Paleo Diet and Paleolithic Diet Questions & Answers

Question

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As a diagnosed lupus, TMJ disorder, RA, thyroditis, celiac (all by in-hospital doctors) , I've tried about every variation of diet out there in hope to help my autoimmune condition. Paleo diet has put some of the most severe symptoms under control. Yet, my autoimmune condition is still on going and I still suffer daily. I still have "relapses" occasionally. To make matters worse, neurological symptoms are emerging recently.

I've tried strict Paleo with no starch, less strict paleo with starches, blueprint, robb's autoimmune protocol, Rosedale, specific carb diet. I realized I cannot fast or IF, because I literally can't walk straight on the street with serious head and vision spinning. For recent several weeks, I've been on ketogenic diet, which helped with my fatigue and headache. It also helped my gut issue somewhat. But it didn't get rid of muscle twitching, temple swelling, pins and needle sensation etc. (I'm still learning about ketogenic diet so I'm making a lot of mistake.. like eating too much protein.. )

So far, I felt better on eating strict 3 meals, no snack, paleo, but again, it does not help me enough for me to rely on it for any longer. The reason why I'm still on one of these paleo category diets- meal planning based on low carb, high fat is because it is really the only diet my body barely can process. I feel so sick cheating on a small potato or if I eat anything(including saturated fat) "a lot" at once. I can't eat anything a lot. even the "good" foods. I get dizzy, foggy brain, visible joint swelling, fluid retention etc. So, the issue is that, no matter what I tried, I haven't gotten better enough, far from the optimal level :(

I have several abnormal antibodies including thyroid related, gut related, ...(by repeated blood work)

In summary, my question is that long time Paleo diet helps my autoimmune condition somewhat, but not enough. What do I need to try/add/consider now??

I hope that there must be something that's going to make me to get better. It could be really anything that's not being addressed right now. It's just that I have no idea what it would be, at this point.

Any advice, suggestion or sharing your own experience with autoimmune condition are greatly appreciated.

edited Dec 30 2011 at 3:26

asked Dec 30 2011 at 2:47

Hanne
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Hanne, I sure wish I had some advice for you. However, I just want you to know that your food sensitivity is not just you -- the first symptom I get when I try to add vegetables back to my (usually) ZC diet is joint pain. Long before any weight gain. I hope you get some good answers to this. – Rose Dec 30 2011 at 3:02

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Hanne, here's what my usual day looks like: paleohacks.com/questions/41021/… – Rose Dec 30 2011 at 4:12

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Look into Cranialrelease.com. It's amazing work that can help with all of your symptoms. I am a practioner in Chandler AZ, not sure where you are. I treat people of all sorts of severities. Website will give you more information and if your interested there is a fina practioner button. Good luck, sarah – Sarsh Dec 30 2011 at 4:27

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Bio-Kult to improve your gut bacteria will almost certainly help. – Annie Dec 30 2011 at 15:02

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Hanne, I am praying for you to be completely healed. Someone at dirty carnivores posted that she had no joint pain after eliminating vegetables. PFW's blog about his experience w/ Crohns gave me the inspiration to get my carbs from Lactaid milk. The last few weeks, not eating veggies, and using the Lactaid for carbs, my joints are happier. My flexibility is better, have less pain. I also greatly restricted my tea drinking, which helped, as well. Am sending you all best thoughts. – PaleoGran Dec 30 2011 at 16:58

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cliff · Accepted Answer · 2011-12-30 14:05:38Z UTC

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My mom cured an autoimmune eye disease using a ray peat style protocol, she literally cured herself overnight by just eating some basic pro-thyroid foods and removing the anti-thyroid foods. She also uses progesterone and vit A(I think).

answered Dec 30 2011 at 14:05

cliff
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thanks much, cliff. I just researched briefly about ray peat protocol, it's quite interesting. Different from any other diets I've tried. – Hanne Dec 31 2011 at 2:14

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cliff-did your mom gain weight by doing ray peat?? last two days on RP, I gained 6 pounds! outrageous! I'm already heavier than "normal" weight by chart, which makes the 6 pounds in 2 days obviously problematic. – Hanne Jan 2 2012 at 19:37

