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We have all been raised in a culture which we are taught to believe in the “miracles of modern medicine.” We trust that when a doctor gives us a prescription for a new medicine, or tells us that we need an operation, his advice represents the best that medical science has to offer. But sometimes, when it becomes clear that medical science is up against a health problem that it does not understand, and cannot effectively treat, even the most rational patient has no choice but to turn to other approaches to unconventional methods of dealing with that problem.
That is clearly the case with Crohn’s disease, a form of inflammatory bowel disease with a wide variety of debilitating symptoms which can sometimes extend beyond the gastro-intestinal tract. The disease was named after American gastroenterologist Burril Bernard Crohn, who described its symptoms in 1932. Crohn’s disease apparently has a genetic component, because it has become disproportionally prevalent among Ashkenazic Jews, and in the yeshiva community in Israel.
Crohn’s can be difficult to diagnose and differentiate from other digestive ailments, such as irritable bowel syndrome (IBS). The most common symptoms are intensive and recurring bouts of gastric pain and distress, and an inability of the intestines to properly digest their food, leaving their bodies starved for nutrients. Eventually, the damage done by the disease will cause portions of the intestines to close up, creating a blockage, requiring surgery to removed. But surgery does not stop the course of the disease. While powerful medications, including anti-inflammatories, immunosuppressives and corticosterouids, are used to treat its symptoms, they, too, are not a cure, and have serious side effects, limiting their long-term usefulness. After years of treatments with the best doctors and medications available, many Crohn’s patients see little or no improvement in their condition, and are willing to try anything that offers any hope for a cure.
That was the situation which faced Elaine Gottschall in the 1950′s when her four-year-old daughter was diagnosed with ulcerative colitis which refused to respond to standard medical therapy. Desperate, she chanced to meet Dr. Sidney V. Haas, then 92 years old, who, years before, had written a widely used text book presenting his nutritional approach to intestinal healing.
But by that time, modern medicine had passed Haas by, and the doctors treating Gottschall’s daughter were recommending surgery. Gottschall was already frustrated with the inability of the doctors to help her daughter, and decided she had nothing to lose by letting old Dr. Haas examine her. The first question Haas asked Gottschall after examining the girl was “What has this child been eating?” Gottschall then followed Haas’ simple nutritional approach in feeding her daughter, and within ten days, she started showing marked improvement. Within a few months, the girl’s symptoms had subsided, and after two years on the diet, she was totally symptom free.
By that time, Haas had died, and Gottschall was the only one who appreciated the value of his work. She became determined to prove that his approach to treating Crohn’s was medically valid. Through her research into the medical literature, she was able to verify the scientific basis for Haas’ approach, and eventually wrote a self-published book, called “Breaking the Vicious Cycle” to make Haas’ nutritional treatment theories accessible to Crohn’s patients looking for a different answer.
For many years, the medical community remained skeptical, but it also failed to come up with any new approaches that offered hope for a real cure. Meanwhile, more desperate Crohn’s patients read Gottschall’s book, and tried the nutritional approach it recommended, known as the Specific Carbohydrate Diet (SCD). It is an extremely difficult diet to follow, because it calls for the elimination of all sugars and starches. But for a surprisingly large number of those Crohn’s patients who were able to stick with it, the results justified the effort. Many say that they have been symptom-free without medication, and a smaller but significant number claim that they are completely cured.
The theory behind it, as explained by Yitzy Gruen, of Brooklyn, who has been totally symptom free for 7 years after a year on the diet, is that the disease is caused by harmful micro-organisms in the intestines which feed off sugar and starch. The only way to cure Crohn’s is to slowly kill off the micro-organisms by shutting off their food supply. But these organisms are hardy, and any cheating at all on the diet, even something as innocuous as chewing a sweetened gum, can provide food for the germs, and perpetuate the disease. To work, the Specific Carbohydrate Diet must be followed strictly, at all times, with no cheating at all. This requires a lot of determination on the part of the patient, and support and planning by their family members and friends to help keep them going.
