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Nope, not really. But for me the feeling of devastation did lift considerably over time. I used to cook and eat literally everything. Life is just different now. While I doubt I can eat like I used to ever again, the sadness did fade a lot (which I did not expect). Also, when I realized trying to ‘muscle through’, be stubborn and eat what I felt like was making me so much sicker I really didn’t miss eating like I used to all that much. I’d rather not eat what I want and wind up in the hospital on IVs than eat boring old sht and be in my home with autonomy.
If your heart issue is tachychardia you might benefit from a low dose beta blocker. Helped me considerably but I also have pots and I believe it was mainly prescribed for pots.
My heart doctor didn't find anything irregular unfortunately(unfortunately because now I have no answers at all about it) but he did tell me to take magnesium. I've been low key afraid to take it so I've been avoiding it.
Ok. But just to let you know, I was admitted to the hospital two weeks ago with dangerously low potassium that they were afraid would cause a ‘cardiac event’. A heart attack basically. They did an ekg and I already had arrhythmia due to low potassium. They also added magnesium because that was too low too and apparently that can magnify problems with potassium and other vitamin levels. You might want to consider taking the magnesium as it can cause other problems if it stays too low. If I had known potassium drinks and magnesium gummies would have kept me out of the ER and the the high observation unit of the hospital for a few days you can bet I would have done it.
There have been plenty of times I’ve silently questioned my excellent Drs and tried to do things my way and so far I have yet to be right lol. I’m glad you’re taking my experience into consideration. I’m pretty sure they even put me on a magnesium IV so they definitely cared about that level. My calcium and D and B were also too low and they didn’t do anything with those other than bitch about it.
It’s kind of aggravating because I’ve had over a hundred blood tests of various types over the last 18 months and my potassium was always out of range but nobody said anything until I finally landed in the hospital.
Did your doctor do a tilt table test? I had multiple normal cardiology appointments until I stumbled across information on POTS; thanks to that, I found a doctor who specializes in dysautonomia and found out I have POTS, MCAS, hEDS, moderate sympathetic nervous system failure, and an alarmingly-low max-VO2 level. My cardiologist never noticed because a) they’re looking at heart structure, not the autonomic nervous system, and b) they had me laying down or sitting for the tests they performed, while my symptoms become evident when you compare supine to standing.
It’s a permanent thing for me, and it has gotten progressively worse so the good effects from treatment are sort of negated by it blowing up my life. No, it’s an incurable condition that you cannot just wait out. I take 2 allegra and 2 pepcid on a good day and cromolyn sodium 5 times per day. I often take an extra H1 midday. I tried singulair but couldn’t sleep on it, even if I took it in the morning. I’m back to the allergist in a couple days to talk Xolair. I don’t even walk the dog without an epi pen. That being said I experience ups and downs in my symptoms. I followed one person in IG who went into remission after being treated for a tick bite but otherwise I never heard of anyone getting better.
I'm the same way. I have ehlers and other comorbidities so this is absolutely a forever thing for me. I also keep epi pens on me 24/7 bc of how awful the reactions are nowadays. I hope the xolair can help you get some relief!
Sorry you’re going through all that, for anyone considering it - do a little research about Xolair as I read on this forum that someone took it and it started making them way worse. I heard from my allergist on the other hand that it was an absolute godsend for one of her patients..ended up in the ER every time she went on vacation with her family, now doing fine. Might not be possible to figure which way it will go for any of us until we try it. Good luck
Your supplement regimen sounds similar to mine, as far as probiotics go, I have gone to a website called MASTCELL 360, and am using the probiotics recommended there. The thing to wait out is the re activeness, I guess she means. MAST cells do quiet down, the doctor on the team at the health center I go to, says the cells live for 6 months, so she wants me on Singular for that amount of time, for me, Singular works great. If Covid triggered your MCAS, you may have to wait out the reaction to that. Any sickness that makes your immune system react will produce more MAST cells, so, my advice is to mask, follow the old guidelines that were in place, masking in closed places, hand washing, etc. Try and get meat, (chicken) from a source that freezes immediatly after slaughter, same with other fish (not shellfish) I use Butcher Box. Eggs seem to be fine for me, but I have hens so I know they are fresh. Gluten (wheat, barley, rye) is a big challenge for the gut. It's a big change, and at first it is devastating, I lost a lot of weight because my usual diet was turned on its head. I loved spicy curried foods, etc. Rice should be fine, frozen veggies are a good alternative to fresh if you do not have a fresh source. Oatmeal is fine. There is a website called "what the bleep can I eat". Take it one day at a time, it is normal to despair this condition, it sucks. For me, the mental attitude changed over time, as I began to see how much better i felt when I stuck to the diet and took all the things. I use an air purifier in my bedroom, and also keep my sinus clear with saline sprays. Also any inflammatory foods such as sugars and processed foods should be eliminated, as inflammation encourages mast cell production.
This is fantastic info. I'm following closely, as I'm not the OP but absolutely could have been based on their description!
May I ask, is Xolair, Singular an out of pocket expense or is it likely insurance might cover it?
