Book: Wheat Belly by William Davis

Here is a book that I could not read, because it was so focused on the OMG! OBESITY! PANIC!, that it was hard to find any usable info.

I suppose I should’ve expected that with a title like Wheat Belly, but it’d been long recommended by people in the celiac disease community as the “a-ha!” guide to making sense of the hundreds of seemingly unrelated symptoms of celiac disease. But these authors brought everything back to fatness and weight, as glutenfreedom as the cure, and that being fat is icky.

They say glutenous, they mean gluttonous.

Anyway, I skimmed the whole book and couldn’t find a single page that didn’t loop back to anti-fatness.

I was hoping for a book about the history of wheat and how that impacts the body, but this book ain’t it.

Disease names

It’s long past time to stop naming rare (or any) diseases after the people who discover them.

Naming chemicals and elements and other scientific discoveries makes sense… mostly. (Too many times where the people who did most of the work didn’t get any of the credit.)

But diseases aren’t just diseases. There are human beings attached to those diseases. Human beings who likely experienced years of suffering, misdiagnoses, incorrect treatments, possibly disbelief or being treated poorly, perhaps accused of malingering. Who knows how many people died without knowing what was wrong with them.

Give diseases accurate names.

We really don’t need any more Asperger’s syndromes.

Book: What We Don’t Talk About When We Talk About Fat, by Aubrey Gordon

This is less a book review and more of a (rare) blog post.

Some years ago, in the early 2000s, I had an epiphany. After countless attempts to starve myself thin, after countless doctor’s appointments where I was prescribed weight loss for everything from sinus infections to migraines to broken fingers, after countless unsolicited comments about my body from strangers and loved ones, after countless microaggressions and acts of hostility regarding my size, I had an epiphany.

I am fat. And that’s okay.

My epiphany came at a good time. I’d been starving myself and doing everything “they” say to do, and yet my weight wasn’t budging. The internet was booming, and there were neighborhoods of people dedicated to fat acceptance and fat liberation. They were part of or learned from groups like NOLOSE, ASDAH, and from fat elders. People just like me, who realized they were fat no matter how they tortured or stressed their bodies, their bodies were wise, their bodies knew best, and their bodies adapted. They stayed fat. Some got fatter. We all knew that our dignity and humanity should not be dependent on our ability to conform to a more socially acceptable size and shape.

By the late 2000s, fat acceptance had started being co-opted by “body positivity.” Body positivity was for thin, white, abled, cis-gendered women. Body positivity excluded the fattest among us. Body positivity was framed with “it’s not about being thin, it’s about being healthy.”

At a time when I was at my sickest, sick enough to be forced to quit a career I’d just begun, sick enough to spend more days in bed than out of it, sick enough to be congratulated on my illness-induced weight loss (while being simultaneously berated for continuing to be fat), I felt wholly excluded from this unrecognizable version of body acceptance. I wasn’t healthy or thin.

Today, fatness is demonized more than ever. While people are becoming more aware of other prejudices and slowly making efforts to mitigate them, anti-fat bias is on the rise. Let me reiterate: While small improvements in implicit biases like racism, sexism, and homophobia have been recorded, and while ableism and ageism have remained about the same, there has been a 40% increase in anti-fat bias.

Being fat has become a symbol of failure. Fat people embody sloth and gluttony and greed. We are drains on society. We are inconveniences. We are ugly.

Having visible adipose tissue now has a diagnostic code, because it’s existence now a disease, even in the absence of other markers of health. It’s on my every medical chart note, regardless of the reason for the visit that day. A group of professionals with a long history of being easily swayed by the shiny gifts and baubles from the pharmaceutical industry decided to pathologize an entire class of people (the majority of people alive right now) simply for how they look, regardless of actual measurable scientific markers of health. These professionals are using an utterly racist metric, which has no basis in fact or health, to dictate who is worthy of evidence-based healthcare. Regardless of the ample scientific evidence that it’s possible to be fat and healthy or thin and unhealthy, the American Medical Association has simply chosen to deny reality.

Relatedly, a study of autopsies of very fat people discovered that they had undiagnosed medical conditions, indicative of significant misdiagnoses and/or lack of access to adequate medical care.

