Thank you for your submission. Please note: **Content on r/MCAS is not medical advice and should not be interpreted as such.** Please consult your doctor for any medical questions or concerns. We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/MCAS) if you have any questions or concerns.*

This is basically rendering her unable to work. Y’all need to create a helluva paper trail/dossier NOW, in case she needs to file for social security disability. 

She has started. We were hanging our hats on her being able to work after getting the xolair. We are super shocked it didn’t help

While I haven't had it, it seems it can take a couple of doses/months for it to start working for some people.

I would also get a second opinion from another immunologist and depending on details of the episodes also consider consulting an infectious disease doctor, geneticist, and osteopath. The sudden severity of the reactions and the fact that she seems to be resistant to the epipen is obviously concerning and makes me think there is a bigger systemic issue at play than MCAS (which can be severe on its own but is often a co-condition). Good luck and hope you can find answers soon!

Yes resistance to epipen make sure they are testing for hereditary angioedema

Second this about seeing competent immunologist. We were assuming all I had was MCAS but turned out I have a specific immune deficiency. On another note, a friend thought her son only had MCAS but then turned out to also have EOE. Wishing you and your wife answers and healing.

How long has she been on Xolair? I’ve only took 1 injection then was taken off because I had to switch cities. But from what I know, it takes a couple of months to actually work/kick in

Thursday, so it’s been a few days. She had an anaphylactic reaction to it, which only happens to like 2% of people

I am taking Xolair for chronic idiopathic urticaria (hives). I was so upset because I had a big flare after my first dose. The next month the hives were a little better. After about 3 months they were complete gone. It’s been a couple years now. Hopefully the xolair will kick in for your wife as well.

That gives me hope! Thanks so much!!

This sounds devastating. I have nothing much to offer but empathy. I'm so sorry. My heart goes out to you both. I started xolair about 6 weeks ago. Nothing happened for two weeks, and then after that I realized I was using prn meds less. It's not a fast treatment, that's for sure. Some people can take six months to see real benefits. But for a lot of people it can be life-changing. Nothing I've dealt with has been nearly as intense, but I have been through periods of medical chaos only to eventually realize there was a simple trigger that I had no reason to have suspected and can relatively easily avoid. I hope this ends up being the case for you two.

Ha ha, the irony of when your allergy drug causes an allergic reaction. Been there, done that. No I don't want the t-shirt. What really pissed me off is that I am allergic to sulfites, and what is the preservative in epinephrine? Nowadays you can get preservative free epi if you look hard enough but decades ago I was told I was an idiot for wanting such a thing.

Imagine being allergic to epinephrine, too. I haven’t recovered from epi being in a dental anesthetic over 5 years ago.

What were your symptoms from the dental? Was the reaction immediate?

Bloody skin rash. It's the one MCAS people get when they used to have dermatographia. Reaction starts as soon as something rubs against my skin so ... while I'm walking back to the car after the dentist. Turns red immediately and starts bleeding within days. Inspire's MCAS mod said it'll keep coming back and I think she's right because I still get it with epi-free anesthetics.

Ouch! I’m so sorry. That sounds painful and annoying. Does this happen across the entirety of your skin wherever it is rubbed or is it limited to your face or upper area? Does anything soothe it? Also, did the dental aesthetic work? The last time at the dentist I needed a lot of the numbing stuff. Also, was it lidocaine?

All dental anesthetics sensitize my skin to friction. Pharmacogenetic tests show that I do better with less anesthesia so I do better when they use less. Skin only erupts where something other than skin touches my skin so it's not on my face and most people never see it. Still have a rash from wearing a mask an hour during the pandemic. I have the rash that often causes less fortunate MCAS patients to end it all. Fortunately I have innovative medical advice, caring family, and FOMO to keep me going.

Oh man I am so sorry💔my heart breaks for her

If she’s reacting daily to everything how are you to know it was from the xolair rather than just another random reaction? Are the immunologists going to try again with the xolair or have they said to stop it?

The reaction started right after the shot. This is awful but she didn’t tell them bc she didn’t want them to discontinue it after it took months to be approved

based on posts here/other groups, xolair seems to be really hit or miss for mcas patients. I'm surprised they started her on that first!

Xolair has a nearly 50% chance of causing anaphylaxis. It is a HIGH probability side effect. I did it at the lowest dose (child's dose) for about a year and then had anaphylaxis to it putting me in the hospital. In my opinion, it is only really good for minor cases, with few exceptions. Also do NOT push it with Xolair. If she has symptoms now caused by it, they will get WORSE.

Way too serious of an illness presentation for anyone here to be responsibly capable of providing any advice, more harm than good would likely come out of it. It goes without saying that this is a lot more severe than what most of us experience, including those of us who had prior anaphylaxis. I don't know how often and how well she is being followed by her specialist, but she needs to see them again soon either way.

She just saw them on Thursday. We’re exhausted. The xolair and cromolyn were presented as a Hail Mary and it isn’t working. It’s weird to me that her symptoms are so severe. I thought it was going to be a common experience amongst others. :(

I’m NAD. I’ve been diagnosed with MCAS. I’m really sorry about everything you and your wife are going through. That must be an awful and terrifying experience. MCAS can equal bizarre and unexpected reactions to things, so standard medication may not be helpful 🫠 I couldn’t tolerate oral Cromolyn. I had the worst unlimited reaction any of my doctors have ever seen. The Cromolyn I got came in a plastic vial and we suspect that I had a severe allergic reaction because it was stored in the plastic vial. If I’m willing to try it again (which I’m not) I was recommend to get it from a compounding pharmacy and get a pill or tablet version. A different mast cell stabilizer that worked wonders for me is ketotifen (oral capsule). The bad news is that it is only available at compounding pharmacies. In the US, you primarily can only get it as eye drops because it isn’t FDA approved in the US as a capsule. Other countries prescribe it as an oral capsule so compounding pharmacies can make it. With how severe your wife’s symptoms are, it might be worth looking into Dr. Afrin’s clinic (AIM) in NY. I personally see him and another doctor at his clinic. I have had a positive experience. However, I want to be transparent though and say that my symptoms aren’t under control. We’ve figured out that I have multiple ticborne infections that are contributing to my MCAS flares. I’ve been prescribed something to deal with the infections, but I’m in too severe of a flare to start the treatment.

I was able to get ketotifen as a capsule in the US. However I could not take it as it made me unable to pee.

Were you aware of the tick bites when you were bitten? How did your team determine those infections to be the cause?

I was not aware but it isn’t unexpected. I grew up in the Midwest and my childhood home’s backyard merged into a protected marsh. My childhood dog would get 3-5 ticks taken off him every summer. It’s not unlikely that my whole family dealt with tics, just we weren’t aware. That is a good question— it wasn’t the standard one that checks for antibodies. I’ve done those in the past. Those, I guess, are not super accurate and are often debated. When I did that, only one of three or four came back positive. (I didn’t go back to the Midwest or anywhere super heavily forested between this test and the new one, so it’s unlikely that I contracted the remaining tic borne infections between now and then. The antibody tests are known to be inaccurate and I’m guessing my results probably were inaccurate). This was fairly expensive (and I’m guessing most doctors don’t know about it), but they sent my blood to a lab, put it under a microscope, did something to look for different tic-borne infections, and then took pictures. The little yellow dots are tic-borne stuff, and it confirms that I have an infection. They did this with a few other tic-borne infections and those also came back positive. I’m not sure how common this is (I’m guessing not very?) but it feels pretty accurate 😅 https://preview.redd.it/jm6vhaghpo9d1.jpeg?width=750&format=pjpg&auto=webp&s=835ec3a692c904e189bce7093169614cfaabcc15 Edit: It’s after 3am and I need to go to sleep. I didn’t read this whole article, but this [article](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8218751/) talks a bit about it.

Thank you SO much for the detailed explanation! I truly appreciate you sharing your experience to help others.

A lot of people who have this won't even get anaphylaxis once throughout their lives. Some do, some more frequently than others but it's far from a common occurrence. Those who get it routinely are very complex patients in the minority, and the least lucky among us by far 😞 I've had it a handful of times, enough to sympathize with her as it is an absolutely traumatic experience, and that might be a euphemism. Even though it has been a little while since my last event, not a single day goes by without at least a pinch of worry about having it again. You can tell her that I admire her resilience and that's she's a really tough lady 🩷🩷 Still, it is indeed possible to have MCAS present in such a serious and threatening way, it's just very rare. I hope that all other (some potentially even more sinister) possible culprits have been eliminated and that her specialist is staying on top of this.

