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Celiac Disease Program

University of Chicago Celiac Disease Program
5839 South Maryland Avenue, MC 4069
Chicago, Illinois 60637-1470
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Frequently asked questions about Celiac Disease

  1. What is Celiac Disease?
  2. How common is celiac disease?
  3. What exactly is an autoimmune disease?
  4. What are typical symptoms of celiac disease?
  5. What symptoms do children exhibit?
  6. Are there any other symptoms?
  7. Does everybody have symptoms?
  8. Who is most at risk of developing celiac disease?
  9. I've heard that people with celiac disease need to be on a gluten-free diet. If my doctor has a strong suspicion of celiac disease, shouldn't I start a gluten-free diet immediately, before testing?
  10. How is celiac disease detected?

  11. How difficult is the endoscopic biopsy?

  12. How is celiac disease treated?

  13. I've been eating bread all my life. How do I get started on a gluten-free diet?

  14. Will celiac disease make it harder for me to conceive?

  15. How will celiac disease affect my pregnancy?

What is celiac disease?

Celiac disease is a genetic autoimmune disease that affects the small intestine.  When people with celiac disease ingest gluten, a protein that is found in wheat, rye and barley, the person's immune system attacks the small intestine.  The small intestine is normally lined with villi, tiny finger-like projections that absorb nutrients from food and enable them to enter the bloodstream.  Gluten destroys the villi in people with celiac disease so that their bodies are no longer able to absorb nutrients from food.

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How common is celiac disease?

A recent study determined that the prevalence of celiac disease in this country is 1 in 133 people, more common than Crohn’s disease, ulcerative colitis, Parkinson’s disease, multiple sclerosis and cystic fibrosis combined.  In spite of this, celiac disease is still considered by many doctors to be rare, and thus it is often overlooked as a cause of symptoms.  On average, it takes 11 years for an adult to be diagnosed correctly.  A child with celiac disease sees an average of eight pediatricians before receiving a correct diagnosis.

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What exactly is an autoimmune disease?

The purpose of the immune system is to protect the body from infections by warding off bacteria, viruses and microbes.  Sometimes, however, the immune system malfunctions and turns on the body itself, attacking its cells, tissues or organs.  Different autoimmune diseases attack different parts of the body.  Celiac disease attacks the small intestine.

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What are typical symptoms of celiac disease?

There are many different symptoms characteristic of celiac disease, which vary somewhat between adults and children.  For children, it is typical to have gastrointestinal symptoms, such as difficulties with digestion, recurring abdominal bloating and pain, chronic diarrhea or constipation, and pale, foul-smelling stool.  One third of adults and up to 50 percent of children has no symptoms at all.

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What symptoms do children exhibit?

Children primarily exhibit symptoms related to the gastrointestinal system, such as chronic diarrhea, a distended belly and recurring abdominal pain.  They may also experience some other symptoms, including failure to thrive, delayed growth and extreme irritability.

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 Are there any other symptoms?

There are other symptoms of celiac disease as well that are unrelated to the gastrointestinal system.  Some of these that are typical for adults include irritability or depression, unexplained weight loss, anemia, fatigue, joint pain, numbness in the legs, mouth sores, tooth discoloration or loss of enamel, dermatitis herpetiformis (a specific type of skin rash), and infertility.

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Does everybody have symptoms?

No.  It is possible to have the disorder and not exhibit any symptoms at all.  Such people still have a small intestine that is damaged, but the damage may be located in areas that do not lead to symptoms.  These individuals are still at risk for developing complications from celiac disease, and should still be diagnosed and treated.

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Who is most at risk for developing celiac disease?

Celiac disease is most likely to be diagnosed in people who are closely related to someone who has celiac disease, as well as in people who already have an existing autoimmune disorder such as Type 1 diabetes or Hashimoto's thyroiditis. Celiac disease also appears with increased frequency in people with Downs Syndrome or unexplained infertility.  Anyone with these conditions should have a screening test for celiac disease. People with unexplained symptoms such as recurring abdominal bloating and pain, sudden weight loss, iron-deficiency anemia and pain in the joints should also be screened.  In the general population, the incidence of celiac disease is about 1 in 133 people.

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I've heard that people with celiac disease need to be on a gluten-free diet. If my doctor has a strong suspicion of celiac disease, shouldn't I start a gluten-free diet immediately, before testing?

It is extremely important not to go on a gluten-free diet before the diagnosis is confirmed.  If you start a gluten-free diet before having the blood tests or the endoscopic biopsy, your test results will not be accurate.  To receive an accurate, confirmed diagnosis of celiac disease, you must be on a diet that includes gluten until your biopsy procedure is complete and your doctor gives you the news.  An accurate medical diagnosis allows you to be sure of the cause of your health problems.  A confirmation of celiac disease also affects your family, because celiac disease is an inherited genetic condition.  Finally, a confirmed medical diagnosis can give you confidence that neither you nor your doctor are overlooking some other health condition that could be causing symptoms.

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How is celiac disease detected?

