Histamine intolerance/sensitivity with Hashi's ... - Thyroid UK

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Histamine intolerance/sensitivity with Hashi's and thyroid plus fluid retention.

kaylee4848 profile image
37 Replies

I joined this group because I was having fluid retention and found many people had the same problem using their sleep apnea machine. In the last two weeks I have proved the docs wrong and that yes the machine does cause fluid retention - three of the main reasons are thin veins/capillaries, low albumin AND people with Hashi's/thyroid often are histamine sensitive. I had every allergy test done, but all negative, just a slight showing in bloodwork. Turns out we often are low in DAO which is the enzyme in the body that breaks down histamine. Often we do not have enough DAO and build up a huge intolerance to foods, drugs and supplements that are high in histamine. WHAT an eye opener, so I have been researching away, I have all the symptoms - I had nasal surgery in 2015, but the ENT could not figure out why or what I was allergic too that caused me to be a mucous factory, little did I know I also had all these other symptoms that went along with the mucous factory - he said it would all come back within two years of cleaning me out - he was correct. WHY he didn't know about people being histamine sensitive is well another story, but no doc has ever mentioned this. I am now taking DAO, and started eliminating as much high histamine foods and drugs etc. from my diet. Some of the foods are the VERY same foods we are told to eat to HELP our Hashi's like kefir and other fermented foods, quite a few fruits and veggies, especially the nightshade family are on this list, and sorry to say but fermented drinks are as well - as in wine and most alcohol. GOOD NEWS most people only have to take the DAO and stay on the diet for a few months and then can start adding slowly the foods they missed the most and see if there is a reaction.

I would LOVE to hear from any others that have done this diet and taken DAO. My biggest confusion is: SO many histamine food list contradict one another, one list will say cherries, peaches and mango ok, and the next list says NO! this goes on from site to site. My other good news is that I may have found a functional medicine doc here in France, see him on Thursday so hope he will supply more information.

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kaylee4848
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radd profile image
radd

kaylee4848,

Histamine isn’t all bad as required to help fight off infections, secrete gastric acid, regulate sleep, etc but if excessive we get itching/swelling eyes & nose, post nasal drip, headaches, diarrhoea, etc. Anywhere we have IgE receptors risks being targeted.

You are right to try controlling ongoing elevated histamine because we can get stuck in a chronic state of immune system overload, coupled & perpetuated by ineffective thyroid hormones, compromised adrenal function, gut dysbiosis & inflammation (elevated thyroid antibodies & histamine). But unless you have an genetic impairment of DAO enzymatic function supplementing DAO is like a plaster that will help clear accumulated histamine but won’t help regulate further overload.

I’ve had a diamine oxidase activity test several years ago. It came back borderline so I supplemented DOA for a while, avoided processed & fermented foods, also left over food in the fridge , wine, blue cheese, etc, and took Quercetin + Vit C to regulate histamine release. Other useful anti inflammatories are fish oils & Vit D. You might also need some Betaine HCL (gastric acid) + pepsin (unless you are on PPI’s or H2 blockers) to help with digestion/absorption of nutrients, as this will encourage more of your own DAO enzymatic function in the gut.

There are histamine receptors found all over the body, hence we suffer such diverse symptoms. Mast cells (histamine) even have receptors for sex hormones so will be influenced by menstrual cycle or (peri)menopause (especially oestrogen) that in turn stimulates histamine receptors in the brain, nervous system, etc.

Imaaan profile image
Imaaan in reply to radd

Curious to know how much quercetin you took?

radd profile image
radd in reply to Imaaan

Imaaan,

In the past I have taken 500mg quercetin a day in a combo, usually with something like bromelian, resveratrol, nettle and I really like Vit C. Rutin is another bioflavonoid and a metabolite of quercetin. Any polyphenols are considered good effective anti-allergy agents capable of influencing multiple biological pathways. 

