Fourteen Years Ago

August 30th, 2012

Fourteen years ago, we took our twenty-five pound four-year-old son to the hospital for an intestinal biopsy to figure out why he had stopped growing.  The very small boy was swamped by his hospital gown: it puddled around his feet like Yoda’s robes. The tiny bit of intestine they snipped that day told us everything we needed to know: he had Celiac Disease. Gluten (a protein found in most grains) was destroying the surface of his intestines so he could no longer absorb the nutrition his body so desperately needed. No matter how much he ate, he starved.

Fourteen years ago, the doctor told us this was good news: a completely gluten-free diet would cure our son. If, however, we didn’t follow a scrupulous GF diet, he warned us the complications could be serious, anything and potentially everything from horrible pain to malnourishment to stomach cancer.

So . . . new lifestyle. Fourteen years ago, we met with a nutritionist who outlined the restrictions of a gluten-free diet. I’ve written before about how much harder it was to find gluten-free products back then or a knowledgeable waiter at a restaurant (times have changed), but slowly, bit by bit, we figured it out.

Entrees were relatively easy.  But baked goods–cookies, cakes, breakfasty things like scones and muffins, etc–those were tricky. Fourteen years ago, I baked a chocolate cake using only rice flour and it was inedible. But I learned to blend GF flours and to find good cake mixes and to convert (most of) my favorite recipes.

And in fourteen years, I’ve gotten pretty good at it. Croissants, apple pie, focaccia . . .  If you can make it with wheat flour, I’ve probably made it gluten-free.  And then there’s the GF bread and pasta and rolls and flours–and all the trips to Whole Foods and Trader Joe’s and the kinds of places that stock those kinds of things . . .

Fourteen years of all that.

Two days ago–fourteen years after the original diagnosis–I stood in the dining hall at an east coast college while the head of food services told us not to worry: at every meal, they would have an entire table devoted to scrupulously gluten-free foods and many of their other meals could be prepared gluten-free as well–all you had to do was ask. “You’ll have plenty to eat,” she told my freshman son, whom we were leaving there that day. “He’ll be fine,” she told me with a reassuring smile.

Back home, where our family of six was reduced to four, I filled up a cart at the supermarket with foods bursting with gluten: Lucky Charms, real lasagna noodles, Pepperidge Farm goldfish, etc.  I unpacked the bags in my kitchen and tried to pretend it was going to be fun to eat whatever we wanted.

A cart filled with gluten: more bitter than sweet.

But I couldn’t convince myself.  Deep down I know that every time I reach for real flour instead of my carefully-calibrated blend of gluten-free starches, it’s going to feel wrong. Eating real pasta will taste wonderful and feel wrong. Blithely letting bagel crumbs mix in with the cream cheese–how carefree!  . . . and how wrong. Nothing will feel right again until Thanksgiving when my freshman boy comes home and I’ll have to keep a gluten-free kitchen again.

So I’m already planning Thanksgiving dinner: turkey, of course, with gluten-free stuffing and gravy thickened with cornstarch, not flour.

I wouldn’t make it any other way.

  • Marla Miller says:

    this brought tears to my eyes….such a mama you are…and such a FRICKIN good story teller…:)
    thank you.
    marla

  • Marla Miller says:

    this brought tears to my eyes….such a mama you are…and such a FRICKIN good story teller…:)
    thank you.
    marla

  • Anonymous says:

    Like Marla Miller, my eyes filled up with tears reading this. I could see this tiny child in the hospital and feel both the shock of what it must have been like to realize you had to change everything about food to keep him alive, and now the odd feeling of being able to eat all this food…only you can’t have him. Each item with gluten is another example that your child is not at your home. It’s a strange feeling.

    I stood at the grocery and started to reach for my 18-year-old’s favorite cereal (Honey Nut Cheerios), and then put the box back because he’s off at college. It was peculiar and painful to put that box back. As I walked the aisles, I kept seeing things I used to buy for him — Head & Shoulders shampoo even though he didn’t have dandruff (he just liked the smell of it) and Old Spice Body Wash. Each product I passed seemed to call out to me “Mom! Mom! Remember ME?”

    Anyhow, thanks for your beautiful. poignant post.

  • Anonymous says:

    Like Marla Miller, my eyes filled up with tears reading this. I could see this tiny child in the hospital and feel both the shock of what it must have been like to realize you had to change everything about food to keep him alive, and now the odd feeling of being able to eat all this food…only you can’t have him. Each item with gluten is another example that your child is not at your home. It’s a strange feeling.

    I stood at the grocery and started to reach for my 18-year-old’s favorite cereal (Honey Nut Cheerios), and then put the box back because he’s off at college. It was peculiar and painful to put that box back. As I walked the aisles, I kept seeing things I used to buy for him — Head & Shoulders shampoo even though he didn’t have dandruff (he just liked the smell of it) and Old Spice Body Wash. Each product I passed seemed to call out to me “Mom! Mom! Remember ME?”

    Anyhow, thanks for your beautiful. poignant post.

  • Claire says:

    Thank YOU for that beautiful comment, and you too, Marla. It hurt so much to walk out of that freshman dorm . . . and to keep walking. I’m so glad he’s where he should be and I want him home so badly. No one warns you about THIS when you’re pregnant!

  • Claire says:

    Thank YOU for that beautiful comment, and you too, Marla. It hurt so much to walk out of that freshman dorm . . . and to keep walking. I’m so glad he’s where he should be and I want him home so badly. No one warns you about THIS when you’re pregnant!

  • Wow! !4 years of gluten-free life-style… why does it feel wrong to eat gluten yourself? What a beautiful story from a stunted boy to a healthy college student! Congratulations, Claire. Is your oldest moved out now too???

  • Wow! !4 years of gluten-free life-style… why does it feel wrong to eat gluten yourself? What a beautiful story from a stunted boy to a healthy college student! Congratulations, Claire. Is your oldest moved out now too???

  • Claire says:

    Yes, Kim–only two kids left at home. Our family feels very small. (And I do eat plenty of gluten–it’s really about cooking with it at home–that’s what feels wrong.)

  • Claire says:

    Yes, Kim–only two kids left at home. Our family feels very small. (And I do eat plenty of gluten–it’s really about cooking with it at home–that’s what feels wrong.)

  • Barbara says:

    This reads like a love story to me.

  • Mama bear at her best!!!

  • Mama bear at her best!!!

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