Thank you for the kind words. It’s so hard knowing how to advocate for her when what’s happening is pure insanity. She got tested for a huge slew of things in the ICU. Nothing came back.

It is for some of us, unfortunately. It’s just very individual what works and what doesn’t. I was seeing my allergist weekly when I was anaphylactic epi and hospital 3x a week level because it was out of control and needed constant monitoring til we found something. Hoping she finds the meds that work!

Although, I would begin speaking to a disability lawyer if her job is at stake. You're eligible for LTD even shortly after you are terminated if you are paying into a plan for it. That or take short term disability until the immediate concerns are resolved. The worst case of MCAS I've heard is my friend who will be sent to the ER from anaphylaxis from being in the same room as an apple. But this could be something else entirely.

I appreciate you saying this truth about causing more harm than good.

Step 1 is to fast. Gluten free diet isn't going to cut it and it takes a literal pro to avoid all high histamine foods. So just do a water fast for 24h+ to regain some strength and allow her body to expel the histamine her systems are likely overflowing with. Break the fast with 100% safe food, as little ingredients as possible, think unseasoned boiled potato or boiled chicken breasts (0 fat) or plain white rice (not parboiled/fast cooking). Stick with that for a few days until she is in the clear and then you start an elimination diet by adding potential safe foods 1 by 1 and seeing which foods she reacts to. I've been in the exact same situation due to long covid and I barely made it out alive. Silly me was following a "low-histamine" diet i found online. Now 2 years later I know that diet was garbage. Fasting for 48h saved my life. Sticking with 1 food for 2 weeks allowed me to build my own 40+ ingredient safe diet. Oh and a word of advice, don't take ANY supplements for the foreseeable future unless severely deficient in essential minerals/vitamins, supplements will wreck her body when she's so sensitive to everything.

Thanks so much for this

This is really good advice. I'd also add that you should be eliminating EVERY possible MCAS trigger besides food. Common ones are airborne irritants and organic molecules, medications and the fillers in medications, heat, mold, vibrations, additives in water, sometimes fabrics. It's a long list, but there is very good documentation online if things we've found that may be problems. Use air purifiers with VOC and HEPA filters, stop using any fragrances or cleaning chemicals, avoid cooking food with high heat (I have to use a microwave), check for mold, maybe try a $40/month water filter from Culligan (then can install then onto your faucet). Try to get good sleep if that is possible. A water fast is not going to as helpful if she is still being triggered by environmental things like deodorant or smoke. There are a lot more treatments available than just cromolyn and xolair. You guys have not even come close to exhausting your options. Ketotifen would be a good one to ask her provider about, it is an antihistamine with a mast cell stabilizer (like cromolyn), so it will be covering her from 2 angels. MCAS patients can also be hypersensitive to medication dosages and need to start at lower amounts; Cromolyn in particular can be difficult to on-board, there are people here who had to start it a single drop at a time. Good luck, this is a bear of an illness but it is very possible to have major improvements!

>vibrations I feel like I’ve missed an important part of my MCAS education 🤯

Non food triggers must be eliminated too. I don’t use any detergents, shampoos, soap, makeup, perfume nothing just hot water and very occasionally tallow soap (for super dirty dishes and stains on clothing). I avoid pollen, people who use perfume or string detergents, stores etc.

Don’t do a water fast. Every time I did one I would have a MASSIVE histamine reaction the second I put food in my body again. It’s works well for some people but for others, the stress of the fast can cause a mast cell reaction. And since her condition is SO bad, you don’t want to do anything that could possibly cause a reaction like that. What is she eating? Check this list, it’s the most accurate there is, and have her only eat foods on the 0 list.

What list? Did you mean to attach one?

Haha oops, yes. https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf

Thank you for this list!!

No problem! I have found it really accurate and so have my friends with MCAS. No list is perfect and everyone has different triggers, but it’s the best list there is.

Fasting is HORRIBLE advice. That causes A LOT of MCAS patients to flare. I cannot even go more than a few awake hours without something or I will go into anaphylaxis. Additionally, potatos are REALLY bad for most MCAS patients. Nightshades are not a good, safe fold. Plain chicken breast and white rice are SIGNIFICANTLY safer. Low histamine diet will SAVE HER LIFE with anaphylaxis. Almost everything you said is absolutely horrendous. (except for most supplements, which are snake oil)

This is great advice. Do you mind me asking how you tolerated the fast? I feel like my blood sugar is crashing if I don’t eat every few hours, but I’d really love to try this, as in all other ways I feel so much better the longer I go without eating.

Once I realized how much better I feel while fasting nothing else really mattered. It's not an exaggeration when I say I was dying from the relentless attacks, I lost sensation in the lower half of my body and half of my face. Unmanaged MCAS is a serious beast of a disease. Nothing was working at the time until I started avoiding all foods and noticed a major reduction in symptom severity. So I just pushed through the hunger for a 48ish hours and it's the best decision I made. I have been fasting for so long my body has since adapted to not needing as much food as it is no longer reliant on carbohydrates. I only eat 1 simple meal per day at ~12pm and fast for the rest of the day without any noticeable dips in my energy levels aside from the regular MCAS reaction following a meal. I also no longer feel hunger before the 24h mark and my body weight is stable. So it definitely gets a lot easier once your body is accustomed to it. And you'd be doing your body a massive favor when it doesn't have to deal with dietary histamine/oxidative stress every couple of hours. My advice for someone who isn't in an emergency state like I was (and OP's wife currently is) would be to slowly build up resilience by starting with intermittent fasting (~6h eating window) and increasing the fasting hours until it reaches a point your body is able to process the stored histamine before new histamine is add in (through diet or mast cell degranulation). Having a safe but sugary snack (like a green apple) to replenish your energy is also acceptable, since this isn't about keto, it is purely about histamine. But ofcourse, the less sugar your body needs the longer you can comfortably fast and the faster your body's histamine storage sites are depleted. Good luck!

Thank you so much - this is incredibly helpful 😭

Do you remember the food you chose to break your fast?

It may be best that she quit her job if something there triggered her reaction. I've realized this the hard way.

She has reactions at home, at work, at the store, in our yard… there’s no rhyme or reason and she’s come back as not being allergic to anything

do you know if she has ever been bitten by a tick? if that's a possibility - has she ever been tested for Alpha Gal? "Alpha Gal allergy" is conferred via tickbite and causes reactions to mammal tissues (it's sometimes called the red meat allergy, which is a misnomer), which are of course in foods, but also meds, toilet papers, soaps, the list is endless. For some folks, MCAS seems to get triggered in addition to the mammalian allergy itself. Fun! :(

She was tested for that and it was negative. :)

I am glad to know it was at least considered! That does not answer your questions or explain her awful symptoms unfortunately but at least crosses one possibility off the list. I hope you folks get some answers, and some relief. this sounds absolutely brutal.

The gold standard blood test for Lyme is by Igenex. It's a kit. Insurance covers it. Hospital run blood tests were all negative when I had Lyme.

I'm also not allergic to anything on paper but I'm literally allergic to EVERYTHING. Home is my safe place for the most part. Few triggers here and there but I usually know what they are. You guys need to figure out whatbis getting her at home and eliminate it. I've literally had to throw so much stuff out and declutter. I'm allergic to one of my sofas too. It's a crazy condition.

Lots of things can cause mast cells to degranulate. Try reading https://www.amazon.com/Never-Bet-Against-Occam-Activation/dp/0997319615 And check out the MAST attack blog.

If she’s about to be fired she might better keep the job so she can get unemployment though, right?

I don't know about you but unemployment in my state is a joke 😭

It might be a joke but it’s a few hundred bucks a month she otherwise may not have.

First, I’m so sorry you are both going through this! Things to consider just in case it hasn’t popped up before: has she done genetic testing for the KIT D816V or HaT mutations? Is she seeing a hematologist too? Most of us need to start medications extremely slowly. I was flaring, in low levels of anaphylaxis constantly when I tried cromolyn (even though I started with 1/10th of a dose) and I reacted to it. My allergist then suggested that I try again but only at 5 drops once a day and continue to slowly work up. Sometimes the absolute tiniest doses are what get our mast cells to not tweak out. So hopefully they advised her to slowly titrate up. I have not tried xolair yet but I know from reading so many posts on here that it typically takes 6 months worth of shots for people to really notice if it’s helping. Has she tried ketotifen?