This is the natural result of decades of fatphobia. Decades of healthcare workers being incapable of seeing past body size or shape. Decades of friends and neighbors being taught and believing that it is better to be dead than fat. People are willing to trade years off their life for the chance to be thin.

What We Don’t Talk About When We Talk About Fat is about all of these things, and so much more. It’s about the personal experiences of actual fat people. About how we are hated because of what we look like. About the magnitude of the oppression ingrained in ourselves, in our loved ones, in our culture.

Book: China Rx by Rosemary Gibson and Janardan Prasad Singh

Before I got sick, I worked in pharma. I had a great pharma internship as an undergrad and I felt like I’d found my niche. I enjoyed analytical chemistry and I had a real knack for anything medical. I worked in the industry for a couple years, then took an analytical chemist position in another industry mainly because I wanted to move closer to my future spouse. I missed pharma and tried interviewing for positions closer to my new home, with no luck. (Probably for the best: the best prospect was at a brand new state-of-the-art research and development facility, which laid everyone off and shut down 6 months later.)

Once started treating celiac disease and adopting a mobility device for a failing back, I was ready and able to go back to work. But no one wants to hire a chemist who’s been out of the industry for nearly a decade. And by then, many of the jobs had moved overseas.

So this book was personally relevant.

China Rx describes the long game played by the Chinese government to become the only supplier of necessary items, including medications and supplements. Since the US government (and its corporations) is far more concerned with this quarter or this election term, it puts the Chinese government in a far better strategic position to achieve its long-term goals.

The US used to make its own antibiotics, vitamin C, and other drugs and drug products. Nowadays, much of the manufacturing of critical raw materials happens in China, because it’s cheaper. Drug companies want to maximize profits, which means purchasing raw materials at the lowest possible cost.

The book describes the heparin horror story when tainted heparin (a blood thinner used regularly in hospitals as standard practice to prevent blood clots, and which, incidentally, is a meat industry byproduct produced from the entrails of slaughtered pigs) sickened and killed many people. When the problem was identified, the FDA did not rush to act because recalling the US heparin supply would’ve caused a national shortage. It’s better to have potentially tainted heparin than no heparin at all.

The book also describes incidents in which Chinese companies prohibited from exporting to the US would use a different company’s label to circumvent bans and export to the US. These companies are partially owned by the state (Chinese government), so it seems more reasonable to assume this is a strategic governmental move, not unscrupulous business owners (although that happens, too).

One of the reasons China can manufacture so cheaply is its lax environmental regulations. For example, making antibiotics is a dirty job. It stinks, there are waste products, and an impact on the local environment. (Soil, air, water.) Rather than spending the money in the US to innovate a cleaner, safer manufacturing process, they outsource the same old ways to a region whose government doesn’t worry about it (to the detriment of its citizens).

The book discusses lax and loosening trade regulations that resulted from supply chain issues. The US military now relies on China for critical medications and medical devices. The US used to manufacture its own penicillin in wartime, but now it relies on China for the only treatments available for anthrax.

The FDA really has very little control over what comes in from overseas, and not much control over what happens in the US either. Recalls are voluntary. Testing is rare. The FDA lacks the manpower, authority, and budget to effect much change. And the revolving door between pharma and the FDA means that few people want to speak out. (Not to mention the overt censorship happening.)

Chances are, most of your medications and vitamins were manufactured in China. If not the entire product, then critical components like the active ingredient and/or the inactive ingredients responsible for extended release dosing. But labeling rules make it very difficult to figure out where your medicines are made. If you’re curious: you can call the manufacturer directly, and sometimes you can find the info on DailyMed or drugs.com.

It was interesting (if depressing) reading about places I’ve physically worked (and learning that some of those places no longer exist), and seeing what happened after I got sick. I know now that it wasn’t solely a long illness that prevented me from reentering the industry, but also many, many changes far beyond my control.

alternatives to the web are inaccessible to average users

The internet is more than the world wide web. tech folks get this, but everyday users don’t need to know, and likely don’t care. (if you do care, you might want to read about gopher.)

There seems to be a bit of a resurgence of the “low-tech” internet. (“Low-tech” is such a silly misnomer… the amount of technology it takes to access and build the internet is extraordinary and massive, and it’s still really new tech in the grand scheme of human history.) Some call it a renaissance. The irony is that many people with vision impairments have been using this tech for a long time, and it’s sometimes the preferred option for people accessing the web via very slow connections.

