Guest Post: Simple Daily Events That Aren’t Simple When You Have Crohn’s

This post is the second guest post in a series from Cindy Frei, founder and creator of Caleb’s Cooking Company.
Caleb’s Cooking Company provides whole, healthy, healing food to children with chronic, autoimmune, and/or digestive diseases and is named for Cindy’s son Caleb who was diagnosed with Crohn’s Disease.

Simple events that most would take for granted, like lunch at school, having a sleep over or eating dinner out, are far from simple when you have Crohn’s and are on a diet like the SCD. My 14-year-old son Caleb is on the SCD diet and his feelings around these events are usually very different than mine, as his mother. This can often lead to conflict between us.

Cindy and Caleb

Here are some of the daily events that are less simple these days:

Sleepovers

Something as simple as a sleep over at a friend’s house is a complicated affair. I have to pack food, his pills and talk to the mom about his diet and what he can and can’t eat. For Caleb, this is torture. He never wants me to say anything to the parent. He’d rather not eat than draw attention to himself. Me, on the other hand, not talking to the parent isn’t an option. Luckily, now his best friends and their parents understand and know his diet and are very supportive. But in the beginning and certainly any time he goes somewhere new, I have to have a conversation with the parent, which causes tension between Caleb and me.

School Lunches

Caleb’s school offers lunch, but because of Caleb’s diet, he can’t eat it- or at least 95% of it. I pack his lunch every day, but again for Caleb, this is embarrassing. He doesn’t want to be the only kid with a packed lunch. I get up early every morning to make sure he gets a healthy protein (usually chicken or salmon), along with veggies and fruit. Most days, the lunch comes home unopened. When I ask Caleb about it, he says he’s uncomfortable eating a packed lunch when everyone else is eating the school lunch. As his mother, I understand the social pressures, but also feel frustrated and worried that he’s not getting the nutrition he needs. I’ve learned to let it go – and focus on loading his breakfast and dinner with extra nutrition to compensate.

Going Out For Meals

When you’re on a diet like The Specific Carbohydrate Diet, which forbids grains, gluten, complex carbs, most dairy, sugar and preservatives, it severely limits what you can buy at the grocery store. You don’t realize how many products have either some sort of sugar or corn syrup in them or a wide variety of toxins and preservatives. This is part of the reason that Caleb and I have created Caleb’s Cooking Company; a company to create healthy fast food for kids, that is grain, gluten, sugar, dairy & preservative free – food like pizzas, chicken nuggets and enchiladas.

Even with Caleb’s Cooking Company, I still must make almost everything else, from crackers and bread, to cookies, cakes, jam and ketchup, from scratch. Thankfully, more and more online stores are popping up selling whole products without these preservatives and sugars. But, eating in gets boring and certainly I know I can use a break every now and again. There are a couple of restaurants that we can visit, but there’s always a risk involved that Caleb is ingesting something he shouldn’t. Manufacturers and restaurants will claim their products do or don’t contain certain ingredients, but when contacted, they can’t guarantee it. So, as a result, eating out, which both Caleb and I enjoy, can again lead to conflict. I want Caleb to enjoy the food, but it must be in moderation.

The longer we are on the SCD Diet (I am on the diet with him), the more I am learning to surrender to what is. I recognize that this is a lifelong journey and Caleb’s experience of it, is and will be, different than mine.

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