#mast cell disorders

[twisted-rat-king]

why the fuck is my immunologist allowed to just... not write a prescription for a refill of my mast cell stabilizers without warning. I have MCAS. I am allergic to literally everything. OTC antihistamines hardly put a dent in my allergies, even if i quadruple the doses (which is generally the highest you can safely go).

i could literally die without these meds.

[the2amrevolution]

Long post, lots of science but as much plain English as I could. Not proofread. About two conditions in general but also their combined effects on me specifically.

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In my opinion, anyone diagnosed with fibromyalgia, especially if it is has not been responsive to nerve pain medications, or general "chronic fatigue" should be reevaluated using the ICC for ME/CFS.

Patients should also be evaluated for mast cell disorders (mastocytosis - too many mast cells and MCAS - too sensitive mast cells). If those disorders are present, then patients should be reevaluated for ME/CFS after as much treatment as possible for the mast cell disorder.

The presence of ME/CFS is one of the biggest factors when it comes to quality of life prognosis for the hEDS cluster of disorders (hEDS, POTS, MCD/MCAS, ADHD, and ME/CFS), in my experience. The second largest factor is what mast cell triggers the patient has (like allergies but can be anything including chemicals produced as part of natural body processes).

I have ME/CFS, and one of my mast cell triggers is aerobic activity.

ME/CFS can involve an impaired oxidative metabolic pathway (which makes Krebs cycle not work properly) and impaired energy use (ATP to cellular work), so patients are intolerant to anything that consumes energy - aka being alive. The degree to which energy production is impaired and thus the degree of intolerance to energy use is what determines illness severity, and does make very severe ME/CFS fatal because patients can't produce enough energy for cellular processes and replication, leading to multiple organ failure. Mine is considered mild-moderate. Some people with very mild ME/CFS are able to work, and mild ranges from only minor impact on activities to about 50% reduction in activity. Moderate is mostly housebound.

The changes in energy production is what sets ME/CFS apart from other serious and fatiguing illnesses. Studies in patients with renal disease, pulmonary hypertension, cystic fibrosis, and other such disorders showed that they can exercise to exhaustion on day and then exercise to that same limit the next day. They may have mechanical muscle or joint pain, but they are able to produce the same amount of energy. ME/CFS patients cannot do this.

For some this means they can't produce the same amount of ATP (measured by oxygen consumption at anaerobic threshold), for others it means the same amount of oxygen consumption but being unable to convert that into force. For this first group, this means that their anaerobic threshold is lowered - they switch from aerobic to anaerobic respiration more quickly.

Aerobic respiration produces 36-38 ATP (energy, basically stamina points in a video game) plus water and CO2. Anaerobic respiration produces 2 ATP plus lactic acid. So with the oxygen metabolism impairment, an ME/CFS patient literally cannot produce the same energy as someone doing the same activity with the same rate of respiration with no oxygen metabolism impairment.

But what does having aerobic activity triggered MCAS mean?

All aerobic activity in the muscles causes some mast cell degranulation, which releases histamine and other inflammatory mediators into the bloodstream. This is not necessarily anything anyone would normally consider "exercise." It is any contraction and/or relaxation (change from neutral state) of muscle. While it isn't totally understood (and the exact signal to trigger this mast cell degranulation is unknown) its believed that this process happens to help with vasodilation in the working muscles and to help carry oxygen, sugar, atp, and all those other things muscles need to work and to then heal afterwards.

With mastocytosis or aerobic triggered MCAS, the amount of those released mediators is increased. This can mean mildly more inflammation, or it could be to the point of anaphylaxis. Typically its somewhere in the middle. Mastocytosis is usually stable, but MCAS can become more sensitive - the threshold before there is a problem lowers.

Combining those two together, I have a body that has a low threshold for aerobic activity (higher inflammation than a healthy person for the same activity), poor aerobic ATP production, and a lowered anaerobic threshold (based on symptoms and response to D-ribose supplementation, only way to distinguish between poor oxygen use and poor ATP use is very specialized and largely unavailable testing). Being in an anaerobic state also causes inflammation, which is why a main goal of many workout programs is to /increase/ your anaerobic threshold, something its not clear if ME/CFS patients can do at all.

So what I have is constant inflammation in all of my body that can be worsened by anything.

To which we say, "what the fuck? Holy shit. That sucks ass. I'm now amazed you do the amount that you do. Fuck. What can help?"

