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  • #16
    Originally posted by Sundoggy View Post
    However, at that point, having already tried an autoimmune/anti-inflammatory diet (though not as strict as now), I was eating everything -- gluten, sugar, grains, dairy, nuts, nightshades... and I had almost no pain! This makes me wonder if some cases of autoimmune arthritis are responsive to diet, and others not? My dad tried various dietary changes with his RA but had no luck, back in the 70s and 80s. Is it possible my genetic strain of RA is not related to diet? Well, for now, despite no evidence to support it, I'm going to believe that diet is critical and continue following all of this super super strictly.

    BTW, just tried a new breakfast -- ground chicken with mushrooms, asparagus and onions -- yum! Also eating salmon for breakfast and chicken sausages. The trick I've discovered is to wait to eat bfast until 10 or 11 -- then I can stomach "regular" (not traditional breakfast) food.

    OK, not giving up here!!!
    : )
    I have to say that I agree it seems some people with autoimmune issues seem to respond very clearly to foods - even trace amounts, while others don't. But I think that even if there is no obvious connection between food and relapses, eating a really clean, healthy diet is a good way to support your body. For example, I have MS and my husband has psoriatic arthritis (very similar to rheumatoid arthritis). When he gets flare-ups, he's basically crippled and has extreme pain just walking from one room to another. We've tried every diet-related thing we can think of, and there seems to be no connection. We cut out grains, dairy, corn, legumes, nightshades, eggs... When he was eating 'the cleanest' he had the most pain. Then at times he'd go back to eating dairy or gluten to see if there was a reaction, and nada. For my MS, I cut out gluten, dairy, and legumes, and was eating lots of veggies and fruit and fish and grassfed meats...I haven't had any MS flares in almost 2 years, but I still have a crippling fatigue and when I cut out non-glutenous grains and increased my veggies and fruit, my intermittent IBS came back with a veangence...After reading The Fiber Menace, I've working on reducing my daily fiber (sorry, veggies and fruit!) and I'm taking a NAG supplement to help my body repair my digestive system, which seems to be working. I could go on and on...

    As for the breakfast issue, I tend to do what you do, or I IF and skip breakfast all together (now that I'm in the habit of doing this, eating when I first wake up is a little weird to me.) Sometimes I just have some hamburgers with sauteed zucchini and onion for breakfast, which doesn't seem weird anymore either.

    I also want to second the advice that this is indeed a marathon. I get frustrated. A lot. I often want to give up and eat crap. Occasionally I do - and then I dust myself off and get right back on the wagon, because even if my fatigue never seems to get better, or my IBS seems hopeless, it only takes one day of eating crappy food to show me how much worse I could be feeling.

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    • #17
      Originally posted by BestBetter View Post
      I have to say that I agree it seems some people with autoimmune issues seem to respond very clearly to foods - even trace amounts, while others don't. But I think that even if there is no obvious connection between food and relapses, eating a really clean, healthy diet is a good way to support your body. For example, I have MS and my husband has psoriatic arthritis (very similar to rheumatoid arthritis). When he gets flare-ups, he's basically crippled and has extreme pain just walking from one room to another. We've tried every diet-related thing we can think of, and there seems to be no connection. We cut out grains, dairy, corn, legumes, nightshades, eggs... When he was eating 'the cleanest' he had the most pain. Then at times he'd go back to eating dairy or gluten to see if there was a reaction, and nada. For my MS, I cut out gluten, dairy, and legumes, and was eating lots of veggies and fruit and fish and grassfed meats...I haven't had any MS flares in almost 2 years, but I still have a crippling fatigue and when I cut out non-glutenous grains and increased my veggies and fruit, my intermittent IBS came back with a veangence...After reading The Fiber Menace, I've working on reducing my daily fiber (sorry, veggies and fruit!) and I'm taking a NAG supplement to help my body repair my digestive system, which seems to be working. I could go on and on...



      I also want to second the advice that this is indeed a marathon. I get frustrated. A lot. I often want to give up and eat crap. Occasionally I do - and then I dust myself off and get right back on the wagon, because even if my fatigue never seems to get better, or my IBS seems hopeless, it only takes one day of eating crappy food to show me how much worse I could be feeling.
      Sounds like you eat like I do. I'm not sure what NAG is...

      I saw Terry Wahl's TED talk, too. I love kale and other greens, but 9 cups?!? Maybe if I juice it... And, yes, this is definitely a marathon. One day at a time, and today seems like a pretty good day.

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      • #18
        Hi Sundoggy, I am also on a paleo type diet for auto-immune disorders. I haven't been officially diagnosed with an auto-immune disease but I have chronic neuropathy, partial paralysis, numbness, hormonal disorders and exhaustion.