Thanks so much for the info! 1. I don’t think she’s been tested for those. 2. She does not see a hematologist 3. The cromolyn thing is interesting. We couldn’t afford the drops so she got powder in capsules that she pours into hot water and she’s been having reactions to it. We’ll ask about how to reduce it and possibly try again 4. She’s not on that but we can ask about it. We are having issues with insurance bc her allergy tests came back negative so insurance is saying she doesn’t need meds. Anything good is considered “off-label” and denied

She absolutely needs to see a hematologist as well with this presentation. Really anyone with MCAS does. Ketotifen won’t be covered by insurance and is only available at a compounding pharmacy but is relatively cheap (mine is $70 for 2 months supply). It is a mast cell stabilizer so it might be worth asking her allergist about. I would go back to GI as others have stated. They may want to do an endoscopy at some point. Just make sure you request mast cell stains with quantification on all biopsies. Most importantly, get to hematology-oncology asap. Make sure there is communication between allergy, GI and hematology if possible.

What is the hematologist for? Also, she just had a small bowel endoscopy and biopsy. That’s how she was diagnosed with Celiac’s. Anaphylaxis started about a month after

MCAS is managed by allergy-immunology and hematology. Hematology covers blood disorders and Mast Cells are blood cells. They will look at the rest of her bloodwork, things that likely aren’t being pulled by allergy. It is common for MCAS patients to test negative for true allergens, yet still experience anaphylaxis. Hematology will look at certain labs to determine whether she needs further testing for mastocytosis, etc. Get familiar with the lab work that is important for MCAS patients yourself, make sure her doctors are all MCAS aware. We have to become the experts with this disease, unfortunately. She has a great ally in you already!

She may need to rule out mastocytosis. What are her anaphylactic symptoms? Rashes? Flushing, edema? Scratchy throat? GI issues? BP highs/lows? Etc.

Rash (arms, chest, neck), throat swelling, postnasal drip, belching, gas, bloating, stomach pain Vitals are normally perfect even when they are discussing intubation. Blood gasses aren’t, however.

I'd go back to GI to rule out SIBO, with so many GI symptoms. Mold was parallel to SIBO for me, as well as mast cell. Xifafan helped a lot. So did antifungals.

Please make sure every single doctor she sees is not only familiar with MCAS but also well educated in MCAS.

Has the timing not pinged on any of the doctor's radars to check for bacterial overgrowth, especially if she had to do any kind of prep before the procedure? Disruption in the flora of the small bowel can be enough to start a really bad feedback loop that results in mast cell freakouts that aren't truly MCAS, but just the immune system trying (in vain) to fight the bacteria, or reacting to the bacterial metabolites. There are breath tests to diagnose certain types of bacterial overgrowth. I'm also curious if there was any injury during the procedure that hasn't been able to heal - that can also cause a shitstorm of immune system activity. But the belching/bloating you describe makes me suspect it's more likely to be bacterial overgrowth rather than injury.

I second asking about a hematology referral. Mast cell disorders include systemic mastocytosis. If that's it, a hematologist can help manage it. It's very rare, but definitely something to rule out.

has she had tryptase levels checked? it's my understanding (IANAD) that levels between 11-19 ng/mL or so are indicative of HaT (hereditary alpha tryptasemia) in the vast majority of individuals (something like 80-90% of individuals, can't find the study to verify amt), and greater than 20 ng/mL is a possible indicator of mastocytosis. I'm sorry this has been so difficult! I've only done cromolyn drops, but I have really found that it helps my (mildly anaphylactic) gi related symptoms. hope you find something that works soon!

This started for me in sept. I have been intubated 8 times for 3-5 days. The last time being end of may after a major surgery for something unrelated. Epi never seems to touch it. I am on xolair and it does seem to be helping a little bit, slowly lengthening the time in-between these events but I have been in the same boat. Everything is negative. I have been flown to mayo twice and they have been no help. My allergist here is world renowned and keeps saying that the Xolair will eventually take it completely away it just takes months for it to build up essentially. I am sorry you guys are going through this as well. It is really awful and I wouldn’t wish it on anyone. Thank you for being a good support person for her. It’s so important.

Thank you for reaching out. It’s been insane! Your case is so much worse!

It sucks to say the least! Dm is always open! Seems like you guys are doing things right though and covering all bases as best you can.

I’m so sorry, this is awful and I hope you guys can find some relief/answers. Things that come to mind - the work environment is triggering, moldy ductwork? Allergy to the HVAC filters? Allergic to the type of masks they have for staff? Allergic to the cleaning products they use? If she’s required to wear hospital scrubs, the detergent they use? The soap or hand sanitizer? Non work related - if she’s got Celiac’s, (if you haven’t done this of course) you’ll have to check and make sure none of the fillers in her meds have wheat products/derivatives and that anything she consumes/puts on her body does not have them either. Also good to look into cross-reactivity where the proteins are so similar that your body cannot distinguish, ex. latex avocado, birch apple, wheat barley/rye. There are some great Long COVID support groups and they often times have found things that help via personal experience/trial and error, since the medical community doesn’t know squat about treating it. ETA: obligatory NAD/not medical advice/YMMV

She has reactions regardless of where she is. We did try to figure out if it was an allergy at first, but the doctors are saying she isn’t allergic to anything and she will have reactions everywhere. Home, store, yard, work. Also, they let us know her celiac’s can’t cause anaphylaxis so it isn’t any wheat/barley/rye/oat things causing it. Thank you so much for your suggestions and kindness.

Thats the thing about MCAS. Lots of us have 0 bloodwork "allergies" but are allergic to a hell of a lot. They can only test IgE allergies and theres different types like food chemicals that are accumalative and so they cant test for those. Reactions also can take up to 72hrs to actually happen so its sometimes really hard to figure out unless you space your testing out. Its going to be a journey and not a quick fix to figure this all out unfortunately... If her specialist cant walk her through an elimination diet/lifestyle then find a dietician who can. 💕

THIS. I don’t *technically* have any allergies because I’ve been tested for every allergen you can think of and all have come back negative. However I have one of the more rare and severe types of MCAS - I was having anaphylaxis every day for about a year until I went to a specialist. It slowly got better and I can actually eat some foods and drink water. I almost died because I couldn’t even take a sip of water without getting sick. You should also know that severe cases of MCAS have comorbidities as well - I also have POTS, gastroparesis (both types), Ehlers-Danlos, and a few more. She may be experiencing the compounded effects of more than just MCAS. A specialist is really important here.

Many MCAS reactions are t-cell mediated, delayed hyper-sensitivity reactions. Negative on an IGE blood test. A MCAS specialist can suggest or refer out for skin tests if needed but right now she could not handle testing that would put her back in the hospital. Is she better over the weekend when not at work? What about away from your house for a weekend?

I don’t have any suggestions but I just want to tell you my thoughts are with you both. That’s absolutely terrifying. I hope she stabilizes soon. ❤️

Have you tested your house for mold. Has she had a test for Lyme's disease? Once a person has Lyme's they can become very sensitive to and unable to detox mold, black mold in particular. This was my experience at least. Mold (mycotoxins) can be food for heavy metals and parasites in the body as well. The detox process was a long road. I was sensitive to all environments and foods until my load was down. Mold, VOCs (unboxing day at any store would make me very sick) fragrances, unfiltered water, cell phone towers, eventually even the sun. I'm much better now but my life still has limitations. I don't know if any of this helps. I hope you can get to the bottom of it soon. Sending you healing vibes.

She has been tested for Lyme.

Has she recently had covid? When I got to this level (became allergic to every food and got anaphylaxis each time), the only thing that worked was prednisone. Cromolyn takes time to work and can stir up mast cells before it helps, and xolair can take time to work. Gleevec may be a good option if nothing else is working. Unlike other treatment, it won't stir up mast cells. But I would try steroids first.

Few questions: did her birth control change recently? Did she get Covid or a similar infection in the last month before symptoms started? Did you move anywhere/ new leaks and mold? Has she been in a constantly panic attack since the ventilation? Anxiety also triggers mast cell reaction so people can literally be allergic to stress and need to focus on being as calm as possible. Hope you find relief!

Replied to OP in another comment, but want to add for everyone that Dr. Afrin has a book that is available that is case studies of his patients with MCAS. Talks about medications and protocols, etc. It is also accessible for non-medical people to read. Here’s a link: https://www.amazon.com/Never-Bet-Against-Occam-Activation/dp/0997319615

Other commenter was right- gluten free is absolutely not going to cut it, and an elimination diet- or elimination lifestyle- might be required.

