As grumpy and disgruntled and downright irritable as I can get when it comes to gluten, I have to grudgingly admit that it isn’t the worst thing in the world. There are things that make dealing with celiac disease bearable and even enjoyable, and one of those things is this: Sarah.
Now, I don’t know if you have a Sarah in your life. (If not, I highly encourage you to find one, because they are AWESOME!) If you have one, then you will know exactly what I am talking about. So, what is a Sarah?
Well, Sarah is a friend of mine. (and NO, you cannot have mine….you will have to find your own!) When we were in the hospital with my daughter (the first in our family to get diagnosed with celiac disease), Sarah and her husband, Scott, and their son came down to visit. They brought things to help us pass the time, keep our daughter occupied and entertained, and food for us to eat. They spent time with us.
After we got out, they brought a gluten free meal to our house. In the years since, they have hosted numerous meals, from casual dinners to full-blown parties – and you want to know something? The entire meals at these events were gluten free. We were the only celiac people (that I know of) invited to these events, and yet everything except the beer was gluten free (and there were even some GF beers for me, if I was so inclined.)
It is here that I should mention that Sarah and Scott are foodies. They are excellent cooks and bakers, to the point where if it were financially feasible, I’m sure Scott would gladly become a chef (and all of mankind in proximity to his restaurant would benefit). I should also mention that they have a kitchen that they have been itching to remodel for a long time. I know they want more cabinet and counter-top space, and they would really, really love a dishwasher. So, when they make an entirely gluten-free meal, we aren’t talking about dumping a box of GF spaghetti in a pan and opening a jar of Prego. No, we are talking about elaborate, delicious, tasty, full-blown MEALS.
While I was drowning in GF overload, trying to process day-to-day GF living, Sarah was buying cookbooks, reading blogs and websites, and experimenting with flours in her kitchen. Scott was calling to find out in certain things were really gluten-free or if they were at all at risk for cross contamination. Can I stress that NO ONE in their family needs to be gluten free? Can I add that when we are not there, they eat gluten?
These are not people who are embracing a dietary change in their lifestyle for some fad, or for health reason, or because they saw a story about it in a magazine. These are people who have made space in their small kitchen to store gluten-free flours, made time to read gluten free cookbooks, and made elaborate gluten free meals solely because they care about my family.
Yes, Sarah (and Scott) have witnessed the panicky look on our faces when people are eating gluten around our daughter. They have seen our frustrations at trying to explain to restaurant workers about cross contamination. They have been with us on this roller coaster ride and instead of taking a step away, or dismissing us as being over-zealous, they have gone above and beyond to give us the ultimate gift.
No, I’m not talking about the awesome food they make (although truly, that is an awesome gift). I am talking about the peace of mind that comes from knowing that my daughter can run around and play at their house and not end up with Cheerio dust stuck to her fingers. I don’t have to hover over her, or hover around the appetizers in case someone touches something with a utensil that has touched gluten. I don’t have to worry that she or I are going to get sick after being there.
And even more than that peace of mind? They have given our daughter (and myself) the gift of normalcy. Tobe able to go somewhere and have such implicit trust in their understanding of the disease that I don’t even have to bring it up. To my fellow ceilacs out there, I ask you this: When is the last time you ate a meal outside of your home where you didn’t have to use any of the following words: celiac, gluten, cross-contamination, gloves, or flour? You might not even be able to remember such an occasion. Me? Why, it was just 2 weeks ago, when they hosted a dinner for 12.
When I hear celiac friends talk about how their extended families lack compassion and understanding of the disease and just don’t “get it”, I feel for them. I wish that their families would have a higher degree of empathy for what they are going through. And barring that, I hope that they have friends who make up for this shortcoming. And if they’re lucky enough, I hope that they have the ultimate alternative to this: I hope that they have a Sarah.
