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What to do when Paleo doesn't work?

Answered on April 26, 2014
Created April 23, 2014 at 11:54 PM

I have been on a gluten-free diet for four years, grain free/high fat/paleo for two. I eat my offal. And loads of good fats. I avoid nightshades. I eat almost no sugar or fructose (can't tolerate it). I do eat chocolate (100%) and eggs (from our pastured, wheat/corn/soy-free chickens), but have eliminated both for many months at a time in the past, but never experienced any improvement when I avoid them or worsening of symptoms when I added them back. I am 31. I have had Myalgic Encephalomyelitis since I was 28, and I am still largely bedridden.

I am thrilled for Terry Wahls and for a great many people who have eliminated gluten or otherwise changed their diets and greatly improved/reversed their autoimmune conditions. I have never encountered anyone online with Myalgic Encephalomyelitis (note: which is NOT chronic fatigue or adrenal fatigue) who has been able to effect deep healing/remission through diet alone. That said, if I were not on this diet, I know I would be suffering from neuropathic pain and an even greater level of cognitive dysfunction and disability (aphasia, ataxia, numbness, etc.). Which isn't saying much as most days I can't even sit in a wheelchair.

Does anyone with experience grappling with a severe chronic illness (ME, MS, Lupus, etc.) have any advice about what to do when you feel like you've done as much as you can do with a Paleo diet?

I used to be able to achieve near-remission by eating nothing (water-only fasting) or bone broth alone, but think I am now so malnourished, I am no longer able to swing that. Clearly, if I don't eat, I feel better. So the question is, what am I still eating that is bothering me? Or is it just the act of eating? (I have tried GAPS intro/SCD etc. multiple times and it's just not helping anymore).

My diet: all grassfed meats + fats + low-glycemic veggies in a rainbow of colors. Water. Coconut milk plus blueberries/blackberries for a treat (the only fruit I can tolerate). I drink black tea, and am wondering if that's something I should also consider giving up.

Recovering, deeply penitent vegan (I fell in love with a boy) and former stress-o-holic

170c911843a4fec1a416e8c914d3297e

(0)

on April 24, 2014
at 11:20 PM

Janknitz, this was a stupid, insensitive comment.

Edc8e857b8e5c541db0200a8076d6b22

(0)

on April 24, 2014
at 03:09 PM

"you want to reap benefits you've got to work around the difficulties and learn and do the plan instead of finding reasons why you can't do it." – You are so right! Clearly I just haven't been motivated enough.

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13 Answers

0
5f2b8e0a671b7eaae8a6bd97f0ded166

(120)

on April 26, 2014
at 01:28 AM

I do not know anything about ME. But, mainstream physicians often fail to explain the

root cause of chronic disease. Ray Peat, Ph.D cured many MS patient just by

fixing their thyroid . He thinks many of these newly defined diseases are result of low thyroid

function. You can ask your doctor for a full thyroid panel ( TSH,T4,T3), total cholesterol

( high cholesterol usually means low thyroid function) and other hormones

like estrogen, progesterone, cortisol. prolactin, LH,FSH etc.

Low carb diet lowers thyroid hormone production, a moderate carb paleo

diet is more supportive of healthy thyroid.

0
089dd41b18fbb95ebb5347cded708d98

(5635)

on April 25, 2014
at 11:47 PM

are you on medications for your ME as well or are you just trying with diet?? what treatments are there for your condition (i'm not familiar with it). i have an autoimmune condition as well but there is NO WAY IN HELL i'd be alive if i was trying to manage my disease with just the paleo diet. the medications have saved my life numerous times but i still follow the paleo diet anyway because my nutritional numbers have improved.

0
C461569a2d8401a15837a53c9c32b25e

on April 25, 2014
at 02:50 AM

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0
5b9a25a1a676397a25579dfad59e1d7b

(2318)

on April 25, 2014
at 02:01 AM

As you stated, I know nothing about your diet but you did mention that you seem to do better with fasting/bone broth. Have you tried doing green juices packed with as much fresh veg as possible? If you started with the juice, sans the fibre, maybe you could absorb the nutrients better. You could also try to incorporate fats from avocados or coconut oil into the juices, along with a few tablespoons of some grass fed beef gelatin. Perhaps your body can't handle all the fibre and the juices could provide some nutrition without the fibre getting in the way. Maybe that is causing your gut some trouble, especially if you can't be active...it's worth a try. I find that I have trouble digesting veggies and fats if I'm sedentary, which it seems like you are not able to help right now. I would also recommend trying to have things that stimulate digestion, such as daikon and fennel/ginger/peppermint tea with or after your meals. Are you taking a good quality probiotic? I would avoid anything raw and cook the veggies way down so your body doesn't have to work hard to break down the foods. Bone broth, green juices, cooked meat--simple is best in my experience. I hope you find your answers and begin your recovery soon.

