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  • Anyone else on Autoimmune Protocol?

    Hi,

    I've started the autoimmune protocol this week, started Primal 3 weeks ago. I came down with sudden and severe autoimmune (rheumatoid) arthritis and neuropathy (nerve disease) on my honeymoon 1 1/2 years ago, and have been on disability for a year now, with limited mobility and a lot of pain. Trying every traditional and nontraditional approach I can find that makes sense to me. Am on heavy duty meds.

    So as of now, I am very strictly not eating: eggs, dairy, grains, nuts, sugar, soy, nightshade veggies, beans... I think that's it!

    Here's my question: what do I eat, especially for snacks and breakfast? I was doing fine with just cutting out grains and sugar, but now that I'm cutting out eggs and beans and nuts and dairy... Help! Any ideas?

    Also, would really love to hear from anyone with autoimmune disease who has had success with Primal and/or the Autoimmune Protocol. That would really give me some encouragement and hope. Are you out there?

    Thanks!!!

    Christina

  • #2
    I'm bumping up my own post because not a single person has replied!
    Is there really no one else doing the Autoimmune Protocol? I would love to hear from you.

    I am still following primal/AI protocol very strictly. Not seeing any results in my symptoms yet -- still having severe joint pain and nerve pain.

    I want to add that I'm doing lots of supplements right now -- fish oil, cod liver oil, vitamin d, Mark's primal blueprint Master Damage Control formula, probiotics. I finally raised my Vitamin D level to the normal range (50) after trying for 1 1/2 years, and have also raised by B12 level to above normal, so I feel great about those two things.

    I have only had one cheat this whole time -- sucking on some licorice after my chemotherapy treatment last week (Rituxan). It had gluten and corn starch. Otherwise I am 100% compliant (except a few times I've had plain cashews because I was really hungry -- any thoughts on cashews and AI protocol?).

    I'm committed to staying the course for at least 3 months to see if this works, but would love to hear some success stories to inspire me! It's hard to eat so restrictively and still be having so much pain, but maybe it just hasn't been enough time yet.

    Thanks!

    Comment


    • #3
      I am sorry not to be of more help but I don't know anything about AI protocol, and from your lack of responses, it must not be too common. As for breakfast and snacks the best I can suggest is simply eat foods you like despite the fact they aren't traditional breakfast or snack foods. If that means having a hamburger with sautéed onions and mushrooms for breakfast, so be it. Maybe berries or some other fruit as a snack. You may want to try intermittent fasting whereby you eat two larger meals per day, say lunch at 1:00 and dinner at 6:00, then fast until lunch again. Fasting can help the body repair and recuperate and it eliminates the "what to have for breakfast" issue. Sorry you are going through all this. How odd that it started so suddenly. Do the doctors have any idea what might have triggered your health problems?

      Comment


      • #4
        Hello;

        So sorry about your diagnosis. I also have what the doctors call RA and it was incredibly severe. All my joints were so terribly swollen that I had to have fluid drawn off some of them to keep the ligaments from rupturing. Extreme pain and fatigue - so I feel for you.

        I have had amazing success with a combination of drugs and diet. I was able to get off steroids and azathioprine since starting the autoimmune protocol. I still take tocilizumab by iv once a month and I still need it, but before the diet I was in pain 24/7 even with the drugs.

        I pretty much did the plan you are doing. The nightshades can be very sneaky so make sure you are reading all labels. Anything with "spice" "flavor" or any other weird terms may very well have paprika in it. Anything with potato starch would have me badly flared. I would avoid the cashews for now.

        As far as the nerve pain, I was going to suggest a methylated B12. Is the type you are taking methylated? I had nerve pain before my diagnosis and B12 shots cured it, but I developed an allergy to them. Regular oral B12 did not help, but once I started the methylated B12 my levels went back up. You could also look in to taking L-acetylcarnitine. I tried low dose naltrexone with another supplement (can't think of the name now) and got modest benefits from that - I do know someone with MS who had great results from it - so you may want to look in to that. Make sure your vitamin D in D3 and not D2 and that it is not in a crappy oil. I feel best if my D3 is in the upper end of normal, but like you it took 2 years to get there.

        What prescription meds have you tried? I presume you have tried a few of the TNF inhibitors? Rituxan is not a great drug for RA.

        It is hard to adjust to eating on the protocol at first but you will get the hang of it I often fast through breakfast, but if I am eating I just eat regular dinner food. My favorites are homemade chicken stocks, crispy pork belly, ground beef with broccoli. I try to avoid snacking, but if i snack it is usually fruit. I've been sneaking in eggs and some nuts now and again lately and I'm feeling stiff in my hands, knees, and wrists this week.

