The Gluten Monster

(c) THPStock -

(c) THPStock –

I’m on a couple of AND’s list servs. Earlier this week, a dietitian sent out a note wondering if someone could help her motivate a patient who’s having trouble sticking to the GF diet.

Reading this sent me down memory lane. When I was first diagnosed, I was 17.  I had never heard of celiac disease before (no one had, really).  I was diagnosed by accident – my doctor was testing for something else and decided to do a duodenal biopsy while she was doing the endoscopy.  She caught the celiac, and my life hasn’t been the same since.

Because I was 17, I kind of thought my doctor was full of it. I cheated all the time. I got really good at little tricks my family wouldn’t notice – for example, when my family would get pizza, I’d get some of the leftovers out of the fridge when everyone else was out doing something else.  Instead of cutting off a chunk from the bottom of the slice or the crust, I’d cut a very, very thin slice down the side of the entire slice.  This way the integrity of the slice was preserved, and once I rewrapped the tinfoil, no one would be the wiser. It was easier with things like Kraft mac’n’cheese.  I could just take a quick forkful from the fridge whenever I had a few minutes alone.

This was incredibly stupid of me. But since I didn’t feel that different, I didn’t think it was a big deal.  Losing gluten, on the other hand, was absolutely tragic.  You would think that, after my experience a few days after the day I was diagnosed*, I would have stopped being a dumbass.  Sadly, being a dumbass is kind of what seventeen-year-olds specialize in (amirite?).

What finally  “scared me straight” was reading a book about a young girl with cancer (My Sister’s Keeper. PLEASE don’t let the movie keep you from reading the book. To this day, it’s one of my all-time favorites) about a year later. The author goes into a lot of detail about the sick character’s treatments and symptoms. I had never seen or read such a realistic portrayal of what a long-term struggle with terminal cancer is like.

I finally put two and two together and realized that if I kept destroying my intestines, I’d be in the same situation as Kate in the book.  People with celiac who are not following the gluten free diet have a much higher risk of cancer, especially lymphoma in the small intestines (1).  There are many other diseases that celiac raises the risk of, as well – other autoimmune diseases, liver problems, mental health issues, thyroid disease, and infertility, just to name a few. Once you’re on the gluten free diet and stay on it, this heals both the intestine and the immune system, so the risk decreases again. But for someone cheating as much as I was, the risk was very real.   Forcing myself to consider the long term instead of the here and now – especially at 18, when we all think we’re invincible – was really difficult.

I ended up telling my family about all my little tricks so that they could help me stay on the gluten free wagon. I’ve since developed a lot of other strategies to help me through difficult meals.

Even now, all these years later, I still use a lot of those strategies. For example, last night I was out to dinner with a friend and the smell of the bread basket was driving me insane. I haven’t eaten “real” bread in over a decade, and when she asked me if I minded if she had bread I said no.  It doesn’t usually bother me anymore.  But this stuff was obviously fresh out of the oven, with a ramekin of whipped butter on the plate.

I’ve learned that what helps me in situations like that is distracting my senses somehow.  If I sit on my hands, I start thinking about the feeling of the chair under my palms and my jeans on my fingers.  I make myself pay attention to other senses until the smell doesn’t bother me anymore. If I can, I get myself a really good drink with a strong smell, or I focus on my menu, or I even just chew a piece of really minty gum until the offending food is gone or I’ve gotten over it.

I hope the patient this dietitian is counseling is able to find a way to help herself.  I feel for her!

*For “one last hurrah,” I went out and ate half a small pizza, an order of cheesy bread, and a brownie.  I then spent the next twenty-four hours huddled in the bathroom, crying.

1.  National Foundation for Celiac Disease Awareness. Intestinal cancer and celiac disease. Celiac Central website. 2015. Accessed June 04, 2015.

One thought on “The Gluten Monster

  1. Pingback: How to Pack for a Gluten Free Vacation | HealthyEmily

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