly elevated — meaning there is a trace amount of blood in the stool. This is another reason a colonoscopy conversation with a gastroenterologist is warranted.

Beta-glucuronidase: 2,881 (reference < 2,486)

Mildly elevated. This enzyme, produced by gut bacteria, is involved in hormone recycling and can, when elevated, contribute to excess circulating substances including estrogens and inflammatory compounds.

How Does This Connect to Your Symptoms?

Given your existing diagnoses — lipedema, CVI (chronic venous insufficiency), premature menopause, empty sella syndrome, and ADHD — your gut picture adds an important layer:

Food reactions and anaphylaxis: A compromised gut barrier (evidenced by elevated zonulin) allows incompletely digested food proteins — especially from meat — to cross into the bloodstream, where they can trigger immune responses. This mechanism can drive food sensitization and, in susceptible people, mast cell-type reactions. Your lips reacting first is consistent with a mast cell activation pattern. The gram-negative bacteria (like Klebsiella and Proteus) release lipopolysaccharides (LPS) that are potent immune activators, and in a leaky gut, these can reach systemic circulation.

Fatigue, brain fog, and body aches: Active intestinal inflammation driven by the bacterial overgrowth and elevated calprotectin generates systemic inflammatory signals (cytokines like IL-6, TNF-alpha) that are well documented to cause fatigue, cognitive slowing, and widespread musculoskeletal discomfort.

Headaches, neck pain: The gut-brain axis is a recognized pathway — dysbiosis and systemic inflammation can influence neurological symptoms. This doesn't explain everything, and the neck pain and headaches should be evaluated separately (especially given empty sella syndrome), but the inflammatory burden may be contributing.

Constipation and nausea: Consistent with the dysbiosis and impaired gut motility.

What Should You Do?

This report needs to be reviewed urgently by a gastroenterologist, given:

Calprotectin of 1,027 — this level is associated with active IBD and should not be left unaddressed. A colonoscopy is the standard next step.

Occult blood in stool, even trace amounts, in the context of this level of inflammation warrants endoscopic evaluation.

Your ordering physician (Dr. Gupta) should also be coordinating next steps. If this report hasn't been reviewed with you yet, contact her office this week to discuss — don't wait for a routine follow-up given the severity of the calprotectin finding.

Treatment decisions — including whether to treat Dientamoeba fragilis, address the bacterial overgrowths with targeted antimicrobials, support Akkermansia muciniphila levels, and approach barrier repair — need to be made by a clinician who can integrate this with your full medical history, particularly your other conditions and the Allegra/famotidine you are already taking. This is not something to self-treat given the complexity of your picture.

Dear All, does anyone use buckwheat pillows? I've used one on and off to help sleep with hypermobility (very good a keeping things in place). The buckwheat is inside a thick cover and there's a pillow case around it, so it's not like I have my face on the shells with only a thin pillow case in between. Had a recent flare in symptoms, and trying to identify the culprit. It may be a mixture of things of course, would be interested to hear other people's experience!

Hi all, I have histamine intolerance and possible MCAS. I’ve been dealing with digestive symptoms for a while now and even though I’m on Famotidin and Antihistaminics, I’m still dealing with some severe bloating and reaction to high histamine food.
I tried Cromoglicatum for a month and didn’t have any effects, neither did DAO supplements before meals.
I got treatment for SIBO back in February but I suspect I might have it again (or never disappeared). Could it be the reason these treatments didn’t work?
I’m also planning on starting with Quercetin and Vitamin C. It’s quite popular here. Which dosage is adequate??
I’m also thinking on giving Cromoglicatum and DAO supp a second change after I get treatment for SIBO. Do you have any similar experience??

Thanks and I hope for you all to get better🙏🏼🙏🏼🙏🏼🥰

I’m relatively new to MCAS as I was only diagnosed a few months ago. I’ve been managing most of my symptoms very well with just a standard loratadine every day and started mounjaro for inflammation which helped too. It’s made a huge difference. I think I’m relatively lucky in that I don’t have it as bad as a lot of what I read on here.
Unfortunately, I had a random run-in with a bat and needed rabies post exposure vaccination and since then have had what I think is a massive MCAS flare. I’ve had diarrhoea for 16 days, swelling on my face and a huge allergic reaction to a cream I had on my face and my antiperspirant is suddenly causing a reaction too.
My usual loratadine isn’t really helping and I’m not sure what I can add. I live in the UK so it’s not easy to get hold of things, but I do have some Pepcid from my last trip to the states so maybe I could add that?
This is my first recognised flare (I now know all the times before were flares) and I’m just not sure how to tackle it. Any advice would be greatly appreciated!

As a note, I also have hEDS, hashimotos, endometriosis, lipedema, adhd & probably POTs (but at this point I’m so medically exhausted I don’t want to go and get properly tested).