Datis Kharrizian offers basic understanding of the need for immune balance and how histamine responses are often driven by TH-2 (immune T-helper cells). Quercetin has been shown to bring balance to TH-1/TH-2 cytokines/interleukins, and mediate mast cells histamine release, suppressing antigen-specific antibody formation such as IgE. This relieves allergy symptoms such as itchy skin, hives, post nasal drip, headaches, etc. 

ncbi.nlm.nih.gov/pmc/articl...

Quercetin isn’t a lot of money and I have taken various blends before. The formulations dictate cost with anything containing resveratrol likely expensive. A more reasonable combo is the Dr Formulated which quelled my husbands hay fever last year. Many fruit & veg contain quercetin in tiny amounts (particularly onions). Be careful of supplementing if you’re on blood thinners. 

Other immune modulators .. drknews.com/are-you-th-1-or...

Imaaan profile image
Imaaan in reply to radd

Thanks for your in depth response.

crimple profile image
crimple

kaylee4848, thanks for posting. I am now going to do some research about Dao and histamine, educate myself!

kaylee4848 profile image
kaylee4848 in reply to crimple

SUCH an eye opener for me and WHY do docs not talk, ask or inquire about this? Here are SOME of the symptoms from having too much histamine: I have most of this but some very severe at this point, The digestive situation very bad, itching so much I bleed, I don't have a runny nose I have a faucet and post nasal river not drip. Sneezing etc. all the signs of being allergic to something but this time and the last time I was tested and even had surgery the docs could not find out what I was allergic to.

Bloating

Diarrhea

Headache

Flushing

Rash /Urticaria (hives)/eczema

Arrhythmia ( irregular heartbeat)

Low blood pressure

Wheezing

Runny nose

Watery eyes

Swelling of face/hands/lips

Heartburn

Itchy skin

PMS- Headaches around the menstrual cycle or painful cramps are most common

SlowDragon profile image
SlowDragonAdministrator in reply to kaylee4848

Bloating - low stomach acid/gluten intolerance/dairy intolerance

Diarrhea - as above

Headache - hypothyroid

Flushing - Hashimoto’s

Rash /Urticaria (hives) - Hashimoto’s

thyroidpharmacist.com/artic...

Arrhythmia ( irregular heartbeat)- low magnesium

Low blood pressure - adrenals

Runny nose - dairy intolerance

Heartburn - low stomach acid

Itchy skin - low thyroid levels/ low B12

Virtually everything on this list likely linked to having Hashimoto’s

celticlady profile image
celticlady in reply to kaylee4848

Just been reading your input with interest. I suspect I have histamine intolerance, I've noticed certain times of year especially tree pollen,,leaf mould time, I feel strange: anxious tired headache off balance BP lower . I also take levothyroxine . After taking antihistamines I feel better so obvious link. Bp lower as blood vessels dilate due to histamine, anxiety as histamine is a neurotransmitter activating the nervous system. As for food intolerances I haven't started that journey yet....so not all your symptoms are thyroid related as suggested below. Could be the DAO issue also not on hrt ...low oestrogen... oestrogen helps break down histamine ! Would love to see appropriate medic/naturopath with sensible advice. Best wishes.

Titaniumfox profile image
Titaniumfox

I have Hashi's and histamine intolerance, too. It took me ages to track down what was causing the food problems I began having a few months after my Hashi's diagnosis. Unlike you, DAO does nothing for me. In the end I've tracked the problems down to the root cause, which for me is being vitamin B2 and B12 deficient (and a number of other deficiencies as well).

Histamine food lists are only a guide, you need to figure out your own most triggering foods. Histamine content does vary, too, according to the age of a food, or how long it's been stored. For example, rice that's cooked then put in the fridge for use the next day will have a lot of histamine. I can eat freshly cooked rice with no problems, but day old rice is quite another matter. Certainly fermented foods are a big no-no! Once I knew what I had was histamine intolerance, I did eliminate as much histamine as I could and felt a lot better. I gradually re-introduced those foods and eventually got back to normal. However the intolerance started again and the next time I couldn't get back to normal by eliminating and re-introducing foods. I realised there was more going on. That's when I discovered the B2/B12 connection. Many people with hypothyroidism are deficient in one or both of these vitamins.