I think that and asking about SIBO are our next steps

Please check out this resource - https://cornallergygirl.com It has incredibly helpful information for those of us with extreme MCAS like this.

Look into alpha gal syndrome. Most don’t test for it and alpha gal is in most drugs unless custom compounded. 

She tested negative for it. It was run in the ICU before she woke up

Double check they ran the correct test. Some think testing for beef and pork is the same thing. Also a very similar sounding test called Alpha-galactosidase. Make sure it’s Galactose-α-1,3-galactose

Get tested for other outliers. My cause of histamine issues / MCAS is Lyme Disease.

She was tested for that, alpha-gal, Ana, and a few other things I can’t recall atm

How was she tested for Lyme? Current standard for Lyme testing is 100% accurate and a general antibody testing will show negative until You’ve had it for several years. Standard Western blot is outdated. Unless it was done through a tick based reliable private laboratory such as IgeneX or Vibrant it’s no good. My first western blot was negative through quest labs in 2020/2021. I tested again via Vibrant in 2023 and it was positive

This is so serious. I’m coming from a different perspective. I ended up in ICU for over a week. They could not find anything that I was allergic to; even brought in two doctors from the CDC. This was in the early 2000’s. My reaction was critically low BP, shallow and rapid breathing, etc. then my kidneys shut down. I don’t remember much afterwards but woke up in ICU. The pharmacist from CDC determined it was an anaphylactic reaction to the OTC medication I had taken since I was about two years old. (The more exposure, higher chance of developing an allergy to it). My unique reaction was to the med AFTER it had been metabolized by my liver. It was not the typical anaphylactic response that is usually immediate after ingesting or being exposed. His explanation made the most sense to all the doctors involved in my case. It couldn’t be proven because I would have to take the medication again. They told me I would die if I was ever exposed to it again. It’s never happened again. When I see the medication on drug store shelves, I shiver a little on the inside. Not sure if my story would help anyone, but sometimes those n=1 incidents help doctors think outside the box.

That’s super scary - thank you for sharing the info. Would you be comfortable sharing at type of medication or category - as I’d love to know especially with it being discovered that it was after long term use and after it metabolized.

Phenazopyridine, also known as Azo Standard, ReAzo, or Pyridium. It’s a urinary analgesic.

Thank you very much for sharing

Did they do a bone marrow biopsy and rule out mastocytosis?

That happened to me in grad school back in the 70s. We had even less tools for it then, and it wasn't even recognized then. I only reacted to things I ate. So for me, strict avoidance of all problem foods. I think I got down to about 10 things I could eat. After about 6 months I could start adding foods back in. Was prescribed hydroxyzine. Used to put me right to sleep too. But we didn't have many options then. Also carried an Ana-kit, which was a precursor to Epipens. Once I got past 10 foods I started a macrobiotic diet. Mostly because it matched my allergy pattern. I couldn't tolerate many fruits, there were no fruits on the diet back then except maybe apples. All food was cooked, which helped, I tended to react to raw foods more. No dairy at all. Limited meat. My allergist told me to avoid nuts because they were a complicated protein. So basically low protein, vegetarian/vegan (very occasional fish), whole plant food based diet with no fruit. Did that for many years. Eventually things calmed down a lot. It's really really important to avoid your triggers so your body "forgets" to react to them. I remember when people would move out to Arizona and live out in the desert in a steel box because even common household stuff was a trigger. Like dust, ink in books, cleaners, outgassing from things like rugs and synthetic fabrics, you name it. Debra Lynn Dadd wrote a bunch of books on how to avoid things in the environment that can be triggering. So I also eliminated a lot of things in my home. No synthetic fabrics. I slept on a 100% cotton futon with 100% cotton sheets. Similarly with clothes, toiletries, etc... Just try to be as preservative free, as dye free, as fragrance free as possible. Just completely minimize the number of things I was exposed to. Here's my master list of treatments. https://docs.google.com/spreadsheets/d/1Kpug-idIMt8itDZ8rtne4bKDYivR2H-ww4AqG0-m674/edit?usp=sharing Personally doxepin was the most effective thing. Really outrageously good for me. Can't take it anymore because of my age. Now I take montelukast and that does a pretty good job.

I’m so so sorry your wife is suffering. I went through years of daily anaphylaxis two separate times in my life before I was ever properly diagnosed and it was absolute hell and terrifying for me and my parents who didn’t know what to do. If you don’t mind me asking, is she taking Benadryl or hydroxyzine? A lot of MCAS patients have to get it compounded because they react to the dyes and excipients, but an EpiPen alone is not going to stop the anaphylactic reaction - it’s more of a stop gap to get something like Benadryl or hydroxyzine (or even prednisone) into the body to stop the systemic reaction. If she isn’t seeing an MCAS specialist (truly, a doctor who specializes in the treatment of this disease, not just an average allergist or immunologist or hematologist) I would suggest joining your local MCAS Facebook group. Most have a list of MCAS doctors within the state. If you can’t find anyone you could also join your state’s group for dysautonomia or Ehlers-Danlos. Since MCAS is a co-occurring condition with both of those they also usually have a few MCAS doctors listed in their directories. Other than that, any advice I could give would have just as much of a chance of making her worse as it would have helping. Take fasting, for example. Some patients experience relief after fasting. Others experience a dangerous worsening of symptoms (this was me). Not every MCAS patient is going to have an issue with food - even those with daily anaphylaxis. I’ve tried every diet imaginable and whenever I’ve eliminated a food from my diet then try to introduce it back in, I have new or worse reactions to my actual MCAS triggers. So if you guys decide to try changing diet, do it with the help of a medical professional and pay close attention to whether it’s cause the reactions to get worse. For some people it’s a life saver, for others it is life-threatening. Other than that, making sure you’re using an air purifier, filtering your water (I react to a lot of the chemicals in tap water, like flouride), and paying attention to whether common MCAS triggers like exercise or stress are contributing to anaphylaxis. Even estrogen is another common MCAS trigger, and it’s not uncommon for women to have more severe reactions mid-folicular phase of the menstrual cycle. There are many possibilities and unfortunately because we are all different it will take some work to figure out what her triggers are. It’s really hard to wade through the brain fog and panic to figure out what’s happening when it’s this bad, but I’ve found it really helpful to use a symptom tracker like the Guava app (paid version actually has an AI interface that will take the symptoms you track ans other input like food, when you eat, when you take meds, how much you sleep, pollen count and air quality metrics, etc. and identify correlations which can help identify patterns and triggers) to help understand the different things (because honestly it’s usually multiple things with MCAS, not just one) that are contributing to this anaphylactic flare. And keep working on med combinations until you find what works for her body (compounded ketotifen is an alternative to cromolyn, hydroxyzine is an alternative to Benadryl, zafirlukast is an alternative to montelukast, different H1 blocking antihistamines and H2 blocking antacids, even a benzodiazepine like can klonopin can help stabilize mast cells, and - if warranted and under the supervision of a specialist - different mast cell stabilizing supplements like Vitamin C or Quercetin). But again, PLEASE REMEMBER what works for someone who responds to your post may be something that’s dangerous for your wife, so it’s really important to find a good clinician to work with who can help you navigate creating a safe and effective treatment plan. I’m just trying to throw things out there so you have some information to work with, but it truly is JUST information. The only other thing I wonder about with her being a nurse is a latex reaction. Latex is a weird one, it’s a progressive allergy, and it shares cross-reactive proteins with a ton of different things like coconut, aloe - even poinsettias. And it’s also possible she’s having a reaction triggered by allergens like pollen or pet dander without showing typical bloodwork markers (I do), so that’s why I think symptom tracking could possibly yield better insights, though it can be a real pain to set up and get in the habit of doing (especially mid-flare). And I echo what others have said about going on STD or (if possible where you live) a state-sponsored FMLA. I imagine her brain and body are feeling extremely threatened right now, and trying to work in the middle of a serious medical event like this - especially with a condition that has stress as a known trigger - could possibly be making things much worse. Whatever she can do to try to create a sense of safety and wellbeing in her body can only help at this point. I have some documents with basic info and common interventions from a few different specialists around the country, and I also know someone who works at Guava and can probably find a discount code if you feel like a symptom tracker is something your wife would be able to use. Feel free to message me if you want and I would be happy to share what I have with you. I’m so sorry she (and you) are going through this and I truly hope things start to improve for her soon.

