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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Kindergarten Numbers

kindergartenOn the first day of kindergarten, Sammi was still in the midst of the six-food-elimination-diet. There was no peanut-butter-and-jelly sandwich in her lunch — no goldfish crackers, no chocolate chip cookies. I can’t remember exactly what it was, but my best guess is that it was a thermos of rice and beans, some fruit, maybe some vegan chocolate chips.

She was excited for school. We were nervous — not because of separation anxiety, fear of a too-challenging academic environment, or worry that she wouldn’t make friends. She was happy to go, smart and curious, and looking forward to being in the same class with her best friend. We were nervous because she’d be surrounded by food she couldn’t have and people who might not understand why.

Before school started, we met with the principal, the district health clerk, and her kindergarten teacher to set up a 504 plan. Unlike an IEP (an Individualized Education Plan), which creates a set of legally enforceable accommodations for students with one of 13 specific types of learning disability, a 504 plan is an option for students whose special needs fall outside those concerns and is designed mostly for use in a general education environment. It’s sometimes called a “health plan,” as it is commonly used for students with allergies, asthma, diabetes, etc. — things that don’t necessarily create a learning issue, but need to be managed during the school day. A great comparison of IEP vs 504 is available here.

Sammi’s 504 plan was fairly simple. It required that:

  1. No one at school was permitted to give her any food that I hadn’t sent from home. A lidded, clearly labeled box in her classroom held a variety of snacks I replenished as needed.
  2. All wheat-based dough (Playdoh) was removed from her classroom and, as necessary, from the art room.
  3. Reasonable notice for special treats provided by the school would be made to us so that we could provide an alternative for Sammi.

Her teacher was warm and lovely and went out of her way to make the process easy for us. She sent a snack-day signup letter home to all the parents in the room letting them know that there was a student in the room with special food allergies — an easier way to explain it than to describe eosinophilic esophagitis — and letting them know that they were not required to send special snacks, but that unpeeled oranges and bananas would allow that student to take part.

Some parents sent unpeeled oranges and bananas on their child’s snack days. Some didn’t. Sammi was fine with that.

Only twice that year did we run into trouble with noncompliance with that 504 plan. One day, Sammi came out the door of the school with her head low and her lip trembling. “Everyone got POPSICLES,” she said, “because we had a great first month of school.”

“Who gave them out?” I asked, hoping it was a surprise from a parent who didn’t know.

She named the principal, and said that he had tried to give her a popsicle twice, even after she said she couldn’t have it. “He said I COULD have it, that everyone could have it! But I said you didn’t send it, and he just gave my popsicle to someone else.”

Angry and said, I turned and saw the principal a hundred yards away, standing by a school exit. Asking Sammi’s sister to keep her company, I approached him and asked why he hadn’t let me know that he’d be giving popsicles to everyone. He said he didn’t tell anyone, that it was a surprise. I reminded him that he’d tried to give one to Sammi despite her 504 plan, and he said, “oh — but she didn’t eat it, right?”

I took Sammi home and made her homemade banana-peach popsicles. There was no point in arguing.

The next time it happened was after Sammi had passed through the most restrictive phase of the diet and had been given permission to eat eggs. The school social worker had high-fived her in the hall, and she’d been excited to bring a hard boiled egg in her lunch all week. We were all feeling free and grateful with just that one food returned to her, but truly, her diet was still quite limited. No dairy, wheat, soy, or nuts were allowed. When her gym teacher rewarded the class with cookies, she asked if they had things she wasn’t allowed.

“Go on, take it,” he told her, according to Sammi and her friends.

“No, I can’t,” she responded.

“Who wants Sammi’s cookie?” he offered loudly to the rest of the class.

That time, Sammi came home crying. On further investigation, I learned that the gym teacher hadn’t bothered to read the 504 plan provided to him because it was left on top of his mailbox and not inside it.

In the years since Sammi was in kindergarten, I’ve come to ache for the parents of allergic children who have to place so much faith in others to keep them safe. Had Sammi eaten a “forbidden” food, she would not have died. She would have simply had to restart that phase of the diet — each phase six weeks long. It was hardly the end of the world, but if she’d been dangerously allergic, it could have been.

A five year old should not have to be responsible for her own life.

A parent shouldn’t have to arm a five year old with that level of self-preservation skill.

For these two affronts, I’ve never quite forgiven the educators who ignored Sammi’s needs. Her kindergarten year was compromised enough.