        The most important thing to remember, is that dealing with this disease is a marathon not a sprint. If you hold your breath waiting for the moment you feel great you won't do well. I know it is damned hard when you are in pain and immobile. But try to "settle-in" emotionally for this to be a long journey looking for the right combination of drugs and diet for you. Get help from anyone in your life that will help you - they can make food, clean, etc. Also, if you have access to a warm water pool see if you can get there for some stress-free movement.

        Sorry - I'm blathering on here! Good luck and keep us posted how things go.
        Using low lectin/nightshade free primal to control autoimmune arthritis. (And lost 50 lbs along the way )

        http://www.krispin.com/lectin.html

        Comment


        • #5
          I have never heard of Autoimmune Protocol but I do have two autoimmune diseases: type 1 diabetes and celiac disease. I started eating low carb in March and have been making the switch to primal eating in the last month (slowly but surely!). I have avoided gluten since I found out that I have celiac disease, and the low carbs has DEFINITELY improved my blood sugars. I know this info doesn't really help your situation. Anyway, in terms of what you can eat it looks like you're limited to some fruits (mainly berries), allowed veggies and meat. Not being able to eat eggs makes it difficult. I agree with Miss Understood - you will have to think outside of the box and come up with non-traditional breakfasts. I hear a lot of people like to eat leftovers from dinner the night before for breakfast and lunch, so that might be an option for you. What about smoothies too? I wish you the best of luck and hope that you start feeling better!

          Comment


          • #6
            @ Miss Understood, thanks for your reply and suggestions. I haven't tried IF yet but am trying to get up the courage. For some reason it makes me really nervous! However, fasting has been proven (in medical studies) to benefit RA patients.

            As for your question about the sudden onset -- it's actually not rare to have sudden onset with rheumatoid arthritis or other autoimmune diseases, although some start gradually. In my case, it was triggered by dyssentary on my honeymoon in Greece. But my dad had RA, and there is a strong genetic factor, so in my case it seems to be a combination of genetics with an environmental trigger (dyssentary tirggering a whacky immune response). I have also had another case of severe autoimmune disease (Graves Disease, hyperthyroid) so I seem to be prone to them.

            One day I was climbing the Parthenon, the next day all the joints in my body were screaming in pain and I was covered with lesions. I tested positive for a very aggressive form of RA. Now I use a mobility scooter because my walking is so limited. But I am very very hopeful that I will get at least somewhat better, and I love the Primal way of eating.

            Comment


            • #7
              In my limited understanding of autoimmune diseases I believe it is like your own body is attacking itself to rid itself of what it believes is unwanted foreign substances. I do believe your new way of eating will help give your body the nutrients it needs to heal itself. It will take time.

              Comment


              • #8
                Jammies -- your "blathering" just made my day!
                : )
                Your response is so so helpful. I have not been strict about paprika, though I haven't had any lately. Is cayenne out too? What about cumin and turmeric? We have been making curries and I'd like to keep doing that.

                Re meds: have had a tought time tolerating them. Really severe side effects (severe intractable migraines from MTX, increased nerve pain from TNF inhibitors, lung disease from Orencia) so that's how I've ended up with Rituxan after only 1 1/2 years of RA. So far the Rituxan is helping somewhat and aside from initial side effects in 1-3 days after chemo, no other side effects.

                BTW, a few weeks ago I read your lectin link and found it incredibly helpful in understanding all of this, and why to restrict certain food groups.

                I've just started L-carnitine for the neuropathy. Right now my B12 is off the charts high (over 1,000) after doing injections, so I think I'm OK with that. The nerve pain and RA seem very tied to each other.

                You suggested finding people to help -- I sent my sister a bunch of books re primal eating, and she started primal at the same time as me. She lives on the other side of the country, but it's been SO great to have a buddy. Like you, she is really encouraging me to think long term and not get discouraged if I don't have immediate results.

                Thanks again for your response -- really gives me hope!

                Comment


                • #9
                  Originally posted by Sundoggy View Post
                  Jammies -- your "blathering" just made my day!
                  : )
                  Your response is so so helpful. I have not been strict about paprika, though I haven't had any lately. Is cayenne out too? What about cumin and turmeric? We have been making curries and I'd like to keep doing that.

                  Re meds: have had a tought time tolerating them. Really severe side effects (severe intractable migraines from MTX, increased nerve pain from TNF inhibitors, lung disease from Orencia) so that's how I've ended up with Rituxan after only 1 1/2 years of RA. So far the Rituxan is helping somewhat and aside from initial side effects in 1-3 days after chemo, no other side effects.

                  BTW, a few weeks ago I read your lectin link and found it incredibly helpful in understanding all of this, and why to restrict certain food groups.

                  I've just started L-carnitine for the neuropathy. Right now my B12 is off the charts high (over 1,000) after doing injections, so I think I'm OK with that. The nerve pain and RA seem very tied to each other.

