Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: racjen on June 25, 2020, 11:08:26 AM
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Anyone on here got any experience of histamine intolerance? I've been struggling with major menopausal anxiety and depression for the last couple of years, despite being on HRT - just never really seem to be able to find a combination I can tolerate and feel stable on for any length of time. My partner was doing some research the other day and discovered the section on Louise Newson's website about histamine intolerance, which I'd never heard of. It can be closely linked with menopausal problems, as histamine and oestrogen work in a sort of feedback loop where each increases production of the other. Symptoms include anxiety, headaches, nasal congestion, exhaustion - all of which I have and which've been worse since the beginning of hayfever season, which has been particularly bad this year.
Trouble is, it's not easy to diagnose - taking regular vit C and antihistamines can help, but in the end the main thing is an incredibly stringent diet with no dairy, no gluten, no fermented foods or yeast, no processed meats, some fruit and veg but not others etc. And the Histamine Intolerance association recommends you don't try that without the help of a doctor. But it seems to me the sort of thing your average GP would have no idea about whatsoever. Don't know if I'm just clutching at straws with this or if it's worth pursuing, maybe even getting a consultation with Dr. Newson? Nothing else is working and I'm getting really desperate.....
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Hi Rachel Tina Peers is a menopause dr and specialises in histamine intolerance. it's a path I'm pursuing myself. X
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Hello racjen.
Histamine intolerance is not something I've heard of but sounds interesting so I will investigate when I have the time.
You may be interested to know that the diet you've described sounds like a whole foods plant based diet that I have been following for a few years although I don't avoid any particular fruit or vegetables. I don't have any allergies and of the problems you listed the only one I have is anxiety. I am post meno and not on HRT.
I agree that it is probably pointless asking your GP for any guidance so a specialist like the one suggested is likely the way to go.
I am sorry to learn that you are still having problems despite HRT and I hope you find the solution soon. Many of us find that HRT doesn't help with all our symptoms so it is always worth investigating other treatments.
Wishing you well.
K.
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Hi racjen, if you put histamine into the search box you'll find other threads where it's been discussed. I particularly remember a couple of threads by a member called RebJT who had terrible probs with histamine & I think saw Tina Peers about it.
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Thanks, I'll look up Tina Peers but wonder whether it's worth spending ?250 for what feels like a long shot...
Kathleen, it's not a plant-based diet, you're allowed fresh meat, eggs and fish, just not dairy or meats like bacon and salami. Also not really wholefood as no nuts or pulses and no gluten. Just as well you can eat meat as not an awful lot left!
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I don't think that you have enough variation in your diet! The gut is designed to work on various food stuffs that we feed it, extracting what it requires at different rates during 24 hours in order to give the body energy and to process waste into excreta and urea. What is the point of histamine in the body ........ it's now something I'm familiar with, can you tell ::)
Louise Newson would be my route ;-)
OK - talking to myself here:
NHS web-site
How antihistamines work
Antihistamines block the effects of a substance called histamine in your body.
Histamine is normally released when your body detects something harmful, such as an infection. It causes blood vessels to expand and the skin to swell, which helps protect the body.
But in people with allergies, the body mistakes something harmless ? such as pollen, animal hair or house dust ? for a threat and produces histamine. The histamine causes an allergic reaction with unpleasant symptoms including itchy, watering eyes, a running or blocked nose, sneezing and skin rashes.
Antihistamines help stop this happening if you take them before you come into contact with the substance you're allergic to. Or they can reduce the severity of symptoms if you take them afterwards.
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Criky - sometimes I wonder why our bodies contradict what we actually require :-\
What are the effects of too much histamine?
The ingestion of histamine-rich food or of alcohol or drugs that release histamine or block DAO may provoke diarrhea, headache, rhinoconjunctival symptoms, asthma, hypotension, arrhythmia, urticaria, pruritus, flushing, and other conditions in patients with histamine intolerance.
2019 - Does estrogen increase histamine?
This means that estrogen can cause the production and release of histamine; it also decreases DAO levels, so estrogen can certainly cause higher histamine levels. Progesterone naturally lowers histamine levels, so if you have estrogen dominance (and thus, lower progesterone) you'll have higher histamine levels.22 Oct 2019
My head is buzzing :-\. I can see why u are trying a restricted diet.
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Hello again ladies.
racjen- I misunderstood and assumed no dairy also meant no animal products. This diet does sound a bit of a mixture and now I'm even more intrigued! I can understand the exclusion of nuts and gluten as allergies to these foods are well known but I think pulses mean peas, chickpeas and lentils and I've never heard of any sensitivities to those. I'm certainly interested to learn more.