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I usually drink about a gallon of milk(I drink whole but ray says this should be 1% milk if you don't want to gain weight as the amount of milk he recommends is usually fattening if you drink whole), 10-16 cups of juice(usually a mixture of pulp free not from concentrate orange and pineapple), 1-2 potatoes with butter, some flourless brownies(cocoa powder, eggs, butter, sugar), maybe some cheese and other random items. I eat like 4-5 times a day and do about a tsp of salt each meal, I also take ~1g of aspirin and 40-60k iu vit A(I take so much vit A because I have a very high metabolism... – cliff Jan 3 2012 at 13:23

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..stick to liver 2-4 times a month or smaller amounts like 5000iu if you decide to experiment with that) – cliff Jan 3 2012 at 13:24

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also take 5mg vit k2 every 2-3 days – cliff Jan 3 2012 at 13:25

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Fraddit · Answer 2 · 2011-12-30 19:48:21Z UTC

I would switch to grass fed beef instead of turkey. Better 3/6 ratio. And I'd really recommend trying GAPS. That or Chris Kresser just outlined the gut healing protocol he uses for autoimmune in one of his most recent podcasts: http://chriskresser.com/naturally-get-rid-of-acne-by-fixing-your-gut The focus of the episode is curing acne but healing the gut is healing the gut. Leaky gut is a huge problem with autoimmune.

balor123 · Answer 3 · 2012-01-03 23:34:10Z UTC

Eliminate the dairy and nuts completely. Same for gluten - not even tiny amounts. Increase the amount of fruits and veggies - 6 cups a day. Select crucifers and leafy greens with only 1 cup low glycemic choices. No sprouted plants of course and get vit d from supplements since you have lupus. Nuts should be avoided. Stick with it strictly dor at least one year. Those antibodies dont disappear overnight. Non paleo options include immunomodulators. Sesame seeds and hemp (dranobil if available near you) are reported to have this effect. You might also try LDN. Large quantities of green tea extracts seem to cure just about everything these days but you risk liver damage. I also recall hearing recently about a drug trial starting for a cure but dont recall where. Subscribe to pubmed feeds on these diseases to get an idea of what else.

Becky · Answer 4 · 2011-12-30 03:14:13Z UTC

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Have you been tested for heavy metal poisoning and do you know the status of your adrenals? I was very sick, not quite as bad as you and am recovering well with chelation therapy to remove the heavy metals. They can shut down your body. Weak adrenals result in multiple food sensitivities and blood sugar imbalances and there is a lot you can do to help your adrenals recover.

answered Dec 30 2011 at 3:14

Becky
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The best thing to do to find out about your adrenals is to take a saliva test. You should collect your saliva 4xday to get an idea of what your cortisol is doing throughout the day. You shouldn't supplement without doing this first because you need to know what your baseline is, your choice of supplements will vary based on if you have low or high cortisol. Mine was low in the AM and high in the PM. For adrenal support, I took ashwaghanda w/ breakfast and lunch, cod liver oil, solid licorice extract 3x throughout the morning to mimic a steady supply of cortisol. (cont) – Becky Dec 30 2011 at 3:27

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and I made sure to eat every 2 hours b/c with weak adrenals your body can't maintain steady blood sugar. Also take 4K mg vitamin c with bioflavenoids to help cortisol production. Saturated fat like lard, ghee, and tallow is good to help your body create cortisol and B complex helps to support your adrenals also. Lifestyle changes: stop contact w/ toxic people and rest when you're tired, limited exercise depending on how you feel, it can deplete adrenals. I do gentle yoga and walking. I also use bioidentical progesterone to support my adrenals. – Becky Dec 30 2011 at 3:32

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Chelation therapy is taking supplements to attach to the heavy metals in your body and excrete them. Your adrenals need to be in fair shape to tolerate this well. I have gotten soooo much better from doing this. I had high levels of mercury, cadmium, and lead. I finally have my life back thanks to the naturopathic doctor who created this treatment plan. Hang in there, as long as you keep seeking answers, you WILL get better! – Becky Dec 30 2011 at 3:34

