Leave the Brie, Take the Bulgogi

I apologize for butchering this timeless movie quote for the purposes of this post title. But it just popped into my brain and I was just so tickled with it, I could not let it go.

The point is, we received some really great news recently regarding Ollie’s dietary restrictions and felt compelled to share it.

The Galactosemia Foundation Task Force has updated the dietary restrictions for classical galactosemia. While Oliver still cannot consume most dairy products, with the exception of a few cheeses that are considered acceptable, fermented soy products have now made their way into a new “Foods used in moderation” category which means he can have some of those foods.

Fermented soy includes soy sauce, tempeh, and miso. For Korean cooking, this would also include gochujang and doenjang, two staples in many of our favorite dishes.

Most every person I have talked to for the first time about Oliver’s galactosemia has the same response when it comes to his diet: “I could never live without cheese. I just love it so much.” And, while there are plenty of meals and dishes that I do love that contain cheese, I cannot say I miss it very much at all. Just like store-bought pastries or ice cream cones on a summer day, not having it as part of our diets is inconvenient, but not something truly crave-worthy. Of course, it helps that we are able to cook with aged parmesan and aged cheddar, so our lives need not be completely cheese free.

But for this family (my caucasian husband included), Korean food and cooking is and has always been a big part of our lives. Faced with the prospect that Oliver would never be able to partake in many of the dishes I grew up on, the weight of the loss of that cultural connection for him was so much heavier than I could have known.

In the grand scheme of things, having or not having an ingredient be a part of our diet is not the worst thing in the world. There are plenty of families and children dealing with far worse predicaments and life circumstances. But still, receiving the news that fermented soy is acceptable in limited quantities for our boy, we could not help but feel a real sense of celebration.

When one of Oliver’s dietitians emailed us last week to give us the news, she knew how excited we would be, too. (Below is the newly revised list!) We had been talking about this particular missing part of our diet for many months, and even though they had an inkling this move was coming, we did not receive the official news until last week. Maybe it seems like a minor victory to most, but for us it opens up a new connection to his family and history that was missing before. And that is a true gift.

Dietary Restrictions Update for Classical Galactosemia - July 2017

Dietary Restrictions Update for Classical Galactosemia – July 2017

Footloose and Dairy-Free

When I try to explain to people what having galactosemia means for Oliver, especially for the first time, one of the easier aspects to explain is that he is required to have a restricted diet and, in particular, can not have any dairy products. If this were the CliffsNotes explanation of galactosemia, you could file this under the Major Themes section. It’s one of the easier aspects for others to understand considering the number of children with food allergies and other aversions these days.almond-milk

Something else we find ourselves explaining is the fact that John and I decided to also go dairy-free fairly soon after Oliver’s diagnosis. We debated it for a long time, but in the end, it was the decision that made the most sense for our family. I have known plenty of children with food allergies, including family members, who have not restricted their own diets and I imagine there are plenty of other Big G families out there who do the same. And to that, I say, you do you, boo! No one knows your family the way you do; it’s a personal decision for sure. For us, we made the leap to living dairy-free for many reasons, so here are just a few:

  • Curbing accidents – By keeping products Oliver can’t eat out of the house, we are hoping to statistically cut down on the chances of him having an “oops” moment at home. We are realists so we’ve resigned ourselves to the idea that at some point, he will probably have an accident. Maybe another well-intentioned parent will accidentally offer him a cookie or he will reach onto a classmate’s plate and steal  a cheese puff (because, seriously who can resist?), it’s bound to happen at some point. In the US, dairy is so pervasive it almost seems inevitable. If we can cut down those odds even a little, then it’s worth it to us.
  • Economic impact, part 1 – Groceries are expensive, especially if you like to shop the outside of the store like we do. Fresh produce, meat, fish, and dairy (and the dairy-free products in that department) can add up quickly. Add to that snack foods and other packaged products, the idea of buying two of everything–one Oliver can eat and another he can’t but maybe we are used to buying–is enough to have me consider taking on a part-time job. Visions of a fridge and pantry packed with two versions of most everything, seems like such a waste.
  • Economic impact, part 2 – I am a big proponent of my voice, my dollars, and my internet “clicks” being valuable commodities. I believe that as a consumer, my opinion and needs should matter  to the businesses I support and if I find myself in a position where they don’t, then I have the luxury of moving on. We looked at our decision to go from buying for a single person in our family with special dietary needs to a family of three as hopefully a bigger statement to food-related businesses on the need for dairy-free food products and explicit labeling.
  • Health? – I put a question mark after this one because quite frankly I think the jury is still out as to whether animal-produced dairy products are good for you, bad for you, or somewhere in between. Like eggs, coffee, red meat, and wine, there seem to be new studies and advisories every year. What I do know is not having dairy in his diet won’t hurt Oliver and it is absolutely possible for him to have a well-balanced, healthful diet without it.
  • Second nature – By going dairy-free ourselves, John and I will find ourselves each and every day making decisions like Oliver will on what he puts into his body. We’ll have to ask questions, do research, and have back-up plans and hopefully, by doing that now, we will be able to help him better make decisions for himself and give him the ability to navigate the world confidently.

We have faced mixed reactions when we tell people, but one of the recurring reactions is, “I could never do that! I love cheese/chocolate/butter/fill-in-the-blank too much!” And had you asked me a year ago, I would have probably said the same thing. But honestly, once we made the decision, it really was like flipping a switch. We are so thankful to live in a time and place where we can find alternative versions of most everything!  I can’t say this is a decision for everyone, but for us it definitely feels right.

**If you are looking for an AWESOME resource to get yourself started or to learn more, Go Dairy Free is my go-to! Great recipes, advice, information, and product reviews!