This foreword is written from my viewpoint as a pediatrician, nutritionist, and celiac. I and others have benefited from the identification and avoidance of the celiac’s “poisons”—collectively called glutens.
Celiac sprue was first reported in the first or second century by Aretaeus, a Cappadocean. He noted that bread did nothing to stop the wasting away of the sufferers. Samuel Gee accurately detailed the disease in 1888, and prophetically suggested “if the patient can be cured at all, it must be by means of diet.” In 1918, Still lectured that “one form of starch which seems particularly liable to aggravate symptoms is bread.” In 1950, William Dicke, a Dutch pediatrician, reported that the symptoms of celiac disease (CD) “are elicited or aggravated by certain types of flours, especially wheat and rye flours.” Treatment of children with a diet without wheat, rye, barley, and oats spread rapidly and replaced the popular ten-bananas-a-day diet, but it took years before the gluten-free diet was accepted for adults.
The most recent landmark in CD history was 1989, when Holmes and his coworkers reported the signficant reduction of gastrointestinal malignancies and lymphomas as the remarkable benefit of a gluten-free diet in patients they had observed over twenty years.
Gluten-sensitive enteropathy, or celiac disease, is activated by unidentified environmental and genetic factors at any stage of life from infancy to adulthood. CD is characterized by a primary small intestine mucosal injury associated with ingestion of specific protein fractions in wheat, barley, oats, and rye causing malabsorption of most nutrients. Today’s research tends to target the cause to be an unusual, enhanced, complex immune response recognized primarily by jejunal mucosal injury of the small bowel in genetically susceptible individuals, primarily of northern European heritage.
The common clinical CD symptoms are a painful, often rumbling, gassy and bloated abdomen with the classic foamy, foul, pale floating stools, or an uncomfortable nagging constipation with excessively bulky stools, or years of a myriad of vague symptoms of undue fatigue, irritability, anemias—both iron and folic acid—bone pain, burning feet, muscle weakness, and depression or lassitude. Headaches may occur after ingestion of any of the celiac-toxic glutens.
For those celiacs whose disease takes the form of dermatitis herpetiformis (DH), symptoms are a distressing burning, itching, painful outcropping of lesions over the face, scalp, neck, elbows, knees, buttocks, and other specific sites. Seventy to 80 percent of DH individuals, who also have some gastrointestinal injury, will benefit from a gluten-free diet.
Celiac disease has an 8 to 20 percent prevalence—both suspected and unsuspected—at any one time in the sons, daughters, brothers, and sisters of the celiac disease patient. The incidence of the disease in the United States is estimated to be one in every 2,500, with considerably higher figures for Ireland, England, Scotland, and parts of Europe of one in every hundred to one in every 600.
The small bowel biopsy is the standard for diagnosis of the gluten-sensitive enteropathy of CD and DH. A duodenal biopsy may be obtained under direct vision using a fiber-optic endoscope by swallowing a biopsy capsule.
Forty or more alcohol-soluble protein fractions (more specifically called gliadins and prolamins in wheat, known as secalins in rye, hordeins in barley, and avenins in oats) are collectively referred to as “glutens.” These protein fractions are found in the plant kingdom subclass of monocotyledonous plants (monocots), which are members of the grass family of wheat, oats, barley, rye, and triticale (manmade cross of wheat and rye), and their derivatives, such as malt, grain starches, hydrolyzed vegetable/plant proteins, textured vegetable proteins, grain vinegars, some soy sauces, some binders and fillers in vitamins or prescription medications, and some “natural” flavorings.
Rice and corn, other members of the grass family, appear to be harmless. Less common grasses (sorghum, millet, teff, ragi, and Job’s tears) are closely related to corn but have not been adequately studied to determine their absolute safety for CD- or DH-susceptible patients.
A disease controlled by avoiding a particular offending food substance sounds like a snap to handle. But gluten products and byproducts are sneakily ubiquitous in our food chain. Lobbying for complete ingredient lists in food labeling is an ever-persistent endeavor. Many individuals, both scientists and laypersons, as well as active celiac groups in the United States and Canada, deserve our gratitude for their fine work in this area.
A celiac must become an expert in label reading and must reread labels on every trip to the store. It is unfortunately true that companies change ingredients in a product, and an item that may have been safe can change. The fillers and binders in medications, vitamin preparations, and over-the-counter drugs can be a source of gluten toxicity. Ask your pharmacist to call the manufacturer to verify that your medication is a gluten-free product. This is especially important in this age of generic equivalents.
Not all gastrointestinal discomforts are gluten related. Some may be due to food allergies, such as strawberries, shellfish, spices, dairy proteins, nuts, citrus fruits, chocolate, or to a lack of enzymes as seen in lactose intolerance or intolerance to sorbitol (a nonmetabolizable sugar) found in many sugar-free items from toothpaste to chewing gum to apple juice. Bacterial overgrowth in the small intestine, a gastrointestinal malignancy, or a deficiency of pancreatic enzymes must also be considered and treated. You should also remember that the response of the small bowel to many foods can be altered by stresses associated with infections, surgery, cancer, drug therapy, pregnancy, secondary malabsorption from CD/DH, and emotional trauma.
