tw: content under a cut for talking about calorie counting (in a positive way), restrictive medical diets, and MCAS 'remission.'
So it's been 5 months since I last saw the GI doctor who took me seriously regarding my mast cell dysfunction, and not only have I gained a LOT of foods back into my diet under his care without experiencing idiopathic anaphylaxis, but I've also managed to eat 2000 calories almost every day for the last 5 months.
Prior to his care, since 2020, I had been mostly surviving on a liquid diet with the odd bit of solid carbs and protein when I could handle it.
Which was better than the 2 things I could digest safely prior to 2019, which were oatmeal and filtered tap water toward the end when I was dying. But even after I recovered from that, any time I went over 700 calories a day in solid food, I'd be writhing in pain.
I still have days when the pain hits, and all I can manage is liquids, but those days are so much less, and thanks to being able to eat more foods, I can at least liquidate more nutrients to make sure I'm getting what I need.
Things will never be 100% healed. That's not the nature of this kind of immune disease. But they're better. I'm better. I'm still so scared to say any of this is in remission because MCAS is wildly unpredictable. But I'm so much better than I was.
And I'm going to go happy-cry and eat a gluten-free cupcake about it.
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shout out to those of us chronically ill people who have stacks of rare diagnoses that took years or decades to dx. Shout out. to those of us in those categories who had earlier diagnoses questioned because of our other, at this point undiagnosed, rare illnesses.
To have a doctor look at something very concrete and telling of a certain diagnosis (for me, it was a muscle biopsy that showed a very obvious mitochondrial cytopathy) and go 'nah i don't think its actually this thing we have evidence of' because you also have another completely unrelated rare illness is gross and inexcusable.
If you are in this situation, i pray that things prevail for you. Remember that you know your body far better than any medical professional ever will, and that no matter what they say, you're not crazy for having inexplicable symptoms.
to deny the idea that someone can be doubly sick with three or more different rare illnesses when we know so little about genetics and all the different ways the human body can screw itself over is extremely and without a doubt idiotic. we all deserve better.
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i have a history of chronic illness, so i've been to many doctors. but you know the one i hate the most (besides the obgyn)? dermatologists.
i'm an afab genderfluid person with mcas. yes, i have acne. but i don't go to the dermatologist for that. i go for other things. but you know what they always bring up? acne treatment. no, thank you.
why do people think i must rid myself of my acne? i literally don't care about it. in fact, it kinda makes me, me.
my acne causes no harm to me. it doesn't hurt. it's just there. treating it could cause me harm (ie. a flare up), so i don't want to risk it.
but society seems to be offended by acne, especially on afab people.
idk this was just a rant. but like i hate beauty standards ughhhh
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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
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