What Will It Be?

hourglassThe methodology of the six-food-elimination-diet to treat eosinophilic esophagitis is this: the top six most common food proteins are eliminated from the diet for six to eight weeks. That means no dairy, egg, soy, nut, wheat, or fish products could cross my five-year-old daughter’s lips during that time. After that point, she had an endoscopy to see if, after removing all those foods — even foods prepared on the same equipment with those foods — her esophagus would no longer be coated with eosinophils, the nasty white blood cells that had congregated there, ostensibly to fight against whichever protein or proteins they saw as poisonous to her body.

That was step one: all six foods. The endoscopy showed no visual sign of any eosinophils, and multiple biopsies gave us the same result. The verdict? Ah-ha! The culprit must be one of those foods! Or two. Or all of them. But this diet — it worked!

Step two was adding a food to her diet and repeating the six-to-eight week elimination of all the other foods, and then following it with another endoscopy. The methodology was simple: add a food, let her eat it for a while, check the esophagus. If the esophagus is clear, that food is not the culprit. Then you add another food and try again.

This process took nearly a year.

During all that time, Sammi’s reflux-like sounds came and went, tricking us into imagining that we’d found the culprit, over and over. When she started eating eggs — the first food she chose to add back —  she started making that sound again, that urpy, gurgly sound, and telling us “the food is coming up again.” Ah-ha! we thought. It’s eggs!

But then, the day of her third endoscopy (the first was diagnostic, the second was after the full six-food-elimination), the doctor came out of the operating room and showed us a picture of Sammi’s smooth, pink esophagus. “It looks great,” he said. And the biopsy confirmed it several days later.

This meant we hadn’t found the culprit, and we were mostly glad — eggs were a favorite protein in our vegetarian home, and we didn’t want to lose them forever. On the other hand, it meant at least six more weeks of not knowing the shape our lives would take.

Would the culprit be soy? That would be hard but not impossible. We’d lose tofu and soy milk (our “milk” of choice in normal circumstances), and eating out might be hard, but that was doable.

Would the culprit be nuts? That would be our first choice — always well-labeled due to all the people with nut allergies, they’d be easy to avoid. More importantly, Sammi didn’t like nuts at all — something we mused might be a sign.

Would the culprit be wheat? This was the worst possible option for us — mostly for me. A passionate baker and utter cookie-freak, I would deeply mourn the permanent loss of our weekly challah at Shabbat dinner.

Would it be dairy? That would be easy too, I mused. Severely lactose intolerant myself, I already knew where to find dairy free cheese, yogurt, ice cream, baked goods. Vegan restaurants are fairly easy to find in our area. Even Starbucks has dairy-free milk.

We waited, six to eight weeks at a time, to find out how we’d live our lives. We waited, followed the regimen, experimented in the kitchen, and had no choice but to let the sand pass through the hourglass and reveal the future.

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