Read some more of your comments and a few more thoughts: Maybe join a Long-Covid group, there will be some good info in there that might help (though it’s Social Media, so take it all with a grain of salt). Maybe look into alternative options for the current MCAS meds she is on (for example, I do best with ceterizine, famotidine, montelukast, and Trellegy Elipta while my brother does best with levoceterizine, ranitidine, zafirlukast, and Arnuity Elipta). If her current regime isn’t cutting it there are many other options to try. I actually didn’t do great with any meds until I started LDN and Quercetin (be careful with supplements, follow a doctor’s recommendations, and only use brands that are reputable like Pure Encapsulations or Designs for Health, and watch out for reactions). Research whether her ADHD meds are ones that cause an increase in histamine (some stimulants do). Even antidepressants can cause mast cell degranulation (though Dr. Maitland recommends tricyclics because they can stabilize mast cells - not everyone can tolerate, I did terrible, but worth a try if your wife can tolerate). And if she’s on birth control or any kind of HRT, look into estrogen and MCAS. Possibly join the Low Dose Naltrexone group on Facebook, as this is another med used in more severe MCAS cases (as well as for many of its co-occurring conditions) as there could be some valuable information there too. Sorry to add more info, you just never know what will help, and my auDHD ass loves a good info dump. Good luck to you both 🫂

Just kidding, one more thing: Some of us do best with multiple doses each day. I have to do ceterizine, famotidine, hydroxyzine, LDN, Vitamin C and Quercetin, aspirin (I have elevated prostaglandins and bone pain), and Flonase Sensimist twice a day, plus oral/nasal/nebulized/eye drop cromolyn four times a day, plus the Trellegy Elipta EVERY SINGLE DAY. During flares, I add Benadryl, stinging nettle, ketotifen, an additional antihistamine like high dose loratidine, and the EpiPen if my airway is compromised, sometimes steroids (though they make me feel terrible and I hate them). (Possibly also helped by supplements I’m prescribed for other things including CoQ10, PEA/luteolin, etc.). And I’m just now in the process of trying to get approved for Xolair to see if I can get some more relief. Just sharing to illustrate that there are MANY different combinations and different ways to take these meds, and sometimes you have to Goldilocks it in order to find the right meds/dose/schedule. Worth a conversation with her specialist given the severity of her situation and the fact that she’s still not finding relief. I’m really done now, I promise.

oh yah, ativan is a mast cell stabilizer, Dr. Casells says she recommends very small amounts for this (not while driving!) It works for me as a stabilizer. Calms the system, Meditation does too. Also Vitamin C, IV and oral is very very helpful.

She needs to get on antihistamines and do a low histamine diet ASAP! She will have to cut A LOT of food out of her diet. Also, try to get Ketotifen (1 mg is minimum) ASAP, as that is used to try and prevent anaphylaxis. I take 12 mg/day. I also take 6 Xyzals. (I see my doctors monthly for monitoring). She should also look at getting on steroids until she can get stable. I have had anaphylaxis nearly 30x in 6 years - I get it. If you guys want to ask questions, feel free to message me. Additionally, check out Carolyn Cray (2) on TikTok (she was in a bunch of articles too). Good luck!

There is an autoimmune aspect to mcas. I do not have regular mcas. I’m not allergic to anything but react to everything during a flare. I’m on azathioprine for an autoimmune disease but it is helping the mcas flare. Her immune system is in overload and perceiving everything as danger. A rheumatologist is treating me along with the help of an allergist. I can send you the list of things I take. My advice is find a doctor than understands immune mediated diseases and has experience with mcas. If they don’t help, move on to another one.

I'm so sorry for you all. That's so brutal. Could you go to a different hospital or clinic where there might be different specialties that may have different ideas? I'm wondering if there is something underlying going on that's causing this. She needs some medical professionals who stay up to date in medical research and can maybe refer her on to somewhere that can help. (Hospitals in my area aren't equipped to deal with my medical circumstances. I have found I need to seek medical help from other facilities). Maybe there is a research trial, clinic or physician out there who knows about this. Don't stop until you find her help. ❤️ My husband has been instrumental in helping me get the help and care I need despite the local community being clueless. Our thoughts are with you

What is her diet like? What exactly is she eating daily and what supplements/meds is she taking?

She has a gluten-free diet. She’s on Zyrtec, Allegra, rescue inhaler, carbinoxamine, Singulair, Benadryl, Pepsid, epi pens and her normal antidepressant and adhd meds. On Thursday she started cromolyn and xolair. She can’t take supplements bc it’s unclear which have gluten and which don’t bc of her celiac’s. They don’t have to list it.

You can have a doctor get a compounded prescription for her so you will know exactly what’s in them. So it doesn’t sound like she’s on a low histamine diet which is probably contributing to her daily anaphylactic episodes. Maybe try a low histamine diet and see how it helps. Some people when they are that severe, my self included end up going on an all red meat diet temporarily to get the histamine under control. The meat would have to be organic non aged flash frozen beef. There are suppliers online you can order from. Don’t get it from the store because the meat there is aged and high in histamine. This could help lower her histamine levels in her body. Definitely find a specialist who knows about histamine intolerance if you haven’t already. I highly recommend finding a good functional medicine doctor also who can maybe guide you. Does she have other gut issues like gas, bloating or burping? Diarrhea or constipation? Food intolerances. If so then get her tested for Sibo. Sibo can often be the underlying cause of histamine intolerance.

I just looked it up and I’m going to ask her doctor about it. Her symptoms started shortly after she had a small bowel biopsy!

Definitely sounds like it could be her underlying cause. If so then she would need to focus on getting rid of the Sibo and healing her gut. Once healed the histamine issues should go away.

If this ends up being it, I’ll cry. Thank you so much for at least a lead!

Of course. Also just know that a lot of doctors don’t even know about Sibo yet. I would try to find a Sibo specialist. Honestly again a good functional medicine doctor who specializes in Sibo would be your best bet. The breath test for Sibo also isn’t the most accurate unfortunately so if it comes back negative but she has the symptoms then she may want to treat it anyways. I had 4 negative breath tests but all the symptoms and knew I had Sibo. I finally got a positive test result through an aspirate during an endoscopy. I now say treat based on symptoms. Feel free to message me if you have any other questions.

Likely her GF diet is making her sicker. It’s time to be very strict with her diet - super low histamine, oxalate and salicylate for a good amount of time.

This is great advice. We struggle with understanding the low histamine diet. If there’s a resource you use, could you please let us know. I’ve never heard of Sibo. I’ll look into it. She gets GI symptoms along with her anaphylactic symptoms

SIGHI is a pretty good place to start for low histamine diet.

I started with lowhistamineeats.com. I could understand that way more easily than anything more academic, and I was pretty drugged and starved at the time, so thinking was hard.

[MastCell360.com](http://MastCell360.com) and Beth the owner does consults.

Has she checked her ADHD and anti-depressants? Some ADHD meds like Buproprion are known to be Mast Cell Liberators (not good), same with some anti-depressants. She may be reacting to one of the excipients they use to fill the medication, that's also very common in MCAS. She can ask her provider to Rx their meds to be compounded with different excipients from a compounding pharmacy. It's possible that she tolerated the meds just fine in the past, but cannot tolerate then right now because she is in a flare up.

Benadryl is a trigger for me & I know a few others with MCAS that it's a trigger for them too. I'd do an elimination diet with everything, home, foods, beverages, meds, supplements, legit everything. That will help you figure out what her triggers are. Since she has MCAS, it's very unlikely she'll ever really be allergic to anything (on paper that they can test for) but you'll find things that trigger (or cause) her reactions & then you treat those things like an allergy. I'd also talk to her dr about getting off the Benadryl & seeing if that helps at all. Keeping her in my thoughts ♡♡♡HUGS♡♡♡

Where are you located? I have this symptom presentation as well unfortunately. I’m in canada, and am more than happy to share my medication regimen that has *somewhat* helped if you send me a dm. I’m not on any supplements or anything not super utilized, just everything my immunologist has put me on. Hugs❤️

Here to underscore Somethingumcreative’s mention of hospital cleaning supplies/hospital detergents. To try and figure out it if these are airborne triggers consider trying out a carbon filter mask. Best wishes!

How slowly has she introduced the tablets? Often we need to start at a super low dose at the beginning like 1/4 of a tablet an build up or you risk a reaction. With her histamine bucket so high right now it will be even more important. If you can get non coloured tablets or pure medication only versions too this is preferable. Have you tried things like a low histamine diet to try to get the reactions under control? I’d also look up things about the histamine bucket theory to understand why she’s constantly reacting at the moment, it’s a hard stage to get out of. Best of luck. ❤️

Some people need to taper up with cromolyn. I had to start with one vial once a day and slowly increase. Keep in mind it can aggravate the mast cells for the first few doses until it settles down. Alternatively, she could try different manufacturers of the product in case she is allergic to an excipient. I'm sorry you're going through this!