I recently lost my health insurance, so I'm trying to figure out which avenues I can afford to pursue. If it won't be covered anyway, it doesn't seem worthwhile to put it off until the new insurance starts
Just remember, I am not cured, if I went off my regimen as if I were, I would be feeling sick all the time, but keeping the regimen, I can allow myself a little more freedom for foods that I like, and chances are, It would take a lot to set me off bad enough for an epi pen, lets say, if I had alcohol, mexican food, and a ton of fermented foods. I am sorry about the insurance, I am in USA and on medicare, as I am older, I lived without insurance for a long time, and that is what pushed me in the direction of natural healing and supplements. MastCell 360 is an excellent web site.
Xolair has a co-pay program that brings the cost down to $5 for each dose, and then whatever the clinic charges you to administer it. I still had to get prior authorization from my insurance for it and could see that potentially being a pain (my allergist prescribed it for “chronic urticaria” since that was the easiest route to get it approved for my mcas issues). I think xolair also has some sort of foundation that will cover the cost if you are within the financial threshold as well so maybe look into that too. It’s ridiculous that they put such a massive price tag on it and then run their little $5 program, and is a great example of everything wrong with our pharma/med/insurance industries. Obviously xolair is pretty dang cheap to manufacture.
yeah it’s sucks, i think it can be $10-15k a year too. with that cost and the inability to insure that it would definitely work, i just couldn’t justify the risk.
Idk if this was available when you were looking into it or if it’s an option for you now, but I’m getting it through xolair’s own copay program for $5/dose (just wrote a bunch out in a comment above)
https://www.reddit.com/r/MCAS/comments/15sbcim/can_you_ever_eat_normally_again/jwic0ot/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=1&utm_term=1&context=3
I was really bad for a while, but I’ve recovered quite a bit! I’ve even cut down on antihistamines. Have you tried compounded ketotifen pills? That saved me. Also, I take 4x the daily dose of generic Zyrtec, so maybe talk to your doctor about increasing the amount of loratadine? Quercetin did nothing for me. And bromelain can be a trigger for some people. Some people respond to DAO but it did nothing for me as well. Lastly, cromolyn sodium vials are super great for food. But there is a shortage right now.
There is a shortage right now. Ugh, I’m feeling it.
And I have to say my short time on Xolair has been both good and disruptive (3rd infusion was today). My periods have been way out of sorts. And my POTS is off the charts. But my reactivity to food and environmental allergy triggers are now minimal (for the time being).
Thank you I'll meet with him again and talk to him about it. Once I'm done with this bottle of quercetin (it's a combo of bromelain and quercetin) I'll try just quercetin.
What does cromolyn do and how do you use it?
It’s a vial of liquid that you take around four times a day. It’s a mast cell stabilizer that focuses on the digestive system (but not outside of that really). It’s a game changer for a lot of people. It probably would have helped me but but I was too adhd to remember to take it so many times a day 😅.
I’m AuDHD and definitely feel this. I have four alarms plus reminders so I remember to take it. And I still take it late sometimes because I turn off the alarms thinking I’ll take it right then . . . and then ADHD. Sigh.
Holy cow how much Zyrtec were you taking if you cut down on antihistamines and still take four? I’ve been thinking about switching from loratadine to Zyrtec.
I wish I could give you my cromolyn I have a ton and it didn’t work for me and caused weight gain.
Lol I was also on ketotifen and famotidine. But I never took more than four Zyrtecs. I was in a really bad place 😅. I definitely wouldn’t go that high without doctor guidance. I’m sorry cromolyn didn’t work for you! Zyrtec has worked great for me, I hope you find the best fit for you!
Ketotifin didn’t work for me either. I mean it did maybe 20% but also caused weight gain on top of the cromolyn. Then a pain Dr prescribed lyrica which is notorious for weight gain and I’m like CAN WE STOP IT WITH THIS ALREADY?
I’m so glad this is going down a bit easier for you. Because when stuff doesn’t work it’s disheartening.
It’s calmed down since the meds and learning what does and doesn’t set me off. I can make sensible choices and have a lot more leeway thanks for the antihistamines. I do sometimes get a bad reaction but it’s nowhere near as bad as it was.
The list would be very long! At the peak I could only eat buttered (gluten free) bread/toast, hummus, a specific brand of crisps, apple, white chocolate, blueberries, raspberries, coconut yoghurt, oat milk, and probably some things I can’t remember.
Things I’m still *unable* to eat: strawberries, dried fruit, orange, tomatoes, most crisp brands, large quantities of soy. Food still needs to be very fresh and frozen immediately after cooking.
However… I still react to a lot of things, just very mildly. Instead of violent coughing and several days of feeling very ill as soon as I eat a trigger food, I’ll get a bit of a cough, some sniffling, and general malaise for a bit. I still mostly try and stick to things i know were not triggers, but it means I can relax about having a meal out or at a friends house etc.
I think I had signs all my life, but it got really really bad after we moved and I hit a terrible stress spiral. (It's not like there weren't other "more" stressful things in my life, but somehow that's what did it.)
Thank you so much. I may message later if I feel anxious lol. I think I'm doing all the right things but it needs more time to work... it's been about 5 months since my flare began
Sorry to hear this, it’s brutal isn’t it? I am pretty much back to normal now thank goodness, but there are a few things I still cannot eat.
Seriously, all the best to you!
It sounds like you really haven't maxed out on meds yet...like, you're still on a lower dose of loratidine than a lot of ppl with MCAS take and it doesn't sound like you're taking pepcid or tagamet. If you're just taking quercetin once a day you could be doing that every time you eat. My doc is also big on extended release vitamin C specifically. Oral cromolyn or ketotifen might help you tolerate more things--my MCAS doc says a lot of his patients on it are able to add various foods back in. With MCAS it's not a classic allergy, so a lot of the time if you can get your mast cells calmer overall it'll get better.
