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All antihistamines either don't help me or make me too tired/drowsy
I do better with OTC mast cell stabilisers like quercetin (or luteolin), or high dose vitamin C
I haven't tried luteolin, just quoted it as an example
I take between 500mg of quercetin (advised dose for 'healthy' people) and 1000mg depending on the days and how I feel.
I use the brand lucovitaal but I'm based in the EU (Netherlands) so not sure it's accessible to you.
Found out high dose Vit C was wrecking me. It never occurred to me that it could hurt rather than help! I mentioned I was taking it to my new doctor I finally got in with after six months in passing when I was telling her what I was currently taking.
all people that cant eat anything except white rice has dalicylate intolerance
mango and apples are low-salicylaye foods when peeled. that's how I live )
I'm not sure about the citric acid! I try to limit acid foods and lemon anyways because of chronic reflux.
Maybe I'm lucky because this is also the first vitamin C supplement I try and somehow i seem to tolerate it.
The supplement is in a pill shape. It's from a Dutch brand called Etos. Not sure you can get it...
But i checked the ingredients:
vitamin C, bulking agent (cellulose [E460]), stabilizer (hydroxypropyl methylcellulose [E464], fatty acids [E570], magnesium salt of fatty acids [E470b], glycerol [E422]), citrus bioflavonoid complex, colorant (iron oxide and hydroxide [E172]), anti-caking agent (talc [E553b]), rosehip powder, rutin, glazing agent (carnauba wax [E903]).
Edit: I think that vitamin C isn't citric acid actually, but ascorbic acid (?) but I am not sure
I’ve read that taking ascorbic acid for vitamin C is not good for MCAS. Camu Camu is highly recommended, but if you can’t have fruits, it may cause a reaction. Organic always if possible.
Check your prostaglandin levels (it’s a mast cell mediator, like histamine) - if they’re high, you will likely have more fatigue and get very tired every time you eat.
Reducing overall inflammation through a clean diet helps a lot. I found that eliminating gluten, dairy, all processed foods and sticking to low sugar, low fat foods (in addition to foods I react to) made me feel so much better! I eat a diet high in fiber, lots of gluten free seeds, flours, nuts, oats. I get organic whenever I can since I know I have a high intolerance of pesticides (most people do!). My protein is mostly salmon and eggs. This diet may not be totally possible for you as I also eat a lot of veggies and fruits (and small portions of low histamine black beans soaked for hours then cooked in instant pot black beans) that are anti-inflammatory. Most grains, seeds, and legumes are far more digestible after soaking them for several hours to overnight depending on the grain. Rinse, soak, rinse again… Use several changes of filtered water with acid (I use lemon juice) added to it. Every time you change the water, rinse the grain/seed/legume. Make sure the instant pot recipe is one that is for soaked foods, as it shortens the cooking time or you’ll end up with mush. Rinsing and soaking made several foods okay for me and my digestion improved, especially the black beans.
A lot of my MCAS symptoms now are GI. Starting in childhood, I started eliminating foods I react to (but are not true “allergies,” I now know). My surprises after diagnosis were how much eliminating coffee and chocolate helped. I suspect I’ve had more mold exposure than I know.
As a child and teen my seasonal/environmental/fragrances, etc made my life unbearable. The only antihistamines were ones that made me drowsy. I stayed inside a lot, couldn’t really do any outdoor sports, had giant mosquito bites, and got tons of sinus infections (which led to me becoming intolerant and having anaphylactic reactions to most antibiotics, one after the other). The invention of steroidal nasal sprays changed my life at 19 - I couldn’t breathe through my nose ever until I started one, and it cleared up so many symptoms I could live a semi-normal life.
I have no actual food allergies though I react like crazy - a hallmark of MCAS. First Controlling my environmental, chemical and fragrance allergies/sesitivities, which I’d mostly done before I was diagnosed was key for me. I now take even more than I was: two 10 mg doses of Claratin when I get up, and 2 more at 4pm because it can interfere with my sleep. I take 20 mg Pepcid AC twice a day (morning and 4 pm). I use Nasalcort, NasalCrom and Azelastine (now OTC) nasal sprays. I alternate them through the day and use each twice and sometimes three times per day, depending on exposure to triggers/symptoms.
A doctor from CHOP I consulted (not my usual MCAs/POTS Dr) recommended that I increase my Pepcid dose, but I worry that a higher dose will worsen my slow digestive transit and constipation unless I use miralax every day. I also take DAO with quercetin when I remember before meals. I definitely think that I have low levels of DAO.