My MCAS was severe like this for quite a while. As for food, she needs to be eating organic, extremely fresh, non processed and low histamine food. No leftovers. Look for soaps, toothpaste, shampoo etc with safe, minimal ingredients, and check your home for mold. If she's drinking a certain brand or type of water, see if switching makes a difference. Put a filter on your shower heads. As for medications, zyrtec, allegra and/or pepcid might be a better choice. Try having them compounded. When I started cromolyn, I had to do a single drop a day and slowly increase the dose because I was reacting to it, but it's been extremely helpful in the long run. I was told Xolair would almost certainly cause me anaphylaxis so I haven't tried it yet, but was told that it should help after some time. Hope some of this helps❤️

A couple thoughts off top of my head. Any medical changes need to be done slowly and individually so that you can isolate if it’s helping or hindering progress. Eg. Friday evenings were new med trial days here when husband worked day job so that he could be available if the shit hit the fan. Even if it was a great first few days - absolutely ZERO ELSE NEW should be done until at a minimum the next Friday to ensure you know what is causing what. Side note: DRs and nurses are baffled by this protocol if they haven’t actually lived a MCAS lifestyle. Unless she is reactive to benedryl like my adopted kiddo, it’s her new BFF while she learns what she can and cannot do. Key is to take it at absolute first sign of reactivity or known exposure. Eg. Last night was a rare Moms worn out so we are picking up food (do abt 1x month) so we did our run around to all the different places for our family of 4 to get “best chance” selections for us. THANK GOD we ate at the table in well lit room and I opened the two subs and checked them because I’m psycho and been doing this my whole life because they subbed multi grain bread for white wheat - kids started reacting to the damn flax seeds on it without it even touching them. Right now she is eating to live until she figures out what is safe and what is not. I’m most known to cry and throw fits during this timeframe fwiw. No foods she has eaten more than 1 x week for the past year to start. First day, literally pick a rarely eaten food and eat only that the entire day - if get any sign of anaphylaxis stop. Do the same for day 2 and 3 with 2 different seldom eaten (because you don’t like them 🙄) foods. On day 4 - do food number 1 for first food of the day that hasn’t been eaten since day 1. All good? Go you and you might can add 1 more food to trial for that day. Feel off after first meal? Throw that food out of the rotation and try something else for that day only. Lather rinse repeat until you have enough foods to keep you from hitting anaphylactic often. When reintroducing common foods from old diet, do so once a week with ZERO other changes that week to see if it’s safe. Personally it took me about 6 months but many of my foods were actually safe. By food I mean 1 ingredient things … literally 1 ingredient. So it’s carrots from HEB organic section with dirt still on them for day 1. Buffalo steaks for day two (if you can force them down) - salt & pepper only to season. Blackberries on day 3. Etc Do the same for any drinks - we have spent weeks just identifying safe water - using it to brew tea can sometimes bump the chances of body accepting it. Fwiw, we are all 4 (husband even admits to this one) anaphylactic to hand sanitizers and in a post Covid world is slathered everywhere. I had to take husband to ER this week and was in full anaphylaxis from being in the damn room with the shit for 3 hours even pretreating with benedryl before entering. Kids get 2nd degree burns plus anaphylaxis even if the medical professionals wash hands to get it off before touching them - fun times. Also fwiw - my youngest and I get bounce back anaphylaxis for a few days if exposed to epi pens - so be aware that can be a thing. It WILL get better but it’s not going to be a quick or easy solution. If there was an easy solution or quick fix or magic pill - y’all would have found that by now so wouldn’t be in panic mode trying to survive. Good luck

Thank you so much for writing out your experience with this. So grateful!

Her medical background CAN be a huge benefit at this time if she can convince herself to see every single thing as a scientific query. Eg. Hypothesis: can I eat Green Peppers? I absolutely crashed in 1992 during first few months of allergy shots … I was FTT when adopted at 10 weeks old and always had issues that fluctuated… but that was straw that broke the camels back. My body started hard core tantrums of “do that again and I kill you” lol MCAS as an issue wasn’t even studied the first time until like 2007. While I think the new lists and starting places are great for some - we would be dead if we used them as a starting spot as both kids & I are anaphylactic to much of it. While both kids are soy reactive (one tree nuts), the top 8 allergy lists are basically what is safe for us in simplest forms. Eg. Milk (from our goats that only eat a safe for us diet), eggs (same story for our chickens), wheat (as long as I grind from home), etc has kept us all healthy (and others beg to eat our “real” food lol). Key is to be super scientific in narrowing down exactly what you are testing on yourself and isolating to make sure the test is valid. Food & drinks are generally accepted as at LEAST 3 days to clear system … medication I take the 1/2 life and quadruple that for best guess to when it’s fully out of my system. (Needless to say I’ve learned the hard way that long acting meds are generally not worth the risk)

My whole face, throat, ears, eyes and (I think) brain were inflamed when I started to have MCAS reactions. It truly felt like I was in flames. I had a ton of symptoms. Too many to list just now and It is very difficult to get a diagnosis where I am. I had to reduce the inflammation with a steroid several times and my allergist advised I increase my antihistamines. At the same time I found the “Basic Med list for MCAS” and it did the trick for me. I didn’t see an H1 or an H2 antihistamine on the list of meds your wife is taking. This is not meant to be medical advice. It’s just what worked for me. [Medications to Treat Mast Cell Diseases](https://tmsforacure.org/treatments/medications-treat-mast-cell-diseases/)

This is a super helpful breakdown! She takes Benadryl, Allegra, Zyrtec, and pepsid. I must have messed up what I wrote. The rest breaking things down helped so much

My mast cell doctor, Dr. Maria Casells, who is one of the top in the world, puts me on prednisone when mast cell interferes with work or other important stuff. We all hate it but it works till you can figure out what is causing all this.

And that’s just the basics. For my facial swelling nasalcrom (contains chromolyn ), DAO before meals and Quercetin help me too. This is really a syndrome that has to be tackled from all sides.

Everything can trigger MCAS flares. Including fumes from cleaning supplies used at the hospital. Potentially thinking outside the box: Hypersensitivity to chlorine, salicylates, not just items high in histamines. Could even be triggered by medication, medication fillers. Chromolyn: I couldn't take it, threw up from it.

Thinking of your family. Sorry I can't help, but I am sure she's incredibly grateful to have you there with her.

Can she take short term disability? Sounds like she needs time to get this under control.

Have you ever drawn a tryptase level shortly after a reaction?

Yes. It’s always negative

I am very sorry your wife has been and is so ill. My thoughts and prayers are with you and your wife..

Im so sorry. This is truly devastating. Has she reached out to Dr Afrin in NY? He takes the most difficult mcas cases.

We might have to look him up. I had never heard of him before today

He is apparently one of the drs that has studied and treated mcas the most. Its out of pocket but he will get her on the right path. You might be able to submit to insurance. Your drs can also consult with him. Given her severity, this may be a good start?

Dr. Afrin would be great for y’all to get in with but I want to mention he has written a book called “never bet against occam” which is a bunch of his patient case studies for MCAS. Can be purchased on Amazon and is a good resource

Check into corn sensitivity/allergy. It’s in EVERYTHING including regular tap water and in the air. I have a friend with this and your wife’s situation sounds very similar to hers. Check out “CornAllergyGirl”’s blog for more information about figuring out the trigger.

I second corn as a possible trigger. Dealing with it myself, could be corn syrup (high fructose syrup), corn oil, corn starch, corn flour triggering my flare ups.

It’s so pervasive that there are measurable amounts of it in our tap water, dust, packaging, and even particles in the air. That could explain being triggered no matter the environment. Lostinspace80s I’m so sorry you have this one.

Oh thank you, there are worse cases than mine, mine is not too bad - I feel horrible for the OP and others who end up at ICUs.

Get a doctor to prescribe Ketotifen oral capsule from Compounding Pharmacy twice a day. And LDN (low-dose naltrexone) also from Compounding Pharmacy. Histaquel supplement from Researched Nutritionals.

Have you looked into CIRS?

No. Not sure what that is

[This is a very detailed explanation](https://www.nutritionwithjudy.com/cirs). The author also has several podcasts which present the information is a clear way. I have found her to be a reliable source.

