So, since the last time I posted here, I had been doing a lot of reading about celiac disease and about how it is inherited. I also discovered some information about how people are finding themselves suffering from health problems when ingesting wheat and gluten whereas they never have before. I even spoke to a new friend I met recently, who is in her thirties who said that she had been suffering from minor symptoms for years and suddenly, her symptoms became severe enough that she lost 20 pounds almost overnight and when they did a scope of her intestines, it showed almost no villi left in her intestines. To say that eating gluten can have life-threatening implications on some is not an overstatement in the least.
So, the more I read, the more I’m learning that there is something going on in the wheat/gluten world that is creating all this health damage. Nobody knows how or why. And I am certainly no doctor or nutrition expert. But my son’s pediatrician indicated that my son probably inherited his milk allergy from me and potentially the wheat allergy as well, from both me and his father.
I have suffered from some of the mild symptoms of gluten intolerance that have been listed on various sites (namely the dizzy spells, hormone imbalances, inflammation, borderline anemia and low energy) and with the support of the love of my life, decided to live like my son. And let me say that it is one thing to make sure your kid doesn’t eat things that will make him sick, but it certainly an eye-opener to try to live as a working/busy adult and follow the same lifestyle.
The first few days (even weeks) didn’t seem like a big deal to me. “I got this,” I said to myself. And I did. I was at least knowledgeable to know my GFDF world to know what I could or couldn’t order or eat. All I had to do was do what I do for my son: pack my lunch, be careful of ingredients, eat the safe stuff. Except, I’m not in the habit of it. And many mornings I’d rush off without grabbing anything. At that point, it kinda hit me how hard this is. I was hungry but I couldn’t just stop anywhere and get a hot biscuit and sausage sandwich, or a breakfast burrito, or an english muffin with egg, or anything, really. I had to get to work on time, so a stop at big grocery store was out of the question. Oh how I miss Wawa. At least they have veggie and fruit cups and a deli counter meats and even packages of boiled eggs. Not the TN Maapcos or the Thorntons or the Exxons or really, anything around here. It’s all southern food (hot dogs, hot sausages and other msg-laced horribleness). Right now, there just isn’t a market for boiled eggs and fruit cups at the stop n’ go stations. So, I was screwed.
I had a bag of tortilla chips at work that I snacked on. And some boxes of raisins that I brought with me. But, it’s not filling like a bagel is. Then, when my lunch hour finally came, I could run to a nearby Kroger to get things I could eat. Unfortunately, I discovered that the Lara bars and anything pre-packaged and allergy friendly was expired. I even ended up wasting $5 on a package of wholly guacamole that was one month past the expiration date. I ate some expired brown rice cakes one day (which I didn’t discover until after I ate them and didn’t feel so good). So, unless I wanted to eat just fresh produce and tortilla chips, my options were extremely limited. And it wasn’t just the Kroger here that had expired stuff, so did the walmart market. In both places, I had to bring this to the attention of management. They were kind and addressed it, but still, if there isn’t a high turnover for this stuff, it makes me weary of freshness. If only I could get the 15 million other items in the store… nope, not me, the oddball out there, trying to shop for food in places filled with allergenic foods and normal people.
So, I started looking at raw options because there was a bounty of fresh mustard greens and kale and broccoli and other popular southern produce. But… how easy is it to prepare a salad in a limited break room at work? Not at all. I got creative anyway and felt pretty okay with myself. I was having pre-washed, pre-cut broccoli with hummus a lot. And the frozen Amy’s meals have been a decent go to for something more substantial.
Still, after a couple of weeks of this, I got pretty tired of it. And with baseball season practice and games, I haven’t been home and cooking… so, not much in the way of leftovers to bring to work.
So, I tried getting delivery from a local restaurant where my boss has me order his food from all the time. They’ve gotten to know me a little but this time, I ordered for myself. And this is where I thought about what life is going to be like for my son when he gets older. I had to spend about 15 minutes on the phone with them explaining my food allergies and because I have a serious problem with the use of styrofoam, I added the request that they wrap my plain cooked burger in foil and put the lettuce, tomato and pickled beets in a plastic container. They were wonderfully nice to me but I know I was a serious pain in the ass. They had almost nothing on their menu of side items to go with my burger. I couldn’t get fries because they use the oil to fry breaded things. I couldn’t get the apples because they were sauteed in sugar and butter. Pretty much everything they had had either butter or breading in it. So, I ended up paying $8 plus tip for a plain patty that was way too small to satisfy me, a leaf of iceburg, a slice of tomato and a disappointingly small side of canned pickled beets. I ordered this for breakfast (instead of lunch) because I was so hungry. It was enough to get me through until lunch but gawd, was that a dismal moment. The craving for a full-bunned burger with the works was really starting to set in. Then I realized that my son hasn’t had that in well over a year and a half. Poor kid!
