Glenna Crooks

I met Paul Graham courtesy of one of his essays.  Then, we talked by phone and I read – no devoured – his book, In Memory of Bread: A Memoir. Pardon the pun. Paul is a professor of English Department at St. Lawrence University in Canton, NY and on July 1 becomes Department Chair. He focuses on fiction and non-fiction creative writing and lives with his wife, Bec and their German shepherds.

Paul, your book is the best description I’ve read about the challenges of being diagnosed with celiac. Can you summarize what happened? Given your experience, what recommendations would you have for clinicians? Should celiac be suspected more than it is? 

My experience was unusual for people with celiac disease. There’s typically a long path to a diagnosis—as long as six years in the US, which is a long time to be suffering and wondering what’s wrong. My onset was actually pretty sudden. Over the holidays in 2012, I came down with what I thought was a stomach bug. My doctor put me on Cipro, and I took that for a week and still felt awful. Then he put me on another antibiotic, Bactrim, and when that didn’t work, Flagyl.

I was allergic to Flagyl and wound up in the ER, where bloodwork showed that I was severely anemic, though they didn’t know why. They sent me home with iron supplements and basically said, “Good luck, buddy.” No one suspected celiac yet, so I kept eating gluten in the form of things I thought would be gentle on my gut, like toast and pasta. I had no idea I was actually poisoning myself.

After three weeks of this, I ended up in the hospital to stay, because of a G.I. bleed. This was the first time anyone mentioned celiac. The G.I. took one look at me and said, “Hey, I think you have celiac disease; either that or Crohn’s.” I was in such bad shape that I needed blood transfusions before he would do an endoscopy and colonoscopy.

Once I received the biopsy results a week or so later—my intestinal microvilli were badly compromised, and the doctor staged my celiac disease between Marsh III a. and Marsh III b.—everything made perfect sense. I went about making the tough dietary changes I had to make, and within six months, I’d gained back most of the weight I’d lost.

Looking back, I actually see signs of celiac disease all the way back into my 20s. A dermatologist misdiagnosed me with eczema; it was actually dermatitis herpetiformis, which is one of the early harbingers of celiac disease. I had stomach flu-like symptoms usually once a year, when things got stressful. As far as I know, I’m the first in my family to be diagnosed, even though celiac is genetic.

Obviously, my doctors completely whiffed. This despite the fact that my symptoms were textbook. But then, 75 % who have celiac are either misdiagnosed or undiagnosed. So, if you’re a clinician who sees more than a hundred patients in a week, the odds are that some of them may have celiac. In fact, 50% of people in America are at genetic risk of celiac because they carry one of the two genes associated with the condition. The takeaway for both my doctor and I—I interviewed him for the book—is that sometimes the cause is hiding in plain sight. Maybe an elimination diet should be a standard suggestion when G.I. problems are recurrent or chronic. I wish he’d questioned me long and hard about my diet—not just what I was eating, but how much.

Paul Graham

Do you think celiac is a serious disease?

I do. Definitely. Among those who don’t understand it, there can be a tendency to misidentify celiac as an allergy, or, even worse, just a trendy dietary practice grounded in a belief that gluten is bad for you. And it can be deceptive, too, because once a person fully recovers from the damage of celiac disease—intestinal biopsy comes back normal, blood panels are all good—they don’t look like they have a disease. But celiac never goes away, you never outgrow it, and the only cure is to not ingest any gluten.

It’s when celiac disease is uncontrolled, either because the person is undiagnosed or misdiagnosed, or noncompliant, or can’t avoid gluten because products are mislabeled, that it’s very serious. When I was at my sickest, my body was literally starving. My gut was absorbing little to no nutrients. I had symptoms you typically see in an anorexic, including edema in my lower legs and feet. My first night in the hospital, I awoke at two in the morning to find four nurses gathered around my bed. Apparently, my heart rate had dropped to 37, setting off an alarm in the ICU (I was on telemetry). I remember telling them that I was a runner, that I was fit, and that my heart rate was always low, which must have struck them as funny.

