Gluten – Freedom by Renee Dowdy

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Renee is currently transitioning to the role of Director of Education & Curriculum Design/Director of the Fraternal Values Society with Synergos, AMC. She can be found on twitter at @reneepdowdy or her blog: www.reneepdowdy.com

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I was returning for my second-year of my graduate program, July training, blistering, humid Ohio heat. I remember at first thinking it was the new pair of sandals I bought that was causing the bottom of my feet to react with fire and rage. I had blisters unlike any other, an inch thick, oozing, disgusting, at the bottom of my feet. When they reached the point where I could not walk, I made my way over to the doctor. Prescription in hand for Prednisone (a miracle steroid for others like me who have strong skin reactions that seem impossible to kick), I then sought, doctor after doctor for diagnosis. My skin reaction was dermatitis herpetiformis, a common skin reaction among individuals with Celiac Disease. My body had enough and was making its plea for help. I looked at my love of pumpkin scones and deep dish pizza and then looked at my health. My wellbeing clearly won.

I experimented with a gluten-free diet for a year and when taking my first full-time job, promptly made this issue priority number one for my health. I knew the overall health of my body was linked to diet, but I had no idea how closely linked so many of my struggles were until I was diagnosed with Celiac Disease in January 2009. (Why did I wait so long to be tested? Insurance. But that is a topic for another post. To give the quick and dirty, Celiac Disease testing involves several genetic tests among others that are not covered by many insurance providers).

Through much of college and graduate school I struggled with fatigue, frequent skin reactions, and other digestive nuisances. While the care for Celiac would be life-changing, the outcome of discovering the missing piece to care for my health was a huge weight lifted off my shoulders. For the #safit community, it is helpful to understand Celiac as it relates to nutrition – for yourself, a colleague, or a student, and to consider if there is a nutritional piece in your life that, if explored, could help resolve a key component of your overall wellness. In the United States, 1 in 133 people have Celiac Disease (http://www.cureceliacdisease.org/wp-content/uploads/2011/09/CDCFactSheets8_FactsFigures.pdf).  This is not uncommon and likely that you know someone impacted.

Celiac, an auto-immune disease best known for its requirement of a gluten-free diet, changed my life and my family’s. There are two frequently asked questions I receive:

  1. What exactly does gluten-free mean? It means no wheat, barley, rye, spelt, and most oats or any item that may be contaminated with these items. Yes, contaminated. I came to view my food as something dangerous. Individuals who have Celiac Disease have an auto-immune response that results in attacking the small intestine, preventing the absorption of nutrients.
  2. What happens to you when you have gluten? This feels like a normal question from friends and awkward among strangers, but in #safit, we are all friends so I’ll tell you. First, it’s important to know that the symptoms are not the same for all Celiacs. One of my friends with Celiac throws up when she has it. Others, many of us, have all kinds of not-so-joyful digestive distress. In college, it used to feel like knives were going through my stomach after I would have a pizza, creating such distress that I would be laying down in pain. Other short-terms effects include chronic bloating and pain, the aforementioned skin reactions, and fatigue. Long-term effects of not observing a gluten-free diet as a Celiac include anemia, infertility, weight-loss, and osteoporosis to name a few.  It is important to note that some have silent symptoms and may express no reaction whatsoever but are still experiencing negative impacts on the body.
  3. And a bonus question: Can’t you just have a little? Or can’t you just have this bit off of this gluten-filled item? The short answer: no. Even a small amount can have an impact. So one little sip or taste as a Celiac can send your immune system into turmoil. Nonetheless, the one little bite here or there could add up to long-term repercussions. This means that Celiac Disease is a daily exercise in self-control .

As a student affairs professional, it changed the way I looked at my work on college campuses, conference accommodations, and hospitality in an industry that prides itself on individualization and also often centers around food. I recently attended a conference where the gluten-free meal — three times a day for three days at the conference! — was a chicken breast and frozen vegetables (I can’t even recall breakfast – I believe I just had coffee and my own items). While decently healthy, a reality of Celiac is being at the mercy of the ability for a venue to provide an accommodation AND prepare a meal safely (without any ingredient of the meal coming in contact with gluten, i.e. sharing a cooking utensil, frying the food with oil that fried something with gluten, etc.). Having a reaction at home is certainly not comfortable but far more bearable than in a hotel room that you are sharing with another person and trying to keep up with the pace of a conference schedule. I come prepared wherever I go with gluten-free snacks just in case there is no accommodation or I do not trust the meal. Elisabeth Hasselback, co-host on the View who also has Celiac, shared that she once went to the bathroom to be able to eat a Lara Bar (a gluten-free gal or guy’s best friend) while attending a dinner at the White House. That is the reality a person with Celiac lives in, that each time you eat can be a risk, that to stay nourished you must always be prepared.

