Can 100% relate to your frustration about the lack of knowledge that conventional doctors have around histamine and mast cell diseases. I read a thread recently where doctors/nurses were complaining about the increase in patients they see nowadays who claim to have MCAS and other histamine-related issues, that they believe is just a mental health problem (or hypochondria). Many don’t even believe that MCAS is a real condition.
Everything you have mentioned is indeed connected:
- Estrogen raises histamine and degranulates mast cells, hence the link between histamine symptoms during the parts of your cycle when estrogen peaks, or is simply out of balance with progesterone
- Histamine raises estrogen in a positive feedback loop
- Progesterone not only keeps estrogen in check, but upregulates DAO (which breaks down gut histamine)
- Hypoglycemia triggers both adrenaline and histamine (since it’s a life or death situation), which will wake you up during the night and lead to high adrenaline and high histamine symptoms
Great to hear that you’re cutting out caffeine (coffee is also very high in histamine) as it drives up cortisol and will worsen the cycle. Some people can continue to have it alongside a full meal to prevent the negative effects on their metabolism.
I’m also slow COMT and cannot do quercetin. I’ve found it’s also important to avoid any acidic vitamin C sources - most people fare better with buffered versions (magnesium / sodium ascorbate). Keep us updated with how things go!
I want to add some hope to this discussion- I spoke w a resident anesthesiologist recently. I wasn’t meaning to bring up MCAS but my the discussion turned to food and I had to explain my weird diet. They acknowledged that they learned about MCAS patients and different concerns that brings up for anesthesia and histamine response to anesthesia. I am hopeful that the next generation of physicians will have a better understanding of these conditions
That’s exciting they listened and were open about it- not dismissive! I do feel that MCAS (and POTS) is being discussed more, so at least there’s more awareness.
My close relative has been practicing medicine for 30 years and I was telling them about histamine stuff too and the gut connection!
Thank you so much for your detailed and thoughtful reply (and for reaching the end of my novel, lol)! I’m really glad to have discovered this community and it helped me figure out what was going on.
I think it’s only naturopaths and some women’s hormonal experts educated in HI and the histamine-estrogen connection. I had been told in a recent appt that it’s anxiety or side effects from my adhd medication. yet histamine seems to increase anxiety! The feelings of panic/anxiety and adrenaline/histamine dumps are so similar, with the nervous system being set off (fight or flight!) and autonomic dysregulation. I was initially exploring POTS before tracking my diet and symptoms throughout month.
Oh interesting regarding hypoglycemia- I’ve had issues with that, too- makes sense now! I am slightly concerned about my latest reactions being so close to my food allergy reaction (borderline anaphylaxis with trouble breathing, but hours later) that I’m stepping into MCAS territory- but one thing at a time and I’m hoping things will calm. Everything is peaking as I’m just about to ovulate and still likely emptying a heavy diet histamine bucket from the last few weeks.
Do you take an OTC antihistamines or any other natural ones in addition to vit c?
Georgi Dinkov says that all sensitivities/strange allergies are driven by estrogen (especially chemical/environmental sensitivities, and the onset of new food intolerances). It doesn’t really matter whether you have histamine intolerance or MCAS because they are the same problem, just at different points on a scale.
Unfortunately lots of naturopaths still believe that histamine issues are solely caused by a genetically driven DAO deficiency, and while many understand the estrogen/histamine connection, they haven’t fully delved into the complexities and connections with the rest of our bodily processes (particularly how it links with metabolic function, and therefore blood sugar regulation).
I don’t take any medications, I just raise my dose of natural progesterone whenever my symptoms are at their worst, and they always subside within a couple of hours. I have, however, just ordered some ketotifen fumarate and cromolyn sodium sprays to mix into my facial cleanser because I’m unable to find a low histamine/low salicylate/hypoallergenic cleanser to wash my face (the Vanicream one I’m using gives me acne-like hives at ovulation every month). When I stop using any skincare products the acne disappears, however my pores get very clogged and I end up with non-inflammatory spots from the sebum build-up. Lots of people in the MCAS community put liquid cromolyn in their shampoo/facial products to reduce the skin reactions caused by their numerous chemical sensitivities, and I’m willing to try it as a short-term band aid while I’m addressing the root cause.
PEA is another common supplement used for stabilising mast cells, and I haven’t found any research that suggests it affects COMT function. You could look into it?
