TOPIC:

I see a doctor off and on who is a neurologist, studying to be a Functional Doctor.
He told me that he thinks much of my aches and pains (I have other AI issues) would improve as well as my platelet count would increase if I did the Autoimmune Paleo Diet.

I have experimented with going gluten free and when I'm strict, I do get a little bump in count.

Various natural things do seem to cause little increases: juicing greens, papaya leaf extract capsules, gluten free, avoiding junk food.

The AIP is very strict: no gluten, no dairy, no nuts, no eggs, no beans/legumes, no sugar, no fake sugar, no seeds, no nuts, no junk food, no alcohol, no nightshades, no coffee and I think either no or reduced rice/potato.

Anyway, I think I'm going to do strict: no gluten, no dairy, no sugar, and no nightshades and reduced everything else to see if I get improvement.

Has anyone ever tried Paleo or AIP to see if their platelets increased?

This is an interesting topic- thanks for sharing! Probably no one commented because no one has done the AI Paleo. I have not done Paleo but have read about it. Let us know how it goes for you!

I have been off sugar for over a year- that has helped in so many ways! I was overweight and then gained 30 more pounds during the 4 years that I was off and on prednisone. I went off pred in 2014 and onto Nplate, but still was hard to lose weight until I got off sugar and onto more vegetables. I do believe what I read about extra fat creating problems such as inflammation, hormone imbalance etc.

Eliminating sugar didn't affect my platelet counts but I feel overall better emotionally, mentally and physically. I have more energy and enthusiasm for life. Great not having the food cravings that I had on sugar- it gives me a sense of freedom.

I have heard of people with auto-immune that had good results with standard Paleo diet. I guess it would be the eliminating grains that helped them, not sure if these particular people were off dairy.

I don't care that much for poultry or beef so Paleo doesn't appeal to me. I'm leaning more towards the vegetarian/vegan route. I like some of the things I read about people having success with rheumatoid arthritis after adopting a no-dairy, no-wheat diet. I have problems with inflammation- painful hands, joints. It comes on like rheumatoid arthritis in a flare, though I test negative for RA factor, so not sure. My C-reactive protein count was high last year- I believe it is an inflammation marker. Anyway, I'm researching all I can. I've had ITP for 6-8 years, counts are stable 30-50K with Nplate.

Yes Sandi I hear you about coffee creamer(another thread) I am trying to get off dairy but love my coffee latte. I've tried soy milk but its too sweet. Bought some unsweetened coconut milk, will give it a try. I'm not giving up coffee- it actually helps me so much with the occasional morning headaches I get from Nplate. They go away instantly with a bit of coffee. good luck everyone with the diet!

Poseymint, I had arthritis symptoms and ITP but after going on a vegan diet I now no longer have either.
Details in my post here:

www.pdsa.org/forum-sp-534/6-general-itp-discussion/29372-diet.html


I know of someone who is on the Paleo diet but their ITP symptoms haven't improved. Maybe because the Paleo diet includes animal protein which the immune system regards as foreign protein, therefore it sends out the attack squad. Just as suppressing the immune system with steroids doesn't fix the problem, only manages it, riling up the immune system with foreign 'enemies' isn't going to calm it down and give it time to recognise the things it shouldn't be attacking, ie, platelets and other normal tissue etc. Inflammation is a problem and a 100% plant diet seems to help with this. It's well worth a try as you will see from my other post.

Salicylate intolerance can also cause achy and swollen joints which aren't an immune response. Salicylates are a natural food chemical in most foods and probably more people react to them unknowingly, unaware of what's causing it. I found I am salicylate intolerant by doing an elimination diet developed by a hospital in Australia.(Foods which cause reactions can be found here: www.fedup.com.au) Symptoms are so varied you'd never think in a million years they had a common cause. I'd had many of them all my life and they went away in a week. Nothing short of a miracle I thought at the time. Doctors don't have a lot of knowledge about it; mine thought I was gluten intolerant but tests showed I wasn't. Anyway, just a thought.... :)

Hi--

I've had ITP for about three years. I started the AIP diet in August when my count was at 74K. It had been declining steadily over the past two years. As you've outlined, AIP is a tough regimen with lots of restrictions but I found the following online (and free!) resources VERY helpful:

grazedandenthused.com
thepaleomom.com
autoimmune-paleo.com

I planned out meals for each week (the cookbook The Healing Kitchen by Alaena Haber has great meal plans). I added homemade bone broth to my diet and a probiotic. I also added a daily home yoga practice (Yoga with Adriene on YouTube is wonderful and free). And I did a few rounds of ozone therapy.