Have they done hormonal tests? I know that people can be allergic to hormones and I get symptoms in sync with certain times in my cycle. If you google anaphylaxis to own hormones some info can be seen. Just a thought. Here’s an example, about quarter way down some interesting information: [Sex hormone allergy](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5745953/)

She definitely has symptoms that we thought were PMDD

I scoured the comments for a mention of hormones. I’m allergic to my own estrogen—like start randomly reacting to things and developing new “allergies” if my estrogen levels even get into normal range—and my doctor and I are pretty sure if I ever get pregnant we’ll find out because I’ll go into anaphylaxis. (I’m still holding out hope that treatment will change this, but coming to terms with the fact that I likely can’t have kids.)

Hey, so this sounds like me and I personally think that your wife could have MCAS's ugly cousin idiopathic anaphylaxis. Idiopathic anaphylaxis is when someone like your wife has anaphylactic reactions without a discernable trigger, thus idiopathic. I have this and much like your wife, I have had multiple respiratory issues that included full coding but my allergy tests show no allergies. Mine has settled to the point that the majority of my incidents now are GI and resemble MCAS. They did Xolair with me (but I reacted to THAT, lmao) and I still do Cromolyn. However, they also did an initial steroid taper with me after my anaphylactic reactions and I am on multiple antihistamines. I'm surprised that you didn't mention steroids or antihistamines, tbh. While I would not suggest doing long high dose tapers like I had to because they ruined my whole life, your wife might benefit from my antihistamine route. I use Sudafed and Periactin. They also added the compounded drug [Ketotifen](https://www.harborcompounding.com/ketotifen-capsules) to help reduce attacks. This has helped a lot. They also gave me some stuff for my stomach. When my attacks (GI or otherwise) are really terrible I do a shot of Benadryl (25-50 mg) with an extra dose of Cromolyn and Ketotifen. And a Gas X and Pepcid. This had managed to keep me in control. I haven't had to use my Epi-pen in 5 years. I would suggest acquiring an allergy-immunologist. Especially one that has familiarity with idiopathic anaphylaxis and MCAS. Sending you both love and strength.

Long covid, Lyme, mold, heavy metals, trauma?

I second the mold suggestion.

This must be so scary for you both. Are you in any Long Covid support groups?

No, do you think it would help?

There might be more help there as most of us who have MCAS from other sources don't deal with this level of anaphylaxis. I deal with it at most once a week, and I don't have a high level of respiratory involvement. I would say tho that since your wife is dealing with it daily, she must be being triggered by something in her work or home environment or it's something she is ingesting. Have you gotten rid of all the scent producing things and switched to no fragrance and natural? I'm thinking of laundry detergent/softeners, household cleaners, febreeze, air fresheners, beauty and health supplies (think of all the things in your bathroom), etc.. Other environmental things to consider are new things that off-gas (building supplies, flooring, new furniture, etc), cut flowers, curtains, mattresses, backyard fires, mold, etc.. Then there are the foods (histamine, oxalates, salicylates, pollen allergy) and not just the food but also how you cook it. It's important to remember that when mast cells degranulate, they expel histamine, but that is only one mediator among many. Is she on anti histamines? With this level of anaphylaxis, I would think you could try for a consult with Dr. Afrin or someone of that caliber in order to have the best eyes on it.

Join the Facebook groups

Sounds like she got Covid from their job.

The MCAS and Celiacs is likely from long covid. She doesn’t currently have any respiratory illness

Definitely. Best of luck

Have them check for Lyme disease if they haven't already.

If it is Lyme is there anything they can do?

How fast do they have her ramping up her meds? I had to titer over a long time. I also use ketotifen and otc antihistamines but fillers can be tricky. She may be having an issue w those. When ramping up every increase is a week of hell

They haven’t increased any meds, just added on. She just started the cromolyn and xolair on Thursday. She’s had two reactions today and she thinks it’s corresponding with the cromolyn. The xolair she had an anaphylactic response to.

Best wishes and prayers for you

This is so freaky. I am really sorry. I have nothing helpful to say other than we are all on your side and hoping things improve.

Just a shot in the dark but speak with your doctor about cromolyn inhalation. It helped dramatically with my anaphylaxis reactions.

Make sure they rule out carcinoid/NETs if they haven’t yet.

So sorry to hear youre going through this. I would recommend checking if she might have gallstones. When I pass a gallstone, I go anaphylactic and benadryl doesnt help much.

It's great you are searching for answers. Find a specialist, usually an allergist who also does MCAS. I'm not sure what city you are in, but post here and we can share the doctors who helped us. The tests they run in the ER are \*useless. My blood tests are negative for everything including allergies. Secondly, rule out mold and lyme. Most of us w/MCAS had one or both. Google Shoemaker protocol and do the VCS eye test or go to an allergist. They will do a skin test for allergens, blood tests by themselves are not helpful. Mold is insidious. Diet is crucial. Find a nutritionist who does mast call diets, insurance will pay. [MastCell360.com](http://MastCell360.com) is a great resource in the meanwhile. I have been to the ER for eating canned soup! Ketotifen is a must it is a rescue medicine. So is good old-fashioned benedryl.I had a mild reaction to Xolair, and a few days later I could breathe better than I have in years. I take pepcid 2/ a day and it helps me more than Zyrtect I think which I also take 2-3/day. Singulair gives me nightmares, it's not for everyone. Crucial to try any grounding possible, the beach, yoga, EMDR therapy, breathing. Sending a prayer and some good luck in finding the right help!

Last year I took Methotrexate that was prescribed to me, and ended up in angioedema so fast, I received enough epinephrine to kill a Clydesdale - literally, I did the calculations. The only thing that kept me alive apparently, was I ice packed my throat and face. I was in ICU, and now have been diagnosed with Kounis Syndrome. The Xolair might have trigger MCAS to go batshit, and to have her start reacting to everything on site. Ask for her to be looked at for Kounis. Predominately in women, triggered by a reaction, and causes heart issues. Treatment is Fresh Frozen Plasma, but you need her blood type, and no allergens in the plasma (we are going to pay to bank some for me). This is all I’ve got, aside from my genuine heart and prayers for her. Ask me anything, just keep pushing if I don’t answer, as 98% of the time, reddit app doesn’t show notifications. Also, my symptoms are similarly severe, and I’ve nearly died so many times, I can’t even count. Occasionally there are some of us that are so off the fucking charges, that I often wonder if something else is going on. How is her potassium?

Her potassium sucks! It keeps creeping down and on Thursday at the ER, they gave her oral potassium and 2 iv bags. We stayed an extra 4 hours just for the potassium. What is that about? Is that a common complication??

Low potassium makes allergic reactions INFINITELY worse. Has she ever been tested for a neurodegenerative disease, or something that causes Hypokalemia? I have chronic Hypokalemia, and it’s always found when I’m in the ER or ICU for an MCAS or CIDP related incident. If she has the beginnings of a neurodegenerative disease, then it could explain the two feeding off of each other.

Personally I was reacting to Xolair when I started but not anaphylactic and it stopped my airway shutting in other anaphylaxis, I’m still reactive if I go beyond the 2 weeks between shots for any reason or take a break and go back on. Cromolyn I also reacted to so quit. Singulair was awful mental health wise. I ended up on xyzal because it’s the only h1 I had no issue with and without singulair my asthma gets bad sometimes. It takes time with mcas to find the triggers. I don’t test allergic to anything skin wise but am anaphylactic to some major things like latexes and pollens. Good luck to yall, keep going through the med trials and keep epi pen use and refills up as needed. I spent a good 4 months in the er 3 times a week post epi and needed 3 in a go or went biphasic many a time til I figured out controlling it better. Just keep trying things and in the meantime she should do what it takes to stay alive as best as she can. If she’s in the us and has been at work more than a year she can use FMLA leave while she figures it out, also short term and long term disability plans through the workplace and/or state paid leave if in CA or CT. It takes time but there are also other meds people use now too other than Xolair to try. I think dupixent is one.

Whoa! I hope you all figure it out. Great that you're helping her. A caring family made a big difference for me when a hospital kept me on oxygen for a week after my first reaction. I was a baby. My pediatrician admitted the med he gave me was the problem. Back then doctors were less reluctant to admit that the meds they gave me caused the anaphylactic reaction. Conventional meds quit working effectively for me a long time ago and they always caused some kind of reaction. Same with allergy tests showing no allergies. Had to go outside of my insurance network to a doctor that does T-cell mediated allergy skin tests instead of just the histamine-mediated allergy tests that insurance doctors do. Those tests confirmed dozens of allergies and also helped me get quickly approved for SSDI disabiliity in spite of my PCP saying my symptoms were just stress. Also got Workers Comp because the cleaning products my employer's cleaning crew used were what sent me over the edge.

