Category Archives: esophagus

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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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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Delicious Compassion

Between the beginning of July and the end of September, 2010, our family ate a diet that was vegetarian, dairy-free, egg-free, soy-free, wheat-free, and nut-free. As part of the treatment protocol for eosinophilic esophagitis, the “six food elimination diet” was supposed to remove the worst potential allergens from my daughter Sammi’s system, hopefully healing her esophagus and giving us the chance to add the offenders back one at a time later until the real culprit was found. The full elimination portion of the diet was just plain awful.

While the rest of us could sneak off and have such luxuries as omelets and almonds and bagels, Sammi was living this diet 100% of the time. We did everything we could to make it palatable; we made elaborate fruit salads and learned to cook ridiculously complicated foods. We spent a lot of time at the farmer’s market, trying new produce. We went to the beach. Our friends and family circled the wagons and did what they could. In all of this, I can only really remember snapshots — the most powerful moments preserved in a visceral feeling of either dread or deep relief.

Snap. My friend Christine arriving at daycamp with her children and a pan of crispy rice treats made on parchment paper with gluten-free cereal. “I poured boiling water over my spatula,” she said. “And the pan was brand new, but I used parchment paper just in case.”

Snap. My mother-in-law coming to my house with four bags of groceries from her local health food store. She bustled in and told me, “I showed the owner the list of foods she couldn’t have and he spent an hour with me walking through the store. Read all these labels anyway, though, before you give them to her.”

Snap. All through the fall of her kindergarten year, Sammi’s best friend’s mom sent clementines or bananas when it was her turn to provide snack, knowing that those were the only things Sammi could eat that I didn’t send. “I could eat the same snack as everyone today, Mommy!”

cakeSnap. In the middle of all of it, Sammi turned five, and my sister-in-law, fresh from classes in cake decorating, came over to help me decorate the only thing I could use for a cake: crispy rice treats. Carefully, slowly, we referenced a photo of the backdrop on Sammi’s favorite tv show.

One of the strongest memories I have of that time, though, was the deep, deep compassion bestowed on us by an employee of the candy company Jelly Belly. As a special treat for our kids, their great-aunt had offered to take them on a tour of the Jelly Belly factory about an hour away from home. As luck would have it, Jelly Belly jellybeans are free of all the top eight allergens. I confirmed this on the phone before they left.

They had a wonderful time at Jelly Belly headquarters and came home with souvenirs and, unsurprisingly, mountains of jellybeans. It was a moment of normalcy in a totally abnormal summer. And then, I read the side of one of the bags of candy they’d eaten on the tour:

Produced on shared equipment with peanuts

I cannot overstate the panic I felt. Even though Sammi would not get sick from this, it meant that the previous four weeks of crazy diet had been in vain. This excursion fell nearly at the end of the first six-weeks of the diet, after which Sammi would have an endscopy and then be given permission to take a short break from restriction to go on a family trip we’d been planning for years. This cross-contamination debacle would force us to cancel that trip and start the six weeks of diet from zero.

I went into a tailspin, grasping at anything I could imagine. I called the Jelly Belly factory again, horrified and furious and devastated all at once. What happened after that is best described in this excerpt from the letter I sent to the Vice President of Marketing for Jelly Belly.

“…I made a frantic call to Jelly Belly to see if perhaps the bags had been mislabeled. Kit McCoy called me back right away and immediately set to work checking lot numbers, re-checking with the production facilities, and calling me several times that day to update me on her progress. While she did that, I steeled myself for the possibility that, because we may have contaminated my daughter’s system with peanuts, we would have to postpone her endoscopy and cancel a family vacation we had been planning for over a year. Our window of opportunity for making this decision was very narrow.

Imagine my relief when Kit contacted me that very day to give me the news that the bags of Jelly Bellies that my daughter had eaten were simply “old film” – the beans inside were produced without any offending allergens. Kit’s quick research saved us an additional month of restricted diet, the loss of our long-planned vacation, and tremendous heartache. She deserves your praise and any commendation you can give her!

I am sharing our story with allergy support groups, friends, and medical staff to praise your company’s consumer relations and commitment to quality and safety. We are so grateful. We will be eating Jelly Bellies – and insisting that family carefully read labels – forever!”