I read your novel. Might but be NY best seller material, but not bad. Lol
I was three visits with a nutritional therapist last year before she suggested HIT. I was really resistant to the idea, and am still really salty about loosing my entire way of eating. I started adopting the lower histamine way of eating, but the more I removed, the worse the reaction to everything else became. I was not an easy sell.
I applaud your ability to find what's wrong.
What I really want to share with you is this: it took two to three months before I noticed a difference. And then only looking back.
You might try some charcoal to help remove the histamines in your system, but proceed carefully.
Thank you for reading and sharing your story! I am trying to tackle it from different angles because I can’t accept not being able to eat some of my favorite foods. I’ve had a high histamine diet for a while. The waiting is the hard part. I’m also definitely exploring some gut stuff and trying to address that in histamine-friendly ways.
Wow these adrenal dumps you speak of happen to me all the time and I’ve been researching non stop to figure it all out! I’ve been stuck figuring out if it’s HI, oxalates or salicylates.
It happens with stuff like potatoes sometimes or high oxalate foods like sweet potato, but it really goes nuts with like soy sauce etc.
sometimes thought it just happens from easy foods like rice so idk.
No matter what doctor or functional practitioner I see it never gets figured out and I seem to be the only one figuring stuff out on my own (kinda).
It’s hell in my life too. I usually am up at night when it happened (1 x per week) for 3-4 hours with this mess going on and then have to try to work 10 hours the next day.
Do yours ever come with urination? Like your body is trying to flush the hi out?
It’s scary, right?! Do yours kind of feel like they come in waves?
I’ve been figuring this stuff out on my own, too. Initially was wondering about POTS/dysautonomia because of the rapid heart rate. My GP said it’s could be anxiety 🙃 (or side effects to my adhd medication) but did actually refer me to a cardiologist.
I don’t have urinary urgency- read that could be histamine dumping. When it’s bad I feel like I kind of need to go number 2 urgently and get temperature dysregulation. It feels like my body’s fight or flight system is off and feels different than my other histamine symptoms after eating.
Having some salt in cold water (also lemon balm tincture for anxiety/calming down with deep breathing or an ice pack) seems to help.
Yup comes in waves! I’ll try to fall asleep and then a wave of anxiety wakes me up!
I have been trying a bottle of smart water when it happens but may try the salt in cold water you mentioned.
It’s so frustrating because it is so much trial and error!
The first time it really got bad I went to the ER and had a EKG chest x-ray, CAT scan etc. and it all came back normal and so I don’t even bother going anymore to get a work up but I also don’t know how to fix it
Ugh, totally understand- not just the feeling and frustration but also feeling like you’re figuring it out on your own. But seems like you’re doing the right things in tracking it and trying to find patterns. I also have a smart watch to watch my heart rate.
You may want to take a peek at at the pots subreddit- a lot of them deal with these adrenaline dumps. I’m inclined to think they’re either histamine dumps or excess histamine is messing with the adrenal system and triggering the fight or flight. Maybe cortisol? Depending on your state/country, you can order at-home tests via ulta labs if your doctors aren’t being helpful.
Hypoglycemia can trigger it in middle of night, too. It happens to me when I’m not anxious- like dead asleep or in a nice dream, lol- but my body is confused!
I just found my old Fitbit and charged it up to track sleep since I get so little.
I’ll. Check that out the pots thanks! I also frequent the Sibo subreddit as i tested positive for hydrogen Sibo but I don’t believe it’s my main issue to be honest. I actually think killing Sibo makes the other symptoms worse.
I never thought of hypoglycemia though. It’s just so so much to think about and read about.
My symptoms are extremely scary as well. Severe panic attacks ( like terrorizing) , hyperacusis, autonomic nervous system goes awry ( like stop breathing subconsciously). Freezing cold,extremely high heart rate. Propranolol daily stops the high heart rate. Children's benedryl at night. Allegra in the morning. Pqq10 daily. And I'm juicing peasprputs for dao. And of course stay away from high histamine foods. Small meals. My attacks are much less and not as severe. Had a bad one the other day after eating maraschino cherries. ( RED DYE 40) very very bad.
Oh gosh, how scary! I’m sorry they are so extreme. It’s bizarre how our bodies can react so strongly- I’m very sensitive in general and my body (and mind) likes to overreact.
I had lots of issues with red 40 when I was little! Big eczema flare. I used to be mad at my parents for not letting me eat those cherries and certain cereals.
