Diet - started by JMB

Hi, I have been diagnosed for 2 weeks and are still getting my head around this! I didn't feel sick..... until I started on the Prednisolone tablets. I have been doing quite a bit of reading and was wondering if anyone has had any success changing to a gluten free diet or other dietary changes? Have there been any marked improvements in the way you feel? Any advice will be greatly appreciated!

Welcome. You'll find a variety of threads on the subject of dietary interventions for ITP, including removing gluten. There is no research suggesting that such changes have any sustained effect on platelet counts.

In my case, my hematologist found I was deficient in several micronutrients, put me on supplements, and almost seemed disappointed when my counts didn't change. Another doc put me on levothyroxine due to low thyroid function, and was also disappointed when my counts remained the same.

However, a number of people here have reported some success with dietary changes, including avoiding gluten and/or dairy or shifting to another dietary lifestyle (you'll find some threads on the paleo diet, for instance). Others have seen no improvement in their platelet counts.

I suggest going very slowly with such changes, and making sure you are medically safe to do so. What are your counts? Are there underlying or related medical conditions? Are you on medication or receiving treatment for unrelated medical condition(s)? These should be factors to consider before making any significant change in what you eat. ITP is often not serious, and hardly ever fatal. So take some time to learn about it in general and see what happens with your situation in particular.

Thank you. My count has been 45 and below since August 2015 and dropped to 25 just post Christmas and when I was diagnosed. After being on prednisolone for 2 days it jumped to 48 and then after another 3 days it jumped to 133! I have no underlying conditions that they have found because every test that they have done has come back negative. I am not on any other medications except I have always used TCM and herbs for endometriosis and fybroids. I'm hoping that gluten is not a major factor for me.....I really do love my bread too much!!!

and sorry if I got this under the wrong topic. I just noticed it said "Parents of children with ITP" Don't know how I did that.

Somehow when I moved it, I lost your initial post, JMB. Sorry, that's never happened before.

Aoi said everything that I would have said. Any change in diet that is a healthy change is good, even if it doesn't help the ITP. Some people believe in the gluten theory and some do not. I do, and I also believe that a gluten sensitivity could affect overall health and trigger autoimmune disorders. I went gluten free for 3 months and did feel much better, but I fell off the wagon. It is a hard diet to stick to! I intend to get back on it.

More likely to be the Prednisolone. It's a horrid drug but unfortunately is first line management. I felt dreadful on it until tapered to a low dose.

Okay, I think I finally fixed this thread.

Yes Mrsb04, horrid drug but a necessary evil it seems. I've been on it for 2 weeks and am experiencing many side effects and they seem to be different each day! I'm hoping my body will adjust and things will improve over the next few weeks.

Sorry to say that the side effects generally increase and accumulate. They also get worse again when you taper. I just wanted you to be prepared because none of it is an easy ride.

Don't think i wanted to know that

Yes you do Sandi is quite correct. Tapering is very hard work but necessary

Yes you're right. Yesterday was not a great day. Today will be better