Oh, the gluten

Well, as most of my maybe four readers know by now, our boys have celiac disease. Honestly this doesn't impact our lives all that much -- we eat very little processed food, I take daily snacks to school for Connor, and we have to be careful at other people's homes and playgroups to minimize exposure, but that's not that hard really. The only thing that is really hard is those times when you've been running frantically, working hard and the Domino's number would be JUST SO EASY. Restaurants are usually a nightmare and more stressful than just going ahead and eating at home. Some restaurants are offering gluten free items now, which is an awesome advancement -- 20 years ago, you got handed a bag of rice cakes and shunted out of the doctor's office and you were on your own. But that's only great if the restaurant can really maintain gluten free protocols.

We went out to eat this past Saturday at Boston's Pizza. They have a wide selection of gluten free pizza and we previously ate there without incident. Not this time. By 3 hours after eating, Timmy was rejecting food and crying hysterically. By 4 hours after, we had projectile vomiting. By eight hours later, we had bloody vomit. And by 12 hours after, we had exhausted parents, 15 loads of laundry, diarrhea, and a stinky exhausted dehydrated baby. The vomiting STILL hasn't stopped 48 hours later, though it's nowhere near initial levels. I turned a whale eye toward Connor -- as soon Timmy came down off the initial pain wave, Connor began and suffered from belly pain and diarrhea. He said "Aladdin's monster" was eating his tummy. :-( We ended up keeping him home today to avoid having an embarrassing and painful accident in front of the other children, not to mention the attendant behavioral issues.

While the baby snoozed between Vesuvius-like fits, I wrote a scathingly polite letter to Boston's about the issue. I was not happy as you can imagine. After two hours of broken sleep and finally stumbling through a shower to wash off various effluvients, I wrote yet another message this morning. I had called the local Boston's on Sunday and was blithely assured that the owner had been in after a "call from corporate" but Mr Schmuckatelli who answered the phone couldn't give me anything more, not even an apology. Here's what I wrote in the latest message:

I wrote to your company on Saturday night after my children were glutened in your restaurant. I just wanted to give an update on the full impact of haphazard gluten practices in your restaurant: my older son (4 years old) spent yesterday and last night on the couch with a heating pad on his stomach, alternating with long trips to the bathroom. My younger son (16 mo) was lucky enough to escape serious medical intervention this time but still required consultation with his pediatrician and didn't stop vomiting or the diarrhea attendant with a glutening for almost 24 hours. The last and only time he was glutened, Timothy required an emergency medevac to a VA pediatric hospital because he had experienced a prolapse in his bowel. We are very relieved that didn't happen this time. We had to keep my older son from preschool this morning in fear that he would have an embarrassing and distressing accident. We have eaten out a total of eight times since my children were diagnosed in May 2009, and almost all at your restaurant chain, here and in Anchorage. We had no reason not to trust that Boston's wouldn't let us down this time. I don't tell you all this to invoke pity or to threaten litigation; I say all this to let you know the full impact of what happened to us and the importance of gluten free dining protocols if you are going to advertise such a menu option. I hope that your corporation doesn't decide to limit or eliminate its menu as a result of our issues. 1 in 132 Americans, according to University of Maryland's recent study - making 2.2 million people potential gluten free customers - suffers from this sort of condition. But this isn't something to be cavalier about either. To a celiac, every bit of gluten is like arsenic -- the effect is remarkably similar on the gut and nervous system. The care taken to make sure none ends up in the food of a celiac must be the same. After all, I hardly think your kitchen staff would conclude blithely that a little bit of arsenic in the pan or sprinkled in the pizza toppings would be worth the risk to a customer.

I would appreciate some sort of response to my concerns. I contacted the restaurant upon their opening yesterday and was not entirely pleased with their response. The manager did say that the owner had been in after a "call from corporate" to discuss gluten free procedures, but no assurance of what improvements have been made/will be made was offered, nor was there any apology or amends offered for the distress and illness Connor and Timothy have suffered. I think a "call from corporate" would have gone a long way toward making me feel that Boston's heard and understood my well-founded distress.

Perhaps I am expecting too much, but I feel the distinct need to let our dissatisfaction and physical pain be registered as strongly as possible. If nothing else, please do remove these options from your menu so other parents aren't misled into trusting their children's health will be safe. Thank you for your time.

Well, I must have lit a fire at Boston's corporate office because the response WAS gratifying, and honestly should be modeled by more service-oriented corporations when a customer's complaint is registered. I was vastly impressed. I received a call from a Ms Wade in Dallas who reassured me that they were making inquiries and reviews of all their gf procedures at all their restaurants and had directly addressed the issue with the FAirbanks restaurant in particular. She offered their apologies and asked that we gave them another chance -- with a hollow laugh, I assured her we would most likely not be doing so any time soon. At least for as long as the carpet smelled this bad.