I am intrigued by the resurgence of gopher, and the new kid on the block gemini.

However, these are still inaccessible to the average user. It’s hard to find resources to help people access these nifty things who don’t already have a tech background or who have ample free time to learn. Since most of them can’t be accessed with a simple web browser, unless you happen to know of some kind of interface, they will likely remain inaccessible to the average end user.

The reason things like Facebook and Twitter are so popular and things like the fediverse are not so popular among everyday people is the usability factor. Just about anyone can figure out how to use Facebook or Twitter, but trying to access the fediverse in any kind of meaningful way is going to be impossible unless you’re already extremely technologically inclined, or you’ve got someone willing to hold your hand through your first few days of learning the ropes.

Personally, when I first accessed the internet in the mid-1990s, I ate up everything I could find, but I never could’ve done it without help from fellow users. I knew next to nothing about computers (I didn’t grow up learning to program or building my own computers, like many of my tech savvy acquaintances), but AOL made it really easy to get online, and within minutes, I met people willing to take the time to walk me through my first telnet connections. From my first telnet connection, a whole new world opened up to me. But I would not have gotten anywhere if people hadn’t taken the time to walk me through the most basic fundamentals.

I just don’t see that kind of assistance online any more. I see people encouraging others to read the docs (which is much nicer than RTFM, I suppose), but I very rarely see anyone stopping what they’re doing to help someone get a leg up on an elusive technology. It’s interesting to me that as we’ve become more aware of things like neurodiversity and learning disabilities, we’ve become less willing to help each other out for a common technological goal or a common good.

I don’t see myself adopting gemini or embracing retro gopher. It takes a significant amount of privilege to have the time and ability to sit down and adopt a new internet technology for fun. It’s not a privilege I possess.

Costco’s wayward catalogues

We keep getting Costco weekly specials to a PO Box we don’t use much… never mind that we aren’t shopping at Costco (Life Pro Tip: we have a membership only to access their reasonably priced Delta Dental plans), but also we don’t want wasted paper and space in our tiny post office box.

I suggested my partner find a phone number on the catalogue to call, to get us off the mailing list. After waiting on hold for 30 minutes, he finally got a human, who insisted she couldn’t talk to anyone but me because my name was on the account. (Never mind that I know my partner is an administrator of the account too.)

I’m in the middle of a busy work day. He passed me the phone and I quickly rattled off our addresses and my birthdate to “verify” who I am. (Never mind that the address is on the envelope, and my DOB is public record nowadays…) She offers to make my spouse an administrator so he can handle this BS, I thanked her and handed him back the phone.

He’s explaining that we don’t want paper mailings at any address on file, and the rep is insisting that we opted out of paper already, but cannot explain why we are looking at a brand new mailing received this week. No offers to ask someone higher up, just the suggestion it might be because we purchased goods from Costco.com (we haven’t, and never mind that her phone number is the one on the catalogue to opt-out)… so nothing was resolved.

Talk about bullshit jobs…

I’m tired of disposable tech

I feel like device manufacturers have moved entirely away from practicality and utilitarianism. Everyone loves a shiny new device, but I’m so tired of devices that feel like they aren’t designed to be USED.

A few months ago, we splurged on an entirely frivolous device: we bought a tablet. We don’t actually NEED a tablet, because the work we do is on laptops and phones. But as a chronically ill person, it would be nice to rest in bed and be able to watch things on a screen larger than my phone. (I could watch on a laptop, but that wasted valuable hotspot data.)

So we bought a Samsung Galaxy Tab A, because it was on the more affordable side, and we got a fairly decent deal to add it to our cell plan. We use it every night. We’ve stopped watching TV and I’ve stopped wasting valuable energy trying to figure out how to download things to a device that can be watched in bed. Honestly, I kind of wish we’d done this sooner, but it’s such a frivolous thing. And we aren’t very good at buying frivolous things.

This tablet is pretty good, but has limited on-board storage. We held off buying a micro SD card because money and frivolities, but this weekend we finally bought two 128 GB cards so we can download our favorites for enjoying when our signal sucks or the network is bogged down with other streaming RVers.

