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Am Fam Physician. 1998 Mar 1;57(5):1039-1042.
See related article on celiac disease.
Your doctor says you have celiac disease. What does that mean to you? It means some good things and some not-so-good things:
You can control celiac disease very easily by not eating foods containing glutens.
You don't need chemotherapy, radiation or surgery to treat celiac disease, as you might with some other serious diseases.
Excellent support groups of people with celiac disease can help you learn how to cope with this illness. The people in these groups can give you emotional support and helpful information about cookbooks and prepared food products.
By following the proper diet, you can reverse the damage caused to your body and live a healthy life again.
However, you'll have to stay on the gluten-free diet every day for the rest of your life.
If you “cheat” on your diet—even if you don't get any symptoms—you'll do further damage to your body. You could get osteoporosis, a neurological illness or even lymphoma (a kind of cancer).
What is celiac disease?
Celiac disease is a disorder that causes your intestines to react abnormally to the gluten that is in wheat, rye, barley and oats. Glutin is like a toxin (a poison) to people with celiac disease, because it damages their intestines.
Since I have celiac disease, what does gluten do to me?
Glutin causes damage to your intestines. This damage keeps your body from taking in many of the nutrients in the food you eat. This includes vitamins, calcium, protein, carbohydrates, fats and other important nutrients. This absorption problem deprives your brain, nervous system, liver, bones and all the other organs of your body of nourishment.
How did I get celiac disease?
Celiac disease runs in the family. You inherited the tendency to get this disease from your parents. If one member of your family has celiac disease, about one out of 10 other members of your family is likely to have it. Different illnesses caused by celiac disease can appear at any time in your life. Severe stress, physical trauma, a viral infection, having a baby or having surgery can turn your tendency to get celiac disease into a real illness.
What happens when a person has celiac disease?
When you inherited celiac disease, you inherited a tendency to get a variety of illnesses. Different illnesses can show up at different times:
An infant with celiac disease could have abdominal pain, diarrhea (even bloody diarrhea) and a failure to grow and to gain weight.
A young child could have abdominal pain with nausea and anorexia, anemia, mouth ulcers and allergic (atopic) dermatitis.
A child could be irritable, fretful, emotionally withdrawn or excessively dependent.
In later stages, a child could develop malnutrition, with or without vomiting and diarrhea. This would cause the child to have a large tummy, thin thigh muscles and flat buttocks.
Teenagers could have delayed puberty and short stature. Celiac disease might cause the loss of some hair (a condition called alopecia areata).
What other illnesses occur to adults with celiac disease?
Adults who begin to be ill with celiac disease might have a general feeling of poor health, with fatigue, irritability and depression, even if they have little or no intestinal problems. One serious illness that often occurs is osteoporosis. This is caused by a loss of calcium from the bones. One symptom of osteoporosis may be night-time bone pain. About 5 percent of adults with celiac disease have anemia. Lactose intolerance is common in patients of all ages with celiac disease. It usually disappears when they follow a gluten-free diet.
Celiac disease sounds really serious! How can I control it?
Celiac disease is serious. Fortunately you can control celiac disease just by not eating any gluten. You'll have to explain your problem and the gluten-free diet to your family members and ask for their support and help. It will take time and work for you and your family to learn how to avoid gluten in your diet. You can contact one of the celiac support groups listed at the end of this handout. These groups are excellent sources of information and advice. They'll help you find gluten-free foods and good recipes, and give you tips for successfully living with celiac disease. Many people in the support groups have been coping with celiac disease since childhood.
How can I be sure I have celiac disease?
Recently developed screening blood tests can help your doctor diagnose this disease. It's necessary to have these blood tests before you start a gluten free-diet. If you have dermatitis herpetiformis (an itchy, blistery skin problem), you have celiac disease. The diagnosis can be confirmed with a biopsy obtained through an endoscopic tube that is put into your intestines. The best confirmation, though, is a good response to a strict gluten-free diet.
What resources are there for people with celiac disease?
Here are cookbooks to start you on gluten-free eating:
“The Gluten-Free Gourmet: Living Well Without Wheat,” “More From the Gluten-Free Gourmet,” and “The Gluten-Free Gourmet Cooks Fast and Healthy: Wheat-Free and Gluten-Free with No Fuss and Fat,” written by Bette Hagman and published by Henry Holt and Co.
In these books, the author, who has celiac disease herself, shares with you what she has learned about a gluten-free diet.
Here's a general guide to living gluten-free:
“Against the Grain: The Slightly Eccentric Guide to Living Well Without Gluten or Wheat,” written by Jax Peters Lowell and published by Henry Holt and Co.
Here's where to find national and local support groups to get information about celiac disease:
Celiac Sprue Association/United States of America, Inc.
P.O. Box 31700
Omaha, NE 68131-0700
E-mail address: 76131.2257@CompuServe.com
American Celiac Society-Dietary Support Coalition
58 Musano Court
West Orange, NJ 07052
Celiac Disease Foundation
13251 Ventura Blvd., #1
Studio City, CA 91604
E-mail address: firstname.lastname@example.org
Gluten Intolerance Group of North America
P.O. Box 23053
Seattle, WA 98102-0353
E-mail address: GIG@accessone.com
Here are addresses where you can get information about celiac disease through the Internet:
You can send e-mail to this address (message: get celiac welcome):
This handout is provided to you by your family doctor and the American Academy of Family Physicians. Other health-related information is available from the AAFP online at http://familydoctor.org.
This information provides a general overview and may not apply to everyone. Talk to your family doctor to find out if this information applies to you and to get more information on this subject.
Copyright © 1998 by the American Academy of Family Physicians.
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