Monday, May 19, 2014

Gluten, Casein, and Why The Hell I Eat Weird S**t

Some people think I'm crazy...

A couple of days ago, a Facebook friend asked me for my thoughts on this article. My thoughts are varied and complex, and this is a huge topic that is basically impossible to compress into one blog post, but I suspect that she was asking this question in relation to the gluten-free casein-free diet that The Hubbles and The Kidlets follow, so basically: The study isn't wrong. Also: The study is wrong. More specifically, the study is the wrong study.

Let me explain. You should probably take a moment to get a warm drink; this could take a while, and I'll be linking to articles that you should read in order to really understand all of this.

Okay. First, there are lots of different things that people are talking about when they say "gluten intolerance". Sometimes they mean "Celiac Disease", which the Mayo Clinic explains very well here. It is a very serious disease that involves symptoms that vary from abdominal cramping to full-on "go to the hospital now, because everything is swelling, and staying alive is a good idea". Diagnosis is done via urine tests, blood tests, and a very uncomfortable, very invasive test in which doctors actually reach up in there and cut out a piece of your small intestine and look at it through a microscope. I have a few friends who have been diagnosed with Celiac disease, and it is literally life-or-death for them every time they eat food that they haven't prepared themselves.

It is also not what The Kidlets and The Hubbles have.

So let's move on to the second thing people sometimes mean when they say "gluten intolerance", which is "Non-Celiac gluten sensitivity", which is basically characterized by general bloating and discomfort and tiredness and Irritable Bowel Syndrome (IBS)-type things. This is what the study was looking at: is this a thing? And if it is a thing, is it gluten that is the problem, or is it something else in wheat and other grains, that coincidentally gets eliminated when one follows a gluten-free diet?

Studies like this are important, and I'm glad they're being done, because it's a good idea to get to the bottom of questions like this. And what this study found is that no, it isn't gluten; it's something else. (That something else is called a FODMAP, which is fancy-abbreviating for a short-chain carbohydrate that isn't readily absorbed by the body. You find them in things like corn syrup and artificial sweeteners and other things, as well as gluten-containing grains.) THAT SAID, any study in which a person is asked to self-report (i.e., report their own symptoms) is a study that, in my opinion, needs to be reconsidered, because DUH. You're asking for inconsistencies and bias there, guys. You are practically begging for them. And you are going to get them. In spades.

But IBS-type symptoms are not what The Hubbles and The Kidlets have, either. This study is not about them. Nor is it about most of the people who are both on the Autistic spectrum and need to follow a GF/CF diet. (Although it is about SOME of those people, because that's just how life works. There is always overlap.)

This brings me to the third thing that people sometimes mean when they talk about "gluten intolerance", which is probably best described as a lack of behavioral control when they eat gluten or casein. This can mean: a lack of ability to focus; a lack of ability to moderate their behavior when they feel an overwhelming emotional response; a more extreme emotional response to their surroundings than most people; an increase in self-stimulatory behavior; general difficulty picking up on social cues (as opposed to overtly stated directions); and a few other things that basically fall under "autistic behavior". (This is obviously not a technical term, but, you know, this is already kind of a long post.)

These symptoms are related to gliadorphin and casomorphin, two peptides in gluten and casein that don't get into the bloodstream of most people but do get into the bloodstream of some people, and that, once in the bloodstream, get carried to the brain and activate the same receptors in the brain as opiates. This has been shown to happen in rats, and THIS is the issue The Hubbles and Kidlet Number One have. This is not an allergy. This has nothing to do with antibodies or immune response. This is a chemical reaction akin to what happens when you inject heroin or smoke opium. You can read a little bit about that in this study here and also in this study here.

We figured this out because I noticed a bunch of Asperger-type behaviours in Kidlet Number One starting from when he was a toddler, and I had worked with Autistic kids for years before I had my own kid so I knew that this is sometimes a part of the equation, and so when Kidlet Number One was five and Kidlet Number Two (who never did any of those Asperger-type things) was one-and-a-half, we all peed in cups and sent them off to a lab that found way-too-high levels of gliadorphin and casomorphin in the urine that came out of The Hubbles and Kidlet Number One, and borderline levels in the urine that came out of Kidlet Number Two, and almost nil levels in the urine that came out of me.

So. No gluten and casein for us. Because Science.

We could do a bunch of tests and figure out why this is happening to them. We could try to find out if the problem is a missing enzyme, or a GI tract that lets more things through than it should, or both. But really, why bother? Those tests will be expensive, and they won't change anything about the way they eat.

It is important to note that not all people with Autistic Spectrum Disorder have this issue. It is also important to note that eliminating gluten and casein are NOT "cures" for autism or Asperger Disorder, and anyone who tells you otherwise is either lying, or misinformed, or desperate, or a combination of those things. Kidlet Number One is almost 11, and he still can't lose a board game without being on the verge of tears; he still turns red and starts to hyperventilate a little when plans change, or when his expectations for the day aren't met. There is a huge difference between his response to a sudden rainstorm that rains out a game of baseball, and his younger brother's response. And that is simply who he is. It is what the Universe handed him when he was born.

