The Psychological Side of Celiac

The latest episode of the Hold the Gluten Podcast includes an interview with Blair Raber, with the Celiac Disease Program at Children’s National Medical Center on their efforts to address the psychological impact of a celiac disease diagnosis.

Any diagnosis of a chronic disease carries a psychological toll, but since food is so deeply interwoven in our social interactions, a diagnosis of something like celiac disease can be particularly disruptive. I’m very much a “well, that’s the way things are, now I need to figure out how to deal with it” sort of person in most aspects of my life, but celiac disease was and to some extent still is a challenge for me. And it was even more of a blow when I discovered two of my children had essentially inherited celiac disease from me. (My other children don’t currently have active celiac disease, at least.) Yes, I know we don’t control our genetic makeup, but it’s still impossible to truly escape the sense that it’s my fault they have to deal with all the medical and social consequences of celiac disease.

My son seems to deal with it in some ways more like I do. The idea of going out to eat somewhere that requires a lot of discussion with the staff, preparation, and caution can seem exhausting. Like me, if he’s placed in that situation he’ll often just choose to get something to drink and wait until he’s home to eat. That’s a big part of the reason I tend to stick to restaurants that are tried and true and really prefer ones that make it relatively painless for their gluten free patrons.

My daughter, however, is much more assertive. She will quiz restaurant staff on how something was prepared. She’ll check and double-check to make sure it was prepared with all the necessary modifications. She’s always been one who, even from a very young age, would stick up for herself and argue her case with anyone. And those traits serve her well. Of course, she was angry when she was diagnosed and it did take her some time to deal with that aspect of it. (My son, on the other hand, more quickly focused on positive thinking and moving forward.) But I think she’s done a pretty amazing job of adapting. They both have.

I’m glad there is beginning to be an emphasis on working through the psychological toll a diagnosis of a chronic, incurable disease takes on any of us, even with the best attitude and support. I generally focus on the positive because I tend to pull myself toward the positive by speaking and writing about it instead of the negative, but it’s not easy and the road has often been bumpy. In my case, my body was so severely damaged by the time I was diagnosed that as I recover, there are more and more foods that, while not provoking an autoimmune reaction, are not things that I can readily eat without adverse reactions (to put it delicately). And sometimes as that list of restrictions has grown, my positive attitude has been in short supply.

For most of my life, even as a child, I was the person who would try any food, liked most of them, and had a cast-iron stomach. People would try to play jokes on me by doing things like coating a slice of pepperoni pizza with red pepper under the toppings. (I remember that one clearly at a youth camp I once attended.) The joke ended up being on them because I ate it and loved it. Fortunately, I can still handle peppers and coffee fine. But as the universe of things I can eat has gotten smaller and smaller, it’s hard not to feel like my body has betrayed me.

Sometimes I want to scream.

I do get over it and move on. If you are going to have a chronic disease of any sort, celiac disease is not a bad one to have. I have control over the disease myself. I don’t need medicine (beyond all the things for nutritional deficiencies I suffered). And if I strictly control my diet I will keep the disease completely at bay. Yes, sometimes it sucks, but as chronic, incurable diseases go, it could be a lot worse.

On the podcast, Maureen and Vanessa also discuss the recent dust-up with Domino’s Pizza and their “sort of gluten free” pizzas. The issue was not in the ingredients, but in the risk of cross-contamination. (For instance, if you cook a gluten free pizza, but then put it on the same surface for slicing that you do gluten-containing pizzas and slice it with the same utensils, the pizza has certainly been cross-contaminated and can no longer be considered “gluten free.”) I examined Domino’s FAQ on their gluten free pizza crust offering. For comparison, I’ll offer the similar FAQ page for Mr. Gatti’s, a large regional chain. Note the differences.

While there is always a risk of cross-contamination in any restaurant without dedicated gluten free facilities, there are a long list of actions Mr. Gatti’s took that Domino’s apparently did not. When you make a gluten free order at Mr. Gatti’s, your order is handled from start to finish by a “gluten free agent” who has successfully completed the company’s training on their gluten free preparation procedures and how to avoid cross-contamination. The gluten free pizzas are cooked in separate pans. They are sliced with separate utensils in a pizza box instead of on a common surface. So while they cannot guarantee there won’t be any cross-contamination, they are clear about the training, procedures, and actions they have in place to limit the possibility. There is nothing similar on the Domino’s FAQ. Indeed, they even list as a risk something as simple as an employee handling gluten-containing dough and then contaminating the other ingredients, something that should be easy to control with strict glove-changing procedures. (As an interesting aside, when my wife was growing up, her father  was friends with a long-time past owner of Mr. Gatti’s, so my wife had a lot of interaction with their family. Just a curious bit of trivia. They both have some stories to tell.)

Personally, if I’m going to have pizza, I prefer to either make my own or get it at one of the local places, like Promise Pizza, with very strict cross-contamination procedures, knowledgeable owners, and well-trained staff. But if I were going to risk it at a large chain (well, now that I can’t really eat dairy either, that’s extremely unlikely to ever happen), the clear winner from all the ones I’ve seen is Mr. Gatti’s. On the podcast, they mention the approach Chuck E. Cheese is taking, which is also a perfectly reasonable approach. They may have been ill-advised, but the approach Domino’s took was not a good one. It made it look like they were trying to tap into a “fad diet” more than trying to meet the needs of those of us with a medical requirement for a restrictive diet. That may not have been true. They may have had nothing but the best of intentions. But that’s the appearance it created.

Finally, if you listen to the end of the podcast, I’m the “Scott” Maureen mentions. Hold the Gluten was one of the online resources I discovered shortly after I was diagnosed more than three years ago. I’ve listened to most, if not all, of her podcasts. (I can’t remember how far I went back or if all her early ones were available, but I’ve certainly listened to every podcast since then.) Even when her podcasts were just Maureen talking into a microphone sharing her struggles and frustrations, they were still helpful to me. I didn’t necessarily struggle with the same things or have the same issues, but there’s something helpful in hearing from others. (And when I was diagnosed, I didn’t know anyone else with celiac disease.) It’s important to hear that you aren’t alone. Thanks Maureen!

Now that her daughter has been diagnosed, I find myself somewhat on the flip side of that equation. Maureen has been diagnosed with celiac disease about twice as long as I have, but I’ve been dealing with having two of my kids diagnosed for a couple of years now. They are both older than Maureen’s daughter, but there’s still some common ground and I try to offer what little I can when the opportunity presents itself. The struggles when you deal with a child diagnosed with this disease are somewhat different than your own personal struggles, especially when your child “got it” from you. So I was glad to hear my little practical advice helped. It’s not much, but the celiac community is only a community to the extent we are willing to try to help each other. And ultimately, we’re the only ones who really understand what it’s like — however much empathy other people might have.

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