Today I was reminded of a time not that long ago, when I first heard of this thing called “celiac.” Another mom wrote about her son’s celiac disease, and how sad it was to see a certain picture of him from before his diagnosis. It immediately made me think back to when my daughter was younger, and how she was struggling with this disease long before we knew what it was.
My daughter was diagnosed with celiac disease when she was 22 months old. She hadn’t gained any weight in 6 months at this point. Foods that she previously ate were things she no longer would have anything to do with, and our pediatrician was telling us to smear cream cheese and peanut butter on crackers and feed her whatever she wanted just so she would eat. In the weeks leading up to her diagnosis, we were told to give her juice, even, just as a means of keeping weight on her. She was slowly ruling out things she would eat, and we didn’t know what to do.
She had skinny arms and legs, with a round tummy. It happened so gradually, I think we weren’t even aware of just how bad it was. When I look back on the photos of her from that time I want to cry. She is emaciated – her beautiful hair is thin, her arms and legs look like little sticks, but her tummy was incredibly distended. She is smiling in many pf the photos…she was such a happy little tyke! And that makes it all the worse, because she was starving to death, yet was still such an upbeat little soul.
I remember going in to the gastroenterologist’s office, where he took one look at her and told us he was checking her in at Children’s Hospital first thing in the morning. Suddenly everything was happening super fast. So, on Wednesday we checked in. They put a feeding tube in through her nose and down her throat to her stomach. It was a holiday weekend (Labor Day), so we were there for 5 days until they could do the endoscopy and biopsy. They were remodeling the hospital at that time, so we had roommates for a few days. When we would finally get her to sleep, the other child in the room would start crying, so none of us got much sleep. We did a lot of walking around our floor. Maeryn would sit in one of the wagons, or in one of the plastic kid’s cars, and my husband would push her while I pushed the metal stand that held her fluids. Lap after lap after lap, sometimes in figure 8’s. She would say “goodnight” to the fishies in the fish tank, or “hello” to the nurses….
I remember her little pleading voice crying for me, “Mommyyyyy!” when they would come to do blood tests, or take her temperature, or blood pressure, or if they needed to pull her NG tube out and put another one in through her nasal passage. It is remarkable how helpless you feel when your baby is crying for you, and there is nothing you can do except hold her afterward and rock her to sleep. The hospital itself was mixed for us. The room situation was tenuous…sometimes we ended up with roommates coming in at 1 in the morning, and the doctors doing rounds didn’t seem very helpful. On the other hand, the nurses (especially the nurses!!) and the GI were beyond phenomenal, and the playrooms on each floor were a god-send. I am so grateful to the companies that donated the funds and toys to keep each one stocked with clean, fun toys for all of the kids there. It is funny how you quickly learn to appreciate the small things in life and how they have the power to impact you in ways you never imagined.
Since they had not done the official endoscopy yet, we had to keep trying to get her to eat meals that contained gluten. Imagine that…you’re told that something is poisonous to your child, yet you have to keep feeding it to her….when she is refusing to eat anything at all.
The day of her endoscopy and biopsy we walked her down to the floor where the procedure would take place. I was pregnant at the time, so after the initial prep, my husband had to carry her the rest of the way for the procedure. She seemed fine until the door closed and she realized I wasn’t following behind her. I watched her through a small circular window as my husband, dressed in scrubs, took her step after step, farther away from me. Her little arms were reaching back and she was screaming for me. I sat in the waiting room, crying. When my husband came in, I confessed to feeling silly for crying – after all, many people in that waiting room were probably there for things that could not be as simply treated (more on that later perhaps, eh?). He confessed that it was torture having to hold her down while they put her under. He said he felt like she was so scared, and didn’t understand why he wasn’t getting her out of there, but was instead, holding her to the table. We both spent the rest of the time waiting and feeling miserable.
