So after extensive reading of posts and articles the general consensus is to reduce the chances of progression and symptoms of et eat an anti-inflammatory diet this includes eliminating nightshade veg such as potatoes, tomotoes, peppers and abugines. One of the alterative to no nightshade veg is sweet potatoes which in actual fact are a no no due to the vit k levels which increase platelets? Spinach kale and broccoli is to also to be avoided or eliminated due to the vitk levels.
My diet this week has been mostly salad some home made soups and fruit. The good news is I've lost a bit of weight🤩the bad news is I'm starving and bored and no longer look forward to meal time🤔 soooo on reflection my decision is to try my version of the above with a low rather than no carb diet. I will take on board some of the well researched food informative I've read on here like eating some fumented food which appears to be really good for you but I don't think I can be as strick with my diet as some fellow suffers are however I do take my hat off to those that can.
Never thought I'd crave a tomoto but here I am doing just that🙄
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Camelian
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I had no idea that those of us with an MPN were to avoid things like kale, tomatoes and sweet potatoes because of vitamin K levels. Wouldn’t we have to eat a huge amount of those foods to get to a problematic level of vitamin K? I’m hoping folks will weigh in here on this.
Yes. Kale is vile and causes so many digestive problems for me. All other veg I eat but never overdo any of them. Isn't that the key to good health? I started making my own bread so i know it's free from Sulphites and the difference that has made to my breathing is immense. Also eat fish and sometimes (very rarely because meat has been out of my diet for years) a small amount of chicken. Exercise and keeping stretched and supple also helps with the aches and pains. These two together are working for me to the extent that when I don't do my exercises I get the pain. When I don't watch my diet, I get the pain. It isn't easy to get used to it but it does work. All the best to all. P
I’ve always been told to eat a healthy, well balanced diet. I eat all those things and I’m doing good. PV 12 years plus! I think you would have to eat a huge amount of these foods to be any detriment.
Life is too short not to enjoy the food you eat. I also have a glass of wine and chocolate when I feel like it. Lighten up and eat what you fancy 😁
You raise an interesting dilemma, balancing healthy diet with avoiding excessive iron.
I started trying to minimise iron/Vit K etc but now think that a balanced diet more important. We need iron and and K and long term low levels may be harmful. I posted a link a couple of days ago re Dr Silver/Interferon. He advocates early adoption of INF, primarily to (hopefully) slow progression but also to reduce venesections and boost iron levels. He is concerned re the damage long term low iron can inflict.
And the bonus is we should feel less fatigued
Hence I now try to avoid excessive iron but no more. Eg my breakfast is porridge made with coffee, I add in flax seed, chia seeds, very dark chocolate powder (all high iron) but crunch in a calcium tablet to reduce absorption. The milk and coffee also inhibit absorption as does my mug of green tea. I eat loads of leafy greens etc
I stopped taking chia seeds to see if I felt any better as too much iron causes fatigue. ( I had loads of the stuff but still anaemic. ) well I haven’t felt any better so I’ve gone back to them. Just maybe I need to have a high iron level to get a haemoglobin level above 105!!!
So cheesed off with trying different strategies. My latest being a new fitness regime.
So after telling the physio at fatigue clinic that an exercise she was giving me was not very exertive she upped the intensity. I’ve now been aching for 4 days🙄. That will teach me to be quiet lol..
There are different kinds of anemia. I have beta thalassemia and this type is in born in some cultures of the Mediterranean region. I have more than enough iron, but still have anemia. The Asian countries have Alpha thalassemia. Same case with them. Please check if you have one of these, especially your heritage is from these areas. : )
Thank you, I’m only just outside the upper range. Heamotologist don’t seem to be concerned with my iron level. I’m just fed up with the fatigue which I could most probably cope with if I wasn’t anaemic.- I’m welsh
Hi Wyebird, from what I’ve read in the forum until now. Most of us have fatigue. My was getting worse for years. Then I was diagnosed. The meds (Anagrelid) made it worse. Banning all environmental toxins (in foods, cosmetics, cleaning agents from my home, etc) helped me a lot, a CoQ10 capsules daily gave me back a lot of energy. We must take time during the day to rest. I’ve read that everywhere. Do done tasks. As soon as we feel a little tired, stop, feet up for a bit (that must be different for everyone) then go again. That helps me a lot too. Cheers
We have been eating lovely home grown potatoes for the last two months, and I think that the satisfaction of the yummy fresh goodness of a humble home grown spud served up with a dollop of real butter is of enormous therapeutic value both for mind and body! So I won't be giving such things up any time soon!
