Medical Privilege

I alluded to this yesterday, but I want to make it explicit: in some ways, I am very very lucky.  I have amazing health insurance, and a job that only pays well, but has extraordinarily flexible hours.  I live in a big city with a lot of medical providers.  I have a lot more resources to heal myself than most people, and I’m grateful for that.

My experience with hypochlorhydria and diagnosis thereof

As I said last week, my hypochlorhydria probably started at birth.  My symptoms included the following:

  • High protein or fiber foods felt like they just sat in my stomach.  I felt nauseous and just generally icky.  For you World of Darkness fans, imagine a vampire ate human food.  That is what it felt like.
  • High protein meals in particular often gave me a headache.
  • These symptoms were noticeably better if I had soda with the meal.
  • There were years I lived on spaghetti and tomato sauce.  Tomatoes are highly acidic.
  • Blood sugar issues.  My fasting blood glucose level tests always came back perfect, except for the fact that I was emotionally destroyed by them.  I tended to crash after more than an hour without food.  My ex-boyfriend (we broke up almost five years ago but remain very good friends) still gets a haunted look if you mention me with low blood sugar to him.
  • Despite this, I was really bad at anticipating hunger.  By the time I noticed, the pin was already out of the grenade.
  • I always felt insecure about food, even though I’ve always lived in a home with a full fridge.
  • Low cortisol levels, especially in the morning, but cortisol too high at night.
  • Low thyroid numbers.
  • I could feel like I was starving at the same time I felt disgustingly full and bloated.  I had been on the HCl for almost 9 months before it occured to me food could be a solution for hunger.
  • Poor dental health, despite having the best care money could buy since infancy.
  • A running list of nutritional deficiencies.

I was seeing a “functional medicine” doctor (with an MD), who spotted and treated the nutritional deficiencies and hormonal issues, but not the root cause. I’ll admit most of the symptoms are pretty nonspecific, but I did bring the soda thing to her.

Some time later, I was referred to a psychiatrist for possible anxiety issues.  I think that psychoactive drugs are invaluable when necessary but also pose some serious risks, and should be used with caution.  I found a psychiatric ARNP who advertised a nutritional focus and talked to her.  She listened, and suggested that I might have an anxiety disorder, but she also saw signs that I might be incapable of digesting food, and that that could be contributing.

There’s are several ways to test for hypochlorhydria (also called achlorhydria).  There’s some expensive, highly technical ways involving an endoscopy or a pill with a pH lab and a radio transmittor. Or you can take an HCl supplement with a protein heavy meal.  If you don’t get heartburn, congratulations on your newfound diagnosis.

My ARNP originally phrased this as “if the pill makes feel better, you have hypochlorhydria”, but that was a mistake.  I was so deficient that a single pill did not make a damn bit of difference.  The instructions on the bottle say “1-2 pills per meal”: that would not get me through half a pear, much less meat.    When I first started, I pretty much alternated one bite meat, one HCl pill.  That’s calmed down some, although sometimes I still need quite a lot

I listed the improvements in my health in the last post, so I won’t repeated them.  I don’t want to exaggerate, so let me be clear that HCl pills did not magically fix everything wrong in my life, or even my body.  But they improved a lot of things, and they laid the groundwork for other interventions that cured other things.

HCl supplements are not the only treatment for low stomach acid.  Dr. internet also recommends Apple Cider Vinegar.  I tried it and found it burned my throat, but that could be related to the long term heartburn I had.*  There are also digestive enzymes: I found them useless before I started HCl, but they’re occasionally helpful now.  

Of course you’d ultimately like to know why your stomach acid is low.  That was the first question everyone asked me when I told them my new diagnosis.  I was completely uninterested.  I had only just gotten access to a source of sustenance that the rest of the world took for granted, and I spent several months just luxuriating in that.  But eventually, I was ready to dig deeper.