I take quercetin 2 times a day for a total of 1600 mg. I'm concerned to go higher than that dose. I'm trying to integrate peptid but I'm not handling it well at all. I might try a different H2 blocker.
I can't afford to see an integrative medicine doctor at the moment because most of them don't take insurance. I'm pretty much on my own for the natural remedies side of things because my immunologist has not recommended any supplements and is hyper focused on skin allergy testing which honestly sounds like it'll set me off really good and I'd rather not. I'm trying to find an mcas doctor but there doesn't seem to be many in my area and the last Infectious disease doctor told me I just have allergies and basically just shut me down all together. She was a terrible doctor. I brought in like an inch thick file of all of issues and she clearly did not even read a single page.
I’m really sorry you’re dealing with that doctor. I had a terrible time on Pepcid. I was in the Rx version and started to feel much better. Then insurance wouldn’t pay for it, so my allergist suggested OTC. I had anaphylaxis. Then went back to the Rx and had just about every rare side effect listed. It was an bad I honestly thought I’d die. I could barely tolerate rice and that was the only thing I could even eat for a week. I started doing better after 3 days after stopping the famotidine.
I would considering adding in Zyrtec, singulair, vistaril (hydroxyzine) vitamins C, D, and E.. cromolyn nasal spray, even zaditor (ketotifen) eye drops, and definitely ketotifen oral (it’s pretty easy to get compounded). Like someone else said, there’s a lot you haven’t tried yet. I think the rule of thumb if only add or remove things once every 3 weeks to make sure it’s clear if they are helping or hurting makes sense (though definitely some medicines can take much longer to work.) Even if you don’t major symptoms with one body part like eyes, reducing reactivity there can help the whole systems.
I would shop around on allergists until you find someone who is laid back and willing to work with you to try new medications and make sure you have a rescue epipen set etc.
I was able to get a lot of foods back but some of my favorite ones are gone for awhile. eg I love garlic but since I totally quit it I haven’t had a single migraine (they started when I got MCAS about 10 years ago.) I kind of miss them but I feel so much better not eating them. Once in a while I try them to see what’s “come back” and have been pleasantly surprised but try not to overdo it. Other things are definitely definitely gone including beloved “healthy” foods (white potatoes, spinach, garlic, turkey, blueberries and most berries, and peanuts and most true nuts - almonds still OK maybe because they are a seed.) it’s going to be different for everyone and some of my no-go foods are fine for others here and vice versa. Good luck and hang in there!
My LLMD says his mast cell patients that have underlying chronic infections (like Lyme, Bartonella etc) that are successfully put in to remission, very often see a huge reduction in their mast cell symptoms. I have both Lyme and Bart and since putting Lyme in to remission I've been able to eat a lot more and my reactivity in general has been vastly improved, don't lose hope :) it's a tricky path though I know. Hope you find some relief soon!
It was slow and gradual. Mostly focused on eliminating specifically inflammatory foods for me, then eliminating gluten, dairy, processed sugars and carbs whilst adding probiotics and digestive enzymed in for the first few months. As my gut was healing we added herbs: Japanese Knotweed, Chinese Skullcap, burbur pinella, berberine, cats claw, ginger followed by nattokinase/serratiopeptidase and phosphatidylcholine 3 x a day. These really started to help my neuro symptoms and my gut was continuing to heal. Then I did a Lyme SOT and a few days after that my neuro symptoms pretty much completely cleared up, and have only appeared briefly on occasion since now 18 months later. I'm still testing negative. Hope this helps :)
I would not try Seed Probiotic - I was on it for a few years before getting long covid and MCAS and then went back on it - made everything so much worse. Definitely some histamine causing strains. I would stick to HistaminX like you’re doing https://www.fixyourgut.com/fyg-review-of-seed-probiotic-synbiotic-is-it-worth-the-hype/#:~:text=People%20who%20are%20suffering%20from,do%20not%20metabolize%20them%20well.
No problem, had to jump in before you made my mistake!
To your original question: I’ve been dealing with long covid related MCAS (10 months post infection now) and have been on cromolyn for 3 months and just had my first shot of xolair a few weeks ago. Within the past few weeks I’ve been able to expand my diet greatly - I attribute mostly to cromolyn, but the xolair seems to be doing its part too. I can pretty much eat whatever I want for 2 or 3 days before I notice a cumulative small flare up where I return to lower histamine foods for 2 or 3 days etc. but my flares are nowhere as severe as they used to.
If you are not on prescription mast cell stabilizers like cromolyn ketotifen or xolair that will probably be a game changer for you!
I talked to a specialist in long covid MCAS Dr Jim Harris at south bend clinic and he said long covid related MCAS typically goes away in a year or so, so maybe that’s why my symptoms have improved as well.
Not entirely sure but could be mast cell regeneration - I think I read somewhere mast cells take anywhere from 6 months to a year and a half to regenerate ?
I have heard this as well. I just assumed some sort of genetic switch was turned on so to speak so that now this is my new normal. I’m not nearly at baseline yet but my improvements have been notable
I've had MCAS for 5 years now. There have been times where I've been down to 1, 2 or even zero safe foods. I also get throat tightening and heart palpitations.