Good luck with your research and take care.
K.
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CLKD, I'm not doing the diet, just found out about it during my research. I can assure you I understand how nutrition works and if I was to go on a stringent diet like this I'd make sure I had enough variation.
Kathleen - I'm confused about the whole histamine thing tbh. Don't think what they're talking about is the same as an allergy to specific foods like nuts, it's the histamine itself that's causing the reaction. So it's irrelevant whether pulses are known to cause allergies, they're high in histamine and that's what causes the problem...
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Kathleen, I think from what I remember that the issue with peas, beans & other lectins is that the form of protein they contain is thought to cause release of histamine, which may not be a problem for those of us who can produce enough of the enzymes that break it down, but may be for people who are deficient in those enzymes or for whatever reason need to reduce their histamine load.
I followed a histamine-reducing diet for a while in perimenopause to see whether it would help with very troublesome rhinitis, flushing, insomnia & other symptoms thought to be associated with histamine intolerance. I forget many of the details & Racjen will be more up to speed with it than me, but from memory the idea is twofold: 1) to reduce intake of histamine rich foods & drinks eg fermented foods & drinks, aged cheeses etc & 2) to limit those foods which cause release of histamine in the body. So reduce intake of histamine as well as limiting its production in the body.
Racjen, I remember extensive lists that grouped foods according to whether high, moderate or low in histamine/substances causing production of histamine (I kept one in my handbag to take shopping & when eating out!) As it's so restrictive avoiding the lot, could you maybe try cutting out just those thought to be most problematic to see whether your symptoms ease at all - that might give you more of an idea whether histamine is behind your symptoms so you can then decide whether it's worth forking out to see a specialist?
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I think it's worth forking out, if I needed assistance I wouldn't [didn't] hesitate. One can after all take or leave the advice ? Will you let us know how you get on?
Maybe take a list of symptoms etc. with you so that nowt gets missed?
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They're not doing face-to-face consultations at the moment, so it would be ?250 for an unspecified length phone call with no opportunity for a 15 min preliminary call just to see whether there's any point or not. That feels like too much money for me - I haven't been able to work for several years due to severe menopausal symptoms, so i'm living on benefits. ?250 is way beyond my means...
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I wonder why very few places are doing face2face? Hospitals and Clinics should be according to the government, open for business :-\
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I wouldn't be able to get there anyway as I don't drive and wouldn't use public transport at the moment.
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Always an issue, travelling. 4 me it's anxiety about the journey :-\
How R U this morning?
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For R new member and there are several on this topic ;-)
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HI RacJen et al.
I have been researching histamine intolerance and mast cell activation for a while now as I have the former and probably have the latter.
It's a complicated subject with much conflicting information however there is a way through it all. Hopefully, the information below might help. Please recognise that I have put this together from my own research and am not a doctor or making recommendations.
1. What is it? Histamine intolerance is the inability to clear histamine in the gut often due to a deficiency of Diamine Oxidase (DAO) or problems with N-Methylhistamine. The general idea seems to be that you have a "histamine bucket" which fills up over time as your ability to clear histamine is less than the histamine present in the gut. After a while the bucket is full and overflows and hey presto! The symptoms are broad ranging and not just in the gut. The important point here is that you can be happily eating the same meal for several days and then suddenly you will react to the meal... you're not allergic to it but your body has had enough histamine to cause problems. This is partly why lots of people struggle to find the things that "trigger" them and of course everyone is different so it's hard to make direct comparisons between people. Mast Cell Activation Syndrome occurs when the mast cells become confused and release mediators "willy nilly" and some mast cell activation can be as a result of chronic histamine intolerance, some can be genetic. If you have histamine intolerance you won't necessarily have Mast Cell Activation. If you have Mast Cell Activation, you are quite likely to have histamine intolerance. Essentially I was told, work on the histamine intolerance and deal with that.
2. First Steps. The diet. Everywhere I looked the first thing to do was to adopt a 2 week low histamine diet. After the 2 weeks you would hopefully notice a difference and then you would be able to add back foods SLOWLY and one at a time, noting any reactions. There is no such thing as a "No histamine diet". Also it is important to recognise that histamine is present in some foods, some foods can liberate or provoke histamine production or can block the production of DAO. Not only that, but histamine can increase depending upon how food is cooked and prepared. It is really important not to eat leftovers even from the fridge and if you do cook more than you need, freeze it quickly. The SIGHI food list is widely recognised as the food list to use (there's a link below).
