Disease Basics

Introduction
While you may initially be relieved to receive a diagnosis for the unexplained symptoms you may have been experiencing, you may also be scared by hearing you have celiac disease. It is important to know that by working with your gastroenterologist, you can develop an eating plan that can help control your symptoms and may reverse the damage of your disease, allowing you and your loved ones to live healthy lives.
Celiac disease occurs in the digestive system when people cannot tolerate a protein called gluten. Gluten is found primarily in wheat, barley and rye, but may also be in products you 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, recent research has shown that as many as 2 million people in the U.S. may have celiac disease. It is very common among first-degree relatives, who include siblings, parents and children, meaning it is a genetic disease. Celiac disease can be diagnosed in both children and adults and people may live for years without knowing they have it. 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:

Biology of Celiac Disease
Celiac disease causes your immune system to damage 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 you will become malnourished, regardless of how much food you eat.
Celiac disease is a permanent disease. It is classified as both an autoimmune disorder, because the body is damaged by its own immune system, and a disease of malabsorption, since your body cannot absorb the nutrients it needs to function properly.
With celiac disease, when you eat foods or use products containing gluten, your immune system responds by damaging cells and destroying the villi lining the small intestine. However, if you change your habits and adopt a gluten-free lifestyle, you can reverse the damage associated with celiac disease.

Symptoms
Celiac disease affects people differently and the symptoms are wide and varied. Experiencing these symptoms does not mean you have celiac disease, just as some patients with the disease may not show any symptoms. However, if you have one or more of these symptoms and a relative with celiac disease, you may want to talk to your gastroenterologist about getting tested.

Diagnosing Celiac Disease
Since the symptoms of celiac disease often mimic other diseases, such as irritable bowel syndrome, Crohn’s disease and diverticulitis, it is often difficult to recognize whether you may have the disease. In discussing your symptoms with your gastroenterologist, he or she may order a blood test to determine whether you have high levels of autoantibodies, which are antibodies that react to your own body’s tissues.
If the blood test comes back positive, your gastroenterologist may perform an endoscopy to obtain a sample of the tissue (biopsy) from your small intestine to test the damage to the villi. An endoscopy is performed by your gastroenterologist using a long, thin, flexible tube with a tiny video camera and light on the end. The gastroenterologist can safely guide the instrument to carefully examine the inside lining of the small intestine. Tiny instruments are passed through an opening in the endoscope to obtain tissue samples for the biopsy. To learn more about endoscopy, read the AGA Institute brochure on that topic in your gastroenterologist’s office or visit www.gastro.org/patient.
Before you undergo any test to determine whether you have celiac disease, it is important that you continue your normal diet so the results are accurate.

Treatment
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.
Good news: Improvements in symptoms should begin within days of changing your diet.
While you will never be completely cured of celiac disease, after adopting a gluten-free diet your small intestine should heal in two years for adults and within a few months in children and young adults.
Your gastroenterologist may want to take an intestinal tissue biopsy about six months after diagnosis to confirm your new diet is helping to improve the intestinal tissues.
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

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, your gastro-enterologist 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:

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.

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.