Adults Can Get Celiac Disease, Too

Adults Can Get Celiac Disease, Too

Adults Can Get Celiac Disease, Too

By Kristine J. Krueger M.D.

Can adults get celiac disease? My wife has been recently diagnosed – what is it?

Celiac disease is an autoimmune disorder, whereby susceptible individuals experience a variety of digestive symptoms due to the dietary consumption of gluten. Gluten refers to a type of protein found in many grains: wheat, barley, rye. The gluten in these grains incites an inflammatory reaction in the small intestine, leading to malabsorption and detrimental side effects caused by loss of important vitamins and nutrients needed for growth and maintenance of health. Although celiac disease is usually manifest during childhood, 20% of individuals with celiac disease are diagnosed after age 60. Whereas celiac disease is the most common digestive disorder in Northern Europe (especially in those of Irish descent), it is seen in 1 in 133 persons in North America . Many individuals do not know they have celiac disease, as the clinical signs and symptoms may be subtle. However, celiac disease carries serious consequences, including osteoporosis, neurologic and skin conditions, anemia, and increased risk for intestinal cancer. It is important to recognize the signs and symptoms of celiac disease, and perform the necessary diagnostic tests in order to offer effective treatment and ovoid complications.

Gastrointestinal Manifestations of Celiac Disease

Children usually present with classic symptoms including steatorrhea (fatty loose stools), weight loss, abdominal pain, vomiting and growth retardation. In adult onset celiac disease, clinical symptoms may be mild or absent, and in many cases, celiac is suspected when blood tests reveal iron deficiency anemia. In other cases diarrhea, constipation, abdominal pain, bloating, nausea, vomiting, anorexia, may be predominant and debilitating. The variety in clinical manifestations is undoubtedly related to the intensity of the immune system reaction to gluten, much like classic allergies, whereby one person may swell and itch after a bee sting, and the next person develops anaphylaxis. The symptoms in celiac disease are oftentimes difficult to distinguish from other gastrointestinal disorders such as: irritable bowel syndrome, peptic ulcer disease, motility disorders, Crohn''s disease, or ulcerative colitis. In latent onset celiac disease, signs or symptoms may appear only after environmental triggers such as pregnancy, intestinal infections, or surgery.

Extra-intestinal Signs and Symptoms in Celiac Disease

The principally targeted organ in celiac disease is the small intestine, where glutin proteins are digested. Damaged intestinal cells release another protein called tissue transglutaminase (tTG). It has been discovered that tTG is very antigenic --capable of inciting an intense allergic type response. Some patients with celiac disease will have a characteristic rash across the buttocks or on the extensor surfaces of their extremities called “dermatitis herpetiformis”, so named because it resembles herpetic fever blisters. This rash is intensely pruritic (itchy), with blistering leading to scarring and dark pigmentation. The rash is not caused by skin contact with food containing gluten, but by the inflammatory reaction of circulating sensitized immune cells against tTG. (The skin also contains tTG, which is molecularly similar to intestinal tTG, and so is also targeted and attacked by immune cells.) Other conditions felt to be due to circulating activated immune cells include painful extremities (peripheral neuropathy), psychiatric disturbances, headaches, seizures, diabetes, rheumatoid arthritis, dry eyes and mouth (sjogren''s syndrome), lupus, hemolytic anemia, cardiomyopathy, with fatty liver and elevated liver enzymes seen in 10 to 40% of patients with celiac disease. Many of these conditions abate with normalization of laboratory and clinical symptoms when the patient adheres to a gluten free diet.

Besides the immune mediated consequences due to ingestion of gluten, the inflamed small intestine cannot maintain normal absorption, and patients may suffer significant nutritional consequences including: osteoporosis from calcium and vitamin D malabsorption, dental enamel defects, iron deficiency anemia, folate and B-12 deficiencies, the latter leading to poor balance, memory disturbance, and peripheral neuropathy. Reproductive system disturbances in females with celiac disease include delayed menarche, infertility, low birth weight babies, and poor pregnancy outcomes; males may have low sperm counts or pituitary gland dysfunction.

Diagnosing Celiac Disease

The recommended method of diagnosis of celiac disease requires upper gastrointestinal endoscopy (examination with a flexible lighted camera tube) and biopsy of the small intestinal mucosa. Characteristic histologic findings include shortened or atrophic villi, (specialized absorptive cells) as well as increased inflammatory cells (lymphocytes) in the surface lining of the small intestine. There are laboratory tests that support the diagnosis, especially antibody to tissue transglutaminase, however, serologic testing alone is not recommended for a definite diagnosis. Genetic testing is available, but only helps to exclude possible celiac disease; endoscopic biopsies are still needed to confirm the diagnosis. Also, because there are some other intestinal disorders that have similar symptoms and findings on biopsy, it is most important to review symptoms and repeat upper endoscopy with biopsy after the patient has followed a strict gluten free diet. Screening for the general population or for asymptomatic persons is generally not indicated, however screening for high risk populations is important. The risk of Celiac disease increases ten-fold in first degree relatives, it is therefore recommended to test family members, even if they have “silent” symptoms.

Malignant Risk in Celiac Disease

Individuals with celiac disease are at risk for several types of intestinal cancer, including a rare cancer called enteropathy associated T-cell lymphoma. This lymphoma presents most often in the 6 th decade, and is usually widespread and incurable when diagnosed. There is also an increased risk for the most common type of intestinal cancer called adenocarcinoma, which if detected earlier in life, correlates with improved chance for survival. Cancer prevalence statistics have also reveled that those with celiac disease have an increased risk of throat and esophageal cancer, melanoma (skin) cancer, breast and liver cancer, although the exact reasons are unknown. Most likely investigators will track the increased cancer risks to alterations in the immune system, with these overly aggressive T-cells playing a pivotal role.