People who are at risk for celiac disease but who are not experiencing any symptoms themselves, need to have the tissue transglutaminase (tTG)  test, which is a blood test that screens for celiac disease.  If you have a negative blood test, it should be repeated approximately every two years for anyone at risk for celiac disease, who does not have symptoms.  People who have a risk factor and are also experiencing symptoms should have additional blood tests, to help diagnose the disease.  Besides the tTG, they also need the anti-endomysial antibody (EMA) test and the total serum IGA test.  The tTG and the EMA tests will determine if your body is producing antibodies to gluten.  The total serum IGA test will determine if you are IGA-deficient, which will inform your physician if your blood test results are reliable, and may indicate a need for other blood tests.  Note that the blood tests need to be sent to an experienced lab, including the Mayo Clinic or Prometheus Labs.  Other laboratories may not have the expertise to evaluate the tests properly.

 If your blood tests are negative, you can be very sure that you do not have celiac disease at this time.  If they are positive, however, you need to have one more procedure to confirm a positive diagnosis.  This is the endoscopic biopsy.  A gastroenterologist will perform the biopsy, usually in a clinic setting.  While you are sedated, the doctor will insert a tube with a tiny camera on the end through your mouth, until it reaches your small intestine. The doctor will visually examine the small intestine by means of the camera's video feed, and will then cut five or six tiny samples of tissue from the small intestine with a tiny surgical instrument inserted through the tube.  These tissue samples are examined under a microscope.  The results of the biopsy will confirm the presence of celiac disease.  The diagnosis will be validated later on with your response to the gluten-free diet.

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How difficult is the endoscopic biopsy?

While the procedure sounds difficult, it's really not.  Adult patients are sedated, to relax them.  They do not feel or remember the procedure at all afterwards.  Children have the procedure under general anesthesia, so they also don’t feel anything.  The small intestine does not contain nerve endings, so there is no pain or residual soreness after the tissue samples are taken.  The procedure lasts about 10 to 15 minutes, and usually, the only lingering symptom is a sore throat.

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How is celiac disease treated?

Once a positive diagnosis is confirmed, you need to go on a 100 percent gluten-free diet.  The vast majority of celiac patients that stick to their diet heal relatively quickly.  Their risk of further complications or symptoms drops to the same level as someone who does not have celiac disease.  Once you have been on the gluten-free diet for about six months, your doctor will order antigliadin IgA/antigliadin IgG blood tests to confirm that you are responding to the diet by producing fewer antibodies to gluten.  After that, you should have an annual follow-up appointment with a gastroenterologist or your primary care physician, for the antigliadin antibody testing, and to monitor symptoms, if any.

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I've been eating bread all my life. How do I get started on a gluten-free diet?

Starting out on a gluten-free diet can feel like a huge challenge at first.  The best way to start is to think positive, about all the foods you can still eat, including all plain fruits and vegetables, plain (not breaded or marinated) meats and fish, eggs, rice and rice pastas, most dairy products and so forth.  Concrete steps that you can take to help yourself get started are:

  • Meet with a dietician who can explain the diet to you (if your doctor does not provide a referral, ask for one);

  • Find a support group;

  • Search for specialty products online;

  • Always read food labels;

  • Find a good, gluten-free food guide;

  • Call food manufacturers to ask about any questionable ingredients.

Reading labels is essential.  More and more companies are mentioning gluten on food labels, with terms such as: "gluten-free," "contains gluten" or "wheat-free."  Bear in mind that wheat-free is not synonymous with gluten-free.  It's possible that the item contains rye or barley, or some gluten-containing derivative.  There will be times when you will need to call the company that manufactures the product to clarify a term on the label.  For example, if a product that you wish to eat says “seasonings,” or “natural or artificial flavorings” on the label, you will need to call and ask what the source of the food starch is.  If it’s wheat, it contains gluten.

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Will celiac disease make it harder for me to conceive?

If you are having trouble getting pregnant or you have had a miscarriage for unexplained reasons, consider being tested for celiac disease.  If you are diagnosed with the disease through a biopsy and your antibodies are given time to return to normal after going on a gluten-free diet, it is very often possible to conceive and carry a baby to term.

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How will celiac disease affect my pregnancy?

If you have celiac disease and you become pregnant, it is crucial to maintain a 100 percent gluten-free diet in order to deliver a healthy, well nourished baby.  Some women mistakenly believe that the gluten-free diet deprives the baby of nutrients.  In fact, the opposite is true.  In one study, researchers found that women with celiac disease who stay on the gluten-free diet during pregnancy experienced a small miscarriage rate similar to that of women who did not have celiac disease at all.  Pregnant women who went off the gluten-free diet miscarried at a rate of nearly 18 percent, much higher than the rate of miscarriage in healthy women.  Another study compared birth weights of babies whose mothers had celiac disease.  The babies whose mothers stayed on the gluten-free diet weighed more, on average, than the babies of mothers with undiagnosed celiac disease who consumed gluten during pregnancy. 

 Rest assured, that as long as you are on a 100 percent gluten-free diet, you are considered a healthy mother-to-be.  Celiac disease can only affect your baby when you haven’t been diagnosed or are not on the diet, although even under these circumstances, many women do have normal pregnancies.

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