 

I don’t know anything about Kit McCoy. I don’t know if she understands what she did for us. I’ll say this: without Kit McCoy, and her compassion, we would have lost this moment, on our vacation three weeks later: cruise

And more than that, I would have lost time, faith, and so much energy on recreating what we’d done all over again. Kit McCoy, wherever you are: you gave us time. You gave us space. You gave us hope.

Thank you.

1000voices

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Summer Lunch, “Free”

For many mothers of school-aged children, suddenly having to create on-demand, in-the-moment lunches during the summer is a rude awakening after the school year’s relative ease in school-supplied lunch or the mindless morning drop of sandwich/chips/apple/cookie into the lunchbox. Because of the economic diversity of my town, I know that the added complication of having to stop a day in the middle to prepare a meal still pales in complexity to the added stress of not having anything with which to prepare that meal. Some 60% or more of the children in our neighborhood elementary school qualify for free or reduced-price school lunch. When the summer arrives, all of those parents lose a third of their child’s weekday allotment of sustenance.

I am extra aware of the heartbreak of this situation after the summer of my daughter Sammi’s diagnosis of eosinophilic esophagitis. To calm the raging white blood cells in her esophagus, a progressive elimination diet had been prescribed for her. From her already vegetarian diet, we had to remove dairy, soy, egg, nuts, and wheat, and any foods prepared on surfaces that touched those forbidden items. In early July of 2010, I pushed carts through the Whole Foods grocery store, then the local multi-ethnic grocery store, then a smaller health-food store, attempting to put together a palatable and nutritious set of meals for her and us, who would be journeying through it with her so she wouldn’t feel alone.

Here’s how it went: I picked up an item — say, a cracker, labeled “gluten free” and “vegan,” which covered the dairy, egg, and wheat portions of the restrictions. Scanning the ingredient list, I searched for the presence of nuts, quite a common replacement for wheat in many gluten-free products. Finding none, I read even more carefully for soy; since Sammi only had to avoid the protein and not the oil or starch, she could still eat a food that contained soy lecithin or soybean oil. In the first weeks, I would allow myself to get excited if my reading had lasted this long without finding an offender, only to be crushed when, at the end of the ingredient list, I found the poisonous statement that made me shove the box angrily back on the shelf: this product is produced on shared equipment with products containing dairy.

Or nuts.

Or egg.

The first week’s grocery excursions cost us over $400, which bought us such strange things as wide variety of gluten-free flours (chickpea, tapioca, brown rice), hemp milk, rice pasta, coconut yogurt. To their odd and unfamiliar ranks I discovered I could add some common, cheap, everyday items that fit our needs and, when I did, I nearly wept with joy despite their chemical makeup being nothing like our previous diet. Post Fruity Pebbles! Betty Crocker Fruit Snacks! Lays Stax Potato Chips! Even so, the price of the diet was staggering, both in direct cost for ingredients and in the time it me took to shop and cook.

One morning about a week into this overwhelming experiment, I found myself near tears trying to imagine a lunch that would be appetizing for my daughters and a child who ate with us three times a week while her mother was busy. Carefully, I spread sunflower seed butter on thin, dense slices of a strange brown bread that had met our criteria. I added fruit in the shape of a face. I spread potato chips — also fancy and unusual — around the edges.lunch

It was the best I could do. My children, having sat through the difficult conversations and understanding the expectations and the experimentation we’d all have to endure over the coming months, gamely picked up their lunch and gave it an exploratory nibble.

The visiting friend, however, was not nearly so accommodating. “Oh,” she said, looking at the plate with a sneer. “My mom should have told you. I only eat white bread.”

I wish I could write here that I was understanding. I wish I could write that I brought her into the kitchen and made her a PB&J on white bread. Unfortunately, there was no food in my kitchen that wasn’t safe for Sammi. I had spent an hour scheming and hoping to build that strange little plate. I lost my temper with that child, telling her she could eat it or go hungry, leaving my children to manage her disappointment and confusion. I walked out of the room, locked myself in the bathoom, and pressed my head into the tiled wall, panting with anger.

Now, years later, I regret my behavior largely because I realize one of the reasons that parent may have left her with us for the day was that she may have been one of those children left without school lunch — and as a result, perhaps without any lunch — in the summer. I think about our astronomical grocery bills during that phase of the diet and wonder what would happen to the children like her if they’d had Sammi’s diagnosis. What on earth would a parent on a limited income do with orders like the ones we were following? I shudder to think of it.

Sammi’s lunch was dairy-free, egg-free, nut-free, soy-free, and wheat-free, but it sure wasn’t cost-free.

