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Please talk to me about autoimmune flares

by 1962 · May 25, 2012 at 10:25 PM

I have vitiligo. I've had it for about four years, and it gets a little worse each year. What's on my body I can live with , but this year, it's really bad on my face, and it's really, really getting me down. Generally, I start each summer with a few little patches that repigment. This year, it's horrible. I think I was in the middle of some vit activity when I started paleo, about 3-4 months ago, just couldn't tell because I had no tan. Now it's just getting worse and worse. My face actually is repigmenting, because I'm using protopic and getting sunlight, but other places are going fast.

I was overdoing the dairy when I first started paleo (ish), have been egg/nightshade/grain/dairy free for about five weeks. Vitamin D is low, has been for a long time. (I've been bad about keeping up with supplements.) Right now, I'm waiting for the results of various lab tests, including celiac, thyroid, ANA, folic methylation, etc.

I've read all the posts on autoimmunity here, including some about flares when first starting out, and referencing Lutz's Life Without Bread, which I JUST read now. He wasn't as clear as I was hoping about flares and how long they last. So I was wondering if anyone in this wonderful community would be so kind as to pipe up about:

  1. Their experiences with flares and how long they lasted before seeing an improvement. I know that this isn't one size fits all, but, well, just some REASSURANCE that I'm doing the right thing would be great.
  2. Macronutrient breakdowns, because I am so confused about what I've read. Some say VLC, some say higher carbs and lower protein. Again, I know it's not one size fits all, but general experience would be great. I don't track food every day anymore because it makes me crazy, but I'm in the 10-20 percent carb range and am wondering if I should limit protein too, a la the optimal diet.

THANK YOU!!

EDIT Have gotten all my labwork back, and they're all perfect. Except for one little thing -- I have a polymorphism for the MTHFR gene, which means I don't methylate folate acid properly. Some gets through, but not all. This actually could be the answer to a lot of my problems, and I wanted to update this in case anyone else is reading this.

Apparently, MTHFR variants are VERY VERY common--some say up to 44 percent of the population is heterozygous (that's what I am) for this. So folate isn't methylated, and among other things, that means homocysteine levels can build up. (Homocysteine is byproduct of methione that is recycled back to methione--and some other stuff--by folate byproducts. Sorry, am not chemist.)

I am finding this last point to be incredibly interesting, because I have gotten worse since going paleo. And it actually makes SENSE now, given this diagnosis. I've been eating way more protein. Methione comes from protein. Therefore, I could possibly have elevated homocysteine levels, which is making the vit worse (and there's some other stuff going on too).

And if this is so common, then it might explain why so many people do better on limited protein, too.

WOW.

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4753 · June 07, 2011 at 06:53 AM

You're on the right path! stay on it. While it will take time, your immune system will modulate. Make sufficient levels of vitamin D a priority. A no matter what priority.

The lab tests actually offer little. What will you differently based on the results? You're already gluten free so celiac (TTG etc) won't be valid.

One of the key things you need it simply time. Time for nutrients (including D) to nourish your immune system so it can start functioning properly again.

I've resolved multiple autoimmune disorders (psoriasis, celiac, raynauds, as well as markers for lupus) with a paleo/primal diet, it just took some tweaking and time. Don't underestimate the power of bone broth/stock and organ meats - both are required for various nutrients that you cannot get elsewhere in sufficient concentration.

Paul Jaminet makes a convincing case for limiting protein to around 200 cals per day (50g protein) - some do great with that recommendation, some appear to need more. One reason to consider it is the inflammatory potential of methionine and tryptophan as well as the fact that they increase the need for glycine (found in bones, skin and connective tissue - ie broth). One way to increase protein without increasing methionine and tryptophan is.....bone broth and good amounts of it.

With regards to carb level, you'll just have to experiment. Personally, I find it most beneficial to vary carbs, vary calories and vary intake in general.

Fasting: some weeks I don't fast, some weeks I fast every other day (rare), some weeks I do 1-2 24 hour fasts from noon till noon.

Ketosis: sometimes I'm in ketosis, sometimes I'm not depending not only on carb intake but also depending on fat and protein intake - especially coconut oil intake.

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1771 · June 07, 2011 at 12:52 PM

I have a skin condition called (vulval) Lichen sclerosus. It's thought to be an autoimmune condition, although not conclusive yet it seems.

Since going paleo (not strict), it calmed down & the appearance of my vulva has become more normal (sorry if that's TMI boys!).

My flares seemed to be linked to postnatal hormones (I would flare when I ovulated - nightmare!!!), but seems to be responding significantly. Only time will tell if I can manage this autoimmune disease as I've only been aware of it (had symptoms) for just under two years.

