I had tried a paleo diet for my ulcerative colitis—the Specific Carbohydrate Diet, which had only helped somewhat. Now I wanted to try a vegan one. Perhaps I’d fare better with veganism, as my friend Alison had.
Specifically, I wanted to try a diet called macrobiotics.
I’d first learned of macrobiotics back in May. A friend in California had emailed me a gripping, inspiring blog post by Sarah Yates Mora, a gal who brought her Crohn’s disease into remission with macrobiotics. Mora’s story had stuck in my head, and amidst the ups and downs of my Specific Carbohydrate Diet, I had begun rereading her post. Much of her experience resonated profoundly with me.
i was becoming a shadow of myself, she writes, too weak to do much of anything and too sick to do much about it. i was so scared.
Upon first being diagnosed, she says:
i started googling like it was my job. the more research i did the more scared i got. i learned that crohn’s is an incurable autoimmune disease in the same family as ulcerative colitis…i was horrified to learn that i would live with this for the rest of my life…i was even more terrified by the treatments which my doctor told me were standard, the only option i had: steroids & immune suppressors.
At first, Mora followed her doctor’s advice and tried steroids, but, as had happened with me, they just made things worse.
So Mora decided to deviate from her doctor’s advice and try healing through diet. She says, even though it was scary to veer away from western medicine, i knew that i was facing a quality of life i could never be happy with.
All of this was achingly familiar.
The diet Mora chose, macrobiotics, worked for her. Following her recommendation, I bought Virginia Harper’s Controlling Crohn’s Disease the Natural Way, an engrossing memoir about how Harper brought her own Crohn’s into long-term remission with this diet. I highly recommend the book, which is part memoir and part healing program for IBD. At the time she wrote the book, Harper reported being symptom-free and med-free for twenty years.
There are healing stories like this with the SCD, too. But it seems that some bodies need one diet and other bodies need another, and I hoped that if the SCD hadn’t worked for me, perhaps macrobiotics would. I knew getting into full, long-term remission like these other folks was a long shot, but at the very least, maybe the diet would make my life more manageable.
Macrobiotics originated in Japan. It was brought to the US in the 1950s by Michio Kushi, who was born in Japan and emigrated to the United States. It became a popular health-food craze in the 1970s, with its name referring to its emphasis on whole foods and a whole, balanced lifestyle: “macrobiotic” means “large life.”
This diet is different from the Specific Carbohydrate Diet in almost every way. As with the SCD, many things are to be avoided in macrobiotics, but they’re different things. Added sugar is to be completely avoided, while the SCD allows honey to sweeten your probiotic yogurt. Probiotic yogurt, and all dairy of any kind, is forbidden by macrobiotics. So is meat—no more plain, broiled turkey patties for me! Caffeine and alcohol are also to be avoided, which the diets do have in common. Nightshade vegetables (tomatoes, peppers, and potatoes) are another no-no in macrobiotics, whereas bell peppers are added early in the SCD.
The biggest difference is grains. While the SCD forbids grains of any kind, macrobiotics teaches that each meal should be at least fifty percent grains. And they should be whole grains! This meant that macrobiotics completely departed from everything I’d heard elsewhere about eating during ulcerative colitis flares, from the SCD to Dr. Dahlman’s diet and even the advice of my conservative Western doctors.
Go back to eating whole grain brown rice, which was sure to scrape my inflamed gut with all its nasty fiber? This was madness!
While the SCD consists, at least at first, mainly of meat and animal products, macrobiotics is far less restrictive and mainly includes whole grains, legumes, root vegetables, and seaweed. These differences stem from the diets’ different philosophies about health and healing.
The SCD was designed specifically to heal an injured gut. Its goal is to starve bad bacteria that feed off complex carbs and replace them with good bacteria from probiotic yogurt. Bad bacteria are seen as the main culprit; complex carbs are the culprit behind that culprit. The health of the body is not emphasized—the focus is on the gut, and after the gut heals, it’s assumed that the body will follow.
Macrobiotics, especially in the context of colitis and Crohn’s, also talks about bacteria and the intestinal environment. But the healing strategy is different, with an emphasis on bringing both the gut and the rest of the body into balance.
