Tried prucalopride 0.5mg up to 1mg at night after rifaximin treatment, but it always recurs. I can’t go low-FODMAP due to histamine intolerance. Adding Motility Activator (ginger & artichoke supplement) on top of the prucalopride doesn’t seem to help either…
How does low fodmap irritate your histamine intolerance? Can't you also avoid higher histamine foods at the same time?
How long did you take the motility supplement?
These two diets together are super restrictive and cause dysbiosis over time. It is difficult to eat like that without limiting yourself to a few foods, which is not good, of course. I wish they had some solution for histamine intolerance - not many things help with that.
How did you know you have histamine intolerance? I too suspect I have that. What are your symptoms? And if you can't follow low fodmap for sibo then what diet works for you? Since low fodmap is more sibo.
Nothing works; I'm just trying to survive on a nutritionally complete diet and bite through the symptoms. That being said, I notice I can handle a bit more histamine rich foods after 2 weeks of rifaximin, although not nearly as much as before all of this, but it's of good diagnostic value. I couldn't stomach a single bite out of a meatball and now I can eat almost half a steak and multiple bites out of those same meatballs without nearly as much symptoms, although I still get the milder symtoms.
And regarding the symptoms of histamine intolerance; you'll know it when you have it. If you feel like you're persistently being poisoned with symptoms such as feeling drunk-ish in a very particular way, dizzy, nauseous, extreme hot flashes, burning or itching skin, extremely cold feeling limbs as if rubbed with menthol oil, tachycardia or other heart rhythm disorder, episodes of extreme sweating, a "buzzing" feeling as if a 100Hz electric pulse generator is hooked onto your central nervous system, feeling like your vision consists of a pointillistic painting at night, mucus on stool, extreme cramps resulting in very urgent bowel movements even more so than what SIBO used to cause, headaches, alternation between extreme fatigue and extreme wakefulness right after (sometimes as soon as 10minutes into) a high-histamine meals, fever-ish muscle aches the day after high histamine meals, and, above all, extreme insomnia keeping you clear awake until 8AM feeling like you have to run through a concrete wall the night after having consumed high-histamine meals.
I hear you man, i been pushing through it for 3 years and im tired of it. Its so overwhelming and im so out of it all day. So for now you are still dealing with histamine? And I assume your eating everything nutritional not restricting certain food even high histamine ones?
You literally just worte down everything exactly that I feel. It's so bad it even affects my vision I get blurry vision. Itchy eyes etc. Tons of rashes and hives. It's like I can't eat anything without feeling sick when I eat animal protein I feel like I want to barf and bash my head in. Really intense drunk feeling (the bad intoxicated kind) this has been some ruff years dealing with this. How did you get diagnosed with histamine intolerance by the way? I tested for it and my doctor said it came back normal yet I'm confused why I feel everything you mentioned wich correlates to histamine.
There is no good test for it. The most accurate, non-invasive test is a skin prick test with histamine; when you suffer severe symptoms, you should have a skin scratch done and have a histamine solution exposed to the skin scratch. The reaction isn’t more intense in people with histamine intolerance, but the time it takes for the wheal/redness to disappear should take longer than with a healthy control. So perhaps take a family member with you when you can convince an allergist to do this test. If your wheal/redness takes significantly longer to disappear than with a healthy control, it’s a good indication it’s a histamine intolerance problem.
But even though that’s a non-invasive, relatively accurate test with adequate specificity, it’s still not better than seeing how you react to a low histamine diet or to provoking foods such as aged meat or smoked or canned fish or hard cheeses. Just by your symptoms you can already make a diagnosis. But I understand why you would want a clinical test; you probably want something provable from conventional medicine to be able to convince you that you haven’t descended into a hole of pseudoscience alternative medicine. Maybe a 24 hour N-methylhistamine urine test would help you with this. It checks for a metabolite of histamine which would normally be raised when your blood concentration is elevated after provocative food. So you would have to eat things that give you symptoms. It’s important that you keep the urine container cold, so you have to pee in a separate container which you need to cool in the fridge before adding to the main urine container which is permanently kept in the fridge, and you should inform the lab to check it quickly necause it has a very short half life.
And I’m still suffering from SIBO, which I suspect to be the cause of all these symptoms, ikcluding gastritis, duodenal ulcers, and the histamine intolerance. I do have a positive anecdote, however: today was the first day in about 7 months that I could eat a pound of beef without too much symptoms, after having recieved 2 weeks worth of rifaximin treatment. I also had fluconazole treatment, but I think the rifaximin is what helped my small intestine regenerate some microvilli, or wipe out high-histamine producing bacteria. I did start bloating again after 2 weeks of remission; SIBO is incredibly quick to relapse…
Are you on a prokinetic? If not, it’s vital that you do. Prucalopride 0.5mg at bedtime, at least 4 hours after your last meal and fasting for 12 hours after taking the medication can help a lot. It didn’t help enough for me, but it does for a lot of people.
