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[CLKD]

For R new member and there are several on this topic ;-)

[Rosti]

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/

[Wrensong]

Hi Rosti.  Wow - what a comprehensive & helpful post    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. 

[Bobidy]

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

[racjen]

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!

[Rosti]

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.

[Bobidy]

Thank you x

[racjen]

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

[Kathleen]

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.

[Wrensong]

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

[Kathleen]

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.
 

[Kathleen]

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.

[racjen]

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.

[Kathleen]

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.

[Bobidy]

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