That “balance” is discussed in terms of yin and yang, the ancient Eastern concepts of opposing and complementary forces. As Harper explains:
Yin makes things more inactive, more passive, cooler, wetter, and softer. Yang makes things more active, more aggressive, hotter, drier, and harder. Yin is associated with the feminine, the moon, and nighttime; yang with more masculine characteristics, the sun, and daytime…
Individual foods and their effects could be understood in terms of yin and yang. Fruit, fruit juice, processed foods, sugar, and alcohol are all yin, which means they create expansion and diffusion… Those influences cause swelling, overweight, the breakdown or decay of tissues, and various kinds of disorders, including skin discharges, nervous system disorders, overweight, diabetes, and Crohn’s disease. Yang foods, such as salt, red meat, eggs, chicken, hard cheese, and fish all create contraction, tightness, and assimilation. If these foods dominate the diet, they give rise to yang diseases, such as coronary heart disease, colon and prostate cancer, and other solid tumors.
It’s hard to directly translate these concepts into Western medicinal thinking. It’s hard, for instance, to understand in scientific terms why “yin” foods might be seen in the East as causing Crohn’s disease.
But the end result of the diet is sound. Macrobiotics fosters balance through eating foods that are seen as neither too yin nor too yang, and those turn out to be whole grains, legumes, root veggies, and seaweed. These foods are all extremely healthy.
(With IBD as well as other diseases, probiotic bacteria are seen as helpful, too—but in this diet, they come largely from miso, a soy product.)
I was mostly on board with what Harper described, although I did sometimes get caught up in the seemingly dubious explanations for why this diet might work.
Yin and yang intrigued me, but other concepts seemed a bit more…esoteric. Proponents of the diet often talk about acidity, saying that health problems are caused by over-acidification: meat and dairy and certain other foods require uric acid to be digested, and that acid supposedly builds up, acidifies the whole gut, and causes damage and thus illness. The “balanced” foods mentioned above are also seen as more “alkaline,” or neutralizing in terms of pH. The body supposedly doesn’t have to work as hard to maintain its natural balance when digesting them.
But studies have shown that the body’s acidity levels are, in fact, highly stable. “Alkaline” food and water—which is expensively sold to those following alkaline diets—generally have little effect on our acidity.
Michio Kushi also notoriously claimed that macrobiotics could cure and prevent cancer, which became especially problematic when both he and his wife eventually died of cancer.
Then there were statements like the one I read in a book by Kushi himself, in which the reader was advised to stir food in a clockwise direction in order to increase the food’s energy. The more I thought about this, the more skeptical I felt. I mean, should the direction be reversed in the Southern Hemisphere? And what should you do if you’re on the equator—stir side to side?!
My scientific mind just could not stomach everything macrobiotics came up with. Perhaps I just wasn’t yet ready to let go of my Western logic.
But this diet clearly worked for some people’s IBD. And while it wasn’t likely to cure cancer, it was obviously a very healthy diet. The same article that debunks the thinking around alkaline diets concludes that these diets are still quite healthy—just not because of their alkalinity. I decided that, although proponents must not fully understand all its mechanisms, what mattered most was whether this diet would work for me. It didn’t really matter why.
(Then again, it does matter why, if you want to understand your disease!)
The diet’s overarching philosophy was about not going to extremes. This I liked. Since refined grains release glucose rapidly into the bloodstream, they are to be avoided in lieu of whole grains, which take longer to digest and thus generate a slower, more balanced release of energy. That made sense.
I described the macrobiotic recommendations to my mom and sister over email. “Coincidentally,” I wrote, putting the word in quotes, these also happen to be the healthiest foods by Western standards too: whole grains, legumes, and veggies, especially root veggies for people with IBD. It’s basically a vegan and largely wheat-free diet. I figure, even if the diet doesn’t work, all of the above will be really healthy in the meantime!
Despite other diets’ admonishment to stay away from whole grains and legumes during a flare, macrobiotics insists that an inflamed gut can still digest them. They just need to be pre-soaked (especially legumes), well cooked, and possibly pulverized in a blender.
It’s also noteworthy that pre-soaking and/or fermenting grains and legumes makes them easier to digest in general, not just for people with IBD. Paleo advocates often point to these foods’ phytates as a reason to avoid them, since phytates can inhibit the digestion of some minerals. But soaking, sprouting, and fermenting these foods removes their phytates so that we can all digest them and gain their significant nutritional benefits. Sally Fallon, author of the popular Nourishing Traditions cookbook, argues that traditional cultures always soaked or fermented grains before eating them. The reason they’re problematic to so many people in modern society, she says, is that we no longer prepare them in the same way.
