Autoimmune Citizen Science

Vivek-23

Vivek Mandan

Many people who improve their autoimmune symptoms want to share what they have learned, so others can benefit too.

Most people just start a blog.

Vivek Mandan is creating Autoimmune Citizen Science, a free site that will enable anyone with an autoimmune condition to track personalized data to support their healing process.

Vivek and his team are looking for testers for the beta launch of their site this Spring. I’ve already signed up. Anyone else who is interested in the potential of measurement as part of their recovery will want to scoot over to Autoimmune Citizen Science to sign up as a beta user, too.

Consider this post to be your personal invitation from Vivek!

This month, I interviewed Vivek, who is 24 and lives in Ohio, USA, to find out more about his experience with autoimmune disease and about his vision for how Autoimmune Citizen Science could change the way we research and treat complex chronic health conditions. Continue reading

Brain Fog (& what to do about it)

Brain FogHere’s a riddle:

Q: What do you do when your previously gentle and intelligent spouse starts to behave like a hostile toddler most of the time?

A: Do everything you can to reduce their brain fog!

When his brain fog was at its worst, Matthew reminded me a lot of a hostile toddler.

A hostile toddler with a driver’s license and credit cards.

It was not good!

The brain fog that accompanied the overall decline in his health was one of the scariest symptoms he experienced. And it is one of the many symptoms that has responded exceptionally well to the Autoimmune Protocol (AIP).

We first noticed marked improvement in Matthew’s cognitive function after seven months on the AIP.

And every month it has improved further.

After 27 months on the AIP, he’s almost all of the way back to his smart old self. Not completely. There’s still room for recovery, but his brain has mended remarkably well.

I am fascinated about brain fog, after having watched Matthew descend into its depths and come out the other side. Rory Linehan from the Paleo PI shares my interest, having been ‘there and back again’ with brain fog himself. So, he and and I conducted some research into the phenomenon.

In January 2016, we surveyed 18 people with first-hand experience with brain fog, all of whom were on a healing protocol diet, like the AIP.

This post contains the results of that research.

Our Brain Fog Research

We found it interesting that though they had no contact with each other while our research was being conducted, the way that people described their experience with brain fog was quite similar: Continue reading

Biohacking Update: 12 months on the Autoimmune Protocol

9 monthsDecember 23rd is our 1-year AIP-iversary!

We started our long-term Autoimmune Protocol one year ago today.

One year ago, Matthew was almost debilitated by a constellation of chronic health issues. Despite all the conventional, alternative & downright weird things we’d tried in our attempts to reverse his autoimmune conditions over the previous five years.

12 months later, we’re elated & discouraged about the progress he’s made.

Reversing Autoimmune

There’s no question Matthew is reversing his autoimmune condition on the AIP. Reversing, slowly. Not curing.

All the experts say the once a body is in autoimmune response, it’ll always be inclined that way.

You can’t cure autoimmune.

But you can reverse it’s effects. Slowly. Through the nutritional & lifestyle hacks known collectively as the Autoimmune Protocol.

Here’s a brief summary of Matthew’s progress after 12-months on the AIP:

symptoms_12 months

And me?

I’ve been on the AIP for 12 months, too. Most of that time a ketogenic version. As a person without an autoimmune condition, I’m loving the results, which I’ve documented in the posts biohacking for peak experience & biohacking for career leverage.

A false start & a rough beginning

We’ve tried a bunch of nutritional protocols in our attempts to heal. From the specific carbohydrate diet to raw veganism, they all left Matthew somewhere on the continuum between worse & unchanged.

2012~2014Our first Autoimmune Protocol (AIP) was for 30 days in the summer of 2013.

We thought 30 days might do it!

When it didn’t, Matthew was pretty dispirited. And fairly hostile about the AIP. I’d been paleo for a couple of years and had experienced the alleviation of all of my symptoms, so I continued to be paleo after our first AIP experiment.

But Matthew insisted that regular paleo made him worse, so he reverted to all his SAD-old ways.

Turns out he was right. A regular paleo diet is insufficient and inflammatory for many people with autoimmune conditions.

A few months after our first AIP, we noticed that Matthew’s psoriasis symptoms had improved.  We traced the remission back to our 30-day AIP.

At the same time, his pain symptoms were getting steadily worse, along with his dependence on narcotic painkillers, which interfered with his ability to function & interact with people.

Then, in October of 2013, he developed inexplicable, debilitating nausea.

After further research, we decided to try a long-term AIP. Or, in truth, I did the research and I decided.

Matthew grudgingly agreed. He was severely compromised at that time & would never have been able to do the protocol, or the research required to find out about it, on his own.

Now he can.

Though this was only a year & a bit ago, it was before Dr Sarah Ballantyne’s book The Paleo Approach was published.

