Food and ITP

Hi,

This is only my second post. I have had more blood tests and see my specialist again on August 5th. I read earlier a query about whether food of any kind could lower platelets. I read an interesting article which linked walnuts and lowering of platelet numbers. I appreciate that this is probably a very rare case, but as some people are very sensitive to nuts, it made sense to me. Sandi, I believe you are very sceptical about the link between food and ITP, but please forgive me if I have got this wrong.

I am a great believer in getting nutrition right, so would be very interested to hear anyone's views on the possible effects of certain foods, either in raising or lowering platelets?

Thanks in advance!

I'm not necessarily skeptical about food and ITP, but it depends on the statement. I believe that eliminating some foods in individuals susceptible to food sensitivities can possibly benefit ITP. That could be different for everyone and is not easy to figure out. If someone is sensitive or allergic to nuts, they probably wouldn't be eating them anyway, so where'd the ITP come from? Eliminating foods after the diagnosis could cause ITP to improve.

Usually when foods are listed that 'affect' platelets directly, those foods do not lower counts but can affect platelet aggregation (stickiness). In other words, eating certain foods would not really cause counts to drop (not overnight, at least). That's what I believe, doesn't mean it's right.

I have a hard time with 'getting nutrition right' because everyone believes different things. Some people eliminate dairy, some eliminate meat, some eliminate sugar, some eliminate gluten, some eliminate fruit, some eliminate carbs.....which is right? Erica found that eliminating fructose helped her ITP. I found that eliminating nightshades and gluten helped Lupus inflammation. 'Getting it right' means getting it right for you and that wouldn't necessarily help anyone else.

That's my view!

from my personal experience, I must admit I saw a HUGE difference when I was eating healthy and when I wasn't. In my first year of being diagnosed, I noticed that everytime I ate mcdonalds (which i wouldn't even step into anymore), I would get petechiae, as ridiculous as that sounds. I can't however tell you that you can put yourself in remission from eating healthy.

To expand on what Sandi said, I found that getting at the food cause of my chronic diarrhea let my intestines get un-inflamed and seemed to alleviate the immune reactions I was having. It turned out my diarrhea was caused by fructose malabsorption and the foods I eliminated included many fruits, onions, and certain artificial sweeteners. It's called the FODMAP diet.

My routine colonoscopy showed evidence of healed scarring according to the gastro.
Erica

Thanks everyone for your answers. Interestingly, prior to discovering that I had low platelets, I had started on a gluten free diet due to bloating etc. I am familiar with Fodmop, and what you say Erica makes perfect sense.

Sandi, I agree completely about nutrition being a very individual roadmap, what suits/ upsets one person maybe the very thing that helps another person. Obviously you wouldn't be eating nuts if you knew they were bad for you, some people may not have enough of a bad reaction to be able to pinpoint a possible cause.

Surely worth trying to eliminate/ add foods that might help in the first instance,especially if like me your counts aren't too low compared to some folks?

jomurphy wrote: Interestingly, prior to discovering that I had low platelets, I had started on a gluten free diet due to bloating etc.

So it may have been the lack of gluten that caused the ITP!

It's really difficult to try to find a cause for ITP, either by ingestion or environment, because the counts go up and down anyway. And remissions happen anyway. 'False cause' is a favourite logical fallacy in health circles. That is not to say that foods couldn't be the cause of ITP but we have to be aware of jumping to fallacious conclusions.

A study has been carried out in the UK regarding food intolerances and ITP. So far, I believe that no connection has been established.

Hi Ann,

Well if it was lack of gluten, I will take the ITP over the discomfort any day! My life has been transformed by going gluten free! Although newish, I am not naive enough to suggest ( for example) cut out pineapple/ red meat or anything else equals miraculous cure for ITP. I was merely asking if anyone ( and yes, guess what, we are all different!) had any experience of foods which had an effect, positively or negatively, on platelet counts. The example earlier about the Macdonalds is exactly the type of thing I had in mind!

If there was a quick fix, nutritionally speaking, it may have been discovered by now, so I am exploring ways of managing and improving and not exacerbating the condition, which I appreciate ( again) is different for different people, but interesting to a novice!

Ann wrote: It's really difficult to try to find a cause for ITP, either by ingestion or environment, because the counts go up and down anyway. And remissions happen anyway. 'False cause' is a favourite logical fallacy in health circles. That is not to say that foods couldn't be the cause of ITP but we have to be aware of jumping to fallacious conclusions.

Exactly. Counts go up and down anyway. Our skepticism comes from many years of observing and listening to many claims, from drinking Glyconutrients to drinking your own urine. I think I've heard just about everything. I've tried some of them myself (not the urine). It always makes me nuts when someone says that they started eating wheatgrass and counts went up (but oh, by the way, I'm taking Prednisone too, so it could have been that). Not a substantial claim.

Years ago, someone decided that drinking pineapple juice helped to raise their platelets so many of us jumped on board and started buying pineapple juice. Didn't do much for counts, but I'm sure there were other benefits.

And yes, I would agree that it certainly does not hurt to try to eliminate certain foods. At the very least, one could get the benefit of feeling better (not to be confused with curing ITP). The problem is that it can take a long time to see results from eliminating something, and in the meantime, people are treating and counts are doing their own up and down thing. Hard to prove a correlation in that instance.

In my case I don't think of it as foods causing ITP. I think of it as foods causing diarrhea, and chronic diarrhea causing my immune system to react.

I think IF you have "IBS" type gut problems, then getting that resolved could let your immune system calm down and quit eating platelets.
Erica

If I stopped eating everything that agitated my IBS I would be eating plain rice or rice noodles! Can't live on that!

I went to a "wrap party" last night. The women running stated she was diagnosed with MS and Lupus and after taking these supplements they were selling she feels great and is off of all her medications from the doctor.

Now I looked at the ingredients and found items that cause allergic reactions to me! So you do not know!

So I say if it helps you feel better than do it! If it doesn't help than no harm done!

Which supplements were they? Do you remember?

Sandi she used something called Relief and 2 others I do not remember. Not sure if I'm allowed to share the link but here it is to the page of supplements! You click on the item to read the ingredients


healthierfirmeryou.myitworks.com/shop/#287

That information takes me back to the start as glucosamine ( which Relief appears to be) is one supplement I have read that can lower platelets! I see where you are all coming from now! I definitely have had stomach/ constipation issues which are resolving after going gluten free. Let's hope that this in turn might help with ITP. I think it's important to travel in hope and tolerate and accommodate a wide range of views and ideas.

Interesting food for thought (and everyone's food and thoughts can be different but valid !! )

I will let you know how my first proper appointment goes now that my blood tests have been re done.