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Celiac Disease
Wednesday, 16 July 2003
Monday, 04 December 2006
Celiac Sprue, Sprue, Nontropical Sprue, Gluten Intolerance, Gluten Sensitive Enteropathy

What

Celiac disease is an autoimmune condition in which the body’s immune system reacts adversely to dietary gluten, a type of protein found in wheat, rye, and barley. The ingestion of gluten damages the lining of the small intestine making it difficult for a person with celiac disease to absorb nutrients.

Who

Individuals with celiac disease are genetically predisposed to the condition. It is one of the most common genetic disorders in the United States and Europe. It occurs most frequently in Caucasians of Northern European descent but has been diagnosed in other racial groups as well. It occurs in both sexes but is three times more common in females. Celiac disease is more common in children with type 1 diabetes, Down syndrome, and selective IgA deficiency. The incidence of celiac disease in the United States is about 1 in 250 people. Many people with celiac disease do not know that they are affected because symptoms can be very mild.

Signs and Symptoms

Symptoms of celiac disease vary and are due to age, duration of disease, extent of intestinal injury and extraintestinal manifestations. Damage to the small intestine begins before symptoms develop. Children must be eating gluten for symptoms to develop; therefore, it is not usually present in young infants who are not eating solid foods. Many children will be asymptomatic. Classic Form: chronic, greasy, foul-smelling diarrhea, weight loss, failure to thrive, bloating, gas, vomiting, abdominal distention, muscle wasting, poor tone, and poor appetite. Other symptoms are related to specific nutrient deficiencies. Onset typically at 6-18 months at time of weaning from milk and introduction of solid foods. Atypical Form: Occurs more frequently in adolescents and adults. Symptoms can vary widely and involve gastrointestinal systems as well as other systems. (See extraintestinal symptoms below). Extraintestinal Symptoms: Seen in classic or atypical forms and includes anemia, damage to tooth enamel, irritability, delayed puberty, liver disease, bone disease, recurrent aphthous ulcers in the mouth, itchy skin rash known as dermatitis herpetiformis.

Possible Causes

Certain genes (HLA-DQ2 or DQ8) associated with the immune system are linked to celiac disease. When individuals with these genes eat gluten the body produces inflammatory cells which damage the small intestine. The signs and symptoms will be related to the extent of the damage. It is unclear how these inflammatory cells cause extraintestinal symptoms. If one has a first-degree relative (parent, sibling, or child) with celiac disease, there is a 10-20% chance of that person developing celiac disease. However, celiac disease is not just genetically determined. When the body’s immune system reacts to gluten, the lining of the intestine becomes damaged and food is not absorbed properly. As a result, nutrients including vitamins and minerals are lacking and a child becomes malnourished leading to the signs and symptoms listed above.

Diagnosis

Children with celiac disease may appear thin and underweight for their age on physical examination. Patients with the classic form will often have thin arms and legs and a large belly or your doctor may note one of the extraintestinal manifestations listed above. Initially, a blood sample will be drawn to determine whether antibodies to gluten are present. Antibodies are components of the immune system that fight off infection. Besides making these beneficial antibodies, celiac patients also produce antibodies to gluten because their bodies perceive gluten as harmful. However, some patients with celiac disease will have normal antibody tests. Therefore, although the antibody test is a good indicator of celiac disease, a biopsy of the small intestine is needed for a definitive diagnosis. In the biopsy, a doctor will insert a tube from the mouth to the small intestine and special tools will be used to remove a tiny intestinal sample. If a patient has celiac disease, the normally ridged lining of the small intestine will be flat. A patient showing this intestinal change will be told to follow a gluten-free diet. Depending on your child’s age, your doctor may want to repeat the intestinal biopsy after initiating the gluten free diet to look for healthy intestine.