BUT, this diet has helped him. Kidlet Number One's teachers noticed a huge difference in his behavior when we took out gluten: his sensitivity to noise decreased, the number of total meltdowns decreased, his need to always do the same work in the same order was moderated, and the severity of the meltdowns lessened. His ability to cope with sudden changes to a planned schedule is much better when he is off gluten and casein than when he is on them. It is easier for all of us to live with him, and it is easier for him to live with all of us. And in terms of diagnosis, the psychiatrist put him on the "Asperger" side of the line when he was eating gluten and casein, and on the "normal but quirky" side when he wasn't. But, you know: it's a pretty sketchy line. He went from severe problems coping to less severe problems coping, and problems are problems, no matter what you call them.

SO: what do I think of the study? I think it's not relevant to me, but it might be relevant to you. And I think that we need some words that are more accurate than "gluten intolerance" to talk about all of these issues.

Thanks for stopping by.

Wednesday, February 12, 2014

Stickers, Crap, and Angst: Things That Make Me Cry

So, I've been doing a lot of reading lately. It might have something to do with the fact that my novel and I are sitting deep in the bowels of writerly angst - you know, that place where you know your manuscript needs a little work but you think it's promising, and then you open it up to work on it and you realize that it's awful, and the characters are flat, and you repeat yourself a million times, and this will never, ever, ever be as good as those books with the shiny award stickers on them, and it's not commercial and plotty enough to sell, so you might as well quit now and let The Hubbles carry the bills while you get fat eating bonbons and binge-watching Castle reruns and a loop of that Van Damme commercial on YouTube…

Maybe that's just me.

ANYWAY, when I know my work is terrible and I don't know how to make it better, I read. I read all the books with those nice shiny stickers on them. Because I'm masochistic that way. Why be satisfied with the knowledge that I need to improve when I can rub my own nose in it? Also, it's an opportunity to learn. And I want to learn from the masters.

So since my current WiP is a YA, I read a bunch of really good YA. I read John Green's Looking for Alaska, where I paid attention to things like how to structure the first chapter to introduce statement of theme without being too obvious about it (or how to be obvious and still get away with it), and how to incorporate backstory without making it feel like backstory, and how to make characters feel real, and pacing. I read it out loud to The Hubbles and learned about poetic prose and the importance of rhythm so that the words flow from sentence to paragraph to page to chapter and back again. I could get a whole writing course worth of learning out of that book. I cried a lot over the course of reading it, usually when I thought of my own sorry work-in-progress, but also when the story called for it.

I read Nancy Farmer's The House of the Scorpion, where I noticed how important it is to get the small details right, that the reason I knew I was in the hands of a good storyteller from the very beginning was that the sights and the smells and the sound of the wind just felt right. And I thought about archetypes, and Cinderella stories and Ugly Duckling stories, and how if I hadn't just read Cheryl Klein's essay on archetypes and plot in her book Second Sight, I wouldn't have noticed the archetypes in this book, but they were still there, and maybe it was my identification with those archetypes, my emotional response to them based on my own social and cultural context, that makes those kinds of stories so powerful for me as a reader. And I also learned about pacing. Again. There's another writing course in that book. I cried at the end of that one, too.

And then I opened my own WiP and I cried myself to sleep, because, you know. CRAP.

And then I read Eric Walters' The Rule of Three, because a kid in my YA book club picked it. And I have to be honest here - I didn't want to finish it. The dialogue seemed stilted (to me). The plot was predictable (to me). The characters were boring and stereotypical and, if I can take a minute to be arrogant on my own blog, pretty slow (to me). There was an interesting character, Herb, who showed up after about 50 pages or so, but he wasn't enough to pull me through the novel. I knew the publisher was excited about the book (because I had read it in an article in Publishers' Weekly or some place like that), but I couldn't figure out why. I thought it probably had something to do with the plot. And I know this stuff is totally subjective. So I did what I always do when I am mystified by a book's buzz: I passed it to The Hubbles and asked him what he thought of it.

He read the whole thing in a couple of days. He agreed with me on the dialogue and the characters, but he thought the plot was really interesting, and he loved Herb, and he figured that for the average YA reader, it was enough. It didn't change his worldview, but it diverted him for a few hours and gave him a distraction from bills and was entertaining. I learned a big lesson there, too: that just because a book isn't the kind of book I want to be writing right now, that doesn't make it a book that isn't worthy of existence. That there are different books for different people at different times. And that having an interesting plot is really, really important, no matter who your audience is.

I can't say that it made me feel any better about the state of my novel, but at least it didn't make me cry.

And then I read Vikki VanSickle's Words That Start With B, which isn't a YA, it's a Middle Grade, but which was delightful and welcoming and honest and wonderful in a wrap-you-up-in-a-cozy-blanket sort of way, and which filled my brain with real characters and a well-paced story. It was like rediscovering Judy Blume. And holy moly - the craftsmanship that went into making that book. I'm still figuring it out. There's another writing course right there. I'm mystified at the lack of buzz for this book. Or maybe I just missed it; I only recently got around to starting the Harry Potter series, after all. If my friends had to describe me, the phrase "late to the party" would almost certainly come to mind.

