Celiac Disease

Celiac disease is a digestive disease that damages the small intestine and interferes with the absorption of nutrients from food because of the body’s reaction to gluten, which is found in wheat, rye and barley. At CHOC Children’s, our pediatric gastroenterologists and registered dietitians work with patients and their families to properly diagnose celiac disease and get them going on a gluten-free diet.

When people with celiac disease eat foods containing gluten, their immune system responds by damaging the small intestine. Tiny finger- and hair-like protrusions, called villi, line the small intestine. The villi “grab” (absorb) nutrients from food and send those nutrients into the bloodstream. In people with celiac disease, their immune system damages villi and malnutrition occurs, regardless of how much food the person consumes.

Celiac disease is more common in people of European ancestry, Caucasians and people with type 1 diabetes. More than 2 million Americans have been diagnosed with celiac disease. However, recent studies have suggested that as many as one in every 133 Americans may have it, and that the disease is under diagnosed.

What causes celiac disease?

Celiac disease is a genetic disease that runs in families. A person can have the disease and not know it until it is triggered by severe stress, pregnancy, surgery, physical injury, infection or childbirth.

What are the symptoms of celiac disease?

Celiac disease affects people in different ways. Some persons may develop symptoms as children, whereas others do not experience symptoms until adulthood. Some may have diarrhea and abdominal pains, while others have irritability, depression, constipation or even menstrual cycle abnormalities with the onset of the disease.

While the following symptoms can be seen with celiac disease, each individual may experience symptoms differently. Symptoms may include:

  • Chronic diarrhea
  • Weight loss
  • Recurring abdominal pain and bloating
  • Gas
  • Pale, foul-smelling stool
  • Unexplained anemia
  • Muscle cramps and/or bone pain
  • Pain in the joints
  • Tingling numbness in the legs
  • Delayed growth
  • Chronic constipation
  • Fatigue
  • Painful skin rash
  • Missed menstrual periods (which is linked to excessive weight loss)
  • Tooth discoloration or loss of enamel.

Some people with celiac disease are asymptomatic, because the undamaged part of the small intestine is still able to absorb enough nutrients. However, these people are still at risk for complications of the disease.

The symptoms of celiac disease may resemble other medical conditions or problems. Always consult your child’s doctor for a diagnosis.

How is celiac disease diagnosed?

Since symptoms of celiac disease are similar to those of other digestive diseases such as Crohn’s disease, irritable bowel syndrome, ulcerative colitis, diverticulosis and intestinal infections, it can be difficult to diagnose.

In addition to a complete medical history and physical examination, diagnostic procedures for celiac disease may include the following:

  • Blood work to measure the level of antibodies to gluten. Researchers have found that people with celiac disease have higher than normal levels of certain antibodies in their blood. Learn more about blood tests at CHOC.
  • Biopsy. To diagnose celiac disease, the doctor may remove a tiny piece of tissue from the small intestine to check for damage to the villi. During the procedure, the doctor eases a long, thin tube, called an endoscope, through the mouth and stomach into the small intestine. A sample of tissue is then taken using instruments passed through the endoscope.  Learn more about endoscopy.

What is the treatment for celiac disease?

A gluten-free diet is the only treatment for people with celiac disease. Adhering to a gluten-free diet is a lifetime requirement, as eating any gluten will further damage the intestine.

For most people, eliminating gluten from their diet will stop symptoms, heal intestinal damage that has already occurred and prevent further damage. Your child will typically see an improvement in symptoms within days of starting the diet. The small intestine is usually completely healed within three to six months, with villi intact and working.

Tips for Following a Gluten-free Diet

Gluten-free foods seem to be everywhere these days. Restaurants and cafes regularly feature gluten-free dishes and pastries. Supermarkets offer gluten-free bread, rolls and crackers.

Many people are reducing or eliminating their dietary intake of gluten, a protein found in wheat, rye, barley and some other grains. But only those who have celiac disease need to completely stop eating gluten. Celiac disease is a condition in which the immune system is abnormally sensitive to gluten. Others who have a gluten sensitivity may simply feel better if they eat less of it.

Here are steps to take when getting gluten out of your child’s diet.

Rethink Grains

  • Avoid all products with barley, rye, triticale (a cross between wheat and rye), farina, graham flour, semolina and any other kind of flour, including self-rising and durum, not labeled gluten-free.
  • Be careful of corn and rice products. These don’t contain gluten, but they can sometimes be contaminated with wheat gluten if they’re produced in factories that also manufacture wheat products. Look for such a warning on the package label.
  • Go with oats. Recent studies suggest those with gluten sensitivities and celiac disease can eat oats as long as they are not contaminated with wheat gluten during processing and are labeled gluten-free.
  • Substitute potato, rice, soy, amaranth, quinoa, buckwheat or bean flour for wheat flour. You can also use sorghum, chickpea or Bengal gram, arrowroot and corn flour, as well as tapioca starch extract. These act as thickeners and leavening agents.

Become a Label Expert

  • Know terms for hidden gluten. Avoid einkorn, emmer, spelt, kamut, wheat starch, wheat bran, wheat germ, cracked wheat and hydrolyzed wheat protein. It is also important to stay away from emulsifiers, dextrin, mono- and di-glycerides, seasonings and caramel colors because they can contain gluten.
  • Check the labels of all foods. Gluten can be found in food items you would never suspect. Here are some likely to contain gluten:
    – Bouillon cubes
    – Brown rice syrup
    – Candy
    – Chips, potato chips
    – Cold cuts, hot dogs, salami and sausage
    – Communion wafers
    – French fries
    – Gravy
    – Imitation fish
    – Matzo
    – Rice mixes
    – Sauces
    – Seasoned tortilla chips
    – Self-basting turkey
    – Soups
    – Soy sauce
    – Vegetables in sauce.

Here are ideas to better make the transition to a gluten-free diet:

  • Separate all kitchen items used for preparing gluten and gluten-free foods. These include cooking utensils, cutting boards, forks, knives and spoons.
  • When eating out, if you’re not sure about the ingredients in a particular dish, ask the chef how the food was prepared. You can also ask whether a gluten-free menu is available. Most restau-rants have a website where you can review the menu in advance.
  • Ask your pharmacist if any of your child’s medications contain wheat or a wheat byproduct. Gluten is used as an additive in many products from drugs to lipstick. Manufacturers can provide a list of ingredients on request if they are not named on the product.
  • Watch portion sizes. Gluten-free foods may be safe to eat, but they’re not calorie-free.

If your child still feels symptoms on a gluten-free diet, double check that they are not still consuming small amounts of gluten hidden in sauces, salad dressings and canned soups or through additives, such as modified food starch, preservatives and stabilizers made with wheat.

As your family members become experts in reading food and product labels, you’ll be able to detect hidden sources of gluten before they can cause a problem.

FDA Defines Gluten-Free for Food Labeling

Woman looking at package food labeling

On August 2, 2013, the Food and Drug Administration (FDA) issued a long awaited final rule defining “gluten-free” (GF) for food labeling. This GF ruling now mandates food manufacturers to follow practices to ensure food labeled either “gluten-free”, “without gluten,” “free of gluten,” and “no gluten” must meet a threshold standard of <20 ppm (parts per million) of gluten. This threshold is the amount that can consistently be detected in foods using valid scientific analytical tools, as well as the level shown through research to be tolerated with the majority of people with celiac disease. Now individuals requiring a GF diet will feel more confident when selecting food products labeled GF.