After 3 months, my platelet count had gone from 74K to 165K (NORMAL!). It wasn't a controlled experiment since I have thrown everything at this (yoga, diet, ozone) for the last three months. However, all of these activities are sustainable and I enjoy them. Further, I love the way that I feel now and the diet plays a big part in that. So I'm keeping up the AIP diet even though I've been cleared to start adding back foods like nightshades and legumes. I have no plans to ever return to gluten after this experience.

If you decide to do AIP, I wish you all the best. Set yourself up for success--meal plan, avoid eating out for the first 30 days, and let your family know how they can support you on this journey.

Good luck!!

This AIP diet is working so far for me and I'm documenting my journey. I have slipped up many times but continue to have hope with counts going up. This has worked for other autoimmune conditions so why not ITP. Well so far so good and I will continue to post videos like this one:
www.youtube.com/watch?v=MrkDgBF7CB0

After researching many diet changes, I also came to the conclusion that Paleo was the best. It deprives of nothing essential. You have to stick with organic though or what you are eating is still crap.

Hello nomad, unfortunatly i havent tryed this, and dont think can advise you on that diet, but as i read a lot and seems to be verry populat the diet you mentioned, so wish somone who tried this will confirm it to you, good luck wish you the best! have you ever been on desmopressin ?

I found the diet too difficult.
In fact, prednisone and extreme stress caused me to overeat and many poor choices.
At the moment, I’m not eating sugar and very rarely will have flour.
BUT, when I say no sugar , I mostly mean no desserts etc. I’ll eat a small amount of ketchup or salad dressing even if there is sugar in it. But, I’m aware. And eat very little of an item that has any sugar in it.
Flour...pretty decent. No pasta. But, on occasion I’ll sneak a small bite of bread.
I should prob. stop that.
I feel confident I have no issues with Nuts or eggs.
However, after close attention, I have stopped dairy. It’s an issue...only exception is Feta cheese. Doesn’t seem to bother me, so I allow a small amount.
I’m eating lots of vegetables.
Some meat, chicken and fish.
I’ve lost five pounds and feel better.
Platelets aren’t doing much.

I've been doing AIP for roughly 5 months now, and have not yet seen a difference in my platelet count, but I've noticed many other improvements: I used to frequently have a lot of mucous in my bowel movements, and that's gone; skin itching is virtually gone (scalp, vulva, anus); frequency and intensity of headaches is way down (except for those triggered by ITP treatments); my skin looks the best it ever has!

I've been keeping a food journal for 7 months, and working with a naturopath to help me analyze it and tweak my diet. I wasn't getting enough protein at first, and she also prescribed L-glutamine to help heal the damage done by my food sensitivities. I've only tried a couple food reintroductions so far, and discovered I'm allergic to eggs. I'm not particularly in a hurry to try more food reintroductions for a while, but my family is eager to have me eating more things because it's difficult eating socially on such a restrictive diet.

The first few months were the most difficult, but I was already in the habit of cooking most things from scratch and adapting to special diets anyway. (I do all the cooking in our household, and "convenience food" means buying pre-washed greens ) I'd already been gluten-free for 5 years for chronic pain and gut issues; caffeine-free for about 9 years (to varying degrees-- spent 2 years of that even avoiding chocolate and decaf) to manage anxiety; and I did a low-FODMAPs diet in solidarity with my spouse for a couple years as an experiment to help with IBS.

It really is a great diet, and my advice to anyone curious about trying it is to go slow-- don't throw yourself into it all at once. You'll know when you're ready to "take the plunge" and do the full elimination diet. Don't worry about "slip-ups"-- we all need comfort food sometimes! (There were more than a few days towards the beginning that I "needed" several large handfuls of dark chocolate-covered almonds after a visit to the hematologist!) This article is what gave me the resolve to try it in the first place:
aiplifestyle.com/why-i-tell-people-not-to-start-aip/
Keeping a food journal is extremely important, and it can help you track your ITP journey, too-- I keep track of all my treatments, moods, thoughts, platelet counts, etc.

