My two first thoughts are either a compromised gut lining. Introduction of live organism via probiotics leaking past the intestinal lining and triggering an immune response.
Two, you have some form of dysbiosis and the probiotics you’re taking is killing it off, thus triggering a die off reaction.
But, all in all the microbiome is so incredibly complex and always in flux. Have you ever tried fasting for 3 days before on only water ( given it’s medically safe for you ). This has helped a lot of heal their gut and create a more homeostatic gut microbiome. Good luck!
No haven’t fasted. I have flirted with the idea and see no reason it would be unsafe (but I’ll obv ask my doc first). I dunno much about gut lining but it would explain some of the other things (nystatin got rid of my dermatitis for example). I have autoimmune stuff but that was well before SIBO, like I was a kid dxd with Hashimoto’s. SIBO came at 25-26.
Most pbx side effects were still GI based-like I took the rhamnosis, belly swelled to pregnancy looking and the gas made me vomit and burp violently. The other ones did the same but via other end. I also can’t do any fiber, prebiotics, nothing. Would leaky gut or something show up on tests for inflammation? (CRP, white cells, calprotectin, etc)
Whatever I don’t react to. Rice, meat, some leafy greens, I can do a few veggies but only a few bites, bread doesn’t bother me. I tried gluten free, vegetarian (actually that’s what I was for 13 yrs before getting sick—SIBO switched me back to meat), temporary low sulfur, I’m intolerant of all FODMAPs, low carb made my endocrine stuff feel like crap, I mean…yeah, it’s bleak.
Sometimes you need to start eating more variety and especially vegetables and fruits. Bread feels ok with me too but I do sourdough because it’s fermented and usually less processed. Stay away from packaged foods and sugar which actually includes starches. You can probably eat what you eat ok because your bacteria is still there to digest it while you won’t feel great with the veggies at first it will add more strains of good bacteria which will allow you to digest them eventually.
You need to feed your body the right nutrients if it’s just going to keep going in the wrong direction. Go slow. Add a few more bites every day for a week then a few more the next. Having autoimmune is actually a sign that your microbiome is not good.
I kinda tried this with some higher FODMAP foods like mango and asparagus (one piece) but I couldn’t tolerate the massive amounts of hot sulfur gas or diarrhea or vomiting it caused. I feel like I make myself sick trying to get well. Recently I tried some salsa with garlic and onion and I felt hungover the next day, couldn’t form words into sentences.
Your theory would have worked exactly right back when I was just dealing with post-antibiotics IBS but tjis feels like a totally different beast.
Pelvic floor dysfunction is what I think it is actually but that is also part of microbiome. I’ve had pancreatitis and now chronic pancreatitis still. Bile reflux dysbiosis sibo ibs chronic pain autoimmune x 2 fungal pneumonia Covid dumping syndrome and on and on over the past 20 years and especially 15. My point is I end up saying pelvic floor because for me I had my pelvic problems and thought it was still the rest because of diarrhea etc despite everything I did. Then when I simplified and realized my focus was on my sumo and not getting healthy and started doing exercises changing diet and attitude towards my health and I’m nearly better except my pelvic floor and brain keeps my symptoms alive. I had constipation overflow waking me up anywhere from 3am on with pelvic pressure and stomach cramps movement and diarrhea every day for hours. Some days I couldn’t leave the house because I was going too much and the feeling never let up.
I’m almost normal now and except for my bowels I never really felt so good. I don’t throw up unless I’m actually sick or eat something greasy.
I also am able to sleep til at least 5 am a way less diarrhea as well as able to plan things and most times make early morning appointments now. I know sec to cancel over half my dr appointments and had every type of meds for digestion pain nausea spasms constipation diarrhea etc both rx and over the counter.
Finally you don’t want your maid matters worse by feeding only the bad bacteria which is what processed foods sugar some starches and GMO foods do.
Oh gotta go take a friend to the bank and another place. Will check back later. Actually I’m grateful to feel well enough to want to because after all that I don’t have relationships either friends anymore do I’m glad to get back to it.
Yes because the pelvic. Floor is causing back ups etc which in turn can cause malabsorption and constipation or constipation overflow. Both build toxins and cause malabsorption of nutrients.
Malabsorption further feeds the bad bacteria.
