Summary:
The results are in: Sam's diagnosis of Celiac Disease back in September transformed everything about the way our family manages food. After four months of living gluten-free, we have figured out how to cook anything at home, but restaurants, grocery stores and travelling are still only nominally tolerable. The corridor of wheat (a.k.a. AIsle Six) at the local Met Food brings out near panic for me – so while I am breathing into a bag in the grocery store, Sam cheerfully tosses food into the cart conscientiously asking “Is this gluten-free?” about each item. We have made all of the appropriate adjustments to our pantry, met with nutritionists, and armed ourselves with knowledge (and cookbooks), but truthfully, Jon and I are both still really pissed off.
Management: Phase Out of the Amber Waves
The last few months have encouraged me to question whether wheat is a product that even needs to be replaced. This iconic crop is in everything - it appears on our currency and in our national anthem. It is inextricably connected to our economy and environment and it is a staple of the American diet. Living a wheat-free existence, despite the growth of the “gluten-free movement,” is a real cultural departure in this country. While I harbor serious affection for many gluten containing foods, from a nutrition perspective I think I am OK with phasing it out. Maize and rice share the stage with wheat as the key crops that feed the planet and this new diet has really forced us to examine the pros and cons of each of these. There are many available options, but for a price.
Financial Results of the Quarter:
Replacing regular products with gluten-free alternatives comes at a serious premium. The costs aren’t double – they are actually about four to six times as expensive. A 50lb bag of wheat flour costs approximately $15. The same amount of a comparable gluten-free flour ranges from $66 for certified oat flour to over $200 for sprouted brown rice flour. That cost is carried over into every product. Despite this, in our quest to continue feeding our children healthy food that they will eat, we have swallowed the $3 / per frozen organic gluten-free chicken nugget cost and made some changes in our house.
Acquisitions:
Our Sunday tradition of pancakes, waffles
or muffins is still going strong thanks to Pamela’s Mixes (pictured above), Bob’s Red Mill and the Gluten Free Pantry. Breakfast cereal (EnviroKids, Chex, Barbara’s) and oatmeal (GlutenFreeda and Bob’s Red Mill) were easy replacements. For me, the widely available rice (Tinkyada) pasta and my preferred corn pasta (rustichella d’abruzzo or Bi Alimenta from Italy) don’t really cut it, but the kids like it (and I don’t mind that they eat less of it than they used to). Our other major replacement staple is Applegate Farms and Bell & Evans gluten-free chicken nuggets. In the category of sweets, there are an abundance of products: the KinnikKinnick chocolate donuts are our favorites. Sam compared them to the famous Downyflake donut shop in Nantucket which is as good of a donut endorsement as I can imagine. Other standouts include Jules’ organic ice cream sandwiches, anything from My Dad’s Cookies, and Namaste brownies. To my surprise, the Betty Crocker white cake mix is really good for cupcakes, but I am always seeking out new additions and I recently learned that Stonewall Kitchen has an entire gluten-free baking line. I received my first shipment of chocolate chunk cookie mix, Vanilla cupcake, and Chocolate Brownie mix today. There is no need to give up ice cream cones as the Edward and Sons gluten-free sugar cones are perfect.
Oh Dough!
Unfortunately, Sam isn't a fan of certain types of rice flour that are in many of the gluten-free dough based products. We tried making pizza at home several times without much success. With the first batch, Talia took one bite and said, “Mommy, this is NOT my taste.” It wasn’t my taste either. Risotteria, a wonderful gluten-free restaurant in Greenwich Village, sells a dough mix which we bought, but haven’t yet tried so hopefully that will yield a good result. We are fortunate to have a few pizza places locally in Brooklyn (BenCotto’s and Front Street Pizza), but I also found a company called Still Riding Pizza http://www.stillridingpizza.com/ that will ship their dough to your local pizza parlor and come educate them about how to safely prepare it.
Bread is very difficult to replicate. Gluten-free bread just doesn’t have that springiness… that pliability…that GLUTEN that makes it so elastic and good. I did find one type of bread that I would eat voluntarily called Food for All, made up in Ulster County using chick pea flour (The people who make it run the wonderful gluten-free Soul Dog Restaurant in Poughkepsie). It's not sold in the City yet so for now, Udi’s is passable if you toast it and is available in many stores. Canyon bakehouse is great for hamburger buns and seven grain bread, but is not as widely available. Forget bagels – a gluten-free bagel is just a waste of carbs, but if you really must then Glutino and Udi's both have a product. I should mention that many of the replacement products have more carbs and calories than the wheat based equivalent so they aren’t always the best choices from a diabetes perspective.
The net issue with replacing any or all of these products is really more about the loss of experiences than about nutrition. The loss of spontaneity when it comes to food is a drag and I lament that Sam will always have to think ahead before he leaves the house. Especially when travelling I always loved happening upon local food. The first time Jon and I went to Paris, we worked up an appetite on a long walk up to Sacré Coeur in Montmartre. When we got to the village centre, a street artist (recognizing us for the novice tourists we were) made a cutout of our silhouettes while we grabbed some baguettes with ham and butter and ate them on a bench. The smell and taste of that bread is so ingrained in my memory. There is nothing better than a warm loaf of French bread. I don’t even want to think about that ham and butter on a piece of bread made from rice, chickpeas or tapioca.