In a healthy person, histamine is normally inactivated by two enzymes, Histamine-N-Methyl transferase (HNMT) and Diaminooxidase (DAO). In B12 deficiency two things happen that affect the activity of these two enzymes. Because the HNMT obviously has a "Methyl" transferase activity, where the "Methyl" group is transferred from SAM (S-adenosyl-methionine, which is produced in the methylation cycle) to histamine, then when methylation is low, the activity of HNMT is also very low and so you get the histamine intolerance to histamines in foods, or your histamine response to allergens is heightened because you cannot turn it off. The second thing that happens in B12 deficiency is that you have reduced maturation of the gut due to lack of production of gut melatonin from gut serotonin. This then means that many of the gut enzymes that are supposed to protect you from bad reactions to dietary histamines, sulphites, etc, are produced in a much lower amount, and indications are that DAO falls in this category. Potentially this means that anyone who is very functionally B12 deficient may become histamine intolerant.

That's why now I am working on correcting my vitamin deficiencies, and I have had some improvement in histamine sensitivity, although as yet I am not fully back to normal.

kaylee4848 profile image
kaylee4848 in reply to Titaniumfox

Hi, thanks so much for writing, I was tested for all kinds of allergies back in 2015, had nasal surgery - OMG what a relief, BUT other than a slight reaction to bananas which of course are high in histamine and some weird grass, that is all that showed up. So the ENT did the surgery, but he said I don't know what is causing the problem so within 2 years it will be back. I do not have post nasal drip, I have post Nasal River! I blow my nose, cough, gargle and spit it all out for hours every morning. And just so my body thinks it has gotten rid of everything I get to sneeze 20 - 40 times creating of course more mucous for my factory. I have now just finished my 3rd round of allergy tests here in France and of course they again are all pretty negative. In reading up on histamine intolerance it is the accumulated and constant eating of foods, drugs, supplements which cause our bodies to overload, usually with a lack of or low DAO. The doc had never heard of a DAO test, I wrote it out for her, same in FR as Eng. she looked on her computer for a test for it and said nothing existed to her to test for this. So I said to hell with it and ordered the DAO. I am still learning and googling away madly to find what else has histamine in it - MANY drugs have it as well as supplements. I was taking furosémide (pee pill) 2 a day, loaded with histamine, doc took me off of it anyway, said it was the wrong kind of pee pill for me, not taking any now - sigh)

Sadly MANY of the supplements and foods that are supposed to help Hashi's and thyroid problems are on the DO NOT EAT list of foods, no kefir, no other fermented foods, NAC supplement which I had read if there was only one supplement you could buy this should be the one, so was faithfully taking 2 everyday. Many probiotics for our leaky guts are on the list. In all the years of recommended supplements to take to help with digestion, leaky gut etc. the one thing that has help in the last 3 months is a multi amino acid pill, I am taking 2 a day and for once I can see, feel and experience a difference from something. Of course the first amino listed is L-histidin which is probably a type of histamine, but am going to continue with that, I have stopped my S. Boulardii until I can find if it has histamine, and have cut back on a lot of supplements. I take a multi liquid Vit B - haha I had bloodwork done last week and my B12 came back at 956 (197 -771 range) but I think I had taken a double dose the day before, I also, especially if not outside take liquid Vit D3. I take one or two Vit B 1 tablets as well.

What else showed up in my bloodwork is that I am very anemic again, I am having a hip replaced in Sept. and I need a transfusion and the nurse will come give me injections.

What I find so confusing though is how many foods are on one list in the HIGH histamine category and the next list has the same food in the LOW histamine category, I mean really, does it or does it not have histamine in it. I am finding it very hard to plan meals out.