I’m afraid I’m in the ‘all things in moderation’ and ‘a little bit of what you fancy does you good’ camp. Besides you’d have to eat a LOT of kale etc for it to have a detrimental impact. And quite honestly, who is prepared to torture themselves to that extent!
I'm confused. I hear so many different things from so many different people about what to and what not to eat that I don't know what is best for us all. Does anyone have any scientific articles that actually say what we should avoid. I only know that the mpn specialist that I saw 6 months ago said that it doesn't matter what I eat or drink. Any advice is appreciated. 69 yo male ET moving toward PV.
Here here!!! there is definitely a lot of different opinions on what to eat and avoid and lots of people on here just eat a balanced diet. I like you would love some clear direction and. If there is any scientific articles it will be interesting to read then and hopefully gain some guidance. On what to eat and what to avoid.
Hi Camelian. Glad you’ve made a step toward a diet. From what I understood, you are not getting enough calories. I have been studying diet and the autoimmune system, since the week I was diagnosed 18 mos. ago. We now know that Auto Imm plays a great role in our illness. I always assumed this and that’s why I embraced this diet with unbending will power.
I’m on the AutoImmune Paleo modified for me, since October 2017. I eat no grains except some rice and a bit of oats. All others cause me distension and brain fog and fatigue. No milk products except for a bit of feta cheese for the sMe reasons. No night shades, which was crazy, since I’m Greek! But I managed. I now eat more calories than before and have lost 16kg in that time. Most importantly, I was able to reduce my Anagrelid from 6 to 4 pills a day. I have Hashimoto. I was able to cut my T4 hormone doses by 25%. Many other problems slowly left my body through this. Cholesterol is beautiful, liver is clean, spleen is back to normal, histamine intolerance is gone, eczema is gone, incontinence is gone, dry eyes and nose are no longer dry, most of my tiredness is gone, despite the meds, I sleep much better, my depression tendencies disappeared completely, dizziness and discoordination is gone, brain fog is almost completely gone, I’m no longer prone to colds, which I constantly had and could not get rid of without antibiotics, distension is gone, diarrhea/constipation at gone, hunger pangs no longer exist, I look much younger, the whites of my eyes are now white and not yellowish, joint pain and hair loss stopped. The changes in my family, who made their own decisions to followed me have been incredible. Especially for my daughter, who’s on the spectrum!
What else can I say? Should I not trumpet these news loud and clear? That would be selfish and unfair to everyone. I’ve spoken about this often and was even faced with upsettedness from some. Nevertheless, I will repeat some important points.
Important is that every single person is different, has different needs and the diet must be adjusted to fit each in order for it to be effective. A good, knowledgable and caring dietician working together with a knowledgeable doctor, must accompany such a change. The nutritional change must be a lifestyle chance. There’s no one diet for everyone. This diet’s goal is to avoid any foods that cause inflammation in the body; usually grains, milk products, night shades, GMOs, sugar, produced and packaged foods, junk food, vegetable and sunflower oils, food additives, food packaged in plastic, which leech phthalates, xenoestrogens, preservatives, no soft drinks, artificial sweeteners, etc. Then one reduces any foods that cause allergies. I try to eat as much organic as possible. The change took a while. The first 3 weeks were really hard, then my body got used to burning fats instead of sugars/carbs. The pangs were terrible, but I stuck to eat, with my fight for my health in mind. We tried to identify deficits in vitamins, minerals, enzymes, etc. Then I was given supplements: Magnesium, Zinc, B6, Selenium, Vitamin D!!, L-Glutamine, Vit C, CoQ10, bone broth simmered 24 hours, to heal my gut, a great fish oil 2tbsp/day to reduce inflammation, nettle tea to balance the ph in my body. I eat great meats and fish, but not too much, just small portions (I buy from a farm, where I know the animals and what they eat), 1-2 eggs a day, tons of veggies & fruit, which I at first ate only cooked to help my digestion. I drink coffee, eat 85% chocolate which now tastes sweet, and lots of nuts (no peanuts or cashews), much more good fats, olive, coconut and pumpkin seed oil, butter. I just started and made up all kinds of recipes as I went, never trying to imitate food I was eating before (that’s a trap) just bought all kinds of things I’d never bought before. But!! Sweet potatoes, papayas, broccoli, etc. did get my thrombos to shoot up!! Beware. One medium/small sweet potato 5x/wk did it! We get enough vit K from other veggies, but broccoli and spinach are packed with it. Vit K acts as a fertilizer for our thrombos. My ET doc. was sceptical. He just doesn’t know about diets. Hardly any of these doctors have learned about this except those who studied this out of interest. The right food intake is the most elementary way of giving your body what it needs to be as well as possible. No science can even come close to what nutrition can do, except in emergencies and some diseases. Changing your nutrition is a long haul thing. You must want to get better, be prepared to embrace this as a good thing and swim against the stream. it is really worth it! It’s helped me immensely. I never thought I’d be so much better and happier. Even after I got diagnosed with ET. Once I get the 20+ mercury fillings that I’ve had since I was 15, properly out of my mouth, and stabilize my detox pathways, I will let everyone know what is happening with me. My ET doctor is quietly waiting curiously to see how I will further develop. I’ve always been a passionate person and terribly curious. I will continue to search and learn. I really hope you can find the right dietician/doctor to help you in this! All my best wishes!
