What is Celiac Disease

by Joseph Murray, MD

Celiac disease (a.k.a. celiac sprue) is a disease of the small intestine that is triggered by the eating of grain proteins from wheat, barley, rye, and occasionally oats. The immune system’s reaction to the protein causes damage to the lining of the small intestine. This damage leads to such symptoms as diarrhea, weight loss, bloating, gas, nausea, vomiting, and abdominal pain. Failure to absorb nutrients and vitamins can lead to anemia, osteoporosis, nerve damage, infertility, and growth failure. Celiac disease is more common in family members of individuals with known celiac disease and individuals with juvenile onset diabetes.

Celiac disease may be detected by special blood tests, but the diagnosis is confirmed by having a biopsy of the small intestine. This is an outpatient test which is commonly performed by a gastroenterologist. It is important that the patient not go on a gluten-free diet before testing as this may invalidate the test results. Once diagnosed, a gluten-free diet will result in healing of the intestine. Resolution of the symptoms may take from one to six months. The gluten-free diet is life-long. While the intestine may heal, it is always sensitive to the presence of the proteins. Rarely is any other treatment needed.

Celiac Disease: Frequently Asked Questions

What is celiac disease?  Celiac is a hereditary, autoimmune disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate proteins called gluten, found in wheat, rye and barley.

What are symptoms of celiac?  Symptoms associated with celiac may include gas, recurring stomach pain and bloating, constipation or diarrhea, weight loss or gain, fatigue, unexplained anemia, bone or joint pain or osteoporosis and fertility or neurological problems. Children with celiac often experience delayed growth as a result of malnutrition. However, some people who test positive for celiac may exhibit no symptoms at all. These "silent celiacs" are at risk for the same long-term complications as other celiacs -- despite their lack of symptoms.

What is dermatitis herpetiformis? What does it have to do with celiac disease?  Dermatitis herpetiformis (DH) is a severely itchy skin condition that often starts abruptly, affecting the elbows, knees, buttocks, scalp, and back. It usually starts as little bumps that can become tiny blisters and then are usually scratched off. DH can occur in only one spot, but more often appears in several areas. While most individuals with DH do not have obvious GI symptoms, almost all have some damage in their intestine. They have the potential for all of the nutritional complications of celiac disease. It is believed by some GI professionals that most DH patients do indeed have celiac disease.

Who does celiac affect?  Celiac affects 2.2 million people -- one in 133 Americans. An overwhelming 97% of the affected population is currently undiagnosed or misdiagnosed.

What are the causes of celiac?  Why celiac is triggered at a certain point is unknown. However, it is the only autoimmune disease that has a known culprit – gluten.

How is celiac treated?  While some drug treatments are currently in the research and development phases, there is no known medical or pharmaceutical cure for celiac. The only way to treat celiac is to follow a 100% gluten free diet.

Attitude is everything when living a gluten free lifestyle. A positive attitude, rooted in the knowledge that living gluten free can eliminate symptoms and help one's body heal from the ravages of celiac, helps patients as they make the extra effort to become more educated, read labels, speak to restaurant staff and resist the temptation to "cheat" on the diet.

What are the long-term effects of untreated celiac?  In addition to damage of the small intestine, long-term effects of undiagnosed or untreated celiac disease include cancer, osteoporosis, miscarriage, an increased risk of fetal congenital malformation in pregnant women and delayed growth and short stature in children. While symptoms may show improvement when a gluten free diet is followed, more research is needed to determine long-term consequences of celiac and, ultimately, discover a cure.

Are the villi permanently damaged in a patient with Celiac Disease and how long does it take for the villi to return to normal?
The villi are not permanently damaged. The intestine is an organ, which renews itself every three days. Therefore, if the damage is exclusively due to CD, the villi will be reformed once on a gluten-free diet. The time for the villa to return to normal varies between individuals.

Can I outgrow Celiac Disease?  If you are a biopsy proven Celiac, you will not outgrow the disease since Celiac Disease is now considered to be an autoimmune disorder like diabetes and rheumatoid arthritis.

Is there hidden gluten?  Yes, you should always be careful before ingesting anything. Take candy bars for instance. Snickers full size are gluten free, however Snicker Pop'ables are not.

Is Celiac Disease a food allergy?  No, Celiac Disease is not a food allergy; rather it is an autoimmune disease. Food allergies, including wheat allergy, are conditions that people can grow out of. This is not the case with Celiac Disease.

What about oats?  Many recent studies indicate that the protein found in oats may not be harmful to most people with celiac disease. However, there is concern that the oats may be contaminated with wheat during the milling and processing. Please consult your physician or dietitian before adding oats to you or your child's diet.

Tips for Celiacs

Always check ingredients.  Products that don't seem like they would contain gluten may contain it. Many standard rice and corn cereals contain malt. There are organic cereals instead, that use less additives and may be safe.

Companies change ingredients.  You may have eaten a product hundreds of times and feel safe with it. However, a company can change the ingredients without notice and it could now contain gluten.

Organic doesn't mean gluten-free.  Wheat, rye and barley are organic products, so just because something is organic, it isn't necessarily gluten-free. Check the ingredients on these products too.

Try heating it up.  Many gluten free foods (especially breads) taste better when heated or toasted.

Vegetarians: watch the gelatin.  Since gluten acts as a binding element in foods, it may be replaced in gluten-free flours by xanthum gum, guar gum or gelatin to give gluten-free foods elasticity. Gelatin is often not a vegetarian product.

Restaurants may re-use their oils.  After a restaurant uses an oil to cook onion rings, chicken fingers, etc, they may re-use the same oil to fry other items such as tortilla chips. Make sure to ask if the oil was ever used to cook gluten containing foods, not just if it was cooked in the same vat.

Make a trade.  When your salad comes out with croutons and you ask for a new one, keep the original salad so the restaurant doesn't just remove the croutons and bring it back to you. When the new salad comes out, trade the one with croutons for the one without. The same rule applies if you order items such as a sandwich or a hamburger without the bread. Some restaurants have been known to just remove the bread and bring the same one back to you.

Call ahead.  When making a reservation at a restaurant or when going to a banquet like a wedding, call ahead and alert the chef or manager that you will be coming and will need a gluten-free meal. This will give them time to do some research, ask questions, and prepare something for you with less risk of contamination.

Take a dining card.  When dining out on the spur of the moment or going to a restaurant where you're not comfortable with the staff's understanding of Celiac Disease, take along a dining card. These explain gluten and where it is found (some even come in other languages for international dining). Give this to the waiter or waitress who can consult with the manager or chef to help you choose a meal that is safe. It is also helpful to tell the host or hostess of your dietary needs before you are seated so he or she can tell you if the restaurant can accommodate you.

Go when it's not busy.  When the wait staff and the cooks are busy, they may be less careful to avoid cross contamination or look into all of the ingredients. You may also have less selection because the restaurant staff won't have the time to research what foods are safe.

Bring your own.  Many restaurants will allow you to bring your own bread and some may even cook your own gluten free pasta for you. Make sure they use a fresh pot and fresh water to cook it. This theory applies to home parties too. Talk to the host ahead of time to let them know about your sensitivity to gluten. If the menu does not appear to be gluten-free, consider eating before you arrive.

Flour coating.  Some meats, like chicken, and other foods at restaurants are lightly coated in flour before they are cooked. Ask the cook before ordering to make sure your items are not coated.

Cheer up, you're not alone.  While it may seem like the whole world is eating your favorite gluten containing foods right in front of you, the good news is that you're not alone. Celiac Disease affects 1 in 133 people.

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