Drinking from the Nutrition Fire Hose: First Steps at Learning the Gluten-Free Diet

 At the Massachusetts of Technology, where I work and teach, there is a well-known expression in our community about how it feels to be a student there. The educational experience is described as “drinking from the MIT fire hose.” There is so much to learn, and the faculty have a great desire to both educate and challenge students, but sometimes it may feel like too much.

On August 25th, I was diagnosed with celiac disease, a condition I previously knew nothing about. I started learning by studying the blogs, of which there are many. I found medical sites that explain celiac and the gluten-free diet. I wandered the aisles of a few grocery stores, looking for boxes and packages with gluten-free labeling and studying ingredients lists for the first time in years.

I remembered vividly when I was first diagnosed with Type 1 diabetes and had to learn anew how to eat, how to shop, how to cook. Overwhelming.

This week, I met with a nutritionist at the Joslin Diabetes Center in Boston, where I get my care. I think what I hoped for was an elegant, beautifully curated, and brief list titled something like, “Five Steps for Adjusting to a Gluten-Free Diet.” I did not get that.

The nutritionist and I talked for an hour. She was extremely knowledgeable about both T1D and celiac. She was also extremely generous with handouts. I accepted 10 of them and rejected a few more. (I just couldn’t — couldn’t! — tolerate an annotated bibliography of the best gluten-free cookbooks. I want one cookbook. Thankfully, my sister-in-law did some research and recommended one. That’s enough for now.) Here’s a list of the hand-outs, with the number of pages in each:

1. Celiac Disease and Gluten-Free Guidelines (8 pages)
2. Celiac Disease Resources (2 pages)
3. Gluten-Free Guidelines: Meal & Snack Suggestions (2 pages)
4. Celiac-Friendly Restaurants (6 pages)
5. Special Foods Available by Mail Order and on the Web (20 pages!)
6. T-Factor Fat Gram Counter (2 pages)
7. Snack Ideas (2 pages)
8. Glycemic Index List (1 page)
9. Lunch or Dinner Ideas: Protein (1 page)
10. Your Daily Protein Goals (1 page worksheet)

This appointment was Monday, and it is only now that I can bear to look through the handouts. I had enough to digest and absorb from my notes from my conversation with her, which included the advice to avoid cross-contamination of food at home by getting my own separate toaster. (What?! Are you kidding me?? This I did not say.)

I am still processing all of this. Have I taken any action? Yes, some. I have done a better job of packing myself food to take to work because, as of now, I feel stranded without it. I ordered the cookbook title my sister-in-law discovered, and I am looking forward to some weekend baking. With a work friend, I went to a new dining hall on campus that has offerings for every diet, at various stations, and left feeling both satisfied and virtuously gluten-free.

The nutritionist was very helpful. The blogs are very helpful. No doubt the handouts and the books I eventually read will be helpful, too. However, right now, the onus is on the patient to sort her way through the massive outpouring of information that is not very well selected or focused. It may provide good coverage, but it also overwhelms the target (that is, me). A year from now, I hope to be in a position to write a short, elegant guide on learning the gluten-free diet.

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Photo credit: Barrel blasting, by Quinn Dombrowski, on Flickr via a Creative Commons license

Jane Kokernak

Jane Kokernak teaches in Northeastern University’s College of Computer and Information Science as communications specialist, working with graduate students and faculty on writing and speaking to different audiences. She lives with her family and dog near Boston. In 1992, as an adult, she was diagnosed with Type 1 diabetes; in 2003, she switched from multiple daily injections to an insulin pump and has stayed with it. A contributing writer to ASweetLife since 2010, she is especially interested in how having a chronic illness affects self identity and perceptions of health.

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Jane Kokernak

Jane Kokernak teaches in Northeastern University’s College of Computer and Information Science as communications specialist, working with graduate students and faculty on writing and speaking to different audiences. She lives with her family and dog near Boston. In 1992, as an adult, she was diagnosed with Type 1 diabetes; in 2003, she switched from multiple daily injections to an insulin pump and has stayed with it. A contributing writer to ASweetLife since 2010, she is especially interested in how having a chronic illness affects self identity and perceptions of health.