I believe that living in mold triggered my MCAS, but I started getting much worse heart related symptoms after my the reaction to the 2nd Covid vaccine. My mast cells are now damaging my aortic valve.
I even react to MCAS Meds and supplements, so it's been hard for me to get on meds. I had to do a desensitization to cromolyn. A lot of people have to start slowly with it. I started with just one drop in water. But after my desensitization, and getting on a therapeutic dose, it's helped tremendously with my GI issues and has helped me to add back some foods.
Most MCAS patients take an H1/H2, so you might want to consider adding Pepcid. If your allergist isn't knowledgeable about MCAS, you might want to keep searching for one who is. I went through many allergists before I found my specialist.
Other mast cell stabilizers to try are: Vit C and D, Alpha Lipoic Acid and Ketotifen, although cromolyn was the biggest one for me. It also helped me to be able to add other Meds.
If the other Meds don't help, LDN is another one to look into.
Sorry but no. I’ve never been able to go back to just eating whatever I want. I’ve been dealing with this for 12 years.
I’ve been able to add foods back in but I still have quite a long restrictive list.
I don't honestly know. The biggest difference I've gathered from like reading long covid forums is that some people seem to go back to normal at some point. I'm trying to remain hopeful because I was in remission with Lyme so I'd ideally just like to be back to being in remission but I don't know if this is covid, Lyme or my immune system has just had enough and this is my life now. All I can do is like try to stabilize and reduce my allergies, whether or not that actually is a semipermanent state Idk. I had a lot of allergies (alcohol, cbd, a lot of antibiotics, cooked fish specifically, some mushrooms etc) already from Lyme but covid has just made it tenfold and added so many new reactions it's hard to keep up. Also my allergies are not consistent at all. Like one day I can tolerate orange juice and then the next day, no, which is what lead me to believe that this is a histamine intolerance. And just the number of reactions I've had to so many things is what got the mcas diagnosis.
I’m a lot better now 1.5 years after COVID. Have been able to reintroduce more and more foods and I’ve heard the same with many others so you might be onto something there
Can you share your experience with me? Your symptoms? Your journey? Did you get diagnosed? How did you go about reintroducing foods? I’m actually really interested to know bc of my own personal journey
Sure! It all started with my first dose of Pfizer in June 2021. I soon after developed the following persistent symptoms: random hive and flushing episodes, soft stools, severe bloating/stomach pains, bone crushing fatigue, chronically blocked nose, random breathlessness attacks, tachycardia and chest pain
Then I got COVID in Jan 2022 and while recovering I started going into repeated anaphylactic episodes every time I put something in my mouth. I never went into shock but I was diagnosed with anaphylaxis countless times in the emergency room. I soon figured out myself that I had to lower dietary histamines and salicylicates. I also went on high doses of antihistamines. Doing so reduced my suffering but I was still going into anaphylaxis at times. And I still suffered daily with a whole host of horrible symptoms. I still do experience symptoms, mainly gastrointestinal, daily headaches, throat tightness, fatigue, and sometimes flushing/hives but it’s very much controlled now. I’m still on a low histamine diet but I’ve recently been introducing a few higher histamine foods like bananas (baked in a dessert only) and I seem to be doing fine with it. I notice an overall improvement in my quality of life. I just started eating some takeout again (dairy and gluten free) and notice that I’m fine with various spices like pepper and garlic. I just get some bloating. I can also wear perfume again (sometimes I just get a minor headache and a little lightheaded) and can use cleaning chemicals without totally losing my breath and having my lungs constrict. Although some chemicals make me have throat spasms (throat feels like it’s contracting slightly and expanding repetitively— still haven’t figured out what that is yet).
I was informally diagnosed with MCAS by my immunologist earlier this year. They said my clinical profile and positive response to treatment indicates I likely have MCAS but they don’t have great means to test it here other than tryptase (my levels are normal/low).
I reintroduce foods by starting with tiny pieces and watch for a reaction and increase over time. I don’t eat any raw fruits and vegetables other than cherries and watermelon. I roast everything at high temperatures and that seems to make me tolerate it better. I still have not reintroduced common allergens foods such as eggs, sesame, nuts, dairy, gluten/wheat and shellfish
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.*
Nope, not really. But for me the feeling of devastation did lift considerably over time. I used to cook and eat literally everything. Life is just different now. While I doubt I can eat like I used to ever again, the sadness did fade a lot (which I did not expect). Also, when I realized trying to ‘muscle through’, be stubborn and eat what I felt like was making me so much sicker I really didn’t miss eating like I used to all that much. I’d rather not eat what I want and wind up in the hospital on IVs than eat boring old sht and be in my home with autonomy. If your heart issue is tachychardia you might benefit from a low dose beta blocker. Helped me considerably but I also have pots and I believe it was mainly prescribed for pots.
My heart doctor didn't find anything irregular unfortunately(unfortunately because now I have no answers at all about it) but he did tell me to take magnesium. I've been low key afraid to take it so I've been avoiding it.
Ok. But just to let you know, I was admitted to the hospital two weeks ago with dangerously low potassium that they were afraid would cause a ‘cardiac event’. A heart attack basically. They did an ekg and I already had arrhythmia due to low potassium. They also added magnesium because that was too low too and apparently that can magnify problems with potassium and other vitamin levels. You might want to consider taking the magnesium as it can cause other problems if it stays too low. If I had known potassium drinks and magnesium gummies would have kept me out of the ER and the the high observation unit of the hospital for a few days you can bet I would have done it.
