Imagine that you can’t eat any food that contains wheat, barley, rye or gluten. Unless you find or make special gluten-free versions, you can’t eat bread, pasta, cake, cookies or pies. You can’t have a beer. You have to read the list of ingredients on every processed food. Many soups, cereals, puddings, baked beans and flavored yogurts are off-limits. And you can’t flavor your foods with most kinds of soy sauce, gravy, sauces, marinades or salad dressings. You have to watch out for gluten in supplement, vitamin and medicine pills. It’s even in some lipsticks, toothpastes, and the glues on stamps and envelopes.
It’s tempting to cheat. But if you do, your immune system will attack your own body. It will damage or destroy the tiny, fingerlike villi that stick out from the lining of your small intestine and absorb nutrients from food. Without healthy villi, you’ll end up malnourished no matter how good your diet is. You may have symptoms that range from diarrhea to depression. And your risk of osteoporosis (weakened bones) and certain cancers will increase. If you’re female, you may have a hard time getting pregnant and a high risk of miscarriage. With consequences like those, it’s not worth cheating.
Celiac disease is an autoimmune disorder that runs in families. People with celiac disease have higher-than-normal rates of other autoimmune diseases, too. These include certain thyroid and liver diseases, lupus (SLE), type 1 diabetes, rheumatoid arthritis and Sjögren’s syndrome (an autoimmune disease that causes dry eyes and mouth).
You can be born with active celiac disease, or it may be inactive. Symptoms can appear at any age. Surgery, pregnancy, childbirth, a viral infection, or severe emotional stress can trigger it. But it’s hard to spot because many disorders have similar symptoms. Many health care providers are not knowledgeable about the disease. Many labs aren’t skilled in testing for celiac disease. As a result, it may be years between the first symptoms and diagnosis.
Celiac disease is also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy.
How common is celiac disease?
Celiac disease used to be less common. Now experts estimate that 1 out of every 100 people has it, although most aren’t aware they do. Rates are higher if your parent, child, brother or sister has been diagnosed with it. It’s common all around the world. And it’s not just being diagnosed more often. Analysis of blood samples from 50 years ago indicate that rates are now 4 times higher. We don’t know why, but some experts suspect it’s because we eat much more wheat than we used to.
What are the symptoms of celiac disease?
Celiac disease affects people differently. Some people have no symptoms. Yet they can still develop complications of the disease over time. Symptoms appear at different ages.
Symptoms of celiac disease may include:
- frequent bloating, gas and pain
- chronic diarrhea and/or constipation
- vomiting
- pale, foul-smelling, or fatty stool
- weight loss
- fatigue
- unexplained low red blood cell count (anemia)
- bone or joint pain
- arthritis
- low bone density (osteoporosis and osteopenia)
- anxiety or depression
- tingling numbness in the legs (from nerve damage)
- seizures
- missed periods, miscarriages, infertility (men and women)
- discolored teeth, loss of enamel
- canker sores
- itchy skin rash called dermatitis herpetiformis
- lack of normal weight gain (failure to thrive) in infants
- delayed growth or puberty in children
Long-term complications include malnutrition, liver diseases, and cancers of the intestine.
How is celiac disease diagnosed?
It’s often hard to recognize celiac disease because many of its symptoms are the same as those of other diseases. It may be confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, Crohn’s disease, diverticulitis, intestinal infections, and chronic fatigue syndrome.
A blood test can help diagnose celiac disease. People with celiac disease have higher than normal levels of certain proteins that react against the body’s own cells or tissues (autoantibodies) in their blood. But the test isn’t 100% reliable, especially in young children. If you’re going to be tested, keep eating a regular diet that includes foods with gluten. If you avoid gluten, the results may be negative even if you have celiac disease. If test results are negative but celiac disease is still suspected, additional blood tests may be needed.
If your symptoms and test suggest celiac disease, your provider will do a biopsy of your small intestine. A long, thin tube is threaded down through your mouth to get a tiny piece of tissue and check to see if the villi are damaged.
Should I be screened?
Americans are not routinely screened for celiac disease. But since celiac disease is hereditary, family members may want to be tested.
What is the treatment?
