Like so many people, Lisa didn’t quite know what was wrong with her stomach but she seemed to suffer from flu-like symptoms, including an irritable bowel and other abdominal discomfort. It took two years and many visits to different healthcare providers before Lisa would learn her problem had a name – celiac disease (CD). Lisa’s journey to a diagnosis is similar to those of other people with CD.

One reason it’s difficult to diagnose is that CD mimics many other disorders. Celiac disease occurs when a person reacts to gluten, which is found primarily in wheat, rye and barley. And for some people, even oats set off the reaction. When someone with this intolerance eats these foods an autoimmune response occurs in their small intestine, resulting in damage to the surface of the small intestine to the degree that it blocks their ability to absorb nutrition from food.

What Lisa and others with similar symptoms have come to learn is that a change in diet and lifestyle can go a long way in minimizing the symptoms and helping someone live with CD. While there’s no cure, celiac disease can be managed by not eating foods and using products containing gluten including some vitamins, skin care products and even over-the-counter and prescription drugs.


Lisa was diagnosed with CD more than 10 years ago and celiac disease is just as mysterious now as it was then for many people. The National Institutes of Health predicts that as many as 1 in 133 Americans have the disease, yet only about 5% have been diagnosed. If you have a parent, sibling, or grandparent with CD your risk of having the disorder rises to 1 in 22 people.

According to experts at the Mayo Clinic, when left untreated, CD leads to malnutrition. Most problems are seen with deficiencies in vitamins A, D, E, K, B-complex, and folate. Mineral deficiencies also include calcium, phosphorus, zinc, magnesium, and iron. There can be an increased risk of bone loss (osteoporosis) because of the lack of vitamin D absorption, increased risk of kidney stones due to lack of calcium, lactose intolerance, neurological problems including the development of seizures, other autoimmune diseases, and even cancers including intestinal lymphoma and bowel cancer.

Some people with CD have no symptoms at all while others may visit their healthcare provider complaining of normal health concerns including stomach aches, tiredness, diarrhea or constipation. The most often-caught cases are among babies and young children who fit the diagnosis of failure to thrive because of their lack of growth and weight gain. What experts know about celiac disease is that it’s largely genetic.

Lisa’s symptoms were typical and went unrecognized for years. It’s even harder for someone with atypical symptoms to get diagnosed. In fact up to 90% of individuals with CD are thought to have atypical symptoms. With more than 200 symptoms related to the disorder and no one major list of leading symptoms, it’s simply hard to diagnose.

Among adults, experts estimate it takes on average 11 years and visits to more than three different healthcare providers before a person with CD gets an accurate diagnosis. The first step is blood work to test for higher than normal levels of certain antibodies, commonly referred to as a Celiac Panel, including a tTG (tissue transglutaminase) test and an EMA (anti–endomysium) test. If the blood panel is positive, it’s the first indication that the person may have CD. However, a negative blood panel doesn’t necessarily rule out the disease.

The second step is a small bowel biopsy, which is the gold standard in testing for the disease. During the procedure, a gastroenterologist uses a small tube to inspect and take samples of the lining of the upper portion of the small intestine. If the inspection or the specimens show damage to the small intestine, celiac disease is almost certainly present. The third step in the diagnosis process is still needed, however. And that’s the elimination of all wheat, barley, rye, and oats and any foods containing these products from a person’s diet, something commonly called a gluten-free diet. If a person stops eating all foods containing gluten and their symptoms improve, then CD is confirmed.


There is no cure for celiac disease—only a gluten-free diet for life can help sufferers manage the symptoms. And this isn’t necessarily as easy as it sounds given the prevalence of gluten in our food system and in ways that aren’t always identifiable on food labels.

Listen to anyone suffering with the disease, like Lisa, and you’ll hear similar themes emerging: difficulties in getting a diagnosis, lack of awareness among healthcare providers regarding how CD affects other health care conditions, and an ongoing need for information to manage the condition individually. Many people with CD have found support in working with a gastroenterologist and a dietitian to manage the disease. Local CD support groups can also be good sources of information.

Living with CD means being an avid food label reader, being assertive enough to call manufacturers to ask about gluten content in their products, and being creative in modifying recipes to get rid of the gluten.

What happens if you slip up and eat gluten? You may have mild to severe symptoms, or you may have no symptoms at all—but that doesn’t mean that the disease isn’t damaging your body—if you’ve tested positive for CD even gluten in trace amounts will still affect your organs and overall nutritional health.

Web sites also offer support, recipes, tips, and warnings regarding products in which hidden gluten lurks. If you notice abdominal problems, particularly after you eat foods containing gluten, talk to your healthcare provider. Testing is easy and it may well put you on the path to a gluten-free lifestyle to manage your symptoms.


More than 200 symptoms are associated with celiac disease. Their type and severity seem to be related to the level of intestinal damage and for how long a person’s nutritional absorption has been impaired. Simply said, the longer you’ve had the disease the worse your symptoms could be.

The most common symptoms include:

Physical symptoms: abdominal cramping, bloating, distention, constipation, diarrhea, fatigue, passing gas, infertility or repeat miscarriages, migraine headaches, unexplained weight loss or an inability to gain weight, muscle cramping, and pain in your bones and joints.

Emotional symptoms: depression, irritability, moodiness.

Symptoms seen in children: any of the above along with growth failure, vomiting, and a distended abdomen.

• Fresh meats, fish and poultry (not breaded or marinated)
• Most dairy
• Fruits
• Vegetables
• Rice
• Potatoes
• Gluten-free flours (rice, soy, corn, potato)

About the Author: Jean Guest, RD, LMNT, is a registered dietitian and the dietary advisor to the Celiac Sprue Association in Omaha, NE.