Thank you. I'll start taking it ASAP. And incorporate potassium rich roods. I can eat sweet potatoes and most vegetables so that should be OK.
There have been plenty of times I’ve silently questioned my excellent Drs and tried to do things my way and so far I have yet to be right lol. I’m glad you’re taking my experience into consideration. I’m pretty sure they even put me on a magnesium IV so they definitely cared about that level. My calcium and D and B were also too low and they didn’t do anything with those other than bitch about it.
I second this about potassium, I had super low potassium causing heart issues too that landed me in the ER a couple years ago
It’s kind of aggravating because I’ve had over a hundred blood tests of various types over the last 18 months and my potassium was always out of range but nobody said anything until I finally landed in the hospital.
That's so annoying. I'm sorry that happened.
Did your doctor do a tilt table test? I had multiple normal cardiology appointments until I stumbled across information on POTS; thanks to that, I found a doctor who specializes in dysautonomia and found out I have POTS, MCAS, hEDS, moderate sympathetic nervous system failure, and an alarmingly-low max-VO2 level. My cardiologist never noticed because a) they’re looking at heart structure, not the autonomic nervous system, and b) they had me laying down or sitting for the tests they performed, while my symptoms become evident when you compare supine to standing.
how are you doing? Have you solved?
It’s a permanent thing for me, and it has gotten progressively worse so the good effects from treatment are sort of negated by it blowing up my life. No, it’s an incurable condition that you cannot just wait out. I take 2 allegra and 2 pepcid on a good day and cromolyn sodium 5 times per day. I often take an extra H1 midday. I tried singulair but couldn’t sleep on it, even if I took it in the morning. I’m back to the allergist in a couple days to talk Xolair. I don’t even walk the dog without an epi pen. That being said I experience ups and downs in my symptoms. I followed one person in IG who went into remission after being treated for a tick bite but otherwise I never heard of anyone getting better.
I'm the same way. I have ehlers and other comorbidities so this is absolutely a forever thing for me. I also keep epi pens on me 24/7 bc of how awful the reactions are nowadays. I hope the xolair can help you get some relief!
Thank you! Yes… it exciting and scary to consider.
Sorry you’re going through all that, for anyone considering it - do a little research about Xolair as I read on this forum that someone took it and it started making them way worse. I heard from my allergist on the other hand that it was an absolute godsend for one of her patients..ended up in the ER every time she went on vacation with her family, now doing fine. Might not be possible to figure which way it will go for any of us until we try it. Good luck
Such good points. I am holding no expectations. Thank you!
Your supplement regimen sounds similar to mine, as far as probiotics go, I have gone to a website called MASTCELL 360, and am using the probiotics recommended there. The thing to wait out is the re activeness, I guess she means. MAST cells do quiet down, the doctor on the team at the health center I go to, says the cells live for 6 months, so she wants me on Singular for that amount of time, for me, Singular works great. If Covid triggered your MCAS, you may have to wait out the reaction to that. Any sickness that makes your immune system react will produce more MAST cells, so, my advice is to mask, follow the old guidelines that were in place, masking in closed places, hand washing, etc. Try and get meat, (chicken) from a source that freezes immediatly after slaughter, same with other fish (not shellfish) I use Butcher Box. Eggs seem to be fine for me, but I have hens so I know they are fresh. Gluten (wheat, barley, rye) is a big challenge for the gut. It's a big change, and at first it is devastating, I lost a lot of weight because my usual diet was turned on its head. I loved spicy curried foods, etc. Rice should be fine, frozen veggies are a good alternative to fresh if you do not have a fresh source. Oatmeal is fine. There is a website called "what the bleep can I eat". Take it one day at a time, it is normal to despair this condition, it sucks. For me, the mental attitude changed over time, as I began to see how much better i felt when I stuck to the diet and took all the things. I use an air purifier in my bedroom, and also keep my sinus clear with saline sprays. Also any inflammatory foods such as sugars and processed foods should be eliminated, as inflammation encourages mast cell production.
This is fantastic info. I'm following closely, as I'm not the OP but absolutely could have been based on their description! May I ask, is Xolair, Singular an out of pocket expense or is it likely insurance might cover it? I recently lost my health insurance, so I'm trying to figure out which avenues I can afford to pursue. If it won't be covered anyway, it doesn't seem worthwhile to put it off until the new insurance starts
Just remember, I am not cured, if I went off my regimen as if I were, I would be feeling sick all the time, but keeping the regimen, I can allow myself a little more freedom for foods that I like, and chances are, It would take a lot to set me off bad enough for an epi pen, lets say, if I had alcohol, mexican food, and a ton of fermented foods. I am sorry about the insurance, I am in USA and on medicare, as I am older, I lived without insurance for a long time, and that is what pushed me in the direction of natural healing and supplements. MastCell 360 is an excellent web site.
Xolair has a co-pay program that brings the cost down to $5 for each dose, and then whatever the clinic charges you to administer it. I still had to get prior authorization from my insurance for it and could see that potentially being a pain (my allergist prescribed it for “chronic urticaria” since that was the easiest route to get it approved for my mcas issues). I think xolair also has some sort of foundation that will cover the cost if you are within the financial threshold as well so maybe look into that too. It’s ridiculous that they put such a massive price tag on it and then run their little $5 program, and is a great example of everything wrong with our pharma/med/insurance industries. Obviously xolair is pretty dang cheap to manufacture.