She got to watch TV at the hospital, something we hadn’t really let her do yet at home. It is here where I learned to embrace Elmo. Yes, the red monster who I had previously loathed for not being a part of my Sesame Street upbringing was now our salvation. Brent went down to Target and bought some Elmo DVDs so she could have something to watch and be distracted by when the actual show wasn’t on the TV in her room.
It made her happy. And that made us happy.
Her scope and biopsy proved that it was, indeed, celiac disease. We received a “pamphlet” about ROCK (Raising Our Celiac Kids) which was 49 pages long, and I used that packet like a pocket-bible for the next few months.
This post isn’t about learning how to cope with the diagnosis, or her follow up food-therapy so she could learn to eat again. It isn’t about the trials of having a feeding tube for a few months, the doctors who made the rounds, or the $28,000 hospital bill that accompanied them. No. This post is about always keeping close to my heart the image of my little girl. How something as inane as a protein found in food could threaten to take her away from me. I look at photos from “before” – a little stick figure with a big tummy, and then I look at her now – a healthy, thriving little girl, and it reminds me of how precarious things are in life, and makes me hold her a little closer. No matter what the sacrifice, and no matter how annoying and mad and sad this whole gluten nonsense makes me. When I look at her I know it is all worth while. All of it.
In the dictionary, Celiac is an adjective. In my life, it seems to be a noun.
Celiac (n.); wet blanket, killjoy, party pooper, spoilsport; known as such when put in social situations involving food (redundant: as all social situations involve food.) AKA: me.
There comes a time in every person’s life when you are invited to go to a co-worker’s house for dinner, or out to happy hour, or to a holiday party, or to grab lunch, or to watch ‘the game’ at someone’s house, or even to go to _________. (fill in any place you could go to, as I’m sure 99% of them have food involved.) It is at times such as these that I am reminded that my presence is a going to put a bit of a damper on the occasion. Not that my friends (family, colleagues, neighbors, kid’s friend’s parents, etc…) are rude enough to say such things, nor uncouth enough to even think them, but at some point when does a ‘casual’ get-together ever return to that state of existence in a celiac’s life?
The other night I was invited over to a friend’s house for a going-away party for a former colleague of mine. My friend had called to ask what kind of pizza I would want, as he was providing pizza as the main staple and was going to go to Pizza Luce and get a gluten free one especially for me. It was very thoughtful of him, not to mention expensive, and I so appreciated the effort. (so, on that note, don’t interpret this as any sort of indictment of my friend or his party – he and it were both lovely.) It just served as a reminder that once again I was the extra step in the party-planning process. The added expense. The added inconvenience.
Now, this occurring just once is no big deal. Everyone tries to be a good host by going above and beyond, but this is one of 2 scenarios that happen every single time I encounter a social situation that I am invited to. (the other scenario being, of course, that there is nothing there for me to eat, but that is for another time, eh?) I find myself constantly thinking, “Wow. What a pain in the a$$ I am. Would I invite me to a get-together if every time I had to worry about where I placed my bowl of nachos in relation to the cheese and crackers?”
And my wonderful friends (they are wonderful, by the way) go to extra lengths to try and make me not feel weird. Once while on a trip, a girlfriend refused to go and buy coffee in the morning because the only place nearby was a Dunkin’ Donuts. She claimed it was because she didn’t need coffee (I don’t drink coffee, so I didn’t have the urge at all.), but I know her. She LOVES coffee. She did it so I wouldn’t have to be surrounded by yummy looking gluten. I was touched. But also bummed. I felt like screaming, “Don’t change your lifestyle to accommodate this! I’d rather be a part of your life as a friend and have to witness other people eating gluten than not have to see people eating gluten because we don’t hang out as often as we once did.”
Now, our friendship doesn’t hang in the balance quite that dramatically, and I am so eternally grateful when friends are so very accommodating when they invite us over – it is peace of mind to say the least – but it makes me upset. It. It! This stupid thing that has changed me from being a normal person to “a celiac.” My friends don’t make me angry. This disease that forever makes me the perceived “picky eater” of the group makes me angry.
