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[CS24]

Hi,

I have been struggling with HRT, especially the last 10 weeks with chronic insomnia.

Initially my body did not absorbs much oestrogen but all of a sudden after the news in clinic increased my oestrogen from a 100 patch to 100 patch & 6 pumps of oestrogen gel my symptoms went from 2 weeks of feeling good and then a massive drop with insomnia. Adding a higher dose of progesterone did not help in fact seemed to make it worse.

I am with the news in clinic who have now identified a histamine intolerance and have dropped me to a 50 patch, 100 progesterone and a high dose of testosterone. They have also advised a low histamine diet, Omega 3, vitamin C, x2 antihistamines. They advised I should take magnesium but I’m not sure if it is helping or making things worse. Which is the right magnesium?

It’s been day 3 and I’ve not yet seen an improvement. I have a call with the clinic again in 2 weeks but this topic is so new to me and I am so fed up with all of this. It would be good to get some upbeat feedback from others with the same diagnosis.

I just want to know that there is light at the end of this tunnel.

Thanks

[CLKD]

Morning. I C that U have several threads on the same topics  so will reply on this.

How is a histamine 'intolerance' diagnosed? 

Browse round.  Make notes ;-).

There are several threads on intolerance ........ and yes, there is light at the end of the tunnel.

MayB tell us how old you are, what your periods are doing, which symptom would you like to ease first with HRT?

[CS24]

Thank you.

I am 47. The newson clinic diagnosed it based on my symptoms and response to HRT.

I am no longer bleeding. I was when my oestrogen dose was very high (100 patch and 6 pumps). Then the addition of a high dose of progesterone also resulted in bleeding.

Newson has paired everything back. Only a low patch of oestrogen, 100mg progesterone and a slightly higher dose of testosterone.

[CS24]

Sorry just realised it posted the same message several times. Is there a way of deleting the other messages. I tried but it doesn’t allow me to.

[Peana]

Sorry you're suffering.  There is a lot of info online - one site I find helpful is 'low histamine eats'.  It's not medical advice, but explains different ingredients really well and has links to other sites.  I've still not been formally diagnosed as it's notoriously difficult, but keeping a food diary is a must, for example, I've identified that red wine is really going to hit me, but surprisingly I can have a half a beer.  Previously my diet was prob 80% high histamine food, but with a bit of creativity it's now 80% low histmine and I feel so much better, so it's worth persevering with.  I've even managed to reduce the number of antihistamines I take.

Good luck with your journey. 

[CS24]

Thanks Peana.

1. How long did it take for your symptoms to improve?
2. Newson gave me a list of foods to exclude but 90% of those are foods I eat today. I am struggling to find breakfast and lunch ideas. Dinner I just make rice and veg and meat/fish.

[CLKD]

We can't remove our own threads.

How long B4 1 notices any difference when the diet is altered?

[Peana]

I think the length of time to alleviate symptoms varies from person to person depending on severity.  I think my 'histamine bucket' is actually pretty large, so by keeping a very detailed food diary and continuing to eat some high histamine foods, I've managed to find my worst triggers over about 4 months.  For example, I have symptoms when I eat a rich, reduced, tomato based sauce (even using home grown, fresh, organic toms), but I can get away with one or two fresh tomatoes in a salad.  Aged foods and drinks (red wine, whisky, mature cheese, smoked fish, etc..) are a no-go these days, but when you start to feel well as a result of cutting back, it's easier than it sounds.  However, you should undertake any exclusion diet very carefully to ensure you don't restrict your nutrition - most advice is to use a dietician or nutrionist to help.  My triggers were luckily quite obvious to me once I looked, so I haven't needed to exclude all foods you see on lists of high histamine foods.  When I first identified my histamine problem it was really upsetting, but feeling well is a great incentive, and you will learn substitutions e.g. chard instead of spinach, hazelnuts instead of walnuts, red pepper based sauces instead of tom. 

There are lots of advice and resources online (and elsewhere on this forum if you do a search) and some folks find supplements help (vit C, quercitin, DAO, etc.), especially when eating out.  Luckily I've managed without these so far.  I previously ate a massive amount of fermented foods (kimchi, miso, kombucha, water kefir, choc, yoghurt, etc.) and cuting these out has been the biggest help for me.  Also, freezing any leftover food as soon as it is cool enough, rather than leaving leftovers in the fridge for the next day, has helped too.  I was horrified to see beans and pulses on the 'bad' list, but by soaking these myself and cooking (in a pressure cooker) just before I want to use them in a recipe, I've found that I can tolerate them (phew!).  I know there are some people who have a much smaller 'bucket', which can overflow and cause symptoms very easily, so I've actually been pretty lucky in my journey.  I really hope you can identify your worst triggers quickly and hopefully start feeling better.  If I stick to low histamine foods 80% of the time (and none of my bad triggers), I can even manage the odd square of chocolate!

To be honest, when I was going through puberty I had to give up chocolate as it started giving me really bad headaches.  I didn't eat it for a couple of years, but when I was a bit older and my hormones had settled down I was able to eat it again.  It's only since hitting perimenopause and needing MHT, that I started to have issues with food again.  I'm hoping that once things have stabilised (possibly in a few years I can manage without MHT???) I might be able to adjust the balance of low to high histamine foods back to something more normal.