The challenges, of course, didn’t stop there. My love and I both work in downtown Nashville and while my lunch hour is so limited, we still try to meet for lunch. He had to return a book to the library and I agreed to meet him there so we could have lunch at the library cafe. When I got there, not only was the parking absolutely confusing (the garage is split in two sides) but the cafe was a french bakery style place. There was nothing for me to eat there. Nothing but a small cup of roasted veggies. I couldn’t tell if it had been prepared with butter or not. Looked like an olive oil marinade though. But, if I were my son all grown up and having to do this, I’d have to ask one of the jaded hipster employees about the ingredients. I was in a crap mood and decided to just eat it. My now-very-limited diet was testing my love’s patience as well. But, he is a good sport, and patient. I watched him eat a delicious herb roll. I then thought about all the times that I ordered something not-so-fun for my kid, like the time we went to a pizzeria and they gave him some hamburger topping with a bit of tomato sauce and we sat there and ate the delicious pizza in front of him. My kid has been such a good sport about dealing with the limitations but … have I been kinda rude to him? Taking him along with me to out-to-eat places where he can order maybe one somewhat unappetizing side off of the menu while the whole menu was available to us to enjoy? What a sad thought. It made me cry a little bit. It made me realize that this life really makes you feel left out. Everyone is having fun and you can’t. Everyone can eat what is cooked, but you have to offend the cook to stay healthy. Your diet becomes a topic of sympathy, where it makes other people feel uncomfortable to deal with you when it comes to food.
I quickly learned that social and public dining was more miserable than dining at home. Dining at home has become our place of freedom and respite, where we can melt dairy-free chocolate chips (that I found FRESH at a nicer Kroger) and stir in some gluten-free rice krispies or nuts or dried cherries or marshmallows. Our home is where I make asian, thai, indian, italian and american cuisine that is SAFE. Safe from us being buttheads to other cooks and safe from feeling like outsiders to the world around us. Here is a picture of our wonderful Easter Supper of Roasted Pork , Sweet Potatoes, Spring Rolls, Pinapple Salsa, and Chocolate Marshmallow Bark:
Still, we still have to eat out there in the world. I started getting a bit better about making sure I made extra rice and chicken and yummy things to take to work. But again, I got busier and I stopped planning and making food. Work days became more and more stressful, commute was getting longer, and I would come home and not want to cook. So, this is another CON to having food allergies. I have a lot of cooking ingredients and just about every GF flour that can be purchased in my pantry. But at 7 pm and not a single desire to dirty a pan or wait more than 15 minutes to eat, I was envious of all the families in the world eating sandwiches or heating up a frozen pizza in the oven. So, not only do we have to plan and prepare more lunches, we have to plan and prepare for nights that I just don’t have it in me to cook. I think I ended up drinking wine and eating tortilla chips and sardines that night. My love graciously ate it with me. My kid was fine with a bowl of his chocolate GF krispie cereal and almond milk. So, we managed, but… a nice sandwich would have been great.
One night, we attempted to order chinese food. I thought that would be safe. Even though they put soy sauce and butter in almost all of their stir fries and sauces (soy sauce = gluten), I could still get steamed plain food. I tried getting steamed chicken and cashews and the very confused staff delivered breaded chicken instead. I ended up eating it because my love paid for it and he was exercising extreme patience with our lack of food options. I didn’t want to not eat perfectly good food, either. I was frustrated though, because this meal was essentially going to turn back the clock and all the weeks I worked on avoiding gluten to help heal my gut. Again, I thought about my son and how he might feel in the same situation – having only rice to eat because they brought breaded chicken and not steamed. He wouldn’t have had a choice to just eat what was brought. “Man,” I thought, “this sucks way worse for him still because I won’t get sick from this. He will.” It was clear that home-cooking was still better, by far, in both flavor and options. I mean, is ordering steamed chicken and rice even worth it? With the time we waited for it, I could have just made scrambled eggs that tasted better.