                  You suggested finding people to help -- I sent my sister a bunch of books re primal eating, and she started primal at the same time as me. She lives on the other side of the country, but it's been SO great to have a buddy. Like you, she is really encouraging me to think long term and not get discouraged if I don't have immediate results.

                  Thanks again for your response -- really gives me hope!
                  In the beginning a tiny bit of paprika or cayenne pepper was enough to flare my joints so please don't eat those!!! I accidentally bought mustard with paprika in it once and it was enough to cause pain. Apparently the solanine in nightshades will build up in your system so even eating a tiny bit can put your over the threshold. Over time, when you stop eating them, your levels will drop and then you won't be so sensitive. Now I can have a small amount here and there and get away with it

                  Black pepper, white pepper, szechuan pepper, tumeric, cumin, horseradish, coriander, black mustard seeds, cilantro are all safe.

                  I went through the gamet of drugs just like you. You've had a rough go of it though! Methotrexate is brutal. I did okay on one of the TNF inhibitors but developed an allergy to it. The Orencia and Rituxan gave me about a 25% improvement - which I was grateful for but I needed more help. Hopefully it will be better for you. The good news is that you still have quite a few drugs to try. The IL-1 and IL-6 inhibitors are good for some people. The IL-6 inhibitor is a miracle drug for me. Also, I am in the field of autoimmune research and I have seen great studies of some new drugs that will be approved later this year and after. So no matter what - Don't give up!!! Major breakthroughs will be found in our lifetime.

                  Also, I don't want to mislead you. I do still struggle with my health. My energy can often be poor and my gallbladder is shot from years of taking steroids (20-70 mg prednisone a day for 2 years) so I am always looking for ways to improve. But - there is NO comparison to before. I used to think about killing myself every single day to get away from the pain. It was horrible and present every minute. Even when I slept I would dream about people holding me down and hammering spikes in to my joints and wake up screaming. It could sometimes take 40 minutes just to get out of bed (helpful tip - put a heating blanket underneath your sheets. When you first wake up turn on the heat and let it help loosen your joints for 20 minutes before trying to move). So even though I'm not "healthy" I am now in place where I can go hiking at the ocean, sleep through the night without pain, and play with my nephews.

                  My point is - no matter what - don't give up!!!
                  Using low lectin/nightshade free primal to control autoimmune arthritis. (And lost 50 lbs along the way )

                  http://www.krispin.com/lectin.html

                  Comment


                  • #10
                    Hi, Sundoggy, nice to meet you. I'm dealing with MS. I'm not sure what the autoimmune protocol is, but I went Primal on March 14 of this year. So just 7 weeks into it, I've lost 8 lbs (I needed to - 15 to go...). I eliminated dairy, as well as all grains. I must say, my fatigue has improved, and my walking distance has improved slightly, as well.

                    I'm taking Tysabri (Natalizumab) to keep my incidence of flares down (I haven't had one in 2 1/2 years), but my disability has been slowly, insidiously increasing. I also take Acetyl L-Carnitine, 1000 mg, 2x/day. AL-C gives our mitochondria something else to chew on besides glucose or fructose. Eating "Primal" helps or mitochondria, too. For spasticity and spasms, I take Baclofen, and then at night I also take 5 mg of Valium, alternating every other night with Cannabis.

                    I'm looking forward to increased energy, and that's already happening. My digestion has never been better.
                    Taking this path with you...

                    Comment


                    • #11
                      Jammies - thank you so so so much. For some reason this last post of yours just made me want to cry! I think it's having someone understand so well. Like you, I think the answer for me may be a combination of diet and traditional drugs. Of course would like to be off those drugs permanently -- but right now it is more important to be able to walk, and hopefully return to the workforce (I'm now applying for a part time job after a year on disability).

                      I thought Rituxan was the end of the line and my last drug to try. I don't know about the IL-1 and IL-6 inhibitors so I will research them ASAP. Interestingly, I had a 10 day period of almost near remission a couple of months ago, from both RA and neuropathy. It was amazing, for the first time since being sick I had real relief. We don't know if it was caused by the Rituxan (it was right at the point where the first Rituxan dose should have kicked in) or the fact that I was on bedrest from a fractured sacrum (caused by prednisone use!). But just having those ten days gave me hope. 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.

                      You have given me great inspiration Jammies. Believe me, I would be thrilled to return to the kind of health you have, even if it's not perfect. Any improvement will be so welcome! And luckily, I do love this primal way of eating.

                      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!!!
                      : )

                      Comment


                      • #12
                        Originally posted by Guitar_grrrl View Post
                        Hi, Sundoggy, nice to meet you. I'm dealing with MS. I'm not sure what the autoimmune protocol is, but I went Primal on March 14 of this year. So just 7 weeks into it, I've lost 8 lbs (I needed to - 15 to go...). I eliminated dairy, as well as all grains. I must say, my fatigue has improved, and my walking distance has improved slightly, as well.