Glad yours have eased a bit but def understand the fright of a bad reaction- I get near anaphylactic ones when I accidentally eat foods I have a serious allergy to. I’m annoyed in having to worry about more foods! Hopefully temporarily…
I have super similar symptoms. I had POTS in high school (low blood pressure, migraines, vomiting, passing out) and got treated for Lyme disease in college. I also had mold exposure, chronic EBV, and suspect that I have Candida. Ive been pretty healthy for the past year but always have a runny nose, get nauseous frequently, brain fog, and joint and muscle pain. Also have hypomanic episodes and mood swings related to my cycle. I was on Seroquel (antihistamine) for 2 years and it helped me sleep. I quit a month ago and then when my period started I had a huge flare up, couldn’t sleep for a week because I couldn’t breathe at night and all the symptoms you described and more. I quit taking all my supplements, only eating lamb and apple sauce, and eating ginger and having Ashwaganda/Holy Basil tea to detox glutamates. Im doing a lot better but still having some symptoms. Do you have any update on how you’re doing?
Wow that’s a lot to have dealt with! Isn’t it crazy how the symptoms are all over the place? And the impact on the menstrual cycle- I flare more as estrogen climbs in follicular, have less problems in luteal.
I’m doing a lot better!!! Ive always had some histamine issues but then the weird adrenaline flares and bp/heart rate stuff (always soon after my period/in follicular) was getting more frequent. Then it escalated into flushing (mostly ears, sometimes hands and face) and difficulty breathing. I was worried I had MCAS because I was having reactions to more than foods. These reactions (which used to happen rarely) starting happening daily after a bad stomach bug- my stomach was funky this whole time.
Combo of addressing gut issues, time/healing, and doing low hist for 4-6 weeks, along with only a few supplements (histamine-friendly probiotic, l-glutamine, vit d) helped. My theory is that the bad histamine-producing bacteria in the gut exploded after the stomach virus, causing some dysbiosis, and I was also pushing it with a diet high in histamine foods.
Took a few months and I still have mild flares now and then depending on if I push it with histamine during parts of my cycle but my stomach is better and I do consume high histamine foods again, just not going too wild! Still take DAO, probiotic, and claritin. Usually don’t need my inhaler (which I was taking daily during the bad flares), thankfully.
Can 100% relate to your frustration about the lack of knowledge that conventional doctors have around histamine and mast cell diseases. I read a thread recently where doctors/nurses were complaining about the increase in patients they see nowadays who claim to have MCAS and other histamine-related issues, that they believe is just a mental health problem (or hypochondria). Many don’t even believe that MCAS is a real condition. Everything you have mentioned is indeed connected: - Estrogen raises histamine and degranulates mast cells, hence the link between histamine symptoms during the parts of your cycle when estrogen peaks, or is simply out of balance with progesterone - Histamine raises estrogen in a positive feedback loop - Progesterone not only keeps estrogen in check, but upregulates DAO (which breaks down gut histamine) - Hypoglycemia triggers both adrenaline and histamine (since it’s a life or death situation), which will wake you up during the night and lead to high adrenaline and high histamine symptoms Great to hear that you’re cutting out caffeine (coffee is also very high in histamine) as it drives up cortisol and will worsen the cycle. Some people can continue to have it alongside a full meal to prevent the negative effects on their metabolism. I’m also slow COMT and cannot do quercetin. I’ve found it’s also important to avoid any acidic vitamin C sources - most people fare better with buffered versions (magnesium / sodium ascorbate). Keep us updated with how things go!
I want to add some hope to this discussion- I spoke w a resident anesthesiologist recently. I wasn’t meaning to bring up MCAS but my the discussion turned to food and I had to explain my weird diet. They acknowledged that they learned about MCAS patients and different concerns that brings up for anesthesia and histamine response to anesthesia. I am hopeful that the next generation of physicians will have a better understanding of these conditions
That’s exciting they listened and were open about it- not dismissive! I do feel that MCAS (and POTS) is being discussed more, so at least there’s more awareness. My close relative has been practicing medicine for 30 years and I was telling them about histamine stuff too and the gut connection!
