What is celiac disease?
Celiac disease (also known as celiac sprue or gluten-sensitive enteropathy) is a digestive and multisystem disorder. Multisystem means that it may affect several organs. Celiac disease is a complex immune-mediated disorder, one in which the immune system causes damage to the small bowel when affected people eat gluten (a protein in some grains such as wheat, barley, and rye).
What is the difference between celiac disease and non-celiac gluten sensitivity (NCGS)?
Celiac disease causes damage to the small intestine. There are specific markers in the blood that help confirm the diagnosis. Non-celiac gluten sensitivity causes symptoms that may include nausea, vomiting, abdominal pain, headaches, diarrhea, joint pain, fatigue, and “brain fog." These might be slight or severe. However, NCGS does not injure the intestine; there are no specific markers in the blood; and the diagnosis requires improvement of symptoms after following a diet without gluten.
Symptoms and Causes
What are the causes of celiac disease?
Normally, the body's immune system is designed to protect it from foreign invaders. When people with celiac disease eat foods that contain gluten, their immune systems attack the lining of the intestine. This causes inflammation (swelling) in the intestines and damages the villi, the hair-like structures on the lining of the small intestine. Nutrients from food are absorbed by the villi. If the villi are damaged, the person cannot absorb nutrients and ends up malnourished, no matter how much he or she eats.
What are the symptoms of celiac disease?
Symptoms of celiac disease vary among sufferers and include:
- No symptoms at all (like some family members of celiac patients).
- Digestive problems (abdominal bloating, pain, gas, constipation, diarrhea, pale stools and weight loss).
- A severe blistering skin rash called dermatitis herpetiformis and sores in the mouth (called aphthous ulcers).
- Unexplained anemia (low blood count) or hepatitis (inflammation of the liver).
- Musculoskeletal problems (muscle cramps, joint and bone pain) and defects in dental enamel.
- Growth problems and failure to thrive (in children). This is because they cannot absorb the nutrients.
- Tingling sensation in the legs (caused by nerve damage and low calcium).
What other health problems can accompany celiac disease?
Celiac disease can leave the patient vulnerable to other health problems, including:
- Osteoporosis, a disease that weakens bones and leads to fractures. This occurs because the person has trouble absorbing enough calcium and vitamin D.
- Cancer of the intestine (very rare).
People who have celiac disease may have other autoimmune diseases, including:
- Thyroid disease or liver disease.
- Type 1 diabetes.
- Rheumatoid arthritis.
- Sjogren's syndrome (a disorder that causes insufficient moisture production by the glands).
- Autoimmune liver disorders.
Some people have “non-classic celiac disease,” such as when the only symptom is anemia. Non-classic celiac disease is becoming the most common form of celiac disease. Others might have “asymptomatic celiac disease,” which is one without any symptoms at all.
Diagnosis and Tests
How is celiac disease diagnosed?
If your healthcare provider thinks you might have celiac disease, they will perform a careful physical examination and discuss your medical history with you. The provider may also perform a blood test to measure levels of antibodies to gluten. People with celiac disease have higher levels of certain antibodies in their blood. Sometimes having a genetic test for celiac disease in the blood may be necessary.
Your provider may perform other tests to look for nutritional shortages, such as a blood test to detect iron levels. A low level of iron (which can cause anemia) can occur with celiac disease.
Your provider may take a biopsy from your small intestine to check for damage to the villi. In a biopsy, the doctor inserts an endoscope (a thin, hollow tube) through your mouth and into the small intestine and takes a sample of the small intestine with an instrument. This is done with sedation or anesthesia to avoid any discomfort during the procedure.
Management and Treatment
How is celiac disease treated?
If you have celiac disease, you can't eat any foods that contain gluten (including wheat, rye and barley). You will be encouraged to visit with a dietitian for formal diet instruction. Dropping gluten from your diet usually improves the condition within a few days and eventually ends the symptoms of the disease. However, the villi usually require months to years to complete healing. It might take two to three years for the intestines to heal in an adult, compared to about six months for a child.
You'll need regular medical follow-up visits (usually at 3 months, 6 months, and then every year) and have to remain on this diet for the rest of your life. Eating even a small amount of gluten can damage your intestine and restart the problem.
Following a gluten-free diet means you cannot eat many "staples," including pasta, cereals and many processed foods that contain gluten. There may also be gluten in ingredients added to food to improve texture or flavor and in some medicines. Some less obvious sources of gluten may include ice cream and salad dressing. Cross-contamination is another common source of gluten which happens when gluten-free foods come accidentally into contact with gluten.
If you have celiac disease, you can still eat a well-balanced diet. For instance, bread and pasta made from other types of flour (potato, rice, corn, or soy) are available. Food companies and some grocery stores also carry gluten-free bread and products.
You can also eat fresh foods that have not been artificially processed, such as fruits, vegetables, meats and fish, since these do not contain gluten.
How can I prevent celiac disease?
Celiac disease cannot be prevented. However, early detection and management of celiac disease may prevent severe complications. Therefore, it is very important to check for celiac disease in persons at higher risk for having the condition, such as first-degree family members of patients with celiac disease.
Outlook / Prognosis
What is the outlook for people with celiac disease?
The outlook for people with celiac disease varies. After adequate treatment and regular medical follow-up, the prognosis is excellent. People who are not treated or who do not respond to treatment may suffer some complications of the disease or even die earlier than what is generally considered normal. However, celiac disease is rarely fatal—most people who are diagnosed and who do not eat gluten do well.
What are the practical aspects of living with celiac disease?
A gluten-free diet will be a big change in your life (a good and necessary change if you have celiac disease). You have to rethink your eating habits, including what you buy for lunch, what you eat at parties, or what you snack on. When you go grocery shopping, be sure to read the ingredient labels carefully to avoid accidental gluten ingestion. If after reading labels you are not sure about gluten content, it is not safe for you.
A dietitian, a healthcare professional who specializes in food and nutrition, can help you with the gluten-free diet. There are also support groups that can help patients who have just been diagnosed with celiac disease.
Are there resources for people with celiac disease?
You might find information you can use from these organizations.
- Celiac Disease Foundation.
- Beyond Celiac.
- National Celiac Association.
- Society for the Study of Celiac Disease.
- American Celiac Society Dietary Support Coalition.