Food after ET diagnosis.

[Exeter21]

I have read everything on diet re ET & Hydroxycarbamide which I take. Can anyone help with anything we can eat instead of the fat & saturates in all on the supermarket shelves. Even vegan spreads have the fats etc. Also None dairy yoghurt contains live culture which is not allowed. Usually healthy & fit with sensible diet but lots of that now to be avoided. I have oatmeal milk which is ok . Missing my flapjacks as fat filled . Many Thanks.

[Mostew]

What have you read about diet?

If you are thinking of the Mediterranean one , I would say go VERY easy on sugar including fruits. But the odd homemade flapjack is fine ... I use half coconut oil half butter in recipe . Also some stevia to eplace some sugar.

I make a great easy buckwheat fermented bread and use a little ghee on it which is a beneficial form of butter . It's clarified .

But if havnt got any . Butter .

I m not aware of info on live cultures . Please let me know .

Avoid ready made food as much as you can .

Don't have to spend much time doing a simple meal with beneficial herbs and spices . ie. Ginger , tumeric

Most of all enjoy food even when you have 'slipped' from ideal diet

Stress is probably worst thing ........ it's a hard one .....

[Exeter21 in reply to Mostew]

Many thanks I try that. I have been told no fat no dairy no caffeine no citrus no alcohol no live culture yoghurt etc. So have been eating fish mainly loads veg potato plus anything else not listed. I recheck with Haemotology next week . 👍

[Mostew in reply to Exeter21]

Did heamatogist give you that advice? In a way I'm impressed they are saying ANYTHING about food but......If you like red wine it's good if Limited to a small glass a day. One or two good coffee fine .

Have you any other health problems rat may have lead them to the recommendation s ?

[Otterfield in reply to Exeter21]

Nobody can live healthily with no fat. When I was on Hydroxycarbamide I had loads of olive oil and oily fish. I also has dairy, including butter and live culture yoghurt. Citrus is fine apart from grapefruit which is the case for a lot of medicines. Some treats are fine, like chocolate, but not too much.

Please check again with whoever has given you this advice.

[Exeter21 in reply to Otterfield]

Thnx I will ask again . I do use olive oil & eat oily fish but they meant fat in products listed on foods & vegan spreads . Thnx for help.

[Deefen in reply to Exeter21]

Maybe they meant the fats in baked goods etc which are often high in trans fats and VERY inflammatory!

[Exeter21 in reply to Deefen]

I was told no dairy fast foods pizzas trans fats caffeine etc I don’t eat those anyway . I am only 63 kg normal for height no health issues . It was only diagnosed from a sports injury when bloods checked . Thnx I check it out at next appointment. 👍

[Joetcalr in reply to Otterfield]

Hi, I have I've heard before about grapefruit, but never been told to avoid it. I would have thought that if it thins the blood naturally that would be a good thing? Jo

[Wyebird in reply to Otterfield]

Yes it echos my new eating plan. Tuna is not considered healthy because it’s had the oil drained from it. I’ve been told to add organic one source olive oil to it then it’s fine

[Cja1956 in reply to Exeter21]

I was diagnosed with ET in 2008 And looked up diets, as well. I can tell you that some years later I developed IBS and I did cut out sugar, carbs, and dairy. I lost so much weight and I became so weak and fatigued that I had to stop. I just think that eating a well-balanced diet in moderation is all you need. Drink lots of water and Try to find a functional medicine doctor that can point you to the right supplements that you need to take. Just some friendly advice. Good luck to you.

[Exeter21 in reply to Cja1956]

Many thanks great information I will stick to my usual food & the gallons of water thanks for input . 👍

[Deefen in reply to Exeter21]

Really? I’ve never been told that there’s foods we should eliminate? Just that’s it better that we eat an anti-inflammatory diet? That usually means avoiding grains, sugar, seed oils etc - anything that causes inflammation. But many fats are very good for reducing inflammation - olive oil, butter, macadamia oil, avocado oil etc

[Wyebird in reply to Mostew]

Lol I echo that

[piggie50]

I’ve had PV for 15 years and eat a normal varied diet. Meat, fish, veg, etc. I don’t understand the information you have been given?Love your name, do you live in Exeter? I do.

Best wishes

Judy 💐

[Exeter21 in reply to piggie50]

Many thanks Judy worked Exeter live Budleigh . Glad others share information as couldn’t find anyone who had heard of ET other than on the big screen 😱. Let alone anyone who had it . This site is very informative thanks . Julia 👍

[Pte82 in reply to Exeter21]

Exeter21, I agree with piggie50. It's all about REAL food. As Mostew ended.. it's more about controlling stress and I might add inflammation. The probiotic Bifidobacterium infantis 35624 not only is an anti inflammatory but can be beneficial for psoriasis. Magnesium is important for stress relief and also keeps platelets from sticking together. Check out the benefits of curcumin especially enhanced absorption but as always check with your health care professional before using any supplement.