If you are having a recurrent diet-related problem, try to ferret out the offending food by writing down everything you are eating for a week or two. Don’t forget your medications, candy, and all snacks. Note the brand name, the number of times you eat the foods, and the symptoms you may be having.
You should know that CD patients are at a higher risk for contracting severe infectious diarrheas and the complications associated with them. Salmonella, Camphylobacter, and Giardia are but a few such diseases from poorly cooked or stored foods or from water. It is wise to avoid unpasteurized dairy products and fresh cheeses as well as raw or minimally cooked fish, fowl, pork, or beef. Raw honey is not advised, particularly for babies, older persons, and anyone prone to constipation, in order to avoid neurotoxicity and fatalities associated with botulism.
To be a wise, healthy traveler, use only bottled or boiled water or milk, eat well-cooked hot foods, and eat only fruits that you can peel yourself with a clean knife after washing the peel well.
Osteoporosis and dental problems for celiacs may be a result of years of poor intake and/or malabsorption of calcium, phosphorus, magnesium, and Vitamin D and K. Nutritional anemias may be due to poor absorption of iron, plus other minerals and vitamins.
There are other disorders thought to have an immunological basis that are more prevalent in CD patients and their relatives. Such disorders include thyroid disease, asthma, pulmonary diseases, rheumatoid arthritis, Sjogren’s syndrome, serum IgA deficiency, glomerulonephritis, IgA nephropathy, insulin-dependent diabetes mellitus, vasculitis, systemic lupus erythematosis (SLE), ulcerative colitis, Crohn’s disease, liver disorders, polymyositis, scleroderma, and sarcoidosis.
CD/DH patients have found that they are all too often “medical orphans” or are sent to a psychiatrist to be convinced that they are well, when they are actually being poisoned by their gluten-containing diet. The only solution is to be an informed patient, responsible for keeping your diet gluten free. Any local hospital or medical school library will be able to help you get copies of the articles listed here, and reference libraries are excellent resources.
The University of Southern California School of Medicine at Los Angeles has begun a Celiac Disease/Dermatitis Herpetiformis Center for diagnosis, consultation with private physicians and their patients, physician education, and research. It is this approach, and the establishment of other centers such as the Center for Digestive Diseases at the University of Iowa School of Medicine, that will improve the diagnosis and care for CD/DH patients. This should also educate our young doctors-in-training and specialists about CD/DH so that our relatives of the future will not be medical orphans.
More from the Gluten-free Gourmet is a superb guidebook to fine dining and the best of health for gluten-sensitive individuals. A grateful thank you to Bette Hagman for this splendid book. A gluten-free diet is for life!
—Betty Bernard, M.D.
Associate Professor of Pediatrics,
University of Southern California
SELECTED BIBLIOGRAPHY
Books
Cooke, W. T., Holmes G. K. T. Coeliac Disease. (New York: Churchill Livingston, 1984). This an excellent clinical resource for a comprehensive review of CD/DH.
Mearin, M. L., C. J. J. Mulder, editors. Coeliac Disease: 40 Years Gluten-Free. (Dordrecht / Boston / London: Kluwer Academic Press, 1991).
National Research Council. Recommended Dietary Allowances. Tenth edition (Washington, D.C.: National Academy Press, 1989). This can be ordered through any bookstore and is a good addition to your home library.
Medical Journal Articles
Holmes, G. K. T., P. Prior, M. R. Lane, D. Pope, and R. M. Allan. “Malignancy in Coeliac Disease—Effect of a Gluten-free Diet.” Gut 30 (1989): 333-38.
Kelly, C. P., C. F. Feighery, R. B. Gallagher, and D. G. Weir. “Diagnosis and Treatment of Gluten-Sensitive Enteropathy.” Advances in Internal Medicine 35 (1990): 341-64.
Pasternack, A., P. Collin, J. Mustonen, et al. “Glomerular IgA Deposits in Patients with Celiac Disease.” Clinical Nephrology 34, no. 2 (1990): 56-60.
Patel, D. G., C. M. E. Krough, and W. G. Thompson. “Gluten in Pills: A Hazard for Patients with Celiac Disease.” Canadian Medical Association Journal 133 (1985): 114-15.
Trier, J. S. “Medical Progress: Celiac Sprue.” New England Journal of Medicine 325 (1991): 1709-20.
Walker-Smith, J. A., S. Guandalini, J. Schmitz, D. H. Schmerling, and J. K. Visakorpi. “Revised Criteria for Diagnosis of Coeliac Disease.” Archives of Disease in Childhood 65 (1990): 909-11.