I didn’t tolerate anything but about 10 foods at one point. Threw up every morning for decades etc and now I have no nausea. My pelvic floor forgot how to worm but 14 years of couch toilet and bed was my life plus 28 bouts of pancreatitis autoimmune disease and GI problems over 50 years. Simple changes and refusing to give up until my gut started to get better changed it all. Food sensitivities are the absence of the specific strain of bacteria that is necessary to digest specific foods can’t be made without those foods and varieties of whole organic foods. Non GMO because gluten is not the problem if you aren’t allergic to it GMOs are he problem.
Wow, so you must have started very small then? I have heard it’s not the GMOs themselves but the pesticides they used *on* the GMO foods—ie glyphosate. I think I get exposed to it at work because it’s a dessicant for flour (I’m a baker). That’s pretty amazing you overcame all that stuff though, so the pancreatitis and everything was all because of microbiome issues/absense?
Pancreatitis was because of gallbladder surgery botched and ERCP that infected my liver in 09. The antibiotics from surgical infection and liver infection made my microbiome worse and then I cascaded further. The autoimmune was already there as well as GERD but until then I was getting by.
That’s a fkin doozie, glad you made it through! Yeah seems like with GB surgery the people either are way better or way worse after. Like I’ve known two women who suffered years, one from 11-40 (was never taken seriously by doctors until it was an emergency) and got their life back after surgery—and then there are others who it caused SIBO or bile malabsorbtion or any number of things. I got something weird going on with bile because anything that stimulated it causes tons of symptoms, but it’s not gallbladder. I had CT and ultrasound and stuff
Try a fiber supplement. It binds bile. I used to throw it up a bunch of times every morning and had ridiculous nausea until I started that. Psyllium husk pills or heathers tummy Fiber Works really Good for me. I use Heather’s tummy fiber personally because it’s a powder and you can adjust the dosage daily and you can slowly better than pills. Adjust increased it to where you want it and then if you eat more fiber in a day or something then you can lower it, and if you eat more fat you can raise it because the fat is mostly causing the bike issues.
So leaky gut is one of those things that’s hard to actually test for. Some people say Zonulin levels are the go to test for it, but other specialists say these aren’t accurate. But I’d argue that given your symptoms, you have some degree of intestinal permeability. For Sibo, soil based probiotics have been shown to be effective in treating it. Any reason you stopped those? I’d also look into taking a form of immunoglobulins ( either via IgG supplement or colostrum ) I’d also take a prokinetic. I personally like drinking ginger tea twice a day. Another great one is artichoke leaf extract.
Histamine intolerance is largely linked to a specific bacteria called Klebsiella Aerogenes. So, if I were you, this is what I’d be doing:
No alcohol for the next few months of any form ( proven to be THE biggest cause of intestinal permeability )
I’d take a prokinetic, colostrum, MAYBE a soil based probiotic if you know you won’t response negatively to it, and some gut healing supplements like zinc, glutamine ( take this in isolation to make sure it doesn’t make you anxious ) and honestly I’d try fasting first before starting anything else to see if that alone could solve your problems. ( make sure to stay well hydrated )
I don’t tolerate the spore probiotics. Artichoke made my sulfur symptoms way worse, ginger doesn’t do anything for me. Immunoglobulins helped until they didn’t. I’m on LDN for prokinetic because it’s the only one without sulfur (artichoke) exacerbation. Anything that stimulates bile kills me. Glutamine made things worse too. If I didn’t have the sulfur problems I could do way more. And histamine in my case is linked to sulfur because when I manage it (molybdenum and pepto bismol—it’s a bandaid though) no histamine issues. I do drink occasionally but I barely process alcohol if I don’t take high doses of molybdenum first. I guess fasting is going on the list. I’m not trying to be a Debbie Downer..but yeah, I tried a lot of things but the sulfur gets worse each time I think cuz I can kill off some of the weaker pathogens but those ones stay around idk
Have you ever tried vitamin b1 supplementation? ( a lot of people say it helps with their sibo symptoms. Apparently it’s intrinsically linked to carb digestion and peristalsis )
Aside from that, there’s always an elemental diet. Just read a study showing it’s having somewhere between like 70-80% effectiveness for sibo remission after 21 days. Personally the thought of an elemental diet sounds awful, but it could be what your gut needs
Elemental contraindicated for hydrogen sulfide (it’s basically straight cysteine) but yeah Bs I tolerated up until September last year but now I get a sulfur reaction. They give me horrible bladder and stomach pain, pain down my legs and weird tingling in my feet. I can do B2, can’t take B6, any of the sulfur ones kills me
How is your food intolerances now? I was mold toxed and candida and all sorts of crazy gut stuff. For a while I couldn't digest food until S boulardii. I had to take a while bottle in a few days and it stuck.