[Exeter21 in reply to Pte82]

Thnx so much I will do that 👍

[piggie50 in reply to Exeter21]

I was the same when I was diagnosed, I found this site and MPN Voice invaluable at that time.I love Budleigh, I’ve spent many an afternoon on the pebbles, under a sun umbrella of course 😂.

[Exeter21]

Yes watching the sea is a good healer 👍🤩

[Dazakella2010]

I’m under professor Harrison at guys and she has never mentioned anything about me having to change my diet.

[Exeter21 in reply to Dazakella2010]

Thanks for the information 👍

[Smudger0122 in reply to Exeter21]

Hi Exeter

I to have recently been diagnosed with Essential Thrombocythemia Calr.

Diet or certain foods consumption was never mentioned to me, i was told to just drink lots of water.

Hope this helps.

Smudger

[Michali45 in reply to Dazakella2010]

Me too and I have never been told to change what I eat! I try to eat a well balanced diet but love my chocolate! I’m too old to worry about eliminating food I like! I do exercise well though and am well within an acceptable weight

[Dazakella2010 in reply to Michali45]

Exactly…. It’s never been mentioned to me once… and I’m being cared for one of the best 😄

[Mostew in reply to Dazakella2010]

Diet should be mentioned always for health problemsConventional medics not trained in importance of nutrition and effect for individual

[SammieLou]

I have had Et JAk2 now 11 years and have found sugar effects me by far more than anything as in chocolates cake etc, fruits seems ok. Moderation in everything I would say, I eat well but don’t cut fats out or dairy … I cannot have caffeine from contracting compylobactor in 2002 … infact I think n this triggered ETLive your best life each day just be mindful xx

[Exeter21 in reply to SammieLou]

Thnx v much 👍

[DoubleF79]

I certainly wasn’t told anything about what to eat or not to eat whilst on HU. Obviously a balanced diet is beneficial.

Do you have other health issues which mean you need to watch what you eat?

[Exeter21 in reply to DoubleF79]

Thanks no health issues ran ,gymn,cycled etc . I recheck at next appointment thanks 👍

[Mufftreacs]

Good grief Exeter 21. Poor you, you must have thought the world had come to an end!

I have had ET since 2005 and am nearly 81. Everything in moderation and enjoy your life. Stress is the problem for most of us.

When I was diagnosed all those years ago there was nothing mentioned about diet so I just ate as always, in a sensible fashion. I do eat some dairy, live yoghurt and sometimes have a glass of wine. I tried a vegan diet at one point and gave up after about 4 months.

Don't worry too much, Just don't allow yourself to get overweight and enjoy the odd flapjack. I love it too!

[ChillyAsh34 in reply to Mufftreacs]

I am same as you at 71 glass of red wine fruit veg etc keep weight down walk every day

[Exeter21 in reply to Mufftreacs]

Thanks that’s good to know & a glass of red 👌👍

[HazeBlue]

I eat what I fancy . Moderation is the key. Got bough to worry about without not having a treat to eat. I’m not fat not thin but at 73 I think I deserve what I like. Good luck .

[ciye]

I have never received and dietary advice.

[Ratton726]

Diet never mentioned to me either (diagnosed 2 and half yrs ago ET) - I try to watch my weight anyway.Not too many treatsExercise is the best thing - lots of walking (if its not a problem) bit of yoga etc etc.

I am 76!

[Exeter21 in reply to Ratton726]

Thnx yes I do yoga & pilates thanks for information 👍

[Aldebaran25]

Hi Exeter21, the official advice is to keep a healthy lifestyle, which is obviously open to interpretation! As long as one is sensible and does not exceed in the fat/sugar/salt department, with a moderate alcohol consumption (smoking not even mentionable!), then I think it is alright. The mediterranean diet is sometimes mentioned, to suggest less red meat and animal fats. Personally I avoid industrial products (prepared foods and spreads etc.) or stuff with additives and opt for the simpler home-made options. I also tend towards organic but recognise it is often quite expensive.

[Exeter21 in reply to Aldebaran25]

Thanks yes I have been doing the same 👍

[ladyanello]

Look at Dr Robyn Scherber's work. She does in depth study on the area.

[Exeter21 in reply to ladyanello]

Many thanks I look it up 👍

[Wyebird]

Hi I’m just diagnosed pre diabetic. So I’m now doing a healthy eating zoom programme through the nhs. In — Is organic virgin olive oil, organic butter and Rape seed oil. Reason is they have nutritional value.

Like wise for brown bread rice and pasta because the white is absent of loads of nutrients

Eat Loads and loads of veg especially green, sweet potatoes instead of white.

Watch your calorie intake.

As a result I’m losing weight slowly with minimal effort and on Tuesday at clinic my haemoglobin has jumped from 103 to 111😀.

Time will tell if it’s the Peg I started last June which for the last 6 months increased my haemoglobin from 93 to low 100s or this eating plan

or a combination ?