I was very happy to see this thread here-- thanks!

Hey everyone.

I missed this blog post my first go around through the web site, but low and behold I threw my hands up and landed on the Paleo diet as well.

Background
Roughly 7 months ago I started getting eczema type symptoms on my stomach primary, and randomly on my legs and tops of my feet. That stopped after about 3 months and then I started seeing extreme bruising from the simplest of things and then the Petechiae began. Off to the doc for the blood test, which resulted in a 12K count, a week later to the Hematologist for another blood test, which resulted in an 8K count and on to 60mg of Prednisone. Counts went as high as 135 on the 60Mg (lovely ride as you are likely all aware), then began dropping as soon as we dialed back the dosages. After about 60 days of the Prednisone, the doc was confident we were dealing with ITP, after we did a couple dosage ramp up/down experiments on the Prednisone. So Platelet count is now back down to 12K and we are scheduling the IVIG for the following week. This is where I threw my hands up, started reading a bunch of stuff on this site and decided to the hell with it. Lets go full blown Hippie or Hipster what ever the proper term is as of the moment, so I pull the Paleo book off the shelf, where it had sat for the better part of three years untouched from the first day I had bought it.

I go semi Hippie and cutting out the grains, beans, and sugars (any kind of treats). I had already cut out Dairy, Coffee, and salted cashews as the gerd was killing me from the steroids, and I found cutting those three items drastically reduced it. I say semi Hippie cause I wasn't going to the health food store for Hormone/antibiotic free meats, free range chickens, or any other tree hugging hippie requirement. Got to ease into this a bit ya know..

So I'm on this Paleo diet for five days before I'm scheduled to start the IVIG and I happen upon the Naturopathic doctor (ND) in town while I'm doing my Hippie search for the local health food store. The day before Im headed for my IVIG I sit down for three hours with this ND doing her witch doctor thing analyzing the neurological effects on my body of different foods and materials (metals, etc). She was doing a Carroll food intolerance test and something else or maybe its all the same test, didn't think to ask at the time. As we go through this testing, she determines I have an H. pylroi baterial infection, food sensitivity to wheat, corn, white sugar, brown sugar, and cane sugar, and combination food intolerance to fruit and sugar, and toxicity levels of Alumimum, Iron, Antimony, Cadmium and medications (chemicals). The blood samples she took this day result in determining I have an Egg and Ginseng intolerance to boot. Frigin EGGS!!!! are you kidding me.. The one breakfast Staple I had left... UGH $&**#. The ND tells me she's highly confident that we can fix the ITP issue by getting rid of the H pylori via a Herbal and Homeopathic regiment over the next 30 days. I'm convinced and decide that I'll try this before I go down the IVIG path and the road that likely follows.

Yes, I'm skeptical as the Naturopathic things seems like witchcraft, the doc was cool and didn't seem weird, but felt like I was dealing with some kind of wiccan mumbo jumbo if you know what I mean. But what the hell, it felt like a positive approach better then the doom and gloom from the Hematologist and the internet.

So, I show up to the IVIG appointment as originally scheduled and tell them I'm foregoing the IVIG for the moment while I participate in this wiccan experiment. We do the blood test to check my platelet count, remember it was 12K the week before, I was still on 10Mg of prednisone and had been dropping on that dosage for three consecutive weeks, and dropping consecutively each week on all the dosages below 60Mgs.

The results come back and I'm miraculously at 80K!.. WTF right? The nurse is confused, she thinks I'm self medicating at 60Mgs or more. I explain the only thing that changed from the last week was I had started the Paleo diet. So obviously I'm excited and cut my steroids off completely a day or two later. The following weeks blood test has me up to 89K, which tells me its not the steroids making this thing go up and its looking like the diet is cause.

So were caught up to present day. I'll go in for another blood test in 7 days to see where I'm at. Meanwhile I started my ND regiment of herbal and hemopathic stuff to kill the H pylroi and get rid of the toxicity levels of other stuff. I'll update (good or bad) as I progress here.

