Author Paul Graham speaks with Beyond Celiac about his new memoir, In Memory of Bread (Clarkson Potter, $26.00), an account of his celiac disease diagnosis and the life changes that came along with it. Graham was diagnosed with celiac disease in his 30s and had, until then, enjoyed brewing beer, eating his wife’s homemade bread and making meals loaded with gluten. All of that changed when he started a gluten-free diet.
In the interview, Graham talks about his last gluten-filled supper, the process of learning to cook gluten-free meals, reaching men who are living with undiagnosed celiac disease and how his life has changed now that the taste of bread is a mere memory.
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Don't want to watch the interview with Paul Graham? Read the transcript here.
Claire Baker: We are chatting with Paul Graham. He's a memoirist and a book writer whose recent In Memory of Bread was released earlier this year. As a bonus for tuning into the webcast, you will have the opportunity to win a prize pack which you'll be able to read about down below so please enter. I want to note before we begin that Beyond Celiac receives generous support from sponsors to make programs like this and all our work possible.
Today's sponsor is Schär. Schär uses their expertise and commitment to help those with special nutrition requirements get more out of life -- and these cookies, they help me get more out of life. So I want to thank Schär for being our sponsor today. They've been doing gluten-free foods for more than 30 years and they are a leader in gluten-free products.
So I would love to introduce Paul Graham to you. I recently read his book; it was a delightful read and I am so pleased that he's able to join us today. Welcome, Paul. Tell us about you.
Paul Graham: Thanks for having me, Claire. What should you know about me? Just as a quick introduction, I spend most of my time on the campus and in the classrooms of St. Lawrence University in Canton, New York where I am an English professor and I focus on creative writing, both fiction and creative nonfiction writing, and also recently American literature. I started out as a fiction writer and I published quite a bit of short fiction over the last couple of years (first decade of my career). And then I began to slowly focus on food and that dovetailed with my celiac disease diagnosis and all of that came together in this book that I published in June called, In Memory of Bread.
Claire Baker: You mentioned to me when we spoke earlier that you really didn't want your first book to be about your celiac story. Why was that?
Paul Graham: Well, I just didn't want to write a traditional memoir. What I really wanted to be able to do was range through several topics at the same time to get a better understanding of celiac disease and to help my readers get a better understanding of celiac disease and what the diagnosis means. So I wanted to cover history and science and immunology and agriculture and gastronomy, and, at least at first, I didn't see a way that I could do that and tell my own story.
But beyond that I also knew that writing about being diagnosed with celiac disease and making that adjustment to a gluten-free life would call for honesty -- at times brutal honesty – about my own failures, about what it was like, about what I was thinking, what I was feeling, about my search for really delicious gluten-free products and I didn't think that I wanted to be that honest but it turns out that I was, so it all worked out okay.
Claire Baker: One bit of honesty that I noted right away was that even after you got the diagnosis you -- I think you went on a little cheating binge, is that right?
Paul Graham: I don't know if it's a cheating binge; I would call it a little more of like a kamikaze valediction to my gluten life. There is a scene in the book where -- and everybody is talking about this scene with me, they want to talk about it; but it turns out that it's not that irregular for people who have been diagnosed with celiac disease to go and have, like, one last bite, one last meal. And I write about the time that I went to the local hotel and got a reuben and downed it without my wife knowing and I remember how I felt really stupid, also pretty bad. So yeah, that's part of the honesty, that's part of owning it, I guess. I had to admit that to my family.
Claire Baker: I have celiac disease also and one thing that really resonated for me was being able to remember my last gluten-filled meal. I was right on the verge of diagnosis; I didn't have a diagnosis yet, but it was coming. The biopsy was done, I was just waiting for the results to come in. So I went to a restaurant with friends and had a -- I'm vegetarian so I had a vegetarian Philly cheesesteak which is just wheat gluten on wheat gluten so that was my last one. I had been eating gluten up until then so I didn't feel particularly worse than I had before that I just didn't know how much better I was going to feel later. Anyway, that was my little kamikaze -- was the gluten-filled Philly cheesesteak. We have a debate in the office, but before we go there I want to ask what your path of diagnosis was like -- it was actually fairly alarming. Will you tell us about it?
