Counseling Sheet

Agatha M. Thrash, M.D.
Preventive Medicine

The word "celiac" comes from a Greek word meaning "suffering in the bowels." The most important diseases to understand are those for which there is a specific and effective treatment. This is the case with celiac disease, an intestinal disease first established in 1950. A failure to make the proper diagnosis and institute treatment may lead to chronic ill health and arrested development in children.

Celiac disease involves the first part of the small intestine in which there is an abnormal bowel lining caused by a permanent intolerance to gluten, the germ protein of wheat, rye, and some other cereals. Removal of gluten from the diet leads to a full remission, both of symptoms and in many cases of the abnormal bowel lining. Celiac disease is a life-long disorder affecting both children and adults. It is usually first discovered in childhood, but may not be recognized until advanced adult life.

Celiac disease is found most often in countries where wheat is a staple food: Britain, Australia, and North America. It is rare in Negroes and Orientals, and most children suffering from it are of European origin. In different parts of Europe the disease occurs from about 1 in 2000 to about 1 in 6000 persons, but in the west of Ireland there may be as many as 1 in 300; therefore genetic factors appear to be important in describing the incidence. Celiac disease may occur in more than one member of the same family, although usually there is no family history.

Gluten is a large, complex protein molecule containing four classes of proteins: gliadins, glutinins, albumins, and globulins. Gliadin is the alcoholic glutamine and proline rich fraction of gluten containing 40 different components. Apparently this portion of the gluten molecule contains the fractions toxic to celiac patients, and is present in rye, wheat, and barley, but not in rice, corn, or millet. The toxicity is apparently due to a small bowel peptide which is resistant to protein cleavage by enzymes. It may be that a specific enzyme deficiency is the cause of celiac disease, but a second theory postulates that the disorder is immunological; a third theory is that celiacs have a difference in cell membrane structure leading to differences in membrane affinity for, or permeability to gluten.

To make the diagnosis of celiac disease, strong evidence in favor of it is the disappearance of symptoms when gluten is removed from the diet, and the reappearance of symptoms when wheat, rye, or barley are eaten. A biopsy of the jejunum can confirm the diagnosis as it shows damaged surface absorptive cells from the mucosa of patients still eating gluten. These cells revert toward normal after gluten is withdrawn from the diet. Giardiasis (caused by a protozoan parasite) can also cause similar injuries to the small intestinal lining, as can cow's milk protein intolerance, soy intolerance, tropical sprue, protein-calorie malnutrition, and acquired hypogammaglobulinemia.

Immunologic abnormalities do occur in patients with celiac disease, such as the alteration of certain antibodies in the blood (IgA levels elevated and depressed IgM levels). These return to normal on a gluten free diet. In some children there is a low serum complement level that returns to normal on a gluten free diet. A history of asthma, hay fever, eczema, and auto-antibodies are more common in adults who have celiac disease.(1)

The first portions of the small bowel are most severely affected, and since gluten is completely digested by the time it reaches the ileum, it is not usually affected.

The onset of symptoms begin in most children under one year of age and peaks between 7 and 12 months. A trend toward an earlier introduction of cereals into the diet is associated with a trend to an earlier age of diagnosis of children with celiac disease.

Other symptoms are diarrhea, failure to thrive for no apparent cause, vomiting, weight loss, appetite loss or excess, short stature, distended abdomen, loss of interest and energy, irritability, abdominal pain, frequent respiratory infections, sleep disturbance, muscle wasting, pallor, constipation, mouth ulceration, and sometimes skin infections and rectal prolapse.

Intolerance to cow's milk is also important to some children with celiac disease. Diabetes mellitus is more common in patients with celiac disease than the general population.(2)

Most of the complications of celiac disease are due to malabsorption. Vitamin B deficiency occurs in children with celiac disease. The absorption of vitamin B12 was shown to be significantly decreased in infants with celiac disease as compared with controls.(3) Rickets and osteoporosis (thinning of the bones) may develop due to malabsorption of fat soluble vitamin D. Low blood calcium accompanies rickets and may produce muscle twitching and loss of sensation on the skin. Anemia, liver damage, and low blood proteins may occur, and in adult life persons may develop cancer. Lymphoma of the small bowel has been described, as well as other malignancies, gastrointestinal cancers, and others.