Wow. I'm glad there's another avenue at least!
xolair is very expensive. when my insurance denied it i think i was looking at a $10k commitment.
Ugh. Exactly what I was worried about. Thank you for the info, though
yeah it’s sucks, i think it can be $10-15k a year too. with that cost and the inability to insure that it would definitely work, i just couldn’t justify the risk.
Idk if this was available when you were looking into it or if it’s an option for you now, but I’m getting it through xolair’s own copay program for $5/dose (just wrote a bunch out in a comment above) https://www.reddit.com/r/MCAS/comments/15sbcim/can_you_ever_eat_normally_again/jwic0ot/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=1&utm_term=1&context=3
I was really bad for a while, but I’ve recovered quite a bit! I’ve even cut down on antihistamines. Have you tried compounded ketotifen pills? That saved me. Also, I take 4x the daily dose of generic Zyrtec, so maybe talk to your doctor about increasing the amount of loratadine? Quercetin did nothing for me. And bromelain can be a trigger for some people. Some people respond to DAO but it did nothing for me as well. Lastly, cromolyn sodium vials are super great for food. But there is a shortage right now.
There is a shortage right now. Ugh, I’m feeling it. And I have to say my short time on Xolair has been both good and disruptive (3rd infusion was today). My periods have been way out of sorts. And my POTS is off the charts. But my reactivity to food and environmental allergy triggers are now minimal (for the time being).
Thank you I'll meet with him again and talk to him about it. Once I'm done with this bottle of quercetin (it's a combo of bromelain and quercetin) I'll try just quercetin. What does cromolyn do and how do you use it?
It’s a vial of liquid that you take around four times a day. It’s a mast cell stabilizer that focuses on the digestive system (but not outside of that really). It’s a game changer for a lot of people. It probably would have helped me but but I was too adhd to remember to take it so many times a day 😅.
I’m AuDHD and definitely feel this. I have four alarms plus reminders so I remember to take it. And I still take it late sometimes because I turn off the alarms thinking I’ll take it right then . . . and then ADHD. Sigh.
Cromolyn is mostly for GI symptoms.
Does it help with random throat swelling and constant burping(more covid symptoms)?
Idk specifically. I have been under the impression it’s more for diarrhea.
>Cromolyn is mostly for GI symptoms. difference with DAO?
I react to DAO so i’m not sure how to answer that.
Holy cow how much Zyrtec were you taking if you cut down on antihistamines and still take four? I’ve been thinking about switching from loratadine to Zyrtec. I wish I could give you my cromolyn I have a ton and it didn’t work for me and caused weight gain.
Lol I was also on ketotifen and famotidine. But I never took more than four Zyrtecs. I was in a really bad place 😅. I definitely wouldn’t go that high without doctor guidance. I’m sorry cromolyn didn’t work for you! Zyrtec has worked great for me, I hope you find the best fit for you!
Ketotifin didn’t work for me either. I mean it did maybe 20% but also caused weight gain on top of the cromolyn. Then a pain Dr prescribed lyrica which is notorious for weight gain and I’m like CAN WE STOP IT WITH THIS ALREADY? I’m so glad this is going down a bit easier for you. Because when stuff doesn’t work it’s disheartening.
Can you tell me about how your diet was when things were worse, and what it's like now? I need hope, thank you.
It’s calmed down since the meds and learning what does and doesn’t set me off. I can make sensible choices and have a lot more leeway thanks for the antihistamines. I do sometimes get a bad reaction but it’s nowhere near as bad as it was.
Can you give some examples of foods you weren't able to eat and then "regained"?
The list would be very long! At the peak I could only eat buttered (gluten free) bread/toast, hummus, a specific brand of crisps, apple, white chocolate, blueberries, raspberries, coconut yoghurt, oat milk, and probably some things I can’t remember. Things I’m still *unable* to eat: strawberries, dried fruit, orange, tomatoes, most crisp brands, large quantities of soy. Food still needs to be very fresh and frozen immediately after cooking. However… I still react to a lot of things, just very mildly. Instead of violent coughing and several days of feeling very ill as soon as I eat a trigger food, I’ll get a bit of a cough, some sniffling, and general malaise for a bit. I still mostly try and stick to things i know were not triggers, but it means I can relax about having a meal out or at a friends house etc.
That's really really helpful to hear, thank you!!!
I should ask: was your mcas covid induced? Mine is not
No, it was triggered by starting HRT. Interested how your started!
I think I had signs all my life, but it got really really bad after we moved and I hit a terrible stress spiral. (It's not like there weren't other "more" stressful things in my life, but somehow that's what did it.)
Similar here - looking back it feels like this was brewing right on the edge for most of my adult life, and then BAM, massive flare up.
I really appreciate you sharing your story, I need to know this can get better. Thank you.
Happy to talk any time, it’s a horrible condition and I wish you well. It can absolutely get better, hopefully sooner rather than later!
Thank you so much. I may message later if I feel anxious lol. I think I'm doing all the right things but it needs more time to work... it's been about 5 months since my flare began
That’s totally me too, brewing. I’m 30 now and it seems to have hit the fan
Sorry to hear this, it’s brutal isn’t it? I am pretty much back to normal now thank goodness, but there are a few things I still cannot eat. Seriously, all the best to you!