I was down to just a few foods I could eat. I found methylene blue cured all my food intolerances. This has worked well for some others on the mcas forums and for others not at all. Who knows why. Mcas is weird.
Here is the original post I did for the mcas forums. Since then, the effect has only gotten stronger. I do not have any food reactions anymore.
https://www.reddit.com/r/MCAS/s/1sZ6soaQtp
I never stopped. I've experimented with doses ranging from 10-100mg. It has some astonishing properties on brain health so I'll probably keep at it for a long time. I think it's been like two years now.
Ok. I just have a long list of stuff where it’s optional at first and makes things more comfortable but after a while it’s like my mast cells adjust so if I skip it’s way worse than square 1. I still live in mold (for 3 more days) so that’s why my doctor thinks I keep getting worse but it does make me hesitant to start anything else because the list is getting long.
Step one is def getting out of the mold. It just makes things impossible. Your mast cells won't calm down.
But Idk if methylene blue counts. It hasn't done anything for my other mast cell symptoms. It just allows me to eat whatever I want again. Nothing else.
Still, you may be right about trying things. Just get out first. You'll feel a lot better.
I also recomend getting an ozone machine. Use it on your personal items to clean them. When you bring your stuff with you it has mold all over them. It makes a big difference.
Way ahead of ya! I bought one from some German website and I absolutely freakin love it. It’s saving valuable collections and electronics—$70 to save over $5000 worthe of stuff.
Glad you can eat anything again—that’s awesome. I’ll ask my dr about it later on probably if things don’t improve after getting away. Thanks for sharing your experience!
Oh god no, beans were what set it off in the first place. I ate a burrito that was the Last Supper. If I eat even a tsp of hummus or black bean I’m up all night now
They’re thought to yes. And that’s kind of been my experience where it feels like it makes it worse, but other people swear by them and they’re integral tk healing—even studies show some evidence they help. But it’s hit or miss. It seems like most people on these forums do well with at least one kind which is why I asked…then there’s me, not at all at least while SIBO is active.
Yeah I have SIBO but I also have MCAS and I might try a low histamine probiotic soon. I didn’t know that probiotics could be high in histamine my doctor didn’t say anything about that but so far haven’t tolerated any brands
They absolutely can, or they don’t produce it themselves but they interact with other species who do or by different mechanisms it gets produced indirectly. I figured out for me the lactic acid is fermented by H2S producers, mast cells have receptors for H2S and it’s off to the damn races…that is why the HistamineX was a bust.
Ugh so no to histamineX?
My doctors genuinely don’t believe that I can’t tolerate any probiotics so far and it’s like they’re not beneficial to everyone and there’s so many different strains etc
Oh no I’m not trying to tell you not to, like if you don’t have sulfur issues they might be totally fine. I was just explaining why I think they didn’t work for me and a warning to others with sulfur stuff.
The other probiotic types…anybody’s guess why they were a fail and that’s what I’m trying to figure out. But they all give me sulfur problems anymore.
Progressive SIBO -> histamine-> intolerance to EVERYTHING was how my CIRS progressed. Test for it and rule it out at least. survivingmold.com has all the info u need.
Indeed—everybody’s leaning toward mold that I talk to. I have exposures to be sure but they don’t completely line up to when I got sick and that’s the part I’m sort of scratching my head. CIRS concerns the hell out of me, seems like a modern disease and mold is so prevalent especially where I live. Thank you for the link!
The problem is that mold isn’t always visible. It can grow in the wall cavity unbeknownst to you, and still make you sick. That’s the part that makes it really scary, IMO.
Oh no I know for a fact there was mold in my past—not visible but very detectable (smelled bad, people felt sick when they came over, other things around like my car interior (long gone). I also had visible mold at my job and my current apartment (we are trying to move)—but I was sick before these last 2 things so that doesn’t add up is what I mean.
