Friday, September 6, 2019

THE FIRST YEAR: CELIAC DISEASE


Review of THE FIRST YEAR: CELIAC DISEASE AND LIVING GLUTEN-FREE: AN ESSENTIAL GUIDE FOR THE NEWLY DIAGNOSED by JULES E. DOWLER SHEPARD

Back in May 2018, I discovered I have Celiac disease. This was huge. I could do posts and posts about my experience; I could fill another entire blog about it. I may at some point start blogging about that experience, but for now I want to stick to book reviews and author interviews. However, don’t be surprised when some reviews of gluten-free cookbooks and the odd Celiac experience memoir start popping in among my already eclectic book reviews.

To share a brief summary of my experience, I have had health issues my entire life: inexplicable unresolvable health issues, the two biggest being a mysteriously ineffective immune system and a lifetime of nutrition deficiencies regardless of how well I ate or what supplements I took. Not counting a few outliers, most of my 30+ Celiac symptoms are really secondary symptoms of these two things: poor nutrient absorption and a terrible immune system. As for the “outliers,” from the moment I could talk I complained about stomach pain. My mother took me to every specialist she could find, they tested me for every food allergy they could (gluten wasn’t on people’s radar back then), and ultimately doctors started telling me the pain was in my head: the stomach aches are stress, I get sick all the time because of stress, just calm down. To make a long story short, in May 2018 I discovered that gluten is the source of all my issues. I went gluten-free—and while it has been intensely difficult and emotional in some ways—I feel better than I have my entire life, better than I knew human beings could feel.

That all said, I’m way late to reading this book! As the title implies, this book is designed for newly diagnosed Celiacs to help guide them through their first tough year and the often painful learning curve. The book breaks down topics by time frame—one month in, two months in, etc, —but I didn’t start this book until nine months after my diagnosis. I would love to say it’s because I didn’t know this book existed, but in truth it was some combination of lazy, busy, and underestimating how helpful the book would be for me. Once I started reading it, I definitely wanted to kick myself for not purchasing it the moment I came home from the doctor in May 2018.  

This book could have saved me a lot of trouble from learning things the hard way. Some of the issues Celiacs encounter include: concisely explaining the disease and your complicated individual-specific symptoms, eating out at restaurants or in other social settings, battling standard food allergy misconceptions and prejudice (and Celiac disease is technically an autoimmune disorder rather than a food allergy, but I and others are often taught to just say “food allergy” to help clarify that we cannot eat gluten), reading and researching labels, reacting to processed food labelled “gluten-free” either because of cross contamination or because some Celiacs can react to levels of gluten lower than what the US requires for products to be labelled “gluten-free,” learning to shop and cook and eat and entirely think about food differently, cross contamination in shared kitchens, secondary health issues, and then, of course, handling symptoms when you do “get glutened.”

Aside from specific advice or tips, the book is immensely valuable as emotional support for those newly diagnosed. Your struggle can feel very lonely and like those around you don’t understand. Reading about other people battling the same difficult-to-explain issues is extremely validating. Take the following quote: “The first few times I went grocery shopping were devasting. I remember standing in the aisles, crying.” It’s a quote from the book, but I could have written it myself. I didn’t actually cry, but I do recall halting my cart, welling up, and taking a moment to collect myself. It’s overwhelming going overnight from toss-anything-you-want-into-the-cart to read-every-single-label, research-products-on-phone, and can’t-eat-old-favorites. For the first few visits, grocery shopping took me 1-2 hours spent in the store, figuring out what I can and can’t eat now and growingly increasingly discouraged by the long list of “no.”  

If you’re a self-reliant person, it can be all too easy to think you don’t “need” a book like this, but I would highly recommend it to every newly diagnosed Celiac. In addition to the insight and advice about managing your condition, the emotional support is invaluable.  


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