Saturday, October 3, 2015

Cleanup in Aisle 9: The Adjustment Phase

Every Celiac or parent of a Celiac does it.

I did it the week before we were officially diagnosed. Some wait until after.

The first trip to the grocery store, in which you find there is nothing to eat anymore.

And tears were shed in Aisle 9.

My boys were at VBS that week, so I had literally one morning I wasn’t helping and could instead, go to the grocery store and read labels and make a plan of how I was soon going to feed my Celiac son. Keep in mind this was 6 years ago. In many aspects of life, that is not that far ago. In gluten-free-speak, it was not quite the dark ages but it was before the industrial revolution. Betty Crocker was the first mainstream brand to release gluten free items – and she had not debuted yet. Gluten was still very much confused with glucose (“uh, ma’am, I think you want the sugar free section?” Um, no!) and certainly did not have its own section yet in most stores in the greater Cleveland area. Gluten free items were not to be found in Target or Wal-Mart or gas stations or vending machines.

I have never counted, but I feel that I likely rotate through around 20 dinner recipes with any great regularity. The trick to going gluten free for us was to keep as many of those routine meals as possible by simply substituting gluten free items (usually noodles), but some meals had to be completely dropped. A casserole made with stuffing or croutons, or anything that relied heavily upon breadcrumbs – no longer were such meals cost effective or not did they taste right. So new recipes did indeed have to be found, but that actually has turned out to be a good thing. (more on that in an upcoming post)

We felt the absolute hardest replacement, of course, was bread. Most every Celiac parent has this story too. The one in which you spend $6 or more for a small, very hard and dense loaf of “bread,” bring it home, eat it and cry. Not only because you just wasted $6, but also because the bread should not even be called bread. Again, though – this was our experience 6 years ago, when there were only one or two companies that produced gluten free bread. The bread needed to be toasted to even be edible, literally. When Udi’s bread came into the market I rejoiced. I know some gluten free folks compare it to “Wonder Bread” – but I simply felt it WAS a wonder. It could be frozen yet it is shelf stable --- meaning I could pack it and travel with it for days at a time. And no toaster was required, it could simply be eaten like regular bread. Again, for travel, which we used to do a lot of – this helped get life one step closer to normal. And now there are several other tasty brands too!

Traveling was also overwhelming, though we did not let the diagnosis slow us down. Not long after, we took a ten day trip through 7 states, visiting friends, family and attending two family parties. It was exhausting and so hard to find food back then. Very few restaurants were able to accommodate our son safely (nor did I expect them to) – so I packed a large cooler and planned the best I could. We were so new to the diet, though, it was still hard deciphering labels when we did have to shop or go to a restaurant – so we ended up literally pulling into a Best Buy at one point and buying an iPod (cheapest available, but still, yikes!) and then standing outside coffee shops to use their wi-fi signals to figure out how we would feed the child safely at times.  (disclaimer – we were very late adopters on smart cell phones – we had just new to cell phones back then and they were the flip kind. Now we are so spoiled we have smart phones and I use mine often at the grocery store to double check ingredients!)

Traveling has become easier as many restaurants have added gluten free menus (though I do not trust all of them), but more exciting to me than that is seeing gluten free sections in so many grocery stores across the country. Often times when traveling, we will go to a grocery store and buy and make lunch or dinner instead of risking cross contamination at a restaurant that does provide a truly gluten free meal.

 Lunch in State College, Pennsylvania - fresh gluten free bread and brownies from 
Good Seed Baking Co., with a stop at a local market for pepperoni, cheese and drinks

As with any diagnosis, there is a time for grief. Losing the ability to eat without research and worry has a huge, daily impact. It changes your kitchen cupboards, travel, school and church, dinner dates and playdates. We have tried very hard to keep a positive attitude here – trying to make food a non-issue. If there is something delicious being handed out as a post-soccer treat for example, my son knows when he goes home that he has a bin he can pick from some of his favorite treats instead. If there is something being served at school, I work hard to replicate it and send it in that day. And it has worked. My son’s attitude is amazing – he gets bummed at times, but always knows that he can get something better another time. He shows amazing restraint and can delay self-gratification longer than most adults I know. He has come to embrace being gluten free as good, as part of who he is. A few months ago I told him there may be a cure someday, and when he is old enough, he might decide to take a medicine and then be able to eat gluten. His response? He likes being gluten free, and thinks he would rather just keep eating gluten free.

One of his many dreams is to own a gluten free pizza restaurant someday, and he knows I will be first in line when it opens.

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