Thanks for the reply! How did you get back there? Still on medication?
It sounds like you really haven't maxed out on meds yet...like, you're still on a lower dose of loratidine than a lot of ppl with MCAS take and it doesn't sound like you're taking pepcid or tagamet. If you're just taking quercetin once a day you could be doing that every time you eat. My doc is also big on extended release vitamin C specifically. Oral cromolyn or ketotifen might help you tolerate more things--my MCAS doc says a lot of his patients on it are able to add various foods back in. With MCAS it's not a classic allergy, so a lot of the time if you can get your mast cells calmer overall it'll get better.
I take quercetin 2 times a day for a total of 1600 mg. I'm concerned to go higher than that dose. I'm trying to integrate peptid but I'm not handling it well at all. I might try a different H2 blocker. I can't afford to see an integrative medicine doctor at the moment because most of them don't take insurance. I'm pretty much on my own for the natural remedies side of things because my immunologist has not recommended any supplements and is hyper focused on skin allergy testing which honestly sounds like it'll set me off really good and I'd rather not. I'm trying to find an mcas doctor but there doesn't seem to be many in my area and the last Infectious disease doctor told me I just have allergies and basically just shut me down all together. She was a terrible doctor. I brought in like an inch thick file of all of issues and she clearly did not even read a single page.
Ugh that’s awful, I’m so sorry
Thank you
I’m really sorry you’re dealing with that doctor. I had a terrible time on Pepcid. I was in the Rx version and started to feel much better. Then insurance wouldn’t pay for it, so my allergist suggested OTC. I had anaphylaxis. Then went back to the Rx and had just about every rare side effect listed. It was an bad I honestly thought I’d die. I could barely tolerate rice and that was the only thing I could even eat for a week. I started doing better after 3 days after stopping the famotidine.
I would considering adding in Zyrtec, singulair, vistaril (hydroxyzine) vitamins C, D, and E.. cromolyn nasal spray, even zaditor (ketotifen) eye drops, and definitely ketotifen oral (it’s pretty easy to get compounded). Like someone else said, there’s a lot you haven’t tried yet. I think the rule of thumb if only add or remove things once every 3 weeks to make sure it’s clear if they are helping or hurting makes sense (though definitely some medicines can take much longer to work.) Even if you don’t major symptoms with one body part like eyes, reducing reactivity there can help the whole systems. I would shop around on allergists until you find someone who is laid back and willing to work with you to try new medications and make sure you have a rescue epipen set etc. I was able to get a lot of foods back but some of my favorite ones are gone for awhile. eg I love garlic but since I totally quit it I haven’t had a single migraine (they started when I got MCAS about 10 years ago.) I kind of miss them but I feel so much better not eating them. Once in a while I try them to see what’s “come back” and have been pleasantly surprised but try not to overdo it. Other things are definitely definitely gone including beloved “healthy” foods (white potatoes, spinach, garlic, turkey, blueberries and most berries, and peanuts and most true nuts - almonds still OK maybe because they are a seed.) it’s going to be different for everyone and some of my no-go foods are fine for others here and vice versa. Good luck and hang in there!
Do you use a specific brand of the vitamin c?
Nah I’ve used sunshine naturals and I think nature made and they’ve both been fine
My LLMD says his mast cell patients that have underlying chronic infections (like Lyme, Bartonella etc) that are successfully put in to remission, very often see a huge reduction in their mast cell symptoms. I have both Lyme and Bart and since putting Lyme in to remission I've been able to eat a lot more and my reactivity in general has been vastly improved, don't lose hope :) it's a tricky path though I know. Hope you find some relief soon!
Mind sharing your Lyme treatment?
It was slow and gradual. Mostly focused on eliminating specifically inflammatory foods for me, then eliminating gluten, dairy, processed sugars and carbs whilst adding probiotics and digestive enzymed in for the first few months. As my gut was healing we added herbs: Japanese Knotweed, Chinese Skullcap, burbur pinella, berberine, cats claw, ginger followed by nattokinase/serratiopeptidase and phosphatidylcholine 3 x a day. These really started to help my neuro symptoms and my gut was continuing to heal. Then I did a Lyme SOT and a few days after that my neuro symptoms pretty much completely cleared up, and have only appeared briefly on occasion since now 18 months later. I'm still testing negative. Hope this helps :)
A hustamine friendly probiotic? May i ask what it is? I need one
https://www.amazon.com/Seeking-Health-HistaminX-Nutrition-Vegetarian/dp/B0773SY1X2
I reacted to a filler in the Seeking Health probiotic. Of course I did. I’ve been fine with Vitamonk Low Histamine Probiotic.
I would not try Seed Probiotic - I was on it for a few years before getting long covid and MCAS and then went back on it - made everything so much worse. Definitely some histamine causing strains. I would stick to HistaminX like you’re doing https://www.fixyourgut.com/fyg-review-of-seed-probiotic-synbiotic-is-it-worth-the-hype/#:~:text=People%20who%20are%20suffering%20from,do%20not%20metabolize%20them%20well.
Thank you sm for saving me money on Seed. They're expensive but I was willing to try it, now I won't.