I have been taking DAO for 3 days and for 4 or 5 days been eliminating more and more histamine foods. But am very frustrated as to what is good and not good to eat, I love cherries and most fruit, but the contradiction on fruits is mind boggling. I even found a list that said banana was low - OMG I think it is one of the highest histamine fruits there is unless you enjoy eating green banana - the riper the foods the higher the histamine.

Thanks again, and maybe between us all we might find out more info.

Titaniumfox profile image
Titaniumfox in reply to kaylee4848

I would take the food lists with a big grain of salt. Do you know about the bucket theory for histamine intolerance? This means you have a personal limit as to how much histamine your body can take on any day before you get reactions. If your bucket is fairly empty (i.e. you haven't had much histamine that day/day before) then you can get away with ingesting more foods than contain larger amounts of histamine than when your bucket is full - when nearly everything will set you off! Bananas are fine if you eat them greenish when their histamine level is low. Obviously not TOO green!

*I mean really, does it or does it not have histamine in it* - it's not as simple as that, though. Take my banana example - a green banana has no histamine, this begins to develop as the fruit ripens. A good rule of thumb is if a food is aged, it will contain a lot of histamine (hence fermented foods are listed). Also there are foods that do not contain much histamine, but have histamine releasers, e.g. tomatoes. I plan my meals according to how I feel on a particular day. If I had histamine reactions in the night (I get them 4 hrs after eating) then I will stick to my safe foods for the next day to allow my bucket to reduce.

You can find special probiotics for people with histamine intolerance. I think it's Alison Vickery who talks about those. Her website if full of good information.

Don't take Histidine! It's an essential amino acid (not a type of histamine) but it's degraded to histamine and if you have low DAO then you cannot degrade it to something harmless, so you are poking the bear by taking it.

A high B12 possibly means you have paradoxical B12 deficiency, when a blood test shows you have an excess in your blood it's not an indication that you are replete in the vitamin. B12 is very complicated but a high reading isn't necessarily a good thing.

kaylee4848 profile image
kaylee4848 in reply to Titaniumfox

These list are driving me insane there is so much contradiction on them! I ate a bit of cepes last night that were picked on the property here, woke up this morning with my eyes swollen shut, whole face swollen, hard time typing fingers are so swollen - duh they are a fungus - so how on earth could someone put that on a low histamine list. I have figured out that the riper, older food is the more histamine there is so trying to eat what I buy and to freeze all other meats.

I know about the bucket theory and I think my bucket is overflowing! I looked up L-hisitdin (no e on my bottle and it is a US brand) but think it must be the same thing - it is the ONLY thing that seems to have actually help me is taking this multi amino acid pill - there are 9 aminos in it and histidin is the 2nd lowest, but will cut that out for a while. I would just like to find a decent list to go by and shop by so I can clear the histamine out of my body.

I am not worried about the high B12 from my blood tests, I am sure I took a large dose in the afternoon the day before as I was so tired and had forgotten to take in the morning. On my other bloodwork it has always been in range.

I just want a good clean list of food to get the histamine build up out, all nightshades have been stopped (have lovely tomatoes growing in my garden :( bell peppers is another example of a food showing up as high and low and who eats an over ripe rotten bell pepper?

Cottage cheese is supposed to be good and since I have found a source in France, hard to get here I have been eating it for breakfast and afternoon snack or with salad.

I am off to look at Allison's site. Thank you so much!

Imaaan profile image
Imaaan in reply to Titaniumfox

Thanks for sharing the b12 angle when it comes to histamine. Were you dealing with functional b12? If yes, how much b12 were you taking to treat it? Did you test for it? If yes, what test?

