Q&A: Celiac Disease and the Workplace

This Q&A was conducted by Jamie Oberdick for the Penn State ITS Climate and Diversity Team Blog when I worked as a marketing and communications specialist with ITS Training Services at Penn State

Tara is one of millions of people who deals with celiac disease as a reality of her every day life. Via this interview, Tara and I hope to educate people about what celiac disease actually is, the challenges and very real health danger it presents, and how to accommodate someone in the workplace who needs a gluten-free diet.

What is your exact condition that requires you to have a gluten-free diet and how did you find out you have it?

I have celiac disease, which is an immune system condition through which the body attacks and destroys the nutrient-absorbing villi in the small intestine when gluten is ingested. Simply put, gluten is a protein in wheat, barley, and rye, and it hides in many other processed foods as a thickening, anti-caking, and flavoring agent, to name a few hidden sources.

I had been ill, on and off, for several years. At the tail end of 2001, I contracted what doctors diagnosed as a stomach virus. The virus never went away, and I ended up in the hospital after two trips to the emergency room. I spent nine days in the hospital before doctors started to test for other conditions. A biopsy of my small intestine in February 2002 confirmed that I suffered from celiac disease.

How long have you been on the diet?

I have been on the gluten-free diet since my celiac disease diagnosis more than ten years ago.

What are some of the challenges (and benefits) of being on this diet?

It’s a complete lifestyle change. In all aspects of life, from social to professional, people come together around food. It isn’t something we think about if not prompted. This is natural, innate behavior. The social ramifications of being on a diet that prohibits the general consumption of food has been the biggest challenge for me. It is one I will never overcome. I accept it and have learned to adapt by being honest with people about why I am not eating at a social event or a work lunch or a conference buffet, etc. I often carry my own food to ensure that I am able to eat something at a food-related gathering.

Eating at restaurants or in other people’s homes is an even bigger challenge. Trace amounts of gluten can damage the intestine to an unknown extent. This means that cooking surfaces and utensils used for bread or other gluten containing foods can cross-contaminate otherwise gluten-free foods if not thoroughly washed between uses. I can’t even dip mayonnaise out of a jar at someone else’s home or use their butter due to the risk of contamination from bread particles. Most people don’t realize the risks or have full awareness of the many places gluten can hide. I read all labels very carefully. If food is not labeled as “gluten free” and has an ingredient like “natural flavoring,” or any other unidentifiable source, I can’t eat it.

The benefit, for me, is good health. All sorts of problems can develop in people with celiac disease who don’t follow a gluten-free diet including a host of other autoimmune diseases, anemia, osteoporosis, infertility, neurological disorders, and even cancer. One statistic I read estimated that 42,000 children worldwide die each year from undiagnosed celiac disease. Not following a gluten-free diet, to me, is the equivalent of going undiagnosed. Another study showed that people with undiagnosed celiac disease have a 400% higher mortality rate than those without celiac disease. This makes it worth sticking to the diet.

What are some of the social hurdles? Do you find most people are understanding?

I’ve found most people to be incredibly accepting, more so than I would have expected. When I first started working at Penn State—on my first day here, actually—I walked into my cubicle to find a welcome muffin on my desk! I had to explain to my thoughtful co-worker that I had celiac disease and could not eat muffins made with traditional wheat flour. I was somewhat embarrassed to have to start our relationship that way, but I learned that she knew more about celiac disease and the gluten-free diet than most people at the time. She took the muffin back to her cubicle and, to this day, prepares gluten-free food whenever we get together and goes out of her way to provide a gluten-free option at social events and professional gatherings if she knows I’ll be in attendance. It is above and beyond, and this level of compassion and understanding makes the condition easier to deal with.

The social hurdles are often cases in which people have the best intentions but don’t have sufficient knowledge to accommodate my needs. Gluten is hidden in so many foods, and most don’t know everything to look for when considering what it takes to prepare a gluten free meal. It isn’t as simple as eliminating overt ingredients of wheat, barley, and rye. I have to think about everything, even the brand of spices used to flavor my meal since wheat is used as an anticaking agent in some.

Any examples of someone not being very understanding, and how you handled it?

Like I said, most people are accepting and really want to help. The problem comes with lack of understanding. I’ll target our own group as an example (because I know we appreciate constructive feedback). I’ve noticed that the registration forms for various IT functions now provide an option for special dietary requests. This is an excellent step in the right direction. To be as safe as possible, I make a point to gather as much information about the food provider and their preparation methods as I can prior to the event. There have been several occasions in which I was not comfortable partaking of the “gluten free” option after learning of the preparation process. My concern is that those not as familiar or comfortable with gathering more information may eat the “gluten free” meal and become ill, as did happen in one case I’m aware of. It’s important to remember that the gluten free diet is often not a choice, like other diets may be. It is a health requirement and should be treated as stringently as a peanut or shellfish allergy would be.

