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I forgot about this thread. I've found another solution that has really helped. I'm low in copper. Taking copper has improved much of my symptoms. Copper breaks down histamine, and I believe that is why it's helped.
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I had high histamine as well, and follow a low histamine diet now.
I used to be unable to fall asleep if I had eaten the wrong type of food or had something with alcohol in it, which is very high in histamine. For me there 'definitely' a strong link between histamine and problematic sleep. (also between histamine and stomach/bowel problems).
I have always been someone to avoid alcohol almost 100%, even when I was young. But when I met my current partner it changed. He sometimes puts a lot of effort in creating a really nice dinner, and sometimes had some type of wine to go with it. I enjoyed that too, so that is where I started drinking alcohol sometimes. I quickly found out that wine (alcohol) causes me to be completely and utterly unable to sleep.
A doctor specialized in allergies, did not find any specific allergies but she did find I had high histamine, and advised a very strict low histamine diet.
Since then, I do not have insomnia anymore, unless I cheat and eat or drink something with lots of histamine in it. Alcohol is by far the worst one for me, it is really high in histamine.
A glass of wine will give instant insomnia. Its such a strong effect that I 'could' use it if I want to stay very awake for the whole night, I could eat histamine on purpose. It would work. (and would also have a bit too many downsides )
But insomnia can also happen when I eat several types of food with lower amount in it, it just stacks up.
I do not know why I have high histamine, and why my body does not seem to be able to clear it very well. I have thought about the link with cortisol before, but so far there has not been any doctor who is willing to test or explore it.
I have found that nettle tea can sometimes help in a mild way, not much but I still use it. I read somewhere that nettle helps to break it down, like a natural antihistamine. So maybe you could try drinking several cups of a good nettle tea throughout the day, and some more in the evening. Maybe for 'at least' three days to give it a chance of lowering the histamine stack (that is what I call it now)
Its probably not strong enough, but it doesn't hurt to try I guess.
And I would definitely stay away from alcohol.
Itchy eyes is low B2 for me. Unfortunately if I take a bit of B2 I get exacerbation of symptoms and need to keep upping B2, which I can't because I get low iron and the whole cascade.I have very very itchy eyes. Perhaps just spring allergies but I have signs of SIBO too.
I am still having issues even with a low histamine diet. As far as I can tell there are a at least a few things that can cause a histamine issue
1) Low methylation
2) Low cortisol
3) High histamine diet
4) Dysbiosis
5) Low DAO (try a DAO supplement)
I don't think a permanent low histamine diet is a great idea as you will still probably have the underlying issue.
I would keep it up as long as you need to but would look into the above issues.
Have you had a stool test? I have pretty bad dysbiosis and that is at least part of my problem .
I tend towards Candida and in efforts to knock that lower I have taken some herbals that totally messed up my gut. I seem to be lacking a good mucous barrier in stomach and gut. I also am very low SIgA which is the immune response in the gut. I am starting back on l-glutamine and zinc carnosine as they helped me before.
Let me know how probiotics works for you they haven't seemed helpful to me. I am using GOS and another fiber that supposedly only help good bacteria. I am also taking butyrate which I think also only helps good bacteriaStill I think that using the right probiotics might be the answer or part of the answer. Histamine degrading ones. I really need to do the research.
1) Low methylation - my doctor wants me to retest homocysteine to help determine methylation status. Or do the methylation test at @$300
2) Low cortisol - Really? I think my cortisol is often high.
I am not sure if DAO is helping me. I had given up on it due to it's less than stellar performance and high cost. My naturopath had me restart it at two pills per meal. It might be helping some.5) Low DAO (try a DAO supplement) I am trying this and it may be helping. How many per day are you taking? I read that 90% of people with migraine have low DAO and I have had a huge problem with migraines earlier in my
life. That is why I have avoided fermented foods and leftovers. I also have a + - on the DAO snp on 23andme.
However...here is interesting research...
http://alisonvickery.com.au/the-histamine-intolerance-and-diamine-oxidase-connection/
I had a blood test and it seemed fine. I am not sure how accurate they are maybe your naturopath knows.I'm thinking I should have my histamine levels checked. Have either of you done that? Blood test? I've been assuming that it is an allergy that I am dealing with but could be totally wrong. If allergy, environmental or from the gut?