Titaniumfox profile image
Titaniumfox in reply to Imaaan

Yes, functional B12. I've been using Dr Greg Russell-Jones propriety B12 oil, the Adenosyl/Methyl one.

b12oils.com/products.htm

I originally did an B12 blood test, but later on did an OAT (Organic Acids Test) which showed I had a functional B12 deficiency. Just as a side note, you must have good levels of B2 before B12 can function adequately. I'm working on B2 at the moment as well (oral supplements).

Imaaan profile image
Imaaan in reply to Titaniumfox

I was under the impression the best tests for functional b12 were a MMA or Homocysteine test.

Thanks for sharing the product and the bit about b2.

Titaniumfox profile image
Titaniumfox in reply to Imaaan

MMA is part of the OAT, I had previously done a homocysteine test a few years previously (which was fine at the time). MMA is a marker for Adenosyl B12 deficiency. Pyroglutamic acid (OAT) is a marker for Methyl B12 deficiency. OAT will also give an indication of B2/B1/iron deficiencies, if they are present. It is an expensive test, though. Homocysteine can be affected by other things so isn't as good as a marker - it can mean low functional B2, low iron/vitamin B6/folate. It also depends on protein intake - if you don't eat enough protein, homocysteine will be low, but not in a good way!

Imaaan profile image
Imaaan in reply to Titaniumfox

Thnxs for the info

posthinking01 profile image
posthinking01

What is DAO please and Vitamin B6 reduces histamine I have proved it via blood tests.

kaylee4848 profile image
kaylee4848 in reply to posthinking01

Hi DAO is short for DiAminoOxidasa, I take a multi B liquid everyday.

posthinking01 profile image
posthinking01 in reply to kaylee4848

Hi - you would need to take a B6 supplement separately - not exceeding 100 mg - I take nature's best 50 mg B6 and it has helped no end - in many ways. It has given me energy etc.

I had high homocysteine and was lucky to have my levels checked at my hospital appointment - my levels were nearly 20 and I then started taking B6 - my next hospital appointment was three months later and surprise surprise I had proved it - B6 lowers homocysteine my test result showed about 3.

hormonesbalance.com/article...

If you look at what B6 does it is an amazing vitamin that has been rather ignored as a supplement to help with hormones and so many other issues. My memory has improved to such an extent I am remembering things from years ago.

Hope this helps.

kaylee4848 profile image
kaylee4848 in reply to posthinking01

Merci Beaucoup!!! I just looked at my liquid and it only has 10 mg's of B6 in it, OMG with all the help I have received on here, reading Allison's site, I have just ordered a bunch of stuff, but off to order B6 now!

posthinking01 profile image
posthinking01 in reply to kaylee4848

If you can try Nature's Best which is very reasonable in price and I can recommend it.

kaylee4848 profile image
kaylee4848 in reply to posthinking01

I will see if I can get that brand. Some things from the US and UK are carried here, but sadly many are not.

posthinking01 profile image
posthinking01 in reply to kaylee4848

Sorry only just seen you are in France. Do you want me to call N's Best and ask if they ship to France and cost ?

posthinking01 profile image
posthinking01 in reply to posthinking01

Just checked they used to be able to until the EU made it difficult to export. So sorry they don't deal with Europe.

kaylee4848 profile image
kaylee4848 in reply to posthinking01

I ordered another brand that I have used many times, I could not find their brand here anywhere, such a pain that it costs mega to order from the US or the UK now, I really miss ordering from Whole Foods, they had such amazing spices and other things, Brexit really screwed things up.

JAmanda profile image
JAmanda

I would say my histamine intolerance is one of the things I’ve improved since starting thyroid meds. But I also stopped avoiding things I couldn’t tolerate like peas and peppers etc and just didn’t worry about the farting and pooing - in favour of just getting my belly used to these foods and able to deal with them. I did try DAO and enzymes for years but feel that just eating everything was a better approach - especially all the basic food like cheese apples oats etc that help build your stomach flora plus yogurt kefir - everything!