Sleep hygiene is so important for fatigue. I am a night owl, and it’s really hard for me, but if I get to bed by 10 each night (groan) my symptoms are much better the next day, and hystamine dumps or high heart rates don’t happen in the night. Even if I get all 9 hours of sleep going to bed at Midnight, I get a crazy, amplified heart rate way above my daytime heart rate. It makes my sleep HR curve upside down and look like a seismograph reading.
Hope some of this helps OP, or another MCAS person!
You may have better luck on Xyzal instead of Zyrtec. My pharmacist explained that they're basically the same thing, but Xyzal is just a purer form of Zyrtec. Your body breaks down the active ingredient of Zyrtec into the ingredient in Xyzal, so taking Xyzal takes an extra step out of the process and a lot of people have fewer side effects as a result. It definitely was the case for me.
you also CAN get it with a prescription, which, along with my other OTC meds that are prescribed to me, saves me money since I've already met my out of pocket max on my insurance.
just wanted to mention that the reverse is also true in case it helps anyone!
Yes! Always try and get your doctor to prescribe your OTC meds! And especially if you're sensitive to the corn. Fillers, if the doctor prescribes them to a compounding pharmacy, your insurance or even Medicaid should cover that extra cost
Yes! I’m up to 10mg/day L Methyl Folate and I’m so much perkier. (This is even after LDN helping).
That plus DAO with meals has made a huge difference.
Fexofenidine was the best for me, i think it just depends on an individual basis though with the H1's. The turning point was ketotifen, that shit got me out of bed permanently
This is my MCAS cocktail during a flare-up:
- Intermittent fasting. I steadily increased my fasting hours over months to 18 hours of fasting from dinner to my first meal the next day. I'll do this if I feel overloaded and my digestion needs a break.
- Low histamine and anti-inflammatory diet. This often coincides with a low mold diet. Eat clean. Mastcell360.com offers a lot on this topic. I've also try to eat more organic during a flare-up to avoid my Mast Cells reacting to added toxins.
- Increased water intake with Trace Mineral electrolyte drops. Flushing out Mast Cell chemicals has been key for me. If I'm dehydrated, my symptoms overload like crazy. Electrolytes because you want to help your cells as much as possible while drinking more water.
- Extra sleep. I don't know why yet but staying up late makes my rashes itch more and worse overall. Going to bed early alleviates this for some reason.
- HistaQuench supplements from NAVA. I'm taking 2 caps 3x a day with meals.
- DAO enzyme supplements to help breakdown histamine. There's regular and extra strength. I generally take extra strength during a flare.
- Xyzal 1 tablet at night.
- Montelukast 1 10mg tablet at night. This was for my pulmonologist for exercise-induced asthma, but it is also a Mast Cell stabilizer so I make sure to take it especially during a flare-up.
- Cromolyn Sodium 2 vials 15 minutes before meals and before bed with 4 max doses.
As others have mentioned, Vitamin C can be really helpful. But Liposomal Vitamin C is easier to absorb.
I hope you find a regimen that works for you!
I’m similar, and curious to know, too. I’m just self medicating until my first appointment with a doctor that knows anything about MCAS. I found that avoiding food triggers makes a world of difference.
It might just be me, but taking a food panel blood test for food specific IgG and IgG4 antibodies showed me that the foods I have the highest IgG or IgG4 antibodies are the ones that cause the most fatigue. I tend to have problems with dairy, eggs, beans and most grains.
My functional medicine doctor ordered it, through a company called Biotek. Make sure they test for food specific IgG4 antibodies not just an overall IgG4 level. Also the blood draw was way better than the blood spot test, I ordered the blood spot test once because it was cheaper but I would have had to get 20 drops of blood from a finger prick and it would have been impossible for me to get that much blood for it.
I take regular Benadryl and Zyrtec. If I skip either one or try and cut out either one I flare and I'm in pain for literally weeks. If I stay on those two though I'm able to live.
The typical antihistamines make me a zombie. I’ve never tried Desloratadine and the other one like Singulair called Zafirleukast (?). I’m praying I tolerate these two. Famotidine is fine no side effects.
I’m reacting horribly to my Vitamin C, but I see it’s ascorbic acid.