Good luck, and please don't be too disheartend.  Use your symptoms (and feeling well) to learn how things affect you and hopefully you can adjust your diet as you learn more about your body and the alternatives you can eat.  I hope it's not too difficult a journey for you.

[CS24]

Thank you so much for your response. You have brought me to tears. I feel so alone with all of this and it doesn’t help that my symptom is insomnia.

I am struggling with food and what to eat and not eat. I thought I was so healthy and it now seems everything I eat is on that list. I suspect it is a mixture of introduction of additional foods in the last few months and high oestrogen dosage. I was on 100 patch and 6 pumps as newson thought I had an absorption issue. Food wise I think it’s things like avocado, sourdough bread, tomatoes, coffee, chocolate, bananas, mature cheese and peanut bars that I have predominately been eating.

I now dread sleep which I loved and feel like such an emotional wreck. I fought several years to get pregnant and have my 2 boys and now I am so exhausted I feel like such a shit mom. I am day 2 only in this new journey and tonight is my first night where I need to stop my sleeping pills. I also feel so despondent with this diagnosis especially as only 10 weeks ago when the dose of oestrogen was increased I felt so good.

Did you take any supplements initially and if so which worked for you?

How did you find a dietitian as I am struggling to come up with meals I can eat. Literally porridge, gluten free bread, vegetables and chicken, fish and an apple. It just feels rubbish x

[Peana]

CS24, you sound like you're in such a desperate situation, but there will be light at the end of the tunnel.  The insomnia on top of everything must just be too much right now, but I'm sure you're a great mum and your boys love you.  This forum helped me get through my darkest moments, and hopefully it'll help you too.

My favourite website for recipe inspiration is this one: https://lowhistamineeats.com/low-histamine-foods-list/
The lady who runs it isn't a medical professional, but suffers herself and provides some really helpful info and links elsewhere.  She has some great breakfast ideas (her 15 and 30 min 'overnight' oats are my go to at this time of year with so many apples and raspberries in the garden to add to it).  Her low histamine waffles are great - even my husband is happy with them (topped with fruit and quark (instead of yoghurt)!  She also has suggestions for making low histamine 'pizza' and similar substitutions.

I didn't use a dietician myself, but consider myself a good home cook and really kept an eye on nutrition (I've been vegetarian since a teenager, so have always read the labels on packaging).  I've resorted to using a pea protein powder in smoothies to make sure I'm not missing out on that - some are more suitable for a low histamine diet, but there's info on line of you search.  I've also started using a lot of bean and pea flours to make pancakes - this is one of my favourites https://hodmedods.co.uk/blogs/recipes/pea-bean-dhebra (substituting the spinach with kale or chard).  I was nervous about using a bean flour at first, but luckily I can tolerate it used fresh (tinned beans and pulses are still of the menu).

I've had a bad reaction to coffee since my 20s, so I only ever had one or two cups a year - giving it us was therefore easy for me.  Chocolate was easier than I thought (when hubby is munching on it i'll have a couple of brazil nuts and a couple of organic, sulphite free, dates).  Tomatoes was a biggie, but roasted peppers blitzed up with herbs and some nuts that you tolerate is a tolerable alternative.  I've never liked bananas, so again an easy one for me to avoid, and although I love avocados I don't eat them often.  However, I've managed a small amount of avocado when I was eating breakfast in a cafe (poached eggs on GF toast), and it was okay for a special treat.

I make my own sourdough rye bread and my favourite food was marmite on toast!!!!  However, I've cut it back to once a week and I seem to tolerate it if everything else is low histamine (not with the marmite though!).  Fresh cheese e.g. quark, curd cheese, ricotta, mozzarella is okay for me.  Therefore instead of having a salad with walnuts and blue cheese I'll swap it up for hazelnuts and curd cheese, with a tiny bit of celery salt for a bit of zing.  I can tolerate quark and creme fraiche instead of yoghurt.

If you keep a detailed diary of food and your symptoms hopefully you can identify the swaps that work for you.  Last night I experimented with roasted peppers on baked polenta slices with ricotta and a bit of vegan pesto (from a jar).  It was really delicious, but I think I'll use less pesto next time (or make it myself) as it wasn't great for my symptoms, but still tolerable.  Roast veggies are great - I make my own fresh humous that's delicious with them (the shop stuff is no good).  Thick hearty soups and stews are good this time of year (and quick in a pressure cooker, and even quicker if you use frozen veg to skip the prep) - I'm going to have a go at making some gluten free dumplings to go with them this week.

Tonight I'm thinking of something simple and comforting as it's a bit of a miserable day - a potato bake with onions and the remaining ricotta, served with some kale (with butter and carraway seeds).