[Exeter21 in reply to Wyebird]

Thnx for that information 👍

[Mostew]

Buckwheat and quinoa and oats are good grains

[Exeter21]

Lovely I will try those thnx 👍

[Stripecat]

Dear ExeterI have had ET for many years and now have progressed to MF

I am still relatively healthy and do what i want

I eat whatever i want I drink alcohol and enjoy life to the fullest

My mantra after I was diagnosed with ET and MF , this is after a battle with bowel cancer, is that I would never deprive myself of anything I enjoy.

Please don’t not overthink everything and spoil yourself sometimes.

[Exeter21 in reply to Stripecat]

Thanks I will 👍

[Scaredy_cat]

Re grapefruit. It contains a chemical that stops certain drugs working properly. It also applies to Seville oranges in some marmalades. This applies to Ruxolitinib but also to some non mpn drugs

[Wyebird in reply to Scaredy_cat]

Oh no love strong marmalade

[hunter5582]

I have never heard of a diet that is that restricted related to MPNs. Most of what is in the literature is in support of an anti-inflammatory diet, most often a Mediterranean diet. You must have some fats in your diet to remain healthy, bu tthese should be the healthy fats. Flavonoids and antioxidants are definitely beneficial. There is nothing wrong with live cultures of probiotics in your diet. Maintaining a healthy microbiome is essential to health. Alcohol and caffeine is OK in moderation. It is true that you need to limit alcohol when you are on hydroxycarbamide since it is hepatoxic and nephrotoxic.

The bottom line is that when managing a chronic disease nutrition is important. We have to provide the proper fuel for our body to function properly and stay in balance. We cannot afford to put many of the toxins we find in the food stream into our bodies. Pesticides, hormones', antibiotics, BPA, and xenoestrogens are all among the things we need to avoid.

Here are some links to good information of diet and MPNs

mpnresearchfoundation.org/w...

mpnvoice.org.uk/living-with...

patientpower.info/myeloprol...

youtube.com/watch?v=sThHC72...(Not working as expected?)

youtube.com/watch?v=lw3xleI...(Not working as expected?)

[Exeter21 in reply to hunter5582]

Really good information thanks. I will read the links 👍

[sp1946]

I have been diagnosed with ET for 5 years now. Over that time I have seen quite a lot of different Haematologists (in 2 different countries) & nobody has said I must avoid certain foods. On the other hand I have a close friend who has PV & her Haematology Professor has told her never to eat any food which is red or green in colour! No red meat (I get that maybe), no red wine, no tomatoes, no red or green peppers, no strawberries, no green salad, no peas, etc. etc. It beggars belief!

[Exeter21 in reply to sp1946]

Thanks I was told lots fish green fresh vegetables etc . But it appears from all comments on this link that everyone appears to have been given no dietary instructions. Thanks 👍

[Runner999]

The advice to “follow a Mediterranean diet” is really a generic way of saying eat more fish and veg. And more olive oil than other fats. But remember lots of cheeses, pasta and pastries are also eaten around the Med! My mantra is to eat anything in moderation, and apart from the odd biscuit we eat few processed foods.

Not sure at all why you think you can’t have live yoghurt! Are you confused with not having live vaccines?

[Exeter21 in reply to Runner999]

Thanks, it said live cultures also no dairy processed foods fast foods etc I eat healthy already but assumed the foods mentioned had some bad effects on the blood . I will stick to my usual food it seems & check at Haemotology again thanks .

[Meatloaf9]

4 years ago I asked my MPN specialist if I should follow any diet, he told me then it did not matter what I ate (then ET age 68). Now 72 PV, last December I asked the same question and he said there is some evidence that a Mediterranean diet could possibly be helpful. Just my experience, not advice. At 72 and with PV I am going to do whatever makes me happy, life is too short.

[Exeter21 in reply to Meatloaf9]

Very True . Thank you 👍

[Pte82]

Exeter21, one thing to focus on in any diet is digesting it. As we age certain nutrients like protein become more difficult to digest. We have a marvelous digestive system connecting the brain with the gut for control through the vagus nerve. Thiamine activated by magnesium is needed by all three, the brain, the gut and the vagus nerve, for maximizing the nutrition from your diet. Just like magnesium is subject to loss through a lengthy list of causes thiamine runs a similar gauntlet called anti thiamine factors that diminish thiamine. The stuttersence link contains a comprehensive list. The other attachment has a good explanation of thiamine's role in digestion.

stuttersense.blogspot.com/2...

eonutrition.co.uk/post/thia...

[Exeter21]

Thanks interesting information I will read link . 👍

[Borage]

That sounds like a load of faddy twaddle! Exeter21

I cannot have grapefruit because I am on statins.

As for the rest, I eat home cooked food made with real ingredients which my grandmother would recognise, in the portion size she would have used, with small amounts of meat and plenty of seasonal vegetables, and avoiding snacks.

Highly processed stuff is not real food.

Eat food, mainly plants, not too much.