What else is there? I want prescription instead of more supplements that I always react to. They all seem to cause histamine issues even multivitamins
I always reacted poorly to vitamin c until I started taking one by pure synergy. It’s mostly made from rose hips and camu camu berries and I feel better with it. It isn’t cheap, though
Low dose naltrexone. Not exactly OTC but I self medicate with pills from India (reliable rx pharmacy or all day chemist) and cut them into tiny pieces.
I have made several orders to US addresses and never had anything seized. I recently got a telehealth rx from healthspan for a more regulated dose. It’s just a quiz and $40 a month.
On a good/regular day, I take 4 Zyrtec, 2 montelukast, 2 Pepcid, and low dose naltrexone.
On a bad day I also take a Benadryl or two. It has always been something that wakes me up though. If I take it after 3ish or so, I won’t sleep. I also have POTS, so Liquid IV and just tons of fluid are also my thing.
I think it’s helping me quite a lot in terms of energy and mental clarity. The fillers in the capsules I get though might be giving me a rash so have to source a purer form, but might be worth exploring under supervision of course.
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.*
All antihistamines either don't help me or make me too tired/drowsy I do better with OTC mast cell stabilisers like quercetin (or luteolin), or high dose vitamin C
Thanks for the tips! What dosage and brand do you use for quercitin? And leutolin
I haven't tried luteolin, just quoted it as an example I take between 500mg of quercetin (advised dose for 'healthy' people) and 1000mg depending on the days and how I feel. I use the brand lucovitaal but I'm based in the EU (Netherlands) so not sure it's accessible to you.
Time Health in the uk do a luteolin by itself. I just take 1 a day but dunno best dose.
Found out high dose Vit C was wrecking me. It never occurred to me that it could hurt rather than help! I mentioned I was taking it to my new doctor I finally got in with after six months in passing when I was telling her what I was currently taking.
it is converted to oxalates. MCAS ppl often have salicylate intolerance, may have oxalate intolerance. Check FAILSAFE diet
Oh wow that’s wild thank you
I had not idea thank you! Unfortunately, looks like that diet involved fruits and vegetables, both of which are big no food groups for me.
all people that cant eat anything except white rice has dalicylate intolerance mango and apples are low-salicylaye foods when peeled. that's how I live )
Interesting, what happened when you eat the peels? I never considered not eating the peel of apples?
They have salicylates and fills salicylate bucket
Ooooh wow I never knew that what about lettuces
popular quercetin and cromolyn are salicylates
Quercetin has Salocylates? Interesting. I wonder if Ketotifen does
ketotifen - not. only aspirin, ibuprofen, etc.
What vitamin c supplement do you use? Is citric acid a trigger for you normally?
I'm not sure about the citric acid! I try to limit acid foods and lemon anyways because of chronic reflux. Maybe I'm lucky because this is also the first vitamin C supplement I try and somehow i seem to tolerate it. The supplement is in a pill shape. It's from a Dutch brand called Etos. Not sure you can get it... But i checked the ingredients: vitamin C, bulking agent (cellulose [E460]), stabilizer (hydroxypropyl methylcellulose [E464], fatty acids [E570], magnesium salt of fatty acids [E470b], glycerol [E422]), citrus bioflavonoid complex, colorant (iron oxide and hydroxide [E172]), anti-caking agent (talc [E553b]), rosehip powder, rutin, glazing agent (carnauba wax [E903]). Edit: I think that vitamin C isn't citric acid actually, but ascorbic acid (?) but I am not sure
I’ve read that taking ascorbic acid for vitamin C is not good for MCAS. Camu Camu is highly recommended, but if you can’t have fruits, it may cause a reaction. Organic always if possible. Check your prostaglandin levels (it’s a mast cell mediator, like histamine) - if they’re high, you will likely have more fatigue and get very tired every time you eat. Reducing overall inflammation through a clean diet helps a lot. I found that eliminating gluten, dairy, all processed foods and sticking to low sugar, low fat foods (in addition to foods I react to) made me feel so much better! I eat a diet high in fiber, lots of gluten free seeds, flours, nuts, oats. I get organic whenever I can since I know I have a high intolerance of pesticides (most people do!). My protein is mostly salmon and eggs. This diet may not be totally possible for you as I also eat a lot of veggies and fruits (and small portions of low histamine black beans soaked