When Legitimate Illness Becomes Fad

I get it. You overhear the beautiful, Lululemon-clad soccer mom at the next table telling the waiter that she’s sensitive to gluten. As she pours herself a flute of Pellegrino, she answers a call from the salon confirming her hair and nail appointments. Within 30 seconds you’ve summed her up: she’s a snobby drama queen who feigns “special circumstances” in order to convince herself—and the world—that she’s got the 411 on being healthy and strong. She wants attention. She has a need to annoy the crap out of anyone who will listen to her dietary woes.

And sadly, you may be right. That whole gig aggravates me too.

But I’ll tell you what pisses me off even more: know-it-all people who superimpose their “well informed” fad diagnosis on me.

What prompted this little rant is seeing, yet again, a Facebook post linking to a May 2014 article that supposedly “debunks” the idea of gluten sensitivity. Specifically, the headline claims that researchers have “thoroughly shown that it doesn’t exist.”

Rhetoric lesson 101: any article that cites one study of 37 people and one study confirming the first study, and then claims that they’ve thoroughly shown that non-celiac gluten sensitivity is nonexistent—has an agenda. This is a classic case of cherry-picking stats and quotes to discredit any gluten-avoiding person who can’t prove with a blood test that they have Celiac Disease.

Case in point: the journalist who claims to have uncovered perhaps the biggest fraud in dietary disease history, fails to mention that the studies she cites examine gastrointestinal effects only. They were not looking for anything outside the digestive tract. And that’s where, as they say, the baby and the bathwater part ways. Eating foods that contain gluten don’t bother my stomach at all.

At all.

Never have. As far as I know, I do not have Celiac Disease. But that doesn’t mean gluten doesn’t genuinely affect me.

About 20 years ago I was diagnosed with Fibromyalgia (another illness often labeled “fad” because there’s no blood test to prove that it exists. I wish the excruciating pain I have when it’s flaring on every arrogant naysayer’s wise ass. But I digress.)

When the meds, the physical therapy, and a slew of alternative treatments didn’t help, I decided to try and go gluten free as a last ditch effort to arrest my debilitating chronic fatigue and pain. To my surprise, it helped. A lot. Before, I’d spend about six hours a day vertical, i.e. on the couch or in my bed (hence the “debilitating” descriptor.) Eliminating gluten from my diet cut that time by more than half. I didn’t know why it helped, but it helped. I remember trying to talk myself out of it after having been gluten free for several months, by eating a McDonald’s hamburger one night.

I was in bed for three days.

My kids used to make fun of me for being gluten free (this, before it was even a “thing.”) They’d tell me it was all in my head. About seven years ago I got a call from my endocrinologist, who informed me that my antibodies for Hashimoto’s Thyroiditis were off the charts. In short, I definitely have Hashimoto’s Disease, which means that my immune system is attacking—and destroying—my thyroid.  Before she hung up, she said,

“Oh, and by the way: a majority of the people who have Hashimoto’s are sensitive to gluten. You might want to avoid that.”

I was way ahead of her in the sense that I’d been avoiding it for years. But that day I finally knew one of the reasons gluten was a problem for me. I immediately sent an email to my daughters with the subject line, “Booyah!.”

Fast forward to 2014, when I learned from my rheumatologist that my antibodies for Sjogrens Syndrome indicated a clear diagnosis. Sjogrens is another autoimmune disease that attacks—and destroys—the saliva and tear producing glands. It’s characterized by dry eyes and mouth, fatigue, chronic pain and rashes (the latter of which is what prompted me to go in to see the doctor again in the first place.) In severe cases, Sjogrens attacks vital organs.

And here is where we finally reach the point of this mini-tirade:

Those with autoimmune diseases have bodies that are delusional.

The thyroid isn’t my enemy; it’s my friend. But my body attacks it as though it were an invader. I love my tear ducts and saliva glands, but my body doesn’t. The hallmark of an autoimmune illness is that your body turns on itself.

How does that relate to gluten?

My body has gluten on the known terrorist list. Eating it causes systemic inflammation in my body. I don’t know why, any more than I know why my body tries to attack its own tissue.

But I do know this: when I eat foods that contain gluten I end up feeling really, really sick: my body aches like a mofo. My joints swell, my skin begins to turn a very pale shade of red, and my body is slightly feverish and warm to the touch. My gastrointestinal system is completely fine, but systemically I am channeling the autoimmune equivalent of the flu. And that misery, for me, is reason enough to avoid it.

So the next time you see a study that supposedly proves something doesn’t exist, why don’t you scratch that “authoritative” surface before you post it on your Facebook wall? I’ll make a deal with you: if you won’t categorically throw me in with the crazed, en vogue celiac wannabes (and they do exist), I won’t assume that you’re a blowhard who’s posing as an informed dietary whistle-blower.

Seems like a fair trade to me.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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