        Have you ever been tested for Lyme disease?? I've tested positive for Lyme disease through Igenix labs 3 times and currently treating for this using herbal remedies (following 6 months antibiotics). You said that you came down with this after a vacation and had multiple lesions show up. I truly believe this is a bacterial / viral / spirochete issue - not your immune system malfunctioning. Most auto-immune disease is caused by pathogens in the body and the fact you had lesions show up seem to point more to being infected with something rather than your body attacking itself for no reason. I would urge you to have the test done so you can treat it sooner than later if you do have it because it's very hard to get rid of the longer it sticks around.

        As for foods, I've found I'm very reactive to all night-shades, almost all spices including black pepper, fruit, grains, coconut and seeds and eggs.. I've only recently made the connection to spices, seeds and fruit which I was eating freely in the past never realizing they were worsening the severe neuropathy. I would stay away from any pre-packaged foods and eat organic as possible. I also take L-glutamine on an empty stomach in the morning for leaky gut. My leaky gut protocol is very extensive but I find the l-glutamine is probably the most important. Along with taking pro-biotics, digestive enzymes and possibly doing a heavy metal chelation protocol. (read up on Dr. Dietrich Klinghardt and Dr.Hyman's protocols) Even look into taking a heavy metal test?

        It's tough when there is no definitive answer and you're in pain but just trust that you will find an answer and will heal.

        Best of luck to you!

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        • #19
          Originally posted by Guitar_grrrl View Post
          Sounds like you eat like I do. I'm not sure what NAG is...

          I saw Terry Wahl's TED talk, too. I love kale and other greens, but 9 cups?!? Maybe if I juice it... And, yes, this is definitely a marathon. One day at a time, and today seems like a pretty good day.

          Sorry, NAG is short for N-Acetyl-D-Glucosamine., which is used as a structural component of intestinal mucous secretions. My supplement has this in combination with L-Glutamine, an amino acid that is required by the cells in the intestinal tract. These supplements are suggested for people who are looking to improve leaky gut / digestive issues (a popular theory is that leaky gut is a key factor in autoimmune disorders).

          Have you read about the GAPS diet? It focuses on healing leaky gut, and has lots of really good scientific information on exactly what leaky gut is all about. All the info from Dr. McBride's book is on her website:


          http://www.gapsdiet.com/INTRODUCTION_DIET.html

          I tried the 9 cups of veggies/fruit, but my digestive system can't handle that much fiber. And after reading Fiber Menace, I'm actually a little confused as to how anyone can long term, but it really seemed to work for Dr. Wahls. I think it doesn't matter how many cups you're eating, as long as your overal diet is really wholesome - but that's my opinion.
          Last edited by BestBetter; 05-07-2012, 04:36 PM.

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          • #20
            Go on the GAPS diet. Your gut is compromised, leading to autoimmunity.

            (don't be scared of the source of this article. GAPS is not associated with any religion, it was created by a neurosurgeon)
            GAPS (Gut and Psychology Syndrome)

            Healing Rheumatoid Arthritis on GAPS Diet: Elli Sparks 01/11 by BethWiles | Blog Talk Radio
            Notebook of a Nutrition Nerd

            ‘THE FOOD YOU EAT CAN BE THE SAFEST AND MOST POWERFUL FORM OF MEDICINE OR THE SLOWEST RELEASING POISON' - Dr Ann Wigmore.

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            • #21
              Finally figured out that I do indeed have an autoimmune disease which explains why my joint pain, GI issues and skin blemishes (not just facial acne, but a few skin issues - including one known to be autoimmune - HS) flare up all at the same time or in quick succession.

              I'm seriously considering AIP because I think I might still have a sub-clinical autoimmune disease in addition to HS, and knowing that having one makes you more likely to have others and that there is strong comorbidity between HS and Crohn's and Spondyloarthropathy ("one of the commonest chronic rheumatic diseases, includes a spectrum of related disorders comprising the prototype ankylosing spondylitis, a subset of psoriatic arthritis, reactive arthritis, arthritis associated with inflammatory bowel disease and undifferentiated spondyloarthropathy") (source - Comorbidities of hidradenitis suppurativa (acne inversa)) . . . but I'm not gonna lie, I'm a little afraid to take the leap because I'm not sure what I'll eat.

              Should I jump in to AIP straight off or just try to keep strict paleo and see if that alone is enough to help?
              Healthy Bucket List:
              • Summit all of Colorado's 14-ers
              • Hike the Appalachian Trail
              • Do a real pull-up
              • Run a 5k
              • Be "Hot For Training Camp"



              Check out my journey at Outdoor Amy's Blog.

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              • #22
                My favorite website about the AIP is thepaleomom.com and is run by Sarah Ballantyne, PhD. It has info on the best way to get started. I am in the middle of her new book, The Paleo Approach, which has been very informative. I am backing into it since I am just not ready to give up hot sauce but I have read that going all in is the best way to do it. That is my next step.

                Practical Paleo has a section on AIP, including menus and recipes.

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                • #23
                  I'm new to this too, but I read up on the autoimmune protocol at first, but decided to try primal low carb first then go from there...

