Sarasota Edition

Under-diagnosed and Dangerous Left untreated, celiac disease can have serious complications.

By Katie R. Agnello, M.D.

She’s tired all the time and frequently feels bloated. Her joints have started aching, but now in her late 60s, she figures that’s just advancing years. At her last annual checkup, her primary doctor noted slight anemia (low red cell count) in her blood test results, which could help explain the fatigue.

These various symptoms may have distinctly different causes, or they could have one root cause: celiac disease.

One of the most under-diagnosed conditions in modern health care, celiac disease affects as many as one in 141 Americans, although most don’t know it.

Celiac disease is a digestive disorder that damages the small intestine. The disease is triggered by eating foods containing gluten, which is a protein found naturally in wheat, barley and rye. It’s common in foods such as bread, pasta, cookies and cakes. Many pre-packaged foods, lip balms and lipsticks, hair and skin products, toothpastes, vitamin and nutrient supplements, and, rarely, medicines, contain gluten.

Symptoms vary, so celiac disease can be difficult to diagnose. People with celiac disease who have no symptoms can still develop complications from the disease over time if they do not get treatment. Complications can include poor absorption of nutrients leading to anemia, brittle bones, and various other conditions associated with nutritional deficiencies. Difficulty conceiving or carrying a baby to term is also linked to celiac disease.

You’re Not Making It Up – You’re Sick
Many people with celiac disease don’t know they have it, and the multitude of symptoms can make people around them think they’re making it up. Sufferers become frustrated trying to address a host of different symptoms when the real problem is lack of proper diagnosis.

Roughly 1.8 million Americans have celiac disease, but around 1.4 million of them are unaware that they have it, according to a Mayo Clinic-led analysis reported in the American Journal of Gastroenterology.

Celiac disease is different from gluten sensitivity or wheat intolerance. If you have gluten sensitivity, you may have symptoms similar to those of celiac disease, such as abdominal pain and tiredness. Unlike celiac disease, gluten sensitivity does not damage the small intestine.

Celiac disease is also different from a wheat allergy. In both cases, your body’s immune system reacts to wheat. However, some symptoms in wheat allergies, such as having itchy eyes or a hard time breathing, are different from celiac disease. Wheat allergies also do not cause long-term damage to the small intestine.

Although celiac disease affects children and adults in all parts of the world, the disease is more common in Caucasians and more often diagnosed in females. You are more likely to develop celiac disease if someone in your family has the disease. Celiac disease also is more common among people with certain other conditions, such as Down syndrome, Turner syndrome and type 1 diabetes.

Long-term complications of celiac disease include malnutrition, a condition in which you don’t get enough vitamins, minerals, and other nutrients you need to be healthy; accelerated osteoporosis or bone softening; nervous system problems; and problems related to reproduction. Rare complications can include intestinal cancer, such as lymphoma, a cancer of part of the immune system called the lymph system that involves the gut. Certain liver conditions have also been associated with celiac disease.

Children with celiac disease usually have digestive symptoms, and if left untreated, the disease can result in delayed puberty, slowed growth and damage to the enamel of permanent teeth, among other problems. Adults are more likely to have diverse symptoms such as anemia, headaches, fatigue, and others.

Diagnosis and Treatment
When we suspect celiac disease, we run a blood test looking for specific antibodies. To confirm the diagnosis, we also perform an upper endoscopy to visually inspect the lining of the upper portion of the small intestine (duodenum) and to obtain biopsies. The duodenum is where nutrient absorption occurs when you eat, and it’s particularly important in the absorption of iron.

Once we confirm a patient has celiac disease, the best course of treatment is a gluten-free diet, which allows the intestine to heal and begin to absorb nutrients better. Patients must be vigilant and need to carefully read all labels for products to be consumed or used on hair and body.

In our office, we are diligent about sharing information with patients regarding how to identify and locate products that are gluten-free, even to knowing which local restaurants offer reliably gluten-free options. These options are becoming more available, which allows celiac patients to enjoy social meals and outings with friends and family.

For celiac patients, strict adherence to a gluten free diet is rewarded in the vast majority of people with improved health. Patients tell me they didn’t realize how badly they felt before, until they have been gluten-free and nutrient absorption improves.

For more information about celiac disease, please call 941-483-5730.

Katie R. Agnello, M.D., with Florida Digestive Health Specialists in Venice, is board-certified in gastroenterology and internal medicine. She is affiliated with Venice Regional Bayfront Health hospital.

Information from the National Institute of Diabetes and Digestive and Kidney Diseases, part of the National Institutes of Health, was used in this report.

Call 941-483-5730 or visit

Related Articles

Back to top button