There was a gap between when I was emotionally ready and when I actually did the tests, because they’re super unpleasant.  The first one was a stool sample.  I’m not so squeemish as to put off medical care because eww poop, but getting the sample was a logistical nightmare.  It needed to be mailed overnight after collection, which means a weekday.  I probably have one of the most flexible, understanding offices on the planet, but I still didn’t feel right organizing a stool sample in the bathroom.  Maybe if I could have mailed the whole stool, but the test required me to take samples from several different parts of feces (so it’s representative) and mail in just those.  So it took a while for me to manage that.  Eventually I did, and they tested me for many different things, and I came back positive for Heliobacter pylori.  We’ll cover the science more in a future post, but the short version is my doctor put me on some unpleasant herbs for a month.  Since then I feel better but am not using noticeably fewer HCl pills.

The second test was for SIBO (small intestine bacterial overgrowth).  SIBO is one of the reasons we can’t just label bacteria good or bad, because it refers to  bacteria that are healthy and necessary in the  large intestine moving into the small intestine, where they smoke and curse and litter.

The SIBO test is terrible and I hate it.  To prep for it you need to go 12 hours on a very restricted died (basically rice and eggs), and then 12 hours of fasting, and then three hours breathing into tubes (still fasting).  I can’t go more than an hour without eating at the best of times, but I stupidly did this two days after finishing the unpleasant herbs for H. pylori treatment, and all I wanted in the world was fiber.  I spent those 27 hours miserable and angry and physically shaking with hunger.  It took me a full day after the fast to be able to leave the couch.

After all back, the results came back indicating a mild SIBO infection.  I can only do so many things at once and I had more pressing issues at the time, so I put off treatment for the month.  Treatment in this case means “antibiotics that cost more per day than many people earn.”  The other choice was to live on specialized diet shakes for weeks.  I have severe emotional issues around food and excellent insurance, so expensive antibiotics were the right call for me.

I would like to tell you how that went, but as of the time I’m writing this I’m only halfway through treatment.  I should be done by the time this is published**, but it may take weeks to identify the effects.  So for now I will dig into the relevant science.

Coming up: the science of H. pylori and SIBO.

*Probably caused by food allergies, not low stomach acid.

**I wrote the set of digestive posts more or less simultaneously, because it wasn’t clear how the information should be organized until I’d done it.

Quick tips: roast vegetables

One of the goals I outlined for this blog was sharing stuff that helped me, whether or not there was rigorous research to support it.  This is one of those.

Getting me to eat well is hard.  I’m busy, I don’t like cooking and don’t have the time to do it regularly, I’m bored easily but need food stability.*  One food/technique I’ve found that does work for me is roasted vegetables.    The recipe is as follows:

  1. Cut any vegetable into bite-sized cubes.  If you’re not sure what to use, start with colored potatoes, which have a fairly neutral taste and more nutrients than Idaho potatoes.
  2. Put tin foil on a baking sheet or brownie pan.
  3. Dump the cubes onto the tin foil.  Put in a little bit of olive oil, and a lot of a pre-made spice mix (example).
  4. Mix the cubes up with your hands so the olive oil and spices are evenly distributed.
  5. Put in over at 350 degrees for 45 minutes.  Or 400 degrees for 90 minutes.

This let’s me get some variety in taste (by rotating spices) while sticking with a known-safe vegetable.  Or I can make a new vegetable safer by putting a known good spice on it.

It’s also very, very forgiving.  Boiled vegetables have a very narrow range of edibility.  Two minutes too little and they’re too tough, two minutes too long and they’re gross and slimy.  Roasting probably has some sort of ideal temperature and duration, but can tolerate huge variations in length and temperature and still be pretty good.

It’s time efficient.  There is a bit of a wait between prep and eating, but prep is relatively short, it reheats well so you can cook a big batch when you have the time and eat it when you don’t, and clean consists of throwing out the tin foil.  If you’re able to throw money at the problem, you can even skip the chopping step with a food processor.

It’s also pretty amenable to experimentation.  Most people like to seal up the foil because it holds in moisture.  I leave it open because I like them dry.  Temperature and time also have a great deal to do with it, and you can play with them secure in the knowledge you will be able to eat it even if you guess wrong.  People who like having more than one thing at a time (weirdos) can put in multiple veggies.

So that’s my go to meal.  It is not everything, but it makes me feel nourished without making me anxious, and that’s more than I could say for most food.

*This could easily be my bacterial flora overadapting, ort hat I’m more likely to recognize new food as food and kick off the digestive process.

