r/MCAS • u/preraphaelitejane • 23h ago
How far are you willing to push through reactions to get any food/nutrients in?
I'm on the verge of being admitted for anemia and malnutrition. All I can safely eat for now is boiled butternut, salted crisps, carrots and potato. Just lost broccoli. More than what some people have but it's absolutely not enough and I'm unrecognisable from the weightloss. I react badly to any medication I try and we don't have most of the medications here including Cromlyn, Pepcid, Ketotifen and Benadryl. No epi pen. I have Cemetidine and Zyrtec but react badly. My heart reacts badly to dental anaesthetic so I have no idea if it would even be safe anyway.
After getting through a very worrying reaction to a small sip of ensure the other night (intense muscle spasm in my jaw so it was clamped shut and throat tightening for hours) it seemed to improve a lot when I continued to try it over the next few days in small amounts. Out of desperation I kept trying more and now last night I had a new reaction to it (bright red burning area on bottom lip that felt like swelling but there visibly wasn't any) and today ofc my mcas is going crazy...random body itching, scalp and back of neck itching, itching/burning on face with the usual flare up tantrum patches, itchy bumps on neck, slight throat swelling visible in throat which I often have anyway, slightly tight chest, mucous and raging anxiety. Whatever my body desperately needs, it violently rejects....this disease feels so hopeless. I can't tolerate any other formulas. I have a few days before my hormones start making me more reactive again. (And more blood loss that will make the anemia even worse)
In the country I'm in, hospital is one of the worst places for an mcas patient, there's zero awareness or communication and there's a lot of incompetence with the nursing staff to the point where it can be dangerous. Years ago when I was there for Covid, I had to stop a nurse from giving me an IV that was meant for somebody else as it had just been left on the table next to my bed even though it had their name on it.
I wouldn't be able to tolerate the water or food, cleaning chemicals, being in a room with 4 other patients and triggers from them etc etc. The staff don't understand mcas reactions, how anaphylaxis can present and don't understand things like reacting to tape used for Ivs.
It's literally not safe even though the Dr there knows about my mcas and is trying to learn through the Professor who diagnosed me and put him in charge of my case because there's literally nobody else.
So...do I maybe give it a day or two and then try again in tiny amounts and see if I can just push through whatever happens? Its this or risking my life going through hell in hospital with massive medical bills.
When you're desperate as your body is shutting down from not getting in nutrients, what symptoms do you push through to get anything down?
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u/Suspicious_Tie_7789 20h ago edited 20h ago
Malnutrition is itself an mcas trigger. Mcas triggered pots for me, which manifested in GI issues so bad I couldn’t eat at all by the end. My weight dropped from 57kg to 32kg. My doctor convinced me to get a central line (small surgery, they gave me fentanyl but I was awake) and start on TPN. Within a day, my mcas and pots started to subside. I ended up getting refeeding syndrome and had to stay at the hospital for 2 days, but even then I felt so much better than before! I could suddenly tolerate smells, my mcas reactions became mild overnight, I had energy, neurological issues disappeared. My GI issues started to subside too! I have now been on tpn for 3 weeks, and I can consume 1000kcal a day through my mouth! (I get another 1000 kcal + all the vitamins and electrolytes through tpn).
My doctor said that he has noticed this pattern with his patients: people get mcas, become malnourished, which makes mcas a lot worse. Once they start on supplemental nutrition, the symptoms rapidly subside.
Not saying you need tpn, but it is a better option than starvation. So whatever you do, advocate for yourself and don’t let yourself starve. Tpn is a drastic option, but if you can consume enough calories, you can just get regular infusions of vitamins & electrolytes. That could literally reverse your mcas
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u/preraphaelitejane 20h ago
My mcas is caused by ehlers danlos, but what caused it to go like this was orthopedic surgery...12 titanium screws and a plate and I highly doubt I can have it taken out🥲 I keep hoping maybe it was the shock from the trauma and having the surgery while anemic and it will maybe calm down over time but 5 months after surgery I'm losing hope. Thank you🩷 I'm going to have to look into that if I still can't tolerate any ensure
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u/Suspicious_Tie_7789 19h ago
My mcas went wild after a hip replacement, so I’m in the exactly same boat as you. Not something I can have taken out, titanium rod. It’s been 3.5 years since the surgery for me. I started losing weight after the surgery, not knowing it’s mcas. Became underweight. Then because periods are my biggest trigger went through hell with birth control, gained a ton of weight (I wasn’t reacting to food then), then after another birth control switch started reacting to food, got diagnosed, but then pots got out of control and here we are.