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Eggs and the End of Judgement

eggs

When my five year old daughter learned that her esophagus had healed after eight weeks on the six-food-elimination-diet — eight weeks without dairy, soy, nuts, wheat, or eggs — the first food she wanted to “get back” was eggs. The doctor in charge of her case at the time was willing to let us decide which foods to introduce first, and so, on the way home from the hospital, I let Sammi come with me into the grocery store for the first time since her diagnosis. Until then, I hadn’t wanted her to walk past the thousands and thousands of products she couldn’t eat.

We held hands and literally skipped through the store together, planning the things we’d do with the eggs first. An omelet! Fun shaped hard boiled eggs in her lunch! Egg salad! Baking gluten-free muffins! It was a song, that list of foods. It was a banquet, oval and cool and encapsulated, even if I knew in the back of my mind that this was a test she might fail if eggs made her esophagus fill with eosinophils. We had at least six weeks to love eggs.

We got to the eggs and Sammi jumped out of her skin with joy:

eggs

 

As we prepared and ate eggs every way possible for the next several days, the last shred of the judgement I’d held about what people put into their pie holes just fell away from me forever. I’ve been a vegetarian since I was fourteen and highly lactose intolerant for the last fifteen years. Though I felt slightly uncomfortable with them, I still ate eggs to keep my dangerously low cholesterol from tanking. Even so, my diet was naturally still very limited, and eating just for fuel was a regular part of my life. I’ve spent many meals eating salad and bread for dinner at the homes of loving family who I couldn’t reasonably expect to follow what felt, even to me, like a daunting set of restrictions. I joked often about eating “hot wet noodles & vegetables” at weddings and steak houses when my social life required it.

Under it all, I resented everyone else’s ability to embrace cognitive dissonance. I had friends who fought bravely to save the whales, save puppies from puppy mills, end animal testing for cosmetics, and then ate hamburgers because they were so delicious. I had friends who popped Lactaid pills and went right on eating gelato against the messages their bodies were sending them. In my head, I couldn’t understand it. I wasn’t judgmental, really, I told myself, because it was just confusion. How do you hold these conflicting thoughts in your heads at the same time?

And then Sammi went through this crazy, crazy diet, and I finally got it: life is short.

Life is short, and you get a limited number of pleasant experiences in it. Joy can be finite. We all sit down with our conscience at some point and make a deal: I’ll do this and you’ll agree it’s ok, right? Parents do it all the time, little agreements with their values about how much television their children can watch, whether it’s ok for the kids to hear us say SHIT!!! when the door slams on our fingers, if staying up late on vacation is probably ok. We’re doing the best we can — with our bodies, with our hearts, with our children.

And just like that, I was done. Feed yourself and your family what you like. I don’t know what’s happening behind the scenes in your house, and vice versa. I sat my nagging, finger-wagging inner voice down and said: shut up. We’re all in this for the joy.

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Lentils I Have Known and Loved

lentilsThere has so far been no restrictive diet in our strange, medically-fraught life that did not allow for the consumption of lentils.

Green lentils. Brown lentils. Red lentils. We have eaten our weight in lentils over the course of the last nine years. Lentils in stews, lentils in soups. The sound of dried lentils hitting the bottom of a pot, the bottom of a glass measuring cup, the floor: this is the soundtrack that precipitates the lowering of my shoulders from my ears, the loosening of my jaw from a clench, the finish line of a racing mind. We can always eat lentils. I can always make lentils.

Dairy free, egg free, soy free, nut free, wheat free, vegetarian, reflux-safe, fat free — all these diets accommodate lentils.

There’s nothing more profound in my life than these tiny, life-giving legumes. That sounds silly, but it is true. When all meals sounded strange, lentils were a constant. This compilation of recipes is a love letter to lentils.

HONEY BAKED LENTILS

I found some variation of this recipe on the web many years ago. It is a dump-it-in-the-bowl-and-cook-it easy dinner, provided you can be home for 90 minutes while it cooked. I can hastily prepare the ingredients and throw it all in the oven. Half an hour before it’s done baking, I can make a pot of rice, and dinner is done. In a time when I often had to make the ingredients in order to assemble the recipe for dinner itself, this was a blessing indeed. *Dairy-free *Egg-free *Nut-free *Wheat-free (if you use tamari or coconut aminos not soy sauce) *Soy-free (if you use coconut aminos) *Reflux-safe *Fat-free (if you skip the olive oil)

Ingredients:

1 cup red lentils
2 cups water
2 tbsp honey
2 tbsp soysauce or tamari or, on a six-food-elimination-diet, coconut aminos
2 tbsp olive oil
1/2 tsp ginger
1 clove garlic
1 small onion
salt & pepper to taste
Optional: add chopped carrots, sweet potato, or squash and just a little more water.