Another thing that helps with digestion is chewing. Macrobiotics’ trademark is extensive chewing: proponents advocate chewing each bite thirty to fifty, even up to a hundred, times. They say that because saliva is alkaline, it will help alkalinize the digestive process, reducing the stomach acid that will be needed to digest each bite. While, again, the logic of alkalinization doesn’t fully compute, it did make sense to me that the more work my mouth and saliva did, the less my gut would have to do to. That seemed like a good thing!
Along with diet, macrobiotics also recommends calming lifestyle practices like meditation, therapy, massage, and keeping a simple, tidy house. Those pieces seemed like good ideas, but they would be harder for me. I was about to move across the country. My apartment would be in disarray for the next couple weeks, and it would be pretty hard to book massages or therapists when I didn’t even have health insurance yet in Oregon. I decided to focus on the diet, which was obviously most important for my disease.
I was nervous and excited about switching to macrobiotics. Although the SCD had only partially helped my colitis, it had helped—I was still feeling better than I had before going on it. Since I was now off all my meds, diet was my medicine. That made it scary to tinker with.
But, weary as I was of my now-familiar roller coaster of hope and disappointment, I couldn’t help thinking my same hopeful thought yet again about macrobiotics: Maybe this will cure me. And I was excited at the idea of eating whole grains and legumes again. I hoped the diet would work, so I could finally eat healthy for the first time in months.
I didn’t start macrobiotics cold turkey, so to speak. Unwilling to waste food, I did a slow transition, eating my way through the last of my probiotic yogurt, mushy carrots, and turkey patties while beginning to add well-cooked whole grain brown rice, seaweed, and miso soup into the mix.
For breakfast on the day I broke my diet, I made a simple miso soup, with daikon radishes and carrots, some brown rice noodles for starch, cubes of tofu for protein, and a glob of miso mixed in after boiling. (Miso is probiotic as long as it’s not boiled.) For lunch and dinner I suddenly had a whole world of ingredients open to me. I added brown rice and tofu that day.
The results, at first, were unpleasant. I was already in a flare—ever since finishing prednisone two weeks earlier, I’d had three bowel movements a day, all of them urgent, explosive, and bloody diarrhea. That first day, I went from three BMs to five. The next day was not much better, with four BMs.
On the third day of macrobiotics I had only two BMs…but by then, my colon pain was beginning to return for the first time in weeks. And the next day I had four BMs again, and more pain and discomfort than I’d had in a long time.
Bad day, I wrote in my food log that fourth night. Exhausted most of day—awoke early for dentist, argued with Ron and cried several times in frustration (with Ron, with illness); Ron took care of me and packed; he gave me milk of magnesia in bed and helped me sleep. Headache as evening wore on.
My struggle continued—the headache persisted the next day. As it moved around the sides of my head and down to my neck, it dawned on me that this was my first-ever migraine. I’d heard about them, but had been spared them all my life.
Only now did I grasp what sufferers go through. The crippling, debilitating pain. The need to shield oneself from all light. The inability to think, stand, watch TV, or read. Throbbing, pulsing waves of pain came and went throughout that day and the next. Fortunately, the pain subsided long enough for me to attend the farewell gathering we’d organized for friends on our back lawn, but then it returned and sent me reeling back to the couch. Around me, Ron cooked, ran errands, and began boxing up our apartment.
And yet, despite my obvious downturn since the diet had begun, by now I was beginning to feel strangely optimistic about it. Although my colitis symptoms had largely worsened, a spark of hope was blossoming within me as I witnessed a few more positive shifts in my body.
On that fifth day, I’d again had only two bowel movements. And although I was generally tired from my headache, I noticed that the energy crashes that had plagued me on the SCD had subsided. I must be digesting the whole grain brown rice, after all! That was exciting. It must be performing its slow-release magic, the best explanation for why my energy felt steadier than it had in months. I felt relieved.
Additionally, aside from my increased gut cramping, the macrobiotic diet felt good in a way the SCD had not. When I ate the miso soup or drank the exotic umeshokuzu tea made from pickled plums and kuzu powder, a subtle burning sensation I often felt in my gut seemed to ease. I had gotten so used to this burning that I didn’t think of it as pain—it was more like a buzzing energy. But whenever it subsided with these soothing liquids, it was like I could actually feel my inflammation going down. Was I imagining it? Somehow I didn’t think so.