3. Antihistamines. These are a God send for me. Taking both H1 and H2 anti histamines on a daily basis doesn't reduce the amount of histamine circulating in the body but it does stop or reduce the symptoms. Dr Tina Peers recommends Fexofenadine 180mg twice per day as the H1 element and Famotidine as the H2 element. It should be noted that the standard dose of Fexofenadine is 180mg per day and so this would need to be under the guidance of a doctor. I have tried Levocertirizine but then changed to Fexofenadine and personally the latter gives me better results.
3. Supplements. Well, I understand that Vitamin C is a helpful supplement but it is better to take it through the day unless you have a sustained release version. I am currently taking 1000mg sustained release once per day.
Quercetin can also be quite helpful and I take 500mg once per day. DAOSIN or Diamine Oxidase capsules are also great but they're prohibitively expensive so I bought some to test and they made a difference, now I keep a few in case I eat out or can't control the dietary intake.
4. Hormones. Oestrogen and histamine increase each other. Almost like a "feedback loop" when oestrogen increases, so does histamine, but then when histamine increases, it prompts oestrogen to increase further and so on. This causes a lot of problems for women who cannot stabiliise their HRT dosage (just like me). It has been like a very unpleasant roller coaster for years now and I know from my own experience that the symptoms can be debilitating.
There are a number of papers published highlighting the fact that progesterone inhibits histamine production.
5. So, if you've made it this far, here are some of the links and reading which I have found useful. If you would like to talk further on my experiences on this journey, you're welcome to message me directly.
https://www.histaminintoleranz.ch/downloads/SIGHI-Leaflet_HistamineEliminationDiet.pdf
https://www.mastzellaktivierung.info/downloads/foodlist/21_FoodList_EN_alphabetic_withCateg.pdf
https://www.histamineintolerance.org.uk/
https://www.drtinapeers.com/
https://www.youtube.com/watch?v=em-BxpImE6A
https://lizearlewellbeing.com/histamine-intolerance-with-dr-tina-peers/
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Hi Rosti. Wow - what a comprehensive & helpful post :medal: I recognise some of the links without reading them but will try to have a look at others later. A good few years since I looked into this so it will be a great refresher! The Tina Peers interview with Liz Earl I did listen to a week or so ago.
women who cannot stabiliise their HRT dosage (just like me)
How are you doing & have you managed to continue with HRT?
Thanks for putting it all together. I'm sure anyone suspecting histamine might be an issue for them will find it very interesting & useful. :thankyou:
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Hi
I'm in the middle of this too!
I'm convinced I have HI. I'm going to put together a 4 week low HI menu so I can just get on with it. It's similar to the the low acid one where PPIS did nothing for my reflux.
I'm going to try reducing my hrt too after reading the link with histamine as I'm on a high dose, I don't take progesterone as I've had a hysterectomy so this may be a factor too.
Is it okay to take H1 antihistamines every day long term? I seem to remember Jane Lewis said it can aggravate VA?
Do you still have milk? Or an alternative?
Would you try to reintroduce 1 thing per week to check for reaction?
Would you recommend Tina Peers for a consultation? Does your gp take any notice of the guidance. Mine doesn't understand peri/hrt etc so I'm sure they won't understand HI.
I really hope this works, I'm so sick of the grotty symptoms.
Would you please stay in touch with progress so that we can compare notes? x
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Hi Rosti,
thanks, that's really useful. I started to suspect I might have histamine intolerance only a couple of weeks ago - like you I've struggled to stabilise my HRT dosage over several years, and yoyo between extremes of anxiety and depression despite a high dose of estrogen.
We did a lot of research last week and I've now been on a low histamine diet for 6 days and have also been taking Vit C. Over that time I've gone from regularly having to stay in bed all day, or being too anxious to go out or even see my own daughters, to being up, dressed and motivated to do creative work every day. Yesterday my daughters came for dinner, and today I went out on an 8 mile bike ride. Obviously it's still too early to say that this is down to the diet, but I do feel a lot better than I have in quite a while. I haven't tried taking antihistamines yet so I guess that's the next step; I think Louise Newson suggests just taking loratadine to start with as that's available over the counter, and I don't really want to have to discuss this with my GP until I feel more confident.
I'll certainly be carrying on with the diet, probably for a full month before I even try re-introducing anything. Tbh I'd be willing to live on brown rice, chicken and cabbage permanently if it meant I got my life back!
