Celiac disease is a chronic digestive disorder affecting genetically susceptible individuals. It goes by many names. It is also called celiac sprue, non-tropical sprue, malabsorption syndrome, gluten sensitivity, or gluten-sensitive enteropathy. In celiac disease the absorptive surface of the small intestine is damaged when gluten-containing grains are eaten. What happens is that the villi, small hair like projections that greatly expand the capacity of the intestinal surface to absorb nutrients, are flattened. So the body is unable to absorb the nutrients – protein, fat, carbohydrates, vitamins, and minerals – which are necessary for good health.
We use the term “gluten” to refer to the damaging protein involved in celiac disease, but this term is not scientifically accurate. There are actually separate proteins in each of the gluten-containing grains: gliadin in wheat (including all forms of wheat, such as triticale, spelt, durum, and kamut), secalin in rye, and hordein in barley (including malt and malt flavoring). Oats used to be included in this group, but European studies have shown that most celiacs can tolerate avenin, the protein in oats, although a small subset of celiacs do react also to oats. We don’t know why they react to oats when almost all other celiacs can tolerate this grain, as the reason for this sensitivity has not been identified. However, an important fact to be aware of is that commercial oats are not considered gluten free due to cross contact with wheat in the field, during transport, or in the milling process. Therefore, it is recommended that newly-diagnosed celiacs wait until they have experienced a return to health on the gluten-free diet, perhaps a year, before trying oats, and then they should use only oats that is certified gluten free and start with a small amount.
The symptoms of celiac disease are as varied as the nutritional deficiencies caused by the lack of absorption. The most common symptoms include chronic diarrhea or constipation, pale and bulky stools, abdominal cramping, intestinal gas (flatulence), distention and bloating, anemia, fatigue, weakness, lack of energy, weight loss, depression, irritability, and growth retardation in children.
Initial screening for celiac disease is by antibody blood tests. Positive blood test results call for the most definitive test we currently have, the small bowel biopsy. A small tube, an endoscope, is passed down the throat, through the stomach, and into the small intestine where twelve to fifteen small tissue samples (biopsies) should be taken. If only a few biopsies are taken while damage to the villi is scattered and patchy, an incorrect diagnosis might be made. If partial or total villous atrophy is found, the patient is placed on a gluten-free diet. If improvement of the patient's health results, a diagnosis of celiac disease is confirmed.
The gluten-free diet is the only treatment we have for celiac disease. This means that the diet of patients with celiac disease must be strict, involving complete, lifelong avoidance of all products containing gluten.
Celiac disease may strike at any age, from babies who have just been introduced to foods containing gluten to the elderly. But once diagnosed, it is for life. Children cannot outgrow celiac disease. The saying “Once a celiac, always a celiac” is all too true.
Upon diagnosis, people with celiac disease are often intolerant of milk. This lactose intolerance results from inflammation in the brush border of the surface of the small intestine, which can create a deficiency in the lactase which digests the milk. Fortunately, with healing of the intestinal surface, the lactose intolerance usually goes away. But it may be wise to avoid milk for a time when going on the gluten-free diet.
During this period of healing, patients may require vitamin and mineral supplementation as well, as determined by their doctor. It is also a good idea to get a bone density evaluation to check for possible bone loss due to calcium malabsorption. Some doctors advise testing right after diagnosis to see if you have suffered bone loss and to determine whether you might possibly need immediate treatment. Other doctors prefer to delay scheduling this test for a year or two, to first allow maximum beneficial effect to your bones from the gluten-free diet. Children, in particular, have shown an ability to recover from the effects of calcium deficiency and resume normal growth. Discuss the timing of your bone density test with your doctor to determine whether you should have one now or whether it should be scheduled after you have been on the gluten-free diet for a while.
The gluten-free diet is not simple. Gluten is hidden in many food products. Simply looking for wheat, rye, or barley among the ingredients listed on food labels will not be sufficient. Many innocent sounding ingredients may contain gluten. For example, “seasonings” may include a gluten-containing grain or grain derivative. We call such ingredients “questionable”, meaning that we should question the manufacturer to determine exactly what is included in them. The manufacturers use these terms so that they can switch ingredients to the lowest cost provider without the expense of changing the ingredient listing. This means that we must be alert and check frequently with manufacturers on the gluten-free status of their products.
Our task of checking labels for gluten has been made easier by the Food Allergen Labeling and Consumer Protection Act, which requires wheat, as one of the top eight allergens, to be declared on all food labels. More information on this Act is available from our Celiac FAQs page.
So, as you can see, the gluten-free diet is a lot more than just eliminating familiar bread, pasta, cookies, cereal, and breaded fried foods. Fortunately,the celiac community, including our support groups, can help you learn how to go gluten free and stay gluten free.