                  You are allowed coconut aren't you? I got some big coconut flakes from Whole Foods org nothing added at all to munch on for a snack. Of course just a plain coconut opened for meat works too

                  Also google paleo breakfast ideas I know I saw a recipe for baked acorn squash with cinnamon and a few other interesting ideas.

                  I also agree paleo mom has great recipes and she follows the autoimmune protocol I think.

                  Good luck! Let us know how it goes, I am celiac and my mom-in-law has severe RA she is starting primal but afraid that is already a huge change for her so one step at a time

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                  • #24
                    I started the AIP 6 days ago after being pretty strict Paleo ( I can't tolerate gluten or any dairy) for a year and a half. I started it because I have psoriasis (not too bad, thank goodness) and pretty sure still have leaky gut. So far, to be truthful, I feel worse. More headachy, poorer sleep, possibly flatter mood, and my psoriasis is more itchy and irritating. I can imagine the latter might be because I'm giving more psychic energy to it. Has anyone else experienced feeling worse at first, or even for a long time? I am eating well-- fortunately I had already been in the Paleo groove so just cut out nightshades, alcohol, coffee, chocolate, rice. I am having a couple of cups of black tea in the morning and maybe one mid-afternoon, so I don't _think_ it's just caffeine withdrawal. I take a good broad-spectrum probiotic, but haven't had access to kombucha and non-kim chee fermented veggies yet-- I will today.

                    Any advice for me? I'd like to keep trying this for a month, but I also want to pay attention if my body is telling me this doesn't suit me.

                    Edited to add: I have a source for excellent pastured eggs. I have felt that whites have been dodgy in the past, but yolks seem OK. I wonder if I should add them back early to help avoid nutrient deficiencies, which I thought might be a cause of poorer sleep.
                    Last edited by Spinner42; 03-15-2014, 10:16 AM. Reason: Fullness

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                    • #25
                      I've eaten AIP and it's improved my AI considerably. It's restrictive, yes, but in time you'll probably be able to reintroduce some foods. I would echo VH67, and check out The Paleo Mom on her website. Her book, The Paleo Approach, is a wealth of information for anyone starting out or who's been at it a while. Please check it out. So many people with AI have benefited from the AIP. Some see instant results while others need more healing time. Best of luck to you!

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                      • #26
                        Thank you BJDMINN. I hope I'll be one of them! I have read thepaleomom blog, and bought her book. Highly recommended for sure, and looking forward to the cookbook! Maybe because I have already been eating strict Paleo for a while, the additional restrictions really don't bother me. What concerns me is that I actually feel worse in some respects-- headaches, poorer sleep quality, flatter mood. Has anyone else felt worse when beginning this? I'm eating so well-- it's all such great, nutrient-dense food-- that it's hard to find a reason for feeling worse.

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                        • #27
                          Hi Spinner! Frankly, it's been so long since I started, I don't remember! Are you eating enough fat w/ meals? Possibly intolerance to something you're eating now? I found out I tolerate coconut oil but too much coconut milk or coconut isn't good for me. Some on AIP push starchy veg. but frankly, I can't tolerate it. To much fruit can be a problem for people as well as FODMAPS. It's all so individual. Experiment and keep a log of what your eating. See if there's correlation between certain foods and how your feeling. Best to you! BJ

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                          • #28
                            The headaches and flat mood sound caffeine related. Coffee often has more caffeine, so even if you have tea a couple times per day it may still be much less than you had before. How much and what brew method did you use?

                            I started aip - also for a skin issue -last Oct and began feeling and seeing positive results within a couple of weeks. But I am on an aip group, and occasionally someone does report feeling crappy in the beginning and sometimes it lasts for a few weeks. Maybe it is the caffeine. Some people say its a sign of healing or detoxing - I don't buy into that but maybe it is. Have you added any foods you weren't eating before? Anything new could also be the culprit.

                            Do you supplement with d3 and magnesium - I found that significantly helped my mood.

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                            • #29
                              Thanks to you both catgirl and BJDMINN. I appreciate the responses very much.

                              I have been drinking about two cups of tea (loose leaves brewed in a pot) each morning with cloves, turmeric, and ginger and a spoonful of coconut oil. Surprisingly easy to let the coffee go!

                              Last night I added magnesium, on the recommendation of many on this board in various threads. I didn't think about the caffeine in the kombucha I had last evening, so I can certainly blame early evening caffeine for a bad sleep!

                              I'd say my tummy feels... calm and light! Strange thing to say, but I think something's working for me, gut-wise, so I hope the rest of me catches up

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                              • #30
                                Originally posted by Spinner42 View Post
                                Last night I added magnesium, on the recommendation of many on this board in various threads.
                                WHOA. Do NOT like the digestive effects of the magnesium citrate. Yeah, I knew it was used as a laxative (which I don't need at all) but, not to be too descriptive, eww. I see some people use magnesium malate or other magnesium -ates. Any recommendations? BTW, I was taking 150 mg/day, and tried it for two days.

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