Interesting story levequejd. It is excellent that counts seemed to have bounced up.

Question for you. Would it be difficult to list all the prescription drugs you took two or three months before the counts dropped? Or maybe some unusual over the counter drugs before hand too.

Hal,

Id been consistently sick for about two years leading up to the diagnosis, which was very abnormal for me. The symptom was the same the whole time, bad chest cold that felt like bronchitis or pneumonia that took me about 30+ days too get over everytime it took hold. Extremely week and hard to breath, probably similar to minor asthma. I was on antibiotics about 4/5 times during this two year period, with the last round probably about three months before i started seeing signs of the rash I mentioned previously. Additionaly, i had been on steroids several times during this period to treat poison ivy reactions.

At one point i had moved the family out of the house and had air quality tests run to check for mold, etc. everything checked out perfectly ok air qualty wise. I was in the process of getting the well teated also, but the ITP came to light before i brought in the sample.

So just did another blood test this morning and the count is back down to 23K. Bummer!! Two things to note: I started a herb and homeopathic regiment on the 31st and I've had gerd last night and still lingering today, which had been none existent within a couple days of starting Paleo.

Supplements for toxicities (Aluminum, Iron, Antimony, Cadmium, and Chemical(Medications)
- Parotid PMG: 1 tablet twice a day
-Silymarin: 1 tablet twice a day
-Chelaco: 1 tablet twice a day
- Detox Formula: 1 tablet twice a day
- Pekana Detox & Drainage kit: 8 drops twice a day (Homeopathic)
- Pekana Toxex: 8 drops twice a day (Homeopathic)
Supplements to address Bacteria Infection (H. Pylroi)
-Herbal Tincture: 1/2 tsp three times a day
- Gut Flora Complex: 1 tablet twice a day
- Artemisinin Complex: 1 tablet twice a day
- Spanish Black Radish: 1 tablet twice a day
-Bacterial Nosode: 8 drops twice a day (Homeopathic)
Cellular function supplement
-Kali Sulph 6x: five tables three times a day

PS: I had a bunch of cheese yesterday afternoon and some frozen fruit cocktail deal. Now that I think about it, I bet there was sugar added to the fruit and since I have a combination fruit and sugar intolerance. That may have kicked off the gerd. A song keeps coming to mind. Good times, I miss the good times b/c of the good times...

I know that homeopathic remedies are fairly watered down [at least that is what I was told] - but that is a lot you are taking, did you introduce one at a time & and a new one slowly? I'm just wondering about taking all of that.

Now what works for me with acid reflux is ginger, I get a container at the sushi bar & if I feel a meal may cause a problem I'll eat it after that meal - crazy huh?! So far it doesn't seem to have knocked my platelets down, nor has any food.

Hope your next count is lots higher!

After trying and checking out a LOT of "diets" I have been a Whole Food Plant Based Vegan for 2 years. Animal proteins are notorious for causing autoimmune diseases. I will eat anything that is a plant and NOT packaged food of any kind. When I started reading the ingredients in the stuff I was eating I freaked out!!! What are all those chemicals and refined sugar doing to my body!I I lost 65 pounds, got off all my blood pressure and statin meds and am feeling wonderful. I sleep well, I have no stomach issues, lots of energy. Food is delicious and filling and it's amazing the dishes you can make that are satisfying. For a laugh I made carrot "dogs" for our BBQ. Surprise!!! All those carnivores loved them!!
Yes, I was diagnosed with ITP about 8 months ago and have been doing the prednisone thing since then and my counts are up and down. I am working with a DO for "alternative" testing and hoping something will show up there. No matter what lifestyle you chose be sure it's balanced and natural. I wish everyone the best of outcomes.

I wish that more people believed that diet makes a difference! It might not 'cure' whatever health issue a person has, but it can make a huge difference in overall health.

