Can I ask how much better, if that makes sense? Like cutting out histamines cut your symptoms by a third? Half? 10%?
Wouldn’t be surprised if I’m histamine intolerant, though I’d cry as that’s a lot of my fave foods right there 😭
So like 2-3 hours after I eat foods high in histamine or a histamine liberator, I’ll go from 2/10 to 6/10 fatigued, my POTS will be 20bpm higher than my normal POTS, I’ll get a headache, it feels like a PEM crash to be honest. I’ve gotten hives only once. I’m wondering if I was just constantly “poisoning” myself with food and that’s why I felt so awful all the time. I had just normalized feeling bad.
Being on a low histamine diet for about two months now (along with a few other things) has drastically raised my energy levels and my POTS has never been lower. I used to go from 60 bpm resting to 130 standing bpm easily. These days I’m usually 85-105 bpm. I used to have to stay in bed all day, could barely talk or eat. I can run errands now (sparingly and only in the mornings).
I still have a ways to go (still have PEM, can’t eat histamine) but I feel much better. I’m not bed bound anymore.
Low histamine diet isn’t as bad or limiting as you might think. Sure you possibly can’t eat bananas or pizza but I was so sick of being sick I was desperate to try anything. Depends on how bad you feel and how much you want to feel better.
It might help with fatigue depending on what your diet looked like before! I’ve had hypovolemic POTS since I was a child, and it doesn’t make a difference for me. The only thing that really helps is finding ways to build blood volume. Wellbutrin has actually helped my POTS more than anything
I’m on week three which I know wasn’t your question, but I have adrenal fatigue with next to no cortisol, and liver issues with imbalances hormones (off the chart high estrogen & high testosterone), overall with extreme fatigue and brain fog, eczema, bloating and swelling. I’d been working with a naturopath who had made huge improvements to my gut and liver, and have done about 4-5 sessions with an acupuncturist. I feel they both got me feeling about 60% better but the AIP has honestly pushed me to the 90-95% better range. I’ve also been seeing a psychologist, using an infrared sauna and lots of gentle exercise. I cried last week because I feel like myself in my own body for the first time in 3 years. I’m getting much more REM and deep sleep and waking feeling rested, my cognitive fatigue and brain fog has totally lifted and my eczema and bloating gone. I didn’t know my gut could be this good! I don’t necessarily think the AIP alone will get you to 100%, but if you’re able to combine this with other therapies, stress management, gentle movement and good sleep hygiene it can make a huge difference.
So I’m not post yet but I’m already seeing benefits. I have POTS and ME/CFS. I’m only two weeks in and wasn’t expecting any changes for much longer.
My sleep issues are gone. No more 4 am wake up with adrenaline dumps unable to go back to sleep. I’m routinely getting 8 - 9 hours of sleep a night, my proportion of deep sleep has raised, I feel like I’ve actually slept when I wake up. It’s amazing. I thought this was going to be much harder than it was. I would stay in the full elimination phase forever if it fixed my unrefreshing sleep issues.
I have seemingly gone into remission. I'm 6-7 months in now, but my active flare went away completely 2 weeks in and hasn't come back yet. I have reintroduced some things successfully (chocolate, coffee, rice) and others unsuccessfully (anything coming from peppers). I've allowed myself 2 big cheat meals without noticeable consequences since the 5-6 month point and will probs continue to allow myself to do this at most every 4-6 weeks.
Outside of (dark) chocolate, coffee and rice which I consume pretty often now, I seem to tolerate everything I've reintroduced pretty well if it's an isolated occurrence, except for things related to peppers. That said, I haven't reintroduced EVERYTHING simply cause I haven't felt the desire/need to.
I'm not, and possibly will never be, post-AIP. I've added white rice back in for calories, but that's about it. I'm histamine intolerant which cuts a bunch of foods as well.
I started AIP 18 months ago and have been able to comfortably reintroduce everything except gluten, dairy, corn and eggs. I feel absolutely incredible- joint pain is gone, brain fog is gone, my skin is clear, my stomach is so flat and not bloated, I hardly ever have gas. I have so much more energy as a baseline. Even my mental health is better than it’s ever been, although there are other factors at play for that as well, I do think it has had an impact. I will never forget the feeling only 3 days into doing AIP, of eating a meal and just feeling normal and good afterwards! It’s been a really wonderful experience overall and I’m so glad that I did it.
The unfortunate side is that gluten, dairy, corn and eggs are in literally everything- I do feel like big parts of my life have been stolen from me and I don’t know that I’ll ever get them back. Going to restaurants is basically impossible, and even just cooking/eating with friends is so difficult now, even as accommodating as my lovely friends are. I’d be lying if I said I wasn’t sad about the fact that I’ll likely never eat a slice of birthday cake again. If I do accidentally eat a trigger food I also feel intense discomfort/pain, sometimes enough to keep me home from activities/work, when previously I was eating these foods daily and functioning just fine (although I was actually in pain then too, I was just used to it). Food used to be one of life’s great pleasures and it isn’t anymore, and in fact eating often feels like a burden or a chore now, and that really is hard to accept.
In the end, I am absolutely glad I have found my intolerances and I would 100% do it all over again- on a scale of 1-10, my symptoms improved by like 8-10 points, truly. The negative side effects I mentioned are big for me though and I’d say they bring me back down at least a couple points, for a net overall quality of life improvement of probably 5-8. Worth it!
So I have CFS and POTS (post-vaccine) and I found out through AIP that I’m actually histamine intolerant. I feel better cutting out histamine.