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20 · May 25, 2012 at 10:25 PM

Zoomia, ive had vitiligo for over twenty years. All on my face.. I started UVA treatments and supplementing with 5 mg of frolic acid daily, along with inter muscular b12 shots once a week. I started regaining my pigment a month into treatment. Complete repigmentation within five months. I had to by a dermapal unit and continue to expose my face 2-3 times a week at 6 mins at a time. My doctor was so impressed with my results and couldn't understand how I repigmented so quick and so much. Other patients of his didn't have the same results. I now understand the reasons why. I started the blood type diet about 10 years ago and I'm an O which like Paleo encourages high quality protein and dairy and wheat free diet. I believe that has been the link to my success. I admit that I'm just now considering Paleo because of depression and narcolepsy. I have a tiny vitiligo spot starting on my arm, so I'll be getting on the autoimmune protocol ASAP. I have been cheating way to much and find the vitiligo on my face starts creeping up along with always being tired. I believe the folic acid and b12 were a link to the extent of my repigmenting, so I encourage you to do the same as you continue on your Paleo journey. My doctor prescribed me the folic acid which is five tiny pills I take daily. Remember, 5 MG. I give myself the b12 shots weekly. He also gave me a prescription for this. I am confident this will help you too. I'm also confident that going strictly Paleo along with bone broths will eventually balance it all out. Gotta get my leaky gut healed:)

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7709 · June 07, 2011 at 12:05 PM

Unfortunately no one can promise that this will work. I had a ~3 month crohn's flare when I first switched to a ZC/VLC diet, but that eventually calmed down and things got much better. But Crohn's could have a substantially different reaction to paleo than vitiligo - maybe vitiligo simply won't respond to dietary intervention.

It's impossible to say hypothetically without some sort of proposed mechanism whether or not you'll ever see relief. You're kind of on the edge of knowledge here. I wish you luck.

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721 · June 07, 2011 at 06:01 AM

May I suggest the auto-immune subset of the paleo diet if you are not on it already?

I experience flare ups (of a different kind though) with my acne but where inflammation is concerned we might be on the same boat. It takes time to figure out what your body is trying to tell you.. but I have noticed I get sore joints and then an acne breakout, which I believe I have correlated to when my omega 6 gets out of control.

I cant say with any authority, but 10-15 percent carbs should be fine and you may be able to stay in ketosis which is probably a good idea when trying to trouble shoot issues. Its not all about macronutrients though if those 20% carbs are starchy and insulin spiking you might be aggravating your condition abit.

That is my thoughts, Good luck !

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254 · September 19, 2011 at 11:47 AM

bearer of good news: I too have had vitiligo for over five years. 90% of the pigment on my face has gone. Recently however, I have started to see some re-pigmentation on my face. Very small patches across my face have started to come back over the last month or so. I still have a very long way to go but it is a positive small step in the right direction so do not give up hope.

I have been eating paleo probably around 80% of the time since around March this year. But have recently increased my intake of bone broth as well as supplementing with Vit D, Magnesium and omega 3 fish oils. I'm still experimenting.

I've been on medium carbs. I do eat potatoes as I find on very low carb I get dizziness. I still eat the odd chunk of 70% Chocolate and a few glasses of red wine each week as life is for living. The main thing I think is zero grains and as Katherine said, lots of bone broth (is it possible to have too much?).

In terms of protein, I eat meat every day but not at breakfast (blueberry's, apple and coconut oil) seafood/fish at lunch with lots of veg, garlic and butter. And then chicken or beef casseroles (with bone broth) in the evening with more veg (inc potato) and butter.

The spots seem to have come back on my cheeks which always catch the sun first. There seems to be a fine balance between not getting enough sun and then getting too much (which in the past has increased the de-pigmentation). I am going to try a narrowband UVB lamp too to try and accelerate the process now I know it is also healing from the inside (I tried this in the past an it didn't work but my diet was bad).

Interestingly earlier on this year I did think the vitilgo seemed to be getting worse at a quicker rate and I wondered if Paleo was the right thing. But then it seems to have slowed and then reversed in some areas (my right hand is showing some re-pigmentation too).

I'll keep experimenting and seeing what seems to increase the rate and let you know how things go. However we are all different so I can't say what will work for you.

I hope this helps. Good luck!

EDIT: also as another poster mentions. I have totally dropped nuts from my diet. For me they are not good.

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2439 · June 07, 2011 at 10:21 PM

I would also drop the nuts and seeds.

I know that it sounds like a lot but if you make food in batches and plan ahead its not too bad.

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1776 · June 07, 2011 at 06:36 AM

bearer of bad news: since its a little worse each year, that means your body is slowly losing the battle. hate to frame it that way but nature recycles. limited, hypo-allergenic diet, safe starches if it works for you (experiment) and lots of support - acupuncture, herbalism, nutraceuticals, meditation, lab tests, etc.

edit to talk about immune system: in a weird metaphorical sense, auto-immune conditions are the body trying to do what seems correct under unhealthy circumstances.

the terrain is messed up (leaky gut, or some genetic anomaly) and it confuses nature's natural system of recycling. theres a theory that we need more intelligent immune systems, an upgrade to the software, and the way to do that is continuous megadosing of medicinal mushrooms.

whether or not this is true in this day and age, with such multivaried attacks on our health, is unknown. i'm giving it a try, but it will probably take generations of experimenters to know for certain.

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