The Psychological Side of Celiac

Posted: June 4th, 2012 | Author: | Filed under: Celiac | Tags: , , , , , , , | Comments Off on 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.


Brick Wall, Trampoline, or Something Else?

Posted: June 2nd, 2010 | Author: | Filed under: Faith, Personal | Tags: , , , | 1 Comment »

A small paragraph from 1 Corinthians 10 has been bouncing around my head these past weeks. I have several threads of thought so this post might be a little more disjointed than the ones I usually write. Nevertheless, I think I need to take a few moments to capture some of my thoughts and express them. It’s one of the ways I think. I would appreciate any thoughts, comments, or reactions my words spur in anyone who happens to read this. Incorporating and responding to the thoughts of others is another of the ways I process thoughts.

As I write this, it occurs to me that I should put a general caveat somewhere on my blog that anything I write on a given day expresses my reaction and understanding on that particular day. I may or may not have the same understanding or reaction on another day, whether that day comes years, months, weeks, or days later. Heck, I might not have precisely the same reaction later in the same day. As things I have written accumulate on this blog, it’s perfectly possible that something new I write might express a differing or even opposing view from something I’ve written in the past.

That doesn’t bother me at all. It’s the process and story of my life. A friend of mine was once taken by the opposing descriptions of the structure of belief as a brick wall or a trampoline. In the former case people spend a lot of effort shoring up the wall and if the wrong brick falls out, the whole thing collapses. Whereas, the latter has a strong framework, but a lot of freedom within that framework. He saw himself as moving or having moved from the brick wall to the trampoline and found the analogy very fitting.

Me? I would say the trampoline has too much structure, is too rigid, and is too unyielding to describe my process and internal experience. One analogy I’ve used is that of a river. Sometimes it is calmer. Sometimes it’s raging through a flood stage. But it’s always moving, with currents and eddies you may not be able to see until you’re caught in them. In that river, I may have a few fixed constructs or formations — a rock around which the waters part and swirl or a bridge that rises above them. But never anything as fixed or stable as the image of a trampoline.

Another image I use is that of a large pot of homemade soup. It’s bubbling and swirling as you add ingredients. The ingredients cook and intermingle in ways that are not always obvious. You taste and add things as you cook, moving toward a goal that may not be clearly defined but which you will recognize if you achieve it. The soup never stays in any one state nor is it ever exactly the same every time you cook it. Hmmm. The bubbling cauldron of soup is not merely an image for my internal process, but also captures  much about the manner in which I perceive reality.

Well, I’ve rambled about my inner state and have written nothing that I originally intended to write. But I think I’ll just change the title and let this post stand as written. I’ll try to write the post I originally intended to write for Friday.


One Year Gluten Free

Posted: April 14th, 2010 | Author: | Filed under: Celiac | Tags: , , , , , , , | Comments Off on One Year Gluten Free

It’s been roughly a year now since I was diagnosed with celiac disease and began a gluten free diet. It was quite a shift at first, but it’s almost become second nature now. I read the ingredients on everything I pick up and am still sometimes surprised. Just the other day my wife was making a Thai sauce when she noticed that the container of peanuts said it could contain wheat. (She noticed before she added them.) Who expects to find wheat in peanuts? Such is life these days.

We don’t go out to eat that often anymore, and when friends or family want to meet at a restaurant, I tend to skip the food and stick to coffee if it’s not a place I already know. It’s surprising how often food is involved when people gather for any reason, business or social. Whole foods are the safest at such gatherings. I always look for the raw vegetables, though I skip the dipping sauces that typically come with them.

It’s not been as difficult for me in many ways because I’ve always liked vegetables of different sorts, even as a kid. And many of my favorite dishes were already rice, bean, or lentil based and required little, if any, adjustment. The transition has also been easier since both my wife and I can really cook. I’ve always been grateful to my Dad for teaching me how to cook, but never more so than this past year. And my wife has been amazing. She was a little overwhelmed at first, but adapted quickly and has since become quite an accomplished gluten free chef. I know that a lot of people in our modern world never truly learn how to cook for a wide variety of reasons. But if your lifestyle and eating habits revolve around dining out and eating packaged, processed food, I’m not sure how you could make this particular transition. At the very least, it would have to be a lot more challenging than it has been for us.

Business travel remains a challenge. Fortunately, I don’t have to travel very often and I typically have plenty of advance warning when I do, so I can do research and plan how I am going to eat. It’s almost like putting together a battle supply plan in unfriendly territory. I know the stores, restaurants, and other resources in the Austin area pretty well. It’s much more of a challenge in an unfamiliar place. Moreover, the worst time to make yourself sick would be when you are traveling, so I tend to be especially conservative about what I eat when I’m on the road.

My family has also pretty thoroughly adjusted. Even though I’m the only one who has to eat gluten free, we don’t make separate meals for me. So much of what we eat at meals does not contain gluten. On my last business trip, my wife asked the kids if there was anything they had missed and would like for meals while I was gone. They couldn’t think of anything.