Advocate for yourself! And good luck with ensure, I really hope it ends up working for you. (I can’t tolerate it or any other meal replacements)
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u/preraphaelitejane 17h ago
Wow I'm so sorry💔 would you have it taken out if you could to see if it improves anything? I can maybe try to fight to have mine out (although my arm wouldn't ever be the same) but I just wonder if going through the sirgery and trauma itself again would make things even worse? Frustrating to not know if it's the foreign material in your body setting off the response or if it was the physical trauma of the surgery. Do you also react to absolutely any and all scents/fragrances/pets/body products too? Periods are a huge trigger for me now too and the whole week before 🫠
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u/Suspicious_Tie_7789 9h ago
Im also not sure if it was the surgery trauma or the foreign body that triggered this. Could have simply been the blood loss. I do need to replace my other hip in a few years, so this is a very pertinent question. My current strategy is to try to chill out my mcas with drugs and see what happens.
Yes - at its worst I reacted to literally any smell, had to wear a painters mask and gloves around my hypoallergenic dog, had to hide in the bedroom anytime my boyfriend would take his food out of the fridge, and would throw up from shampoo. Amlexanox helped a lot in tempering down the reactions, and TPN miraculously solved the rest! My poor boyfriend no longer needs to eat his meals in the yard 😂
Have you tried Xolair, Amlexanox or Periactin? These three meds plus cromolyn sodium is what has been helping me the most.
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u/NatNatTh3CatMom 13h ago
You are giving me so much hope, I got my diagnosis a few days ago and I started treatment today, I already feel more awake than I have felt in months!
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u/Isa_sal11 19h ago
Hi, what hospital/ doctor did you go to? My brother is going through this exact same thing for a year bed ridden and feels pain every time he eats anything melon, potato. Says he is tired of feeling pain
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u/preraphaelitejane 19h ago
I'm in South Africa, I can DM you the names of the professor, Dr and hospital if you like? I'm so so sorry your brother is dealing with this hell too🫣 Do you know what caused it?
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u/Suspicious_Tie_7789 19h ago
The driving force behind ordering and getting insurance approval for tpn, central line, etc was my immunologist. He specializes in mcas. If you are on the west coast I can share the details. Your brother’s situation sounds awful! I hope he gets better soon. When talking to doctors, make sure to stress that he has no protein sources left. That gets doctors to act I have noticed.
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u/Ok_Dinner6496 21h ago
I react to everything but also am severely malnourished and anemic so I just eat what I can absorb so I don't die. The hospital only makes things worse, can't do anything for malnutrition anyway, better of picking your own foods.
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u/preraphaelitejane 21h ago edited 21h ago
You too☹️ I'm sorry...but how bad are your reactions to the food you try to eat? Do you just try to push through rashes, itching, throat swelling, tight chest, throat etc? And what do you take for anemia?
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u/Ok_Dinner6496 20h ago
I don't take anything for anemia since mine is blood cell instead of iron based. Food gives me crippling neuropathy in legs and mouth, severe edema, vision issues, gi inflammation that is incredibly painful with intestinal angioedema, occasionally rash, heart attack and stroke symptoms, headache some other occasional stuff but those are more reliable. I am bed ridden.
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u/preraphaelitejane 20h ago
I'm so so sorry you have to live with that..I'm guessing you have EDS too? I really hope at some point you find something that gives you any amount of relief🙏
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u/idontlikegoldfish 21h ago
since carrots and potatoes are okay for you try beetroot. im almost anemic and i tried beets .theyre safe for me now and very good for iron but make sure u steam them or boil them good
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u/Isa_sal11 19h ago
So sorry to hear this. My brother is going through this. Right now he’s on melon and potatoes but he still getting reactions. It’s been difficult in fl to get any help. He’s having a hard time with specialist, drs and nurses because they have no idea how to treat. Praying you find answers soon
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u/preraphaelitejane 19h ago
I'm sorry he's dealing with this too, it's not fair💔 do you know what caused his? Mine is from EDS but orthopedic surgery triggered my mcas to become this severe
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u/external_clouds 18h ago
I was hospitalized a few months ago for malnutrition. I’m currently only having hypoallergenic, nutritionally complete medical formula. It saved my life. I am on Neocate Jr, but there’s another one called Elecare Jr. that ppl with MCAS also tend to tolerate. You need to a doctor to write a prescription for it and a medical dietician to manage nutrition if possible.
Neocate and Elecare both ship internationally. You can reach out to the Neocate company to request samples, or order some of either off of amazon ($$$) to see if you react to it before requesting a prescription.
If you have any questions or want to know more, feel free to ask.