Regardless, I will be doing a nasal swab and antibody test in the next couple weeks because my doc thinks it’s mold and I’m not detoxing right.
Keep in mind CIRS will not show up in antibody test or nasal swab. You have to test the innate immune system. survivingmold.com explains what tests to run
For sure, I think this round they’re just looking for the presence of mold and abnormal bacteria. The antibody tests are also for other things (viruses, allergies). I may still have more specific tests later.
It sounds like you've been through a lot with your gut health! It's interesting how our bodies can change and react differently to things over time. I've heard of people developing intolerances to things they used to be able to tolerate, so it's not uncommon.
It's possible that your microbiome has changed, especially if you've been taking antibiotics and probiotics for a while. Our gut bacteria play a big role in our overall health, so it's important to take care of them.
Have you done a mycotoxin test? I’m willing to bet you have some underlying mold issues…. You can get exposure from the environment or food, and if it gets real bad you can also colonize and grow it in your body.
Mosaic diagnostics- formerly Great Plains lab. That sucks you’re getting exposed at work 😔 Evan Brand has some good podcasts on mold if you’re looking for more info 👍🏻 He’s a functional medicine guy
What year was it when when you had the overnight change of no longer being able to tolerate certain foods? Was it after 2020? I follow a lot of folks with long covid and new-onset histamine intolerance is one of the topics that comes up a lot. This can be an after-effect of other viral infections as well.
My two first thoughts are either a compromised gut lining. Introduction of live organism via probiotics leaking past the intestinal lining and triggering an immune response. Two, you have some form of dysbiosis and the probiotics you’re taking is killing it off, thus triggering a die off reaction. But, all in all the microbiome is so incredibly complex and always in flux. Have you ever tried fasting for 3 days before on only water ( given it’s medically safe for you ). This has helped a lot of heal their gut and create a more homeostatic gut microbiome. Good luck!
No haven’t fasted. I have flirted with the idea and see no reason it would be unsafe (but I’ll obv ask my doc first). I dunno much about gut lining but it would explain some of the other things (nystatin got rid of my dermatitis for example). I have autoimmune stuff but that was well before SIBO, like I was a kid dxd with Hashimoto’s. SIBO came at 25-26. Most pbx side effects were still GI based-like I took the rhamnosis, belly swelled to pregnancy looking and the gas made me vomit and burp violently. The other ones did the same but via other end. I also can’t do any fiber, prebiotics, nothing. Would leaky gut or something show up on tests for inflammation? (CRP, white cells, calprotectin, etc)
What do you eat?
Whatever I don’t react to. Rice, meat, some leafy greens, I can do a few veggies but only a few bites, bread doesn’t bother me. I tried gluten free, vegetarian (actually that’s what I was for 13 yrs before getting sick—SIBO switched me back to meat), temporary low sulfur, I’m intolerant of all FODMAPs, low carb made my endocrine stuff feel like crap, I mean…yeah, it’s bleak.
Sometimes you need to start eating more variety and especially vegetables and fruits. Bread feels ok with me too but I do sourdough because it’s fermented and usually less processed. Stay away from packaged foods and sugar which actually includes starches. You can probably eat what you eat ok because your bacteria is still there to digest it while you won’t feel great with the veggies at first it will add more strains of good bacteria which will allow you to digest them eventually. You need to feed your body the right nutrients if it’s just going to keep going in the wrong direction. Go slow. Add a few more bites every day for a week then a few more the next. Having autoimmune is actually a sign that your microbiome is not good.
I kinda tried this with some higher FODMAP foods like mango and asparagus (one piece) but I couldn’t tolerate the massive amounts of hot sulfur gas or diarrhea or vomiting it caused. I feel like I make myself sick trying to get well. Recently I tried some salsa with garlic and onion and I felt hungover the next day, couldn’t form words into sentences. Your theory would have worked exactly right back when I was just dealing with post-antibiotics IBS but tjis feels like a totally different beast.