List of Material Events for the Quarter: Thanksgiving, Christmas, and Eternal Passover (without the matzo)According to Jewish tradition, on the days leading up to Passover families rid their homes of all traces of Chametz or leavening that is fermented in the following five grains – wheat, rye, barley, spelt, and oats. After our first trip to the Celiac Clinic at Columbia University, that is just what we did - we went home and turned our pantry inside out to remove any food that contained those five grains from our possession. The nutritionist recommended that we purchase a new toaster and replace our colanders for fear of contamination, but we felt that was overboard and that we could adequately clean the kitchenware and use foil in the toaster going forward. We wanted our house to be a place where Sam never had to ask if something was gluten-free and so far we have been able to uphold that standard.
Leaving the house is something else entirely. The extra bag we usually pack for diabetes supplies now has a companion bag filled with gluten-free food and alternative flours (see below).
Our first attempt at travel was for Thanksgiving. My sister-in-law, Eleonore, is a gracious host and wonderful cook and was supportive of the complex dietary needs of our group (vegetarian, diabetic, gluten-free). She prepared buckwheat crepes (there is no gluten in buckwheat despite the name) for the kids as a hors d’oeuvre replacing the blini’s we used to make in years past and was open to using our substitute flours. In addition to the traditional menu, we had a fantastic gluten-free Swiss chard and sweet potato gratin, gluten-free cornbread stuffing, and Jon baked several gluten-free pies (see below).
For Hanukah, we used a flour free potato latke recipe that we found online (from the Beverly Hills Hotel) with great success. Christmas dinner included a vegetarian gluten-free pot pie and homemade chocolate pudding (both adapted from the Barefoot Contessa Parties! book). We adapted Jon’s Nana’s sugar cookie recipe (top photo)to make Christmas cookies, but we skipped making our annual gingerbread house, sweet rolls, and the Bûche de Noël from gluten-free baking burn-out. We also had what we are calling the Christmas miracle: Sam tried Salmon and loved it - opening up a whole new world of protein based meals to us.
Our cooking success continued with a phenomenal gluten-free soufflé on New Year’s Eve and the piece d’ resistance: Talia’s 4th birthday tea party. The girls had gluten-free scones, marzipan and tea sandwiches filled with Nutella, American cheese, PB&J, and cucumber on Udi’s bread. The menu also included a heart shaped gluten-free cake with crown candles. For Sam’s superhero rock climbing party the following week we ordered gluten-free pizza to be delivered to the gym where the kids were flying across zip lines and scaling the walls. The pizza wasn’t a hit with the kids. One of the parents overheard Sam say, “I don’t like the pizza either, but I know I should eat it so I don’t get low and plus my mom got it for me.” He also had a gluten-free chocolate SuperSam cake.
Despite all this effort, we still make mistakes. I mindlessly added beer into the chili I was making during the football play-offs. As soon as I did it, I realized my mistake and felt compelled to get in my car and get new ingredients to make a separate pot of chili for Sam. I was extremely upset with myself, but I just hadn’t thought of beer as containing gluten because it’s not a food that I generally associate with Sam. Sam didn’t end up eating the chili anyway, but I was glad that I made it for him.
There is no way we can permanently protect him from the psychology of denial. He has to eat a different snack at school and celebrations are a challenge, but many people have shown us great kindness in trying to include him. Sam was so excited for the Chinese New Year celebration at his school because he remembered the dumplings from last year. Unfortunately, the dumplings were not gluten-free, but one of the parents made an alternative dish for him. My sister-in-law, Michelle made the top layer of her daughter’s birthday cake gluten-free. At another party, they ordered grilled chicken just for him. When Sam goes to a birthday party now, we make gluten-free cupcakes and bring them along.
Restaurants are touch and go. They are either accommodating or disastrous. We had a birthday celebration for my mom at the Depuy Canal House in High Falls, NY. When I couldn’t find a single thing on the menu that didn’t contain wheat, I asked the chef to cook pasta that we brought from home. They made a beautiful sauce for the kids and served it with a plate of fruit and cheese. In another restaurant, the chef made Sam French onion soup without the bread (but with the cheese). Lilly and Lou's on East 61st Street has an excellent gluten-free chinese menu. To see Sam eat dumplings again was a joy. We also discovered that the "Best Chocolate Cake in the World" located in DUMBO is also gluten-free and they ship anywhere. These are the good stories, but I have a few bad ones too, including a restaurant that adds flour to their rice, restaurants that advertise that they are gluten-free (only to get there and see one crumbly cookie as the big gluten-free item)and the lodge at the ski mountain that only offered battered foods, pizza and baked goods. At the mountain, my kids ate clementines and yogurt out of our bag while all the other kids were eating cookies as big as their heads. I understand the convenience of the “children’s menu” but I really think that it does a great disservice to the health and palate of our kids. Having children eat only hot dogs, pizza, chicken nuggets or pasta in restaurants is not good thing –whether a child has diabetes and celiac like Sam or not.
Accomplishments of the Quarter:
We have all drastically changed the way we eat and we are trying to come to some level of acceptance. The high point: Sam, gracious and accepting as ever, asking me why Talia can’t have a muffin at a bakery “I mean it’s not like she has Celiac.” The low point: Watching Sam walk up to a proprietor of baked goods at a farmers market and asking, “Is any of this gluten-free” and then having him re-assure her that it was OK after she offered up a pity-filled apology. I guess the point of both of those anecdotes is that I believe Sam has adjusted well. At his first visit to the endocrinologist after a few months on the gluten-free diet he grew an inch and gained four pounds so we are lucky that he was diagnosed before he had any significant damage to his body. Future prospects are good… as long as I continue to carry my paper bag to the grocery store.