I have worked on college campuses that have been amazingly accommodating and had the opportunity to be part of revamping the approach dining operations took due to my experience and developing expertise. Other campuses, in my experience, act like the issue does not exist and is my problem (or any person in need of gluten-free accommodations) to solve. While this is my story as a professional, each time I dine on a campus I think of it as a student who requires this accommodation as well. With many recent lawsuits (http://www.usatoday.com/story/news/nation/2013/01/18/food-service-allergy-lawsuits/1845335/), all of us as campus professionals should be all ears to the expectations and begin to think through what our campus dining experiences are like with Celiac or many other food allergies (think nuts, soy, shellfish). The popularization of gluten-free as a fad diet has been a double-edged sword in my world. It has created more understanding and options but also at the risk of spreading false information or creating a perception as something that is a choice. If your exposure to the topic has been mainly through the main stream media edit of what it means, I encourage you to consider gluten-free beyond what is seen on the cover of popular health magazines and instead through the lens of requiring a gluten-free diet for health reasons.

So what can you do? Here are a few steps I recommend:

  1. Consider your campus dining operations. As a student affairs professional, you have the ability to ask questions, plant seeds, and follow-up with students who require gluten-free accommodations about their experiences. On one campus, they do gluten-free taste testing of potential entrees with a group. What an easy way to reach out and ensure that the meal you are serving  not only meets the accommodation but also tastes good!
  2. Take stock of what you serve as free food for students. How often is it pizza, pancakes, or cookies? Who does this leave out? And, more importantly, is this nutritionally fulfilling when we are working to support the minds and lives of students? Also a topic for another post, but consider how you can be inclusive of a wide variety of dietary needs by selecting a greater range of foods that more students can enjoy. 
  3. Ask for dietary restrictions. If this becomes part of your staff culture it becomes easier to provide an accommodation. Consider: your staff is going out for an end of the year lunch. Do you ask if your colleagues have any dining accommodations to be aware of before scheduling a reservation? If you know of a gluten-free accommodation you can then avoid the all-you-can-eat pasta bar and select something that can better suit everyone to celebrate.
  4. If you are unsure, just ask. At a previous institution, my supervisor asked me what I would like on staff birthdays, since they would celebrate everyone’s. Instead of letting it be a mystery, she was open that there would be cakes and pies and she wanted me to feel included. I picked up chocolate chip muffins to have in the office freezer to pull out when a special event would come around. No one felt awkward and when an event centered around food, there was something there for everyone.
  5. Know someone who was recently diagnosed? Send them a free gluten-free care package via the University of Chicago Celiac Disease Center (or make a donation if you are a fellow Celiac and know you would have benefited from such a resource) (http://www.cureceliacdisease.org/living-with-celiac/care-packages). I can say from personal experience that the care package is amazing and made me feel incredible and empowered when I received it in the mail.

My journey with Celiac could fill many blog pages and I am happy to discuss further strategies and information with anyone who is interested. Food is nourishment but on our campuses is also a source of community. Students gather for conversation around dining tables, we celebrate at banquets, and we gift one another delicious treats to demonstrate affection. There are many left out of being fully a part of these celebrations when dietary accommodations are not considered. May is Celiac Disease Awareness Month. What is one thing you can do to bring awareness on your campus, in your personal life, or to support a friend or colleague?

 

One comment to Gluten – Freedom by Renee Dowdy

  • Brian K. Root (@beekayroot)  says:

    First off, lovely post! I recently had the wonderful opportunity to learn more about Celiac when a faculty member joined our alternative spring break trip. Not only did she have Celiac, but she was also vegetarian. The whole week we were away from home, I couldn’t help but reflect on the limited eating options she had and the accommodations that were necessary. It also challenged me to think differently about feeding large groups of people. You posed the question in your blog entry, but it’s such an important one in a profession that thrives on providing free food all the time.

    Thanks for sharing.

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