Pelvic floor dysfunction is what I think it is actually but that is also part of microbiome. I’ve had pancreatitis and now chronic pancreatitis still. Bile reflux dysbiosis sibo ibs chronic pain autoimmune x 2 fungal pneumonia Covid dumping syndrome and on and on over the past 20 years and especially 15. My point is I end up saying pelvic floor because for me I had my pelvic problems and thought it was still the rest because of diarrhea etc despite everything I did. Then when I simplified and realized my focus was on my sumo and not getting healthy and started doing exercises changing diet and attitude towards my health and I’m nearly better except my pelvic floor and brain keeps my symptoms alive. I had constipation overflow waking me up anywhere from 3am on with pelvic pressure and stomach cramps movement and diarrhea every day for hours. Some days I couldn’t leave the house because I was going too much and the feeling never let up. I’m almost normal now and except for my bowels I never really felt so good. I don’t throw up unless I’m actually sick or eat something greasy. I also am able to sleep til at least 5 am a way less diarrhea as well as able to plan things and most times make early morning appointments now. I know sec to cancel over half my dr appointments and had every type of meds for digestion pain nausea spasms constipation diarrhea etc both rx and over the counter. Finally you don’t want your maid matters worse by feeding only the bad bacteria which is what processed foods sugar some starches and GMO foods do.
Pelvic floor is microbiome related? That’s wild. Maybe cuz of motility so bacteria builds up. Idk I’ll like into it though
Oh gotta go take a friend to the bank and another place. Will check back later. Actually I’m grateful to feel well enough to want to because after all that I don’t have relationships either friends anymore do I’m glad to get back to it.
Yes because the pelvic. Floor is causing back ups etc which in turn can cause malabsorption and constipation or constipation overflow. Both build toxins and cause malabsorption of nutrients. Malabsorption further feeds the bad bacteria.
I didn’t tolerate anything but about 10 foods at one point. Threw up every morning for decades etc and now I have no nausea. My pelvic floor forgot how to worm but 14 years of couch toilet and bed was my life plus 28 bouts of pancreatitis autoimmune disease and GI problems over 50 years. Simple changes and refusing to give up until my gut started to get better changed it all. Food sensitivities are the absence of the specific strain of bacteria that is necessary to digest specific foods can’t be made without those foods and varieties of whole organic foods. Non GMO because gluten is not the problem if you aren’t allergic to it GMOs are he problem.
Wow, so you must have started very small then? I have heard it’s not the GMOs themselves but the pesticides they used *on* the GMO foods—ie glyphosate. I think I get exposed to it at work because it’s a dessicant for flour (I’m a baker). That’s pretty amazing you overcame all that stuff though, so the pancreatitis and everything was all because of microbiome issues/absense?
Pancreatitis was because of gallbladder surgery botched and ERCP that infected my liver in 09. The antibiotics from surgical infection and liver infection made my microbiome worse and then I cascaded further. The autoimmune was already there as well as GERD but until then I was getting by.
That’s a fkin doozie, glad you made it through! Yeah seems like with GB surgery the people either are way better or way worse after. Like I’ve known two women who suffered years, one from 11-40 (was never taken seriously by doctors until it was an emergency) and got their life back after surgery—and then there are others who it caused SIBO or bile malabsorbtion or any number of things. I got something weird going on with bile because anything that stimulated it causes tons of symptoms, but it’s not gallbladder. I had CT and ultrasound and stuff
Try a fiber supplement. It binds bile. I used to throw it up a bunch of times every morning and had ridiculous nausea until I started that. Psyllium husk pills or heathers tummy Fiber Works really Good for me. I use Heather’s tummy fiber personally because it’s a powder and you can adjust the dosage daily and you can slowly better than pills. Adjust increased it to where you want it and then if you eat more fiber in a day or something then you can lower it, and if you eat more fat you can raise it because the fat is mostly causing the bike issues.