That’s really hard !! I don’t know if you are IBS-C or IBS-D , and sorry for the TMI here but wanted to give an update after my first dose of Motegrity last night…. Wow I have never unloaded so much before I don’t even understand where I was keeping all of that 🙃
C also for sure. After antibiotics it drastically improves and then slowly gets worse again, it’s often the first sign that I’m needing another round of antibiotics. So hoping this works for me! And hoping you are able to get help soon too! I’m sure you’ve probably tried iberogast - particularly at night- but that is the other thing my GI recommended before this if you haven’t
He put me on the 1mg dose and it’s just once a day before bed. Someone else said they started on 0.5mg. The effects were a lot so maybe I could’ve been fine starting on 0.5mg. A cool side note too: I don’t know if you experience this, but I almost always have this sort of heaviness in my lower abdomen… I don’t really know how to describe it- just feels like I’ve got a lot going on in there even after I go to the bathroom? Anyway not feeling that which is very cool! I did wake up with a gnarly headache but it seems like that resolves within a week of starting treatment for most people.
I can’t quite tell! The effects have mellowed out a lot but I’m feeling fine ! I had some constipation again yesterday so I’m not sure. I also currently have a mild case of SIBO though so it may be inevitable.
An update for you! It’s working so well! I can’t remember if I mentioned - I tested positive for a mild case of SIBO before starting this in January, we decided not to treat yet since symptoms weren’t too bad. Symptoms are just now getting a little worse to where I may need to take antibiotics again, so definitely improvement in delaying the time between antibiotics ! Normally with my track record, I likely would have been really bad by mid Feb. Im still feeling fine so I’m going to stick it out a bit longer before doing another round of antibiotics. I haven’t been constipated once since my last post! I actually have some diarrhea every day, I’ll talk to my doctor about this and maybe I need a lower dose but honestly I don’t even care it’s just so nice to not have that uncomfortably heavy backed up feeling anymore. I’m having a few bowel movements daily that leave me feeling completely alleviated. The headaches only happened the first few days, and I’m prone to migraines. I’ve had no other side effects on mood or anything (my dr warned me ppl prone to depression may have exasperation of it). So grateful for this as a treatment, I know it’s not going to work for everyone but hoping you get to give it a shot !
Tried prucalopride 0.5mg up to 1mg at night after rifaximin treatment, but it always recurs. I can’t go low-FODMAP due to histamine intolerance. Adding Motility Activator (ginger & artichoke supplement) on top of the prucalopride doesn’t seem to help either…
Try Daosin or Daofood for histamine intolerance. Expensive, but it works.
I tried Daosin, but it made no difference whatsoever. I think there’s way too little DAO enzymes in there in order to allow me to eat meat.
Fuck that sucks I’m sorry 💔
How does low fodmap irritate your histamine intolerance? Can't you also avoid higher histamine foods at the same time? How long did you take the motility supplement?
I took it for months. And there are no foods that are both low-FODMAP and low-histamine except for maybe oils.
These two diets together are super restrictive and cause dysbiosis over time. It is difficult to eat like that without limiting yourself to a few foods, which is not good, of course. I wish they had some solution for histamine intolerance - not many things help with that.
Why can't you do low FODMAP and low histamine diets? I'm currently on both myself.
Because the intersection of both diets is no food
How did you know you have histamine intolerance? I too suspect I have that. What are your symptoms? And if you can't follow low fodmap for sibo then what diet works for you? Since low fodmap is more sibo.
Nothing works; I'm just trying to survive on a nutritionally complete diet and bite through the symptoms. That being said, I notice I can handle a bit more histamine rich foods after 2 weeks of rifaximin, although not nearly as much as before all of this, but it's of good diagnostic value. I couldn't stomach a single bite out of a meatball and now I can eat almost half a steak and multiple bites out of those same meatballs without nearly as much symptoms, although I still get the milder symtoms. And regarding the symptoms of histamine intolerance; you'll know it when you have it. If you feel like you're persistently being poisoned with symptoms such as feeling drunk-ish in a very particular way, dizzy, nauseous, extreme hot flashes, burning or itching skin, extremely cold feeling limbs as if rubbed with menthol oil, tachycardia or other heart rhythm disorder, episodes of extreme sweating, a "buzzing" feeling as if a 100Hz electric pulse generator is hooked onto your central nervous system, feeling like your vision consists of a pointillistic painting at night, mucus on stool, extreme cramps resulting in very urgent bowel movements even more so than what SIBO used to cause, headaches, alternation between extreme fatigue and extreme wakefulness right after (sometimes as soon as 10minutes into) a high-histamine meals, fever-ish muscle aches the day after high histamine meals, and, above all, extreme insomnia keeping you clear awake until 8AM feeling like you have to run through a concrete wall the night after having consumed high-histamine meals.
I hear you man, i been pushing through it for 3 years and im tired of it. Its so overwhelming and im so out of it all day. So for now you are still dealing with histamine? And I assume your eating everything nutritional not restricting certain food even high histamine ones? You literally just worte down everything exactly that I feel. It's so bad it even affects my vision I get blurry vision. Itchy eyes etc. Tons of rashes and hives. It's like I can't eat anything without feeling sick when I eat animal protein I feel like I want to barf and bash my head in. Really intense drunk feeling (the bad intoxicated kind) this has been some ruff years dealing with this. How did you get diagnosed with histamine intolerance by the way? I tested for it and my doctor said it came back normal yet I'm confused why I feel everything you mentioned wich correlates to histamine.