0
5890e9f25cd201f3915ad8b9d3bbad71

on April 25, 2014
at 12:23 AM

I know some May not agree with my answer but I want to just put this out there.

I know what it is like to be extremely sick and almost hopeless because it seems like you'll never get better. The days of feeling good we're almost dreamlike. It almost seemed like "was I really like that at one point?" You have a good diet. Make sure you're eating enough, especially if you suspect you are malnourished.

You should probably find a doctor and get micronutrient testing. This can be done via blood analysis or hair testing.

You may also want to look beyond diet. Yes, diet is a component of health, but do not look into it so much that you miss the bigger picture. You are a complex organism constantly responding to internal and external stimuli in ways we may never understand. In some part of this process there is an imbalance, hence your sickness. Do you have gut dysbiosis? Are there any underlying diseases or conditions you may not be aware of? Is the environment you're in supporting you? You may want to check for mold exposure, chemical exposure, or look into other thing that may be stressing your body out. Do you live by large electrical structures? Is your water fluoridated? Some things may not bother 99% of people but they may contribute to your illness.

Also, how much research have you been doing on your condition and diet? It sounds like quite a bit. This may sound a bit odd, but one of the things that helped me the most was getting away from my illness. Know that you are not your disease and your natural state is health. Start doing things you enjoy like reading,ogetting fresh air and sunlight, painting, playing games, etc. even if you can't do a lot at first. Remember to smile and laugh everyday. One of the things that helped me the most was reading the bible. I know not everyone is religious, but I grew up with it and it brings me a lot of hope and comfort. It's so nice to read about Jesus healing everyone and God's love.

Are you in contact with your family and friends? Try hanging out with someone if you can.

Mainly, I want to tell you to stay strong and positive and don't obsess or get caught up in your disease. It's so hard not to, but just keep trying. The down days will pass. You'll find what you need eventually if you earnestly search for it.

0
170c911843a4fec1a416e8c914d3297e

on April 24, 2014
at 11:31 PM

Hi there,

First off, your diet is perfect. Great job. I don't suffer from any of those diseases but perhaps you might find something to think about from my personal experience. Like you, I followed a good paleo diet that eliminated intolerances but was still suffering from minor issues. After some suggestions from peers that diet alone would not meet my nutrient requirements, I gave into supplements. It seems my body has some trouble properly absorbing some minerals because, despite a rich diet, a daily dose of supplemental magnesium is almost life changing for me.

0
Cb9a270955e2c277a02c4a4b5dad10b5

(10989)

on April 24, 2014
at 04:56 PM

Hey, good afternoon eve, I see that you are bedridden and that diet alone isn't helping you feel better. Might I suggest more physical activity? Now before you remind me that you're bedridden and that you can't exercise, please hear me out.

Global metabolic fitness is a combination of quality and quantity of exercise. Let us define exercise as muscular contractions. So when I say that perhaps exercise could help you I am simply talking about a high quantity of muscular contractions in your case. This isn't cardio and this isn't weight lifting, though you can do either one of those things if you have the energy.

I want you to simply contract your leg, arm and core muscles by either pushing or pulling them. The beautiful thing about this is that you can do it in bed, in a wheelchair, in a desk chair, laying down or standing up. You can do it anywhere and at any fitness level. Is anyone ever too tired to clench their fist, push their feet or push their arms onto their lap? I don't want you to use all your energy, I want you to do it at an intensity that you can sustain all day.

Exercise helps with endorphins among other things. Just the fact that you are admittedly bed ridden is really really bad. If you are going to be physically inactive regularly then you should at least get some of the metabolic fitness benefits of exercising from your bed. Before you make an excuse for why you can't do this, take two seconds and think of the fact that you're about to make an excuse to an online stranger about why you are so sick that you can't even clench your fist for 30 minutes a day. Please don't make that excuse.

That being said, I'm not a doctor or a physical trainer, I'm just giving you novel advice, take it at your own risk and consult a doctor first if you think you can't handle it. Best wishes, Stephen.

0
Edc8e857b8e5c541db0200a8076d6b22

on April 24, 2014
at 04:40 PM

Look, I appreciate you taking the time to respond, but you know nothing about me, my illness, my disabilities, or frankly, my diet. To conjecture that I am "halfway there" (again, you have no idea where I am or what I am eating) and that "I can do it" if I just "stop making excuses" is offensive to anyone who has ever struggled with a severe, complex disease. I've heard of many MS turn around stories and ZERO ME stories with respect to diet alone, so clearly something is different. Diet may not be enough to get a handle on raging viral/microbial infection, and certainly no amount of micronutrients in whole foods is going to matter if you're not digesting food properly or have severe gut dysbiosis. This is why so many patients seem to need/do well with IVs, liquid vitamins, etc. Not everyone can digest kale. I know that I am extremely malnourished, and it's not because of what I do or don't eat, but because my body is incapable for whatever reason of extracting nutrients from food.

