Patients suffering from Crohn's disease say diet can help their pain. But doctors ask: Show us the proof

By FRANCESCO FIONDELLA

After suffering from stomach cramps and diarrhea for almost two years, Rachel Turet says a diet has solved her health problems. Now her biggest problem has been convincing doctors it works.

Ms. Turet, a 55-year-old from Deer Park, N.Y., suffers from inflammatory bowel disease, or IBD, a debilitating condition that robs the body of its ability to efficiently absorb nutrients. An estimated one million to two million Americans have IBD, which can cause chronic stomach cramps, diarrhea and intestinal bleeding. The two most common forms are ulcerative colitis -- where the large intestine becomes inflamed -- and Crohn's disease -- where inflamed tissue can be found anywhere in the digestive tract.

IBD shouldn't be confused with irritable bowel syndrome (IBS), which is a more common but much less serious condition that produces neither inflammation nor intestinal bleeding. In addition, people with IBS often can manage their symptoms by changing their diet and reducing their stress level.

There is no cure for Crohn's disease, though. And the only way to cure ulcerative colitis is to remove the patient's colon. Conventional therapy for either form of IBD calls for either taking steroids, immunosuppressive drugs or "maintenance" drugs such as sulfasalazine. But steroids can lead to osteoporosis, and some of the other drug treatments can cause severe headaches and vomiting.

Seeking an Alternative

Ms. Turet and hundreds of other patients now claim that a controversial, carbohydrate-limiting diet offers the best hope for IBD patients: the "specific carbohydrate diet," or SCD™. "The diet gave me my life back," says Ms. Turet.

But many gastroenterologists are skeptical. Though there haven't been studies on this particular diet, the Crohn's and Colitis Foundation of America, an advocacy group for IBD patients, maintains that research has shown that diet doesn't affect the disease. "Would I go on record and say this diet is not effective? I certainly would not," says William Sandborn, a gastroenterologist at the Mayo Clinic in Rochester, Minn., and chairman of the foundation's committee on clinical research. "But there is no rigorous scientific evidence to show it or any other diet works."

Patients and alternative-medicine researchers have long battled skepticism that diet can treat a variety of illnesses including AIDS, cancer and epilepsy. The failure of the IBD diet to gain widespread acceptance within the medical community is a lesson in the grim financial reality of medical research. Doctors don't accept treatments that aren't validated by controlled studies, and drug companies, which fund most medical research, pay to study pills, not diets.

And so the main source of news and discussion about SCD™ is the Internet, where patients swap information and personal experiences at the currently two dozen Web sites in seven languages dedicated to the diet. Since 1996, Ms. Turet has run an electronic mailing list, where dieters exchange e-mails describing their experiences and offering recipes and support. Newcomers can subscribe to the free service at www.uclbs.org/longislandlistserve.htm. The list has about 800 subscribers and generates 100 e-mails a day.

A Mother's Determination

The diet was first brought to light as an answer to IBD symptoms by Elaine Gottschall, an 81-year-old Ontario resident whose daughter has had IBD since she was four. Ms. Gottschall wrote and published "Breaking the Vicious Cycle: Intestinal Health Through Diet," which she says has sold three million copies.

Although doctors don't know what causes IBD, Ms. Gottschall, who has a master's in nutrition and biochemistry, theorizes that people with IBD can't fully break down complex chains of carbohydrates. Instead, these partially broken chains accumulate in the lower intestinal tract and spur growth of bacteria and yeast there. This creates toxic conditions that damage the cells lining the intestine and trigger an inflammatory response by the body's immune system, she says.

So the diet excludes most complex carbohydrates, such as processed sugars, grains and legumes. Even the slightest bit of these carbohydrates can cause symptoms to flare up. What it does include is homemade yogurt and most kinds of meat, fruits and vegetables.

Going on the diet sounds easier than it is, though. Strict adherence to the diet is challenging and often inconvenient, requiring a significant change in lifestyle for the patient and family members.

Some patients say the results are worth it. When Seth Barrows, 28, tried his first bowl of the homemade yogurt, he said he experienced relief as never before in his 11 years of having Crohn's disease. "So then I ate all the yogurt I had and made another batch, and then another. I would drink it warm, not even wait for it to cool down," he says.

But many gastroenterologists are still waiting for proof the diet works. Although the CCFA spends $7 million annually on research, it currently has no plans to study the diet, says spokesman Bruce Sands, a gastroenterologist at Boston's Massachusetts General Hospital.

Studying the diet would be "devilishly difficult," Dr. Sands says, because it would be tough to monitor patients' compliance. Also, no one has yet submitted a "worthy proposal" to the foundation, he says.

Skeptics say some of the diet's success may be due to the placebo effect, where patients' hope that a treatment will work spurs them to feel better even when the treatment is a fake. For instance, studies involving medication have shown that the placebo effect can be as high as 50% in IBD patients. What's more, doctors say, some patients can naturally go into remission for years.

Do's
• Fresh or frozen beef, lamb, poultry, pork, fish, eggs*
• Vegetables-fresh or frozen, raw* or cooked (with no added sugar or starch)
• Homemade yogurt fermented at least 24 hours
• Natural cheeses with little or no lactose, such as cheddar, Colby, havarti, Swiss, uncreamed cottage cheese (dry curd)
• Fruits-fresh or frozen, raw* or cooked; (with no added sugar)
• Salad and cooking oils (including those made from grains)
• Honey, nuts* and nut flours*, spices of all kinds
• Very dry wine, occasional gin, rye, Scotch, bourbon, vodka, etc.

Don'ts
• Grains, including bread, rice, pasta, cereal, and products with corn
• Processed meats-hot dogs, cold cuts, fast food
• Potatoes (or starchy roots)
• Milk, margarine, soy products
• Chocolate, starches, added sugar, including corn syrup, cane sugar, molasses
• Beer, sherry, cordials, liqueurs or brandy

*These foods are generally added a few weeks or months after starting the diet. They should not be eaten if diarrhea is active.

Source: "Breaking the Vicious Cycle: Intestinal Health Through Diet

'A Major Change'

But even without conclusive scientific evidence, some physicians, saying they have seen the diet work, are starting to prescribe it. Manhattan physician and nutritionist Ronald Hoffman, who says he has treated hundreds of IBD patients, says about 70% have responded well to the diet, and about 30% have improved so much they can substantially reduce their medications.

Dr. Hoffman, who wrote the foreword to the second printing of Ms. Gottschall's book, says the diet doesn't always work, in part because the disease is too advanced in some patients. He says a major cause for failure stems from patients' inability to rigorously follow the diet. "The diet is inconvenient, and represents a major, life-impacting change," he says.

Stuart Ditchek, a New York University associate professor of pediatrics who treats about 25 IBD patients, says that in his experience, 85% of his patients who strictly followed the diet improved. He says many doubting doctors are starting to come around to the idea of the diet, and are now at least willing to consider it. "What you find now is that some doctors will say... 'I'm not sure if it works but you can try it,'" says Dr. Ditchek. "To me that's a victory."

-- Mr. Fiondella is a writer in the New York area.

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