True facts about Helicobacter pylori

Helicobacter pylori is a bacteria found only in the gastrointestinal tracts of humans and closely related primates.  When I say in the stomach, I mean in the stomach.   H. pylori burrows into the mucous coating your stomach and touches the epithelial cells.

Image Credit: Zina Deretsky, National Science Foundation, under US Government Works license
Image Credit: Zina Deretsky, National Science Foundation, under US Government Works license

Fun fact: in the presence of acid, the gastic mucous hardens in an almost solid shell, which H. pylori cannot penetrate.  It works around this by preferentially seeking out high pH areas within the stomach, and by releasing ammonia to neutralize the acid.  So H. pylori can be both a cause and consequence of low gastic acid.  This fits in with my general view on physical processes and life in general:  everything either stops on its own or is part of a self-reinforcing loop.

H. pylori is most famous for causing gastric ulcers.  This was especially important because it was a beautiful example of something previously considered a “lifestyle” disease having a distinct, exogenous cause.  I use it as a go-to example of medical science not respecting its limitations.  Alas, my example was itself oversimplified not respecting its limitations: only 60% of ulcers are caused by H. pylori.  Half the remainder (20% of the total) are caused by NSAIDs, and other half are caused by “Other”.    I do wonder how they’re determining presence.  I had two different H. pylori tests done (both on a stool sample), and only one cam back positive.   Putting this on the list to investigate further.

The coolest cause I found was Zollinger-Ellison syndrome,  in which tumors made of gastrin-secreting cells cause an overproduction of gastrin.  This is how I learned they can test for gastrin levels directly, which I am curious about given its likely contribution to my digestive issues.

H. pylori also raises your lifetime risk of stomach cancer, but only by 0.6 percentage points.

Despite that scary sounding list,  80-85% of infected people  show no symptoms.  That may be due to genetic differences in the bacteria infecting them.  There is also research suggests that H. pylori is, or at least was, mutualistic with humans, and that lack of it increases a person’s risk for gastrointestinal issues.  If that is true, the question becomes:  is this pathogenicity -causing-strain new, or has it always been present, and only recently became dangerous?

H. pylori treatment protocols commonly include proton pump inhibitors , which make the stomach less acidic.  This struck me as a rather interesting choice for fighting a pathogen that prefers high-pH environments: apparently the goal is to coax the bacteria into areas more easily reached by antibiotics.

Confession: I thought that the stomach had a thriving bacterial ecosystem, of which H. pylori was an unwanted guest.  It turns out I was thinking of the large intestine.  Almost nothing survives in the stomach, and of the things that do, it’s unclear that establish permanent residence, much less are mutually beneficial.

Adventures in amateur research: implausible mechanisms

I’ve referred to the scientifically questionable book my scientifically questionable sensory integration therapist gave me before.  It’s name is  The Fabric of Autism.  Let me walk you through its loss of credibility.

As I mentioned before, TFoA refers to the hypothesis that thiomersal causes autism as accepted fact.  That is a very big strike against it.  But all the best theories were once fringe hypotheses, and people who believe one fringe hypothesis will often believe another, so I kept reading.

Then TFoA referred to information the author received from patients using Facilitated Communication, accepted as naturally as if the patient spoke.  I vaguely remember FC from a psych 101 class I took in 2004: FC was a breakthrough that allowed autistic people to write out their thoughts, thoughts mainstream practioners had denied they even had.  People thought to be entirely nonverbal were writing novels.  It was a miracle.

Only FC was being used by people who had never learned to read or write.  You can pick up verbal language without explicit instruction, but not written.  And even if you could, autists were writing full sentences without looking at the letters- and the FC hunt-and-peck method is simply impossible to touch type with.  FC went on to fail every double blind trial thrown at it.  In the time between introduction and discrediting, several people were sent to jail for sexual abuse, where the only evidence was FC-expressed accusations.

I checked wikipedia, and my recollection was more or less correct.  They present it as more controversial and less laughably terrible than my class, and it’s always possible new research was done or the technique has changed since I took my class.  Or maybe it just happened to work for these individuals. But given how horribly misused faciliated communication was in the past, I believe the author should note that history and what makes this FC different from the bad old days.  Failure to do so is strike two.