This past December I went to a holiday party with some colleagues that I used to office with. I was running a little late and hadn’t had time to call ahead to ask about gluten-free options, but I figured that since it was a very highly-rated restaurant, I’d be able to find something to eat. We were going for drinks and appetizers. I ended up eating one piece of cheese off of a cheese platter that was ordered before I got there, and even then that was risky, as I found out later that one of the pieces of cheese on the platter came wrapped around a breadstick. (sigh) After talking with the cocktail waitress about my options, I felt less than confident in her understanding and thus ended up having that solo piece of cheese and a single cocktail. The other designers went out to a second venue afterward, but I just headed home. I was hungry, but more than that, I felt isolated beyond belief. There I was, sitting in a group of seven women on a threesome of couches, in front of a fireplace in this very cool lounge, surrounded by tables of people, and I felt so alone. Oh, sure, I talked with the other women, and it was nice to catch up, but I felt oddly like I was at an aquarium….sitting watching the people on the other side of the glass instead of fish.
Celiac. Such a silly word, really. For most people it is an adjective, as in, “I have celiac disease.”
And me? Why, I was a noun.
But don’t forget: an adjective modifies a noun. So, now I don’t just have celiac…. I am a celiac.
Okay, so I shouldn’t get so excited about the inclusion of an additional fast-food chain into the small list of options I can grab a bite to eat at. If there is one benefit to being gluten-free, it is that you are forced NOT to eat a bunch of processed crap. Having said that however, I have a confession to make: I AM excited.
I am excited to the point of giddy delirium, THAT is how excited I am. Now, quickly, before the newness of this news wears off and rational behavior returns, I will share with you my train of thought upon hearing that the Subway sandwich shop in Duluth was going to be one of the trial locations for gluten-free sandwiches.
Oh. Oh! Wait! I can eat a SANDWICH!? In public?
It is at this point that I mentally envision myself in line at a Subway…picture the scene: I am waiting behind 3-4 people (a luxury, because usually I try to go to places in off-peak hours so as not to upset people when my meal takes longer – Chipotle, I’m talking to you, here), the sandwich gal is behind the counter making other people’s sandwiches. She turns to the dude in front of me, “What would you like on your sandwich?” He mumbles something about, “…extra pickles, lettuce, hold the mayo, blahblahblah…” His sandwich gets passed down the line, wrapped and bagged. Then it is my turn.
Now, mentally, this is where my dream glosses over the necessary “I need a gluten-free sandwich, please wash your hands, put on clean gloves, etc……” It is important and will have to be said in reality, but this is MY daydream, and in THIS version, that’s already been said. The lady turns to me, ” and what would you like on your sandwich?”
And I triumphantly declare, “BREAD!!! I would like BREAD on my sandwich!”
Now, even in my dream I can see that I am wearing a sloppy, silly grin on my face. Even visualizing the elevated dorkditude that I have risen to does not mar this elation I am feeling. I turn my head proudly, as though I just declared world peace among nations. The other patrons, luckily, don’t seem to think anything is amiss….even in my dream I auto-correct.
Funny how actually receiving and eating the sandwich isn’t a part of this fantasy (Is it because I am afraid it will taste like cardboard? Maybe. Is it because what I am actually excited about is an additional opportunity to act like a normal person again? I’ll leave that one to the reader to discern.)
It looks like a trip to Duluth might be in order. I hear it is lovely this time of year.
So, my husband (longtime Packer fan) decides to plan a trip for us to visit Green Bay over New Years with another couple. No problem. I’m a hardy Minnesotan gal, so I am confident that I possess enough layers of clothing to sit on a metal bench, wedged between thousands of green and gold parkas and still maintain circulation to my extremities. The rest is going to be a fun mini-vacation with friends, as we are leaving our respective children with grandparents. The details? Well, to be honest I wanted to be a bit of an ostrich on this, as I am tired of always having to think about calling every place ahead of time to ask about gluten, blahblahblah… If my kids were going, I’d be all over it, but as it was, I pondered packing enough beef sticks, Pirates Booty, and candy to make it through the bulk of our meals on the road.
