The Unseen Battles

The Battle You Can’t See

A hard day with celiac disease, the loneliness of an illness no one can see — and the one thing I hope you take away from it.

We were running late for church, and I was starving. On my way out the door I grabbed the half of a granola bar my husband had left on the counter. I’d never tried that brand, but the package said “gluten-free,” so I finished it in a couple of bites. Then I turned the wrapper over and read the small print: “packaged on shared equipment with products containing wheat.”

My heart sank. This is my great frustration with gluten-free labeling: a product can be called “gluten-free” because every ingredient in it is gluten-free — and still make me sick if it touched wheat on a conveyor belt, in the mixing bowls, at the packaging line, or on a worker’s gloves. “Gluten-free” and “safe for a celiac” are not always the same sentence.

And I wasn’t done. In the car, hunting for a piece of gum, I found a pack I’d set aside weeks earlier — I’d suspected it once before of making me sick. The company had changed the packaging; the pieces were square now instead of the usual shape, and I’d never called to confirm it was still safe. In a hurry, I popped one in anyway. Not a good choice. Between the granola bar and the gum, one of them was about to cost me the whole day.

• • •

The slow drain

By the first meeting I could feel it starting. We sat in the foyer, and I wasn’t nearly as on top of keeping the children quiet as I should have been. When I lifted my three-year-old onto my lap, she felt impossibly heavy. My thoughts were clouding over; I felt far away, and unable to be social.

Let me try to describe what a gluten reaction feels like for me, because it’s the part no one can see. Once my body absorbs the gluten and recognizes it as an enemy, it’s as if someone has hooked an electrical cable to me and switched on a machine that slowly draws out every bit of my energy — until I can’t lift my own arm, can’t walk without help. In the second meeting, sitting beside my husband with our new baby asleep in her car seat, I felt my batteries going dark. We’d been asked to give the prayers. A kind man tried to make small talk, and I could barely answer — I just let my husband carry it. Then I leaned over and told him: take the baby out, and come back for me.

I always feel so sorry for myself in those moments, and the tears came. I was frustrated, and embarrassed.

• • •

Being carried

He took the baby into the hall, then came back. He lifted me to my feet, and I leaned nearly all my weight into his side and his arm, and we walked slowly out while my tears kept falling. A friend gathered up the baby in her car seat and followed us — down the hall, out the doors, across the parking lot, to the car.

As he shut my door, I could hear the muffled version of the conversation we’ve had a hundred times: the quick, impossible attempt to explain to a neighbor that I’d “had a reaction to something” — we’re not even sure what. That part always stings. How do you explain, in two seconds at the curb, how carefully I read every single label, how vigilant I am — and that it’s the quiet change in a familiar product that undoes me, and can take me days to trace?

I’m home now, a few hours later. My husband made me lunch — raw rice-paper spinach wraps, edamame with peanut sauce, sliced peaches with coconut milk and a drizzle of maple syrup, and a tall glass of lemon water — and I can feel a little strength returning. I still can’t walk unassisted or lift my baby by myself, but I can type. My daughter carried the laptop up to me, and here I am, telling you my story — as if saying it out loud might somehow help me carry it.

• • •

The island no one sees

My husband has held callings in our church — he’s served in the bishopric — the kind that put a family in a bit of a fishbowl. You know how it goes: “Oh, that England family — they really should —” Everyone has an opinion about what we ought to be doing.

What people don’t see is that celiac disease isn’t a fixed, predictable thing. My reactions rise and fall with everything else in my life — stress, what I’ve eaten, the physical toll of something like giving birth. Gluten in liquid form hits me faster; hidden in a solid food, it takes longer to surface. I can be fine in the morning, wave to a neighbor, eat one wrong bite, and be bedridden by afternoon — missing something I was supposed to be at. Some days I feel like I live on a remote island where no one can see me, and no one can judge me.

There was an afternoon I was supposed to go to a baby shower. I’d been up early doing commissions, met with an employee at the house, and felt the weakness begin to come — I chatted with the employee outside, waved to the neighbor whose party it was — and by the time I got back inside, I was shaking. I knew I had only minutes: get the kids in, secure the house, put on a movie, before my strength was gone. I never made it to buy the gift. I never made it to the shower. And I didn’t even call with an excuse — I just thought, someday they’ll see the video of our lives, and someday they’ll understand. It didn’t stop the hurt. It still hurts, when I think of my friend who was having the baby, and my friend who planned the shower.

I wrote once, on an earlier post, that I’d reached a point where I could eat gluten without much of a reaction. I’ve since learned to be careful how I say that. My symptoms really do vary in how loud they are — a fresh postpartum body, worn down and rebuilding, feels everything more sharply. But a quiet reaction was never the same as a safe one. This day was my reminder: for a celiac, gluten is never truly harmless, whether it roars or barely whispers.

• • •

As close to the earth as I can get

This is why I keep pulling my family closer and closer to food the way the earth grows it. On the drive home, when we were lamenting that regrettable gum, my husband joked that I should’ve chewed the frankincense gum we keep in the car. I laughed weakly — I didn’t especially want frankincense breath — and let it go. But my mind went straight to the challenge I’d set myself that week: nothing processed. Which, of course, includes store-bought gum. Onto the “do not eat” list it goes.

The closer I get to whole food — fruits and vegetables straight from the plant, raw seeds and nuts and grains, as unprocessed as I can find them — the safer I am, because there is simply nowhere for hidden gluten to hide. My pantry looks beautiful right now, and I don’t think I’ve ever felt better than when I’m eating this way. It’s those clever products that mimic the real thing that I have to watch.

• • •

The people who make me feel human

A few small graces from this week. At the health food store, stocking up on nuts and seeds and gluten-free grains with my seven-year-old, a woman stopped to tell me she could tell I never take my kids to McDonald’s — she could see it in how healthy my daughter looked. I smiled. “Absolutely not.”

In the same aisle, a couple with a six-month-old asked how old my baby was. “Three weeks,” I said. The mother’s eyes went wide — “You’re up and about? I was still in bed at three weeks.” Three weeks in bed, I thought. And then I thought about my five children, and about my husband being out of town for two of the three weeks since the birth (and four of the weeks before it), and something loosened in my chest. I thanked her — really thanked her — because she had just handed me permission to be tired. Five kids. A week to recover before my husband left to go save the world, and then just me. Of course I’m tired. I have every right to be. Thank heaven for the people who make me feel human again.

• • •

The whole reason I’m telling you this

Please, be gentle with people. You could guess for a million years and never land on the real reason someone does what they do.

Everyone you meet is fighting a battle you cannot see.

Once, a woman rolled her eyes at me while I stood in the store squinting at the label on a juice bottle. She assumed I was counting calories. I wasn’t. I was hunting for hidden gluten — and I found it, and put the bottle back on the shelf. She’ll never know that. Most people never will.

So we don’t really get to judge one another. We only get to love. That’s the whole assignment: to love people unconditionally — battles and all.

My thoughts and my prayers are with you.

“Bear ye one another’s burdens, and so fulfil the law of Christ.” - Galatians 6:2

With much love,

Steffanie

A practical note for my celiac friends: “Gluten-free” on the front of a package and a “made on shared equipment with wheat” warning on the back can live on the very same wrapper. When in doubt, look for a Certified Gluten-Free seal (which requires testing to strict limits) — and any time a familiar product changes its packaging or recipe, it’s worth a quick call to the company before you trust it again. Your body is worth the extra minute.