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Compiled and edited by Lahle Wolfe from NIH Publication No. 06–4269; October 2005

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  (Iron Overload)
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Did You Know?

... that it is estimated that 1 in every 150 persons in the United States has celiac disease?

Celiac disease may be one of the most common genetically based disorders,” says Alessio Fasano, M.D., co-director of the University of Maryland Center for Celiac Research. “If you add together all of the people with Crohn’s disease, ulcerative colitis, and cystic fibrosis, you would only have half of the number of people with celiac disease...

Diseases Linked to Celiac Disease

People with celiac disease tend to have other autoimmune diseases. The connection between celiac disease and these diseases may be genetic. These diseases include

  • thyroid disease
  • systemic lupus erythematosus
  • type 1 diabetes
  • liver disease
  • collagen vascular disease
  • rheumatoid arthritis
  • Sjögren's syndrome

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Celiac Sprue - Part 1 of 3
(also known as Celiac Disease, Gluten Intolerance,
Gluten-Sensitive Enteropathy, Nontropical Sprue, or Sprue)
Symptoms, Diagnosis, Treatment
join a Celiac Support Group

Mini Site Index
What is Celiac Disease?
Treatment:  Gluten-Free Diet Necessary
Prevalence of Sprue
Symptoms of Celiac Disease
Why are Celiac Symptoms so Varied?
Diagnosing Celiac

Part 2
The Gluten-Free Diet
Complications of Celiac Disease

Part 3
The Gluten-Free Diet - Examples of Foods Permitted & Prohibited


What is Celiac Disease?

Celiac disease is an incurable autoimmune intestinal disorder that has a genetic component to acquiring it.  Unfortunately, celiac is often  associated with type 1 diabetes and anyone diagnosed with type 1 should be tested for celiac disease.  A simple blood test can help determine if celiac antibodies are present, however, a blood test can come back negative and a person can still have celiac disease. Sometimes, a biopsy of the intestine is performed to diagnose celiac sprue if lab work is inconclusive.

The troubling symptoms of celiac include diarrhea, constipation, bloating, gas, irritable bowel syndrome, weight loss, malnutrition and vitamin deficiency, unexplained anemia and fatigue, abdominal pain, and early onset of osteoporosis. 


Prevalence of Celiac

Studies from the University of Maryland Center for Celiac Research indicate that the disease affects 1 out of every 150 Americans. That is up from original estimates of one out of every 7,000 Americans with the disorder. The NIH reports an even higher number (2 million persons in the US are believed to have celiac disease or, 1 in every 133 people).  Celiac is more common to those with Northern European descent, however, it can also affect African American, Asian, and Hispanic individuals as well.  Among people who have a first-degree relative diagnosed with celiac disease, as many as 1 in 22 people may have the disease.

Celiac disease could be under diagnosed in the United States for a number of reasons including:

  • Celiac symptoms can be attributed to other problems.
  • Many doctors are not knowledgeable about the disease.
  • Only a small number of U.S. laboratories are experienced and skilled in testing for celiac disease.

More research is needed to learn the true prevalence of celiac disease among Americans.


Symptoms of Celiac Disease

Celiac disease affects people differently. Symptoms may occur in the digestive system, or in other parts of the body. For example, one person might have diarrhea and abdominal pain, while another person may be irritable or depressed. In fact, irritability is one of the most common symptoms in children.

Symptoms of celiac disease may include one or more of the following:

  • gas
  • recurring abdominal bloating and pain
  • chronic diarrhea
  • pale, foul-smelling, or fatty stool
  • weight loss / weight gain
  • fatigue
  • unexplained anemia (a low count of red blood cells causing fatigue)
  • bone or joint pain
  • osteoporosis, osteopenia
  • behavioral changes
  • tingling numbness in the legs (from nerve damage)
  • muscle cramps
  • seizures
  • missed menstrual periods (often because of excessive weight loss)
  • infertility, recurrent miscarriage
  • d elayed growth, failure to thrive in infants
  • pale sores inside the mouth, called aphthous ulcers
  • tooth discoloration or loss of enamel
  • itchy skin rash called dermatitis herpetiformis

A person with celiac disease may have no symptoms. People without symptoms are still at risk for the complications of celiac disease, including malnutrition. The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications. Anemia, delayed growth, and weight loss are signs of malnutrition: The body is just not getting enough nutrients. Malnutrition is a serious problem for children because they need adequate nutrition to develop properly. (See Complications of Celiac.)


Why are celiac symptoms so varied?

Researchers are studying the reasons celiac disease affects people differently. Some people develop symptoms as children, others as adults. Some people with celiac disease may not have symptoms, while others may not know their symptoms are from celiac disease. The undamaged part of their small intestine may not be able to absorb enough nutrients to prevent symptoms.

The length of time a person is breastfed, the age a person started eating gluten-containing foods, and the amount of gluten containing foods one eats are three factors thought to play a role in when and how celiac appears. Some studies have shown, for example, that the longer a person was breastfed, the later the symptoms of celiac disease appear and the more uncommon the symptoms.  

