Atlanta Metro Celiacs
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Celiac Basics

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What is Celiac Disease ? Who has it? What are the symptoms? Diagnosing Celiac Disease
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. Medical Tests How do I deal with it?
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What is Celiac Disease?

Celiac disease is a digestive 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, found in wheat, rye, and barley. Gluten is found mainly in foods, but is also found in products we use every day, such as medicines, and vitamins.

When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging the small intestine. The tiny, fingerlike protrusions lining the small intestine are damaged or destroyed. Called villi, they normally allow nutrients from food to be absorbed into the bloodstream. Without healthy villi, a person becomes malnourished, regardless of the quantity of food eaten.

Because the body's own immune system causes the damage, celiac disease is considered an autoimmune disorder. However, it is also classified as a disease of malabsorption because nutrients are not absorbed. Celiac disease is also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy.

Celiac disease is a genetic disease, meaning it runs in families. Sometimes the disease is triggered-or becomes active for the first time-after surgery, pregnancy, childbirth, viral infection, or severe emotional stress.

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Who has it?

One out of 133 people in the United States is affected with celiac disease. CD occurs in 5-15% of the offspring and siblings of a person with celiac disease. In 70% of identical twin pairs, both twins have the disease. It is strongly suggested that family members be tested, even if asymptomatic. Family members who have an autoimmune disease are at a 25% increased risk of having celiac disease.

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What are the symptoms?

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
  • delayed 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.

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    Diagnosing celiac diease

    Diagnosing celiac can be done by medical test or by eliminating gluten from your diet and observing the results. A diagnosis by medical test is the preferred method. For accurate results it is important to continue to eating gluten until the medical tests are completely performed.

    Why is it important to have the medical tests?

  • For some, a medical test helps them stick to the diet
  • If in the future, medicine becomes available to minimize or eliminate the symptoms, the insurance company may require a medical diagnose before covering the cost of the drug(s)
  • It may be necessary to get a school, etc to provide appropriate accomodations for a gluten free diet
  • If you are being tested because a relative is a celiac, you might not have externally observable symptoms

  • Why you might self diagnose by diet?

  • There is the potential for a false negative result from the medical tests
  • For those without health insurance, the cost of the tests might be a detriment.
  • You eliminated gluten from your diet before you realized the need to continue eating gluten to obtain accurate test results

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    Medical Tests

    The medical tests are done in two steps. The first is blood work. The blood work is done to meassure the level of certain autoantibodies in the blood. If the blood work returns a positive result, an endoscopy is performed (see below for details.). A diagnosis by medical test is the preferred method. For accurate results it is important to continue to eating gluten until the medical tests are completely performed.

    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. An endoscopy is not a painful procedure.
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    How do I deal with it
    The quick answer is the one that doesn't really give you a useable answer. That answer is avoid all foods that contain the gluten contained in wheat, barley & rye. (Avoid oats also, because almost all oats are cross-contaminated with wheat). The challenge for beginning celaics is to learn to figure out which foods are gluten free (GF) and which are not.
      There are several approaches people with celiac disease use to find gluten-free foods, including:
    • Select whole unprocessed foods.
    • Purchase specialty products produced by gluten-free venders from the health food store and by mail.
    • Use products that have no questionable ingredients on the product label; OR contact manufacturers by phone, mail or e-mail to determine if questionable ingredient is gluten-free.
    • Use product guides produced by national celiac support groups as an aid in selecting gluten-free products.


    See the Gluten Free Shopping page on this website for help on finding Gf foods.

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    Celiac 101 Video


    There is a 90 minute video posted on youtube about celiac disease. It is a good presentation for Celiac 101 . It is a video of talks by 3 doctors from the celiac center at the University Of California San Diego.

    http://youtube.com/watch?v=QR2LvQmoF1Y

    The individual talks are:
    Dr. Kagnoff's lecture is first, with how CD affects the body
    Dr. Harmon's talk begins at 21 minutes, discussing diagnosis and testing
    Dr. Algert, a nutritionist, begins at about 39 minutes.
    A question and answer section begins at 59 minutes

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