Sometimes I remember the things I was doing in a state like that—driving, walking my dog, splitting wood—all because I stubbornly refused to give up my routine even though I felt sick, and I think it’s a miracle that I didn’t have an accident that injured me on top of what the disease was doing to my gut.

We’re disruptive on this site, and not exclusively women because we do have a Man of the Month feature, but you’re disrupting the celiac space, right? I don’t know any man so willing to talk about it.

I hear from women in response to my writing and research far more than I hear from men, but my hope in writing the book is to reach more men, because it’s clear that men are also among the many who are undiagnosed or misdiagnosed. I also hope that writing about my experience will inspire more men to get tested and, if they need to, adhere better to a gluten-free diet. I don’t have any hard data on whether dietary compliance rates are lower among men, but it wouldn’t surprise me if they are.

I think that partly because of that “bro code,” if you know what I mean. It seems to me that a guy with celiac disease may be more likely to go out with his buddies, drink his beer, eat his pizza, and say, “Damn the torpedoes and full speed ahead.” For instance, it’s still difficult for me to gather with my friends at the pub to watch a baseball game.

Beyond the gender element, I hope I’m disrupting our dietary response to the disease. There are some good GF products out there, but there are also some really bad ones, and they’re bad for you, too. GF versions often have more fat, sugar, and salt to compensate for the missing gluten. I wish that we could talk less about GF imitations and more about whole foods. You’re overhauling your diet anyway, so why not take it as an opportunity to learn to cook, expand your repertoire, try new foods? The GF industry is very profitable, and some of those profits go back to research and advocacy organizations, so the market is complicated.

In your book is a compelling description of the history and role of wheat in so many world cultures, and the way that bread and “liquid bread,” which the rest of us call beer, is a force that binds us together. In health care these days, we talk about the “social determinants of health” and know that social connection is a key ingredient in being healthy. How has celiac changed your social life? And, what advice would you have for people whose friends have the condition?

Celiac disease has fundamentally changed the way that I relate to other people—strangers and friends—partly because now I’m sometimes eating different foods than other people, but mostly I have to speak up and talk about my dietary needs in social situations. I have to make clear just how sensitive this disease makes me to cross-contamination. And I have to do this every time food is part of a social situation. It’s essential, and yet at first, I found it very difficult to advocate for myself. Again, I think part of that is gendered behavior, not wanting to be different, or special. But part of it is also just my personality. I had to teach myself to communicate with people in my social circles, and I also had to learn the limits of that communication. You can’t reach everyone, and you can’t have every situation go your way. I go to plenty of work functions, for instance, where there’s nothing for me to eat—or, what’s there is not worth eating. There are only a few restaurants in town where I can safely go out with friends. Traveling is stressful.

On the other hand, my self-advocacy has also rewarded me, because now friends think about me all the time. They cook GF dishes, scrub down their cutting boards, and do everything they can to make me feel welcome. The lesson here is to not go into hiding.

As for advice, I think it helps to practice talking with family members first about the demands a medical condition—any medical condition, really, with celiac or type 1 diabetes or allergies—places on you, and how that condition affects your social experience. Once you get comfortable explaining it to your relatives, it will be easier to talk with friends, co-workers, and acquaintances. Just keep working outward. You need to become a really good reader of the context, the social situation, and use that to figure out how much depth you need to go into, and how firmly you need to advocate for yourself.

I’m curious about the experience of college students on your campus, or other schools you know about. What’s life like for them?

This is, to my knowledge, a pretty big hole in the research right now. I know a few college students with celiac disease, and I know it’s not easy for them. One reason is the social aspect. College is about risk-taking in many different ways—intellectually, socially, athletically—and failure is part of the learning process. The thing is, if you have a condition like celiac disease, and you take a few of the smallest risks to be like everyone else by eating or drinking something you shouldn’t, you’re going to get sick, and that’s going to spiral into your classroom experience. I know because it happens to me. I’ve gotten “glutened,” as they say, and while the GI symptoms are unpleasant enough, the inability to think and concentrate sometimes lasts a week, and I often get sick with a cold or flu right after. The stakes are just higher.