                        I'm taking Tysabri (Natalizumab) to keep my incidence of flares down (I haven't had one in 2 1/2 years), but my disability has been slowly, insidiously increasing. I also take Acetyl L-Carnitine, 1000 mg, 2x/day. AL-C gives our mitochondria something else to chew on besides glucose or fructose. Eating "Primal" helps or mitochondria, too. For spasticity and spasms, I take Baclofen, and then at night I also take 5 mg of Valium, alternating every other night with Cannabis.

                        I'm looking forward to increased energy, and that's already happening. My digestion has never been better.
                        Taking this path with you...
                        Dear Guitar Grrl,

                        Good to hear about your experience so far!

                        If you haven't seen this incredible video about MS and a primal diet, check it out, Dr. Whals who has MS herself. But it sounds like you already understant the whole mitochondria thing.

                        The Autoimmune Protocol can be found at Robb Wolf's site, but I'll put it for you here:

                        Paleo For Autoimmunity

                        Emerging research has made clear the link between Neolithic foods (grains, legumes and dairy) and autoimmune diseases such as Lupus, Rheumatoid Arthritis, Multiple Sclerosis and a host of other less well know conditions. Many people have found significant improvements in autoimmune disease by eliminating the Neolithic foods and building a diet around nutritious Paleo options. If you suffer from an autoimmune disease we highly recommend you start a Paleo diet and let us know what your results are. To give your body its best chance to heal we recommend that you initially limit the following foods:

                        Eggs
                        Tomatoes & eggplants
                        Peppers including bell peppers and hot peppers
                        Spices such as curries, paprika, and chili powder.
                        Some of these otherwise Paleo-friendly foods have been shown to be problematic in individuals with autoimmune issues. We recommend you fully remove not only these foods but also all Neolithic foods (grains, breads, potatoes, beans and dairy) for at least a month to see if they pose a problem for you.

                        Good luck with your health and I look forward to updates!

                        Comment


                        • #13
                          Originally posted by Guitar_grrrl View Post
                          I also take Acetyl L-Carnitine, 1000 mg, 2x/day. AL-C gives our mitochondria something
                          Yes- Acetyl-L-Carnitine combined with alpha-lipoic acid - that is supposed to be good for energy and neuropathy....

                          Thanks guitar grrl - i couldn't think of it!!
                          Using low lectin/nightshade free primal to control autoimmune arthritis. (And lost 50 lbs along the way )

                          http://www.krispin.com/lectin.html

                          Comment


                          • #14
                            Does anyone have a list of good foods? I have MS too, and notice when I go "full primal" some of my symptoms are worse, but if I'm eating SADish, I'm soooo fatigued and short tempered. It's important to note that my "full Primal" would include a bunch of eggs with cheese and onions, peppers, and mushrooms for breakfast, a salad (with peppers and eggs) for lunch, and usually something else for supper, but tomatoes and red pepper were usually involved. Snacks are nuts, cheese, or hardboiled eggs. I don't know what to eat without nightshades, eggs, nuts, or dairy....
                            I really need to get my weight under control, and since I don't take DMDs, I want to do everything I can to keep the MS from progressing. (And yes, I've seen the Wahls videos several times, and while it is somewhat primal, I don't know how I can choke down all those greens. And, it looks really...um, not fun? I know that sounds childish, but relegating myself to kale and low fat meats simply will not do it for me.)

                            Comment


                            • #15
                              Ooopps.... I was just about to post the Wahls video for you- but I see that is not necessary
                              (You could try adding in some green smoothies to get some of her veggie requirement in, but I have yet to meet her requirement for veggies either)


                              There is a link in my signature on lectins. Basically the autoimmune protocol is a primal diet but you don't eat:

                              eggs
                              dairy
                              nightshades (tomato, peppers, eggplants, tomatillo, potatoes)
                              nuts
                              (Some people cut out coffee and chocolate right away as well)

                              If you feel better then you can slowly add in one food type at a time to see if they are safe for you or not.

                              Before trying this, I often found I felt worse when I ate "healthy". I am now convinced that was because I would always eat so many nightshades when I ate a healthy diet.

                              No need to go low fat. In fact, a diet very high in saturated fat is best for me as far as inflammation. Don't forget to eat your offal too - tons of nutrients that you WILL miss out on if you eat only muscle meat, fruits, and veggies.

                              Good luck!!
                              Using low lectin/nightshade free primal to control autoimmune arthritis. (And lost 50 lbs along the way )

                              http://www.krispin.com/lectin.html

                              Comment

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