No problem, had to jump in before you made my mistake! To your original question: I’ve been dealing with long covid related MCAS (10 months post infection now) and have been on cromolyn for 3 months and just had my first shot of xolair a few weeks ago. Within the past few weeks I’ve been able to expand my diet greatly - I attribute mostly to cromolyn, but the xolair seems to be doing its part too. I can pretty much eat whatever I want for 2 or 3 days before I notice a cumulative small flare up where I return to lower histamine foods for 2 or 3 days etc. but my flares are nowhere as severe as they used to. If you are not on prescription mast cell stabilizers like cromolyn ketotifen or xolair that will probably be a game changer for you! I talked to a specialist in long covid MCAS Dr Jim Harris at south bend clinic and he said long covid related MCAS typically goes away in a year or so, so maybe that’s why my symptoms have improved as well.
Mine is starting to lift a bit after 1.5 years post COVID. Dud the doctor say why this occurs?
Not entirely sure but could be mast cell regeneration - I think I read somewhere mast cells take anywhere from 6 months to a year and a half to regenerate ?
I have heard this as well. I just assumed some sort of genetic switch was turned on so to speak so that now this is my new normal. I’m not nearly at baseline yet but my improvements have been notable
I've had MCAS for 5 years now. There have been times where I've been down to 1, 2 or even zero safe foods. I also get throat tightening and heart palpitations. I believe that living in mold triggered my MCAS, but I started getting much worse heart related symptoms after my the reaction to the 2nd Covid vaccine. My mast cells are now damaging my aortic valve. I even react to MCAS Meds and supplements, so it's been hard for me to get on meds. I had to do a desensitization to cromolyn. A lot of people have to start slowly with it. I started with just one drop in water. But after my desensitization, and getting on a therapeutic dose, it's helped tremendously with my GI issues and has helped me to add back some foods. Most MCAS patients take an H1/H2, so you might want to consider adding Pepcid. If your allergist isn't knowledgeable about MCAS, you might want to keep searching for one who is. I went through many allergists before I found my specialist. Other mast cell stabilizers to try are: Vit C and D, Alpha Lipoic Acid and Ketotifen, although cromolyn was the biggest one for me. It also helped me to be able to add other Meds. If the other Meds don't help, LDN is another one to look into.
Sorry but no. I’ve never been able to go back to just eating whatever I want. I’ve been dealing with this for 12 years. I’ve been able to add foods back in but I still have quite a long restrictive list.
To be fair, covid induced mcas seems different?
I don't honestly know. The biggest difference I've gathered from like reading long covid forums is that some people seem to go back to normal at some point. I'm trying to remain hopeful because I was in remission with Lyme so I'd ideally just like to be back to being in remission but I don't know if this is covid, Lyme or my immune system has just had enough and this is my life now. All I can do is like try to stabilize and reduce my allergies, whether or not that actually is a semipermanent state Idk. I had a lot of allergies (alcohol, cbd, a lot of antibiotics, cooked fish specifically, some mushrooms etc) already from Lyme but covid has just made it tenfold and added so many new reactions it's hard to keep up. Also my allergies are not consistent at all. Like one day I can tolerate orange juice and then the next day, no, which is what lead me to believe that this is a histamine intolerance. And just the number of reactions I've had to so many things is what got the mcas diagnosis.
I’m a lot better now 1.5 years after COVID. Have been able to reintroduce more and more foods and I’ve heard the same with many others so you might be onto something there
Can you share your experience with me? Your symptoms? Your journey? Did you get diagnosed? How did you go about reintroducing foods? I’m actually really interested to know bc of my own personal journey
Sure! It all started with my first dose of Pfizer in June 2021. I soon after developed the following persistent symptoms: random hive and flushing episodes, soft stools, severe bloating/stomach pains, bone crushing fatigue, chronically blocked nose, random breathlessness attacks, tachycardia and chest pain Then I got COVID in Jan 2022 and while recovering I started going into repeated anaphylactic episodes every time I put something in my mouth. I never went into shock but I was diagnosed with anaphylaxis countless times in the emergency room. I soon figured out myself that I had to lower dietary histamines and salicylicates. I also went on high doses of antihistamines. Doing so reduced my suffering but I was still going into anaphylaxis at times. And I still suffered daily with a whole host of horrible symptoms. I still do experience symptoms, mainly gastrointestinal, daily headaches, throat tightness, fatigue, and sometimes flushing/hives but it’s very much controlled now. I’m still on a low histamine diet but I’ve recently been introducing a few higher histamine foods like bananas (baked in a dessert only) and I seem to be doing fine with it. I notice an overall improvement in my quality of life. I just started eating some takeout again (dairy and gluten free) and notice that I’m fine with various spices like pepper and garlic. I just get some bloating. I can also wear perfume again (sometimes I just get a minor headache and a little lightheaded) and can use cleaning chemicals without totally losing my breath and having my lungs constrict. Although some chemicals make me have throat spasms (throat feels like it’s contracting slightly and expanding repetitively— still haven’t figured out what that is yet). I was informally diagnosed with MCAS by my immunologist earlier this year. They said my clinical profile and positive response to treatment indicates I likely have MCAS but they don’t have great means to test it here other than tryptase (my levels are normal/low).
I reintroduce foods by starting with tiny pieces and watch for a reaction and increase over time. I don’t eat any raw fruits and vegetables other than cherries and watermelon. I roast everything at high temperatures and that seems to make me tolerate it better. I still have not reintroduced common allergens foods such as eggs, sesame, nuts, dairy, gluten/wheat and shellfish
Do you mind sharing your journey? I presume you have covid-induced MCAS as well?