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Celiac Disease FAQs

What is celiac disease?
What is gluten?
What are the symptoms of celiac disease?
How do doctors diagnose celiac disease?
What treatments are available for celiac disease?
What potential treatments are being developed for celiac disease?
Which foods have gluten in them (foods to AVOID)?
Which foods don’t have gluten in them?
Can babies and children have celiac disease?

What is celiac disease?

Celiac disease is a chronic autoimmune/inflammatory disease caused by a common genetic disorder; approximately 1%-2% of the people in the United States (and most other countries) have celiac disease.  A much larger percentage of the population carries genes that make them at risk for developing celiac disease.  Glutens are found in grains such as wheat, barley and rye.  When people with celiac disease ingest gluten, specialized cells in their intestines called antigen presenting cells (APCs) bind to larger gluten fragments.  Binding of the APCs causes T-cell activation and a subsequent cascade of systemic autoimmune response, inflammation, damage to various organs and tissues throughout the body, and damage to the lining of the small intestine, which can result in inadequate absorption of nutrients and a wide range of clinical symptoms and sequellae.

What is gluten?

“Gluten” is a general term that is used to describe a family of proteins found in various grains such as wheat, rye, and barley.  Gluten may lurk in many foods where it is not properly labeled.  Gluten proteins are not fully digested by humans.  Genetically susceptible individuals can mount an immune inflammatory response to these undigested proteins, which leads to the symptoms and consequences of celiac disease. 

What are the symptoms of celiac disease?

The symptoms of celiac disease overlap with those of other digestive disorders.  Celiac disease may result in a different constellation of presenting symptoms in different people.  While some may have overwhelming gastrointestinal symptoms, others may have consequences of osteoporosis or anemia as their chief complaint. 

If you are experiencing one or more of the symptoms listed here, it does not necessarily mean you have celiac disease, but you should talk to your doctor about getting tested for the disease.  In addition, if you have a blood relative with celiac disease (called an index case), you may wish to talk to your doctor about getting tested.

  • Digestive symptoms
                           
    • stomach pain, bloating and/or gas
    • diarrhea and/or constipation
    • pale, foul-smelling, or fatty stool
  • Symptoms of the skin/teeth

    • a very itchy skin rash with blisters
    • pale sores inside the mouth, called aphthous ulcers
    • hair loss
    • tooth discoloration or loss of enamel
  • General symptoms
    • weight loss/weight gain
    • elevated liver enzyme levels
    • fatigue                      
    • anemia
    • behavior changes, irritability is one of the most common symptoms in children
    • slowed growth in children/failure to thrive in infants
    • bone or joint pain
    • osteoporosis or osteopenia
    • missed menstrual periods, infertility, recurrent miscarriage
    • tingling, numbness in the legs (from nerve damage)
    • muscle cramps
    • migraine headaches                      
    • related condition: type 1 diabetes

    How do doctors diagnose celiac disease?

    There are several sensitive and specific blood tests that are useful in screening for the diagnosis of celiac disease.  These tests detect autoantibodies that are present in higher than normal levels in the blood of patients who have celiac disease.  Autoantibodies are proteins produced by the immune system that, instead of reacting against foreign substances, react against components of the body itself.

    The first tests doctors usually perform to screen for the diagnosis of celiac disease are blood tests for:

    • Anti-tissue transglutaminase antibodies (tTGA) with or without total IgA level
    • IgA Anti-endomysial antibodies (EMA)


    It is very important that a patient eats a diet containing gluten prior to having blood tests for celiac disease autoantibodies; otherwise the tests may fail to detect celiac disease.

    If blood tests suggest a patient has celiac disease, the physician will usually perform a small bowel biopsy to confirm the diagnosis.  In this test, very small tissue samples are taken from the small intestine using a long, thin tube passed through the mouth and stomach and into the small intestine (an endoscope).  From these tissue samples, the physician can confirm the diagnosis of celiac disease and, if the disease is present, determine how much damage the lining of the intestine has sustained.

    What treatments are available for celiac disease?

    Currently, there are no drugs, vaccines, or surgical treatments available for celiac disease.  The only available option is for patients to follow a strict, gluten-free diet.  Total exclusion of dietary gluten is very difficult because gluten is one of the most common food ingredients.  Even highly motivated patients who attempt to adhere to the diet are affected due to inadvertent or background exposure to gluten.

    What potential treatments are being developed for celiac disease?

    Currently, several classes of potential therapies are being investigated for potential use in celiac disease.  Proposed mechanisms of action include altering intestinal mucosal permeability, gluten-specific vaccines, proteases targeting gluten, tTG inhibitors (tissue transglutaminase inhibitors), and various immune-modulatory therapies. 

    Which foods have gluten in them (foods to AVOID)?

    Foods that are made from wheat, barley, and rye contain gluten and should be avoided by patients with celiac disease.  These include most breads, cookies/baked goods, pastas, and cereals.  Gluten is also “hidden” in many processed foods that include one or more of these grains as minor ingredients, such as sauces, cooking ingredients, artificial and natural flavorings, salad dressings, soy sauce, rice cereal, french fries, processed meats, etc.  It is very important for patients with celiac disease to read the ingredient labels on all food items to make sure the item does not include any gluten-containing ingredients.  However, many food items contain gluten that is not labeled.  Certain cosmetics and medications also contain gluten; discuss these types of products with your pharmacist to make sure the ones you are using are gluten-free.  Patients with celiac disease also need to be aware that gluten can be present in foods that are, themselves, gluten-free as a result of cross-contamination or contact with gluten-containing foods during preparation, cooking, or storage.
    The American Dietetic Association has published its recommendations for a gluten-free diet in the following book that can be ordered on the American Dietetic Association website (http://www.eatright.org):  Thompson T. Celiac Disease Nutrition Guide, 2nd ed. Chicago: American Dietetic Association; 2006. © American Dietetic Association.  It is a good idea for people with celiac disease to discuss gluten-free food choices with a dietitian or physician who specializes in celiac disease.

    Which foods don’t have gluten in them?

    Generally, the following foods are gluten-free:  breads or baked goods prepared from corn, potato, rice, or soy flours or from cornmeal; cereals prepared from soy, corn (hominy), rice, cornmeal, or quinoa; pasta prepared from rice or other allowed ingredients; all raw/unprocessed meats, chicken, and fish; milk and unprocessed cheese; dried beans, nuts, and peanut butter; corn and rice; unprocessed fruits and vegetables.  Patients with celiac disease always need to be aware of the possibility of cross-contamination of gluten-free foods with gluten during food storage, preparation and/or cooking.

    Can babies and children have celiac disease?

    Yes, celiac disease symptoms may start in childhood or adulthood.  About half the cases of celiac disease are thought to have onset in childhood.


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