The only treatment for celiac disease is to follow a gluten-free diet. It’s not easy. It helps to work with a dietitian. You’ll learn how to read ingredient lists and identify foods that contain gluten. It will help you learn what to buy at the grocery store or at restaurants, and what you can eat at parties or other people’s homes.
The good news is that most people start getting better within days of starting the diet. The damage to their intestines starts to heal. The small intestine usually heals completely in 3 to 6 months in children and younger adults. It may take up to 2 years for older adults. Other problems like delayed growth and discolored teeth may not improve.
People with celiac disease have to avoid gluten for the rest of their lives to stay well. Eating even a tiny amount of gluten can damage their small intestines.
Some people with celiac disease don’t get better on the gluten-free diet. That’s usually because there are still small amounts of gluten in their diets. In rare cases, people with severely damaged intestines continue to have symptoms. Their intestines don’t heal enough. They may need to get nutrients intravenously, and be monitored for complications.
What is the gluten-free diet?
You can’t eat barley, rye, triticale (a cross between wheat and rye), all wheat flours, farina, semolina, wheat starch, wheat bran, wheat germ, cracked wheat, hydrolyzed wheat protein, einkorn, emmer, spelt or kamut. But many other foods may contain gluten, too. They include bouillon cubes, chips, candy, cold cuts, hot dogs, salami, sausage, communion wafers, French fries, gravy, imitation fish, matzo, rice mixes, sauces, seasoned tortilla chips, self-basting turkey, soups, soy sauce and vegetables in sauce.
You can get lots of tips on grocery shopping, label reading, dining out and travel on the
Celiac Disease Foundation’s Web site. They stress that you shouldn’t start the diet unless you’ve been diagnosed by a qualified health care provider.
That’s very restrictive. Aren’t there gluten-free forms of these foods?
You bet. Just search online for gluten-free foods and you’ll quickly find sources for breads, pastas, cookies, crackers, pretzels, cereals, condiments, sauces, salad dressing, soups, and much more. You can also find recipes, cookbooks, and ingredients. Gluten-free bread, pasta, and other products are often sold at stores that carry organic foods, and are sometimes available at regular stores.
An increasing number of restaurants offer gluten-free dishes. You can check for those in your area at the Gluten-Free Restaurant Awareness Program Web site.
I’m cooking dinner for someone with Celiac disease. What is a simple meal I can safely serve?
- Appetizer: nuts
- Entree: steak or salmon with a bit of olive oil to keep it moist (no sauces or marinades)
- Side dish: baked potatoes with full-fat sour cream, corn on the cob with butter, or yams
- Vegetable: any fresh vegetable, or a salad with vinaigrette dressing
- Wine
- Sorbet or sherbet
Be sure that all surfaces, utensils, and pans are clean to avoid any contamination with products that contain gluten.
Updated on 6/30/10 by Jennifer Johnson, BA English composition, Northwestern University. Reviewed by Steve Silverstein, MD. Published on 7/19/10.
References
- Celiac Disease at
http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/ - Gluten Sensitivity at http://www.gluten.net/downloads/print/glutenintoleranceflat.pdf
- Mortality in Celiac Disease, Intestinal Inflammation, and Gluten Sensitivity Peter H. R. Green, MD JAMA. 2009;302(11):1225-1226 at
http://jama.ama-assn.org/cgi/content/full/302/11/1225 - Ludvigsson J, et al "Small-intestinal histopathology and mortality risk in celiac disease" JAMA 2009; 302: 1171-78.
- Fasano A, Berti I, Gerarduzzi T; et al. Prevalence of celiac disease in at-risk and not-at-risk groups in the United States: a large multicenter study. Arch Intern Med. 2003;163(3):286-292.
- Rubio-Tapia A, Kyle RA, Kaplan EL; et al. Increased prevalence and mortality in undiagnosed celiac disease. Gastroenterology. 2009;137(1):88-93.
- Telega G, Bennet TR, Werlin S. Emerging new clinical patterns in the presentation of celiac disease. Arch Pediatr Adolesc Med. 2008;162(2):164-168.
- The Expense of Eating With Celiac Disease at
http://www.nytimes.com/2009/08/15/health/15patient.html?ref=health
Copyright © 2010 McKesson Health Solutions. All Rights Reserved.
Learn more about healthy living at Blue Health Connection