I didn’t have much time to research diets right after diagnosis with IBD. A few days after learning I had colitis, I flew to Morocco for my honeymoon, and since my doctor hadn’t made a big deal of my new illness, I didn’t think about it much at first.
But in Morocco and Spain, to my growing alarm, my symptoms worsened. When I returned home and realized with a shock that I had a serious, lifelong disease, I began doing more research. Now encountered far more advice about diet.
Since my doctors were offering little guidance, I waded into the confusing world of conflicting online recommendations. There are a lot of diets that claim to help IBD. Many of the diets have little in common with each other, except the universal advice to avoid caffeine and alcohol and to avoid fiber during flares. I’ll go into the various diets in later posts, because the question of what to eat would become a constant for me in the years ahead. But this post is about my initial research and my first experiment.
Microflora and food lists
I started with two of the most popular books Google could find for me: David Dahlman’s Why Doesn’t My Doctor Know This? and Tracie Dalessandro’s What to Eat with IBD.
Dahlman, a chiropractor and nutritionist, writes that IBS, IBD, and related gut problems are all caused by the disruption of our gut microflora. I had heard of these little critters before—in the five years before my diagnosis, they seemed to be all the rage. I kept hearing that there were trillions of bacteria living inside my gut, over four hundred species of them, and that I actually needed them to digest things properly.
Dahlman says modern medicines, especially antibiotics, can wipe out our internal ecosystems and that abnormal bacteria, yeast, or parasites can also throw things off. Diet, too, may play a role in disrupting the normal gut biota.
I didn’t trust everything Dahlman said, as you’ll see below. His claim about microflora causing my colitis seemed premature; it was outside the realm of what had been conclusively shown by science. Still, I appreciated his explanations of digestion and the microbiome. At this stage in my learning process, I was soaking up all the info I could get.
Meanwhile, Dalessandro, a Crohn’s patient herself, writes about her own doctors’ take on diet: I asked about diet…but all they could tell me was that my diet would be based on trial and error. Frustrated with this incomplete answer, she went on to become a dietitian and nutritionist specializing in IBD. Her recipes are based on her own research and experience.
Both books offer detailed lists of fruits, veggies, and grains that, the authors say, either soothe or hurt the intestines and colon for many people with IBD. Among grains, the wholer the grain, the more it will hurt—whole grains have more insoluble fiber, which goes undigested and scrapes the inflamed colon. Similarly, legumes are hard to digest and should be avoided, these authors agree. And cruciferous vegetables, like cabbage, broccoli, and cauliflower, can cause gas and should be avoided as well. Along with these principles, Dahlman also recommends avoiding gluten and dairy.
Hope and despair
It was heartening to have a starting place with diet, but as I read, I felt a now-familiar suffocation drape back over me like a thick blanket. This was going to completely change the way I ate, at least for the next few weeks. Hopefully only for a few weeks. But by now, I had noticed that online IBD forums were filled with people whose symptoms never fully went away. I sat with Ron on the couch, his arms around me, and read passages to him in a shaky voice.
All the healthy, whole-wheat pastas and breads Ron and I had bought for years? They’d have to be discarded in favor of the unhealthy ones I’d been trying to avoid: white bread and refined pasta only.
Fruits and veggies were to be peeled and cooked, eliminating many of their nutrients, not to mention the enjoyment of eating things that weren’t mushy.
And there’d be no more black bean chili and red lentil soup, two of our staples. I was to stick with good, old-fashioned meat, something else I’d long avoided eating in large quantities due to its environmental impact, increased risk of cancer, and expense. We were both conservation scientists by training; many of our friends were vegetarians.
I kept detailed lists of what Dalessandro and Dahlman said I could and couldn’t eat, and I wandered the aisles of our grocery co-op with new eyes. I discovered new staple foods that I started eating regularly. White rice, eggs, meat, sauteed spinach, almond butter, avocados. To my relief, I could still eat bananas.
I ate a lot of bananas.
Despair sometimes threatened. I already felt isolated by the embarrassment of my symptoms, and my isolation skyrocketed once I stopped eating what the people around me were eating. Food isolation is a unique form of loneliness.
As I struggled with all this, I tried to see a silver lining. I had often been lazy about diet in the past, eating too much mac n’ cheese and other pasta, treating food as an afterthought in my busy life. Colitis was going to force me to be more intentional about food than ever before. It was something I had long wanted to change about myself.
The Legend of the Self-Cured IBD Patient
I would try this new diet for a month or so. It wouldn’t work.
As I would learn later, many of Dalessandro’s and Dahlman’s recommendations were wrong, at least for me and many others. Caffeine and alcohol should indeed be avoided during flares, but it is possible to eat whole grains and legumes. Many people can tolerate them if they’re made more digestible by fermenting, overcooking, and blending them. It’s actually possible to eat fairly healthy during a flare.
Even at the time, however, there were things that made me wary of Dahlman’s book in particular. It was the first place I encountered something I would come across many more times in the years that followed: the Legend of the Self-Cured IBD Patient.
Dalhman claimed IBD can not only be soothed but can actually be cured, without any conventional medicine, through diet and lifestyle alone. In years to come, as much as I always longed to believe such claims and even did sometimes believe them in periods of earnest and desperate hope, I would come to view them as elusive and mythical.
I’m certain there are actual, real people who’ve gotten their IBD into long-term remission through diet and lifestyle alone, but I’m also convinced they’re the exception rather than the rule. They’ve earned their remission through cleverness, hard work, and sacrifice, but they’re also lucky, because their bodies have responded especially well to diet and lifestyle. For every one of them, I suspect there are hundreds more who’ve worked just as hard, only to find that they can’t achieve remission without conventional meds. I firmly believe that no IBD patient should see themselves as a failure for needing medicine to stay well.
I’m especially wary of claims that a practitioner knows what will work for every single patient. And even as a newbie to colitis, when I read Dahlman’s book, I felt a growing surge of mistrust rise up inside me, because he was also selling something—something expensive.
Dahlman’s gut-healing solutions are to 1) eliminate problematic foods from the diet so that the gut can heal, and 2) take enzyme supplements that are sold on his website. Digestive enzymes are often weakened in people with diseased guts, he explains. This may be true…but I distrusted his total dismissal of the medical establishment, and his logic sometimes escaped me. If my gut bacteria were the problem, then why would I be missing digestive enzymes? Weren’t those produced—as I was learning from all my reading—in distant places like the pancreas and the small intestine, which in my case should be fine?
The last straw was when I signed up for a free cost estimate on his website. I calculated that his program would cost me $400 a month in enzymes alone.
So I didn’t buy anything more from Dahlman. But I still did appreciate his explanation of what might have caused my colitis. My doctors would only tell me that no one knew, and not to dwell on it, while Dahlman’s possible culprits actually made some sense.
Maybe my gut bacteria were out of whack. I hadn’t taken antibiotics for years, rarely took any over-the-counter meds, and doubted I’d been exposed to many parasites lately. But maybe I’d done something wrong in my diet, and maybe diet was a key to getting my health back.
While Dahlman and Dalessandro’s diets ultimately didn’t help my colitis, their books were stepping stones on my path to better understanding my gut.
I so appreciate your writing about this journey you’re on. It helps me understand, it teaches and makes the whole thing human and real – not just a ‘diagnosis’. <3 Love you Katie!!