For sleep I find following a yoga nidra really helpful (and easier than meditation) - there are lots online, or you could try the 'insight timer' app.  The free mini course on this website has some sleep tips that might help https://www.morganadamswellness.com/?cid=0ce43e9d-a9c0-4251-95c0-e79477761e3d.  My sleep routine is about 2 hours long (although I don't have kids to look after) involving a warm bath, listening to relaxing music (radio 3's night tracks is amazing) whilst I spend 15 mins on duolingo to try to help my brain fog, followed by 30 mins on cross words / sudoko (for brain fog), reading something interesting (but not too gripping or exciting), followed by some breating exercises, a yoga nidra, and maybe a relaxing 'sleep story'.  On bad nights I'd just do one yoga nidra after another for hours, and I did feel more rested than just tossing and turning, trying to sleep.  I'm sure there are other tips on the forum that might help - maybe 'tapping' meditation for sleep (I find it magical for anxiety).

I really hope your symptoms improve soon.  Thinking of you and sending kind wishes.  You will get through it eventually (may nan always used to sing the Lena Martel song 'one day at a time' to herself when I was little, now I understand why!)

[CLKD]

Tnx for the explanation.

Up until a few years ago I could eat more or less what I wanted  then found that some foods caused severe bloating with nausea.  So by trial and error, more error initially  I cut out shop bought cakes and biscuits.  For me I believe it's the hidden sugars, fats and other 'nasties' in processed foods that make me feel really ill, in fact I over indulged in a 'hamper' of goodies at New Year and BOY!  never again   

I also have to eat little and often so that there isn't a gap in energy levels.  Otherwise  .  DH read Chris Van Tulleken's book about how humans in the 1st World have been drawn into fast foods and how the Companies concerned with keeping us fed, actually use items that wouldn't B found in a home kitchen or professional Chef's receipe book. 

Some give the gut false hope in that what we eat isn't filling at all so the gut craves more and more in order to feel 'full'.  But it doesn't work which is why people are putting on weight without being aware of why.

It would take a strong person to separate me from my chocolate ;-).  And I have long given up beans, i.e. in chilli con carne because they made me really bloated for days  .  Bloatedness takes about 2. hours when I forget !!! and means that it can be 5/6 hours B4 I can face food.

[CS24]

Thanks all for your messages.

I am quite down about all of this. Up until end of August I rarely had any significant symptoms with histamine intolerance. I might have had the odd night of trouble sleeping, or headaches or a rash but that was it. I have had fertility issues. In fact I felt good until my oestrogen dosage was increase significantly and that is when things have gone down hill. I am just struggling with why I have it so badly all of a sudden.

I could eat all of the foods albeit with some minor symptoms.

I have removed most of the foods that newson provided me with that are histamine intolerant and that with vitamin c, antihistamine and magnesium has helped me get some of my sleep back.

I am struggling with food as it does feel like extra work and a little all consuming. Yesterday I had battered fish as I thought that would be ok as it was fresh but then saw in a random site someone saying fried fish is not good and high in histamine.

Am I stuck with this for the rest of my life or will it go away?

When I look back at my life I realised I wasn’t taking some of those foods and recently added them into my diet like sourdough, coffee, peanut bars, procutto ham, bananas, dairy, match tea, green tea, fermented food. It am just so frustrated as I love food and I like easy recipes.

Peana thank you for your messages. You seem so ok with it unlike me. I am keeping a diary of food and have a call with a nutritionalist next week. X

[CLKD]

Sometimes we over think  .  It mayB that gradually your system has been overwhelmed by the additions even though we are told that most of your choices are 'good for us'. 

I had to avoid anything with onions in for many years or I was on the loo within 8 hours  it was easier to say 'no' to anything that had been near an onion!   - when would U expect 2 react to the fish meal?

Perhaps eating items that you know are OK for a few months will leaves more brain space for deciding which to have as a treat or which to cut out completely.  Expecialloy as we are approaching the 'festive' season  . 

I love the smell of coffee but it makes me highly nauseous  .  MayB cut out the fermented foods first?  Overhaul your whole daily intake of food and drink so that you have something to discuss with the Nutritionist.  Make sure that she knows a bit about menopause too.

Chocolate is known to cause headaches .......... my friend would be housebound for days if she even had a small piece, cheese too affected her.

Let us know how you get on.

[Peana]

Hi CS24, good luck with the nutritionist, hopefully it'll help you with your food choices.  Funnily enough, we had to go into town yesterday, so I treated myself to a haddock wrap for lunch to see how I get on with it.  Unsurprisingly I slept poorly, was exhausted this morning, and also had an upset stomach.  However, I've decided to frame it as a 'food hangover' - I might have fish occassionaly again but, like having drinks on a friday night when there is no work the following day, I'll eat it on a day when I haven't got much on the next day, and probably have a small portion too (although it's quite a long while since I had drinks on a friday night!).

I'm trying to use my CBT methods to reframe things as an interesting challenge to find new tasty and convenient recipes.  Today I tried piperade for lunch (sauted peppers with scambled eggs), which was lovely and quick to prepare (although I'm lucky to work from home).  Tonight I'll try a risotto (maybe leeks, not sure yet) with some ricotta.  Eating out is more challenging, but we don't do it very often, so I can plan to be very strict with my low histamine foods beforehand. 

Good luck

[CLKD]

My gut won't tolerate eggs in any form so I miss out on several meal choices.