Medications and supplements to lower the inflammation, avoiding chemical/food/environmental mast cell and inflammatory triggers/treatments to reduce how inflammatory they are, d-ribose supplement to produce ATP on a different pathway, medications to manage the secondary conditions caused by the mcas and inflammation (POTS), resting, and not pushing when my body says stop.

[the2amrevolution]

"Allergy" means you have IgE antibodies against that food. Antibodies will show on tests, but, if you dont eat that food, you can still be allergic without showing it on a test because you dont currently have the antibidies/enough antibodies. When you come in contact with that food again, your body will produce them. The cells know how, they just haven't "needed" to in a while.

"Sensitivities" may be mild allergies or they may be mast cell reactions. Some allergists incorrectly believe mast cell reactions always cause anaphylaxis, but they can be isolated to certain systems and areas of systems (like intestines but not stomach, esophagus, or mouth) and be mild (diarrhea, cramping, migraines, rashes, but no anaphylaxis). A mild allergy will have a positive antibody test and an elevated tryptase level. A mast cell reaction will have elevated tryptase without antibodies. Tryptase is released by mast cell degranulation, which is supposed to be triggered by antibodies or, extremely mildly, by muscle work. Some allergists also incorrectly believe that tryptase will never show as elevated if you haven't had anaphylaxis in the past 24-48 hours, and so there's no point in testing if you haven't had anaphylaxis.

"Intolerances" are caused by missing enzymes. Enzymes break down complex proteins into their simpler and smaller components that can then be absorbed by the intestines and transported to where they need to be used. Without the enzyme needed to break down the protein, the body will try to break it down other ways like increasing acid production (cue acid reflux), slowing motility if you have low levels of the enzyme rather than lack it completely which also allows bacteria to reproduce more to feed on the food (bloating, gas, constipation), and also increasing motility to get the offending food out of your system (cramping, inflammation, diarrhea). These usually also can be tested for by testing for the enzyme, and some have known genetic variations (yes enzyme or no enzyme) that can be tested for. The classic example is lactose intolerance - lacking the gene that allows your body to produce the enzyme lactase. Some enzymes can be synthesized in labs and made into enzyme replacement treatments.

So I would like to make a post about food allergies given the information I've been taught by my allergist regarding my food allergies.

The difference between food allergy, sensitivity, and intolerance.

Allergy. This is the classic anaphylaxis.

Sensitivity. This is caused by allergies, but the risk here isn't anaphylaxis. It's inflammation in gut that can cause fatigue, nausea, diarrhea, constipation, generalized ick feeling.

Intolerance. Your body is literally unable to process the food. It lacks the ability to, which means the food causes inflammation in the gut, causing similar symptoms as sensitivity.

Sensitivities will show up on an allergy test. Intolerance has to take a different test specific for that type of intolerance.

I mention this because I see a lot of fake claiming food allergies that's like "Yeah but I cross contaminated the food with eggs and that didn't kill her. She must be lying." Yeah food sensitivities can be pretty mild. Where if you give them an egg salad, they're gonna be having a bad day. But if you rub egg on their burger, they may not even notice.

Also like there's a lot of medical conditions that can affect a person's diet. They may have stomach issues that means they can't eat a lot of acidic foods, and if saying "Hey, I'm allergic to pineapple" gets you to not put pineapple juice in their drink because it'll cause a flare-up. I'm all for people doing whatever they need to make sure their health is taken seriously. Even if it's outright lying because food allergies is the only fucking thing people seem to take seriously in this world.

Anyways take people's "I can't eat this food" seriously. And don't fake claim them if they go "I can't eat this food but I'm not at risk if there's cross contamination"

-fae

[kirby-the-gorb]

we are about an hour into rare disease day in my timezone! (it's always the last day of february, whether that's the 28th or the 29th.) the true prevalence of mast cell disorders is unknown, as they are often misdiagnosed or ignored. and mast cell activation syndrome, the most prevalent kind of mast cell disorder, only had diagnostic criteria laid out for the first time in 2010. so whether or not it's truly rare is really up in the air!

(personally I suspect it is just aggressively underdiagnosed but I'm not a research scientist or diagnostician right now. and even if it is rare, it's gonna be a lot less so than it was 5 years ago as certain respiratory infections are known to trigger it into visibility. that's what happened to me when I got mono at the end of 2015, further compounded when I got covid in 2022.)

all chronically ill people face a lot of hurdles when it comes to seeking diagnosis, accommodation, and treatment (all of which can be severely complicated by any intersecting marginalities), but rare diseases present a special challenge.

for example, I have an immune disorder. my immune system does not like being alive, my mast cells are way too jumpy and throw a tantrum over every little thing. you'd think an immunologist would be the one to treat me, right?