Has it affected you at work? If so, what are some situations where it has?

I’m affected with every work-related function that involves food—from birthday lunches to business meetings to office pot-lucks to conferences and events—there is always some level of discomfort. This has a lot to do with my personality, I think. My biggest source of discomfort with regard to my diet is creating an uncomfortable situation for others. Here’s an example. I recently attended a conference where many of the dinners were “on your own.” One night, I ended up with a large group of people who had already chosen a restaurant. After hearing my discussion with the host, they insisted on finding a restaurant where I could eat safely. Not wanting to put everyone through the fiasco a second time (it was getting late, and everyone was quite hungry), I checked my newly installed iPhone app to locate a restaurant in the vicinity that claimed to provide gluten free options. The woman who had led us to the first restaurant saw one she recognized on the list, and off we went. The conversation at this restaurant fared even worse than the first, ending with the manager saying he could not guarantee the food would not be contaminated in the preparation process and did not recommend that I eat there. With the group already seated, it took all my powers of persuasion to convince my new friends that I was happy sipping a beverage until I returned to my hotel room, where gluten free food awaited. (It travels with me everywhere.)

What about the current trend of people choosing gluten-free diets – is that good or bad for people with celiac disease/gluten allergies (more selections at stores, people more likely to incorrectly think your condition is a choice, etc.)?

Well, the obvious bonus is that gluten free food is more widely available than ever before. I remember, when I was first diagnosed, sending a letter to a list of restaurant chains describing my dietary requirements and asking if they offered any menu items that would accommodate my gluten free diet. With the exception of one, responses came back with differing versions of “I’m sorry but we are unable to accommodate those requirements.” Today, you can count on most people in the restaurant and food industry being familiar with the term gluten-free, and many restaurants now offer gluten free menus or will highlight the gluten free options on a regular menu. It’s much easier to have that dialog with a server, host, or chef than it ever was before, and grocery shopping is also easier with more foods being labeled as gluten free. I attribute these changes, primarily, to the rise in awareness of the gluten free diet.

The caveat is that, while awareness of the gluten free diet is at an all-time high, awareness of celiac disease remains fairly low. People are not making the connection between the diet and the disease with which it is dependently linked. For some reason, people have latched on to the gluten-free diet as a health trend rather than as a treatment for celiac disease and gluten intolerance. According to what I’ve heard and read from doctors and nutritionists, the gluten free diet provides no heath benefits to people who do not suffer from either of those conditions. In and of itself, the gluten free diet is not a weight loss diet and, in fact, many gluten free foods contain more fat and calories than their gluten containing counterparts. People may be mistaking low-carbohydrate diets for gluten free—I’m not sure—but for the normal population, gluten free does not automatically mean healthy.

I think once anything reaches the level of trend or fad it runs the risk of losing credibility, and I’ve seen some examples of this in the news. There was one case in which a restaurant chef admitted on Facebook to lying about the gluten free status of food he prepared where he worked. The chef did not take gluten free requests seriously, claiming the diet was a fad. Well, I guess it is a fad, but it is also much more. This level of ignorance is devastating to people with celiac disease.

I understand you’ve written about your experiences – where can that be found?

I wrote an article titled “Celiac disease remains tough to diagnose” for the State College Celiac Support Group that appeared in the Centre Daily Times a while ago. Also, to promote education during celiac disease awareness month last May, I shared the portion of my memoir that deals with my celiac disease diagnosis. All this content can be found in the “articles” and “gluten free” sections of my website at http://taracaimi.com.

Anything else you might like to add?

As you can probably tell, I’m dedicated to steering the recent rise in awareness of the gluten free diet toward better education and understanding of celiac disease. I want to thank you for highlighting this as an important diversity topic. Because of the natural connection between food and social activities, it is easy to overlook the related challenges for those of us with dietary restrictions. It’s hard to think that food could be anything but a unifying factor, but it’s important to remember that it can be just the opposite as well.

I recommend that people talk to those they know who have dietary restrictions to learn more about their experiences and also not to take it personally when someone with a dietary restriction refrains from eating in any given situation. This is often not a choice. When hosting an event, if you’d like to include options for special diets, be sure to consult an expert on all requirements to ensure the safety of those options. Food is good. For some of us, finding safe food is just a little more complicated.

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