Diagnosing celiac

Recognizing celiac disease can be difficult because some of its symptoms are similar to those of other diseases. In fact, sometimes celiac disease is confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, Crohn's disease, diverticulitis, intestinal infections, and chronic fatigue syndrome. As a result, celiac disease is commonly under diagnosed or misdiagnosed.

Recently, researchers discovered that people with celiac disease have higher than normal levels of certain autoantibodies in their blood. Antibodies are protective proteins produced by the immune system in response to substances that the body perceives to be threatening. Autoantibodies are proteins that react against the body's own molecules or tissues. To diagnose celiac disease, physicians will usually test blood to measure levels of

  • Immunoglobulin A (IgA)
  • anti-tissue transglutaminase (tTGA)
  • IgA anti-endomysium antibodies (AEA)
  • Before being tested, one should continue to eat a regular diet that includes foods with gluten, such as breads and pastas. If a person stops eating foods with gluten before being tested, the results may be negative for celiac disease even if celiac disease is actually present.

    If the tests and symptoms suggest celiac disease, the doctor will perform a small bowel biopsy. During the biopsy, the doctor removes a tiny piece of tissue from the small intestine to check for damage to the villi. To obtain the tissue sample, the doctor eases a long, thin tube called an endoscope through the mouth and stomach into the small intestine. Using instruments passed through the endoscope, the doctor then takes the sample.



    Screening for celiac disease involves testing for the presence of antibodies in the blood in people without symptoms. Americans are not routinely screened for celiac disease. Testing for celiac-related antibodies in children less than 5 years old may not be reliable. However, since celiac disease is hereditary, family members, particularly first-degree relatives-meaning parents, siblings, or children of people who have been diagnosed-may wish to be tested for the disease. About 5 to 15 percent of an affected person's first-degree relatives will also have the disease. About 3 to 8 percent of people with type 1 diabetes will have biopsy-confirmed celiac disease and 5 to 10 percent of people with Down syndrome will be diagnosed with celiac disease.


    Treatment:  Gluten-Free Diet Necessary

    Gluten is a protein found in all forms of wheat and related rye grains.  Persons with celiac must completely eliminate wheat and rye grains and barley from their diets, including:  durum, semolina, spelt, kamut, einkorn, faro,rye, barley, triticale.  Traditionally, oats have also been considered toxic to those with Celiac.  New research may suggest otherwise but it is best to consult with your doctor about what is safe for you.

    When a person with celiac eats gluten there is an immunologically toxic reaction to the gluten ingested.  This causes many problems (and symptoms)including damage to the mucosal surface of the small intestine.  The villi in the intestines become shorter and flatter when offending foods are eaten and the condition and symptoms worsen.  It is imperative that persons with Celiac receive good medical care and stick to their gluten-free diet faithfully. 

    A diet for celiac may prohibit:

    • Foods with wheat:  pizza, bread, pasta, cereal, ice cream, soup, and beer.
    • Everyday products such as medicines, vitamins, makeup, toothpaste, or licking postage stamps and envelopes.
    • People who suffer from the genetic disorder celiac disease face these challenges everyday. The only treatment is to avoid eating foods that contain the protein gluten, which is found in wheat and other grains. Celiac disease can cause severe intestinal problems and lead to serious complications such as diabetes, osteoporosis, and cancer.

    For most people, following this diet will stop symptoms, heal existing intestinal damage, and prevent further damage. Improvements begin within days of starting the diet. The small intestine is usually completely healed in 3 to 6 months in children and younger adults and within 2 years for older adults. "Healed" means a person now has villi that can absorb nutrients from food into the bloodstream.

    In order to stay well, people with celiac disease must avoid gluten for the rest of their lives. Eating any gluten, no matter how small an amount, can damage the small intestine. The damage will occur in anyone with the disease, including people without noticeable symptoms. Depending on a person's age at diagnosis, some problems will not improve, such as delayed growth and tooth discoloration.

    Some people with celiac disease show no improvement on the gluten-free diet. The condition is called unresponsive celiac disease. The most common reason for poor response is that small amounts of gluten are still present in the diet. Advice from a dietitian who is skilled in educating patients about the gluten-free diet is essential to achieve best results.

    Rarely, the intestinal injury will continue despite a strictly gluten-free diet. People in this situation have severely damaged intestines that cannot heal. Because their intestines are not absorbing enough nutrients, they may need to directly receive nutrients into their bloodstream through a vein (intravenously). People with this condition may need to be evaluated for complications of the disease. Researchers are now evaluating drug treatments for unresponsive celiac disease.

    On to Next Section on Celiac Disease

    Article Sources

    Reprint, edited for content, of NIH Publication No. 06–4269, October 2005
    University of Maryland Medical Center
    National Institutes of Health
    Center for Disease Control


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