Paul Graham: Sure. I think it was alarming, but now that I've done the research, I don't think it was all that unusual for people with celiac disease. The simple version of the story is that in 2012, and I write about this, right around the holidays I came down with what I thought was a stomach bug and you know the typical G.I. symptoms associated with celiac disease, but my doctor instead of putting me on elimination diet put me on antibiotics – Cepharol. And I took that for a week and felt awful and continued to feel bad and when that didn't work he put me on Bactrim and when that didn't work he put me on Flagyl, which I was finally allergic to.
And when I went into the emergency room they drew some blood and they said, "Hey, you're really anemic. Wonder why?” But they didn't say anything about celiac disease and they just sent me home with some iron supplements and basically said, "Good luck, buddy." And after that throughout that time period I was continuing to eat gluten: toast, pasta –things that I thought would be gentle on my gut and I was actually poisoning myself.
So what happened was, when I had my bad allergic reaction to the Flagyl I eventually ended up in the hospital to stay. I was in such bad shape that I needed blood transfusions before anybody would do a biopsy, endoscopy, colonoscopy -- any of that. And that was how I came to be diagnosed. The G.I. who was on staff at the hospital took one look at me and he said, "Hey, I think you have celiac disease; either that or you have Crohn's.” But we had to wait a little while.
But if I think back through my history, I actually see signs of celiac disease, like, all the way back into my 20s. I had skin conditions that were misdiagnosed as eczema; they were actually dermatitis herpetiformis which is one of the early harbingers of celiac disease. I had gut flare-ups. I had basically 15 years of symptoms that if I had been paying a little bit more attention or the doctors had been paying a little bit more attention or all of us had been we probably would've been able to figure it out earlier. On the other hand, when you're that sick you get diagnosed in a hurry and you start to feel better in a pretty short period of time as well; so it's kind of a mixed blessing there.
Claire Baker: So as I had started to say before, we had a debate in the office about whether or not celiac disease can be a blessing in disguise. Diagnosis, yes, but the disease itself, that's the question. What do you think and why?
Paul Graham: I'm going to say yes, because some of the things that I write about in the book. For one thing, switching out gluten when I was diagnosed with celiac disease forced me to become a better cook. I had always loved cooking. I write about it a lot in the book. I brewed my own beer, I made my own bread, I made my own pasta, I made my own gnocchi – those kinds of things. And when I discovered I couldn't eat those things and I discovered the substitutions were okay but not what I was looking for, I searched out other food traditions. For instance, Thai food, Indian food, Vietnamese food and these are things that I would've gotten around to eventually, but celiac disease really forced me to think about other ways to cook. Because my wife went gluten-free with me (I write about that a lot in the book) it definitely made us closer and we had some good laughs and some really frustrating moments as we went on that journey together.
And then I think the final blessing in disguise, if that's what you want to call it, is that celiac disease forced me to listen more closely to my body than I ever had listen to it before. I was kind of a typical guy in the sense that I just dumped food in and didn't think much about it. I'm pretty athletic so I like to go out and play hard and work hard and after that something changed and I just began to think that I don't really want to be that sick again, which of course is something that you don't really have any say over; but I didn't want to be surprised that way.
So in a very real way celiac disease turned me into a runner because I figured out that I would know that the celiac disease was in remission and that I was getting all the nutrients out of the food that I should be getting if I could go out and do the mileage that I had been doing pretty much all the time and feel much the same way. So in that sense, it really did change my life for the better in a lot of ways.
Claire Baker: Most of our community that follow us Facebook are women. Probably 90% are women. So in your experience in talking to people since you’ve written the book -- my guess is you probably hear more from women than men, but what kind of reaction have you gotten from men; both those with celiac disease and those out in the world that are like, “Hey, dude you just talked about your business in a book. What's that about?”
Paul Graham: Well, that's part of the honesty that I had to get in touch with in order to write the book. I have heard from women more than from men. My hope in writing the book is that I will be able to reach more men because I think the men are in that population of people who have celiac disease who are either undiagnosed or underdiagnosed or misdiagnosed. I hope that writing about some of the substitutions and lifestyle changes and the way that you ultimately really do feel better will perhaps inspire more men to get tested, will inspire more men to adhere to the gluten-free diet.
I just had a nice letter from somebody who has type 1 diabetes instead of celiac disease and he said, “You know, as somebody who has an autoimmune disorder and really has to think carefully about his diet, I really appreciated this book,” because it is a little different when you're a guy, I think, because of that bro code, you know what I mean? You go out and you drink your beer and you eat your pizza and that old saying that says, "Damn the torpedoes and full speed ahead,” right? You can't do that anymore and it really does force you to think clearly about how you relate to people, but I think that there's a lot for women in the book too, obviously.
