celiac disease

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.

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.

The messy world of supplements

A delayed celiac diagnosis means I struggle with adequate nutrition. I’m still combatting a lifetime of unabsorbed nutrients. It’s exhausting.

I have to rely on supplements in some cases, and supplements are the Wild West of the nutrition world. Little regulation goes into them, and it’s entirely possible that vitamin bottle doesn’t contain any vitamins at all, and the only way you’ll ever know is if someone tests it, or if it contains something risky and someone gets hurt.

I am allergic to lanolin, which is used to produce the majority of vitamin D3 supplements. D3 seems to be better absorbed by most people (especially those with gut problems) compared to non-lanolin derived D2. I took massive doses of D2 for months with no impact on my single-digit levels. I managed lanolin-derived D3 for awhile, but eventually the allergy symptoms got too severe. In the last several years, a vegetarian source of D3 has been discovered (lichen), which works well enough.

A new bottle of D3 I recently purchased caused me a lanolin-like reaction. I decided to write the company, because it seemed like the wrong D was in the bottle. I emailed the company with the lot number, explained the situation, and hoped they’d look into it.

They contract with a 3rd party QA service, which asked me to call them on the phone. I talk on the phone a lot for work and I’m exhausted. I asked if they would work by email. The email bounced back and there is no way to get a hold of them without calling on the phone.

I emailed the manufacturer again and explained I am tired and disabled. I’m happy to help you with this free labor, but please let me do it by email. They said they would.

I never heard back from them, and today I got an email reply, weeks later, claiming I gave them an invalid lot number so the case was being closed. I checked my sent mail, and the lot number they’re working on is different than the one in my original email.

Seems like working by email should prevent this, because everything is in writing, but the communication still got all bungled up.

I replied with the correct lot number, but who knows what’ll happen.

No one even offered a coupon for the two brand new bottles of D3, which are medically necessary but unsafe to take.

Celiac + allergies under capitalism is a dangerous existence.

Book: “Jennifer’s away” by Jennifer Esposito

I have been intrigued by Jennifer Esposito since she left a hit TV show due to celiac disease. She even wrote a book about it: Jennifer’s Way.

It turns out it was more complicated than that: her celiac disease is very severe (like mine), and her acting job was full-time hours at part-time pay without any accommodations for celiac. She became very ill and still got no accommodations.

It’s nice reading experiences of people with celiac as severe as mine. It’s validating and reassuring to know there are people who are as profoundly affected by this disease as I am. It’s important to hear people reiterate that this is an autoimmune disease, and it is serious. And it’s relevant to know that even thin and conventionally attractive women are not believed, or even committed to psych hospitals, before diagnosis (and sometimes after).

The first 2/3 of the book is her celiac story. It’s compelling and heartbreaking and infuriating and familiar. An illness so severe that it causes permanent damage, and takes an average of a decade to be diagnosed, with the simplest medical treatment in the world.

The rest of the book is about how to get diagnosed and adjust to post-celiac life. It’s the usual stuff about kitchen and bathroom products going to dumpsters, about missing nutrients, and navigating social situations. It wasn’t news, but it was interesting… until I read the part about lemon juice being alkaline and how important it is to make your body less acidic with foods like lemons and grapefruits.

It’s hard to take the rest of the science seriously when such a fundamental fact is mistaken.

Lemon juice has a pH of 2. It is unquestionably acidic. I believe this started when the Food Babe made these same claims.

I did learn (and confirmed elsewhere) that 90% of serotonin is produced in the small intestine… which explains a lot of mental health problems that pair well with celiac disease.

The lemon thing made me put down the book, though.

I don’t do resolutions

But I think I’ve got some advice for myself in 2021:

  1. Put on my own oxygen mask before helping others with theirs.
  2. No one knows more about me than I do. Time to act like the expert I am.
  3. My story is worth telling.

what to do now?

do i blog again? do i give up on any kind of public voice? i honestly have no idea. maybe let’s try again.

i’ve been seeing people touting the miracle that is oat milk, framed as an alternative to almond milk, which is currently being demonized for the perceived amount of resources required. however, almonds are still better than animal-based dairy, and subsidies are never factored into these calculations. Not only that, but almonds themselves grow on trees that don’t need replanting year after year, which is better for the air quality for local workers and residents, compared to fields replanted each season (and that’s not even addressing the less ethical practices of field burning as a means of turning it over for a new crop).

anyway… i wish that the oat bandwagon wasn’t shitting on people with celiac and wheat allergy. seems like the vast majority of gluten-free fad dieters are totes cool with oating the hell out of their lives, and since companies only care about selling product, they sure as shit don’t care about oat contamination for the small minority of the GF market who has to be GF for medical reasons.

yet another way the world isn’t made for people like me.