Celiac disease is an autoimmune disease involving the small intestine in which people cannot tolerate a protein called gluten. Gluten is found primarily in wheat, barley and rye, but may also be in products we use every day, including some medicines and vitamins and even in stamp and envelope glue.
Celiac disease was, until recently, thought to be a rare disease. However, as many as 2 million people in the U.S. may have celiac disease. It is very common among first-degree relatives who have celiac disease. Celiac disease is diagnosed in both children and adults and many people do not have any symptoms. In some patients with the genetic predisposition, the disease reveals itself after an event such as surgery, pregnancy, viral infections or severe emotional stress.
Many people living with celiac disease are undiagnosed for a number of reasons:
The symptoms associated with celiac disease are often attributed to other problems.
While many health-care providers have learned about the disease, they may not think first about celiac disease as a potential diagnosis when presented with the list of symptoms.
Biology of Celiac Disease
In Celiac disease, the immune system damages the lining of the small intestine, the section of your gastrointestinal tract between the stomach and the large intestine.
The small intestine, which is about 20 feet long, finishes the process of digestion, absorbs the nutrients and passes the residue on to the large intestine. The small intestine is lined by tiny, fingerlike protrusions, called villi. These normally allow nutrients from food to be absorbed into the bloodstream. Without healthy villi, nutrients will pass through the small intestine without being absorbed and malnourishment may occur despite adequate caloric intake.
With celiac disease, eating foods or using products containing gluten causes the immune system to damage cells and destroy the villi lining the small intestine. Strict adherence to a gluten-free diet will reverse the damage associated with celiac disease and allow for normalization of digestion and nutrient absorption.
Celiac disease affects people differently and the symptoms are wide and varied. Experiencing these symptoms does not mean a person has celiac disease, just as some patients with the disease may not show any symptoms.
Symptoms of celiac disease include:
Gas, recurring abdominal bloating and pain
Chronic diarrhea or constipation; pale, foul-smelling or fatty stool
Weight loss/weight gain
Unexplained anemia (a low count of red blood cells causing fatigue)
Behavioral changes; irritability is common in children
Tingling numbness in the legs (from nerve damage)
Bone or joint pain
Delayed growth in children or failure to thrive in infants
Pale sores inside the mouth, called aphthous ulcers
Itchy skin rash called dermatitis herpetiformis
Diagnosing Celiac Disease
The symptoms of celiac disease often mimic other diseases, such as irritable bowel syndrome and Crohn’s disease. A blood test is often the first test your doctor will order. This test checks for high levels of autoantibodies associated with celiac disease. If the blood test comes back positive, an upper endoscopy is often recommended to obtain a sample of the tissue (biopsy) from your small intestine to test the damage to the villi. An upper endoscopy involves passing a long, thin, flexible tube with a tiny video camera and light on the end through the mouth and into the small intestine. Tiny instruments are passed through an opening in the endoscope to obtain tissue samples for the biopsy. Before you undergo any test to determine whether you have celiac disease, it is important that you continue a diet consisting of gluten-containing food so the results are accurate.
The primary treatment for celiac disease is the strict following of a gluten-free diet. A life-long gluten-free diet will help protect your small intestine.
In many patients with celiac disease, even a small amount of gluten is enough to cause intestinal damage, even though you may not be experiencing symptoms.
While you may be tempted to cheat, and may not notice much of a problem when you do, it is important to remember that you may run the risk of long-term problems.
While you will never be completely cured of celiac disease, after adopting a gluten-free diet your small intestine should heal in about two years for adults and within a few months in children and young adults.
Being healed from celiac disease means that your small intestine returns to normal function and can begin absorbing nutrients properly; however, it does not mean that you can stop eating gluten-free products. Some patients with celiac disease may experience symptoms if the same cookware is used to cook their food and food containing gluten.
Complications of Celiac Disease
Due to damage of the small intestine and nutrient absorption problems, people with celiac disease are at increased risk of developing malnutrition, anemia and other diseases and health problems.
After years of being undiagnosed, some adults may experience “refractory” celiac disease, which means that the body does not respond to a gluten-free diet and that symptoms continue and can lead to intestinal damage.
Patients with celiac disease may develop osteoporosis (weak and brittle bones) or short stature in children. This is due to lack of nutritional absorption.
Patients may experience an increased risk of lymphoma and intestinal cancers.
Some patients with celiac disease may have other autoimmune disorders including type 1 diabetes, thyroid disease, rheumatoid arthritis and liver disease, among others.
A Gluten-Free Diet
Grains, including wheat products, are a major source of nutrients in the basic American diet. The U.S. Department of Agriculture recommends individuals eat between 3 and 8 ounces of grains a day depending on age and activity level. For instance, this is one slice of bread, 1 cup of ready-to-eat cereal, or a half a cup of cooked rice, cooked pasta or cooked cereal.
Once you are diagnosed with celiac disease, you should consult with a nutritionist who will work with you to help develop a diet program that will be free of gluten-containing products, but still ensure you are receiving the correct balance of nutrients. You will need to learn how to read nutrition labels to ensure that the products do not contain gluten or other ingredients that may affect you. While the introduction of a gluten-free diet can seem overwhelming, especially for a child, there are many foods that can be substituted for traditional wheat-based foods.
Some foods you will be allowed to eat include:
Foods to avoid include:
Wheat, including durum, graham, spelt, kamut, semolina.
Wheat starch, wheat bran, wheat germ, cracked wheat, hydrolyzed wheat protein.
Triticale (a cross between wheat and rye).
Many products thought to be gluten-free are often contaminated with gluten, such as oat products. For this reason oats are not allowed in the initial diets of those with celiac disease.
There are many processed food products that are made using wheat, barley and rye. While many of these products are available gluten-free, read the nutrition label or contact the manufacturer to learn more.
Cold cuts, hot dogs, salami, sausage
Seasoned tortilla chips
Adapted from Thompson T. Celiac Disease Nutrition Guide, 2nd ed. Chicago: American Dietetic Association; 2006. © American Dietetic Association; and Quick Start Guide for Celiac Disease, Celiac Disease Foundation and the Gluten Intolerance Group. For a complete copy of the Celiac Disease Nutrition Guide, please visit www.eatright.org.