Later that afternoon I got a call from Mr Cervantes at the Fairbanks restaurant and he was hugely receptive and apologetic. During the course of a half hour conversation he reviewed their procedures, accepted two suggestions from me (dedicated cleaning supplies and server accountability) and listened patiently to my CD101 lecture. He offered to host our family for free whenever we'd like to come eat, but again...that's kind of like being offered a game of free Russian roulette (thanks Jen, that made me laugh).

I didn't address things so strongly in an attempt to bludgeon anyone with guilt, sue anyone, get "free stuff" or share the misery for the sake of doing so...though I admit, I would have happily passed the blood spewing baby off to a Boston's exec with very little compunction roundabout 4 am...I did it to be an ADVOCATE. Little known and recognized diseases like celiac disease will never gain mainstream acceptance or accommodation without calm and measured advocacy. Of course in any service oriented issue, without giving customer feedback the service in question will never improve. And when it's health related, it's no good to passively accept the situation or just shrug and say, "Well, we'll never eat there again." What good would that have done anyone besides ourselves?

Oh crap...I hear vomiting upstairs. Sigh. Oh, the gluten...

Okay, just a few more...

That boy is our last hope... There is another...



Connor got a few mom and dad and Nani presents when we got home. Ignore the party detritus...three adults vs 20 kids? We didn't stand a chance. We were all exhausted and blew off all but the most immediate stuff to rest tonight. He got a cool gaming system called Zippity from Nani and Pop.



Ahhh! Daddy bought a spring loaded light up light saber! I think the light saber count in the house is up to near double digits. I'm choking on testosterone fueled geekery!

Star Wars Birthday!

Connor asked for a Star Wars birthday and Charlie and I were determined to deliver, without a hefty price tag. Hmmm...tons of fun, Star Wars crazy and not a huge hit on the pocket book? It can be done.

First you need a supportive cast at home. Timmy likes to get us in the mood.


Then you spend a couple weeks frantically manufacturing Star Wars paraphernalia. I had a bunch of Charlie's old t-shirts, so I split them down the middle and mom hemmed them. I cut small belts out of brown felt, and voila - instant tiny Jedis. Charlie spent the same amount of time manufacturing light sabers out of pipe insulation, PVC and "duck" tape in bright colors. He put a small piece of PVC pipe in the handle and then did beautiful designs in tape to make them look great. They could whale on each other with impunity with a minimum of tears. I think they were the kids' favorite part of the party and we even had adults from other parties asking all sorts of questions about their construction so they could do the same thing.
Here's Connor modeling his costume and saber before guests arrive!

We held the party at the base community center. This place rocks like you read about, with slides and an infant play area. For a small fee, you can rent a party room and a bouncy castle in the main play area. This excites the kids so much, you really don't need to plan many activities. And even the considerable inconvenience of hauling lots of party stuff through the snow at 30 below sure beats having 20 bored preschoolers and toddlers in your house with every minute planned.

Timmy and daddy sliding!


Connor and his friend Haley playing light sabers in the party room.


Connor jumping with friends in the bouncy castle.


The party food was mostly snacks -- all gluten free of course, with a few completely egg and dairy free as well so Connor's good friend Owen could enjoy. He was so tickled that he had cupcakes, chex mix, popcorn and chips and dip he could eat. Mom and I made little cloth treat bags for everyone too with a few trinkets like space bouncy balls and glowing bracelets and some special birthday M&Ms mom sent. We splurged on a Darth Vader pinata filled with candy. The kids broke it open and Charlie ended up having to shake it to rain down the goodies -- you couldn't see his feet with the resulting shrieking feeding frenzy!

We opened presents shortly thereafter but cut it short once we realized everyone wanted the presents!

I made some gluten free chocolate cupcakes and some dairy, egg and gluten free cupcakes with vanilla dairy free icing and sprinkles. We decorated them with Darth Vader and storm trooper rings to decorate the cakes. We also got some sparkly black candles and let everyone blow them out to help Connor.

The kids then went off to play some more while we cleaned up. Everyone took a costume, balloons, treat bag and light saber home -- lots of laughs, very few tears and a very happy four year old!

Connor's 4 year old interview

I asked Connor a series of questions for marking his transition to 4, courtesy of my friend Melissa at Chasing Cheerios. Some of the answers are awfully cute...

I feel happy when...I play with cars and trucks.

I feel sad when...I bump my head.

I like to...toys.

My daddy is...coming.

My mommy is...very happy.

I love...Timmy.

My favorite color is...black.

I like to eat...bananas.

I like to play...at the playground.

My favorite toy is...a fire truck (could have fooled me) and a storm trooper.

It makes me happy when...I play with storm troopers.

It makes me sad when...I need batteries.

I feel frustrated when...new kids are there.

The best thing I do is...playing castle.

I'm excited about...uh...trees...uh, train...uh no, that's silly.

I like to go...in the airplane.

What's your favorite song? Santa Claus is coming to town

What's your favorite school activity? Work

What's the best part about being 4 years old? a party