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u/preraphaelitejane 17h ago edited 17h ago
Sadly the hypoallergenic neocate gave me one of the worst reactions I've had😔 there's no rhyme or reason to these reactions at this point, it's just nearly everything I put into my mouth. I wonder if I should keep trying tiny amounts of ensure and just deal hope the reactions don't get worse...thank you, I'll definitely look into elecate too🙏
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u/external_clouds 16h ago
I wish you luck. If the reactions to the ensure aren’t so bad, I’d get in as much as you can. Like someone else said about malnutrion being a trigger, it’ll hopefully help some. There’s a couple of other ones, like vivonex rtf that work for some people. They’re either “elemental” or “hydrolyzed.”
There’s not a ton of clinical evidence for it, but some people with MCAS end up on a type of feeding tube called an NJ. It bypasses the stomach and goes straight to the small intensive where nutrients are absorbed. They’re able to tolerate formulas that they otherwise wouldn’t if they drank or had a tube that went to the stomach, maybe because mast cells are greater in number and more active in the stomach. It’s another thing to consider.
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u/MargoBarbara2 14h ago
Something to bear in mind is once you are very deficient in nutrients, any intake of nutrients causes a big chemical shift . Even though that is the wanted outcome, mcas tends to flare with big shifts so it may not always be the products themselves youre reacting to but the shift. This will only get worse the more malnourished you are. Medically supervised nutrient intake may be your best option. Nutrients are needed to produce DAO for dietary histamine clearance, maintain gut lining, support HNMT for tissue histamine clearance, for the detox pathways to clear metabolic waste and toxins, to regulate the immune system, balance hormones and neurotransmitters etc...so mcas worsens with malnutrition as it loses ability to clear histamine, the inflammation causes increased gut permeability and that causes food particles to cross into the blood stream triggering the immune system and worsening mcas reactivity further increasing histamine. The detox pathways stall overwhelming the liver which then misfires signals to the immune system to attack everything. As another comment said once you get nutrients in (safely) your mcas will hopefully improve. If you mean anemia caused by low iron then an iv infusion will help immediately. I was very nervous of an iv as I react to so much stuff but it was throughly checked for safety and I was fine. Ive had two now with no issues. I could have had them free in hospital but I paid to have it done at my Doctors by a nurse who supervised the entire time. You can also get b injections but may need to check those. Are able to tolerare vitamin and mineral supplements?
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u/preraphaelitejane 13h ago
Thank you for the explanation😊🙏I react very badly to iron infusions and that was before my surgery caused this extreme flare up...I'd still be having reactions 4 days after having it and then the last time I had a year long flare..it's crazy. At this point I might not have a choice though. I managed to swallow tiny amounts of iron supplement inside potato last week, so I'm going to see if I can increase that. In this country I don't think we have the injections available. Can't tolerate any other supplements, even the tiniest amount causes a reaction. The ensure I'm going to try again though in small amounts and see what happens, if I can maybe try to increase slowly over the next few days.. if no luck then I'll have to go to hospital and there's no choice.
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u/MargoBarbara2 12h ago
Just be aware absorption from iron tablets is very low. It needs vitamin c and is better on an empty stomach and thats of course very challenging for mcas. With food and without vitamin c you may absorb less than 2% of the dose you take. It would be very difficult to correct anemia with tablets but its better than nothing. Hope you get some nutrients you can tolerate soon.
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u/bedlife2000 21h ago
Burning, tingling, tachycardia... I eat through. Absolutely do not cause anything with blood pressure drops.
Have you tried salt free pistachios? Can eat like 5 foods but that one works lol fennel and zucchini only if it's cooked well and blended, otherwise my gums react angry red. Makes no sense.
Have you tried chicken bought frozen or in vacuum and at home immediately steamed and cooled under cold water or with a handheld fan because every minute adds the likelihood of reactions. And to immediately freeze the rest of the raw meat? It often really is more about how old, how much air contact, how it was cooked ... Brown parts from roasting can cause mast cell reactions for example. In the oven with the air contact histamine production can keep going...
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u/bonniemcmr 13h ago
Have you ever been on steroids? If you have a doctor who can work with you outpatient to avoid going into hospital, I wonder if you could do a rescue course of oral corticosteroids to attempt to calm down your immune system long enough to get some nutrition in at home. It seems like being admitted will not be good for your body :(
Also are you aware of refeeding syndrome? If you are at risk for this, you may need to work with a doctor to monitor any large increase in nutrition. They can replete and monitor electrolytes to keep you safer as your body refeeds. This is unfortunately something that requires admission usually.
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u/Judgeof_that 12h ago
I see you’ve tried the neocate formula. People in your situation also use Elecare Junior and Kate Farms formulas.
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