0
3491e51730101b18724dc57c86601173

(8395)

on April 24, 2014
at 02:36 PM

I think it is important to read her book, and really there are options. You can read it on the computer as an ebook or audiobook, your local library surely has a free program to provide audio books in some format to persons with disabilities. If you can access this forum and read about her you should be able to read her book in some form. She's given a series of great interviews in the last month, her website has a lot, but the details in the book are really important.

Truly, it sounds like you're more than halfway there, diet wise. I think you CAN do it.

Everyone else has limited availability of a variety of fresh organic veggies in winter, too. She addresses all in the book, including food sensitivities, nightshades, etc. The key here, I think, is that if you want to reap benefits you've got to work around the difficulties and learn and do the plan instead of finding reasons why you can't do it. If it helps, it will very much be worth all the effort you put into it.

Edc8e857b8e5c541db0200a8076d6b22

(0)

on April 24, 2014
at 03:09 PM

"you want to reap benefits you've got to work around the difficulties and learn and do the plan instead of finding reasons why you can't do it." – You are so right! Clearly I just haven't been motivated enough.

170c911843a4fec1a416e8c914d3297e

(0)

on April 24, 2014
at 11:20 PM

Janknitz, this was a stupid, insensitive comment.

0
Edc8e857b8e5c541db0200a8076d6b22

on April 24, 2014
at 12:13 PM

My main challenge with veggies is that it can be difficult to find a diversity of organic vegetables during certain times of the year. We grow our own, but Dec–Apr is a long lull. Also, I can't really eat fruit or high glycemic veggies (e.g, sweet potatoes, beets) or nightshades. So that leaves out a lot of the colorful vegetables. I usually eat 2-3 servings of veggies per meal, mostly salad, cooked greens, broccoli, cauliflower, carrots, winter squash or summer squash, or homemade sauerkraut. And yes, my diet is ketogenic. But I will try adding even more veggies. I haven't read it – it's very difficult for me to read (have not read a book in two years).

0
Edc8e857b8e5c541db0200a8076d6b22

on April 24, 2014
at 12:08 PM

My main challenge with veggies is that it can be difficult to find a diversity of organic vegetables during certain times of the year. We grow our own, but Dec–Apr is a long lull. Also, I can't really eat fruit or high glycemic veggies (e.g, sweet potatoes, beets) or nightshades. So that leaves out a lot of the colorful vegetables. I usually eat 2-3 servings of veggies per meal, mostly salad, cooked greens, broccoli, cauliflower, carrots, winter squash or summer squash, or homemade sauerkraut. And yes, my diet is ketogenic. I haven't read it – it's very difficult for me to read (have not read a book in two years).

0
0e3c48b1ba2181042dfe479c16cd0fae

on April 24, 2014
at 02:47 AM

It's interesting that you've been "able to achieve near-remission by eating nothing (water-only fasting) or bone broth alone." That seems like a huge clue to your mystery. It suggests, among other things, that your ailment is indeed a primary function of diet, rather than your genetic heritage, environmental conditions, or other influence.
Your report doesn't make clear whether you've actually tried a strict elimination diet. Perhaps you can return to that near-remission fasting state, and begin the slow and meticulous process of adding back foods. Find the ONE item, after bone broth, that will not trigger your illness, for three days. (Perhaps begin with something high in fat, like coconut oil or egg yolks, to offer you calories while your diet is so limited.) If you can manage that one food, then find a second, and thereby gradually increase your options.

0
3491e51730101b18724dc57c86601173

(8395)

on April 24, 2014
at 02:08 AM

I'm not suffering from those diseases, and I don't have a knowledge base to offer you except that I read Dr. Wahl's book, cover to cover, and I'm fascinated by what she said.

So here is what I can offer. It sounds like you are doing a great Paleo diet. Dr. Wahls found that Paleo stopped the progression of her disease but it did not make it better. What she says in her book is that it's not just what you take OUT of your diet (gluten, toxins, immune triggers), but what you put IN. That's where her NINE cups of veggies comes in--three each from leafy greens, sulfurous veggies, and colorful fruit and veggies. These provide micronutrients that you may be missing. Offal, pastured meat and eggs, and natural fats are great, but not enough, according to her protocol. Are you doing the veggies? Is it worth trying?

It sounds hard. I tried it for one day (and used up the rest of the family's veggies for the week!) and it was challenging. Doing that every day would be daunting and expensive. But oh, so worth it if it made a positive difference in your condition.

I know a lot of people have heard about her and her new book, but if you haven't actually read it, I highly recommend it.

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