A few short years ago, Paul Graham, associate professor of English at St. Lawrence University in Canton, New York, likely never thought he would be writing a book about being diagnosed with celiac disease and losing something that, it turns out, was very precious to him: gluten.
Graham was diagnosed with celiac disease in December 2012, and from there he started accumulating experiences, emotions and frustrations that have been put together for In Memory of Bread: A Memoir. His experiences are not unlike many of our own: being very ill, getting misdiagnosed, finally getting diagnosed and then spending a lot of time trying to figure out how to make our favorite foods gluten free.
But the book is more than a “woe is me” tale. Gluten-Free Living sat down with Graham to talk about why he wrote the book, his quest to find the perfect gluten-free bread (and beer), how going gluten free improved his marriage, and why this diagnosis is particularly difficult for men.
Amy Leger: So why write this book?
Paul Graham: I am a literary writer, I am an essayist. What that means is, I like to go at a question or a problem from several different angles. In addition to raising awareness about celiac disease through my own experience, I wanted to explore culinary traditions that a person leaves behind when they forsake those grains that have been so important for the last 10,000 years or so of western culture—like wheat and barley. I also wanted to explore the traditions that a person who begins eating replacements for wheat and barley joins. I also wanted to break down the research that might explain the rise in celiac disease diagnoses, what is causing it, and why it’s so complicated.
AL: In the book you talk about the history of celiac disease. But this is your story. Why delve into history when there are other books that do that?
PG: I think it was important to me, as a person who has celiac, to be able to place myself in a historical context and understand that what I was going through was actually part of a really long medical mystery. That was interesting to me. At the same time, and this is me getting “English professory” on you, when you take that history and put it in the context of the story that is emotional, engrossing and involving, your readers are more likely to sit up and take notice about what it is you are trying to tell them and what it means.
I was interested in telling the story of this particular autoimmune disorder. But I think for someone who has just been knocked sideways with this diagnosis, knowing that people have been grappling with this for a millennium actually can be maybe a little bit comforting. I hope it is.
AL: One of the over-arching themes in the book is the quest to find the perfect gluten-free bread. Do you think the perfect gluten-free bread is on the horizon?
PG: I do. I think that people are paying very close attention to what other bakers are doing and companies are doing and they are learning from their mistakes and their successes. Many privately owned gluten-free bakers are making bread that is really quite good. People who live near small-scale, artisanal gluten-free bakers who are working with good science behind them are going to be able to get those breads or order mixes. The issue I think a lot of them are telling me is that it is very difficult to do it to scale. To crank out a thousand of them and ship out doesn’t work well. There is a lot of momentum out there. After talking with all of these bakers, it is really good to know so many people are out there trying to beat the game. I think it speaks to the power that bread has over us, and the fact that there is an ideal out there and that you can come close and sometimes close isn’t good enough. And I think it is a testament to our innovativeness in the kitchen and our spirit and the way that we’ll always be trying something.
AL: I loved how you described your first time baking bread: “We hovered over it like an accident scene for a few seconds and then pitched it, still warm, into the trash.” I can’t tell you how many times we gluten-free bakers have done this.
PG: Those scenes were fun and stressful for me to write. One thing I wasn’t prepared for was the degree of honesty it would take to write it the way I wanted to. That invariably meant saying that someone’s recipe or product wasn’t good enough. Bread is such a basic food, it really brings people together in this spirit of excitement and joy, and to pull something out of the oven that smelled so promising and then you dump it out of the baking tin and it just kind of disintegrates in front of your eyes. You feel like you’ve been ripped off. You’ve smelled it for the last hour and think, OK, that’s going to be great, and it’s not. We had a lot like that.
AL: You mentioned that cooking gluten-free food forced you to become a better cook. Are you grateful for it?
PG: I have become grateful for it. It is only in the process of talking about this book that I have come to see how having to leave behind a lot of western culinary traditions, ingredients, entrees, nudged me out of my comfort zone and made me explore cuisines that I probably never would have explored if the need hadn’t presented itself. I love Thai cooking right now. Same with Indian and Mexican—if you are willing to embrace the challenge, you can expand your cooking horizons.
AL: Those kinds of foods are easier to make gluten free, aren’t they?