There are also the experiences that so many college students hope to have that are just harder when you bring celiac disease to campus. In the dining hall, you have to be careful and may not have many options, depending upon how supportive they are. If you travel with a sports team, you have to think about food. What if the team bus stops at a pizza place on game day, and there’s nothing for you on the menu? If you go abroad for a semester, how will you negotiate the homestay, the meals out, the language barrier?

Fortunately, many colleges have accommodation offices. They’re getting better at supporting students with celiac disease.

You took us along on your journey as you explored recipes for gluten-free bread and cuisines of other cultures, and one reviewer called you a “scholar of stews and ragouts.” Before your diagnosis, you also made beer and if I recall correctly, despite a search for a good gluten-free beer and attempts to brew one yourself, you’d not yet been satisfied with the quality. It’s been a year since the book was published; have you had any success since?

One of the more inspiring aspects of this disease has been the people I’ve met along the way who are all dedicated to beating the game, so to speak, and making grains like millet, buckwheat, and rice behave like wheat or barley. From a brewer or baker’s perspective, that’s a control of chemistry that borders on alchemy. Maybe even voodoo. There’s a brewery called Ghostfish, in Seattle, which is doing some really exciting things with GF brewing. And there’s a homebrew company with a GF beer kit that I’m going to try.

Where I’ve had the most success, actually, is with homemade cider. I have a friend who has an orchard, and every fall we press the apples by hand with an old-fashioned crank press. Then we add some starter in the form of reduced apple juice and maple syrup. To this, we add our champagne yeast, and we let it ferment. The cider is wonderful, but it’s a real delay of gratification. Whereas you can drink an ale a month after brewing, cider takes about six months to condition. It’s worth the wait, though.

You’re working on a new edition of the book. Can you give us a hint about what new things we’ll find there?

Well, you can’t change too much in a book like this—trade is different from textbook publishing. I want to update some facts and figures, for sure. There is some compelling research about the potential implications of reovirus as a trigger for the disease. Prevalence continues to rise, which is not surprising given that half of the US population has a genetic risk, virtually everyone in the US eats gluten and, as people age, they are more likely to suffer a “trigger event” like an accident or a reovirus experience. It seems worthwhile contemplating just how much of a “pre-existing condition” celiac disease is as the health care debate continues to rage.

In the end, though, this book is about the experience of getting celiac disease, and what that means not just personally, but also historically, gastronomically, and socially. The statistics may change, and new products may make the dietary demands sting a little less, but the meaning of turning your back on 10,000 years of culinary, social and agricultural history doesn’t change.

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3 Responses to “Celiac Disease: A Serious, Life-Changing Condition”

  1. Kathy sanger Says:

    I had a similiar situation of acute onset of symptoms gi, weight loss(40 lbs) which was over time looking back. As a fnp I ashamedly had no thought of celiac..figured colon cancer …but when I sought out my pcp he did labs, stool samples, all within normal. A few weeks ,when I felt worse, I saw another colleague who thought lets do celiac labs . As I was 70, I thought she was crazy..but alas! She saved my life when she called and said “Holy Sh.. do you have
    Celiac!” Everyone in my practice is now very aware of the disease, tests for it much more often, and are very supportive of the patients who must then
    Walk the walk! I love your title re to BREAD,!! Still miss it terribly aftre 2 plus years! But I am very thankful to have been diagnosed within a few months of the acute symptoms.
    I do have severe osteoporosis as a result Im sure ,but have treatment that after 3 spinal fractures..even the endocrinologist didnt think of celiac…passed hx of migraines, allergies, abnormla liverfunction tests…hate speaking of my health , but now a necessary evil. Yes?!
    Sincerely,Thank you for your article

  2. PapayaCare Says:

    Hi, Glenna
    This is a nice blog. Thank you for sharing this great blog and your life experience with celiac disease. You have briefly written you each and every time experience with this danger disease and how you have faced it.
    Really appreciate you.
    Keep posting such more. Would be waiting.

  3. world pharma today Says:

    Thanks for providing Pharma related Information. We can gain lots of info with this. Really good work thanks again.

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