Seth Roberts: Grandmother knows best about Crohn's Disease

Seth Roberts is the author of The Shangri-La Diet and posts at Seth's Blog about personal science, self-experimentation, and the scientific method.

[Video Link] Crohn's Disease is a type of inflammation of the digestive tract. In most cases, it causes unremitting diarrhea, several times per day. In America, about 1 person in 1000 has it.

According to the National Institutes of Health (NIH) website, the usual treatments for Crohn's are "drugs, nutrition supplements, [and] surgery." The drugs include anti-inflammatory drugs, steroids, immune-system suppressors, and antibiotics. Surgery is common. According to the NIH website, "two-thirds to three-quarters of patients with Crohn's disease will require surgery." Require surgery? Those are strong words. It's a digestive problem, what about diet? No, says the NIH website. "No special diet has been proven effective for preventing or treating Crohn's disease. . . . There are no consistent dietary rules to follow that will improve a person's symptoms." Other authorities agree. "There's no firm evidence that what you eat actually causes inflammatory bowel disease," says the Mayo Clinic. According to the Crohn's and Colitis Foundation of America, "there is no evidence that any particular foods cause or contribute to Crohn's disease."

Reid Kimball disagrees. Reid, who lives in Oregon, designs video games. He grew up in Massachusetts. During his junior year of high school, he came down with Crohn's. It was embarrassing. One day in class, he raised his hand to go to the bathroom. By the time the teacher called on him, it was too late. A few months later, a colonoscopy showed inflammation at the junction of his small and large intestines. The surface should been smooth; instead, it looked cobblestoned.

His gastroenterologist prescribed Pentasa, an anti-inflammatory drug. If Reid had bought it himself, it would have cost $600/month. There's no cure, said the doctor. If Pentasa works, he'd need to take it for the rest of his life.

Pentasa barely worked. It gave him a few more seconds to get to the bathroom. Reid saw his doctor a few months after starting it. Doing better? the doctor asked. Yeah, doing better, said Reid. The doctor did not ask for details. He ordered various lab tests but never learned how little Pentasa helped. Reid saw him regularly for several years, but never told him.

After high school, Reid went to college at the Rochester Institute of Technology. During college, he had diarrhea about six times per day. "Relationships were hard because people misinterpreted why I didn't spend time with them," he says. He didn't look sick, but he was. He often didn't socialize because he was in the bathroom or afraid of having diarrhea in public.

In 2004, after graduation from RIT, he moved to Dallas for a job. Hoping to improve his health, he found a new gastroenterologist. The new doctor prescribed Flagyl, an antibiotic, in addition to Pentasa. After a week of Flagyl, Reid started having extreme abdominal pain. It would be really intense for a few seconds, then die down, then return. He wanted to go to the hospital but was in too much pain to drive.

He emailed his mom about it. She replied that she'd been reading a book (Breaking the Vicious Cycle by Elaine Gottschall) about a diet that had helped lots of people with inflammatory bowel disease. She had learned of it from her mom, Reid's grandmother, who had learned about it from a radio interview. Reid's grandmother had told his mom about it a year earlier but his mom had put off telling him because she was afraid the diet would be too hard.

Breaking the Vicious Cycle describes what's called the Specific Carbohydrate Diet (SCD). A more descriptive name would be the Good Carb/Bad Carb Diet. It was developed in the 1920s by Sidney Haas, a New York pediatrician, to help persons with celiac disease, which in children often causes diarrhea. Before Haas, it was known that persons with celiac disease did not have diarrhea if they ate no carbohydrates. Haas figured out that many carbohydrates could be tolerated. Gottschall's version of SCD says in addition to eliminating certain carbohydrates, you should eat homemade yogurt.

Reid's mother, in her email, said only that certain foods were okay and certain foods were not, and listed a few of each. Reid was impressed and started to eat according to the guidelines. Most of what he'd been eating was off limits, so he didn't eat much. One thing he did eat was minimally-processed deli meat, such as turkey with only water and salt. A week later he came home for Christmas. He read the book. He started eating homemade yogurt and almond bread (made from almond flour). Within 24 hours, he had his first solid bowel movement in eight years. He believes the yogurt was key.

After Christmas, he returned to Dallas. He threw out almost all his food. He had been eating Hungry Man TV dinners, Cookie Crisp cereal, Papa John's pizza, Mountain Dew soda, potato chips, gummy bears, and so on. He stopped drinking milk. He started cooking from scratch. He made omelets and vegetable chicken stir fry, for example. He made muffins with almond flour, sweetening them with honey rather than sugar. He tried to avoid restaurants. When he couldn't avoid them, he'd order a hamburger and eat everything except the bun.

His symptoms were gone. A few months later, he saw his gastroenterologist. I'm doing great, he said, and showed the doctor a list of what he was eating. The doctor showed no interest. Reid asked if he could stop taking Pentasa. (He had already stopped Flagyl.) The doctor said no, let's wait six months. On rare occasions, maybe once every four months, diarrhea returned. It seemed to be caused by eating out, perhaps by bread crumbs in the hamburger. He stopped taking Pentasa. Nothing changed.

In 2006, he moved to San Francisco. To get a colonoscopy, he saw a gastroenterologist at the University of California San Francisco. He told the new doctor that eight years of diarrhea had ended exactly when he started the new diet. The doctor showed no interest. Reid had no symptoms, but the doctor gave him a prescription anyway. "I don't think you can treat Crohn's with diet and Pentasa," he said. The new colonoscopy showed the cobblestones were gone. It did show one abnormality: a narrowing at the junction of the small and large intestine, presumably due to scarring.

In the summer of 2008, Reid found that strawberries caused intense abdominal pain. He attributed this to blockage caused by strawberry seeds. In 2009, abdominal pain became more frequent, happening twice a month. Not wanting to remove more and more foods from his diet, Reid saw a naturopath. She recommended glutamine, an amino acid. He started taking it ($30/month). He found he was now able to eat strawberries and several other foods, such as carrots and spinach, that had previously caused trouble.

Now and then Reid has told others how much SCD helped him — on Facebook, for example. A common response has been If this diet is so good, why didn't my doctor tell me about it? Another response has been Show me a randomized double-blind study that shows this diet works better than placebo. Both facts (no mention by doctor, no study) have the same explanation: The medical system is not purely devoted to helping sick people get better. Great ideas aren't always tested or even noticed.

If doctors are going blind, the vision of those who want help is improving. Gottschall's book, from a publisher you've never heard of, has sold more than a million copies and was recently ranked 894 on Amazon. Not bad for a book published in 1994. To read a few of the hundreds of reviews on its Amazon page is to understand why. "Nothing short of a miracle," says one. If you read them, and fail to see that the diet works at least some of the time, you're not paying attention:

I'm on Day 10 of the diet (followed 98%, I'd say), and I don't have any symptoms of IBS [irritable bowel syndrome] anymore — a disease I had to live with for the last 10 years. Doctors and pills never worked for me, this diet already does.

Yet the diet's Wikipedia page has been challenged — not important enough! There's a Chinese proverb: Those who say it can't be done shouldn't interrupt those doing it. Or delete their Wikipedia page. For his part, Reid is making a documentary about others like himself, who have used unconventional ideas to get relief from Crohn's.

Research related to SCD. CureTogether survey of Crohn's treatments.