At that time the primary sources of information on the AIP came from the experimental blogs of AIP pioneers who were treating their own autoimmune diseases through nutrition & lifestyle. This movement is still being led by people who are taking their health into their own hands, and taking the time to blog about it.

low-FODMAP & ketogenic variations

It was only a couple of weeks into our long-term AIP, during which time I continued to research obsessively, that Matthew decided to try a low-FODMAP variation. He’s experimented with going off of it during the last year & always ends up back on it. He does better.

Last Spring I decided to experiment with an AIP-compliant version of the Wahls Paleo Plus, the ketogenic version of the Wahls Protocol. I liked it so much I decided to stick with a ketogenic AIP and have continued to experiment with different levels of carbohydrates.

What next?

A long time ago we resolved that we’re just going to keep trying.

Most of the things we’ve tried haven’t worked. Some have made Matthew worse. Occasionally, we have a breakthrough.

The AIP is a breakthrough.

We’re going to stick with it & keep trying new nutritional & lifestyle hacks in our quest for health and well-being.

Previous Biohacking Updates

 

 

~Gyros: Greek Meatballs & Tzatziki (AIP & WahlsPaleo+)

Greek Meatballs & Tzatziki 3This recipe is my new favorite.

It doesn’t take long to make & it’s fancy. Fancy in a rustic-tapas Greek-taverna kind of way.

Matthew & I got the idea while flipping through magazines in a doctor’s waiting room one day last summer.

For me, one of the fun intellectual exercises on the Autoimmune Protocol (AIP) has been figuring out how to turn SAD foods into AIP-friendly recipes, like Hawai’ian Pizza, Pot Pie & Ice Cream Sandwiches.

But that kind of thinking was outside of Matthew’s ken until recently.

Brain Fogfog-2

Immune-Mediated Cognitive Dysfunction (colloquially known as ‘Brain Fog’) is a common symptom of autoimmune conditions. It affects a person’s capacity for executive processing, including retrieval of stored information, working memory and the the ability to pay attention.

Turns out, the ability to recreate a recipe for the AIP requires all of these:

  1. Retrieval: Remembering which foods are (& are not) AIP-legal;
  2. Working Memory: Keeping in mind the original recipe & mentally manipulating it’s components in various ways until it is AIP-compliant;
  3. Sustained attention: Maintaining focus while thinking it through, trying it out, evaluating the results, adjusting & trying again.

Given that he could barely executive process his way in & out of a grocery store a year ago, it’s significant that 7 months into the AIP, Matthew was able to actively re-create this recipe with me. The fact that we can puzzle out recipes together is an indication that his Immune-Mediated Cognitive Dysfunction is lifting.

OLYMPUS DIGITAL CAMERAJust for reference, when he’s not captive by Brain Fog, he’s one of the most intelligent people I’ve ever met~.

Since we came up with this recipe, we’ve collaborated on others, like Pontefract Cakes, Raspberry-Rosehip Gummies & Spanokapita Pie.

Seeing his capacities increase every month on the AIP reminds me how difficult it is for people who are severely disabled by autoimmune conditions to start and maintain a dietary protocol like this. 9 months in, Matthew is just now at the point where he could maintain the AIP on his own.

One of the things he wants to do with his slowly growing capacity is support people who face significant challenges, including wicked Brain Fog, to  initiate & maintain their own nutritional & lifestyle experiments.

The Recipe

If you’re avoiding FODMAPs (as Matthew does) check out the low-FODMAP variation of the Tzatziki.

This recipe is perfect for the Wahls Paleo Plus or any other ketogenic version of the AIP. Especially if you turn up the fat with sliced avocado, olives & a side of berry fudge.

I’ve included the recipes three ways. The separate Tzatziki & Greek Meatballs recipes that follow are exactly the same as the first version. I just added them in case you want to print/make them separately.

Gyros: Greek Meatballs & Tzatziki Lettuce Wraps (AIP & WahlsPaleo+)

 from petra8paleo

TzatzikiTzatziki

  • 1 tin (chilled) full-fat no-additive coconut milk
  • 1 cucumber
  • 2 tablespoons lemon juice
  • 1 tablespoon apple cider vinegar
  • 1 teaspoon salt
  • 1 teaspoon dill

Ensure the tin of coconut milk is chilled: refrigerate overnight or for a few hours (I just leave mine in the fridge).

Grate the cucumber into a bowl.

With your impeccably clean hands, squeeze the liquid out the grated cucumber and transfer into a second bowl. Pour the cucumber juice into a glass or a mason jar.

Repeat, squeezing the liquid again & transferring the cucumber back to the first bowl. Pour the liquid in the jar. If it’s a juicy cucumber, repeat the squeezing, transferring & pouring a third time.