PG: Absolutely. You’re not making gluten-free adjustments for the recipe at all. Wheat doesn’t grow in some of these places. Wheat isn’t a part of the Thai culture. It has never been a part of the Vietnamese culture.
When you make these foods, you are in the heart of the tradition, and it is safe for you if you don’t have other intolerances or allergies. There are cuisines from all over the world we don’t experience because we are such creatures of habit. This sort of forces you to overhaul your diet.
AL: Your story on the final gluten binge before going gluten free is something many people experience. What did that binge do for you—besides make you sick?
PG: It was ceremonial. It was important to me on some level that I turned away on my own terms. On the other hand, I was also pretty weak and exhausted, and my brain was floating like 3 feet above the rest of me because I was so anemic. I had a rough path to diagnosis. I had been thinking about that sandwich the entire time when I was sick, it was the mixture of flavors that I wanted. It was comfort and bar food. It was cheap food, and I just had to have it. And my wife didn’t find out that I had eaten it until she read the book.
AL: How did that go over?
PG: She just kind of looked and me and said, “OK, I get it.” And we never talked about it again. She would have really been upset with me, but at the same time she would have understood. If there is a regret I do have, it’s that I didn’t tell her about it so she could go out and do the same thing herself. She went gluten free with me. As for the Reuben, I know people who have done it with donuts and pizza. It’s an end-of-the-world scenario.
AL: Was that a hard story for you to tell?
PG: I knew I had to tell it, to admit my own weaknesses and honestly explore this experience and what it meant. People who know me well might have been a little surprised by it, but not that surprised.
AL: As you mentioned, your wife went gluten free with you. Has that experience had an impact on your marriage?
PG: It absolutely has. I think there is a way you could think about this whole book as being about partnership and subtly about marriage. She did it out of her own free will. She did it because she loved me and wanted me to be safe. I can honestly say, that is the most generous and nicest thing anyone has ever done for me. People have asked if I would be able to do it for her. The answer is yes. It has made us closer. First of all, because I have never been as sick as I was when she saw me in the hospital with this. But also because we went through this whole journey together. We discovered all these things that were awful together and all these things that were wonderful together. It couldn’t help but change our relationship.
AL: I know many people with celiac who are afraid to eat because of how sick they could get…have you had that experience?
PG: All the time, I don’t think it’s something you get good at. People who have this intolerance or autoimmune disorder, they know just how much of an extension of trust it is to have someone else prepare your food for you. Even if you have ordered a dish that is inherently gluten free, you don’t know what else has been on the cutting board or on the flat top or on the knives. It can be paralyzing.
How have I dealt with it? I have a small circle of trust. There are a number of restaurants where I have not had bad experiences no matter how many times I have gone there, so I tend to go back to those places.
The hardest part is seeing the full menu and knowing you can have only two or three options. It disrupts the story a restaurant is trying to create. You go to a restaurant to forget who you are on some level. Maybe you want go out and be fancier or shabbier, or you want to go back to childhood again. But anyone with celiac disease or another food-related concern, we walk into a restaurant and we know exactly who we are. That’s tough.
AL: Do you remember the time where you turned a corner and said, “I’m getting better, my situation is getting better. I can do this.”
PG: There were a lot of little moments early on as my body relearned to tolerate things it had been reacting to. For a little while I couldn’t handle dairy, meat and fish. Every time I successfully ate something off that list, I knew I was getting better. But in the book, the moment I knew I was going to be OK was an evening when I was cooking. The iPod was playing and all of a sudden music sounded good to me again. It was the Miles Davis Quintet doing their rendition of “Bye Bye Blackbird.” It was the first time I actually heard it. I felt like something in my head had clarified. For me, I had the gastrointestinal trouble and joint pain, but the thing I could not tolerate is the way it clouded my thinking. I honestly felt in that moment that something had changed and a fog started to lift.
It was not long after that I began running again. That was important too. That was
another one of those strange gifts of celiac disease for me. It has taught me to listen to my body more closely than I have ever listened to it before. I think it comes from that experience of being so severely surprised. I had never been sick before, I had never been in the hospital for anything other than stitches. To be admitted for several days and not know what is wrong, you can’t say to yourself, “I’m never going to go through this again,” because you don’t have that kind of say over your health, things can just come over you. What I decided was I am not going to be surprised again. Celiac disease made me a runner.