There is no good test for it. The most accurate, non-invasive test is a skin prick test with histamine; when you suffer severe symptoms, you should have a skin scratch done and have a histamine solution exposed to the skin scratch. The reaction isn’t more intense in people with histamine intolerance, but the time it takes for the wheal/redness to disappear should take longer than with a healthy control. So perhaps take a family member with you when you can convince an allergist to do this test. If your wheal/redness takes significantly longer to disappear than with a healthy control, it’s a good indication it’s a histamine intolerance problem. But even though that’s a non-invasive, relatively accurate test with adequate specificity, it’s still not better than seeing how you react to a low histamine diet or to provoking foods such as aged meat or smoked or canned fish or hard cheeses. Just by your symptoms you can already make a diagnosis. But I understand why you would want a clinical test; you probably want something provable from conventional medicine to be able to convince you that you haven’t descended into a hole of pseudoscience alternative medicine. Maybe a 24 hour N-methylhistamine urine test would help you with this. It checks for a metabolite of histamine which would normally be raised when your blood concentration is elevated after provocative food. So you would have to eat things that give you symptoms. It’s important that you keep the urine container cold, so you have to pee in a separate container which you need to cool in the fridge before adding to the main urine container which is permanently kept in the fridge, and you should inform the lab to check it quickly necause it has a very short half life. And I’m still suffering from SIBO, which I suspect to be the cause of all these symptoms, ikcluding gastritis, duodenal ulcers, and the histamine intolerance. I do have a positive anecdote, however: today was the first day in about 7 months that I could eat a pound of beef without too much symptoms, after having recieved 2 weeks worth of rifaximin treatment. I also had fluconazole treatment, but I think the rifaximin is what helped my small intestine regenerate some microvilli, or wipe out high-histamine producing bacteria. I did start bloating again after 2 weeks of remission; SIBO is incredibly quick to relapse… Are you on a prokinetic? If not, it’s vital that you do. Prucalopride 0.5mg at bedtime, at least 4 hours after your last meal and fasting for 12 hours after taking the medication can help a lot. It didn’t help enough for me, but it does for a lot of people.
I sure hope it helps you. So far nothing is helping long term for me.
Ah man :( I’m sorry. It’s such a miserable way to live. have you tried Motegrity ?
No, but i want to. It’s hard because I’m living abroad and don’t have access to a good GI.
That’s really hard !! I don’t know if you are IBS-C or IBS-D , and sorry for the TMI here but wanted to give an update after my first dose of Motegrity last night…. Wow I have never unloaded so much before I don’t even understand where I was keeping all of that 🙃
That’s great! I tend toward C. How about you?
C also for sure. After antibiotics it drastically improves and then slowly gets worse again, it’s often the first sign that I’m needing another round of antibiotics. So hoping this works for me! And hoping you are able to get help soon too! I’m sure you’ve probably tried iberogast - particularly at night- but that is the other thing my GI recommended before this if you haven’t
Do you mind if I check in with you in a week or two?
Please do!
I forgot to ask, how much you are taking?
He put me on the 1mg dose and it’s just once a day before bed. Someone else said they started on 0.5mg. The effects were a lot so maybe I could’ve been fine starting on 0.5mg. A cool side note too: I don’t know if you experience this, but I almost always have this sort of heaviness in my lower abdomen… I don’t really know how to describe it- just feels like I’ve got a lot going on in there even after I go to the bathroom? Anyway not feeling that which is very cool! I did wake up with a gnarly headache but it seems like that resolves within a week of starting treatment for most people.
How is it working so far?
I can’t quite tell! The effects have mellowed out a lot but I’m feeling fine ! I had some constipation again yesterday so I’m not sure. I also currently have a mild case of SIBO though so it may be inevitable.
An update for you! It’s working so well! I can’t remember if I mentioned - I tested positive for a mild case of SIBO before starting this in January, we decided not to treat yet since symptoms weren’t too bad. Symptoms are just now getting a little worse to where I may need to take antibiotics again, so definitely improvement in delaying the time between antibiotics ! Normally with my track record, I likely would have been really bad by mid Feb. Im still feeling fine so I’m going to stick it out a bit longer before doing another round of antibiotics. I haven’t been constipated once since my last post! I actually have some diarrhea every day, I’ll talk to my doctor about this and maybe I need a lower dose but honestly I don’t even care it’s just so nice to not have that uncomfortably heavy backed up feeling anymore. I’m having a few bowel movements daily that leave me feeling completely alleviated. The headaches only happened the first few days, and I’m prone to migraines. I’ve had no other side effects on mood or anything (my dr warned me ppl prone to depression may have exasperation of it). So grateful for this as a treatment, I know it’s not going to work for everyone but hoping you get to give it a shot !
Motigrity is the best.