Some authorities recommend removing barley and oats from the diet also, but it has not been proven that these two cereals are also toxic. Twelve percent of celiac children were shown in one study to be upset by oats.

Foods allowed to celiacs include breads made from rice, corn, millet, and buckwheat, and cooked or commercially prepared cereals made from these four grains. Commercial products such as puffed rice and puffed millet, rolled corn, and tapioca products are all helpful. Margarine and mayonnaise may be used, as may all fruits and vegetables. One must be careful to avoid coffee substitutes prepared with malt, wheat, rye, barley, or oats, and to avoid thickenings in desserts, soups, and candies. Breaded meats as well as canned chili, frankfurters, and hamburgers must be avoided, as these may contain meat extenders in the form of gluten. Bottled meat sauces may be thickened with gluten-containing grains, as can flavoring syrups, cocoa mixes, gravies, sauces, etc.In the treatment of celiac disease it must be recognized that the evidence of success in treatment is the recovery of the patient. If the patient is unwell on his diet, however official and highly recommended it may be, it is not adequate for him. One must continue to experiment with diet until the symptoms of this disorder disappear. We recommend that all foods likely to cause sensitivities or allergies be removed from the diet for the first two weeks to make certain this is not a part of the disability suffered by the patient. Prepare breakfasts from fruits and gluten-free whole grains, and lunches from vegetables and whole grains. Make supper light, served early, and composed of a small serving of well cooked rice and dried or fresh fruit. Omit for two weeks the foods most likely to cause food sensitivities.The mother may find that she can handle the family food better if she puts everyone on a gluten-free diet. The patient, however, will need to be much more strict than will others in avoiding any kind of commercial food which might contain gluten. Eating out represents quite a hazard to the patient who must be gluten free, as well-meaning cooks can overlook areas where a small amount of gluten might be included in the diet.

Banana is a good source of carbohydrate for children with celiac disease, and may be used as the fresh fruit, as frozen popsicles, blended with other fruits to make fruit smoothies, blended with other partly frozen fruits, as dried banana chips, and as a fruit leather dehydrated in the oven. A cookbook such as EAT FOR STRENGTH can be a great help. Bananas may be mixed with pineapple juice and well-cooked millet and blended to make a millet pudding.

Millet burgers may be made from cooked millet, celery, and various herb seasonings such as sage. Millet bread may be made by cooking millet as oatmeal is cooked, placing it in refrigerator storage containers, and unmolding after cooling. Slice, roll in shredded, unsweetened coconut, and bake in the oven. Use with a spread such as oven dehydrated fruit sauce or nut butters.It must be remembered from the beginning of life that grains must be well-cooked in order to be the most healthful. Breads should be cooked long enough for the starches to undergo a good degree of dextrinization. Yeast breads should be light and dry - never moist and sticky.

Cereals should be cooked gently in water for 1-3 hours or more. Improperly cooked grains are less digestible than well-cooked grains. Rolled oats should be cooked about an hour, and quick oats about half an hour.

It is not a good practice to begin the feeding of solid foods early in infancy. Breastfeeding is ideal as the only food for infants until the age of six months. At that time a few fruits can be added one at a time, about every five days. Beets, carrots, and green peas can be slowly introduced. Cereals, well-cooked and blended finely can be given in very small quantities - just a spoonful at first. Only one food at a meal is best, used as a supplement for mother's milk.

1. The Lancet, January 17, 1976.

2. Smith, John Walker. Disease of the Small Intestine in Childhood, Second Edition. University Park Press, Baltimore, 1979.

3. European Journal of Pediatrics 132(2):71, 75, October, 1979.