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Because my adrenals were so weak, I had to start slowly and did humivirate, cilantrogen, sodium alginate, and then DMSA. First three were daily and DMSA is 200 mg every three days. My adrenals got stronger about halfway through and I stopped taking the licorice. I am also almost off of my thyroid medication. – Becky Dec 30 2011 at 3:56

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How were you exposed to cadmium? My dentist replaced my amalgams with no precautions and my mother had a mouthful of amalgams. I was raised a vegetarian which I think left me with nutritional deficiencies that made me more susceptible to heavy metal poisoning. Now a full fledged carnivore and have never felt better!! – Becky Dec 30 2011 at 3:58

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Fonda · Answer 5 · 2011-12-30 13:32:07Z UTC

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look into the leptin reset by Jack Kruse. It goes right along with Paleo

answered Dec 30 2011 at 13:32

Fonda
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Eugenia · Answer 6 · 2011-12-30 03:01:33Z UTC

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You need to give us more info about what exactly you eat. For example, do you use coconut oil to cook? Do you use fermented foods?

answered Dec 30 2011 at 3:01

Eugenia
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I eat coconut oil occasionally. my major fat is from olive oil, ghee, butter(the only dairy I eat). I used to eat heavy whipped cream a lot too but not anymore. I also eat fermented cabbage(lacto fermented) regularly once a week. Is daily fermented cabbage going to help? right now, I'm moved on to the ketogenic diet from the autoimmune protocol: Today, I ate 1/3 pound ground turkey cooked in butter, 3 strips turkey bacon, onion cooked in butter, 1 cups of salad greens+ olive oil, cucumbers,1 egg in butter, 1/2 pound salmon broiled with lemon and salt. 2 of the asparagus with butter, tea. – Hanne Dec 30 2011 at 3:15

the other day I had something like a salmon steak, celery, cauliflowers in ghee, 3 egg omelet with basil, scallion, broiled turkey breast, turkey bacon – Hanne Dec 30 2011 at 3:17

you didnt mention any medications that you surely must be taking. – coprophagous Dec 30 2011 at 5:27

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ghee instead of butter would completely eliminate casein, probably worth doing – NoGlutenEver Jan 1 2012 at 2:47

the brand of turkey bacon, please? – NoGlutenEver Jan 1 2012 at 2:47

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Kim · Answer 7 · 2011-12-30 03:59:30Z UTC

I've been taking an ionic magnesium supplement and have improved quite a lot. Here's a link to an article about magnesium and autoimmune diseases: http://www.nutritionalmagnesium.org/articles/magnesium-deficiency/180-magnesium-deficiency-in-autoimmune-disease.html

Dragonfly · Answer 8 · 2011-12-30 04:44:32Z UTC

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What's your Vitamin D level?

You need to get it up around 80 ng/ml or slightly higher to help with autoimmune issues.

answered Dec 30 2011 at 4:44

Dragonfly
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Stop using the prescription and take 5-10k of d3 instead. d2 is crap. Take it with some k2 (mk-4 version) to help. – Aughra Dec 30 2011 at 5:39

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Agreed with Ashley! Make sure it's oil-based. If you can deal with a bit of fish oil, Carlsons Solar D Gems are the best, IMO. – Dragonfly Dec 30 2011 at 14:54

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Also make sure you are taking 200-600 mg Magnesium in whatever form you tolerate. You absolutely need it with those higher D levels. – Dragonfly Dec 30 2011 at 14:54

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I needed 8,000 IUs per day to get me up to 91 ng/ml. (I go for the higher number due to my asthma--which is completely gone at this level of D.) – Dragonfly Dec 30 2011 at 14:55

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Plenty of Vitamin K2 and Vitamin A are need along with the Vitamin D. – Cody Dec 30 2011 at 19:55

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Tracy · Answer 9 · 2011-12-30 16:24:08Z UTC

Check out The Wahls Foundation (on Facebook). Terry Wahls, MD is an amazing physician who reversed her advanced multiple sclerosis with diet. You can find details about her recommendations on the best diet for AI.
She is now doing serious medical research on this topic.