I did AIP after I was first diagnosed. I stayed on the diet for about 5-6 months. Much like someone else who replied above, I did not have any success with platelet count. I did feel much better, lost about 15lbs, no indigestion, clearer skin, etc. My chronic sinus infections seemed to go away in that I haven't been on antibiotics in about 16 months (right before I was diagnosed). I've had 2 or 3 colds, but that's been it. Occasional sinus pain with those colds, but nothing like I experienced before.
Since then I've been to functional doctors, and have been a few supplements. The one consistent supplement was vitamin D, and I get Vit C transfusions.
As a point of reference, I started by following these ladies: autoimmunewellness.com/
They try to make it as painless as possible. AIP is not just a diet in their minds. It's a lifestyle change, which I wholeheartedly buy into. Get more and better sleep, stress reduction, exercise, diet, nature, etc.
I've done pretty much all of these things.
I'm now on Promacta. I had a bit of a rollercoaster with it, in that it seemed to help, then it didn't, then it did. It started helping consistently when I switched to intermittent fasting (I don't eat for about a 15-18 hour period). Which basically means I skip breakfast. Coincidence? I don't know. But not I'm weening Promacta very slowly, and I'm keeping the faith that the diet and lifestyle changes are not just something you do for a short period of time to reset your body, but are a persistent way of life.
As for diet, I follow a paleo template at this point. I've had food sensitivity tests, and the one consistent piece was that I react to dairy. I've also heard dairy can be a cause of sinus issues. At any rate, that's the one thing I make a point of staying away from.
It's trial and error, and I think if you can, it's worth sticking with it, making adjustments based on how you feel. It's a slow, tedious process, but IMHO it's worth it.

Thank you for sharing your stories! I’ve begun looking into paleo. I think it may help my energy levels.

I recommend checking out Dr. Michael Greger at nutritionfacts.org. If you search Paleo you will get lots of information.
As I have said above..I am a Whole Food Plant Based eater. I have found this lifestyle to be the easiest to stick to after years and years of "diets". The first thing is not to think of any food change as a "diet" or you get into the mindset of "when I get off this diet...." Always remember everything you put in your mouth affects your body.

I absolutely believe these diets are great for energy levels. If you haven't tried these diets before, be aware that you may lose weight rapidly up front. The easiest way to offset this is by consuming more fat based products. But you can always eat sweet potatos, plantains, root veggies, etc. I consume a fair amount of avocado, coconut in all its forms, olive oil, avocado oil, etc. Despite what you may see in mainstream media, saturated fat is not the enemy. When you consume less carbs, your body needs to burn something for fuel, and ideally that would be fat. What I can tell you is that my cholesterol levels are fantastics, and in fact have gone DOWN despite the amount of fat I consume.
I highly recommend following Chris Kresser when it comes to a Paleo diet. He's not strict, and refers to it as a template, understanding that we're all individuals and react differently. You need to find what works for you, but Paleo is a great place to start, and adjust from there.
From an autoimmune perspective, I also recommend Amy Myers. She's a little more hardcore about the whole thing, but very interesting. Terry Wahls is also good, tho I admit I haven't read her book, I've only heard her in interviews. But she's a Dr who was wheel chair bound with MS, revamped her diet and lifestyle, and now practices medicine and takes dancing lessons. Crazy.
I agree with jhend1125, don't think of them as diets. Really, everyone is on a "diet", that's what you eat on a day to day basis. It's more a lifestyle. And once you get into it, and have a vested interest, you start to look at what can I do to sleep better, relax, be more mindful, enjoy life. And really, whether we're sick or not, isn't that what it's all about?

I found these two great articles. My understanding is that they help explain how modifying one's diet may help/ lead to healing autoimmune conditions. (Note in the second article that even with careful avoidance of the offending food it may take up to 2 years for IgG antibodies to die off.)

www.thepaleomom.com/gluten-cross-reactivity-update-how-your-body-can-still-think-youre-eating-gluten-even-after-giving-it-up/

www.thepaleomom.com/can-paleo-or-aip-diets-cause-loss-of-immune-tolerance/

Another good source! Sarah Ballantyne is a Ph.D with first hand experience of with autoimmunity. It’s hard to stay so strict for that long, but hopefully minimizing our exposure will go a long way. I’m certainly not perfect on the paleo front and sometimes it’s not worth the mental stress.

ytsejam02 wrote:

Another good source! Sarah Ballantyne is a Ph.D with first hand experience of with autoimmunity. It’s hard to stay so strict for that long, but hopefully minimizing our exposure will go a long way. I’m certainly not perfect on the paleo front and sometimes it’s not worth the mental stress.

