Diet and ITP

[RobertSp]

I seem to experience long term remission as a result of diet effects. I was in a position to get my platelets tested weekly. So I took advantage of that and kept track of changes in diet which correlated with platelet counts, I seem to have discovered some consistent effects. I and my hematologist are curious if these effects are seen in only some people with ITP. There may be different forms of ITP. Questions: Has anyone else seen similar effects? Has anyone tried to keep some track of diet vs platelet counts?

[22-patience]

Why don't you share some of your findings re diet with us. I'm curious. I'm always attempting to do that but just when I think I've come up with something positive everything bombs again. Unpredictable ups and downs with platelet count. Unable to stabilize in eight years. I do eat a lot of kale and green vegetables take healthy supplements, ample exercise and rest, etc. Sometimes I think the better care i take of myself the more my ITP resents it. My immune system and platelet count do not like "wellness" ---- sounds crazy, doesn't it! So I have already decided that my New Years Resolution is to "try" to stop focusing on being healthy and try focusing on enjoying myself more because I don't think it makes one bit of difference one way or the other! Happy Holidays!

[RobertSp in reply to 22-patience]

I felt the same frustration for several years when I first started this investigation. And yes some things that make other people healthy make ITP worse. Before I mention any of the foods that have helped me let me say, each person is different. What helps one person may not help another. My hematologist and I think there may be several diseases or conditions that that mascaraed as ITP. One of the things that we noticed was that each of several food makes a small change in platelet counts and doubling the food does not give further increase in the counts. That said I will mention some of the helpful and unhelpful foods. You can try them and see if they make any small difference for you. Good foods: a good quality salmon oil supplement, Walnuts, almonds and cashews. Again, only the usual dose suggested on the salmon oil bottle. Only 3 or four walnuts per day. etc. Pigging out does not help. Good quality, organically grown nuts seems to be best. Roasted nuts seem to give a much smaller effect. I can get nuts that have been refrigerated or vacuum sealed to keep out oxygen. I think the best Idea is to add these to your daily diet for about a month and see what your platelet counts are, then stop them and see if the counts drop. And stay away from anything that has flax seed in it. I would be interested to hear from you if this works at all.

[bloggerkhushi in reply to RobertSp]

Wonderful!! I was looking for these kind of discussion as I m really confused about my diet but somehow feel only diet and stress free can really help me.. Sick of frequent relapse... Wanted some remission now.. Nuts I m already having but not noticed any remarkable effect but will surely continue with it. Salmon oil, not tried yet. Never knew flax seeds can cause inflammation. Plz share more abt this diet thing. Thanks!!

[RobertSp in reply to bloggerkhushi]

I found that the effect of each food is small. Maybe 5 to 10 for each food. But the effects are additive. So the effect of 3 good foods can be 15 to 30. and keeping above 30 is a lot better than crashing to 5. Above 30 my Hematologist does not do a Gama globulin treatment. I think the important thing is balance. Regular meals remove some stress on the body. By that I mean eat at the same time every day. I have tried several supplements like plant sterols ( pine nuts) which have several claims about Immuno modulation. Did not work for me and is expensive. But i might work for someone else. Large dose vitamin C had a minor effect but can easily cause Kidney stones so I do not suggest that one. Curiously enough potatoes and various vegetables may have positive effects. I suggest keeping a notebook. Write down all the things you eat and then review it after a weekly platelet count. It is easier to spot a positive food if you are not eating a constantly changing variety of foods. But variety is good from the point of view of balance so getting back to variety in the future is valuable.

[bloggerkhushi in reply to RobertSp]

Thanks a lot. Feeling motivated again.. Just wish and hope this time I get some remission to try some good diet changes.. On heavy steroids and other medications its just not possible to find the effect. Isn't it?

[RobertSp in reply to bloggerkhushi]

Sorry to hear about the steroids. Prednisone? I've been there. When I went back to the doctor, he showed me the book that describes the side effects, says you may experience some of these. Upon reading them we discovered that I was experiencing all of them. It is a difficult time. You are right that this is not a time to be fiddling with diet. Hopefully the steroid treatment will work. They would not be trying it if it hasn't worked for lots of people in the past. Hang in there.