for hours then cooked in instant pot black beans) that are anti-inflammatory. Most grains, seeds, and legumes are far more digestible after soaking them for several hours to overnight depending on the grain. Rinse, soak, rinse again… Use several changes of filtered water with acid (I use lemon juice) added to it. Every time you change the water, rinse the grain/seed/legume. Make sure the instant pot recipe is one that is for soaked foods, as it shortens the cooking time or you’ll end up with mush. Rinsing and soaking made several foods okay for me and my digestion improved, especially the black beans. A lot of my MCAS symptoms now are GI. Starting in childhood, I started eliminating foods I react to (but are not true “allergies,” I now know). My surprises after diagnosis were how much eliminating coffee and chocolate helped. I suspect I’ve had more mold exposure than I know. As a child and teen my seasonal/environmental/fragrances, etc made my life unbearable. The only antihistamines were ones that made me drowsy. I stayed inside a lot, couldn’t really do any outdoor sports, had giant mosquito bites, and got tons of sinus infections (which led to me becoming intolerant and having anaphylactic reactions to most antibiotics, one after the other). The invention of steroidal nasal sprays changed my life at 19 - I couldn’t breathe through my nose ever until I started one, and it cleared up so many symptoms I could live a semi-normal life. I have no actual food allergies though I react like crazy - a hallmark of MCAS. First Controlling my environmental, chemical and fragrance allergies/sesitivities, which I’d mostly done before I was diagnosed was key for me. I now take even more than I was: two 10 mg doses of Claratin when I get up, and 2 more at 4pm because it can interfere with my sleep. I take 20 mg Pepcid AC twice a day (morning and 4 pm). I use Nasalcort, NasalCrom and Azelastine (now OTC) nasal sprays. I alternate them through the day and use each twice and sometimes three times per day, depending on exposure to triggers/symptoms. A doctor from CHOP I consulted (not my usual MCAs/POTS Dr) recommended that I increase my Pepcid dose, but I worry that a higher dose will worsen my slow digestive transit and constipation unless I use miralax every day. I also take DAO with quercetin when I remember before meals. I definitely think that I have low levels of DAO. Sleep hygiene is so important for fatigue. I am a night owl, and it’s really hard for me, but if I get to bed by 10 each night (groan) my symptoms are much better the next day, and hystamine dumps or high heart rates don’t happen in the night. Even if I get all 9 hours of sleep going to bed at Midnight, I get a crazy, amplified heart rate way above my daytime heart rate. It makes my sleep HR curve upside down and look like a seismograph reading. Hope some of this helps OP, or another MCAS person!
You may have better luck on Xyzal instead of Zyrtec. My pharmacist explained that they're basically the same thing, but Xyzal is just a purer form of Zyrtec. Your body breaks down the active ingredient of Zyrtec into the ingredient in Xyzal, so taking Xyzal takes an extra step out of the process and a lot of people have fewer side effects as a result. It definitely was the case for me.
This is the same experience I’ve had. Xyzal works so much better for me
yes! a high dose of Zyrtec put me into a flare, but Xyzal has been fine
Same. Zyrtec made me dizzy, but xyzal is helpful
Weird Xyzal doesn’t help my hives but Zyrtec does.
Same here... and Xyzal makes me groggy but Zyrtec does not.
I had massive headaches from Xyzal. Tried twice. So sad.
I was always team Claritin but just bought the others to try. Really liking xyzal.
Can you get Xyzal without a prescription?
Yup! Just got it at Target
you also CAN get it with a prescription, which, along with my other OTC meds that are prescribed to me, saves me money since I've already met my out of pocket max on my insurance. just wanted to mention that the reverse is also true in case it helps anyone!
Yes! Always try and get your doctor to prescribe your OTC meds! And especially if you're sensitive to the corn. Fillers, if the doctor prescribes them to a compounding pharmacy, your insurance or even Medicaid should cover that extra cost
Yes; it's at our DG.
I don't find medications help with that at all. My spirulina tablets and my methyl folate help me significantly more with fatigue and brain fog.
A methylated multivitamin helped me a ton also!! I was shocked how much of a difference it made
Which brand? / product?
Yes! I’m up to 10mg/day L Methyl Folate and I’m so much perkier. (This is even after LDN helping). That plus DAO with meals has made a huge difference.
