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Have you ever tried an autoimmune diet protocol (like Paleo AIP)?

Discussion in 'General Treatment' started by drob31, Mar 3, 2015.

  1. drob31

    drob31 Senior Member

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    I was looking for feedback for anyone who has tried this for their condition. It's designed for autoimmune diseases, but if CFS is indeed an autoimmune disease, theoretically this would have a very positive impact on CFS symptoms.

    A good reference for this is Phoenix Helix (ironic about the Phoenix part. :)

    http://www.phoenixhelix.com/2013/05/19/what-is-the-paleo-autoimmune-protocol/

    Also, the Paleo mom:

    http://www.thepaleomom.com/category/autoimmune-2/the-whys-of-the-aip



    To begin:

    "Eliminate Permanently

    Processed Food
    Emulsifiers and Thickeners (guar gum, carrageenan, etc.)
    Refined Oils
    Refined Sugars
    Grains (including corn)
    Dried Legumes (including soy and peanuts)
    Stevia (and other non-nutritive sweeteners)

    Eliminate for 30 Days and Reintroduce

    Eggs
    Dairy
    Nuts (including nut-based oils)
    Seeds (including coffee and cocoa and seed-based oils)
    Nightshades (both vegetables and spices)
    Fresh Legumes (green beans and green peas)
    Alcohol
    Fruit-based and Seed-based Spices"


    Even if you haven't tried it, do you have an opinion on it for feeling better in general?
     
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  2. AndyPandy

    AndyPandy Making the most of it

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    I have been working on gut issues for about a year or so now. Since becoming sick with ME/CFS mid 2011, I have had bad IBS with pain, nausea, diahorrea, constipation, gastric reflux, weight loss (10kgs) etc.

    My symptoms are much better now and I put this down to strict diet, probiotics, slippery elm, curcumin and apple pectin. I tried glutamine but reacted badly to it.

    I had allergies and intolerances to lots of foods. I now avoid gluten, dairy, soy, sugar, egg and a number of other things which cause me trouble. I also loosely follow the FODMAPs diet and I minimise salicylates and avoid glutamates due to sensitivities.

    I am currently re-reading Susan Blum's book The Immune System Recovery Plan which includes sections on how diet can improve autoimmune conditions.

    I try to minimise processed foods. I try to have fresh juices daily.

    I did my own research on this but also had assistance from a dietician and an ME/CFS Specialist.

    I have regained 5 kilos (much needed). I think it is worth the effort.

    Best wishes.
     
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  3. AndyPandy

    AndyPandy Making the most of it

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    Just wanted to add that if I do eat gluten, dairy and sugary foods in particular, there is a noticeable increase in generalised pain and fatigue throughout the body and feeling unwell. Gastric symptoms usually come much later. Makes me think there is an immune system response going on.
     
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  4. drob31

    drob31 Senior Member

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    That's very interesting, but it's the exact kind of reaction someone with an autoimmune reaction would have, from what I've been reading. I'm not saying all CFS is autoimmune, but it seems like a percentage of it is. Perhaps an unknown autoimmune disease, or maybe it's something like seronegative antiphospholipid syndrome.
     
    Last edited: Mar 3, 2015
  5. ahmo

    ahmo Senior Member

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    I've been on an extremely minimalist diet for 2.5 years. Processed foods were never part of my diet. Eliminating gluten, dairy were first stage, then histamines and sulfur (high thiol foods). I only learned about gluten cross-reactive, and eliminated them 6-9 months ago, around the same time as I learned about immune foods, so that eliminated my nuts and seeds.

    I've now been on low dose naltrexone 6-7 months. Just this week I've sampled a seed/nut mix, and my body no longer says No, per self-testing. It doesn't want this food daily, but it seems I'm able to consider adding back some of the foods on autoimmune list. Those advocating the diet, like paleomom, suggest that after some time the body should be able to handle the foods, I think. I don't know what they think allows this to happen. Critterina has posted in her histamine journal her positive experience of 3-day water fast to reset immune system. Once I complete my current Candida/SIBO purge, if my food choices haven't increased, I'll be trying that.

    http://www.thepaleomom.com/2013/03/...re-eating-gluten-even-after-giving-it-up.html
     
    Last edited: Mar 3, 2015
  6. drob31

    drob31 Senior Member

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    Very interesting. I really think there is something to this diet. What percentage would you say it helped you?

