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Diet 6 years 4 months ago #55891

  • KeanOTR2016
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Hello all, you guys have been a godsend for me; thank you for being patient and so open and willing to share your stories. I am atempting to go alcohol, sugar, dairy, and caffeine free, as well as no processed foods (didn't really eat many before anyway) and eating lots of greens and other things that I have read are helpful- pomegranate, beets, pumpkin, and sesame/sesame oil. Anybody have any thoughts? Or am I doing it all for nothing. Thanks guys.

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Diet 6 years 4 months ago #55892

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I absolutely do not believe you'd be doing it for nothing. There is always a huge benefit to healthy eating, even if it doesn't cause your counts to go up. It could help in so many other ways. I eat as much organic and gluten free as possible. I've been working on giving up sugar for a while and am having a hard time. I don't eat sweets, but I do like creamer in my decaf.

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Diet 6 years 3 months ago #55901

  • Melinda
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Eating healthier is to your advantage. However I'd go slow because if you start denying yourself every little thing that you had liked before then you are going to crave it and probably eat more of it.

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Diet 6 years 3 months ago #55904

  • Hal9000
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I have to think that everyone is a little different in regards to diet. So your millage may be different :)
Believe me, I have been experimenting for effects of diet. The best I can tell, diet is not an influence to my counts. But, judging by other measures (eg itch/dermatitis level) sugar might have an effect. How it could, I don't know. Metabolism influence? Inflammation in the body?

What I would suggest though is what others have mentioned many times on this forum, and that is 'stress'. For example, how about a 'power nap' during the day to reduce daily stress hormones? A quick nap less than 20 minutes after lunch?

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Diet 6 years 3 months ago #55914

  • Minnow
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A vegan diet has been mentioned in this forum from time to time. I decided to try it after finding someone on the internet who said she'd resolved her ITP by going on a 100% plant-based diet. The word 'vegan' seems to make people who've never tried it roll their eyes, and I must admit I would never have thought of it had I not found this information.

When first diagnosed in 2012 my platelet count was 4,000 and I was put on a high dose of prednisone. Long story short, it was an awful roller coaster and the side-effects were terrible. In desperation after far too long on the meds I was told a splenectomy was my only hope. I regret that I let the doctors persuade me. Platelets were up for the first few days but then went down to 9,000 again. So I had no spleen and chronically low platelets again. A miserable failure.

We're all told there is no known cause and no known cure for ITP. Once I got out of the debilitating prednisone fog I was in I realised there was a sequence of events that had occurred leading up to my diagnosis. I'd taken a long course of ibuprofen (Advil in the US I think) which I didn't know until later, is known to damage the lining of the gut. It did mine; I had a bleed the last time I took it.

So I had Leaky Bowel Syndrome,which caused a major stress overload on my immune system, the reason, I believe, that it got confused and began destroying my platelets. All this took a long time to figure out, but once I did, I knew I had to mend my gut before anything else good would happen. According to the website of Dr John McDougall, (who recommends a vegan diet for autoimmune disease sufferers) the immune system regards animal protein as foreign protein and sends out the attack squad, thus giving it more work to do.

So I needed to calm down my immune system; give it a holiday from all that warfare. I started cutting out dairy to start with, just to ease into it. I felt so much better in the first week; I was amazed. I did accidentally eat something with milk protein in it one day and my platelets took a dive. Coincidence maybe, but another poster on this forum (Alfonso) has said the same happened to him three times after he ate sausages after not having them for 18 years and he got his ITP back.

I had no idea if this vegan diet would work for me but after eight months of strictly avoiding animal protein I had a result. After a lot of ups and downs my platelets went from 7,300 to just over 400,000 and they have stayed there ever since. Normal! It has been two years now and my immune system is stronger than it's ever been. Despite having no spleen I haven't had any illnesses although the doctors said I would be susceptible to everything that was going around. I am aged 61 and in great health. My arthritis has even gone, so this is good for more than just one autoimmune disease, as Dr McDougall advocates.

They say that 75-80% of the immune system is in the gut so it makes sense to feed it right. But of course every gut is different and what might work for one person may not for another. Having said that, I felt I had nothing to lose and everything to gain by trying the vegan diet. It worked for me and I feel so much better on it. And my platelets have returned to normal which the doctors said would never happen. I don't want to upset my immune system again, and especially not my platelets so I'm sticking to it.