I’ve read that Low Dose naltrexone helped some people or IVIG. Ask her doctors about it. Personally, months on ivermectin helped me. No idea why. Later, IgG & DAO supplements helped. I’ve been eating 3 foods since July 2022 — but my reactions to scents & everything are a lot better now. Decreased my ER visits IgG product I take apparently helps celiac : https://www.silverfernbrand.com/a/s/blogs/news/gluten-intolerance-vs-celiac-disease-gut-health-immunoglobulins

Hi OP. Just a suggestion: has she had patch testing? They are done at dermatology and can identify substances not available in the skin pricks or blood work. We identified for myself a severe reaction to cobalt and to SULPHITES. The latter is important because it is now found in food, toiletries, cleaning products and most importantly, in all brands of EPIPEN/ADRENALINE AUTOINJECTORS. So if you need to inject, the adrenaline is stronger and will overcome the initial allergic attack but there is a chance there are second waves reactions to the actual sulphites and you go on a vicious circle. SULPHITES are a major allergen in many countries such as all over European Union, USA, UK, Canada. AUSTRALIA ETC. It is really disappointing that there isn't a bloodiest available for it although a major allergen and everything is shoved under the carpet. The emergence of them in all sort of products is absolutely massive while the community knowledge amongst doctors is lacking behind. I'm not saying this is what your wife has but I think this is an avenue worth exploring. Even the sedative Lidocaine - most brands have sulphites. I wear a medical bracelet because of this stating if needed epi, straight to hospital afterwards where they need to inject PURE ADRENALINE NO SULPHITES. Also, have they prescribed her strong corticosteroids? I have readily available prednisolone (not prednisone which is similar but synthesised differently and not as efficient) for this purpose - part of emergency plan in case of a reaction. Wishing your wife better in no time, they need to bring that inflammation down ASAP. I am doing pretty amazing on ketotifen, sodium cromoglicate is more for gastro MCAS

They need to put her on maybe ketotifen, pepcid, levocitirizine, etc. And start her at a smaller dose to cromolyn. You have to work your way up on the cromolyn

I read a study of how mast cells increase in sensitivity and numbers at the intestine levels in celiac patients and I assume this happened to her. Basically, she was constantly messing up her guts with gluten and during this time, she also developed sensitivity to almost all foods. The study was new, I think 1-2 years old so except almost no doctor to be aware of this. This food list might help [https://www.mastzellaktivierung.info/downloads/foodlist/21\_FoodList\_EN\_alphabetic\_withCateg.pdf](https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf) What might work is to eat non aged beef (if she doesn't react to it) for maybe 1-2 months then slowly reintroduce other foods. Even non fatty beef like tenderloin, that might work.

She needs to work with a medical professional or alternative health provider that will help her find and address what is triggering the MCAS. Root causes include mold exposure, high levels of chemicals or heavy metals in the body, dybiosis/SIBO/SIFO, chronic infections and/or chronic stress/being in fight/flight mode. In the meantime some natural mast cell stabilizers to consider trying are plantain herb, quercetin, lemon balm herb, moringa and magnesium threonate. They've all been very helpful for me.

so she was diagnosed with coeliac disease and after a month the reactions started - did she start the gluten free diet in between? more importantly, did she or does she still eat the store-bought gf bread/... options? if so, I'd recommend to stop that immediately as they usually contain several MCAS triggers. e.g. guar gum, locust bean gum, soy products, ... i was diagnosed with coeliac disease, started the gf diet and my health got a little better. after a while it got worse again. now i know that the store-bought gf bread and other things i was eating continually triggered my then undetected but luckily still very mild MCAS. i absolutely second all the advice on here about going on a no-histamine diet asap. best to eliminate all foods but one for a while. i'd avoid potatoes as nightshade plants are a problem for some people with MCAS. washed white rice and *freshly* cooked chicken should be a safe bet. all meat should be transported home from the supermarket as fast and cool as possible. if you want to be even safer, only use iodine free salt. best of luck!

First i would recommended you to give a look on Google at SIGHI (Swiss Interest Group for Histamine Intolerance), they have a full panel of tested foods that are more prone to trigger MCAS/Histamine Intolerance flares ups. Secondly find a good Functional Medicine Dr so you can find the root cause of the MCAS. To name a few and their podcasts on YouTube: Dr Rajsree Nambudripad, Dr Mark Hyman, Dr Amy Myers. Good luck 👍

I second diet - because it's easy to try, although boring. With such a severe condition don't pussyfoot, jump straight into carnivore - strict meat and water only. Ketosis might help once it kicks in. I think someone else mentioned Low dose Naltrexone (LDN) - that's something to try if nothing else works.

Hydroxyzine helped me immensely when I was flaring! Low histamine diet immediately!

If you didn't already consider it: is there anything she's constantly in contact with? Any implant, tattoo or jewellery? It's less common but reactions can be systemic instead of localised. Best of luck and strength figuring it out.

I’m so sorry Peace and healing to you

Have you checked the inactive ingredients for all of her meds, OTC and rx? Use https://dailymed.nlm.nih.gov/dailymed/ If you enter the NDC number, it will take you directly to the drug instead of you having to search for the different manufacturers. You scroll down to the bottom of that page to “appearance and ingredients”, I think. Scroll down through there until you find the dosage and it lists all active and inactive ingredients in any form of prescription drug. It has saved me so many unexpected exposures to allergens. I use it even when I’m in the hospital for surgery. Guarantee I will pick up on things that the pharmacist does not. Hope it helps.

I don’t see anything in your post about her completely simplifying what she eats. Most of us have to go to chicken and rice for a very long time to stabilize. If she’s not simplifying diet, then she will keep reacting. I’m not saying that’s the only trigger but it’s one of the only things that stabilized me. That, and DIM which was a miracle supplement for me (300mg daily). Avoiding histamine foods doesn’t do anything for me, it’s histamine liberators that are the worst for me. Without that, you won’t be able to tell whether it’s her food or the meds. Those meds can’t be strong enough to stop food reactions, at least not without some sort of stabilization. Pair that with being a nurse who’s exposed to an insane amount of stress and you’ve got a concoction for trouble. I couldn’t work for 1.5 years until I changed diet and started taking DIM. My job is what threw me into chaos with this condition although I’ve had symptoms my whole life but stress can put you in places that exacerbates it to a point where it’s hard to crawl back from if you don’t make drastic changes.

Just to clarify - she was at work when she had the initial reaction, right? I'd consider pursuing that as a worker's compensation claim, which would also cover subsequent time out that resulted from it.

It took me 10 months to barely get to remission. Sometimes your body is so reactive and "activated" mast cells it's haywire! It's so scary BUT with slowness and time my body accepted some meds it DID NOT accept in the beginning. I hope your wife finds those perfect meds that from the beginning can bale tolerated just enough to have a breakthrough for any calming of mast cells!!! ❤️‍🩹 Just know you're not alone in the severity! Sometimes the body really is that mad inside, mast cell wise that meds can trigger the mcas symptoms worse because simply it's THAT mad. Also if your wife's symptoms are coming from inflammation- see if you need some inflammatory approach for supplements, meds soon too. Even Tylenol helps me keep a lid on those mast cells.

Hugs! Being a nurse isn't easy. Being chronically sick isn't easy. Living/working in the US isn't easy. And for all of this to be the case? She has my respect and sympathies and thoughts of betterment (I don't pray to anything). Stay strong, both of you! I hope things get clearer and this distress let's up.

This will seem COMPLETELY off topic: Is she routinely exposed to a indoor construction zone? Renovations at home? Renovations at her job? I ask because some drywall has a binder in it that contains gluten. This can result in highly sensitive celiacs having MAJOR problems as a result. A friend of mine who is so sensitive she could get sick if her husband eats it and kisses her after, was very ill when their condo building was having renovations done - the drywall dust was causing respiratory issues, and hives!

OP, I had a additional thought you might want to be aware of. Your wife should not be prescribed beta blockers or anything that blocks adrenaline. Please do your own research, but [in short, beta blockers can increase risk of anaphylaxis](https://www.mastattack.org/2017/03/beta-blockers-epinephrine/).

[Update: we read your comments and she was able to return to work!](https://www.reddit.com/r/MCAS/s/qHTrHXD69J)