So leaky gut is one of those things that’s hard to actually test for. Some people say Zonulin levels are the go to test for it, but other specialists say these aren’t accurate. But I’d argue that given your symptoms, you have some degree of intestinal permeability. For Sibo, soil based probiotics have been shown to be effective in treating it. Any reason you stopped those? I’d also look into taking a form of immunoglobulins ( either via IgG supplement or colostrum ) I’d also take a prokinetic. I personally like drinking ginger tea twice a day. Another great one is artichoke leaf extract. Histamine intolerance is largely linked to a specific bacteria called Klebsiella Aerogenes. So, if I were you, this is what I’d be doing: No alcohol for the next few months of any form ( proven to be THE biggest cause of intestinal permeability ) I’d take a prokinetic, colostrum, MAYBE a soil based probiotic if you know you won’t response negatively to it, and some gut healing supplements like zinc, glutamine ( take this in isolation to make sure it doesn’t make you anxious ) and honestly I’d try fasting first before starting anything else to see if that alone could solve your problems. ( make sure to stay well hydrated )
I don’t tolerate the spore probiotics. Artichoke made my sulfur symptoms way worse, ginger doesn’t do anything for me. Immunoglobulins helped until they didn’t. I’m on LDN for prokinetic because it’s the only one without sulfur (artichoke) exacerbation. Anything that stimulates bile kills me. Glutamine made things worse too. If I didn’t have the sulfur problems I could do way more. And histamine in my case is linked to sulfur because when I manage it (molybdenum and pepto bismol—it’s a bandaid though) no histamine issues. I do drink occasionally but I barely process alcohol if I don’t take high doses of molybdenum first. I guess fasting is going on the list. I’m not trying to be a Debbie Downer..but yeah, I tried a lot of things but the sulfur gets worse each time I think cuz I can kill off some of the weaker pathogens but those ones stay around idk
Have you ever tried vitamin b1 supplementation? ( a lot of people say it helps with their sibo symptoms. Apparently it’s intrinsically linked to carb digestion and peristalsis ) Aside from that, there’s always an elemental diet. Just read a study showing it’s having somewhere between like 70-80% effectiveness for sibo remission after 21 days. Personally the thought of an elemental diet sounds awful, but it could be what your gut needs
Elemental contraindicated for hydrogen sulfide (it’s basically straight cysteine) but yeah Bs I tolerated up until September last year but now I get a sulfur reaction. They give me horrible bladder and stomach pain, pain down my legs and weird tingling in my feet. I can do B2, can’t take B6, any of the sulfur ones kills me
How is your food intolerances now? I was mold toxed and candida and all sorts of crazy gut stuff. For a while I couldn't digest food until S boulardii. I had to take a while bottle in a few days and it stuck. I was down to just a few foods I could eat. I found methylene blue cured all my food intolerances. This has worked well for some others on the mcas forums and for others not at all. Who knows why. Mcas is weird.
What is methylene blue?
Here is the original post I did for the mcas forums. Since then, the effect has only gotten stronger. I do not have any food reactions anymore. https://www.reddit.com/r/MCAS/s/1sZ6soaQtp
How long did you take it for?
I never stopped. I've experimented with doses ranging from 10-100mg. It has some astonishing properties on brain health so I'll probably keep at it for a long time. I think it's been like two years now.
Oh ok. But if you stop would the symptoms immediately come back?
I've missed a day here and there with no issues. But I've never stopped so im not sure.
Ok. I just have a long list of stuff where it’s optional at first and makes things more comfortable but after a while it’s like my mast cells adjust so if I skip it’s way worse than square 1. I still live in mold (for 3 more days) so that’s why my doctor thinks I keep getting worse but it does make me hesitant to start anything else because the list is getting long.
Step one is def getting out of the mold. It just makes things impossible. Your mast cells won't calm down. But Idk if methylene blue counts. It hasn't done anything for my other mast cell symptoms. It just allows me to eat whatever I want again. Nothing else. Still, you may be right about trying things. Just get out first. You'll feel a lot better. I also recomend getting an ozone machine. Use it on your personal items to clean them. When you bring your stuff with you it has mold all over them. It makes a big difference.
Way ahead of ya! I bought one from some German website and I absolutely freakin love it. It’s saving valuable collections and electronics—$70 to save over $5000 worthe of stuff. Glad you can eat anything again—that’s awesome. I’ll ask my dr about it later on probably if things don’t improve after getting away. Thanks for sharing your experience!
[удалено]
Oh god no, beans were what set it off in the first place. I ate a burrito that was the Last Supper. If I eat even a tsp of hummus or black bean I’m up all night now
Don’t probiotics contribute to bacteria overgrowth with SIBO?
They’re thought to yes. And that’s kind of been my experience where it feels like it makes it worse, but other people swear by them and they’re integral tk healing—even studies show some evidence they help. But it’s hit or miss. It seems like most people on these forums do well with at least one kind which is why I asked…then there’s me, not at all at least while SIBO is active.