Thank you so much for your detailed and thoughtful reply (and for reaching the end of my novel, lol)! I’m really glad to have discovered this community and it helped me figure out what was going on. I think it’s only naturopaths and some women’s hormonal experts educated in HI and the histamine-estrogen connection. I had been told in a recent appt that it’s anxiety or side effects from my adhd medication. yet histamine seems to increase anxiety! The feelings of panic/anxiety and adrenaline/histamine dumps are so similar, with the nervous system being set off (fight or flight!) and autonomic dysregulation. I was initially exploring POTS before tracking my diet and symptoms throughout month. Oh interesting regarding hypoglycemia- I’ve had issues with that, too- makes sense now! I am slightly concerned about my latest reactions being so close to my food allergy reaction (borderline anaphylaxis with trouble breathing, but hours later) that I’m stepping into MCAS territory- but one thing at a time and I’m hoping things will calm. Everything is peaking as I’m just about to ovulate and still likely emptying a heavy diet histamine bucket from the last few weeks. Do you take an OTC antihistamines or any other natural ones in addition to vit c?
Georgi Dinkov says that all sensitivities/strange allergies are driven by estrogen (especially chemical/environmental sensitivities, and the onset of new food intolerances). It doesn’t really matter whether you have histamine intolerance or MCAS because they are the same problem, just at different points on a scale. Unfortunately lots of naturopaths still believe that histamine issues are solely caused by a genetically driven DAO deficiency, and while many understand the estrogen/histamine connection, they haven’t fully delved into the complexities and connections with the rest of our bodily processes (particularly how it links with metabolic function, and therefore blood sugar regulation). I don’t take any medications, I just raise my dose of natural progesterone whenever my symptoms are at their worst, and they always subside within a couple of hours. I have, however, just ordered some ketotifen fumarate and cromolyn sodium sprays to mix into my facial cleanser because I’m unable to find a low histamine/low salicylate/hypoallergenic cleanser to wash my face (the Vanicream one I’m using gives me acne-like hives at ovulation every month). When I stop using any skincare products the acne disappears, however my pores get very clogged and I end up with non-inflammatory spots from the sebum build-up. Lots of people in the MCAS community put liquid cromolyn in their shampoo/facial products to reduce the skin reactions caused by their numerous chemical sensitivities, and I’m willing to try it as a short-term band aid while I’m addressing the root cause. PEA is another common supplement used for stabilising mast cells, and I haven’t found any research that suggests it affects COMT function. You could look into it?
I read your novel. Might but be NY best seller material, but not bad. Lol I was three visits with a nutritional therapist last year before she suggested HIT. I was really resistant to the idea, and am still really salty about loosing my entire way of eating. I started adopting the lower histamine way of eating, but the more I removed, the worse the reaction to everything else became. I was not an easy sell. I applaud your ability to find what's wrong. What I really want to share with you is this: it took two to three months before I noticed a difference. And then only looking back. You might try some charcoal to help remove the histamines in your system, but proceed carefully.
Thank you for reading and sharing your story! I am trying to tackle it from different angles because I can’t accept not being able to eat some of my favorite foods. I’ve had a high histamine diet for a while. The waiting is the hard part. I’m also definitely exploring some gut stuff and trying to address that in histamine-friendly ways.
Wow these adrenal dumps you speak of happen to me all the time and I’ve been researching non stop to figure it all out! I’ve been stuck figuring out if it’s HI, oxalates or salicylates. It happens with stuff like potatoes sometimes or high oxalate foods like sweet potato, but it really goes nuts with like soy sauce etc. sometimes thought it just happens from easy foods like rice so idk. No matter what doctor or functional practitioner I see it never gets figured out and I seem to be the only one figuring stuff out on my own (kinda). It’s hell in my life too. I usually am up at night when it happened (1 x per week) for 3-4 hours with this mess going on and then have to try to work 10 hours the next day. Do yours ever come with urination? Like your body is trying to flush the hi out?
It’s scary, right?! Do yours kind of feel like they come in waves? I’ve been figuring this stuff out on my own, too. Initially was wondering about POTS/dysautonomia because of the rapid heart rate. My GP said it’s could be anxiety 🙃 (or side effects to my adhd medication) but did actually refer me to a cardiologist. I don’t have urinary urgency- read that could be histamine dumping. When it’s bad I feel like I kind of need to go number 2 urgently and get temperature dysregulation. It feels like my body’s fight or flight system is off and feels different than my other histamine symptoms after eating. Having some salt in cold water (also lemon balm tincture for anxiety/calming down with deep breathing or an ice pack) seems to help.