Then the book had a good stretch.  It posited some plausible mechanisms for how sensory and inner ear problems could hurt the digestive system.  Then it tried to do the reverse.  I’m well disposed to this sort of thing.  Anything that isn’t self-reinforcing will stop.  But the mechanism proposed was that poor digestion leads to bad posture, and that causes the endolymphatic sac in the ear to underinflate (this is what we spent so much time on Wednesday).

I can’t prove that doesn’t happen.  But I am very, very certain that bad posture would have a lot of other, more noticeable effects, some of which would themselves affect the ear.  A mechanism that broad should be accompanied by a list of other expected symptoms- something the user can compare their own symptoms to and see if this offers a parsimonious explanation.  TFoA does none of that.  It offers no checkpoint for a user to say “oh, this isn’t me” and walk away.

I didn’t consciously decide that that was the last straw, but I haven’t picked up the book since.  And while I kept up with my old exercises, I didn’t work on incorporating new ones.  This is to my detriment, since the exercises really do seem to help no matter how terrible the science they’re based on is.  I have some hypotheses as to why that is, but I can’t share them without committing all the sins I just accused the book of, so they will need to wait for more research.

Digestion, hormones, acid, and bacteria.

When I was first diagnosed with low gastric acid, I assumed that the acid was needed to physically break down the food, which never quite made sense because protein itself is mildly acidic.  It turns out that I was wrong, and that the primary effects of gastric acid are to denature protein (which a protein loses its shape without losing any of the covalent bonds between amino acids) and to activate digestive enzymes.

[Backing up a step: enzymes are biological catalysts.  Given the right materials, they make chemical reactions happen faster.   But enzymes are not perfectly specific, and can do a lot of damage in the wrong environment.  For example, food enzymes digesting your food is good.  Food enzymes digesting your stomach is bad.  One way to maximize positive effects and minimize negative effects, or simply waste, is to produce the enzyme in an inactive form (known as a  zymogen) that can be activated once the enzyme has moved to the correct environment or the correct raw materials are available.]

There are many digestive enzymes, but the one of interest to me right now is pepsin. Pepsin is one of three primary enzymes that digest protein, and the only one produced in the stomach.  Or rather, the stomach produces it’s zymogen, pepsinogen.  Pepsinogen is useless until it’s turned into pepsin by gastric acid, which is also produced in the stomach (but in a different cell type).  Pepsin can also be inactivated by high concentrations of the products of the reactions it’s catalyzes, a common pattern called a negative feedback loop.

So high gastric pH/low gastric acid inhibits protein digestion by keeping pepsin in its inactive form.  It’s possible that what I have is not low gastric acid but low pepsin levels. All HCl supplements contain significant amounts of pepsin, so that could be why they help.  Digestive enzymes didn’t do me any good until I started HCl, so I don’t think that’s the explanation, but I can’t rule it out with the current data.

Gastric acid production is stimulated by the hormone gastrin (note that this is far from the only effect of gastrin release), which is itself stimulated to production by gastrin-release peptide.  GRP is stimulated to production by “the vagus nerve”, which is technically true but not informative, because nerves are mere messengers, and the real question is who is sending the message.  There is the research pointing to a link between  sensory input and digestive chemicals.  Other research pointing to a link between gastric flora and gastrin (more).  But  the honest answer is that we don’t know.

Which puts the question in good company.  This post barely scratches the surface of  what we know about the chemistry of digestion, and there’s a lot of we don’t know, and that we don’t know we don’t know.

My medical issues: digestion

In March 2013 (age 28), I was diagnosed with low gastric acid.  This turns out to be really important for things like “digesting food.”  I could manage macaroni and cheese and candy and other things that aren’t really food, but protein and fiber made me feel ill.    My doctor prescribed me HCl Supplements as both diagnostic test and treatment, and suddenly I was able to eat both.

In hindsight, this went back a very long time.  When I was in pre-school or early elementary, the family joke was that I must photosynthesize, because I never ate anything.  I distinctly remember my mom telling me I would never make it as a cave man because all the plant life was too tough for me to chew, and meat was just out of the question.  My best friend from 3rd grade still remembers how I ate nothing but bagels when I slept at her house.