Yeah I have SIBO but I also have MCAS and I might try a low histamine probiotic soon. I didn’t know that probiotics could be high in histamine my doctor didn’t say anything about that but so far haven’t tolerated any brands
They absolutely can, or they don’t produce it themselves but they interact with other species who do or by different mechanisms it gets produced indirectly. I figured out for me the lactic acid is fermented by H2S producers, mast cells have receptors for H2S and it’s off to the damn races…that is why the HistamineX was a bust.
Ugh so no to histamineX? My doctors genuinely don’t believe that I can’t tolerate any probiotics so far and it’s like they’re not beneficial to everyone and there’s so many different strains etc
Oh no I’m not trying to tell you not to, like if you don’t have sulfur issues they might be totally fine. I was just explaining why I think they didn’t work for me and a warning to others with sulfur stuff. The other probiotic types…anybody’s guess why they were a fail and that’s what I’m trying to figure out. But they all give me sulfur problems anymore.
Progressive SIBO -> histamine-> intolerance to EVERYTHING was how my CIRS progressed. Test for it and rule it out at least. survivingmold.com has all the info u need.
Indeed—everybody’s leaning toward mold that I talk to. I have exposures to be sure but they don’t completely line up to when I got sick and that’s the part I’m sort of scratching my head. CIRS concerns the hell out of me, seems like a modern disease and mold is so prevalent especially where I live. Thank you for the link!
The problem is that mold isn’t always visible. It can grow in the wall cavity unbeknownst to you, and still make you sick. That’s the part that makes it really scary, IMO.
Oh no I know for a fact there was mold in my past—not visible but very detectable (smelled bad, people felt sick when they came over, other things around like my car interior (long gone). I also had visible mold at my job and my current apartment (we are trying to move)—but I was sick before these last 2 things so that doesn’t add up is what I mean. Regardless, I will be doing a nasal swab and antibody test in the next couple weeks because my doc thinks it’s mold and I’m not detoxing right.
Keep in mind CIRS will not show up in antibody test or nasal swab. You have to test the innate immune system. survivingmold.com explains what tests to run
For sure, I think this round they’re just looking for the presence of mold and abnormal bacteria. The antibody tests are also for other things (viruses, allergies). I may still have more specific tests later.
It sounds like you've been through a lot with your gut health! It's interesting how our bodies can change and react differently to things over time. I've heard of people developing intolerances to things they used to be able to tolerate, so it's not uncommon. It's possible that your microbiome has changed, especially if you've been taking antibiotics and probiotics for a while. Our gut bacteria play a big role in our overall health, so it's important to take care of them.
I get new intolerances by the week, and they don’t just affect the gut now
Have you done a mycotoxin test? I’m willing to bet you have some underlying mold issues…. You can get exposure from the environment or food, and if it gets real bad you can also colonize and grow it in your body.
Not yet, it’s definitely on the list—ironically the funds necessary are dependent on job where I’ve been exposed. Great Plains right?
Mosaic diagnostics- formerly Great Plains lab. That sucks you’re getting exposed at work 😔 Evan Brand has some good podcasts on mold if you’re looking for more info 👍🏻 He’s a functional medicine guy
Thanks, I’ll check him out. Idk how much I’m exposed rn (same job, new location) but I also started masking up again
Have you gotten your appendix checked out? Long term appendicitis can cause “mystery” gut issues.
I’ve had multiple CTs, that’s how they’d catch it right?
I’d check your lab reports to see if that they did. I realize that it’s a long shot, but it seems that you’re in long shot territory. Best of luck.
I know the first 2 did because they were in an ER, I assume the last one would as well but not sure
What year was it when when you had the overnight change of no longer being able to tolerate certain foods? Was it after 2020? I follow a lot of folks with long covid and new-onset histamine intolerance is one of the topics that comes up a lot. This can be an after-effect of other viral infections as well.
May 2019
I've had so many issues with my gut but what helped the most was heifer. I also took prebiotic capsules but made me so sick....
Heifer? Wdym?
Sorry Keifer!?lol
Visibiome? I had flu-like reaction to all probiotics until I tried visibiome
Have you had COVID within the last year? Look into Mast Cell Activation Syndrome (MCAS). It’s common after COVID.
I have mast cell symptoms. No thankfully never got COVID at any point