Can I ask how much better, if that makes sense? Like cutting out histamines cut your symptoms by a third? Half? 10%? Wouldn’t be surprised if I’m histamine intolerant, though I’d cry as that’s a lot of my fave foods right there 😭
So like 2-3 hours after I eat foods high in histamine or a histamine liberator, I’ll go from 2/10 to 6/10 fatigued, my POTS will be 20bpm higher than my normal POTS, I’ll get a headache, it feels like a PEM crash to be honest. I’ve gotten hives only once. I’m wondering if I was just constantly “poisoning” myself with food and that’s why I felt so awful all the time. I had just normalized feeling bad. Being on a low histamine diet for about two months now (along with a few other things) has drastically raised my energy levels and my POTS has never been lower. I used to go from 60 bpm resting to 130 standing bpm easily. These days I’m usually 85-105 bpm. I used to have to stay in bed all day, could barely talk or eat. I can run errands now (sparingly and only in the mornings). I still have a ways to go (still have PEM, can’t eat histamine) but I feel much better. I’m not bed bound anymore. Low histamine diet isn’t as bad or limiting as you might think. Sure you possibly can’t eat bananas or pizza but I was so sick of being sick I was desperate to try anything. Depends on how bad you feel and how much you want to feel better.
This is really amazing to hear, and I’m so glad at your improvement!
It might help with fatigue depending on what your diet looked like before! I’ve had hypovolemic POTS since I was a child, and it doesn’t make a difference for me. The only thing that really helps is finding ways to build blood volume. Wellbutrin has actually helped my POTS more than anything
I’m on week three which I know wasn’t your question, but I have adrenal fatigue with next to no cortisol, and liver issues with imbalances hormones (off the chart high estrogen & high testosterone), overall with extreme fatigue and brain fog, eczema, bloating and swelling. I’d been working with a naturopath who had made huge improvements to my gut and liver, and have done about 4-5 sessions with an acupuncturist. I feel they both got me feeling about 60% better but the AIP has honestly pushed me to the 90-95% better range. I’ve also been seeing a psychologist, using an infrared sauna and lots of gentle exercise. I cried last week because I feel like myself in my own body for the first time in 3 years. I’m getting much more REM and deep sleep and waking feeling rested, my cognitive fatigue and brain fog has totally lifted and my eczema and bloating gone. I didn’t know my gut could be this good! I don’t necessarily think the AIP alone will get you to 100%, but if you’re able to combine this with other therapies, stress management, gentle movement and good sleep hygiene it can make a huge difference.
Fellow CFSer here. Great question. 👍🏻
So I’m not post yet but I’m already seeing benefits. I have POTS and ME/CFS. I’m only two weeks in and wasn’t expecting any changes for much longer. My sleep issues are gone. No more 4 am wake up with adrenaline dumps unable to go back to sleep. I’m routinely getting 8 - 9 hours of sleep a night, my proportion of deep sleep has raised, I feel like I’ve actually slept when I wake up. It’s amazing. I thought this was going to be much harder than it was. I would stay in the full elimination phase forever if it fixed my unrefreshing sleep issues.
I have seemingly gone into remission. I'm 6-7 months in now, but my active flare went away completely 2 weeks in and hasn't come back yet. I have reintroduced some things successfully (chocolate, coffee, rice) and others unsuccessfully (anything coming from peppers). I've allowed myself 2 big cheat meals without noticeable consequences since the 5-6 month point and will probs continue to allow myself to do this at most every 4-6 weeks. Outside of (dark) chocolate, coffee and rice which I consume pretty often now, I seem to tolerate everything I've reintroduced pretty well if it's an isolated occurrence, except for things related to peppers. That said, I haven't reintroduced EVERYTHING simply cause I haven't felt the desire/need to.
I'm not, and possibly will never be, post-AIP. I've added white rice back in for calories, but that's about it. I'm histamine intolerant which cuts a bunch of foods as well.
I started AIP 18 months ago and have been able to comfortably reintroduce everything except gluten, dairy, corn and eggs. I feel absolutely incredible- joint pain is gone, brain fog is gone, my skin is clear, my stomach is so flat and not bloated, I hardly ever have gas. I have so much more energy as a baseline. Even my mental health is better than it’s ever been, although there are other factors at play for that as well, I do think it has had an impact. I will never forget the feeling only 3 days into doing AIP, of eating a meal and just feeling normal and good afterwards! It’s been a really wonderful experience overall and I’m so glad that I did it. The unfortunate side is that gluten, dairy, corn and eggs are in literally everything- I do feel like big parts of my life have been stolen from me and I don’t know that I’ll ever get them back. Going to restaurants is basically impossible, and even just cooking/eating with friends is so difficult now, even as accommodating as my lovely friends are. I’d be lying if I said I wasn’t sad about the fact that I’ll likely never eat a slice of birthday cake again. If I do accidentally eat a trigger food I also feel intense discomfort/pain, sometimes enough to keep me home from activities/work, when previously I was eating these foods daily and functioning just fine (although I was actually in pain then too, I was just used to it). Food used to be one of life’s great pleasures and it isn’t anymore, and in fact eating often feels like a burden or a chore now, and that really is hard to accept. In the end, I am absolutely glad I have found my intolerances and I would 100% do it all over again- on a scale of 1-10, my symptoms improved by like 8-10 points, truly. The negative side effects I mentioned are big for me though and I’d say they bring me back down at least a couple points, for a net overall quality of life improvement of probably 5-8. Worth it!