Celiac Disease

GENERAL INFORMATION:

What is it?

• Celiac (SEE-lee-ak) disease is also known as Celiac Sprue, or Non-Tropical Sprue. Celiac disease damages your small intestines so that they cannot break down and absorb food normally. Celiac sprue can develop at any age. Celiac disease that is left untreated for a long time, or for which treatment does not work can be very serious.
  
  
• Celiac disease causes your body to react badly to gluten or gliadin from grain. Gluten is a protein or building block that is found in wheat. Gliadin is found in barley, rye and oats. When you eat these grains, your immune system reacts by attacking and damaging the lining of your small intestines. The immune system is what protects your body from dangerous things like infections or disease.

What causes celiac disease? Scientists think that celiac disease may be caused by a problem with the immune system, but the exact cause of celiac disease is not known. You are more likely to have celiac disease if someone else in your family has it. This disease is most common in white people whose families come from northern Europe.

What are the signs and symptoms of celiac disease? Celiac disease can affect each person differently. You may live with the disease for a long time before you know you have it, or you may get it as a baby. Babies with celiac disease may grow slowly, or not at all. Following are the most common signs and symptoms of celiac disease:

• Anemia (less red cells in your blood).
  
  
• Bad smelling, loose, large bowel movements (BMs). They may also be oily or greasy and float. You may also have gas.
  
  
• Bone pain or osteoporosis (brittle bones).
  
  
• Long term diarrhea.
  
  
• Missed menstrual periods or infertility (trouble getting pregnant).
  
  
• Mouth sores.
  
  
• Numbness or tingling in your legs, and muscle cramps.
  
  
• Pale skin and bruising.
  
  
• Skin rash that is very itchy.
  
  
• Teeth that are discolored, and have lost their enamel.
  
  
• Stomach pain, bloating, and weight loss.
  
  
• Weakness, low energy, and not wanting to eat.

What can be done to diagnose and treat celiac disease? You will be seen in a clinic or caregiver's office. At times, you might need to go into the hospital for tests and treatment. You may need to see caregivers several times each month. You may need to work with a nutritionist. A nutritionist works with you to find the right diet plan for you, and can help make your new diet a regular part of your life. Caregivers will work with you to help you feel as well as possible.

• Tests: Because celiac disease can run in families, other family members may need to be tested for celiac disease. Some of the following tests are used to find out if you have celiac disease. Others are used to help caregivers plan your treatment.
  
  
  • Blood tests: You may need blood taken for tests. The blood can be taken from a blood vessel in your hand, arm, or the bend in your elbow. It is tested to see how your body is doing. It can give your caregivers more information about your health condition. You may need to have blood drawn more than once.
    
    
  • BM tests: Your caregivers will have you eat a high fat diet for one day. After 24 hours, you will need to collect your BMs for two days. They are then sent to the lab for tests.
    
    
  • Endoscopic tissue biopsy: Caregivers will give you medicines to relax or sleep. An endoscope is put down your throat and into your stomach. An endoscope is a long, thin tube with a light and a magnifying glass on the end. A TV camera may be put on the eye piece of the scope so pictures can be taken. Caregivers can see past your stomach and into your intestines with this test. A small piece of tissue is removed from your intestine and is sent to the lab for tests.
    
    
  • Small bowel barium x-rays: These are pictures taken of the organs inside your abdomen or belly. Barium is a thick liquid that helps the intestines show up better on x-ray. A barium swallow helps caregivers find out what is causing your problem. Caregivers also use these pictures to look for changes in your intestines.
    
    
  • Bone densitometry: This is a type of x-ray that looks at your bones. Caregivers can look at the pictures to see if you have osteoporosis (brittle bones).
  
  
• Treatment options: Celiac disease is treated by not eating any foods that have gluten in them. This includes anything made with wheat, rye, barley or oats. Gluten is also in many packaged foods and is added to food by restaurants. Your caregiver may have you meet with a dietitian or nutritionist. These caregivers can teach you about the life long changes you must make in your diet. Ask your caregiver for more information about a gluten-free diet.
  
  
  • You may feel better in a few days after you start your new diet. Damage in your intestines is usually completely healed in three to six months, but may take longer.
    
    
  • Medicines like steroids are sometimes used to treat symptoms that do not get better with diet changes. Some of the medicines used to treat celiac disease have side effects. Ask caregivers for information about possible side effects.
    
    
  • Other medicines may also be used to treat your celiac disease. Your caregiver will tell you if you need them.
    
    
  • You may need short-term IV fluids, vitamins, and other liquids to balance your body system and give you nutrition. These are given through a tube into your vein.
    
    
  • You may need to take a vitamin supplement that contains iron, folate, and vitamin B12. Your body may also need a calcium and vitamin D supplement. Ask your caregiver if you should take vitamin supplements for celiac disease.

Where can I go for support? Celiac disease is a life-changing disease for you and your family. Accepting that you have it is hard. You and those close to you may feel angry, sad, or frightened. These are normal feelings. Talk to your caregivers, family, or friends about your feelings. You may also want to join a support group. This is a group of people who have health problems just like yours. Call or write one of the following support groups for more information about celiac disease.

• Celiac Disease Foundation
  13251 Ventura Blvd #1
  Studio City, CA 91604
  Phone: 1-818-990-2354
  Web Address: www.celiac.org
  

• Celiac Disease Foundation
  13251 Ventura Boulevard, Suite 1
  Studio City, CA 91604
  Phone: 1-818-990-2354
  Web Address: http://www.celiac.org
  

• Celiac Sprue Association
  P.O. Box 31700
  Omaha, NE 68131
  Phone: 1-402-558-0600
  Web Address: http://www.csaceliacs.org
  

CARE AGREEMENT:

You have the right to help plan your care. To help with this plan, you must learn about your health condition and how it may be treated. You can then discuss treatment options with your caregivers. Work with them to decide what care may be used to treat you. You always have the right to refuse treatment.

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