Tuesday, May 20, 2014

There's nothing 'free' about gluten free...

Lately, my social media feeds have been inundated with food shaming articles. The 'article du jour' this week seems to be about how gluten sensitivity is apparently "bullsh*t" based on a small-study that has recently been released that indicated that participants (all self-declared as gluten sensitive) did not show any significant different when placed on gluten-based diets.

While I tend to put very little to no stock in Jezebel articles, and there are countless flaws with extrapolating that gluten-sensitivity (also known as non-celiac gluten sensitivity, or NCGS) is a myth, the bandwagon of social media shamers have jumped on this one with zest and zeal.

The anti-gluten-free crowd is having a field day passing this around and gleefully mocking the 'gluten free' crowd for it's scientifically-disproven, fad diet.

The irony here is that the article itself isn't condemning those who don't eat wheat, nor is it trying to say that there aren't people who don't have very real aversions to certain foods that all seem to contain gluten. All that we can really conclude is that "something" is making people sick- but we're not entirely sure what it is...

But that hasn't stopped the entire dialogue from revolving around shaming people for their food choices.

I get it. "GFCF" is a trendy thing, especially in the Autism world. Many people are 100% convinced that taking their kids off of gluten (or even just limiting its intake) will magically transform their happy-stimming Autist into a quiet, well-behaved Allistic child.

Even if this was true (it's not), I certainly did not go GFCF with Sam out of an attempt to cure him.

I did it because multiple studies indicate that sleep disorders may be related to gluten-sensitivity.

For the first three years of his life, Sam didn't sleep.

And I don't mean he was a restless sleeper, or had a hard time sleeping through the night.

I mean he didn't sleep. He would average 2-3 hours a night, for weeks at a time. Then have one good night of five or six hours before going through the entire process again. He had not slept through the night (over six hours in a row) his entire life. Not once. Ever.

We had him tested for allergies. We raised the foot of his bed. We co-slept with him, and I extended nursing because we thought it might be a reflux issue. But nothing helped.

I needed to try something...and so I leapt into gluten free without even talking to my doctor.

I was so sleep deprived that I wasn't thinking clearly. And everything else had failed, so I was kind of banking on this failing too...so the decision to just "try" didn't seem to be that big a deal at the time.

But it was.

It was a game changer.

Within a week, Sam was sleeping at least 6 hours a night. Within a month, he was sleeping in stretches of seven to ten hours.

Now, almost a year later (June 1st will mark out gf anniversary), Sam goes to bed at 730pm and wakes up at 730am...

Unless it's a full moon...then all bets are off.

When we made the diet change to gluten free, I also started investigating co-morbid conditions that often accompanied intestinal disorders. I found that gluten intolerance could lead to absorption issues when it comes to fundamental vitamins, specifically iron, in which Sam was clearly deficient. He used to get finger print bruises from just changing his diaper and had deep, dark circles under his eyes...

So, we added in iron supplementation, magnesium supplementation and other key vitamins and minerals that we felt could contribute to his overall health given his very restrictive diet.

This was another game changer.

Within a few weeks, the bruising lessened. Within weeks, his skin colour and the quality of his skin was notably improved. His bodily functions had changed dramatically and his overall wellness seemed to improve like night and day.

We had people asking us, out of nowhere, what we had changed. They could tell something was different.

He was like a 'different' kid. Except not. He was the exact same kid, but happier.

...More mellow...

....More rested...

...More nourished...

...Less uncomfortable...

(Note: (In September, three months after going gluten-free, we also removed casein from his diet. I am not convinced that it changed anything for him- so we will be doing a test to see how he reacts in the near future.)

Gluten free was the single best decision we had ever made as parents.

Then suddenly, out of nowhere, everything changed. He went back to not sleeping. He went back to bowel issues. His skin started to get pale again.

We could not figure out what was wrong! Maybe it wasn't the gluten after all...maybe there was something else.

For two weeks, we racked our brains, desperate to figure out what had changed to cause such a massive regression in his health.

Then, one night, at 12 am, it dawned on me. We had started giving him a new rice cracker. He adored it. The entire brand of rice crackers was gluten free...but maybe...maybe this one wasn't???

So I ran, outside, to where he had left a half eaten bag under his swing.

Sure enough- "contains soy sauce".


Soy sauce has gluten in it.

And it was hurting my baby.

So away when the rice crackers, and I got MUCH more careful about labels.

We have not had an issue since.

In science, this would be referred to as a double blind experiment. Neither we, nor Sam, were aware that he was being exposed to gluten. His changes were document carefully on our sleep log, and coincide within days to his introduction to the new rice crackers, which had also been logged on our food log. It's not a scientific sample size, but it's a pretty good case study as far as anecdotal, uncontrolled studies go.

So, now Sam is gluten free. And so am I. And so is his sister. And his dad.


Because it's easier that way. And because gluten makes me feel like a bloated, disgusting mess of a woman. (Though that might be more from the fact that I am not used to eating many complex carbs and starches anymore since we have moved towards a mostly adapted paleo diet).

But mostly, it's just easier. Because cross contamination is a thing. And gluten makes my baby suffer.

We have never had Sam diagnosed as having Celiac Disease. In order to do so, we would have to have him placed on a gluten-based diet for a minimum of six weeks followed by an endoscopy. I'm not ok with doing either of those things just to confirm what I already know to be true: Sam can't eat gluten, nor can he be exposed to it in shampoo, detergents, playdoh or other substances. He also doesn't tolerate soy very well. I am unclear about how he deals with casein, but I'm not feeling any pressure to put him back on a high-dairy diet.

I don't need a doctor to tell me that. I know it to be true. And so does he. (Sam won't even touch foods that he doesn't have prepared by me because I think he is scared of what they might do to him...)

Some day, they might discover another protein or issue that co-exists with gluten that wreaks havoc on people's system. Someday, they might discover that NCGS is, in fact, a neurological reaction instead of an autoimmune or immune one, and that we've been testing for it inaccurately. One day they might discover a whole whack load of things.

But for now, Sam and I are Non-Celiac Gluten Sensitive. Because there's simply no other word to describe us yet.

There is nothing easy about living a gluten-free lifestyle.

There is nothing 'free' about gluten-free...not in time, money, energy, or emotional/social issues.

We get teased, taunted, and mocked all the time. My own family has yet to really understand how big a deal this is to us, despite all the changes that we have made.

You don't have to believe my story.

You can chalk me up to a 'fad diet' or 'trend follower' or 'cure mom' or whatever you want to.

Make whatever assumptions you want about my life, my goals, my judgment and my ability to self-assess.

I don't care.

Because my kid didn't sleep.

And now he does.

And, quite frankly, what I choose to feed him and feed myself is none of your damn business. 

So, next time you want to crack a joke about all of us 'gf hippies', please bear in mind that you don't know our story. You don't know why we reached the decisions that we reached.

And you don't know that my poutine from NY Fries is made with a corn-starch based gravy and is gluten free.

Food shaming is an asshole thing to do.

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