Claire Baker: So by writing this book you put yourself squarely in the crosshairs of critics who think that people with celiac disease are a bunch of privileged whiners who aren't really that sick and we see that all the time. I imagine that you're hearing that. Does it bounce off of you? How does it make you feel and what do you do to kind of stay in the light?
Paul Graham: Well, I got so sick so fast and I got so much better so fast that a lot of people that are around me never doubted me and never said, "Hey, you're a whiner." And because I know that gluten is poison for me, I always have that to fall back on. But you're absolutely right, it is frustrating when people say, "Oh, you're just doing the trend diet” or “you are just a whiner” and “you're just a hipster,” or something like that.
What I tell myself is that the science behind celiac disease is a mystery. We know the way that it works on the body but we don’t know what the trigger is or what causes the gene to flip on. And the way that food reacts to our bodies or our bodies react to food -- all these things are complex and a lot of people are not up to speed on the science. They just don't know. And if you're really paying attention to things you can say ok, well, we can prove that celiac disease is not all in your head and you can prove that it's not a trend because you look at the biopsy. I find that if you have a conversation with people about the science behind it actually it does change their perspective a little bit. People who have wheat allergy, it’s the same thing, there's science on allergies.
Non-celiac gluten sensitivity, as it used to be called or just gluten intolerance, that's a little harder because people who suffer from that without the genetic marker or without the histamine being present they have a tougher case to make. But look, I think we can all name somebody who has a list of foods that don’t agree with them. I know people who don't eat nightshades, I know people who don’t eat nuts -- that sort of thing because they just kind of make them feel better. So in the end, my thinking on this is live and let live, I guess, but also when you're confronted with somebody who's really doubting you and they're saying, ok, it wasn't all trend, you know, stay in the light by falling back on the science and saying, “There’s a lot of research into this. People are not shooting in the dark here,” and I think that helps.
Claire Baker: A lot of people have a lot of food challenges; I want to give a little love to our sponsor Schär. These are the graham crackers and it's summer during the time of our taping and I've been doing some s’mores and these are pretty awesome but Paul you were telling me you have a different favorite Schär product.
Paul Graham: I'm a big fan of table water crackers, especially since the recipe has been revamped. They are perfect with just about everything or by themselves. I always have a bag or two of those in my pantry.
Claire Baker: Did they replace something that used to be a staple in your diet or is it a new...?
Paul Graham: Oh, yeah. Remember the Carr’s Table Water Crackers, the little round white ones? You're supposed to have them with cheese or fruit or something like that, but they were good all by themselves. So this is what I nosh on instead of them, the Schär crackers.
Claire Baker: That's fun. Schär recently reformulated their sandwich bread which is shelf stable which is great, because then I don't have to wait for it to thaw. It tastes really good so I'm glad they’ve been working on their formulas and making it better and they probably got more practice than anybody. They’re big in Europe and now they’re big here and getting bigger, but they’ve been doing it for 30 years, so experience counts, I think. Well, thanks, Schär, for sponsoring this program and for your ongoing support of Beyond Celiac.
Paul, I want to see what your advice would be for people who are newly diagnosed with celiac disease. It's an adjustment, how would you advise somebody, “Hey Paul, I just got the diagnosis.” What are your first bits of advice for them?
Paul Graham: I think my first piece of advice -- I'm going to make a sports metaphor since we’re coming up on pennant races, that season in baseball; and the metaphor that I think I learned from my mistakes and would offer people is that when you're first starting out after that diagnosis try to play as many home games as you can, and by that I mean eat at home. Eat in a space that's safe, eat in a space where you have some control over your food where you don't have to worry about things like cross contamination or hidden forms of gluten -- that sort of thing. I would say, learn to cook. If you don't cook so much, get a good cook book and get the best fresh ingredients that you can afford comfortably and get into the kitchen and get comfortable there and learn to love food again because it is a huge shift.
I am a big proponent of whole food, what you might call real food or unprocessed food; especially when your gut is in a state of, like, nuclear winter which it probably is after years sometimes of antibodies wreaking havoc on your intestines. And I think that if you're eating well you will notice the change in a short period of time or a shorter period of time.