That book didn't make me cry, either - I take that as a good sign, that I can read a truly excellent book now without dissolving into hot, silent tears of self-loathing (although I can still feel them as I type, swelling at the back of my throat). I've been jotting down ideas for my novel, elements I can add that will strengthen a character, plot points I can change to raise the stakes and make things more interesting, scenes I should take out or rewrite. I'm not quite ready to look at the 58,000+ words that I wrote back in November, but at least I'm no longer battling the urge to just print the whole thing and set fire to it in a garbage can in the backyard.

Which brings me to the reason for this post, apart from letting you know what books I think you should read, which is this: reading is important if you're a writer. You need to read to learn how to do it right, and you need to read to distract yourself from your own misery when you know you're doing it wrong. You need to read critically, as well as for your own enjoyment. You need to read widely, both within your genre and outside of it. But you don't have to read everything. It's okay - even preferable - to put a book down when it isn't speaking to you. Just make sure you know why you're putting it down, and why someone else might want to keep reading. Get other people's opinions if you have to. Don't let a book pass through your hands without learning something from it.

And when in doubt, look for the stickers.

Thanks for stopping by.

Note: With the exception of Cheryl Klein's Second Sight: an Editor's Talks on Writing Revising & Publishing Books for Children and Young Adults, which is only available on Amazon and is thusly hyperlinked, the aforementioned books are all hyperlinked to their IndieBound pages, should you wish to buy them. But in case you can't find a local independent bookstore using the IndieBound search engine, or are a heartless soulless pathetic excuse for an individual who hates independent bookstores with every fibre of your being, here are those books again, this time hyperlinked to their Amazon or Chapters Indigo pages:
Looking for Alaska, by John Green
The House of the Scorpion, by Nancy Farmer
The Rule of Three, by Eric Walters
Words that Start With B, by Vikki VanSickle

Wednesday, January 29, 2014

Long Time No See! Also, BOOK DEAL! WOOOO!

Well, hello there, you lovely blog readers, you! It's been a while!

Okay, so that's actually my fault, owing to my inability to juggle daily videos along with writing, homeschooling, eating, housework, blogging, and personal hygiene, but ANYHOO…

Let's catch up!

FIRSTLY, I have begun a tumblr blog, which you can find here. I called it whereartmeetspolitics, because it's mostly about that intersection of art and politics, which is so central to my way of thinking and which I happen to find interesting. If I see a gif or photo or cool art exhibit like the Ai Weiwei exhibit According to What which I DID go to, you can find the gif or photo or my thoughts or whatever over there on tumblr. (Give me a couple of days for the Ai Weiwei thing - I have to figure out how to do a thing to my photos first.) Basically, GO THERE AND GO THERE OFTEN. I spend more time there than here, obviously.

NEXTLY, this blog is mostly going to be a blog where I talk about books and movies and books-to-movies and whatever non-art-meeting-politics things that happen to come up. Not much in the way of writing posts, though - I've pretty much covered all there is that I care to cover there, and besides, there are gads and gads of writing blogs out there, like this one by the amazing Debbie Ohi whom I am honoured to know and this other one by Casey and Natalie who have been cheering me on for years now and this really amazing one by Nathan Bransford, whose blogs are a source of magical coincidence. EVIDENCE:

Seriously, those blogs are excellent and they will fill all the gaps in your writing knowledge. Go knock yourself out.



I am VERY excited to announce that, along with my very talented friend Kari-Lynn Winters, I am co-authoring a non-fiction picture book called BITE INTO BLOODSUCKERS that will be published by Fitzhenry & Whiteside in AUTUMN 2014!

More info - and my own brand of happy dance - in the following video (which has REAL LIFE BUG FOOTAGE, but don't worry, I warn you ahead of time so you can pause it if you're squeamish):

Mark your calendars!

Later, gators.

Friday, March 29, 2013

SHATTER ME and UNRAVEL ME by Tahereh Mafi: Review and giveaway!

My review of the excellent SHATTER ME and UNRAVEL ME by the wonderful Tahereh Mafi!

The giveaway is international, but I have to have 20 or more people enter by midnight on the night of Thursday, April 4th, 2013 or I can't run the contest. (Choosing randomly between one or two people is ridiculous.)

Leave comments here or in the comments section on YouTube to win, and make sure you spread the word!

Wednesday, March 20, 2013

BLOOD AND GUTS, it's a fish dissection!

So, The Kidlets and I dissected a fish as a science lesson recently. Here's the result. WARNING: Not for the faint of tummy!

Happy Wednesday!

Monday, March 18, 2013

Monday Musings: On Changing the Status Quo

This is what I've been thinking about lately:

What do YOU think?

Friday-ish Forward: You Are Stardust, by Elin Kelsey and Soyeon Kim

This book is amazing. We borrowed a copy from the library and immediately went out to buy our own copy once we had read it.

Here's my full review:

Happy reading!