1 month in

one month in and i am in a much better frame of mind than i was at the beginning, I generally feel much better than i have for a long time despite the Prednisolone (or who knows, perhaps because?) I was on 40mg for the first week, then up to 80mg for three weeks and i will be dropping to 60mg tomorrow, but the effects i read about are largely yet to appear, save for waking up somewhere between 3:30 and 6 every morning and some very minor incontinence which is now clearing up and was really just an irritation.

Unexpected effects include a huge desire to get things done (washing,cleaning) which is very out of character and i have become very bad at sitting still, with a lot more energy.

The Diet:

Having read all of the following books:

Gut and Psychology Syndrome

Intestinal Health: Breaking the viscous cycle

The Clever Guts Diet

Gut: the inside story of our body’s most under-rated organ

Super Juice Me

Which all pretty much say the same thing to varying degrees, I decided to put myself on a Specific Carbohydrate Diet (SCD), and specifically i am following the super juice me 28 day juice plan but i'm also having an SCD breakfast, lunch, and evening meal, in addition to it. This diet has been an absolute revelation for me so far, I feel great, have lost 6kg (I'm 6ft and was 84kg) so i'm going to keep going with it for a while yet.

Does it help the ITP though? well the jury is out on that and i guess will be for a long time. my counts have been 3,9,13,25 over the 4 weeks so it really isn't responding quickly (in fact i'm not sure the steroids are doing much at all given how slow it is) but as i've never had any spontaneous bleeding even at 3 i'm relaxed about it at the moment and we will see how it goes....

The real point of this thread is

1) to give people new to ITP a little hope that its not necessarily going to be that bad (i know its early days for me yet but the first 4 weeks hasn't been bad and the Steroids have not been bad to me yet)

2) to document what i'm doing with diet so if it helps or not there is some record of it

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  • Thanks for posting......Can you sum up those diets in a nutshell/headline form? Thanks

  • Hi

    I'm strictly following:

    1) no processed foods or drinks, everything is coming from raw ingredients, oil, salt pepper.

    2) no grains at all (wheat,oats,corn,rye,quinoa...)

    3) no potatoes or starchy veg (except some juiced parsnip)

    4) no processed sugar

    5) no dairy (except homemade kefir and yoghurt)

    Mostly that translates to:

    Avocado, tomato, 2x poached eggs, salt, pepper, lemon juice and oil (olive or udo's choice blend) for breakfast

    glass of homemade Kefir for breakfast

    homemade Meat broth (chicken or beef) for lunch

    4 home made fruit and vegetable smoothies from SuperJuice me throughout the day

    fish or chicken, homemade sauerkraut and vegetables for evening meal

    Disclaimer:

    I'm not making any claims of miracle cures or treatments, and the cost of the fruit and veg for the juices is pretty high and logistically challenging to buy and store everything. but i do feel better now than i have for a long time despite the steroids (currently on 3rd week of 80mg Prednisolone) so i think it is absolutely worth it. I do now have a serious craving for fast food when i smell it, which is odd because i didn't before!

    It has become very clear to me (in hindsight) that i have had bowel problems for at least a year and the level of inflammation and bloating of my intestine has reduced hugely since starting this diet, so regardless of the effect on the ITP this can't be a bad thing. If you buy into the effect of gut health on autoimmune diseases it seems like a no brainer to try ,and it gives me something to focus on and control which i like.

    The other thing to note is that the diet and the juice plan use a lot of ginger and garlic which some say you should stay away from with ITP. I did back off them a little for a while but as i have had very few symptoms (no bleeding nose or blood blisters, no petechiae) and they don't reduce platelet count i'm pretty comfortable taking them (i did waiver at one point when the wounds from my initial (botched) blood tests kept reopening.

    thanks for reading!

    Mike

  • Thank you for the posts , very interested in your experiments.

    Thanks

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