Some thoughts have been on my mind with a few days

[Bluebuzz]

Hi everyone.. I hope that all of ye are feeling good today.. Few thoughts on my mind with a few days.. Has anyone with Itp have psoriasis, there seems to be a link here from what I have read and I for one have the two diseases.. The other question is have many of you guys done a gluten-free diet and if you did, did it help you feel better or did it so absolutely nothing.. In my head there is something that we are eating that's causing this.. I'm not saying that I'm right but the more questions we ask might give us the answers to us being healthy again.. I started a gluten-free diet today and in 6 weeks I'm going to get my blood tested and so fingers crossed that my platelets will be the highest they have been in 2 years of testing I've done

[scaryteacher]

I don't have psoriasis, and my ITP wasn't caused by eating anything, but by getting pregnant.

[Bluebuzz in reply to scaryteacher]

Did your Itp go away after having your baby?

[scaryteacher in reply to Bluebuzz]

I wish. The 'baby' turns 22 this year, and the platelets have gone from 60-80 when first diagnosed to between 19 and 45 now.

[Bluebuzz in reply to scaryteacher]

Haha that's a big baby! 😂 I was just wondering because I was talking to a lady last week and she only had Itp during her pregnancy. I guess she was one of the lucky ones

[Sarah-Ambam in reply to scaryteacher]

Yes mine came back during both of my pregnancies despite splenectomy 5 years previous.

[Morgan]

Yes I have psoriasis, long before I had ITP, I got it when my father died before I married but after years of various treatments it disappeared because I was no longer stressed, only have a little now, mainly in my scalp. ITP came later, not long after having food poisoning.

[Bluebuzz in reply to Morgan]

You are one of the lucky ones, I wish my psoriasis would vanish!! Maybe some day it will.. Maybe it's because of my job which is stressful that's causing it!! Thank you for your comment

[Toughytoughy]

Your thoughts are right . We are starting gluten free diet for our daughter today.

Few tests are conducted today to confirm this under guidance of pediatric gastro enterologist.

Fingers are crossed. Parents get happy when they find reports of their childran all fine. And here we are looking desperately at various reports to give us a hint atleast..what causing ITP in her.

From next week , putting her for 2 week antibiotic course for H.Pylori bacteria.

I just wish .. efforts of these doc get fruitilize . Hematologist taking a big risk before starting any serious treatment and We are following him like a child . It has been 7 months since diagnosis of ITP.

If nothing works out then Azaron will be started for her .

[Bluebuzz in reply to Toughytoughy]

I really hope that it works out for your daughter.. I agree with you, I would rather try other things before taking medication, I know some people have no choice but take steroids and etc.. A healthy gut is 80% of our immune system.

[Topography52_-]

Tbh I am not following any diet due to the fact I have high cholesterol plus I rarely eat meat I am not a vegan just try to stay away from meat my choic but I just keep my diet healthy have a tipple randomly do not smoke I do need to be a bit fitter : ))))) I have not been told the do,s dont ,s of eating or drinking my lowest platelets count 21, platelets 45 yesterday I know my symptoms when they are getting lower but now I go with the flow its scary at first ( got diagnosed in December ) but you know what you can't let it define you I found that out from a lot of experiences on this site and very good advice as long as you still listen to your hematologist advice you will be fine .... I am going to a glamping tonight to have fun with my family and my doggies .... Take care : ))))

[Bluebuzz in reply to Topography52_-]

It's hard to exercise when our energy is low, I started back running a few weeks ago before I started feeling weak again, it gave me so much energy and a positive mind, I felt amazing again. I had sore muscles but that's a good pain 😂 The way I look at exercising is, it makes me stronger and when I my body gets weak again it's not as weak as it was before, it's like my a step or two above what I was, I'm climbing a ladder but it's slow, but one day I will get to the top of it.. Maybe I'm mad to think like this but it's helps to keep me focused.. Have a brilliant weekend with your family and your doggies

[Topography52_- in reply to Bluebuzz]

You could try yoga or pliates that's my next move or you could try screaming in a field I do this quite often .... Thank you I will enjoy :)))

[Tyneir]

Both ITP & psoriasis are considered autoimmune conditions...all of which are effected by your diet, stress & leaky gut most of all. Of course western medicine will not treat you holistically and tell you this, nor are they interested in finding the root causes of any illness, they are too cozy with Big Pharma. Therefore I suggest that you do some independent research as I did and consult a Functional Doctor and/or Naturopath (ND).

Before I was given the ITP tag in 2015, a few years ago I was given the Lupus tag. During that time, only after being treated by a Naturopathic doctor, did I become symptom free - understand this did not work over night but it was better than the pharmaceutical cocktail that the Rhuematologist just could not get right. I am again working with both my naturopath and functional doctor to work on what is REALLY going on internally to cause the ITP response.

Going GF is an absolute and bare minimum for any AI condition! I suggest looking up Dr. Amy MyerS & Dr. Axe...they have a lot of great information.

I hope this helps...

[Bluebuzz in reply to Tyneir]

Tyneir thank you for your message.. I started seeing a naturopath two weeks ago and she explained what she thinks is causing my itp, stress and a leaky gut, like you said were them. She was the one who recommended me to go on the gluten-free diet. So far so good on that.. Everything that she explained to me made sense.. I had a funny feeling before I met her that it was something that I was eating, but what was it?!! I know it's going to be hard, but after reading your reply has made me even more determined to do it now. Thank you so much for that 😊I was hoping that I would get a message one day from someone like you that has done what I was planning out to do! Even better, it has worked out for you.. How long has your itp been gone? Did your bloods go back to normal? Oh yeah, thank you for doctors names, I'll definitely check them out

[scaryteacher in reply to Tyneir]

I don't think there is enough profit in ITP drugs to interest big pharma, neither is it a 'sexy' enough condition to attract the funding of cancer, HIV, diabetes etc. If the docs tell Type 2 Diabetes patients to overhaul their lifestyles and diets, (which they do), then why wouldn't they tell us the same if it was proven to work? After all, the NHS would then save money on drugs etc.

[ItsRalphy in reply to Tyneir]

My extended family is full of autoimmune complaints. I am just beginning to research the benefits of a healthy gut flora... I did not realise it can affect so much in your mind and body. As well as Itp I have Rosacea and have found some research to suggest a link with Rosecea to gut flora. I am wondering if it may be the same with my Itp too. I just have to be careful to avoid all the 'fad' websites that sell miracle cures for £££££s. Maybe a visit to a naturapath would be beneficial.

[ITPAffecty]

Hey did your diet helped? Because of my stomach issues, I started gluten free diet too since 10 days. Just hoping it does some miracle. Good luck and let us know how its going.

[Bluebuzz in reply to ITPAffecty]

Hi everyone, sorry it's being awhile since I've been on this website.. I'm still on the gluten-free diet and I have found it very good. I've gotten stronger but my bloods have still dropped but not as much as before. I've went to my doctor to get a blood test when I had a flu but he refused to take my blood and told me to return when I was better!!! Weird I know, I've totally lost any bit of respect in him.. He doesn't have a clue nor has he tried to educate himself as he told me, that I am the only patient he has with itp.. Has anyone else tried this diet out

[ITPAffecty in reply to Bluebuzz]

Ohh. For me gluten free diet helped only to reduce some weight. But my stomach issue also didn't go away and platelets also still below 10k. So I have slowly started adding it back but anyway i will avoid cookies and cakes and processed stuff.