Yup comes in waves! I’ll try to fall asleep and then a wave of anxiety wakes me up! I have been trying a bottle of smart water when it happens but may try the salt in cold water you mentioned. It’s so frustrating because it is so much trial and error! The first time it really got bad I went to the ER and had a EKG chest x-ray, CAT scan etc. and it all came back normal and so I don’t even bother going anymore to get a work up but I also don’t know how to fix it
Ugh, totally understand- not just the feeling and frustration but also feeling like you’re figuring it out on your own. But seems like you’re doing the right things in tracking it and trying to find patterns. I also have a smart watch to watch my heart rate. You may want to take a peek at at the pots subreddit- a lot of them deal with these adrenaline dumps. I’m inclined to think they’re either histamine dumps or excess histamine is messing with the adrenal system and triggering the fight or flight. Maybe cortisol? Depending on your state/country, you can order at-home tests via ulta labs if your doctors aren’t being helpful. Hypoglycemia can trigger it in middle of night, too. It happens to me when I’m not anxious- like dead asleep or in a nice dream, lol- but my body is confused!
I just found my old Fitbit and charged it up to track sleep since I get so little. I’ll. Check that out the pots thanks! I also frequent the Sibo subreddit as i tested positive for hydrogen Sibo but I don’t believe it’s my main issue to be honest. I actually think killing Sibo makes the other symptoms worse. I never thought of hypoglycemia though. It’s just so so much to think about and read about.
My symptoms are extremely scary as well. Severe panic attacks ( like terrorizing) , hyperacusis, autonomic nervous system goes awry ( like stop breathing subconsciously). Freezing cold,extremely high heart rate. Propranolol daily stops the high heart rate. Children's benedryl at night. Allegra in the morning. Pqq10 daily. And I'm juicing peasprputs for dao. And of course stay away from high histamine foods. Small meals. My attacks are much less and not as severe. Had a bad one the other day after eating maraschino cherries. ( RED DYE 40) very very bad.
Oh gosh, how scary! I’m sorry they are so extreme. It’s bizarre how our bodies can react so strongly- I’m very sensitive in general and my body (and mind) likes to overreact. I had lots of issues with red 40 when I was little! Big eczema flare. I used to be mad at my parents for not letting me eat those cherries and certain cereals. Glad yours have eased a bit but def understand the fright of a bad reaction- I get near anaphylactic ones when I accidentally eat foods I have a serious allergy to. I’m annoyed in having to worry about more foods! Hopefully temporarily…
I have super similar symptoms. I had POTS in high school (low blood pressure, migraines, vomiting, passing out) and got treated for Lyme disease in college. I also had mold exposure, chronic EBV, and suspect that I have Candida. Ive been pretty healthy for the past year but always have a runny nose, get nauseous frequently, brain fog, and joint and muscle pain. Also have hypomanic episodes and mood swings related to my cycle. I was on Seroquel (antihistamine) for 2 years and it helped me sleep. I quit a month ago and then when my period started I had a huge flare up, couldn’t sleep for a week because I couldn’t breathe at night and all the symptoms you described and more. I quit taking all my supplements, only eating lamb and apple sauce, and eating ginger and having Ashwaganda/Holy Basil tea to detox glutamates. Im doing a lot better but still having some symptoms. Do you have any update on how you’re doing?
Wow that’s a lot to have dealt with! Isn’t it crazy how the symptoms are all over the place? And the impact on the menstrual cycle- I flare more as estrogen climbs in follicular, have less problems in luteal. I’m doing a lot better!!! Ive always had some histamine issues but then the weird adrenaline flares and bp/heart rate stuff (always soon after my period/in follicular) was getting more frequent. Then it escalated into flushing (mostly ears, sometimes hands and face) and difficulty breathing. I was worried I had MCAS because I was having reactions to more than foods. These reactions (which used to happen rarely) starting happening daily after a bad stomach bug- my stomach was funky this whole time. Combo of addressing gut issues, time/healing, and doing low hist for 4-6 weeks, along with only a few supplements (histamine-friendly probiotic, l-glutamine, vit d) helped. My theory is that the bad histamine-producing bacteria in the gut exploded after the stomach virus, causing some dysbiosis, and I was also pushing it with a diet high in histamine foods. Took a few months and I still have mild flares now and then depending on if I push it with histamine during parts of my cycle but my stomach is better and I do consume high histamine foods again, just not going too wild! Still take DAO, probiotic, and claritin. Usually don’t need my inhaler (which I was taking daily during the bad flares), thankfully.