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The Worst Terrible Advice

papersThis is the best era yet for the acquisition of information. No matter the strangeness of your request, a search engine can turn up something. In the years between my medically complicated child’s birth and her diagnosis with a rare inflammatory disorder, the internet became a phenomenal resource for medical information. The first thing I did after being handed the name for the condition — eosinophilic esophagitis — was to plug it, syllable by syllable, into a search engine.

This is a dangerous endeavor. There are multiple copies of the clinical information: the diagnostic criteria, the available treatments, the symptoms — and then there are the support groups and forums. I knew from previous small forays into research of her first diagnosis, cardiac in nature, that the people posting on the bulletin boards are largely the ones in desperate need of something. They need either sympathetic ears, advice from those more experienced, or recommendations for next steps when the first treatments have failed. The success stories — those who have tried a treatment, succeeded, and gone on with their lives — are not well-represented on disease forums. They don’t need anything. They have moved on, the disease or the procedure well into their past. Holding this perspective is crucial for the newly-diagnosed. For the most part, only those troubled by the issue remain on those forums.

That left one final category of search engine results: the foundations and non-profits.

For nearly every rare disease, a family foundation or group of patient families or medical research team has formed a charity. Funding research for cancer is relatively easy compared to funding research for something that affects only a tiny portion of the general population. These foundations are, literally, saving lives through hard volunteer work, fundraising, and advocacy. It was through one of these non-profits that I had my only one-on-one interaction with a parent of a child with eosinophilic esophagitis.

It was completely terrifying.

After posting on a Facebook group for the families of children with this disease, a parent heavily involved in one such foundation offered, via private message, to talk with me on the phone. I was struggling greatly with meal planning and also unable to see what life would be like for us in the long term. I was thrilled to be able to speak with someone in real time.

I explained to her, when she called, that my daughter had oddly not exhibited any of the typical symptoms of this disease except for the reflux-like sounds. She wasn’t vomiting regularly — in fact, she had never vomited — and though she was very small, she was not disproportionately thin. She didn’t have any food allergies. She didn’t have eczema. Maybe, I suggested, she would be one of the 90% of children for whom the culprit was just one or two foods that, once removed from her diet, would put the disease into remission.

I can still remember exactly where I sat in my dining room, cookbooks and menus and lists spread around me, when this woman said to me, “I wouldn’t count on that.”

I was surprised. She went on, “That 90% statistic is really exaggerated. Most of the kids I see in working with this non-profit start out that way, but eventually it gets worse. They lose more and more foods as they get older. Eventually they all end up on the formula.”

The formula she was describing is an elemental amino-acid based drink that provides nutrition for patients who can eat only a limited number of foods, a formula which tastes so vile that many of them choose to have it pumped directly into their stomachs through a gastromy tube. She described her own daughter’s path from diagnosis to her current diet, which was composed exclusively of the formula and five other foods, only one of them a protein. She spoke about the extremity of the path in which her daughter had carefully and scientifically added each food over years, a process which included many foods which “failed” the tests when they made her daughter sick. “This is how it goes,” she said. “I just don’t want you to get excited. That’s what happens to these kids.”

I asked her how her family functioned in these circumstances. Holidays? Family dinners? Travel?

“I eat a sandwich over the kitchen sink most nights,” she said, “so she doesn’t have to smell it.”

As far as I knew in that moment, she was describing my future. I knew doctors didn’t always listen to patients. Who should I believe? The mother of a patient with the disease who was also a leader in a non-profit dedicated to research, or a doctor who saw hundreds of these children in his practice? When that call ended, I had to leave my mess of papers and notes and walk quickly a few blocks to retrieve my daughters from day camp. I was shaking. How many more months would my life — already drastically changed by this new diet the doctor prescribed, eliminating dairy, egg, soy, nuts, wheat, and fish from our already-vegetarian diet — be able to include a family dinner? How many more afternoons at the farmers’ market, eating cherries in the sun, were left for us?

Later, I would learn that the woman to whom I spoke had a daughter with a far more severe case of this disease than most and, as such, had sought support and company from others in a similar situation. I would find, as the years went by, that my instinct was, as usual, correct; my daughter would pass food trials and never need that formula. When the standard treatment protocol works, the patients don’t often feel driven to form and work for disease-specific foundations.

But that day, I didn’t know that. That day, she shook the hope out of me.

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