I've had 6 immunology referrals rejected in the past 9 months alone. multiple major immunology clinics in my major city tied to a major research university outright refuse to see patients with "mcas" written anywhere in their chart.

after 8 years of being debilitatingly ill, and suspecting it was immune mediated for 6, and getting it confirmed beyond a shadow of a doubt by the bone marrow biopsy last month, I will have my second ever appointment with an immunologist. another 2 1/2 months from now. the first immunologist lied to me about the reliability of the one available blood test, when I first came up with the hypothesis by myself 6 years ago, and forced me to abandon my (correct!!! now proven!!!) hypothesis for 3 entire years while we wandered around lost and got nowhere other than even more thorough process of elimination.

okay, well if my immune system is attacking me, maybe it's technically autoimmune? that's the rheumatologists instead of the immunologists, what do they have to say? dick all my dude, I don't have rheumatoid arthritis so they just shrug at me and go "idk, fibro? I don't know why you're here" and send me home with nothing. (I literally had a rheumatologist say to me, verbatim, "I don't know why you're here." buddy it's your job to read the chart and decide if I get seen or not, you tell me. at least he had a snazzy outfit.)

being chronically ill can be a terrible struggle no matter what, but a disease that is perceived as rare, accurate or not, adds a whole new layer of bullshit. (and of course there are much much rarer diseases out there, with even more hoops and dead ends and struggles and all-new layers of bullshit that even I don't have to deal with!)

anyway I'm having a shit time and using this awareness day as an excuse to productively bitch about it 👍

[chronically-j]

crying alone in my room as i process that realistically im going to need a cane at the very least, for my entire life. probably more than a cane. im gonna be on meds for who knows how long probably my whole life for a couple of them. im gonna be in pain forever. i almost wish i didnt get diagnosed because then i could live in denial

[wheelie-sick]

having the hEDS trifecta + lupus is very frustrating because it's just like "okay where is this symptom coming from?" and no doctor can agree so it doesn't get treated

I have professionally diagnosed MCAS

I'd like to share the symptoms of MCAS can cause:

Constitutional : Fatigue, subjective hyperthermia and/or hypothermia, sweats, change in appetite, weight gain/loss, chemical/physical sensitivities, poor healing

Dermatologic : Urticaria, itch, flushing, hemangiomas with itch/pain, various rashes, telangiectasias, striae, skin tags, folliculitis, ulcers, eczema, angioedema, alopecia, onychodystrophy

Ophthalmologic : Irritated, “dry” eyes, difficulty focusing, blepharospasm

Otologic : Tinnitus, hearing loss, coryza, rhinitis, nasal congestion, epistaxis

Oropharyngeal: Pain, burning, leukoplakia, ulcers, angioedema, dysgeusia, dental and/or periodontal inflammation/decay

Lymphatic: Lymphadenopathy, rare splenomegaly

Pulmonary: Dry cough, dyspnea (difficulty taking a deep breath), wheezing, obstructive sleep apnea

Cardiovascular: Presyncope, hypertension, blood pressure lability, palpitations, edema, chest pain, allergic angina (Kounis syndrome)

Gastrointestinal: Dyspepsia, gastroesophageal reflux, abdominal pain, nausea, vomiting, diarrhea and/or constipation, gastroparesis, angioedema, dysphagia (usually proximal), bloating (post-prandial or spontaneous), malabsorption

Genitourinary: Menorrhagia, pelvic pain, endometriosis, vulvodynia, vaginitis, dysmenorrhea, miscarriages, infertility, dysuria

Musculoskeletal: Myalgias, migratory bone/joint pain, osteopenia/osteoporosis

Neurologic : Headache, migraine, sensory neuropathies, dysautonomia, episodic weakness, seizure disorders, non-epileptic seizures, cognitive dysfunction, insomnia, hypersomnolence, restless leg syndrome

Psychiatric: Depression, anger/irritability, mood lability, anxiety, panic, obsession–compulsion, attention deficit/hyperactivity

Hematologic: Easy bruising, polycythemia, anemia

Immunologic: Hypersensitivity reactions, increased risk for malignancy and autoimmunity, impaired healing, increased susceptibility to infection

source

"well that's just everything" ya. that's why I can't figure out where my symptoms are coming from. lupus is also like this. autonomic neuropathy is also like this. my doctors run in circles pointing at the other doctors to solve the problem but none of them want to.