Indeed! I'm a fan of Sarah Ballantyne-- she has a lot of good recipes, tips, and scientific articles. I found these very interesting reading, and the theories make a lot of sense to me.

I hear ya on the difficulty of maintaining AIP/ Paleo! I resolved before I started to do the best I can, but try not to get too stressed out in the process (I don't always do too well with that part ) and give myself leeway to "cheat" when the mental anguish is not worth it. I also agree with you that doing the best we can and minimizing exposure can go a long way, too.

Oliver091117 wrote:

I found these two great articles. My understanding is that they help explain how modifying one's diet may help/ lead to healing autoimmune conditions. (Note in the second article that even with careful avoidance of the offending food it may take up to 2 years for IgG antibodies to die off.)

www.thepaleomom.com/gluten-cross-reactivity-update-how-your-body-can-still-think-youre-eating-gluten-even-after-giving-it-up/

www.thepaleomom.com/can-paleo-or-aip-diets-cause-loss-of-immune-tolerance/

That is a nice website for gluten and related Oliver. Nice clear explanations.

Another thing that might be of interest to you from a dietary perspective is 'Arginine' consumption - especially in regards to T cell (row 3 & row 4) ITP. Take a look at this study.
"Arginine and Immunity"
academic.oup.com/jn/article/137/6/1681S/4664953

Reduced Arginine consumption leads to reduced immune system T cell proliferation - which is how some immune suppressants work, eg MMF. When T cell cloning/proliferation is required to go after a large quantity of TPO or megakarycytes, have to think this is a good thing. At least, on the margin.

If you haven't seen this, here is a good list of foods and there Arginine and Lysine content.
www.herpes-coldsores.com/lysine-food-chart.htm
Whey protein powder and Yogurt are my preferences.

Great article, HAL! Thanks for the tips!

Since I'm currently avoiding dairy (I've recently learned dairy is a big culprit in causing pain in my hands/arms and legs) the seafood and turkey sources of Arginine jump out at me.

I used to eat fish all the time. Need to get back in the habit myself.

On Whey protein. The Casein is supposed to be filtered out. Casein is the bad part of milk, from gluten perspective, as you can see on the on Paleo Mom website.

Hal9000 wrote:

I used to eat fish all the time. Need to get back in the habit myself.

On Whey protein. The Casein is supposed to be filtered out. Casein is the bad part of milk, from gluten perspective, as you can see on the on Paleo Mom website.

Huh, interesting!

I'm vegan too and am considering a vegan AIP diet - researching that now. Have you tried that? I'm wondering if that my help my counts.

KimInATL wrote:

I'm vegan too and am considering a vegan AIP diet - researching that now. Have you tried that? I'm wondering if that my help my counts.

If you are vegan I would strongly recommend against AIP because the diet eliminates pretty much all sources of protein except for meat. If you are not eating meat and eliminating all other sources of protein (dairy, eggs, seeds, nuts, beans, etc) you will become very malnourished and that is not good for your counts and overall health.

I am not vegan, but I know some people who have greatly improved their health with a vegan diet (as long as you get enough/ balanced vegetable proteins).

I have experienced many improvements in my health with AIP, but it is a LOT of work and effort to maintain. I have not yet experienced higher counts. For me it's very worth it, but it's definitely a long-term and ongoing project.

I would definitely suggest doing either a vegan diet or AIP, but not both. I hope this is helpful, and good luck!

I agree with Oliver, AIP + Vegan would be too restrictive. They are a bit opposite I'm their ideologies, but AIP is more than a diet, it's lifestyle changes. Sleep, mindfulness, exercise, things of that nature. I did AIP for 6 months for the diet. I adopted lifestyle changes. Some I've kept, some I've relaxed, but should probably get back to for stress management.

Overall I'm still on my journey with the goal of being med free, but I've never felt better. And I have a very positive outlook.

So, as I said I agree with Oliver. Go with one but not both. If you're unhappy with one or not feeling good, try the other. Everyone is different, so you have to figure out what works for you, that's why it's a journey. Some are shorter than others.

Good luck, and we'll be here if you need us!