Two things though. You do have to be very determined and disciplined. Falling off the wagon might send your immune system back to its old ways as it did with Alfonso and his sausages. Also it doesn't happen quickly. Your immune system needs time to relearn.

I hope this helps someone, as it has literally transformed my life.

All the best. :)

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Diet 6 years 3 months ago #56114

  • Nomad
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Minnow...I've noticed that going gluten free seems to help me a little. I know you said you are vegan and doing well since becoming vegan. Are you also gluten free?

Kean....I think going gluten free has been helpful. I also strongly believe for me, eating lots of greens...including a green juice I sometimes make at home and sometimes get at Whole Foods has been helpful. The juice has spinach, kale, apple and pineapple. Other things I think might be helpful for me include: avoiding "fake" sugars, junk food in general and avoiding dairy.

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Diet 6 years 3 months ago #56257

  • Minnow
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Nomad, I am also gluten-free, although not because I am gluten intolerant. Hard to tell if this has made a difference or not.

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Diet 6 years 1 week ago #57948

  • Owensmom
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  • My son was diagnosed with ITP in 2013 at the age of 6. He's had win-rho, ivig, rituximab, steroids, promacta, and 6-MP. We are currently on a plant-based diet which we started September 2016. We're trying to avoid a spleenectomy.
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Thank you for your post, Minnow. My son was diagnosed three years ago with itp. We've tried everything but a spleenectomy. We began our plant-based journey four months ago. This is our last effort before giving in to the spleenectomy. We plan on giving the diet a year. So far we feel amazing, but we haven't seen much progress with our son's condition. We saw a slight improvement this past month. You have given me hope and reminded me to be patient. So thank you.

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Diet 6 years 1 week ago #57949

  • jayinchicago
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Sorry to be blunt, you are doing this for nothing when it comes to platlets.

As sandi correctly said being healthy is always good.

I have always thought my itp is because of alcohol, it has been 4.5 months of no alcohol and only thing which keeps my count up is nplate.
As I was told here once the platlets get identified as a foreign object it gets registered in the bodies memory. No matter what, the platlets get attacked irrespective of your change.
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Diet 6 years 1 week ago #57952

  • Sandi
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Regardless, Owensmom, keep up the good work! Feeling better is a huge plus and you never know what could result from healthy eating. Remissions are always possible.
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Diet 6 years 6 days ago #57964

  • Owensmom
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  • My son was diagnosed with ITP in 2013 at the age of 6. He's had win-rho, ivig, rituximab, steroids, promacta, and 6-MP. We are currently on a plant-based diet which we started September 2016. We're trying to avoid a spleenectomy.
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Jayinchicago,
I appreciate your input, but I will bet against you. I am daring to consider the impossible. I have spoken with dozens of hematologists and you're right, they all say diet has no effect. But... we have joined a clinical study that compares the plant-based diet to heart disease. So far I have learned that it does cure the incurable! It can cure type 2 diabetes, reverse heart disease, rheumatoid arthritis, and possibly even cancer. I'm giving it a try and daring to hope. I will let you know how it goes. I hope it works and I hope it will help others, too. If you're curious, watch fork over knives: the documentary. I know it's helped people with lupus, too.

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Diet 6 years 6 days ago #57965

  • Sandi
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I get the concept that food does not directly raise platelets. Not like steroids theoretically do. But I do believe that autoimmunity can be reversed if the right combination of 'anti-triggers' are found. Okay, I made that word up for lack of a better one.
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Diet 6 years 5 days ago #57969

  • mrsb04
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"Anti-triggers' works for me. I changed my diet after watching the Betrayal series of videos. My haematologist was quite accepting of me trying it. No result re platelet count as yet but then I may not have been on it long enough to restore my gut micro biome back to where it should be. I am feeling better in myself though.

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Diet 6 years 5 days ago #57970

  • jayinchicago
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Hello Owensmom,

I wish you the best and hope it gets working for you.

You will laugh at me if you know what I have tried.
Probiotice, butyraid, vitamin a, dha, vitamin d, b12 every supplement under the sun.
Changed diet, stopped working out, stopped running and started running.

this thing has driven me nuts, now Iam at a state of nirvana because I dont give a ___ anymore.

Just go every 3 weeks get a nplate shot and move on. Back to what I was doing before I got this darned thing in 09/2016.

Only thing I have done differently cut out alcohol significantly.