    The 3 day fast was another thing I wanted to try, but I know my blood sugar will be struggling. If 3 days rebuilds you immune system, it's worth doing, even struggling through, and then emerging on the other end and continuing autoimmune paleo.

    So many things to try... How has LDN been for you?
     
  7. ahmo

    ahmo Senior Member

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    @drob31 I have no way of knowing whether the diet itself has helped. I'd have to review the articles to understand the reasoning behind it, because I know there's a recommendation of something like 6 weeks. So what do they believe will happen during that time?

    However, I'm quite certain of LDN's effects. I started w/ match-head sized doses, increasing by that much until I got to about .5 mg, then slowly working up to 3mg, which I held for 1-2 months, then 3.5, up to 4.5. I only used 4.5 once or twice, body didn't want to go on with that dose. Now stabilized at 4mg for nearly 3 months. I had some start-up detox + a bit of restless sleep, but these were manageable. I started in July, was up to 3mg by July, 3.5 in November. Certainly by November it was very evident that my stamina was greatly increased. This has remained. I reckon that an underlying inflammatory process has been quenched, so that there's more useable energy for me. It's terrific.:):thumbsup:
     
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  8. drob31

    drob31 Senior Member

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    The interesting thing about LDN is that it blocks opiod receptors, causing the body to produce more opiods.

    TH3 or T-helper cells are covered in these receptors. Thus you are upregulating TH3, and downregulating TH17. TH3 supresses autoimmunity. TH17 creates it.
     
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  9. ukxmrv

    ukxmrv Senior Member

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    In the early years of ME (acute severe viral onset with sore throat/glands etc) I really worked on my diet. Tried several food exclusion type diets and some of them were very basic (as per your example) and with introducing other foods gradually, this helped with allergies but did nothing for me ME symptoms.

    I'd never eaten much processed food (still don't) but cutting out gluten, sugar and milk for a year had no real effect. I can't eat nuts anyway (stomach rebels) and don't like the nightshades.

    A few years ago I got a bad food poisoning and lived on grilled meats and salads for months and then off / on for 2 years. Had no good effect on my ME .symptoms.

    Diet seems like such a personal thing with some people finding different things make a difference rather than an overall food group.
     
  10. drob31

    drob31 Senior Member

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    I agree there's more to it than diet. I think diet is one of the components though, and probably really important. But also supplementing for defficiencies, getting rid of pathogens/antigens.

    There are three main types of GMO's: bt GMO's, roundup ready GMO's, and GMO's that cause gene expression. I just wonder if last one is turning gene's on in us that need to remain off.
     
  11. Crux

    Crux Senior Member

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    I think the AIP is a good beginning place, but...there may be many more foods that can cause reactions.

    I don't know if autoimmunity caused my conditions, ( not tested ), but some foods can cause extreme neurological and viral reactions.

    For instance, if I have fermented foods, and/ or starchy foods , I will have neuritis and a shingles outbreak within 24 hrs.
    ( I've been treating myself for SIBO for 1 yr., but there's a long way to go. There can be neurological symptoms with SIBO, d lactic acidosis too.)

    For now, a lower carb., Excluding fermented foods, probiotics, etc. is helping. This reduces inflammation and fatigue.

    Another odd food reaction I had last year was with taking fish oil, lecithin, and foods with high choline. I have one copy for the trimethylaminuria gene, TMAU, but I haven't consistently had the 'fishy odor'. I've read that dysbiosis can cause a secondary version of this condition. It's treated with antibiotics.

    So, I agree that diet can greatly effect one's health. But, I must also agree that medical interventions, such as drugs, may be necessary. They have been for me.

    It seems these food intolerances have proven that my gut is the origin of these conditions. (?)
     
    Last edited: Mar 5, 2015
  12. Gondwanaland

    Gondwanaland Senior Member

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    I tried it but the timing wasn't good. I was severely underweight and just couldn't eat only meat and vegetables.

    Did you see that the Paleomom just had another autoimmune diagnosis (formerly RA+newly Hashi's)? Not meaning to be sarcastisc as I am in the same position piling up autoimmune reactions. :(
     
  13. Gondwanaland

    Gondwanaland Senior Member

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    I think I could detail my experience here.

    I abandoned packaged foods from the supermarket in September 2009. Baked my own bread at home from whole wheat flour.

