Diet jak+

[Cathy426]

Has anyone with MPN jak2 positive ET seEn a nutritionist or holistic dr? I feel like I need to change my diet to lower platelets but I have heard that green such as kale that contain vitamin k are not good for blood clots. Any thoughts?

[francesb]

Hi, I haven't seen anyone like that but am interested in nutrition and eat a very healthy diet. My consultant told me I cannot make any difference to my platelets through diet changes as they are caused directly by marrow proliferation. I'm always researching and interested though! Best wishes, Frances.

[Mazcd Partner MPNVoice]

HI Cathy, this information on our website might help you

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

Maz

[Cathy426 in reply to Mazcd]

Awesome! Very helpful.. Thank you!

[Juliet46 in reply to Mazcd]

How do I write a new question on this website, please ?

[Mazcd Partner MPNVoice in reply to Juliet46]

hi Juliet, to start a whole new question or comment - on the top ribbon you will see a Home icon with a house next to it, click on there, then you will see What's on your mind?, just click in there and you can either post or ask a question. Maz

[zvinkovic]

Hi,

As Frances wrote, you can't make a difference through diet, but you are right about vitamin K. It is a vitamin that helps coagulation and form a clot when you cut yourself, but it doesn't mean you have to completely avoid kale, spinach or lettuce, just eat it in normal amount. Also herbs like ginseng or ginkgo that promote circulation are not advised to take when on aspirin as it can cause bleeding.

So, there is not much you can improve with diet, but there are some stuff that can worsen your condition.

Best wishes,

Zlata

[Murdoch01 in reply to zvinkovic]

What are the things that worsen the condition?

[beetle]

My understanding is that there is actual research going on in the USA about diet and MPNs but there are no results as yet. Best wishes. Jan x

[LucyGeering]

Hi Cathy,

As the others say below, there's no evidence to suggest that dietary manipulation will lower platelets, and we have to be careful about eating certain foods which will exacerbate the condition. On some of the other support sites I've seen talk of following anti-inflammatory or Ayurveydic diets, but no-one seems to quite know what exactly these are or what they do, and their benefits seem to be unsubstantiated hearsay rather than scientifically proven. What I'm doing is trying dietary manipulation to see if it helps alleviate some of my symptoms, with my doctor's agreement of course. ATM my counts aren't quite high enough to warrant going on chemo, so I reckon I haven't got much to lose! In my totally unscientific mind, I'm assuming that anything which is simpler to digest will help the blood do its job of delivering nutrients. But I'm very happy to be disproven!

Best wishes,

Lucy

[Paul123456 in reply to LucyGeering]

Lucy

I assume ‘easy to digest’ is basically an anti inflammatory diet?

I’ve not seen much discussion on the Board about iron consumption. I think the general advise from our hems is eat balanced diet, limit red meat, liver etc and avoid iron supplements.

I’m very aware of my iron absorption since don’t want to ‘fuel the fire’ but this is clearly walking a tightrope as iron a critical part of our diet. I tend to avoid mixing heme iron with fruits high in Vit C since maximises absorbtion. I believe that a good diet of whole grains, fruit and veg gives me sufficient non heme iron, despite the lower absorption rates. Adding in oily fish, flax seeds and dark chocolate should get me over the line. I don’t feel fatigued which is the acid test.

Coffee, tea and calcium tend to reduce absorption rates.

[LucyGeering in reply to Paul123456]

Paul,

I meant simple rather than complex foods - i.e. anything which isn't highly processed. Essentially lots of fresh veg, simple carbs, no alcohol or caffeine. I'm allergic to meat so haven't eaten it for years, but do eat fish, pulses, seeds and some nuts. I'm currently finding that cutting back on dairy produce is helping me a bit. This fits in with what you say about the things which reduce absorption rates. I'm still not sure what exactly an 'anti-inflammatory diet' is, or what it does - if you can enlighten me on that I'd be grateful. There's lots of conflicting stuff on the web. You're fortunate not to get the fatigue.