So from age 0 to 28, I survived on spaghetti with tomato sauce.   This transforms the question from “why do I have so many chronic problems (constantly sick, anxious, musculoskeletal pain, terrible oral health, adrenal-fatigue-no-hypothyroidism-no-adrenal-fatigue-again)?” to “how are my chronic issues so minor?   Were we on to something with the photosynthesis thing?  My hometown is the #2 most overcast city in the country, and my current home is #1.  What super powers would I develop if I moved to Phoenix?”

Now that I have the HCl supplements and can actually digest food, I’m feeling a lot better.  I have more energy and more cope.  I get sick less and recover faster. My dentist commented that my (previously miserable) oral health was looking a lot better, without being told anything had changed.  Friends commented on how much better my skin looked. I gained muscle mass. And oh yeah, I don’t constantly feel ill for no reason.  Pretty much everything you would expect for someone suddenly gaining the ability to digest food.

Coming up: My experience with hypochlorhydria and its treatment and the science of the stomach.

Why “Aceso Under Glass”?

You may be familiar with the rod of Cauceus as a symbol of medicine

Caduceus symbol by Rama and Eliot Lash (public domain)
Caduceus symbol by Rama and Eliot Lash (public domain)

I hesitate to call this usage wrong, because it’s been used as such for 150 years and people will reliably interpret it as medical, but it is based on bad mythology.  The caduceus staff was associated with Hermes, who had nothing to do with medicine.  It was used out of confusion with the  Rod of Asclepius.

Rod of Asclepius, author: Rama, public domain.
Rod of Asclepius, by Rama (public domain)

Ascelpius was a god or demi-god of healing.  He had six daughters.  Hygieia and Panacea did pretty well for themselves, to the point that I don’t need to tell you what they’re the goddesses of,  and both have lavish wikipedia entries.   Two others (Meditrina and Aglaea) have little to do with health and appear to be engaged in some horizontal myth transfer, since there are characters with similar names and related areas of focus but very different  parentage in Greek mythology.    The remaining two are Iaso (Recuperation) and Aceso (Healing and Curing).  They have short wikipedia entries, but at least everyone agrees on who they are.

Recuperation is a good thing, but doesn’t captivate me.  Healing and curing interests me a great deal.  I’m interested in how they work, how they’re blocked, how you know they’ve worked, the distinction between the two, why something heals one person and hurts another, and… well, this list gets very long very fast.  So that’s why I chose “Aceso.”

The “under glass” part represents a few things.  One is that I’m very literally studying the healing process.  But I’m also studying how we study the healing process.  Right now we have the choice between relying on traditional large peer reviewed studies, and qualitative provider accounts.  Both of these have serious limits, and I want to explore what those are.

So that’s how I arrived at “Aceso Under Glass”.

Why I’m Writing

I am not a medical professional of any kind. My qualifications for writing a medical blog are as follows:

  • A BA in Computational Biology, focusing on behavior, ecosystems, and math, that I haven’t used professionally since graduation in 2006.
  • A father with a PhD in statistics.
  • A series of mild-but-serious-but-compensated-for medical issues, which may or may not be interconnected.
  • A library card.

So while I am not qualified to diagnose, cure, or prevent any disease, I am much better equipped than your average layman to investigate and evaluate medical research. In a perfect world, every MP would be better than me at this, for every possible problem. This just isn’t the case. My research has saved me where doctors have failed. And the best MPs, the ones I couldn’t replace with Dr. Internet? They love it when I do my own research, because it leads to me giving them more useful information that they can apply their superior knowledge to.

With that said, here are my goals for this blog:

  • Provide specific information that creates a spark of recognition, so others can help themselves.  While researching a particular sensory integration book I stumbled on to sensory integration sea turtle, which alerted me to the existence of weighted blankets, which have helped me more than anything in the original book.  And the sea turtle doesn’t think thiomersal causes autism.
  • Demonstrate good DIY medical research so others can better investigate their own issues.
  • Practice medical research for medical research’s sake. I’m seriously considering pursuing a career as an Nurse Practitioner. If I love this doing this research, it’s useful warm up. If I hate it, that’s good to know before I spend $200,000 on making it my career.
  • Help people evaluate their doctors. Is she right to ignore that mild symptom? Is that drug worth the side effects? I can’t tell you, and I mostly can’t even tell you what to ask, but it would make me really happy if something I said helped someone figure out the right question.