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Veganism as cause for ITP? 1 year 7 months ago #68897

  • ImPatient
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Doesn't sound right to me, and my doctors said they don't think so. But there were a few friends and one pharmacist, who told me vegans they knew got severe problems with their blood and they became better as soon as they quit being vegan. I can't find any studies or even any posts about this at all. I've been vegan for about 17 years, and vegetarian longer. Sometimes I did have low vitamin b12 or low ferritin, but then took prescribed supplements and it was fine again. Has anybody else heard such things? I'm suspecting that maybe those people they were talking about quit being vegan while also taking medication or making some other changes that really contributed to their healing.

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Veganism as cause for ITP? 1 year 7 months ago #68900

  • JJ
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Sounds highly unlikely. Sounds like looking for a reason when there isn't one.
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Veganism as cause for ITP? 1 year 7 months ago #68901

  • ImPatient
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Yeah I doubt it, too. I mean, at the moment I live in a not exactly vegan-friendly area, and yet even the doctors say I can stay vegan. If it did turn out to be necessary, I'd consider eating a bit fish or so, but I'd prefer not to. I really wonder how those people came to this conclusion... I also asked them that, but I couldn't get a straight answer except "Malnutrition" (Like what??) and "They were better when they quit". I guess what makes me a bit uncertain is that I don't know many people who have been vegan as long as I have, perhaps that is something I can look up. How are other people doing who've been vegan this long.

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Veganism as cause for ITP? 1 year 7 months ago #68902

  • MelA
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I would want to see specific data on ITP being caused by being a vegan before I'd believe it, reputable data.

I do have a very dear friend who went macrobiotic diet - a fad diet like the others [keto, Atkins, diet for your type etc] - eventually her organs were starting to shut down and she was in serious trouble, luckily she is fine now. What is also interesting is when we were in London years ago a man we met just didn't look healthy, turns out he was on a macrobiotic diet - always wonder how that went with him because he sure didn't look good when we met them.

If one is sensible then I would think one wouldn't have a problem.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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Veganism as cause for ITP? 1 year 7 months ago #68903

  • Carcamoc10
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I don’t personally believe so, but it’s curious that you’ve heard that because when I started showing symptoms, I had been on a vegan diet (for the first time in my life) for a couple of months! I actually thought that was the reason my body was going haywire, but then when I quit and the symptoms didn’t stop I had to go to the doctor to try to find out what was going on. Then was diagnosed almost immediately the next day with ITP. I asked my hematologist if he thought it was my vegan diet from months before and he said no, if anything maybe the diet exacerbated some symptoms but was ultimately not the cause of ITP.
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Veganism as cause for ITP? 1 year 7 months ago #68907

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Thanks MelA, yes reputable data or at least a more detailed explanation, of why somebody thinks it was caused by a specific diet, and why they act so extremely worried. Maybe just because it's foreign to them. What I took from my doctors, and what I believed so far too is that as long as you eat relatively balanced, it doesn't matter. I posted this anyway, because sometimes doctors aren't right either. After some incidents at the beginning of my diagnosis, I'm interested in hearing more opinions and then seeing what makes sense to me.

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Veganism as cause for ITP? 1 year 7 months ago #68908

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Hi Carcamoc- Interesting your doc said it may have exacerbated it. But it sounds like he thinks it didn't have anything to do with it at all. I haven't heard of anybody having problems after being vegan for a short time either. I know that too severe B12 deficiency, for example, can cause irreversible problems, but I would think that takes years to develop and low platelet count is not listed as such a complication. I also think, if one is really deficient the body normally starts craving the foods it needs. At least it was the case for me.
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Veganism as cause for ITP? 1 year 7 months ago #68912

  • mrsb04
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Sounds like a load of rubbish to me
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Veganism as cause for ITP? 1 year 7 months ago #68915

  • ImPatient
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Ok. I find this forum really reassuring. At least it's easier for me to form an opinion after reading what several people write. A lot of you had itp for a while.
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Veganism as cause for ITP? 1 year 7 months ago #68916

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I've been vegetarian, although not Vegan, for years as have my two sisters and my daughter. I'm the only one with ITP. Proves nothing but still...
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Veganism as cause for ITP? 1 year 7 months ago #68932

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Hi JJ, it proves that your sisters and daughter aren't sick. I wasn't sick at least the first 14 years of being vegan either (I'm not sure when exactly my itp started, my counts were slightly low 3 years ago, but not a problem till last year)... I'm gonna read more about it and I won't change anything at the moment. Except maybe buy more organic and fresh food again.