Thanks anag that's a lot of information and I can tell you've done a lot of research into diet ET etc. My heamotologist said to eat a healthy balanced diet and that was about it? I think I tried to change my diet to quickly from what I was eating to an anti-inflammatory diet and without knowing how and what I could have for my meals. I've now decided to make slow steady changes to my diet. I've sent off for a book called an anti-inflammatory diet for dummies so hopefully after reading it I'll have a bit more understanding. I've also ordered a anti-inflammatory receipt book to give me some meal ideas so hopefully I'm on my way to better health. Coincidentally I have a lot of the symptoms you mentioned in your post so I'm now hoping some will go after eliminating some of the bad foods you mentioned.
That’d great! This is a lot. Can be overwhelming at first. Step at a time. As they say in the States: base Hits ein the ball game! Dr. Tom O‘Bryan is a Great place to start. There is lots on free info. thedr.com
I simply cannot except that it is healthy to reject the majority of vegetables that are well known to be good for the body In so many other ways. I understand desperate times calls for desperate measures but this is too far…
Don’t forget that after tomatoes were brought to Europe in the 17th C, the Italian rejected them for 200 years because it caused them illness. Then they discovered that removing the skin and seeds was good. That’s also the secret to their great pomodoro. When we lpok carefully, we see tomato peel in our poop. Taxing for the digestive system. When I eat tomatoes, eggplant, peppers, my mouth burned. On the other hand, I have never eaten so many vegetables as I eat today! 8-12 portions a day. Lots of root vegetables, bitter greens, everything I find in the market. There are dozens of possibilities. A key is to look at what the ancestors hundreds of years ago ate.
As far as I know, our anti-inflammatory diet can include all nightshades bar potatoes and sweet potatoes. I’m following the version which was developed specifically for MPN patients as part of a trial, and it is different from the more standard anti-inflammatory ones found online. If you’d like me to email it to you let me know, as it’s no longer available on the trial website.
Hi Lucy I've had a look on my profile page and can't see anything? I'm not great with technology so it could be staring me in the face. I know you can private message because I've read it on people's posts but I'm lost as to how??
Can anyone give me a step by step on how to private message ?
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I'm very interested in diet. I've been a vegan for about 30 years and always consumed what I thought was a healthy diet with lots of fruit, vegetables, seeds nuts etc. My down fall has been processed veggie burgers and pies, veggie sausages. All convenient but probably not healthy. Please email the diet advocated in the study.
Hi Pepper2nd, It is usually suggested to cut out any possible allergens for at least a month and then one by one, adding foods very slowly to notice changes in body, fatigue, brain fog, etc. Also checking what the blood is doing! Sweet potatoes and papaya made my thrombos go up 250,000 in a month. As soon as I stopped, they went down again. Every person has a different constitution and sensitivities. Other than our meds, repairing (not boosting!) the immune system is the most important thing. Having a professional doctor or dietician or both to help you along is very advisable. It took me about a year to really find the right foods for me. Good luck.
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ET progressing - blasts present?
Now something else to contend with 🤪
I had great news today ,,my ultra sound scan was really good ,after a years break .
Update 5.9
