Now we're cooking with gas

I must be feeling better... this evening I ended up, without planning to, cooking several things to tide me over the hot couple of days we're heading into, and I was fixing three things at once while rocking out to a remix of RamJam's "Black Betty" which was running in my head.  My feet aren't too happy now, but my energy and good mood are back.  Amazing what eliminating chronic pain will do.

I made a double batch of baba ghanouj, because I'll eat that any and every day, and all I need are some chips.  I made some beet salad for a memorial service I'm attending tomorrow, and I'm sure I'll have leftovers.  I made some marinated potato salad, ostensibly for tonight's dinner, but it was so late by the time I finished it that I knew it would be far better with some time to itself.  And, finally, I came up with a recipe for lime ice pops -- the ones I could find were either blends of lime with something else, or just didn't seem to fit my needs.  We'll see how they come out; still, it's a good start on stuff to eat while it's over a hundred out.

I like simple food as much as complex things, and a lot of my recipes are sort of "Take however much of this you have, and throw in this other ingredient until it looks/tastes/feels right".  So quantifying them for a new person can be a little challenging, as simple as they are.  My beet salad is essentially "cubed cooked beets, a little salt, some dried thyme, and enough balsamic vinegar that it feels like enough, then drizzle with olive oil".  I sort of stumbled on it some years ago, but it turned out to be something that even people who aren't fond of beets think is okay.  It must be something about the balsamic vinegar.

My method of cooking means that I can adapt easily, though.  When making baba ghanouj, I knew that I needed a substitute for tahini that added umami (savory) flavor, but also some bitterness, as I've never met a tahini that wasn't bitter to some degree.  I landed on pureed ripe olives (savory) plus Bragg aminos (umami boost) plus dry mustard, as I remembered that mustard powder or ground mustard seeds has that particular bitter quality.  I'm still working on a substitute for ricotta cheese, but it needs that same savory quality, plus a rich mouthfeel, and a fine-grained but fluffy texture... I'll probably experiment with the same ripe olive puree plus something to add body; possibly moist breadcrumbs.  It may need a little extra oil to give it the same richness, we'll see. 

But that analysis, that tendency to break each food down into its most prominent qualities, is how I can do substitutes which may not be identical, but sometimes result in a food which is equally good.  A similar effect can be seen in the vegan ice cream recipes that use avocado as a base: guess what, a ripe Hass avocado is essentially identical to a plant-based heavy cream, and you can use it as such.  I've done exactly that to make vegan tikka masala sauce (which was marvelous, by the way).  I'll have to post that recipe too, with both dairy and vegan variants.

I like cooking, obviously.  I like taking time to focus on something basic but nourishing, seeing it take shape, and figuring out how to tweak it to be how I want it.  I like food prep, which occupies the hands but leaves the mind free -- to think, to listen to audiobooks, to half-watch television.  I'm good with tools, and I have a finely tuned sense of time and heat and texture.  Practice fills in the rest.

That love of cooking has been a huge source of relief and comfort to me over twenty years of dealing with shifting food sensitivities and dietary needs.  Low-protein has probably been the biggest shift I've ever made, bigger even than doing low-carb (which I did several times, for various reasons). But I'm finding that a lot of my old favorites are still fine, and some others just need a little nudge to bring them into line.  Then there are challenges, like lasagna, or a proper chili.  I'm happy to embrace some of those because I know that I have solid options to fall back on if they don't work.  After all, failure comes with the territory.  Failure is when you really learn.  And by this point, even my failures are almost always edible.  So why not seize the challenge with both hands?

Every zebra has an origin story

It was high school before I realized I was different.

My mom asked me whether I felt up to doing something on the weekend.  I did an internal check, and told her my pain level was pretty low, so I should be okay.  She frowned and asked what pain?  I discovered that day that not everyone measured their level of fatigue by how much pain they were in.  I always had.

I had to drop out of college in my junior year.  I tried again, a year later, and had to give up.  I worked at various jobs until I finally collapsed, unable to stand, and it was weeks before I could walk properly.  I blamed myself for almost two decades, for being weak, for not trying hard enough.

I stopped telling doctors that I was in pain because they always seemed unsatisfied when I said "everywhere".  The pain scale was useless when zero did not exist.  After the sixth or seventh doctor who ran the same tests and got normal results, I just stopped talking about it.

I applied for SSI, finally, when I was about to turn 40 and it was obvious I would never be able to work more than occasionally.  The system was designed to be full of difficult hurdles and deeply humiliating.  I was grateful to the judge in front of whom I finally appeared, for actually listening, and treating me like a human being.  The tiny stipend I finally received was an incredible relief.

I was referred to Stanford to see someone about my Chronic Fatigue Syndrome, which had kneecapped me in college and dogged me for twenty years.  A few new tests showed abnormal results, my first.  A couple of viruses, and elevated inflammation... A single pill, which did nothing, until I realized I could hike five miles and feel just a little sore in the days afterward.  The chronic pain was still there, everywhere.  I was still tired, but I didn't crash anymore.  We decided to work on the inflammation.  Five meds later, I had nothing to show for it but a row of unused pill bottles and some more adverse-reaction stories to add to my collection.

I had donated my genetic sequence to a CFS study, and decided to take a look at possible metabolic disorders.  A friend thumbed through the data and sent me a half-dozen gene clusters which I had double-recessive alleles in.  I ruled out two, decided one (G6PD) was likely but didn't explain the chronic pain, looked through the literature on the others, and decided that the easiest place to start was one I could test without a geneticist.  I bought some arginine and cut protein out of my diet.

It was very strange and lopsided, for a facultative carnivore, but in twelve hours I knew something was different.
In 24 hours, I was in less pain than I'd been in all week.
In 48 hours, I was in less pain than I'd been in all month.
In 72 hours, I was in less pain than I'd been in all year.

I had found the culprit.  More tests would have to be done, and some doctors would need to be convinced, but I was almost certain.  Almost two months in, I'm sure.  I have some flavor of urea cycle disorder.

The urea cycle is what breaks down protein into amino acids. About eight malfunctions exist; most of them result in a buildup of ammonia in the body, as it can't be converted properly to urea to get pulled out by the kidneys.  Ammonia can cause all kinds of havoc, including (apparently) chronic pain.
As a group, urea cycle disorders are estimated at about 1 in every 35,000 people.

So far, the doctors haven't argued much.  That may be a testament to how hard I've worked to find medical professionals who actually listen, or it could simply be that most have never heard of it.  My GP nodded, said that was interesting but she knew next to nothing about it, and issued referrals to a dietitian and a geneticist.  The dietitian had never seen mention of it, but didn't contest my results.  My CFS specialist was fascinated and eager to run a couple of tests to nail down the diagnosis.  I'm still waiting on a geneticist.

I decided to start this blog to try to collect my experiences and whatever useful information I can find.  Since much of the literature and advice available is for infants, I've had to rely on the (still scant) information intended for adult sufferers of phenylketonuria (PKU).  They can't have whole protein either, but for different reasons.

I have twenty years of experience dealing with food sensitivities (thanks to a solvent injury, leading to several food intolerances), I've been wheat-free for a couple of decades (that was one of the sensitivities I acquired), and I have a background in biology and diagnosis, so I'm ahead of many of my fellow UCD zebras already.  I'm winging it while I wait for the medical professionals to catch up, and probably breaking new ground.  I'm used to that.  Ever since the first time a doctor gave me that look as a teenager -- that "I don't know what to do with you" look -- I've been training to be my own specialist.  I'm pretty good at it by now.  I hope what I find can help someone else as well.