Treatment

Treatment is a life-long gluten-free diet, which is currently the only accepted treatment for celiac disease. Families should receive counseling from an experienced dietitian. After initial diagnosis, a person may also be advised to take vitamin and mineral supplements and told to avoid lactose. The enzyme that digests lactose (which is found in dairy products) is lacking due to intestinal damage. However, this additional treatment, if needed, is temporary. On a gluten-free diet, the intestinal damage heals and nutrient absorption gradually normalizes. Wheat, rye and barley must be avoided. Oats are controversial since most sources in the United States are contaminated with wheat. A physician should be consulted before eating oat products. Products that need to be avoided include most breads, cereals, and pastas. However, gluten can also be present in foods such as medicines, soy sauce, soups, and candy. Certain terms such as “vegetable protein” or “plant protein” that are used in food labeling usually mean that the product contains gluten. A dietician will help determine what foods are safe to eat. The websites listed below also provide more detailed dietary guidelines and suggested recipes.

Prognosis

On a gluten-free diet, a person can expect to make a full recovery. In most people, symptoms start to improve within two weeks of beginning the diet. At times, the diet may be difficult to follow, but strict adherence is important. At first, a person who comes off the gluten free diet and eats foods with gluten may not notice any problem. However, this food damages the intestine, and the patient will eventually feel sick again. As a result of eating gluten, a child may experience diminished growth or delayed puberty. Additionally, repeated damage to the small intestine is linked to osteoporosis and increased risk for intestinal cancer. It is important that the family of a celiac patient embrace the diet rather than view it as a burden. A child with celiac disease on a gluten-free diet is a healthy child.

Connect with other parents

In the spirit of community and support, Madisons Foundation offers the unique service of connecting parents of children with rare diseases. If you would like to be connected to other parents of children with this disease, please fill out this brief form.

Weblinks

Celiac Sprue Association
Site includes some medical jargon but gives a good overview of the disease and provides recipes, personal stories, and useful contact information. Also has a useful “Cel-Kids Network” which provides tips on fun foods for kids and handling challenges in schools.

National Digestive Diseases Information Clearinghouse
Provides a clear review of celiac disease, suggests a sample gluten-free diet, and gives links to celiac disease organizations.

The North American Society for Pediatric Gastroenterology, Hepatology and Nutrition /Children’s Digestive Health and Nutrition Foundation
Provides information for families and medical professionals. Has a gluten-free diet guide, educational PowerPoint slides, latest updates and news, and links to research in the field.

Mayo Clinic Very comprehensive overview of disease and how to manage it, including diet, self care and coping techniques.

American Academy of Family Physicians
Gives a brief overview of celiac disease, suggests cookbooks, and provides links to support groups.

Celiac Disease Foundation (CDF) represents the needs and concerns of the Celiac community and those yet to be diagnosed.  We strive to increase awareness of this under diagnosed disease and improve the quality of life of those suffering by providing education, awareness and support programs.  CDF patient support provides tools for the celiac to deal effectively with all aspects of the gluten-free lifestyle.

Google Search for Celiac Disease

References and Sources

Anonymous (2001), “Celiac Disease,” from National Digestive Diseases Information Center, www.niddk.nih.gov/health/digest/pubs/celiac/index.htm, Chad N, Mihas AA (2006). “Celiac Disease: Current Concepts in Diagnosis and Treatment” J Clin Gastroenterol Jan, 40(1): 3-14 Garcia-Careaga M and Kerner JA (2004). Chapter 320 “Malabsorptive Disorders” in Behrman RE et al (eds.) Nelson Textbook of Pediatrics, 17th ed. pp.1264-1266. Hill ID (2006). “Management of Celiac Disease in Childhood and Adolescence: Unique Challenges and Strategies” Curr Treat Options Gastroenterol Sept, 9(5): 399-408. Hill ID et al (2005). “Guidelines for Diagnosis and Treatment of Celiac Disease in Children: Recommendations from North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition” J Pediatr Gastroenterol Nutr Jan; 40(1): 1-19.