Drink the cucumber water. Yum.

Whip the coconut cream: Open the chilled tin of full-fat coconut milk. Scoop the solid cream off the top & put it in a bowl with high sides. Whip with an electric mixer until smooth. Use the remaining coconut water in a smoothie or put it in your stock pot.

Add the whipped cream and remaining ingredients to the cucumber and mix thoroughly. Taste and adjust seasoning.

Put it in the fridge until the meatballs are ready.

You can make the Tzatziki a day ahead, just pour the coconut-laced liquid off before serving (Yes, I drink that, too).

Low-FODMAP variation

Coconut is low FODMAP in small quantities, but becomes higher at higher doses. Rather than skimp on Tzatziki, just shift the ratio. Grate an addition cucumber and double the lemon juice and apple cider vinegar. It’ll be more cucumber-iffic than a traditional Tzatziki, but you’ll be able to slather it on more lavishly.

Greek Meatballs

Greek Meatballs & Tzatziki

Yield: 90 mini meatballs

  • 2 lbs ground lamb
  • 1 bunch cilantro, chopped
  • 2 tablespoons capers
  • 2 teaspoons salt
  • 1  heaping tablespoon turmeric
  • 1 teaspoon cinnamon
  • 2 tablespoons dried mint (optional)
  • 3 tablespoons lard, tallow or coconut oil

Mix all the ingredients (except the fat) together with your hands.

Form into about 90 mini meatballs.

They’re mini because they cook through more readily. And you get to eat more wraps!

Melt the fat in a frying pan on medium heat & fry the meat balls, turning as each side browns, in batches.

Put each batch in a low oven to keep warm, if you are serving them right away.

Serve with lettuce leaves & AIP-friendly Tzatziki. Everybody builds their own: Tapas-style. 

Tzatziki (AIP & WahlsPaleo+)

 from petra8paleoAIP Tzatziki

  • 1 tin (chilled) full-fat no-additive coconut milk
  • 1 cucumber
  • 2 tablespoons lemon juice
  • 1 tablespoon apple cider vinegar
  • 1 teaspoon salt
  • 1 teaspoon dill

Ensure the tin of coconut milk is chilled: refrigerate overnight or for a few hours (I just leave mine in the fridge).

Grate the cucumber into a bowl.

With your impeccably clean hands, squeeze the liquid out the grated cucumber and transfer into a second bowl. Pour the cucumber juice into a glass or a mason jar.

Repeat, squeezing the liquid again & transferring the cucumber back to the first bowl. Pour the liquid in the jar. If it’s a juicy cucumber, repeat the squeezing, transferring & pouring a third time.

Drink the cucumber water. Yum.

Whip the coconut cream: Open the chilled tin of full-fat coconut milk. Scoop the solid cream off the top & put it in a bowl with high sides. Whip with an electric mixer until smooth. Use the remaining coconut water in a smoothie or put it in your stock pot.

Add the whipped cream and remaining ingredients to the cucumber and mix thoroughly. Taste and adjust seasoning.

Put it in the fridge until the meatballs are ready.

You can make the Tzatziki a day ahead, just pour the coconut-laced liquid off before serving (Yes, I drink that, too).

Low-FODMAP variation

Coconut is low FODMAP in small quantities, but becomes higher at higher doses. Rather than skimp on Tzatziki, just shift the ratio. Grate an addition cucumber and double the lemon juice and apple cider vinegar. It’ll be more cucumber-iffic than a traditional Tzatziki, but you won’t have to moderate quite so much.

Tzatziki Fusion:  with sliced avocado & custom-made AIP-friendly sausage from your favorite butcher

Tzatziki Fusion: with sliced avocado & custom-made AIP-friendly sausage from your favorite butcher

Greek Meatballs (AIP & WahlsPaleo+)

 from petra8paleoGreek Meatballs & Tzatziki 2

Yield: 90 mini meatballs

  • 2 lbs ground lamb
  • 1 bunch cilantro, chopped
  • 2 tablespoons capers
  • 2 teaspoons salt
  • 1  heaping tablespoon turmeric
  • 1 teaspoon cinnamon
  • 2 tablespoons dried mint (optional)
  • 3 tablespoons lard, tallow or coconut oil

Mix all the ingredients (except the fat) together with your hands.

Form into about 90 mini meatballs.

They’re mini because they cook through more readily. And you get to eat more wraps!

Melt the fat in a frying pan on medium heat & fry the meat balls, turning as each side browns, in batches.

Put each batch in a low oven to keep warm, if you are serving them right away.

Serve with lettuce leaves & AIP-friendly Tzatziki. Everybody build your own: Tapas-style.

If you’re on the WahlsPaleo+ (or another ketogenic protocol), 11 of these cuties=4 ounces of lamb.