[perihelion-crew-lounge]

I'm just gonna make a post about this rather than leaving the PSA in the tags of a different post:

BEWARE OF BLACK MOLD. Check your houses, check your vents and closets, under the sink, in the cabinets. If you find it, spray the shit out of it with vinegar (not bleach) because that changes the PH of where it likes to grow.

If you have a dampness or condensation issue, invest in a dehumidifier and air filter. I can recommend some air filters that I love if you want. Also filter your water and make sure things are as dry as possible before putting them away.

Here's why, from my experience: Black mold can and will try to kill you. Not only does it fuck up your lungs, it changes your brain chemistry. You will become depressed, stupid, and it may make you want to die. I lost years of my life to mold, I made such horrible choices that I destroyed my first business and got evicted, and all of this I can trace back to the mold, because before living in a house that had mold coming out of every vent and coating the basement and first floor, I made good choices and didn't have thoughts of wanting to die and be consumed by the mold. Also our landlord at the time said that he was "of the old school way of thinking that mold didn't do anything bad to you." Boomer.

For anyone who is already experiencing or healing from mold, CBD oil apparently helps with getting rid of the effects, as does Japanese Natto Beans (they're fermented soybeans that have helped my mental health a lot, especially after COVID)

So be careful, it will trigger mast cell activation syndrome and that is a BITCH to get rid of.

I'm still working on getting rid of the effects from my body, and its been 4 years since I lived in that house.

[agapi-kalyptei]

I appreciate Halsey not even so much because of her music, but because she recorded an album while having 3x more chronic illnesses that are 5x worse than what I have, wrote a few songs about being gaslighted by the doctors and then some rat-faced fart-brained youtuber says she is trying too hard to get our pity.

[ehlers-danloscircus]

Does this mean we can finally get rid of soy in literally everything

[becauseanders]

i hate you ehlers-danlos syndrome i hate you pots i hate you chronic migraines i hate you brainstem auras i hate you central nervous system complications i hate you degenerative disc disease i hate you hypotension i hate you osteoarthritis i hate you fibromyalgia i hate you tmj disorder i hate you carpal tunnel i hate you mcas

[thescrappyraccoon]

Post 4/7

Meme dump for my fellow spoonies! Sending 🥄🥄🥄 and 🩵🩵🩵

[ablednt]

I know the same things don't work for everyone but does anyone have a H1 and H2 antihistamine combo I can get over the counter to suggest? Currently not on either (I've tried a lot of h1 antihistamines on their own but this was long before I knew about MCAS) and the daily agonies are a solid -200 out of 10

[slightlybritish]

hey turns out if i have a manic/depressive episode i get a full body allergic reaction for free

NEAT.

[vulpeculaaaaa]

Hey y'all! I just got diagnosed with MCAS and have been told to follow a low histamine diet.

Do any of you have any tips? Perhaps food brands you can eat?

[chronically-j]

first time taking my forearm crutch out in public. i only took one, idk what but 2 felt like too much, even though i definitely needed both. it went well! no weird looks, nobody even acknowledged it which i loved, i didnt want any attention on it, so to see it get ignored was great. i think using the aids puts my pain into perspective for my family though because while i was waiting in line, my beother pulled me out and had me sit down and he took my place. i was really thankful because it was closer to the end of the trip so the pain was really setting in

on that note, my mcad meds arent ready. they wont be till next monday at the earliest which sucks i was so hoping to try them right away and see how they help! the dr said they could help my constant nausea and make it easier to eat, because my body wont be as upset about things? idk i cant actually remember exactly what he said.

[wheelie-sick]

What is Idiopathic Mast Cell Activation Syndrome?

Idiopathic Mast cell activation syndrome (MCAS) is one of several mast cell disorders. MCAS occurs when there are a normal number of mast cells in a person's body but they over-release mast cell mediators causing random allergic reactions in multiple systems of the body. MCAS is incredibly common being present in an estimated 17% of the population.

Symptoms

MCAS symptoms are incredibly varied and always occur in multiple systems of the body. Anaphylaxis is common.

