National Foundation for Celiac Awareness

What is Celiac Disease?
Symptoms
Diagnosis
Treatment
Related Diseases
Gluten in Medication
Celiac Survival Guide
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How Common Is Celiac Disease?

What is Celiac Disease?

Celiac Disease is an autoimmune disease that damages the small intestine and interferes with absorption of nutrients from food.  People who have Celiac Disease cannot tolerate a protein called gluten that is found in wheat, rye, and barley.  Research has shown that timely diagnosis of Celiac Disease is essential to treating or preventing its complications

10 Facts about Celiac Disease                                                             

1. Celiac disease is common: affecting an average of 1/133 Americans and up to 1/22 for those associated with risk factors. 

2. The average duration of symptoms for celiac patients before they are correctly diagnosed is 9 years.

3. Celiac disease is twice as common as Crohn’s, ulcerative colitis and cystic fibrosis combined.

4. Approximately 50% of adult patients present with atypical symptoms. 

5. Celiac disease is often misdiagnosed as irritable bowel syndrome or lactose intolerance and up to 1/3rd of celiac disease patients have been previously diagnosed with IBS. 

6. Celiac disease meets the criteria for the World Health Organization for justifying general screening. 

7. Physicians may use more widely known but less accurate serological testing that can result in missed diagnosis.  

8. Up to 21% of intestinal biopsies, necessary for confirmation of celiac disease, are rejected by insurance companies, claiming that the cost of the testing isn’t justified by the symptoms. 

9. Celiac disease has a 95 percent genetic predisposition.

10. Celiac disease is associated with or can lead to a number of other disorders including infertility, premature births, reduced bone density (both osteopenia and osteoporosis), neurological disorders, malignancies such as adenocarcinoma, non-Hodgkins lymphoma, and others, and a host of autoimmune disorders such as insulin dependent diabetes, thyroid disease, Sjogren’s syndrome, Addison’s disease, Psoriasis, autoimmune liver disease, and cardiomyopathy.

Could You Have Celiac Disease? 

Symptoms                                                           
Celiac disease affects people differently.  Some people develop symptoms as children, others as adults.  One factor thought to play a role in when and how celiac appears is whether and how long a person was breastfed--the longer one was breastfed, the later symptoms of celiac disease appear and the more atypical the symptoms.  Other factors include the age at which one began eating foods containing gluten and how much gluten is eaten. 

Symptoms may or may not occur in the digestive system.  For example, one person might have diarrhea and abdominal pain, while another person has irritability or depression.  In fact, irritability is one of the most common symptoms in children. 

Symptoms of celiac disease may include one or more of the following: recurring abdominal bloating and pain, chronic diarrhea, weight loss, pale, foul-smelling stool, unexplained anemia (low count of red blood cells), gas, bone pain, behavior changes, muscle cramps, fatigue, delayed growth, failure to thrive in infants, pain in the joints, seizures, tingling numbness in the legs (from nerve damage), pale sores inside the mouth, called aphthus ulcers, painful skin rash, called dermatitis herpetiformis, tooth discoloration or loss of enamel, missed menstrual periods (often because of excessive weight loss).

Anemia, delayed growth, and weight loss are signs of malnutrition--not getting enough nutrients.  Malnutrition is a serious problem for anyone, but particularly for children because they need adequate nutrition to develop properly.

Some people with celiac disease may not have symptoms.  The undamaged part of their small intestine is able to absorb enough nutrients to prevent symptoms.  However, people without symptoms are still at risk for the complications of celiac disease.

How Is Celiac Disease Diagnosed?  

Diagnosing celiac disease can be difficult because some of its symptoms are similar to those of other diseases, including irritable bowel syndrome, Crohn's disease, ulcerative colitis, diverticulosis, intestinal infections, chronic fatigue syndrome, and depression.

Recently, researchers discovered that people with celiac disease have higher than normal levels of certain antibodies in their blood.  Antibodies are produced by the immune system in response to substances that the body perceives to be threatening.  To diagnose celiac disease, physicians test blood to measure levels of antibodies to endomysium and tissue transglutaminase.

If the tests and symptoms suggest celiac disease, the physician may remove a tiny piece of tissue from the small intestine to check for damage to the villi. This is done in a procedure called a biopsy: the physician eases a long, thin tube called an endoscope through the mouth and stomach into the small intestine, and then takes a sample of tissue using instruments passed through the endoscope.  Biopsy of the small intestine is the best way to diagnose celiac disease.

Screening for celiac disease involves testing asymptomatic people for the antibodies (see above).  Americans are not routinely screened for celiac disease.  However, because celiac disease is hereditary, family members--particularly first-degree relatives--of people who have been diagnosed may need to be tested for the disease.  About 10 percent of an affected person's first-degree relatives (parents, siblings, or children) will also have the disease.  The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications.

What Is The Treatment?   

The only treatment for celiac disease is to follow a gluten-free diet--that is, to avoid all foods that contain gluten.  For most people, following this diet will stop symptoms, heal existing intestinal damage, and prevent further damage.  The gluten-free diet is a lifetime requirement.  Eating any gluten, no matter how small an amount, can damage the intestine.  This is true for anyone with the disease, including people who do not have noticeable symptoms.

A gluten-free diet means avoiding all foods that contain wheat (including spelt, triticale, and kamut), rye, and barley--in other words, most grain, pasta, cereal, and many processed foods.  Despite these restrictions, people with celiac disease can eat a well-balanced diet with a variety of foods, including bread and pasta.  For example, instead of wheat flour, people can use potato, rice, soy, or bean flour.  Or, they can buy gluten-free bread, pasta, and other products from special food companies. 

Plain meat, fish, rice, fruits, and vegetables do not contain gluten, so people with celiac disease can eat as much of these foods as they like.