Monday, October 22, 2012

Food Culture, Quality of Life, and Chronic Conditions

I've been trying to write this for so long and the words just fail me each time I think the thoughts.

Food is so important to our culture.  We "grab a bite to eat," "meet for lunch," and "have you over for dinner sometime." There is rarely a social engagement that goes by that doesn't include some sort of food as part of it.  We come late to avoid being part of the meal, we pre-eat ahead of time so we're not starving and we only pick at what is almost certainly (but of course not certainly) safe, and we have people over to our house, but don't let them touch anything in our kitchen.  If we are completely honest with ourselves, even if someone swears they cooked a gluten free meal, we don't believe them. It's so easy to forget to check that packet of spices you threw in the crock pot or to use that same cookie sheet you've been making pizzas on for years.  Cross contamination has happened in our kitchen and we're pretty sure you're not as scrupulous as we are.

We want to make friends and be social, but the challenges are sometimes overwhelming.  We've yet to go to a restaurant here where he hasn't gotten sick.  People keep sending us links to restaurants with GF options and we appreciate it, we really do, but the truth is that those places may have options, but they rarely have entirely GF kitchens.  It's the cross contamination that the problem, really.  Pots and pans and measuring cups have tiny cracks and crevices where the grains hide and they infiltrate his food.

There have been a couple of studies released recently citing a decrease in quality of life for folks with Celiac. It's certainly true here in our house. We've essentially taken travel outside of the US off any long term plans.  We eat the same thing here for breakfast and lunch and our variations for dinner are so minute that many of you would shake your heads in disapproval.  But one incident of "gluten poisoning" and he's unable to work/sleep/live life for two days.

Plus, and this is what really sucks the most, Celiac is an autoimmune disorder. He is chronically ill.  He is underweight. An illness that has me feeling pukey for a day or two knocks him on his feet for weeks.  He is constantly thinking about food and how he can force himself to consume 2400 calories a day to maintain his (under)weight.  I am constantly thinking about food and how I can sneak in another 400 calories a day because that's what the dietician said he needs to actually gain weight.  His body does not absorb nutrients and vitamins and I'm constantly worried about the long term effects of malabsorption on his body. And let's not even get started on all the other conditions that seem to be related to Celiac that also make his life miserable (food allergies, esophageal maladies, and other gastrointestinal issues) and contribute to a never-ending sense of doom in the pit of my stomach.

So, the reason I write this is not to have people feel pity for us. We are happy. We are active. We are the proud owners of a slightly naughty tabby cat.  We are fully capable of meeting with friends and discussing the plight of the NFC North (seriously? the Vikings are the team on top?!).  We watch the presidential debates and shout about how we don't believe in overly broad interpretations of the second amendment and guns kill and would you stop talking about the second amendment as if gun culture were okay (okay, fine, maybe that's just me).

I write this because I don't want you to feel badly when I constantly turn down your invitations to dinner.  It's not you, it's me.  I don't want you to be alarmed when the cooler is packed with food when we come to visit you and we eat out of the cooler. It's not you, it's me. I want the servers and cooks and chefs to understand that we when send the salad back because of the croutons, it is not acceptable to just pick them out and send it back to us. Those tiny grains are slowly killing my husband.  He's not "being picky." He's not trying to make a scene.

I'm asking for tolerance for our quirky food behavior.  It's not you, it's me.


  1. One of my very first writing gigs (years and years ago) was writing a magazine article about Celiac. Ever since then, I have thought so much about how difficult it must be to go out to eat with all the cross-contamination possibilities. Hugs to you guys.

    P.S. Go Vikes!

  2. This is the first time I've ever read something that spelled it out so clearly and perfectly. I had no idea how much every day is consumed with health. This was affecting, my friend, and I'm so honored that you wrote it and published it for us to read.

  3. Thank you for posting this. It seems like such a huge challenge. I'm glad he has you with him on this journey, but it's hard to navigate even when you're together. You're so right that food and the 'breaking of bread' is core to almost every culture.

    Did I send you this link? It's written by a woman I'm friends with. I haven't tried the recipes in person, but they sound delicious when she posts about them on FB. Some sound fattening!

  4. I was just thinking about this very topic just a few minutes ago. I've got a dairy intolerance. Just a tiny amount of milk will flare up an IBS attack and knock me out of the running for a day or 2...which is what is happening to me this morning. I must have inadvertently consumed something - peanut butter? chocolate? what-I-don't-even? - that contained milk and I'm miserable. But what I was thinking about is this is nothing to what my 1/2 dozen friends with Celiac disease deal with every single day.

    I think it's a cultural shift that is slowly slowly happening as is evident by the number of places offering GF options. But there is a lot of work to be done to increase awareness...and this post helps the process.

    Hang in there.


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