Namby Pamby · Answer 10 · 2011-12-30 20:04:46Z UTC

The other missing piece might be acid-base imbalance. Like I posted elsewhere, you might wanna look into Dr. Richard Ash's podcast archive, who practices in NY and is an alternative/integrative practitioner (naturopath) and MD. His specialty is IBD (including Crohn's, UC), osteoporosis, and food allergies, and he in fact wrote a book on IBS a while ago. Among his recommendations are keeping the acid-base balance by eating 80% of your food from alkaline sources and checking your body's pH (urine and saliva). This is fairly controversial.

However, I can tell you I've been able to keep my gout under control using his method: I drink a glass of water with a half tsp of dissolved baking soda morning and night. This keeps me consistently alkaline at a pH of 7. Also, four weeks into this protocol, my FBG fell to the low 80s consistently and my autoimmune symptoms have been reduced. I'm not sure if that's entirely due to keeping my body alkaline but so far it's working and I'm watching things closely.

I'd go to his archived podcasts which present very useful information from a clinician's perspective. Most people who call in suffer from autoimmune diseases like lupus, MS, IBD, RA, etc.

NoGlutenEver · Answer 11 · 2012-01-01 02:52:57Z UTC

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I thought that it could take 2 years to get an autoimmune fire to burn down. But where did I read that? Robb Wolf?

answered Jan 1 2012 at 2:52

NoGlutenEver
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Mica · Answer 12 · 2011-12-30 05:20:03Z UTC

I don't have answers/advice (it seems you got some already so that's good), but I wanted to tell you you aren't alone. I have multiple immune issues that plague me constantly and have responded somewhat but not completely to a paleo diet. However I stay with paleo because I know when I was off of it, I was a lot worse. It's a lot of effort and it's restrictive, but I'd be in such worse shape off it. I think the next step for me is adrenal testing, and probably more diet tweaks. I hope you find some relief.

Namby Pamby · Answer 13 · 2011-12-30 05:28:06Z UTC

Like Eugenia says, you need to provide more details on what your diet is like right now. U say u've tried Robb Wolf's AI protocol. How long were you on it. Ur eating butter now so you're not completely dairy-free. You're a celiac, so ru gluten-free? In short, are you gluten-/dairy-/nightshade-/nut-/egg- and soy-free?

Secondly, were you actually diagnosed with all of the above cluster of autoimmune diseases by autoimmune markers or by symptoms? For example, Hashimoto's thyroiditis via TPO or TG Ab. RA via CCP. SLE via Double Strand. You also claim GI-related distress: do you have IBS-related (or god forbid IBD-related) symptoms? To treat all those diseases, are you currently seeing a rheumy, neuro, endo and a GI? At minimum, you should be seeing a rheumatologist and endocrinologist.

If so, what prescription or OTC medication and supplements are you taking? There is a ton that will be offered to you, if you're confirmed for all those. You have a lot going on and there is simply not enough info to go by.

Glither · Answer 14 · 2011-12-30 08:55:36Z UTC

Your problems are more complex than most. For you, I think it would be worthwhile to find a really excellent practitioner in your area who understands paleo and who can take some of the guesswork out of it.

Whatever you do, I hope you have success with it.

Alan Schachter · Answer 15 · 2012-06-16 01:12:59Z UTC

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Along with paleo, add LDN, bring vitamin D levels to 80, add curcumin/bcm95, and boswellia/5loxin.

answered Jun 16 2012 at 1:12

Alan Schachter
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Henry S · Answer 16 · 2011-12-30 17:52:03Z UTC

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A much simple answer for you, go raw paleo.

answered Dec 30 2011 at 17:52

Henry S
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Raw paleo? Actually, raw veggies may make her condition worse!!! If you mean raw meat? Maybe. – Cody Dec 30 2011 at 19:57

Also, raw cruciferous veggies may not be easy to digest if you have IBD or IBS. That's according to Constantyn of GutSense. – Namby Pamby Dec 30 2011 at 20:00

she doesn't say that raw veggies made her worse. You gotta go by empirical evidence, not what you read. – Henry S Dec 30 2011 at 22:29

Seriously, what should I do for my autoimmune condition??

16 Answers