June 7, 2022

Gluten intolerance or celiac disease: How to know the difference

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A gluten-free diet is not a weight-loss solution. Here’s what it treats and how.

Today, “gluten free” is everywhere you turn. Even grocery chains have huge gluten-free sections. And while you’ve heard about the gluten-free diet, how much do you know about celiac disease, a gluten-related disorder which affects 1 in 133 Americans, or 1 percent of the population? What’s the difference between gluten intolerance and celiac disease?

Celiac disease is a serious autoimmune condition that is genetic (someone inherits it from their parents) and chronic (it lasts for an indefinite period of time). While “celiac disease” and “gluten intolerance” are often used interchangeably, they are not the same thing.

“The gluten-free diet is not a weight-loss solution,” said Dawn Adams, M.D., M.S., director of the Celiac Disease Clinic at the Vanderbilt Digestive Disease Center. “A gluten-free diet in a patient with celiac disease is a treatment for a serious medical condition. When you avoid foods that contain wheat, your body will miss out on important nutrients found in these products. It is important that you find other ways to incorporate these nutrients.”

What is celiac disease?

Gluten is a protein found in wheat, rye and barley.

When people with celiac disease consume foods containing gluten, their immune systems overreact. The overreaction damages tiny, hair-like projections (villi) that line the small intestine. Normally the villi make it possible for the intestine to absorb nutrients from food. But if the villi are damaged, you can’t absorb the nutrients you need, even if you eat plenty of nutritious food. Vitamins, minerals and other nutrients pass through the digestive system without being absorbed. Poor absorption of nutrients can have many serious side effects, including anemia, osteoporosis and delayed growth in children.

Symptoms of celiac disease vary by individual and include:

  • Abdominal pain and cramping
  • Belly swelling or bloating
  • Gas
  • Diarrhea, constipation or both
  • Light colored, foul-smelling or fatty stool
  • Iron deficiency
  • Fatigue
  • Mood changes, irritability and depression
  • Weight loss
  • Skin irritation or rashes
  • Joint pain
  • Canker sores
  • Unexplained elevated liver tests
  • Migraine headaches
  • Concentration and memory problems
  • Infertility
  • Slowed growth

It’s difficult to tell celiac disease apart from other illnesses that cause similar symptoms. This can make it difficult to diagnose celiac disease. Many patients with celiac disease may not experience severe symptoms, and they may not know they have this condition. Medical researchers believe that about 70% to 80% of all cases remain undiagnosed.

Non-celiac gluten sensitivity (NCGS) — sometimes called non-celiac wheat sensitivity (NCWS) — is a condition in people who feel symptoms when they eat gluten or wheat, but do not have damage to the small intestine, or abnormal blood tests. People also avoid gluten for other reasons, some of which may not be supported by medical evidence. It’s estimated that up to 7 percent of the U.S. population, about 18 million people, avoid eating gluten for some reason. 

How do I know if I have gluten intolerance or celiac disease?

When a patient is having symptoms of celiac disease, a simple blood test is the first step toward receiving a diagnosis.

If the blood test is positive, the doctor will take a biopsy during an upper endoscopy. This is done to see inside the stomach and duodenum (the first part of the small intestine). For the test, an endoscope is used. This is a thin, flexible tube with a tiny camera on the end. It’s inserted through he mouth and down into the stomach and duodenum. Tools are passed through the endoscope to take a biopsy (remove tiny tissue samples). A pathologist looks at these tissue samples under a microscope. This is to check the villi for damage. Both these tests (blood test and biopsy) must be done while you are still eating food with gluten. Going gluten-free before these tests are completed can make diagnosis difficult.

There are no laboratory tests for non-celiac gluten sensitivity. Your doctor should rule out celiac disease and a wheat allergy. An elimination diet is often used to see whether your health improves by removing gluten from your diet. It may be possible for some people with gluten intolerance to tolerate a low-gluten diet instead of a gluten-free diet.

The only treatment for celiac disease is a gluten-free diet. There are many studies in the U.S. studying drugs to treat celiac disease. If you have celiac disease and are interested in taking part in clinical trials, contact your nearest celiac disease center. 

What happens after I start a gluten-free diet?

“Patients with celiac disease need long-term management,” explained Adams. “We follow them indefinitely. Once they’ve been diagnosed with celiac disease, we provide nutritional counseling and education to help them adjust to a gluten-free lifestyle. Then we retest them at regular intervals to make sure the small intestine is healing and that they are maintaining good micronutrient levels and screen for other associated conditions.”

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If you think you may have celiac disease or a gluten intolerance, the Vanderbilt Celiac Disease Clinic may be able to help. The clinic sees patients with new, existing or difficult diagnoses of celiac disease. The clinic is also active in clinical trials of medications that could treat this condition.

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Dawn Adams, M.D.

Dawn M. Adams, M.D., M.S., is assistant professor of gastroenterology, hepatology and nutrition at Vanderbilt University School of Medicine and director of the Vanderbilt Celiac Disease Clinic. Her areas of interest include celiac disease, inflammatory bowel disease, and nutritional deficiencies and weight loss.