Gruen admitted that the first time he tried the diet, he couldn’t stick with it. The body’s adjustment to the diet during the first two weeks is extremely painful, and many patients, like him, can’t get through it. But Gruen said that his Crohn’s symptoms were so serious that he was forced to try the diet a second time, and now knowing what to expect, he succeeded.
Gruen’s doctor was skeptical, but he didn’t try to stop him. However, he urged Yitzy to stay on his medications while on the diet. One key to Yitzy’s success the second time was careful preparation. His wife learned how to cook a variety of foods which meet the strict requirements of the diet. It felt strange giving up eating challah on Shabbos, but defeating Crohn’s was worth it. It also helps when other members of the family are eating the same things, so the patient doesn’t feel deprived. Yitzy learned to take his SCD foods with him wherever he went, and to eat an SCD meal immediately before going to a party or a dinner, so that he wouldn’t be tempted to cheat. It also helps to have another Crohn’s sufferer as a partner on the diet, a sponsor to help support one another at times of weakness.
He emphasized that with the SCD diet there is no margin for error, no tolerance at all for cheating. But the benefits were worth it. After getting over the initial period of extreme pain and discomfort, Yitzy started to feel stronger and healthier. After six months on the diet, he felt confident enough to stop taking his medication, and doing so caused no ill effects. The next time he was examined by his doctor, who pronounced himself satisfied with Yitzy’s progress, he told him that he had stopped taking the medication. The doctor shrugged, unimpressed. Yitzy continued to improve. After another few months on the diet, Yitzy started to cautiously work his way back onto regular foods, one at a time.
When his doctor examined his intestines with a colonoscopy, he could find no signs of active disease. The blockages had cleared up. Long painfully thin because his body could not properly absorb nutrients, Yitzy started to put on weight. Eventually, he came to believe that he was fully cured of the disease. He was able to start eating dairy foods, with no ill effects, even though he had suffered from lactose intolerance since he was a child.
Now, seven years later, promoting the Gottschall diet to other Crohn’s sufferers has become one of Yitzy’s missions in life. He and his wife meet with Crohn’s couples to give them advice and encouragement. There are more like Yitzy, throughout the US and in Israel, who credit the SCD diet with curing of Crohn’s. Today they provide support and resources for those who have tried the traditional medical treatments, and are still looking for something that will work better.
One resource which provides all kinds of raw and prepared foods and ingredients for people the SCD diet is an on-line site: www.digestivewellness.com, It was started by a Crohn’s sufferer named Rochel Weiss, whose personal experience and success with the Gottschall diet parallel’s Gruen’s, and she, too, feels like she is on a mission. Operated with the assistance of members of her family, the on-line store offers a full range of SCD compliant-products, including baking and cooking ingredients, snacks and beverages, condiments and sauces, as well as lots of advice and encouragement for those trying to stay on the diet for the 2 years it typically takes to cure them, if it works.
The SCD diet doesn’t work for everyone. Some Crohn’s sufferers try it, and stick to it, but see no improvement. According to Dr. Stuart Ditchek, who is one of the few doctors in Brooklyn who actually recommends the SCD diet, it seems to work with about 80% of his Crohn’s patients who can stick with it long enough. Apparently there are significant individual variations among those who suffer from the disease, and factors which determine whether the diet will or will not work for them.
There are other types of diets and unconventional treatments that are available for Crohn’s sufferers, but they do not have the successful track record of the SCD diet, nor, in Dr. Ditchek’s opinion, an equally sound nutritional and scientific basis.
Ditchek notes that it is very hard to do a traditional double-blind scientific study of how a diet works, because no two people follow a diet exactly the same way. That is why many doctors are still skeptical of the SCD diet’s effectiveness. But it is hard to argue with the successful results that many patients have had with it, avoiding surgery, and being able to stay symptom free with medication. Even though the results are still considered anecdotal, they are impressive.
Today, Ditchek says, even the most treatment-oriented physician is more open to a nutritional approach, as long it is used in combination with, rather than as a substitute for, traditional medications.
The bottom line, according to Ditchek, is that those with Crohn’s who are able to control their symptoms with medication do have a choice. Staying on the diet is difficult, and it doesn’t work for everyone. However, those for whom medication is not working to control their symptoms apparently have little to lose and everything to gain by trying it.
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