[bloggerkhushi in reply to RobertSp]

Since 3 yrs I m on it... But off and on.. Yeah side effects r killing..and permanent. But since may 2015 3 relapses in a queue is .. Docs insisting of rituxuamb.. But again looking to long termside effects I m bit apprehesive.. I started hypo thyroid, then itp and now hv SLE/lupus too. I don't want add on more so..

[RobertSp in reply to bloggerkhushi]

In my experience the side effects of prednisone do eventually disappear once you can quit taking it. For me it took about 2 years after stopping prednisone to feel really normal again.

[Jessi0421 in reply to 22-patience]

You just described my own life living with chronic ITP to a tee!! So sorry to hear you have the same unpredictability, but it's nice to know I'm not alone!

[RobertSp in reply to Jessi0421]

I find it somewhat frustrating that so many things are suggested as "good for your immune system." Many of them have a negative effect on ITP. A distinction has to be made between things that stimulate your immune system and are negative for ITP, versus immunomodulators which help to balance the system and so can help with ITP.

[Katewag]

I have had a single figure platelet count for over a year now, this is despite various drugs which only seem to cause horrible side effects. I would be really keen to try anything diet related, so please share any ideas you have! Xxx

[ITP_1992]

I have removed added sugar from my diet! I was already good with this as I make my own sauces (pasta, curry, chinese) from scratch as the amount of sugar in the shop bought one scares me! So whatever I buy from supermarkets now I read & read because there is hidden sugar in anything and everything you can think of...including things that might strike you as being 'healthy'! I've also cut down a lot on sweets (chocolate, cake...) I used to crave these on a daily basis and thus eat them but the following day I notice I'm feeling extra fatigued...so I listened to my body and now when I crave something sweet I'll have some oranges or very dark chocolate. For the past 4 months, every time I have my blood checked my platelets seem to go up each time. I'm lucky enough that I've been in remission for past 3 years and my platelet count is normally around 100K (0 or 3 on relapse). My current count is around 150K and I really do believe it is down to cutting down sugar.

I've also illuminated diary & wheat from my diet for the past 2 weeks, and feel a lot more energised. However did not do it for platelet count, it is purely because I am desperate to feel I have energy rather than fatigued on a daily basis!

Good luck all & wishing everyone a healthy life...hopefully treatment free x

[Morgan in reply to ITP_1992]

Hi like you recently I cut down on sugar on doctor's advice and as well as losing 10lbs my platelets have gone from their usual 30 up to 80. The same thing happened a few years ago when I did the 5.2 diet and lost 2 stone, if only it would stay constant. The resultant energy is great, I have got back to decorating my home.

[bloggerkhushi in reply to Morgan]

Only refined sugar or fruits, figs, raisins, dates all?

[Morgan in reply to bloggerkhushi]

No, most sugar including fructose. Yogurts and fruit juices were the worse, but it is possible to find low sugar ones (that do not contain aspartame). Was advised to limit fruit to 2.

[peruvian]

I'm in remission now. I also think that healthy food and cero stress is the ley. In my case I don't drink milk anymore and actually I'm working on reduce the consume of sugar.... Is someone else doing this kind of diet?

[RobertSp in reply to peruvian]

As I stated earlier: I think there are several diseases mascaraing as ITP. For me milk and sugar gives me a better platelet count. The only thing I can suggest is test yourself. If some change in diet helps then stick with it. If it does not help, forget it and try something else.

[peruvian in reply to RobertSp]

I'm agree with you. I think the results also depends if you have another deseases or not.

I hope more people share their experiences here.

[LannaBarnett]

I'm going to definitely try this. For I too am currently doing weekly count checks. Due to the crazinessof chronic ITP. Starting today iI'll eat healthy and see if myplatelets are affected. Next week iI'll introduce fats. The following week I'll try sugars. I'm curious now. I never thought of my diet changing my count.

[RobertSp]

I would suggest starting a notebook to keep track of what you eat. If a food helps keep it in you r diet and it it doesn't then try something else. I do believe that healthy organically grown foods are a good idea.

[LannaBarnett in reply to RobertSp]

I actually have a garden filled with beautiful vegetation.