I feel better than I’ve felt in years, even if I’m still a long way from healed and healthy at this point. I’m not thrilled at all the doctors I’ve acquired over the past few years. I was used to having only one whom I saw infrequently. That’s not only no longer the case, it’s unlikely to ever be the case again. I’ve landed in a new phase of life.

Now that I’ve made the transition to life as a celiac and am feeling better, it’s time to start trying to get back into some kind of shape. I’ll make that my goal for this next year.


In Defense Of Food 0 – Introductory Thoughts

Posted: March 29th, 2010 | Author: | Filed under: Celiac, In Defense Of Food | Tags: , , , , | Comments Off on In Defense Of Food 0 – Introductory Thoughts

Last week I read Michael Pollan’s book, In Defense of Food, An Eater’s Manifesto. It’s quite well written and thoroughly sourced. He’s a journalist, not a scientist, but he is an academic as well and certainly able to document and defend his ideas. I plan to devote a post reviewing each of the three sections of his book. Pollan’s basic premise is actually simple and he unveils it immediately in the introduction.

Eat food. Not too much. Mostly plants.

Unfortunately, that’s easier said than done in the United States today. The first two sections explore why it has become so difficult and the last section explores ways to overcome those difficulties. If more of us begin to “vote” with our wallets, we may begin to have a real impact.

For the past year, since I was diagnosed with celiac disease, I’ve had to actually read and analyze the full ingredient list on absolutely everything (other than fresh produce)  before I eat it. I already knew that some common things were actually imitations, of course. For example, I’ve loved buttermilk my whole life. And it’s next to impossible to actually buy real buttermilk anywhere. Read the label on the “buttermilk” in the store next time you go shopping. Odds are it’s not actually buttermilk at all, but rather a chemical concoction designed to emulate the taste and texture of buttermilk. However, I didn’t realize until I began reading all labels just how little of our food is actually the food itself and how much is a processed imitation. That heavy whipping cream? Probably not real cream or at least not just cream. Those potato chips? You won’t find more than a few that are really just sliced, fried, and salted potatoes. Check that butter to see if it’s really just butter. Most of what is sold as “yogurt” is a lot more than milk with bacterial cultures. I even have to watch out for supposedly “raw” meat. It sometimes comes with a list of ingredients as well.

I’m not the sort of person who was blithely unaware of the health implications of processed foods. I grew up in a family that frequented health food stores and subscribed to Mother Earth News back in the 70s. My parents gardened so much that I was sick of it by the time I became an adult. We had a yogurt maker to make our own yogurt from scratch. My father co-authored an Indian cookbook and began teaching me how to cook (and letting me experiment) by the time I was in 5th grade. I’ve been somewhat aware of food and environmental concerns my whole life and have been partially engaged. I have friends with various sorts of food allergies and sensitivities and know their struggles. Even given all that background, I’ve been surprised this past year by just how difficult it is today to find real food.

Fortunately (or perhaps unfortunately), the Internet allows me to research each individual chemical ingredient and additive so I haven’t had to completely eliminate such things from my diet simply because I had no idea what it was. But I feel like cheering anytime I  find a short ingredient list with normal things in it that I recognize without online research. I find that I buy more from non-US companies.

Tasty Bites is a good example of one such company. In order to illustrate my point, let’s take a simple product like unflavored rice. Here is Tasty Bites microwaveable basmati rice. Look at the ingredients. There are three of them: water, basmati rice, and sunflower oil. That’s it. Short, simple, and easy to decipher. Compare that to the ingredients in Uncle Ben’s Basmati Ready Rice product (one of the shortest ingredient lists of all the Ready Rice products): WATER; BASMATI RICE; CANOLA OIL AND/OR SUNFLOWER OIL; SOY LECHITHIN; NIACIN; IRON (FERRIC ORTHOPHOSPHATE); THIAMINE (THIAMINE MONONITRATE); FOLATE (FOLIC ACID). I happen to know that most of that list represents an attempt to add “nutrients” into the processed rice. But I think it illustrates the point. Moreover, the Tasty Bites rice, simple as it is, tastes better than Uncle Ben’s processed rice product.

Or let’s look at a more complicated Tasty Bites product, their Zesty Lentils & Peas. Here is its ingredient list: Water, Bengal Lentils, Green Peas, Yellow Peas, Red Pepper, Coriander, Sunflower Oil, Sugar, Garlic, Salt, Pepper, Cumin, Chilies. It’s a longer list, but every single one of those ingredients is easily recognizable. Moreover, they are all food, not chemical additives or heavily processed food-like substances. Tasty Bites is just one example company, but it illustrates the lie that packaged foods require a preservative chemical bath. It’s a lie that too many of us have swallowed without question and authors like Michael Pollan are beginning to expose it.