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Hi,
So with the diet, it's important to remember that it's not just "what" you eat but also how it is stored and cooked. I learned the hard way that I had to stop batch cooking and then having some the next day having stored it in the fridge... I also learned that fresh fish has been around a bit before it gets to the plate and so I now only have frozen fish which ironically is fresher... unless of course you meet the trawler as it comes back from fishing. Shellfish is a complete no-no, definitely problematic. I found that mince, whether it's beef or pork or chicken was also not a good idea. Sadly Coffee and Builders tea are out as is Green Tea. I also found that Chamomile tea doesn't work for me either.
There is conjecture surrounding dairy products. Aged cheeses are out.. bye bye cheddar cheese on toast. Absolutely no blue cheeses but I also found out that dairy as a substance is inflammatory and so for my strict two weeks I said bye bye to everything dairy.. .including milk and yoghurt which I love. Yes, for me it makes a difference.
Gluten is also apparently and inflammatory and I have tried to cut that out for the two weeks but I think I have slipped up a couple of times without knowing it.
After the two weeks, if you feel a bit better or notice an improvement then maybe try one food per week, but taking it really slowly so as not to undo the good work and ending up back at square one just several weeks down the line. If you react then clearly remove the food and let your gut settle.
The other thing here is to think about probiotics. I understand that for many people their gut microbiome has been damaged by the imbalance and re-populating the gut with helpful bacteria is important. Of course things are never that simple and not all probiotics are equal, some actually being high histamine or histamine promoters themselves.
I believe that some people use Symprove but for me that's prohibitively expensive and there is not a guaranteed outcome. I am trying HistaminX simply because it was the more affordable option, it's in capsules and it seems that the strains are low histamine. Bear in mind that my research suggests that these work for some people and not so well for others so it is a bit trial and error. I have no connection with the producers of either of these products.
I am also finding that intermitttent fasting can be really helpful. I tend to eat one meal per day at the moment and although it sounds severe with a bit of practice I have actually found it to be relatively easy. However, I have found that when histamine is causing trouble then I am ravenously hungry for sugar and carbs... Sometimes a long walk helps.
Exercise. Another contentious subject. Exercise in itself can as I understand it releases histamine, so strenuous exercise may make you feel worse again... This really is a personal thing but slow and steady seems to be the mantra.
Over the years I have found that GPs in general are a bit hit and miss... I have seen quite a few and only a few have been helpful in a practical manner. Hence I decided to do a lot of my own research and then provide a compelling argument that so far they have struggled to disagree with. My current GP knows that I have done the legwork before I go to them so they do tend to travel with me.
I met Tina Peers last year but not on the Histamine subject. She seems nice and as I understand it her daughter has histamine intolerance and they embarked upon a long journey to get her a diagnosis so perhaps she understands more. As this has so recently become recognised in the mainstream everyone is learning. So for me I decided that I would do as much as I possibly could before seeking the help of a "specialist" in this field. It may well be that I will need help if it does turn out that I have Mast Cell Activation on top of Histamine Intolerance but for now....
Hope you find this useful.
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Thank you x
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hi Rosti,
yes, after our research I cut out all leftovers and only eat freshly cooked food, and no fish at all because as you say it's almost impossible to get it fresh enough. A real pain as I hate waste, but at least my partner can polish off yesterday's dinner for lunch! I'm being super-strict to start with, so no dairy at all, was already strictly GF and alcohol-free. The only thing I can't give up completely is coffee - I need one cup of real coffee a day or I get withdrawal symptoms like you wouldn't believe! But all the detailed lists I've looked at put coffee in the 'maybe' category (unlike tea) so that's my one vice x
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Hello again ladies.
Are a range of allergies the most obvious indicator of Histamine intolerance? If so presumably ladies suffering during HRT use would also have a history of allergies before the menopause?
I am also curious as to why leftovers should be avoided?
Good luck to anyone trying the elimination diet and I'll be interested to read any updates.
Take care everyone.
K.
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Kathleen,
I am also curious as to why leftovers should be avoided?
I think the problem is that histamine levels in food increase as it ages.
Wx
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Hello again ladies.
Folklass and Wrensong - Thank you both for your comments. I am interested in this subject anyway but especially as I batch cook so often eat leftovers. I don't eat any animal products but I see that some plant foods are on the avoid list for those with Histamine intolerance.
I wonder if batch cooking and eating leftovers is only a problem for some food items and not for others?
Wishing you well ladies.
K.
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Hello again ladies.