The other thing that would say is the biggest mistake that I made when I was diagnosed was that I was shy about it. I didn't want to talk about it - maybe that's a guy thing, I don't necessarily think it is - but I didn't want to talk about it, I didn't want to see my friends. I've never been different really in any way from anybody else and I think that made it difficult for me.
So my other piece of advice is to share what you're going through with your friends and don't be a hero, so to speak. Help them learn how to cook for you if you want to have dinner at their house or something like that and cook for them and try to talk about the experience and what it means and what's safe and what's not safe. Because people really do want to know, they really do care but it's kind of baffling for people who don't have to think about cross-contamination or hidden amounts of gluten. So I think that's what I would tell people who are just newly diagnosed.
Claire Baker: And what about the veterans, those who have been diagnosed for 10 or 15 years, what would share with them?
Paul Graham: Well, I remember reading a while back that the average person in the United States eats only about 10 to 15 different foods in a week, which is a curious distinction and probably a dubious one for a species that's been the called omnivorous. And I know there is vegetarians and vegans and, you know, people that observe other special dietary restrictions in addition to celiac disease; but my feeling is that the best things happen at the table and then after a while you can be on autopilot and you don't necessarily want to be on autopilot. So I would say keep exploring, get good cookbooks, learn new culinary traditions and try to figure out ways to expand and deepen the pleasures of the table and cooking for other people.
Do veterans have the obligation to help people who are newly diagnosed find their way? I think they do and, you know, dropping by a support group and sharing your story especially if you've been successful, I think that could be a big gift.
And then finally, I think I need to say that people who require gluten-free (a lot of them) can't afford products. On average, the mark-up is about 250% compared to the conventional or traditional or wheat-based foods and food pantries are always low in GF supplies. So if you're fortunate enough to be able to donate to food pantries or even research foundations -- that sort of thing. Everybody appreciates food donations and that's a great way to help out too.
Claire Baker: It's a very concrete way to help and that's a -- sometimes you just got to have that thing to do not just to… great advice, great advice. So this might be the final question, if it's not you’ll pretend to have fun, I guess. If you could bring back one gluten-y food to your diet, what would it be?
Paul Graham: Well, I think the obvious one, the easy one is bread and I'm going to edge a little bit here and say that beer has been called liquid bread because it's the same ingredients just different proportions minus the salt. So if I can expand it all to say bread in all its forms (liquid and solid) that's what I would definitely bring back. Even more than that - and I write about this in the book - what I miss most is -- what I think a lot of people with celiac disease who’ve been diagnosed years ago will probably agree -- I miss the experience of being able to walk into a restaurant look at the list of 10, 15 items and know that I can have anyone of them that happens to sound good to me that day as opposed to just like the one or two down at the bottom which you know are probably safe. That's something else too that I would add back into my diet, but that sounds like it's getting greedy because you only asked me for one.
Claire Baker: No, it's an interview – all’s fair. Being able to order off the restaurant menu and not just look at the salads, that would be great. Well, I have your book here; here is your book. The light in here is pretty bright; you might not be able to see it, but tell us where we can find it. Give us details; your websites, all kinds of stuff.
Paul Graham: Well, the details are that it's a hybrid memoir and I use my own story to bookend or frame or contain a lot of things about, first of all, celiac disease, the history, the epidemiology of it, some of the debates and causation, you know, like, is it the wheat? Is it the so-called hygiene hypothesis? Is it something else?
And I also explore the culinary traditions that you leave behind when you go gluten-free, but also the one that you join when you go gluten-free. And these are very, very long deep traditions and they’re not very well-known, so I talk about that.
And where can you get it? It’s basically everywhere, you can find it as an e-book, you can find it as an audiobook and of course it's out in hardback now. There is Amazon, Barnes & Noble. My website is inmemoryofbread.com so it's just the title and you can also find it there and you can read a sample of the first chapter too.
Claire Baker: And if you sign up for a giveaway you can also, perhaps, win a copy. Is that true?
Paul Graham: Absolutely.
Claire Baker: Thanks Paul. That concludes the planned questions. Paul, anything to add before we conclude?
Paul Graham: No, thank you very much for listening. Stay healthy, stay sane.
Claire Baker: You do as well, Thanks so much and thanks for joining us on the Beyond Celiac webcast with our special guest Paul Graham, a memoirist whose recent book, In Memory of Bread is now out there and available and ready for you to read-- you will enjoy it. Thanks everybody.