    In June 2013 I went gluten free (and never cheated on that so far). It was a life-changing experience. All of a sudden all the pain (FM?), insomnia (+/+MAO-A), hair loss and polyuria were gone. For 1 week.

    In the 2nd week I ate scrambled eggs with sardines and my hair loss came back with a vengeance (and hasn't left again, I am almost looking like Larry Howard [​IMG] :().

    In July I took garlic caps for "detox" and my polyuria also came back with a vengeance.

    I started vit D supplementation and was prescribed abx. These depleted all the magnesium I had and made me acidic.
    At the same time I started a strict paleo diet - gluten free, dairy free, grain free. In December 2013 I was really depressed, with brain fog and EMF sensitive.

    In January 2014 I took my 1st sublingual MB12 - now THIS was a life-changing experience, because it not only ended all my pain (that came back from vit D and abx), brain fog, EMFs, polyuria, but also changed my outlook, attitude towards the world, depression went away - everything in a matter of 1-2 days. This is something I did not get from a paelo diet - unlike the thousands of people that post testimonials at paleo blogs/forums. My sister for instance is thriving on a paleo diet.

    The problem was that I still hadn't found a form of magnesium I could tolerate, and I wasn't supplementing cofactors. Nevertheless I went ahead and took methylfolate and experienced an explosion of uric acid (exacerbated by low magnesium).

    So from March - July 2014 I lived hell on earth trying to figure out how to recover from folate. In the meanwhile I tried a low thiol diet for almost a week and felt much worse, and tried an AIP since I wasn't tolerating many foods anyway. But then I became salycilate intolerant and could only eat rice, potatoes, meat, bananas and pears.

    That is when my order containing magnesium oxide arrived and saved my life. Again, I experienced pain relief, intolerances and MCS went away, depression, insomnia - everything improved but I was prescribed levothyroxine and just HAD to start a SSRI at the same time, because T4 only did me no good at all.

    At this point I was eating grains again (rice, lentils, beans) because I was severely underweight, and have kept them in my diet. In October 2014 I reintroduced dairy (no milk).

    In December 2014 I started T3/T4 replacement with a clear improvement in cognition and a transient energy increase, and have been trying to titrate T3 up.

    In a nut shell: a clean diet did nothing to improve my nutrient absorption.
    EDIT: but it does reduce inflammation.
     
    Last edited: Mar 11, 2015
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  14. jeff_w

    jeff_w Senior Member

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    I'm on day 5 of the ketogenic diet. I'm having way less brainfog, and my energy is better.

    This is a difficult diet to adjust to at first. I had flu-like symptoms for the first 3 days, which is normal even for healthy people going on the diet. I'm glad I stuck with it, as it was tempting to quit!
     
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  15. melamine

    melamine Senior Member

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    I have late-onset non-specific autoimmune disease. Candida diet was bad. On gluten-free I felt the same or worse. Dairy-free felt the same. I eat no prepared food except occasionally organic soup or beans with few ingredients. Like AndyPandy I have to avoid free glutamic acid and must be careful with fermented foods for that reason. I have recently eliminated dairy again but not 100% yet. I eliminated eggs because of testing but eat them occasionally.

    I need animal protein and also feel better with starches in my diet. Rice, potatoes, beans, oatmeal/oat bran, and I need the protein from them also.

    A recovery story was posted on PR yesterday and dairy and gluten-free, sugar free were part of his remarkable recovery, along with some other specific factors. His story has re-inspired me to consider eliminating gluten again because like me, he had also tried eliminating them at various times, and experiencing no noticeable changes, started eating them again. It was apparently eating vegan for a couple weeks and then adding dairy back in, that seemed to emphasize a reaction to it in the form of a lot of mucus, and that is what caused him to take notice and eliminate it. I think he was eliminating gluten around the same time. I don't know if he had already by then eliminated sugar or anything else.

    The remarkable thing about his recovery is how dependent it was on his using and trusting his intuition in making choices about what foods to eat, and also, significantly, eliminating sources of bad energy (my term, which I hope captures what he was talking about).
     
  16. PhoenixBurger

    PhoenixBurger Senior Member

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    I credit the vast majority of my recovery to dietary changes. Eliminating Gluten, wheats, noodles, caffeine, sugar, and other inflammatory foods has completely eliminated multitudes of symptoms.