Preparation:
Bake in a covered dish at 350 until tender (about an hour and a half). OR…dump it all in a crockpot on low for 3-5 hours.


TAMARIND LENTILS & CHICKPEAS

I found the basic version of this recipe in Veganomicon, the amazing cookbook by Isa Chandra Moscowitz and Terry Hope Romero. I adapted it so that it would accommodate both a reflux-safe diet (no tomatoes, which is why I substituted pureed pumpkin) and a day when we were low on lentils (the horror!), so I added chickpeas. In an often otherwise-low-fat, low-protein diet, this recipe has lots of both. Unlike the recipe above, this is what my mother often calls a “potchke” recipe — lots of fussing, many pots, kind of time-consuming. It is outrageously delicious. Serve it over basmati rice.
*Dairy-free *Egg-free *Nut-free *Wheat-free (check your garam masala to be sure) *Soy-free *Reflux-safe

Ingredients:
3 tbsp coconut oil
3 cloves garlic, minced
1 tsp ginger
1 large onion, diced
1 tsp garam masala
1/2 tsp cumin
Pinch of cayenne
1/2 cup dried lentils
1/2 cup canned chickpeas
2 cups veg broth
2 tsp tamarind paste (available in most health food or Indian food stores)
1 tbsp maple syrup
2 tbsp pureed pumpkin (from a can is fine…possibly pureed sweet potato would work too)
1/2 tsp salt

Preparation:
Melt coconut oil in heavy-bottomed pot with a lid. Add garlic and ginger and let sizzle for 30 seconds. Add the onion and fry until translucent and soft. Stir in garam masala, cumin, and cayenne, and stir for another 30 seconds until the spices smell fragrant. Add lentils, chickpeas, and veg broth, increase heat to high, and bring the mixture to a boil. Stir and lower heat to medium-low. Partially cover and simmer for 25 minutes, stirring occasionally, until the lentils have absorbed all the liquid and are very tender. This will be very thick.

In a small cup or bowl, combine tamarind, maple syrup, tomato paste/pumpkin, and salt. Scrape all of this mixture into the lentils and stir completely to dissolve the flavorings. Simmer for another 4-6 minutes and serve immediately.


GREEK LENTIL STEW

This is a staple dish of my whole community now, after my friend Clare began making it for every potluck. It’s cheap, it’s tasty, it’s open to endless variations, and almost anyone can make it. The smell of the bay leaf is a signal to my younger daughter that it’s cooking and also that she can count on several days of it in their lunches. A big batch of basmati rice rounds this out. This recipe initially came from Laurel’s Kitchen, an iconic cookbook.
*Dairy-free *Egg-free *Nut-free *Wheat-free (check your garam masala to be sure) *Soy-free *Reflux-safe (if you omit the tomatoes *Fat-free (if you omit the olive oil)

Ingredients
2 cups dry green/tan lentils
8 cups water
1/2 onion, chopped
1 small carrot, chopped (sometimes I add more because I love them)
1 celery stalk, chopped
1 small potato, chopped
2 tbsp olive oil
2 bay leaves
1 to 2 tsp salt
1 can or about 2 cups chopped tomatoes (omit for a reflux-safe diet)

Preparation:
Put everything except the tomatoes in the pot and cook until the lentils are soft, about an hour. Add the tomatoes for about 3 minutes. Mix, cook for a few minutes more, eat over basmati rice.


Finally, a lentil story:

Once, when I was sick with the flu and strep throat at the same time, a friend showed up at my door, unbidden, with a steaming glass dish of lentil stew. Gratitude is not a powerful enough word for what I felt as I spooned this concoction into my mouth from under a mountain of blankets on my couch. It was sweet but not cloying, savory and soft and tart all at once. I’ve come to associate the taste of it with the feeling of being cared-for without asking. Few people mother the mothers when their own mothers are far away. This dish made me remember the soup I ate as a sick child — not in flavor, but in sentiment and healing properties.

It was the Stewed Lentils & Tomatoes recipe from Smitten Kitchen, who in turn adapted it from The Barefoot Contessa at Home. I have never made it as well as my friend did — but it’s still fantastic. *Dairy-free *Egg-free *Nut-free *Wheat-free *Soy-free *Fat-free (if you omit the olive oil)

Lentils are little tiny round magic-beans to me. Thank you, lentils!

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Practicalities of the Six Food Elimination Diet

snackI never wanted to write a recipe blog.