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Veganism as cause for ITP? 1 year 6 months ago #69098

  • Hal9000
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... Sometimes I did have low vitamin b12 or low ferritin, but then took prescribed supplements and it was fine again...

ImPatient, let me see if I understand.
Because you are Vegan the doctor ran a bunch of tests looking for things that could be low because of a vegan diet, yes? If so, did the doctor just test a few things typical of that diet, or, a bunch of things? How about vitamin D? Folate? Is there a known list of potential deficiencies?

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Veganism as cause for ITP? 1 year 6 months ago #69107

  • mrsb04
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Folate is usually higher in vegans. It would be sensible to check vitamin D levels though

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Veganism as cause for ITP? 1 year 6 months ago #69108

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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Folate is usually higher in vegans. It would be sensible to check vitamin D levels though.
ImPatient have you tried Marmite it is a good source of B12?

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Veganism as cause for ITP? 1 year 6 months ago #69110

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Marmite! I had it a lot when I lived in England, I was gonna say it's an English thing, but I just read a German invented it- and we actually have it in our small town grocery store. Funny I never saw it here. Yes I can try that and I sometimes take Ankermann B12, they're 1000 micrograms per pill. At the moment my b12 is fine, but it wasn't that great the last years. Everything nutrition related that has been tested was fine, except my ferritin was a bit on the low side. It wasn't the doctor's idea that food may have an influence on itp, it was random friends and two pharmacists.

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Veganism as cause for ITP? 1 year 6 months ago #69111

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Hi Hal, let me check, I thought they tested all of that, but definitely b12, folate, iron etc. Perhaps not D... I wouldn't be surprised if it was lower than a few years ago when I lived in California. I'll have my blood tested again in a couple days, I'm also curious to see how my iron pills may have affected my blood count. When I took them, my platelets dropped about 30 every two weeks for a month, then I stopped and they increased by 30. Now I took them two weeks everyday again...
That probably does have an influence, but I'm not convinced about the vegan thing in general, though if it turns out that way, I will make some adjustments.

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Veganism as cause for ITP? 1 year 1 month ago #70113

  • bc2789
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I've wondered about this too. Obviously correlation doesn't mean causation, and I can't think of any reason why veganism could lead to ITP. My personal experience, though, is that I was diagnosed with ITP after being vegan for about 3 years. It happened around the same time that I started being allergic to soy products. I stopped being vegan a couple years after diagnosis, and at the time was on promacta, which was working for me. I've since stopped promacta, and my levels are safe for just watching, but nowhere near normal. No clue if this is linked to eating animal products or not.

Anyway - interesting question, just wanted to add my experience!

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Veganism as cause for ITP? 1 year 1 month ago #70146

  • ImPatient
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Hi BC-
Some deficiencies that are more likely for vegans play a role in ITP, but my doctors are still convinced it's not the cause for my itp. My hematologists and gps that is. Also little update: My vitamin d was too low, I got it tested. I wonder if regular over the counter pills are enough? I got Viridian's now. I know for my ferritin it's not enough I got higher dose iron pills prescribed.
Pharmacists said it may get better with a non vegan diet, and my hemostaseologist too.

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Veganism as cause for ITP? 1 year 1 month ago #70147

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I'm taking Promacta too, that's why I actually started eating fish- I had terrible joint pain and cracking, and somehow eating fish made it much better. At the moment I'm trying to lower my dose cuz I've been somewhat stable over 150. Next blood count tomorrow with half dose (I only needed 25mg a day, so now every 2)

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Veganism as cause for ITP? 1 year 1 month ago #70148

  • mrsb04
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Vitamin D2 is found in plants so hardly going to be short of that if you are a vegan. If you are going to take a supplement make sure it is D3, especially as winter is nearly here.
There is a lot of research regarding autoimmune diseases reducing Vitamin D levels.
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