The last, and most note-worthy challenge was having recently attended a company seminar at a hotel conference where the lunch was provided by the employer. The only thing I could eat on that buffet line was some iceburg lettuce and canned black olives. EVERYTHING on that line was prepared with flour, breading or butter. Even the roasted potatoes were soaked in butter.
So, because I had to be back by a certain time, I rushed out to my car and drove to the nearest place that might have safe food, or where they could accomodate me quickly. I tried a Buffalo Wild Wings thinking it was more of a fast food place and discovered that it was a sit down slow restaurant. While they seemed willing to accomodate my dietary needs, they weren’t interested in helping me get back to the seminar on time. Luckily, there was a sushi place around the corner. Oh, the slow drivers tested my patience beyond my imagining but I got there. For Bowling Green, KY, it wasn’t a bad sushi place at all and they QUICKLY prepared two cucumber rolls for me. I got them, ran out to my car and devoured them as I drove back to the seminar. It was no hearty roasted chicken and potatoes meal (which I would have loved after picking on tortilla chips, raisins and a banana for the morning), but at least I wasn’t hungry anymore.
Again, wondering how my son is going to manage his work life, he’s going to have to be prepared for moments like this. And not do what I just did. I missed out on networking with fellow colleagues. I missed out on an opportunity to build professional relationships to chase down allergy friendly food. And did I hurt others’ opinions of me by disappearing for lunch? Did I seem like a really picky diva because I wouldn’t eat what they served and they don’t know why? Maybe.
And this is the life my son faces… unless the world becomes a more food allergy friendly place for him.
And where does all of this lead us? To a place of wanting to give up and be a part of the world. Two days ago, I was standing in line at Wendy’s because (yet again), I did not pack a lunch for myself in my quest to be on time for work. As I stood there and thought about how many times I have ordered the chili in the past few and didn’t want another damn chili, my mouth watered as I watched burger after burger being ordered and eaten by other patrons. Big cartons of delicious french fries. And again.. the burger… with the juicy pickles and lettuce and tomatoes and ketchup and mayo on a soft roll…
It was like the words that came out of my mouth magically switched from chili to burger. I sat down, I ate it, and I felt happy and good and satisfied.
Except, I also felt like the world’s worst example of a mother trying to understand the world from her son’s perspective. I failed. I gave up. If I had done this right, I would have ordered another chili and would have tried not to think about all those delicious burgers on soft rolls. And maybe, when feeling like that, I just would have left Wendy’s. But, nothing around Wendy’s sounded appetizing either. I was getting tired of the Raw Bar and Soy Latte from Starbucks. I was weary of the three varieties of Amy’s meals from Kroger. I was tired of having the sardines and chips that I had on hand from ALDI. I was tired of not being able to just go out to eat and enjoy life.
I know that, right now, my child knows that he has me and my love as his personal food preparation specialists. He knows I can turn anything he might get outside the home and make a version of it that is safe to eat inside the home. (I really need to post the cheesy mac n’ beef recipe that he loved). But I needed to live life like he does so that I can prepare him for his future. And the word “prepared” is going to have to be a real big thing for him to focus on. What I’ve learned is that living this lifestyle is VERY hard when unprepared. Sitting in an office, waiting two more hours for lunch and nothing is available to eat or to order in. It sucks. He can’t do to himself what I just did. He is going to have to spend $7 on gluten free bread and another $10 on casein free lunch meat and get a few cool-looking lunch bags to have with him at all times. This sucks, but he doesn’t have a choice. He doesn’t have the option to give in and have a burger. He can’t just eat something and risk his health to keep from feeling like a major burden to anyone else. He can’t fail.
What I’ve learned: Living like this really sucks more than I thought it did. And the sooner he can find way to make it suck less, the better. I think getting a cake ball maker is in order today. Thanks to this blog I discovered today and this Mom who talks about why it is so important to do some extra wonderful things for those living with food allerges: http://www.amazingandatopic.com/2011/10/allergy-free-cake-pops.html THANK YOU AMAZING AND ATOPIC for this inspiration! And…
CAKE POP READY!!!