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Diet 6 years 5 days ago #57972

  • Sandi
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Jay - I wouldn't laugh. At least what you did makes sense. When I was diagnosed, I went to a local health food store. They asked me to put my arms out and based on that, they told me that Liquid Chlorophyll would help me. I bought it and choked it down every day....didn't do a thing. You do anything to try to fix it at first.

I used to think that there wasn't anything that could be done as far as diet. I've changed my mind about that since watching Fat, Sick and Nearly Dead (documentary). It doesn't hurt to try.

I am glad to see that your outlook has changed. It seems as though you've accepted it to a large degree....do what you have to do and move on with life. Don't stop researching and trying new things though. You never know.....

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Diet 6 years 4 days ago #57974

  • Owensmom
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  • My son was diagnosed with ITP in 2013 at the age of 6. He's had win-rho, ivig, rituximab, steroids, promacta, and 6-MP. We are currently on a plant-based diet which we started September 2016. We're trying to avoid a spleenectomy.
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Jay,
I would not dare laugh at you. I have been trying to "cure" my son's itp for three years. His is very responsive to ivig, but drops dramatically at the end of each cycle. We've been at 0 twice and in the single digits more times than I can count. I've taken my son to every kind of specialist I can think of to make sure there's no underlying cause. I've spent countless (and I mean LOTS) hours doing research, I've sworn it off, and started up again. I have no choice, but to keep caring. I feel your pain. It's not fair. It sucks. But hold your head up. You can manage this and still enjoy life. Don't lose hope.

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Diet 6 years 4 days ago #57977

  • tj1989
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I read this story from a bone marrow failure forum. She had Aplastic Anemia, a different type of autoimmune disease, and now healthy by strict diet change.
goatrevolution.com/marlakins/
I also read from that forum that someone has remission by using macrobiotics diet.
Diet might not cure everyone, but try and adjust your diet according to your condition can at least improve the overall health. Good luck.

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Diet 6 years 4 days ago #57984

  • Hal9000
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Ha Sandi. I knew exactly what you meant by 'anti-triggers'. You could have even said 'anti-triggers-cascade' I would have known exactly what you meant, LOL

Anne. About probiotics. I just ordered 'Nature's Bounty Ultra Probiotic 10'. It, and some similar others that I currently take, have a different ingredient list than others. Are you taking probiotics capsules?

Jay, FYI. I didn't figure out I had a Gluten problem until eliminating it for about a week. That is to say, some influences have longer reaction times.

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Diet 6 years 3 days ago #57991

  • mrsb04
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Hal
I'm not taking tablets at present am drinking Kefir, eating Total yoghurt and eating mainly plant based foods. Interestingly on Wednesday this week we had a tv programme looking at pro biotic drinks, kefir and pre biotic foods which proved Kefir was the best

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Diet 6 years 3 days ago #57992

  • wquine
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It seems like the AIP (AutoImmune Protocol) diet works with other autoimmune "diseases". I decided to try it for ITP because when taking the prednisone my leaky gut also improved even though prednisone is known to make digestive issues worse! This was a clue that I was truly experiencing an autoimmune disorder.

I have not been perfect by any means but my counts have gone up (now over 100!!) and hopefully will continue to rise. I did not want to post anything because I was unsure it was working. I'm doing videos to hold myself accountable and hopefully help others.

www.youtube.com/watch?v=47ELrkZfJyE
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Diet 6 years 3 days ago #57995

  • wquine
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that first video I was depressed and anxious but you see in later ones I'm getting better, plus it has my cat Xeno in them! The real star.

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Diet 6 years 2 days ago #58000

  • Hal9000
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Anne, have heard of Kefir but don't know anything about it. Is that something one can buy at the store, or do you make it yourself? A quick search on 'total yogurt' looks like that is a name brand. Yes?

Ahh, wquine is a video star. Saw your series. 100 count, WOW. Obviously you're on the right track. From the beginning, I've suspected it was the Benzene exposure. Perhaps you are allergic to it and don't realize it. It was disappointing that Dex couldn't shock your immune system into a normal state. Do you suppose there is a food you are allergic to - confounding the ITP?