I wasn’t sure what was causing the migraine, but I guessed that the change in diet was shocking my system. Hopefully, if I just rode out the discomfort, it would pass.
And it did. It passed on the sixth day of the diet, and as it subsided, slipping out of my consciousness like a tormentor releasing its grip, it seemed to take with it other symptoms. It was as if, once my body had gotten over the shock, it was reordering itself in a better way than before.
The day after my headache eased, I had no blood in my stools for the first time in over a month. The following day, I had only two BMs again, and neither was diarrhea. The same held true the next day. Although there was still sometimes blood, the urgency and explosiveness and diarrhea that had plagued me for months were suddenly gone.
Gone!
Just a week-and-a-half into the diet, I had steady energy, little pain, fewer BMs, and less discomfort than I’d had in a long while.
In fact, in one way, my digestion was actually better than before colitis: I had far less gas. It had taken a while to notice this. At some point, I realized that I wasn’t bloated and gassy after eating, and that those symptoms had been so common in my life, for so many years, that I didn’t even notice them at all. I’d just assumed everyone had them.
Now, though, I noticed their absence. They must have been caused by something I’d been eating prior to macrobiotics: dairy, meat, sugar…? Had I, in fact, been lactose intolerant and just never known? Going about my days without any gas or bloating, I realized I had often been uncomfortable even before colitis. Apparently, my gut hadn’t been as “iron” as I’d thought.
I felt better than I had in months. It was exactly as Virginia Harper had described in her book—macrobiotics was working wonders for my gut.
Dr. Dahlman, the SCD, and my doctors had all been wrong. IBD sufferers do not necessarily have to avoid whole grains and legumes. For at least some of us, they can be tolerated and may even help.
I said all this to Ron in hopeful tones, feeling a brightness in my eyes and a flush on my cheeks. He was beginning to join me on this diet, sure it would be better for him than the SCD. He looked relieved to see me feeling so hopeful, and must also have been relieved that my mood was stabilizing.
I did feel hopeful. Our apartment was nearly packed, the pile of boxes growing in the dining room, books and knick knacks disappearing off the shelves. In a week we would pick up and move across the country to start our new life in Portland. Macrobiotics made me feel like maybe, when we left, I could leave the worst of this disease behind me. Maybe I could get a fresh start.
Is this still working for you? My sister has UC and is really bad off right now. She needs help, lives in NYC.
Hi Allison, thanks for writing. I hope your sister finds relief very soon. The concepts behind macrobiotics are partly still what I follow, but with some modifications that seem to help in my case. I do eat meat, usually red meat or fish, usually high-quality meat without chemicals or hormones, two or three times a week. I also eat eggs now and then. I don’t avoid ghee, butter, or kefir, all of which have little to no lactose and seem to be beneficial to my gut. I avoid large amounts soy, which in my case has turned out to be inflammatory (I hadn’t yet figured that out at the time I started the diet). And while I don’t eat many tomatoes, I don’t particularly avoid other nightshades like potatoes or eggplant. What seems most beneficial to me, with this diet, is the avoidance of irritants like alcohol, sugar, gluten, and lactose; and the emphasis on whole grains, legumes, and vegetables. I do still follow those general precepts, and they are very helpful.
Finally, probiotic foods seem to be key for me (and many others). Here is a post about how I got into my first remission: http://www.katiescolitisjournal.com/remission/
Your story is inspiring me (a UC fighter) to try this diet. Have you read any other books besides Virginia Harpers book? Or did her book give you all the info needed to begin the diet.
Hi Milka, thanks for writing. I did peruse a few other macrobiotic diet books, such as Michio Kushi’s The Macrobiotic Way. But ultimately, I didn’t find any of those books to be more useful than Virginia Harper’s. Her book is 1/2 memoir and 1/2 specifics on recipes, diet principles, and other self-care—macrobiotics is more than just a diet. The book was a good place to start. One caveat is that many of her recipes include a lot of soy, such as “tofu scramble” for breakfast. That may be fine for you, but soy is a common allergen and my understanding is that it can be hard to digest. I do better without it. One more word of advice: There are many “macrobiotic” recipes online, but not all of them are geared towards people with serious health concerns. It might be useful to check out my post on this: http://www.katiescolitisjournal.com/real-macrobiotics/. Best of luck to you in your UC fight!