Now I feel that I have an obligation to share the practical, actionable things I could do to make tolerable the previously-unthinkable diet my daughter had to endure during the summer and early fall of 2010. As I say that, I am assaulted in my mind by the knowledge that right this moment, mothers are at their stoves faced with the dilemna of how to make a meal out of rice, bananas, and apples — not because they didn’t make it to the store or because they’re low on money, but because those are the only foods their child is able to eat without serious illness. Eosinophilic esophagitis can — and sometimes does — rob families of the very basic ingredients of any normal meal.

I write this knowing that to call it hard is to make it relative to a normal diet — and in that case, it really was hard. In relation to a diet with even more restrictions, it was easy. Relative to the fat-free diet Sammi would need to follow four years later, it was also easy. In the moment, however, for us, and for other families managing it after an unrestricted diet, it was daunting. We were given a packet of information from the gastroenterology practice that assumed, for one thing, that we ate meat, which we did not and which Sammi’s doctor did not want us to begin doing, lest we contaminate the experiment of this elimination diet entirely. So we started with the foods she could eat, and quickly learned which of the newly forbidden foods (dairy, egg, soy, nuts, and wheat) we could substitute with analogous items on her “yes” list.

One day, tired of using recipes to make the ingredients I would use in other recipes (imagine a precise blend of flours to make a gluten-free flour blend, or the chemistry experiments I did to make something that would approximate a matzo ball), I threw a handful of finger foods on a platter in the living room and told my kids that it was lunch. Hearts of palm, baby corn, olives, cubed soy-free nut-free gluten-free vegan cheese, dried plaintain, and rice crackers. It bought me an hour before I had to start conjuring dinner out of vegetables and rice, again.

And it was hard.

It was never not-hard.

I didn’t want to write a recipe blog, but it was exceedingly difficult finding recipes that worked without fish, dairy, egg, soy, nuts, and wheat — a diet also known as the “six food elimination diet” because it also forbids fish/shellfish (something we didn’t have to test, since she’d never eaten either of those foods). The best things we discovered during that time were soups and rice & bean dishes, and also the Easy Whole Grain Flatbread (using any flour — we liked it with chickpea flour) by Mark Bittman. You can also find some links to products we could use on my Food That Helped page. We were not thrilled about adding junk foods with artificial flavors and colors to Sammi’s diet, but there was so little we could give her that qualified as a treat — and precious little that didn’t make her feel freakish among her new friends in kindergarten. If a packet of Betty Crocker Fruit Snacks would help, we bought them.

If you have come across this page because your child is on a restricted diet, the steps you need to take to determine whether a packaged product is safe for him/her are:

  1. Check the ingredients. Read them at least twice, checking for derivatives of the off-limits food, too.
  2. Check below the ingredients for a statement about shared equipment and/or facilities with your off-limits item. Sammi was allowed to eat products made in the same facility with her forbidden foods, but not products made on shared equipment with those forbidden foods. Find out what your doctor recommends.
  3. If there is no “shared equipment/shared facility” listing on your product, or if what your child is restricting is not one of the top-eight allergens (wheat, dairy, egg, soy, peanuts, tree nuts, shellfish, regular fish), call the manufacturer. Most food/beverage companies now have a customer service person dedicated to allergy issues. You need to ask about the production facilities and the content of their “natural flavors” if they list any in their ingredients.

It is an exhausting experience. I got quicker at identifying foods we could use, and I came up with a handful of reasonable meals during that time, but it was nearly a full-time job. The most important meal that we created, with much trial and error, was a replacement for Sammi’s favorite food: macaroni and cheese.

It wasn’t the same, but it was close.

Six-food-elimination-diet people: hang in there.

Macaroni & Cheese, Sort Of

1 lb Tinkyada brand gluten-free noodles
3 cups Pacific brand oat milk
1 small onion, minced
1/2 tsp pepper 1/2 tsp dried thyme
1 bay leaf
4 tbsp Soy-Free Earth Balance margarine
3 tbsp brown rice flour
3 cups Daiya brand shredded cheddar cheese (or two packages Daiya cheddar “wedge”)

Cook the pasta until just before it’s done. Drain quickly. Work fast.

While it’s cooking, melt the soy-free earth balance in a saucepan. Add the brown rice flour and mix well, then slowly add the milk and onions, whisking all the time. Add the bay leaf. Cook until thickened a little — maybe five minutes. Remove the bay leaf. Add the cheese, stirring until melted.

Add the cooked, drained pasta to the cheese sauce in the saucepan and mix together. Pour into a lightly-greased casserole dish and broil for 2-4 minutes, until the top is browned.

 

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