Treatment of celiac disease

Lifelong strict adherence to a gluten free diet is the only acceptable treatment for the disorder. Complete avoidance of wheat barley and rye, as well as oats that may be contaminated with these grains, can be quite challenging, as these grains are found in many food products including flours, breads, pasta, and breakfast cereals. Any type of flour, including durum flour, bromated flour, farina, self-rising flour and semolina are not allowed. Also, anything containing “malt” such as malted mild, malt extract, malt syrup, beer, ale, porter, stout, and fermented beverages contain barley and should be avoided. Clear distilled alcoholic beverages such as gin and vodka are safe, but fermented mashes used to make bourbon and whiskeys also contain barley or rye. Additionally, processed foods that may contain wheat, barley or rye include bouillon cubes, many candies, cold cuts, hot dogs, salami, sausages, French fries, gravy, imitation fish, matzo, communion wafers at church, boxed rice mixes, sauces, seasoned tortilla chips or potato chips, soups, soy sauce, or vegetables in sauce. Not only the patient with celiac disease but the family cook and other and family members that help with the grocery shopping must read all labels for foods and medications, and must remain vigilant in identifying gluten free products. Most studies suggest a stronger rate of dietary compliance for individuals diagnosed at a younger age, or with more severe symptoms, compared to those with mild symptoms or older age. Future therapies may include anti-inflammatory or immune system modulators, however, these therapies are experimental at this time.

Symptom improvement does not occur immediately upon avoidance of the offensive grains, because the inflamed and damaged intestinal cells need time to heal. Most patients on a gluten free diet report some improvement in about 4 weeks, however, complete resolution of symptoms may take 6 months or more. Also, even small quantities of ingested gluten may quickly trigger recurrent symptoms, which can be frustrating for patients who are diligently trying to avoid gluten

Dietary advice can be found in books, on the internet, from family and friends, and via support groups. However, a well educated dietitian is invaluable in helping guide patient''s selection of gluten free products, as well as proscribing a less restricted life style, to encourage confidence about food choices in social settings, including restaurants. Dietitians will also focus on maintenance of balanced nutrient intake, and help ensure appropriate nutritional support during childhood, pregnancy or illnesses. It is highly recommended to have routine visits with a registered dietitian at least once yearly, to receive updates and the gluten free recipes, receive assessment for possible vitamin deficiency, undergo bone-densitometry, as well as to help enforce dietary compliance and avoidance of the harmful effects from inadvertent gluten consumption.

Recommended Foods in Celiac Disease

Daily consumption of 5 to 10 ounces of whole grains remains important. There are many gluten-free grains and plant foods including: buckwheat, corn, flax, Indian rice grass (Montina), Job''s tears, legumes (dry beans, peas, lentils), millet, finger millet (ragi), nuts, potatoes, quinoa, rice, sago, seeds, sorghum, soy, tapioca, teff, wild rice, yucca, It is also recommended to consume fresh, frozen, or unprocessed fruits, vegetables, milk products and protein foods such as lean meats, and eggs.

Examples of a whole-grain gluten free daily meals:

Breakfast #1 Whole-grain, gluten free waffle with strawberries and maple syrup, low fat milk or orange juice to drink

Breakfast #2 Egg omelet with low fat natural cheese, and fresh vegetables, rice cake topped with jam, jelly, or fruit preserves, milk or orange juice to drink

Lunch #1 Pizza made with whole-grain, gluten free pizza crust (homemade or ready to eat) topped with low-fat cheese, grilled-chicken, and fresh vegetables. Lemonade

Lunch #2 Black bean tacos made with corn tortillas, clack beans, fresh sautéed vegetables, low-fat natural cheese, topped with diced tropic fruit, lime-juice and cilantro

Snack #1 Low-fat yogurt with whole-grain gluten free cereal or fruit

Snack #2 Whole-grain, gluten-free crackers with hummus or low-fat cheese slices.

Dinner #1 Whole grain or enriched, gluten-free pasta tipped with pesto and chic peas

Mixed greens salad with orange slices, walnuts, topped with olive oil and balsamic vinegar, seltzer water with lime to drink

Dinner #2 Chicken and fresh vegetables stir-fried in oil and spices plain brown or white rice, sorbet topped with fresh fruit, cranberry juice mixed with seltzer water

National Support Groups:

Celiac Disease Foundation (CDF)

Celiac Sprue Association/ United States of America (CSA)

The Gluten Intolerance Group of North America (GIG)


Gluten Free Living: A magazine for people with celiac disease

Sully''s Living Without: A magazine for people with food allergies, intolerances, and sensitivities, including celiac disease

Books and Cookbooks:

Thompson, Tricia. Celiac disease nutrition guide. Chicago , IL , 2006

Case, Shelley. Gluten free diet: A comprehensive Resource Guide, 2006

Fenster, Carol. Wheat free recipes and menus, delicious, healthful eating for people with food sensitivities. 2004

Hageman, Bette. The gluten-free gourmet. (This author has multiple cookbooks over the last 5 years on gluten free cooking.)

Robertson, Karen. Cooking gluten-free! 2003

*Melina, Vesanto, Stepaniak, Jo, Aronson, Dina. Food Allergy Survival Guide. 2004.

Additional Web Sites:

Celiac Disease and Gluten-Free Diet Support

Gluten-Free Drugs

National Institutes of Health (NIH) Consensus Development Conference Statement on Celiac Disease

Kristine J Krueger M.D. is an Associate Professor of Medicine, Medical Director of the Digestive Health Center University of Louisville . She divides her time between patient care, teaching, and research.