Of course we got a cozy little case for it, because we are klutzy and they never make these devices sturdy on their own. The case is slim, like the tablet itself, and it’s a pain to remove. This time, when I removed the case I (with my fairly limited strength) managed to physically bend the tablet and crack the back. Miraculously, the screen is still intact. (Thanks, liquid glass coating.) The display does look a little discolored around the edges.

Arrgh.

This is why we can’t have nice things.

Supplements… again.

Turmeric has been found to be helpful with some types of pain and inflammation. My doctor recommended a supplement that combines turmeric with fenugreek, because apparently this combination is better than turmeric alone.

She recommended Turmeric Forte, which is manufactured by Mediherb in Australia, but the only company who can sell it is Standard Process in the US. Trying to find information about gluten-status is… difficult.

I left two messages in December for a callback from QA, and no one called. I called again this month to try again. I got more info, but it wasn’t good info.

Is Turmeric Forte gluten-free?

Mediherb manufactures their capsules in a gluten-free facility, and they test every batch for the presence of gluten down to 5ppm, which is outstanding. That alone is very safe for me and nearly anyone with celiac.

But then those capsules are shipped in bulk to Standard Process, who then takes this nearly pristine gluten-free product, and bottles it on the same equipment that they use to bottle all their oat- and gluten-containing supplements.

But Standard Process tests their products for gluten, right?

Nope.

They don’t test their bottled lots and they don’t test the equipment after cleaning to confirm the cleaning was effective.

When I spoke with their QA person, they had nothing to say. They seemed unconcerned that they could be adding gluten to a GF product.

Products like that aren’t for people like me.

But it blows my mind that I have always had such a hard time finding work while companies are totally okay with sloppy QA or sloppy IT. I don’t get it.

Anyway… The history of Standard Process is shady as heck.

Gluten-Free-ish Oreos

Nabisco has been talking up their new GF Oreos since last year, even though they wouldn’t be released until this week.

They’ve been pretty tight-lipped about it, officially. There were pretty social media posts with a classic Oreo, and a few words about them being gluten-free. But no details: what ingredients would they be using? Would they be dairy-free, egg-free, and vegan like the original? Is there a new dedicated GF facility for GF Oreos? There was nothing on Nabisco’s websites.

Well now they’re in stores, but nothing’s changed. GF Oreos are still not on the company’s websites. I tried to find an ingredients list, but the closest I could find was an MLive article talking about trying them.

They’ve got rice flour (not surprising) and… oat flour.

I don’t think oat flour is safe for celiacs. Maybe some can eat them without symptoms, but I am unconvinced silent damage isn’t happening. My reactions to GF oats are so severe, just as severe as consuming gluten grains, that I may as well be eating wheat.

If nabisco cared about the celiac demographic, they wouldn’t have used oats. Oats are a lazy way to make food that can be labeled GF. GF oats are easy to acquire now, and GF labeling rules are lax. So instead of making something that’ll be enjoyable by the largest number of people, they go for the largest marketing gimmick and the fad dieter demographic.

I don’t really miss Oreos, but I miss convenience and normalcy and the fun of sharing a treat with someone. I don’t even want to give money to companies like Nabisco. It’s not like I’d be making Oreos a regular part of my diet, or anything more than a rare treat.

But gimmicks like these just make me feel more excluded from the modern world.

Book: “Body Respect” by Lindo Bacon and Lucy Aphramor

Body Respect: What Conventional Health Books Get Wrong, Leave Out, and Just Plain Fail to Understand about Weight is the follow up to Health at Every Size, a science-packed book about body size and weight loss. Body Respect is geared towards anyone interested in evidence-based healthcare and a more just world.

The reality is that diets don’t work. While many people may be able to lose weight in the short-term, the act of restricting calories (through diet, exercise, or both) results in complex biochemical changes that trigger profound negative effects on metabolism, stress levels, mental health, and many other important aspects of health in the long term. It’s not that people aren’t dieting properly (in fact, humans are really really good at it), it literally means that diets don’t work, and in fact backfire the vast majority of the time.

This book was empowering and an important read packed with science and a rational approach to what’s wrong with diet culture, the media, and current approaches to healthcare.