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Living With Celiac Disease

Identifying and adjusting to Celiac disease

Gluten-free breadEven after years of hearing about the benefits of carbo-free diets, bread and pasta still seem like such wholesome contributions to a meal. In fact, it's hard to imagine not being able to indulge in them.

There are, however, some people who aren't able to have foods that contain certain grains like wheat, barley and rye. For those with celiac disease, their bodies' reaction to the proteins in these grains can cause serious damage to their intestines.

Recent studies have suggested that one in every 133 Americans may have celiac disease and 97 percent of individuals with celiac disease have not been diagnosed. For those who have been diagnosed, learning how to properly manage this disease can be a challenge. That's why it's so important to work with a specialist.

"The symptoms for celiac disease can be similar to those for so many other conditions, that it's important that you see someone who's well-versed on celiac and how it can reveal itself," says Mark T. DeMeo, MD, an expert on celiac disease and the head of the Celiac Disease Program at Rush. "Some people's symptoms can be so vague that they seem to be asymptomatic. Unfortunately, the milder symptoms don't necessarily mean that the disease isn't causing damage to the intestines."

You'll want to talk to a specialist if you experience:

  • Bowel problems after eating products that contain wheat, spelt, rye and barley
  • Gas or bloating
  • Change in bowel habits
  • Diarrhea
  • Constipation
  • Diarrhea predominant irritable bowel syndrome (spastic intestines or colon)
  • Unexplained anemia
  • Unexplained fatigue
  • Irregular results for your liver enzymes
  • Unexplained neurological symptoms, such as numbness or tingling in the legs (especially neuropathy)
  • Unexplained infertility or depression

You may experience one or more of these symptoms. If they won't go away, become more severe or are related to eating certain foods, see a specialist. 

Changing your diet

If you are diagnosed with celiac disease, you'll want to be on a gluten-free diet. "The good news is that there are now more choices for someone with celiac disease," says DeMeo. "There are a number of specialty stores that carry gluten-free products and more restaurants that cater to someone on a gluten-free diet. And, thanks to the Internet, you can buy a number of specialty foods online and have them shipped to your home." 

For those on a gluten-free diet, the American Dietetic Associations suggests closely reading labels and looking for (and avoiding) the following ingredients:

  • Wheat, rye, triticale, kamut and oat
  • Flour, self-rising flour, enriched flour, graham flour, durum flour, gluten flour
  • Barley
  • Malt or malt flavorings
  • Food starch and modified food starch
  • Emulsifiers
  • Stabilizers
  • Thickeners
  • Hydrolyzed vegetable protein (HVP)

This list and the following one are just to give you an idea of things to avoid. If you've been diagnosed with celiac disease, you'll want to work closely with a dietitian who specializes in the disease. 

While it's difficult enough to avoid gluten, you also have to be careful of "hidden gluten." Wheat and other grains are often used as fillers in processed foods. The National Institutes of Health offers this list of foods that may contain gluten:

  • Bouillon cubes
  • Brown rice syrup
  • Chips/potato 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
  • Vegetables in sauce

As you can imagine, it's not easy to avoid gluten. That's why it's so important to work with a dietitian. 

"The good news about a gluten-free diet is that it takes a lot of processed foods out of your diet, which in itself can make people healthier and feel better," says DeMeo.

October 2007