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Histamine Intolerance and SIBO

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Hi all,

This is my first time posting on the forum. I've had CFS for around 4 years. (No formal diagnosis, but relate heavily to the symptoms and am currently a patient with a CFS clinic in london) I just want to say hello! I have been a bit of a lurker for a while, and thought it was time to start posting - although I most likely won't be on here too much due to avoiding EMF's. (YOU KNOW THE STRUGGLE.)

I wanted to chat to you guys about histamine intolerance, as this has been a particular stand out symptom of mine of recent. I've been alcohol intolerant since as long as I can remember, I'd say 5 years. When I first started drinking it was I think the first 2 years I was fine and then got alcohol intolerant. (Although I am an introvert and have never drank much) A year ago something terrible happened, I developed histamine intolerance to both caffeine AND chocolate. I tried chocolate three times during that time and all of those times ended up in hospital. I also have a leaky heart valve and possible mitral valve prolapse which likely does not make the histamine situation any better. (Oh, how cruel life is..)

I've had SIBO for two years, currently seeing a nutritionist and will start herbals soon. I read sibo can cause histamine intolerance and wanted to ask if any of you have ANY experience with this symptom or of beating it? It seems primarily to do with methalyation pathways?

Earlier I had chicken provinical which had white wine in it by accident - such a mistake. Even alcohol that has been cooked out causes these symptoms! Even if I beat the sibo, I honestly think the issue of histamine intolerance might never go away.

Anyway, would love to know your experiences and lovely to meet you all. I'll be posting on the forum any useful bits that I have learned from this horrendous condition.
 

PinkPanda

Senior Member
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Welcome!
Vitamin B2/ riboflavin helped me a lot with my histamine symptoms. Vitamin B2 is needed for the monoamineoxidase (MAO), which breaks down amines and vitamin B2 is a cofactor for the MTHFR enzyme in the methionine cycle.
Too much B2 caused me anxiety though.

HydroxoB12 helps me in general and might reduce histamine because it can be converted to methylB12 for the methionine cycle.
 

ryan31337

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Hi @Thrive,

Breath test confirmed SIBO here with apparent histamine intolerance. I did a course of rifaximin & herbal antimicrobials, complete with dietary restriction. Repeat breath test appeared to show resolution of SIBO but still an abnormally large late gas peak so was told dysbiosis/leaky gut/whatever remained - frankly I'm not that confident about breath testing in general...

From the SIBO side of things I get symptom relief by following a very low carbohydrate diet (ketogenic).

From the histamine point of view I get some improvement by following a low histamine diet. If I have been more active, eating will generally trigger symptoms even from normally 'safe' lower histamine meals. I have found that taking DAOSiN (diamine oxidase supplement) before meals appears to raise my threshold for symptom breakthroughs.

I would look very closely not only at the foods you consume but also their preparation and storage. For instance I cannot eat slow cooked foods, nor can I tolerate any sort of left-overs. Some foods can apparently promote histamine production too, so you end up with more delayed onset symptoms. Chocolate falls into this category for me, if I eat it at dinner time I will wake up with itching and hives in the middle of the night (instead of an immediate reaction).

I am experimenting with related meds now including Quercetin and antihistamines. Anything effecting histamine level also seem to effect my migraine frequency and severity.

Ryan
 

ljimbo423

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Repeat breath test appeared to show resolution of SIBO but still an abnormally large late gas peak so was told dysbiosis/leaky gut/whatever remained -
Hey Ryan- Could the late gas peak be from dysbiosis in the colon? I've been working on SIBO with diet, rifaximin and herbals for about 9 months and have made big progress.

I just can't shake the feeling that I have dysbiosis/leaky gut in the large intestine also. What are your thoughts on dys./leaky gut in the large intestine? Have you considered this?

Jim
 

Timaca

Senior Member
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I've had CFS since 2003. In 2012 I put myself on an elimination diet (not thinking I had food intolerance issues) and low and behold it seems I have multiple food intolerance issues! Including, I think, histamine and quite possibly benzoates. I can eat foods on the higher histamine food list (in small quantities), except animal protein. I can't eat that at all, unless it is very fresh fish, otherwise I get a severe headache and itchiness.

I can eat legumes (even soy--but I eat that in limited quantities), most vegies, most fruits except berries (I suspect benzoates but am not sure), sweet potatoes and rice (the only grain I seem to be able to eat). I continue to try to test various foods in the hopes that I can tolerate more foods.

I have a blog that discusses this.

I am feeling the best in the 14 years of my illness. I know that viruses play a role in how I feel (seen it in the labs and my symptoms). Food is also a factor. I think the viruses set off all these food intolerance problems.

Good luck figuring it out. From my experience, it isn't just a histamine intolerance....it is multiple food issues....sigh. Well, if I win the lottery, I'll find someone to help us figure it out! ;)

Best,
 

ryan31337

Senior Member
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Hey Ryan- Could the late gas peak be from dysbiosis in the colon? I've been working on SIBO with diet, rifaximin and herbals for about 9 months and have made big progress.

I just can't shake the feeling that I have dysbiosis/leaky gut in the large intestine also. What are your thoughts on dys./leaky gut in the large intestine? Have you considered this?

Jim
Hi Jim,

Congrats on the progress! Yes, dysbiosis/leaky gut and colon involvement was my docs suspicion after seeing the SIBO retest go negative without any improvement in general symptoms. Though in fairness I've not reintroduced carbs or FODMAPs at all so perhaps the worst of the SIBO-associated symptoms wouldn't come back now if I did.

My doc wanted me to carry on with different herbals but I have parked that for a while. My GI symptoms are manageable on the highly restricted ketogenic diet with DAOSiN supplementation and I got my foot in the door with a muscle disease specialist who is investigating me for neuromuscular & metabolic diseases - I can only cope with (and afford!) so much at a time.

Ryan