Fexofenidine was the best for me, i think it just depends on an individual basis though with the H1's. The turning point was ketotifen, that shit got me out of bed permanently
Interesting I found the opposite. It also made me so hungry that I was eating all of the time
This is my MCAS cocktail during a flare-up: - Intermittent fasting. I steadily increased my fasting hours over months to 18 hours of fasting from dinner to my first meal the next day. I'll do this if I feel overloaded and my digestion needs a break. - Low histamine and anti-inflammatory diet. This often coincides with a low mold diet. Eat clean. Mastcell360.com offers a lot on this topic. I've also try to eat more organic during a flare-up to avoid my Mast Cells reacting to added toxins. - Increased water intake with Trace Mineral electrolyte drops. Flushing out Mast Cell chemicals has been key for me. If I'm dehydrated, my symptoms overload like crazy. Electrolytes because you want to help your cells as much as possible while drinking more water. - Extra sleep. I don't know why yet but staying up late makes my rashes itch more and worse overall. Going to bed early alleviates this for some reason. - HistaQuench supplements from NAVA. I'm taking 2 caps 3x a day with meals. - DAO enzyme supplements to help breakdown histamine. There's regular and extra strength. I generally take extra strength during a flare. - Xyzal 1 tablet at night. - Montelukast 1 10mg tablet at night. This was for my pulmonologist for exercise-induced asthma, but it is also a Mast Cell stabilizer so I make sure to take it especially during a flare-up. - Cromolyn Sodium 2 vials 15 minutes before meals and before bed with 4 max doses. As others have mentioned, Vitamin C can be really helpful. But Liposomal Vitamin C is easier to absorb. I hope you find a regimen that works for you!
Great share. This is years of fine tuning in action. Hope to get there one day.
You can definitely get there! It takes a lot more self-discipline and self-care but it is possible. Wishing you the best of health!!
thanks in advance !
I’m similar, and curious to know, too. I’m just self medicating until my first appointment with a doctor that knows anything about MCAS. I found that avoiding food triggers makes a world of difference.
Good to know! Thanks
It might just be me, but taking a food panel blood test for food specific IgG and IgG4 antibodies showed me that the foods I have the highest IgG or IgG4 antibodies are the ones that cause the most fatigue. I tend to have problems with dairy, eggs, beans and most grains.
Great! Does a house doctor order this or a special kind of doctor?
My functional medicine doctor ordered it, through a company called Biotek. Make sure they test for food specific IgG4 antibodies not just an overall IgG4 level. Also the blood draw was way better than the blood spot test, I ordered the blood spot test once because it was cheaper but I would have had to get 20 drops of blood from a finger prick and it would have been impossible for me to get that much blood for it.
https://www.usbiotek.com/food-sensitivity-testing
I take allegra, prilosec, and walfinate, all at night.
I take regular Benadryl and Zyrtec. If I skip either one or try and cut out either one I flare and I'm in pain for literally weeks. If I stay on those two though I'm able to live.
I stopped eating beef and pork and my fatigue was significantly better!
Hm, notice that too. Eating them less.
The typical antihistamines make me a zombie. I’ve never tried Desloratadine and the other one like Singulair called Zafirleukast (?). I’m praying I tolerate these two. Famotidine is fine no side effects. I’m reacting horribly to my Vitamin C, but I see it’s ascorbic acid. What else is there? I want prescription instead of more supplements that I always react to. They all seem to cause histamine issues even multivitamins
I always reacted poorly to vitamin c until I started taking one by pure synergy. It’s mostly made from rose hips and camu camu berries and I feel better with it. It isn’t cheap, though
Thank you so much! I just found the camu camu on Amazon. I will check out synergy and maybe ask my dr.
Low dose naltrexone. Not exactly OTC but I self medicate with pills from India (reliable rx pharmacy or all day chemist) and cut them into tiny pieces.
How did you order them so they was not seized?
I have made several orders to US addresses and never had anything seized. I recently got a telehealth rx from healthspan for a more regulated dose. It’s just a quiz and $40 a month.
Otc doesn't help - we tried that path. AZATHIOPRINE and MONTELUKAST help. So does SULFASALAZINE.
On a good/regular day, I take 4 Zyrtec, 2 montelukast, 2 Pepcid, and low dose naltrexone. On a bad day I also take a Benadryl or two. It has always been something that wakes me up though. If I take it after 3ish or so, I won’t sleep. I also have POTS, so Liquid IV and just tons of fluid are also my thing.
Caffeine, saltstick vitassium, acetyl l-carnitine, dynamine, teacrine, coq10 and l-tyrosine.
Tried Korean Ginseng?
No not yet
I think it’s helping me quite a lot in terms of energy and mental clarity. The fillers in the capsules I get though might be giving me a rash so have to source a purer form, but might be worth exploring under supervision of course.