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Diet 6 years 2 days ago #58002

  • mrsb04
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Hal,

usa.fage/yogurts/fage-total-plain#fage-total-0

Kefir can be bought ready in a drink or as a culture medium to make your own in either milk, milk substitutes or water. I have looked into making my own but looks quite expensive compared to what I pay for something that is instant. I use this at the moment krasnystaw.eu/?page_id=725&lang=en because It's available in a local Polish Deli for 61 cents a bottle (if the BBC currency converter is up to date) is nice to drink. We've had a new Polish deli open up in town so I will pop in there to see what they have available.

I know I should really try cutting out dairy but I also have osteoporosis so have to have a high calcium intake to protect my bones which to me is as important as caring for my ITP.
Anne
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Diet 6 years 4 hours ago #58024

  • wquine
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Anne, have heard of Kefir but don't know anything about it. Is that something one can buy at the store, or do you make it yourself? A quick search on 'total yogurt' looks like that is a name brand. Yes?

Ahh, wquine is a video star. Saw your series. 100 count, WOW. Obviously you're on the right track. From the beginning, I've suspected it was the Benzene exposure. Perhaps you are allergic to it and don't realize it. It was disappointing that Dex couldn't shock your immune system into a normal state. Do you suppose there is a food you are allergic to - confounding the ITP?


Hi Hal, hope your counts are on the rise! Before the diet I knew I had issues with diary and gluten. But I may have uncovered sensitivities to tomatoes. Again this is all in the dark, who knows if its staying away from the chemicals, the diet or who knows but I'd like to be able to contribute in some small way to a solution for this largely unknown condition.

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Diet 6 years 4 hours ago #58026

  • Sandi
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Hey, I watched two of your videos. Nice to see you!
Two comments:
1. You must be a very happy guy today (from the looks of your shirt in Video #3) :woohoo:
2. I really think you need a dog instead. ;)

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Diet 5 years 11 months ago #58033

  • Owensmom
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  • My son was diagnosed with ITP in 2013 at the age of 6. He's had win-rho, ivig, rituximab, steroids, promacta, and 6-MP. We are currently on a plant-based diet which we started September 2016. We're trying to avoid a spleenectomy.
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We saw progress this week! This is week 2 after ivig treatment. Platelets are at 163. Usually they drop below 70 by now. We actually made it in the normal range for more than a week!! I am thanking our diet for the success. If I had to pinpoint one part of our previously unhealthy diet, I would say it has a lot to do with processed sugar. But maybe it's a combination. We do not eat meat, dairy, eggs, or oil. And VERY little salt and sugar. Most of the sugar we eat is in the form of honey or natural maple syrup. Our dietician explained that your body can't recognize refined sugars as food. It thinks it's a foreign substance and begins to wage war. This causes inflammation and can trigger an autoimmune response. It's a tough way to live at first because America puts sugar in EVERYTHING! Seriously, read all the labels of the foods you eat and try to find something that doesn't have any sugar added, including artificial sweeteners.

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Diet 5 years 11 months ago #58041

  • wquine
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Hey, I watched two of your videos. Nice to see you!
Two comments:
1. You must be a very happy guy today (from the looks of your shirt in Video #3) :woohoo:
2. I really think you need a dog instead. ;)


Hi Sandi
1. Yes that was an amazing superbowl!
2. Xeno is basically a dog, he's always at my side, comes when I call him and can do tricks. Though if we had a bigger place I'd get a Golden Retreiver.

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Diet 5 years 11 months ago #58042

  • wquine
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I definitely think Owen's counts are at least partially up because of the diet he's on. Besides sugars I think you're onto something by mentioning oils too. Though I'm trying to avoid processed foods altogether, when I do I'm studying the labels for which oils.

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Diet 5 years 11 months ago #58044

  • tj1989
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Hi wquine,
How long did you (or do you plan to) stick with the AIP diet? I searched online, most of them suggested do that for a period of time, for example 1 month or half year, not forever.

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Diet 5 years 11 months ago #58047

  • Owensmom
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  • My son was diagnosed with ITP in 2013 at the age of 6. He's had win-rho, ivig, rituximab, steroids, promacta, and 6-MP. We are currently on a plant-based diet which we started September 2016. We're trying to avoid a spleenectomy.
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It is 100% this diet! We have been desperately battling this for over three years now. We've been through hell and back, just like many of you have. We've never had a response like this, ever! I wish you could hear the emotional in my voice. This morning when I got the results I cried. I know we're not in the clear yet, but I finally, for the first time in a long time, have some hope. So far, each month we're seeing improvement. This consistent improvement is also something new to us. My son's platelets love to be in the single digits, until recently.

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