Lucky for me, our friends are excellent trip planners. They called to inform me that Lambeau Field has a gluten free concession stand*. (more on that later) Now, despite my earlier “meal” that I had planned to bring, I usually try not to subsist on such crappy meals, HOWEVER, the thought of being able to go to a major sporting event and order a beer (Redbridge), a hot dog or chili-cheese dog (with BUN!), nachos with cheese, and a plethora of candy – ALL of this without worrying about cross contamination, well….I can’t even tell you how good it made me feel. Warm, fuzzy feelings (and this in the midst of a stadium being snowed on at the time.) Good thing the team was doing well…I would have looked immensely foolish bundled in green with a silly grin all over my face otherwise.
So, lest you think that this was my ONLY foray into a GF meal, here is what I also found:
In Green Bay: Curly’s (the bar in the stadium, where we ate the day before the game) can do some GF food, although be forewarned that they will also tell you about things that “have only a little bit of gluten in it”, so someone needs to educate them a bit further on that one, but I digress.) The burger (no bun) that I ended up getting was fine. Cheesecake Heaven – okay, I ONLY got a hot cocoa here, but after ordering, I discovered that there was a sheet of paper with 10-point font that had an entire GF menu on it. They also make GF cheesecake there, with no crust. (mental note to get that next time.)
In Sturgeon Bay: So, we spent the night at a B&B: The Inn at Cedar Crossing, celebrating New Year’s Eve at the restaurant downstairs. I had called ahead to see if the B&B could do a gluten free meal for me for breakfast (no sense in going if I can’t enjoy one of the “B”‘s), where I learned that they could not only accommodate, but that they have a regular GF menu. In addition, they had a special menu for that night (as it was New Year’s Eve, after all), so they had a special list of GF menu items, too. I had the duck. It was great! In the morning, I could choose off of their GF breakfast menu…I had the Eggs Benedict…it was okay, but if I had it to do over again, I’d get the frittatta.
In Appleton: On the way home after the game, we stopped by Appleton to meet some relatives for dinner. I learned there was a supper club that has a GF menu, but alas, it was Sunday, so they were closed (big bummer…I MISS a good midwestern supper club!). We did eat at UNO Chicago Grill – I know, a chain, but I must say, the pizza we ordered was awesome. It tasted like a normal (AKA: NOT GF) thin-crust pizza…only it WAS GF!
Back to Lambeau Field for a minute (remember that *?) So, here it is: I found that not only do they have one DEDICATED concession cart with all of the aforementioned GF goodies, they ALSO have 2 other locations in the stadium where you can get the GF snackies and nachos (no hot dogs there.) I ended up going to the dedicated one…here is what was awesome about it: 1. No lines. Every other place had lines at half-time. Not this one! 2. The 2 people staffing it were super friendly and awesome. 3. There was a BUN with my hot dog. And it tasted good. (of course, it was smothered in cheese….but I’m sure it would have been good with ketchup, too) 4. I saw so many parents with kids come up to get food…it made me feel so good to know that my daughter could go to a game with her dad some day and eat a hot dog just like a normal kid. Ah, the things others take for granted!
So, this is a post about trips to Wisconsin if you need to be gluten free…. there were SO MANY more options that I anticipated…I ended up not even opening a single bag of Pirate’s Booty.
One addendum to add: What did we find when googling things on the way home? A dedicated GF bakery in Madison called “Silly Yak.” (get it? Silly-yak = Celiac?? hahaha) I hope it wasn’t an old link, because I am going to hunt that place down next time we are in town. Gluten-free options are expanding people! 2012 is starting out great. Yay!