Folklass - I have just come across a site called healinghistamines.com. The woman who runs it argues that antioxidants fight Histamine inflammation and she manages her intolerance by including antioxidant foods with every meal. The foods are all plants and include herbs such as sage which has excellent antioxidant properties apparently. I haven't looked at the whole site but I will when I have more time.
Hopefully this will be of interest to you.
Wishing you well and take care.
K.
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My research suggests that it'd be extremely difficult to do an entirely plant-based low histamine diet, mainly because you have to cut out pulses, nuts, soya, all fermented foods and any gluten-containing grains (at least to start with). So it'd be very difficult to get enough protein when the only available non-meat or dairy sources are a few seeds. I'm eating a lot more meat than I normally would because, in the absence of all the above and dairy too, there's very little else I can get protein from.
As others have said, it appears that histamine is produced in food as it ages; some foods are worse for this than others, so fish needs to be eaten straight out of the sea, meat cooked fresh and the only cheeses that might be tolerated are the very young types like cream cheese, feta or mozzarella. Anything matured or mould-based (ie blue cheese) is completely out. And any kind of convenience food is out because you don't know how long it's been sitting around, plus it might have all sorts of histamine-containing or producing additives....in short it's a bit of a minefield! But still worth it if it resolves the symptoms I've struggled with for the last two years and pretty much given up on ever finding a solution for.
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Hello again ladies.
I may have mentioned this before on the forum but I used to work with someone who suffered with migraines. He was in his late forties and had worked out that if he had an apple within thirty minutes of eating a chocolate bar he didn't have a migraine. Perhaps the antioxidant properties of the apple cancelled out the Histamine problems caused by the chocolate? He also found that beer was a trigger but not Guinness!
His experience supports the idea that histamine intolerance can be controlled by eating antioxidant foods at the same meal. Perhaps combining foods in a similar way is worth a try ladies if a strict elimination diet isn't practical.
Hope this is helpful and take care everyone.
K.
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That makes sense.
I feel like I'm having a bit of a lightbulb moment with this.
I used to be really successful sorting out reflux with just being careful with what I ate and drank.
My acid reflux has gone crazy since peri, as has allergies, breathing problems, inflammation etc etc.
The common denominator seems to be histamine. Histamine is produced in the stomach. When there is too much, it creates more stomach acid leading to reflux etc. Histermine is overstimulated by certain food/drink and also oestrogen. The oestrogen spikes during peri can cause it.
High histamine makes the body thinks it's under attack leading to inflammation, which causes vasodilation and opens up blood vessels. I assume this causes the hot hands and feet, big veins, numbness and pins and needles, chest constriction etc.
I think this is pretty much right. I'll have another read of it all.
I'm going to reduce my HRT a little bit and try a 4 week histermine diet (which unsurprisingly seems to be the same as the reflux one). I'm going to take my antihistetmines and see where I'm at in a month, then try reintroducing a different food per week to figure out what sets me off.
I think histermine is another thing drs know very little about unfortunately. I've also been to an gastrentologist recently (misspelt sorry). He never mentioned histermine and when I asked if there was a link with reflux and hormones (meno/peri) he said no.
Ranitidine is a H2 blocker for the stomach prescribed for reflux, which I actually had initially but then it got recalled as some OTC ones where found to be dangerous, prescription ones weren't but also got recalled frustratingly. Antihistamines are a H1 blocker and available cheaply OTC.
I'm hoping once the peri phase is over and my hormones are a bit more stable that this will help!
X
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Folklass, tbh I think it's widely acknowledged that it's impossible to cut out all antihistamine from foods; I'm not aiming for that, but as there are so many hidden or unexpected sources it seems wise to start by at least cutting out all the really obvious ones (but as I said previously, I can't do without a small amount of tea and coffee every day so that's an example of somewhere I'm making a compromise).
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Yes, I think it's about cutting the big hitters and then finding if the others do anything by simple trial and error. It's going to be a long hall I suspect x
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Hello again ladies.
Folklass - I don't have a list of anti oxidant foods but I think the plant kingdom is your best bet lol. I believe some fruit and veg score higher than others and the site I mentioned claimed that apples were good but sage was even better lol. For more information I would just Google 'Foods High in Anti Oxidants'.
Avoiding dairy is always worth a try to see if you feel better without it.
The guy I worked with stipulated that he had to have his apple within 30 minutes of eating the chocolate or he would feel a migraine coming on. I think the healinghistamines.com site suggests this as well.
My knowledge on all this is very limited as I am not a migraine sufferer so please bear that in mind ladies and do your own research on the subject.
Wishing you all well.
K