    Chris Kresser was the one who lead me down this path, and he actually supports a "modified paleo" diet. Not a strict one. Strict paleo is way too close to Atkins diet in my opinion (tons of protein and zero carbs). I needed carbs to feel normal, so I did Paleo with potatoes or white rice, and flourished on it like never before.

    @ahmo
    The basic logic is that these wheat proteins damage the gut, and create perforations in the intestinal wall, resulting in leakage of waste materials into the bloodstream. The absence of these inflammatory / gut permeability-inducing substances allows the gut to heal, and the blood/gut ... blood/brain barrier to heal. This is why people can re-introduce these foods later on, after some healing time has passed. I found this to be true as well.
     
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  17. AndyPandy

    AndyPandy Making the most of it

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  18. KarenS

    KarenS

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    I have several auto immune conditions (RA, Hashis, Graves, Celiac). And, of course, I have lots of homozygous SNPs too. I've had joint pain for 15 years, sometimes so severely that I haven't been able to keep active. There is never a day without pain, but some days I feel good enough to ride my horse or hike, or whatever. My gut has also been bad since I was a kid (I'm 60 this year). I've never been diagnosed with any blood sugar problems, but I have frequent bouts with hypoglycemia (sometimes bad enough I have to forego planned activities). I am very active and somewhat athletic. I'm also tough, so I frequently just go ahead and do things that another person in my condition probably wouldn't do. I have chronically low blood pressure and low body temp as well. And, also frequent electrolyte imbalances, even though my blood work looks good (I'll feel like I'm going to pass out and drinking 1t salt in water will perk me right up). I constantly fight hypothyroidism (thyroid removed now, but still hypo)

    I've tried a Paleo AIP diet, which helped me some, but then I just went back to eating sugar because of all the tempting substitute recipes (like bread with almond flour, muffins with almond flower, coconut cream this and that). So, next stop was a keto diet. I did really well with this for about 6 months. Dropped 10 pounds (i'm about 20 pounds overweight), had great energy, aches and pains improved a bit. But, then, I started a long, downhill spiral (about 13 months) with my thyroid getting worse and worse. Added back the 10 pounds, plus 5 extra.

    Next I found the Perfect Health Diet when exploring why my thyroid had gone in the dumper on the Keto diet. They said it had to do with the Keto diet not providing enough glucose for my endocrine system. This made some sense to me, so I followed it for a few months, but my gut got worse again and my thyroid didn't improve. One day while I was on the PHD FaceBook page, I ran across a post about a family of 4 who had been on an all meat diet for 22 years. Her story sounded a lot like mine, so I peaked up with interest, but it didn't make sense how meat only could give you the nutrition that a body requires. However, after a week of intense research, I found that the only vitamin missing is C and it sounds like the body really doesn't require much C at all unless one is consuming vegetables (they up the requirement for C because they cause oxidative damage even though they are touted to be loaded with vitamins).

    After almost a month on this way of eating, I am feeling really, really good. My gut feels good, I have good energy and most of all my joints are not hurting! I do still have some minor tendon aches, but those too are almost gone. My blood pressure is normal for the first time that I can ever remember. My pulse is normal. I'm having to lower my thyroid medication because I was having signs of hyperthyroidism. My body temp is good now too.

    I know it's only been a month, but I've never seen this kind of results with any other way of eating I've ever tried. I've cut everything out of my diet except meat and water. And, this weekend I actually went and stocked up some gallon water bottles with water straight out of my well, bypassing the water softener so to take advantage of all the naturally occurring minerals in the water.

    Good health to you all.
    Karen
     
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  19. KarenS

    KarenS

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    Paleo isn't high protein. It's somewhat higher fat, but still has plenty of carbs, just not legumes, grains or dairy.

    Atkins is also not high protein. It's high fat, moderate protein and moderate non-starchy veggies.

    To be satiated and satisfied, one needs both protein and fat. Otherwise, the body will have cravings. There is science which validates this.

    Karen
     
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  20. KarenS

    KarenS

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    The main reason I believe the "eat meat, drink water" way of eating will work for me is because eating meat only gives me a lot of fat, which my body craves, and a way to keep my blood sugar even with extremely low insulin. The protein in meat is turned into glucose through gluconeogenesis which is a slow and steady way to provide the brain with glucose. At the same time, the body remains in a state of ketosis, which wards off a lot of endocrine and sugar related issues. I think this process is what has made my joints stop hurting.

    Karen
     
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