[ID: A graphic labeled "Some common symptoms of Mast Cell Disease" A graphic of a person standing in the center with multiple organs visible is shown. Around the person are lines pointing to specific areas of the body labeled with the body system and symptoms. Clockwise these read "Neurological headache, brain fog, cognitive dysfunction, anxiety, depression Cutaneous (Skin) flushing of the face/neck/chest, hives, skin rashes, itching with or without rash Cardiovascular light-heartedness, syncope (fainting), rapid heart rate, chest pain, low blood pressure, high blood pressure at the start of a reaction, blood pressure instability Gynecological uterine cramps, bleeding Urinary bladder irritability, frequent voiding Systemic and/or organ specific Anaphylaxis angioedema (swelling) Skeletal bone/muscle pain, osteopenia, osteoporosis Gastrointestinal diarrhea, nausea, vomiting, abdominal pain, bloating, gastroesophageal reflux disease (GERD) Ear/Nose/Throat/Respiratory nasal itching and congestion, throat itching and swelling, wheezing, shortness of breath and more" In the bottom left corner "Symptoms can be sudden and unpredictable in onset learn more at tmsforacure.org"]

MCAS symptoms are specifically not allergies. the reactions may look like allergies but the two are not the same and MCAS is not a condition meaning "many allergies" While MCAS can have some consistent triggers one of the defining features of the disease is that reactions are random and happen unpredictably.

Anaphylactic shock is not a requirement for diagnosis.

Diagnosis

MCAS is diagnosed by an immunologist. It is in part a diagnosis of exclusion and requires ruling out both allergies and systemic mastocytosis as well as other conditions such as certain types of tumors.

Diagnostic criteria for MCAS is debated. Some immunologists follow the symptom-based diagnosis approach in which case the diagnostic criteria are:

Recurring and severe anaphylactic-like episodes that involve more than one organ system

and

Positive response to mast cell stabilizing or mediator medications anaphylaxis-type symptoms

Others follow diagnostic criteria based on laboratory findings. In this case the diagnostic criteria are:

Episodic symptoms consistent with mast cell mediator release affecting two or more organ systems evidenced as follows:

Skin: urticaria, angioedema, flushing

Gastrointestinal: nausea, vomiting, diarrhea, abdominal cramping

Cardiovascular: hypotensive syncope or near syncope, tachycardia

Respiratory: wheezing

Naso-ocular: conjunctival injection, pruritus, nasal stuffiness

and

A decrease in the frequency or severity; or resolution of symptoms with anti-mediator therapy: H1 and H2 histamine receptor antagonists, anti-leukotriene medications (cysLT receptor blockers or 5-LO inhibitor), or mast cell stabilizers (cromolyn sodium)

and

Evidence of an elevation in a validated urinary or serum marker of mast cell activation: Documentation of elevation of the marker above the patient’s baseline during a symptomatic period on at least two occasions; or if baseline tryptase levels are persistently >15ng, documentation of elevation of the tryptase above baseline on one occasion. Total serum tryptase is recommended as the markers of choice; less specific (also from basophils) 24 hour urine histamine metabolites, or 11-beta-prostaglandin F2.

and

Primary (clonal) and secondary disorders of mast cell activation ruled out.

These are not all proposed diagnostic criteria as the subject is heavily debated. Generally, a laboratory-confirmed MCAS diagnosis is considered more legitimate.

Treatment

MCAS is a very treatable condition. Generally treatment follows a path from antihistamines -> mast cell mediators -> biologics.

Epipens are given to MCAS patients with a history of anaphylaxis.

Antihistamines are divided into 2 categories: H1 antagonists and H2 antagonists. These categories are determined based on the histamine receptor each one targets.

H1 antagonists mostly deal with systemic and cutaneous symptoms. H1 antagonists are also further divided into first and second generation antihistamines. first generation antihistamines include diphenhydramine (Benadryl) and Hydroxyzine. These tend to cause drowsiness. With second generation H1 antagonists cause fewer side effects and include drugs like loratadine (Claritin) and cetirizine (Zyrtec)

H2 antagonists primarily affect the gastrointestinal tract and include medications like famotidine (pepcid)

Typically when treating MCAS a person will be put on both a second generation H1 antagonist and an H2 antagonist.

When antihistamines do not treat symptoms well enough the next step is a mast cell mediator. The most common mast cell mediator is cromolyn sodium which is available by prescription only. (this is technically available OTC but it is at 1/50th the dose used for MCAS) Mast cell mediators work by preventing the degranulation of mast cells in the first place.

When both antihistamines and mast cell mediators are insufficient someone with MCAS might be prescribed a biologic such as Xolair to treat their remaining symptoms.

Sources:

American Academy of Allergy, Asthma, and Immunology

Mast Cell Hope

Mast Cell Activation Syndrome: Proposed Diagnostic Criteria