Imaaan profile image
Imaaan

I just started taking thymus from ancestral supplements and I'm noticing something. If you look at the Amazon reviews its helped many with their nose and histamine, amongst other things. I'm in my early days but I'm definitely feeling a sense of well being 2 or 3 hours later and I cant put my finger to it. I'm on day 4 only. I'm impressed so far with the feeling of overall well being that I placed another order for their bone and marrow. It costs a lot but for my health I'm willing to go the extra mile.

I struggle to breathe out of my nose and I'm curious to know if you had a septoplasty or a turbinate reduction? How was your recovery?

kaylee4848 profile image
kaylee4848 in reply to Imaaan

Sorry to say I am not sure exactly what I had with my nasal surgery except immense relief after I was healed, took a few weeks and lots of netti bottle all day long to stop scabs from forming, wasn't that bad at all after a couple of days. And for two years I didn't sneeze all the time, my nasal passages were not all swollen, as well as my eyes which I had blamed on my thyroid problems. I woke up this morning with my eyes swollen shut. I was brought a basket of Cepes last night, picked right where I live, so cooked some to go with my steak and courgette. On one of the ok histamine foods to eat was mushrooms, but when you think about it, they are a fungus and all products made with molds and fungus are not good, so will be passing them on to a friend :(

Imaaan profile image
Imaaan in reply to kaylee4848

Glad to hear that your healing wasnt awful.Thanks for sharing your experience. Sorry to hear about your eyes. I'm glad that you were able to pinpoint the culprit.

StitchFairy profile image
StitchFairy in reply to kaylee4848

Are mushrooms high in histamine? Mushrooms are low in histamine with studies finding no detectable histamine in this nutrient-dense fungi. However, mushrooms contain putrescine and spermidine in amounts high enough to cause histamine intolerance symptoms if you have a low level of diamine oxidase. histaminedoctor.com/are-mus...

kaylee4848 profile image
kaylee4848 in reply to StitchFairy

Thanks, and I have never had a high reaction to mushrooms before that I noticed, but several hours after eating the cepes, and all day today I seem to be having a reaction still. I don't know how different they are from regular mushrooms, button, bella's etc. this was my first time eating cepes. I am SO itchy!! Eyes are still puffy etc.

Cepes in France
StitchFairy profile image
StitchFairy in reply to kaylee4848

I've never tried Cepes. I'm ok with common supermarket shrooms (chestnut, portobello and white).

Were your cepes wild? Wondering if it could have been something to do with location they grew in. Just a thought!

kaylee4848 profile image
kaylee4848 in reply to StitchFairy

My first time with them as well, yes they were picked wild up in the chestnut grove where they always pick them, by a Frenchman who picks them all the time from there for 20 or more years, I have taken a anti-histamine and drinking lots water and my French teacher said she would love them, I have never experienced such a reaction, my histamine intolerance seems to have been going on for years and years and I never noticed much of a difference between foods before.

StitchFairy profile image
StitchFairy in reply to kaylee4848

Have you seen this site. Not recommending, but it might have some useful info healinghistamine.com/about/...

Gillybee24 profile image
Gillybee24

I testing comment

I too have unrelated nasal congestion that is so bad at times

What is BAO Please ? perhaps I need that !

kaylee4848 profile image
kaylee4848 in reply to Gillybee24

Not sure if I wrote BAO, but if I did, it would have been an autocorrect. DAO as in Daosin is something that can help eliminate histamine from the body along with following a low histamine diet. I have suffered with a mucous factory in my head that just got worse and worse, and happened upon histamine intolerance. Funny, no doctor could figure this out, just said I wasn't allergic to too much of anything. Which is correct, I was allergic to SO many things in small amounts which added up to a constant flow. Some of the biggest culprits are aged cheeses, sausages, wine, pickled, fermented foods etc. I was pretty lucky that after 3 months on the diet my body reset, and I was able to slowly eat some of these foods again. But again WHY do doctors not know about this stuff?

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