AL: You were home-brewing beer before your diagnosis. But since then, you’ve tried to find a great gluten-free beer. How is that going?
PG: It’s complicated. It started out really bad. I have found a really good gluten-free beer called Glutenberg, brewed in Montreal.
Where you get tricky is when you talk about gluten-reduced beers like Omission. This is a really hotly contested area. Some people say it’s bad for you and we don’t know if ELISA [enzyme-linked immunosorbent assay] readings are valid; others say it is under 10 ppm, it has to be OK. This is a genie that has been let out of the bottle. Even I proceed with caution there. I lean heavily on true gluten-free beer. I am making my own hard cider, and I’m dry hopping it too. Last September , my friend and I hand pressed 10 gallons of apple juice at his hobby farm. We mixed in some pear and crab apples. I put hops in it and let it sit for six months, and it’s really good! So I’m still brewing in a sense, you could say.
AL: You talk a lot in the book about beer and bread and the losses that go with that. You sound like you’re grieving. I think many people go through that.
PG: Actually, an early version of the book, the editor asked if I wanted to peg the book with the stages of grief. Ultimately, we decided not to do that. But I still think something of that logic and that psychological process is underpinning the book.
I grew up with the good fortune that I
always fit in. I was never different from anyone else in any way. Things had largely gone my way, in the sense that I graduated from college and went to graduate school and got a job. I have had my disappointments and losses like anyone, but I had never been socially different. I didn’t have to think about what I did or didn’t eat. And that was what celiac disease did, it made me different from everybody else. It is still that way. I think a lot of that tone of grief probably comes from that.
AL: I bring it up because you mention in your book being angry at the one-year
anniversary of your diagnosis. I wondered if you were still grieving.
PG: Yes and no. I still play competitive summer fast pitch softball. In fact, recently I forgot to throw a gluten-free beer into a cooler for myself and after the game everyone was gathering. I was 40 minutes from home and I had a water bottle. So that tradition bit me just a little bit. But for the most part, I’m not over it but I am pretty well reconciled to it. I think that is a stage a lot of us reach. I’m also surrounded by friends and family who (A) don’t remind me how good their eating is and (B) eat like I eat when we get together. That’s a great thing.
AL: Describe the difficulties about being a man with this disease. Does it feel like it impacts your masculinity?
PG: Yes. It definitely does. I think the two genders experience getting this diagnosis differently. There is kind of a “bro code” you could call it—the guys all going out and getting pizza and beer after the game. I had a conversation with one of my friends and he asked, “Can you have wings? Wings don’t have any bread crumbs on them.” And I asked, what’s been in the fryer? He said, “Aw, you have to think about what’s been in the fryer?” And the way he said it, it was like, “Come on, you’re being such a wimp about this.”
I feel it differently when I am around a group of guys as opposed to couples or a mixed party of friends and acquaintances. I haven’t done it, but I’m more tempted to just order fries (even if they have gone in the fryer). I’m tempted to take my chances so I can just be doing what everyone else is doing.
AL: Give us three tips for people who have a new gluten-free diagnosis.
PG: Tip No. 1, get a feel for what it means, how it feels and be comfortable with the gluten-free diet in your own house before you venture out into restaurants where (A) there will be threats wherever you look and (B) you will be confronted by all these things you can’t eat. I hunkered down for a good long time. It is really hard to tell whether you are getting healthy if you are going out to restaurants and getting cross-contaminated food.
My next point: This diagnosis requires a lot of patience. You’re going to have to get used to the fact that there are days where you make a mistake or someone makes one for you, and you are going to wake up the next day and feel like crap. When this first happened to me I thought, am I regressing? Do I have refractory celiac disease? I panicked. I just had to be patient.
My last piece of advice, get some good cookbooks from places that don’t grow wheat. Go to a used bookstore or garage sales to get used cookbooks. Become a student of Asian, Mexican, Greek cuisine—figure it out and dedicate yourself to it. It will serve you well in the long run. Life will get delicious again. The possibilities will open up. You will be a better cook, you can start doing fusion things. People will want to come to your house for dinner. That’s how you know you’ve crossed over. GF
Amy Leger is the family editor for Gluten-Free Living. Her website is thesavvyceliac.com. She lives in Colorado with her husband and two daughters.