[Paul123456]

My anti-inflammatory diet sounds a lot like yours.

Omega 3 > Omega 6.

Ignore all oils other than olive and coconut.

Obviously no processed foods or refined ‘sugars’.

You say ‘simple carbs’? Do you mean gluten free’? I go for complex grains.

I’m not aware of conflicting opinions? Think my diet pretty uncontentious aside from lashings of red wine to keep me sane.

[LucyGeering in reply to Paul123456]

Hi Paul, I mean simple (i.e. unprocessed) starchy carbohydrates, like rice, couscous, potatoes. Complex carbs are pasta, bread, flour-based foods - processed carbs. Which fits in with your 'no processed foods'. The things I've found online about anti-inflammatory are conflicting in that they don't always agree about what constitutes an anti-inflammatory diet. I'm going by trial and error and trying stuff out myself! So if the red wine works for you... nice one

[Paul123456 in reply to LucyGeering]

Thanks for replying.

I’m still a bit confused, I assumed Complex carbs incl brown rice, wholemeal pasta, brown bread and Refined covered white rice, ordinary pasta and white bread etc?

Your Simple carbs mean as in original state?

I don’t view wholemeal flour as ‘processed’. Sausages yes!

I don’t know whether you get the pin prick itching that most of us get. I’ve been experimenting to see if I can control with diet. Tricky because so many factors, especially any impact from variable blood count/venesections. However so far I am noticing a difference between eating out at friends (usually ‘inflammatory’ food) and my home cooked diet of peas and blueberries. And not just that their food much tastier than mine!

[LucyGeering in reply to Paul123456]

Hi Paul!

My apologies - I checked and my terminology is very outdated! I guess what I classify as 'simple' is unprocessed - so yes, in its original state - and complex as refined / processed. But I need to get with the programme and update my knowledge on this! Please could you tell me what you understand by 'inflammatory' - what is it that becomes inflamed by certain foods?

I haven't heard of this pin-prick itching but it doesn't sound very pleasant... I've always had fairly pruritic skin, including hives from contact with water, and my scalp has started itching a Lot recently, which apparently is probably caused by ET.

[Paul123456 in reply to LucyGeering]

Lucy

Inflammatory foods incl red meat, dairy incl milk, all veg oil apart from olive and coconut, sugar, refined flour such as white bread and processed food as in packaged and pre cooked.

Wine is inflammatory as well but have to draw the line somewhere.

The itching is normally after bath/shower and in my case lasts about 5 mins. I’m lucky in that so far very mild. I’ve virtually eliminated this over last couple of months but not yet scientifically validated!

[LucyGeering in reply to Paul123456]

After more digging around online I've found that MPNs are also classified as 'chronic inflammatory disorders' - this is the first I've heard of such things! And explains why you and others are on anti-inflammatory diets. Forgive me for my ignorance, I'll continue to try to expand my understanding of these mysterious illnesses, and will give the anti-inflammatory diet a go for relieving symptoms. Did you go to a nutritionist for your diet?

[Paul123456 in reply to LucyGeering]

No, just Google.

I also read somewhere that Vit C beneficial for leukaemia. Worth trying to see if read across to MPNs and at least should reduce chance of a cold!

My view is everything I’m doing is healthy regardless of whether it’s helping my PV. Hence what have I got to lose

[LucyGeering in reply to Paul123456]

Fair enough - good luck!

[soisew]

I also have PV 9 years I am 75. meat has hemi iron Easily absorbed . Vegetables have no hemi iron Not easily absorbed. ( you MUST drink water about 2 qts per day

citrus vitamin C helps absorbion Calcium like milk with your food helps to block iron uptake

Down load a list of of high i iron foods and you will know what to avoid. There is no list for low iron foods. My Doctor has me on 1 aspirin .81mg (baby) I have days that I can outwork a 20 year old and days I do good to work the remote. Do what you can when you can and worry about it.