While I tend to agree with this sentiment (I've had little allopathic help) and Endocrinologist should cost much less than a naturopath,etc. If you think you have a cortisol or blood sugar issue a good Endocrinologist could be helpful. If you have insurance it's probably worth doing just to rule things out.I am so sorry Julia that you have had such bad luck with doctors. I doubt that an endocrinologist will be any better. I think what I/we need is a functional medicine doctor....mostly found in the natural medicine circles.
IA heart rate montior and my observation seems to indicate pretty clearly that histamine is a problem for me.
I have POTS as well. I probably have dysautonomia as well. Long term use of steroids (that's what I was perscribed and what I assume you were as well) can cause problems. I would try to supplement them with salt and adrenal supports. I don't know if an Endo is likely to help you here, but I really think that you should give it a shot if you can.I myself suspect its cortisol. I asked if it could be checked when I talked to my current doctor last time, which is a neurologist that I respect. But he also decided that it was not useful to search any further for the reasons of my troubles. I have pots like symptoms too, often lowish blood pressure readings and narrow pulse pressure. He was the one that agreed to do a tilt table test, I am grateful about that (very).
But he did not look into the 'why' of that either. Only the tilt table test was done and a very quick sweat test. He prescribed medication for my blood pressure.
I think that cortisol lowers insulin (or was that sugar?). Have you had a fasting glucose or HGA1C?I think I have glucose/insulin problems too because I have really strong reactions to breakfast. I often become so sleepy that I fall asleep for hours. Right before breakfast I feel sort of ok, after, my head just goes into a coma. If I do not eat, I feel 'way' better. This could also be cortisol related I think. Because it regulates blood sugar (if I understand it right).
@heyitisjustin Are you only using GOS and the other fiber? They are not probiotics, I think. There is a list of probiotics that increase histamine and those that degrade it. If I find it I will post.I
Let me know how probiotics works for you they haven't seemed helpful to me. I am using GOS and another fiber that supposedly only help good bacteria. I am also taking butyrate which I think also only helps good bacteria
The $300 is for the Methylation panel. I think the homocysteine test is @85. My insurance does not pay for either.
@heyitisjustin Are you only using GOS and the other fiber? They are not probiotics, I think. There is a list of probiotics that increase histamine and those that degrade it. If I find it I will post.
Thanks @heyitisjustin Actually the prebiotics are not good for those with SIBO. They feed the problem. I have figured out some probiotics that are histamine degrading but more importantly need to increase DAO. Took several yesterday and felt much less itchy.GOS and arabinogalactan are prebiotics. You might want to search the amazon reviews for them and see if they make sense for you (e.g. if anyone with SIBO had good results).
The low histamine chef has a probiotics list that seemed pretty good
I take a few probiotics, but they don't seem super helpful. I am taking
Lactobacillus rhamnosus, Lactobacillus Plantarum, a bifio complex, Prescript Assist and possibly a couple more
That sounds great! Which probiotics seem to be helping?Thanks @heyitisjustin Actually the prebiotics are not good for those with SIBO. They feed the problem. I have figured out some probiotics that are histamine degrading but more importantly need to increase DAO. Took several yesterday and felt much less itchy.
I haven't tried them yet but according to the fellow on selfhacked website these are the ones that DegradeThat sounds great! Which probiotics seem to be helping?
I haven't tried them yet but according to the fellow on selfhacked website these are the ones that Degrade
B infantis - Align
B longum - essential Probiotics also has H Helveticus and L Rhamnosus and I don't know if they are good or bad
L plantarum - Swanson
Ones to avoid...
L casei
L reuteri
L bulgaricus
I have been using Lactobif for the past 2 weeks as I've been having an oxalate problem and it helps that. It contains:
a Probiotic Bacteria Blend of:
30 Billion CFU †
Composed of the following strains:
Lactobacillus acidophilus (La-14)
Bifidobacterium lactis (BI-04)
Lactobacillus rhamnosus (Lr-32)
Lactobacillus plantarum (Lp-115)
Bifidobacterium longum (BI-05)
Bifidobacterium breve (Bb-03)
Lactobacillus casei (Lc-11)
Lactobacillus salivarius (Ls-33)
However, I see now that it contains...l casei. As for the beneficial, it has B longum and L plantarum.
I would like to know more and just need to find the time to do the research! Would appreciate any insights others have.