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Living with Celiac Disease – How to Identify and Manage the Disease

Living with Celiac Disease – How to Identify and Manage the Disease
Samantha Anton, Saint Barnabas Medical Center, an RWJBarnabas Health facility

In recent years, there has been a trend in restaurants and food distributors to offer gluten-free options to customers. This is due, in part, to the growing diagnoses and awareness of celiac disease. Celiac disease is a hereditary autoimmune disorder. For individuals with celiac disease, eating gluten triggers an immune response in their small intestine damaging the intestinal villi, which help with nutrient absorption.


More than two million Americans have been diagnosed with celiac disease, but recent research has shown that a large number of people have gone undiagnosed and the actual number of people with celiac disease could be much larger. With May recognized as Celiac Disease Awareness Month, Michelle Pasia, MPH, RDN, Registered Dietitian from the Kogan Celiac Center at RWJBarnabas Health outlines the ways to identify celiac disease and how to manage the condition as well as the differences between celiac disease and a gluten intolerance.

Celiac Disease – What it is and How to Identify It

“Celiac disease is a lifelong, genetic autoimmune disorder, triggered by gluten, the protein found in grains, wheat, barley and rye,” said Pasia. “When ingested by an individual with celiac disease, this protein triggers an autoimmune inflammatory response in the small intense, causing damage to the absorptive structures called villi.”

When the villi are damaged, their ability to absorb nutrients –vitamins and minerals – is greatly reduced, resulting in compromised nutritional status and increased risk for diseases of almost every organ system.

“One of the reasons celiac disease goes undiagnosed for many people is that the symptoms can vary from person to person,” said Pasia. “Certain people may not have celiac disease until adulthood, at which point they might mistake them for symptoms of an unrelated condition.”

According to Pasia, symptoms of celiac disease may include:

  • Chronic diarrhea or constipation
  • Abdominal pain and / or bloating
  • Abnormal bowel movements
  • Skin rash
  • Discolored teeth
  • Joint paint
  • Failure to thrive or arrested physical growth
  • Delayed weight gain and or growth retardation
  • Numb feeling in legs
  • Fatigue
  • Anemia
  • Osteoporosis
  • Infertility

Pasia also notes that celiac disease can sometimes be asymptomatic, meaning you may not experience physical symptoms. This does not, however, mean that the disease is harmless.

“Left untreated, celiac disease can cause conditions like, osteoporosis, vitamin deficiency, intestinal lymphoma, dental enamel defects, infertility and general malnutrition,” said Pasia.

To test for celiac disease, initially a blood test is ordered to determine if antibodies against gluten are being produced. High levels of antibodies show increased immune reaction and a strong likelihood for celiac disease.

“If the blood test comes back positive, a gastroenterologist will perform an endoscopy and do a small bowel biopsy,” said Pasia.

If you suspect you might be suffering from celiac disease, you should not, however eliminate gluten before you are tested.

“When gluten is eliminated from the diet, the villi heal and the results of a biopsy will not be accurate or reliable,” said Pasia. “We advise individuals to wait until they have been positively diagnosed with celiac disease before going on a gluten free diet.”

Gluten Intolerance vs. Celiac Disease

“Having a gluten intolerance does not cause any physical damage to intestines,” said Pasia. “Gluten intolerance is symptomatic. You may experience gastrointestinal distress, but without the autoimmune or malabsorption results, there is no damage happening.”

In addition, it is not known yet if there is any genetic marker for gluten intolerance, whereas celiac disease is genetic.

“Evidence suggests that those with a first-degree relative, such as parents, siblings and children, with celiac disease have an elevated risk of also having the condition,” said Pasia.

Those with a gluten intolerance may tolerate ingesting small amounts of gluten, and those with celiac disease must adhere to a strict, gluten free diet for the rest of their lives.

“Exposure to even a small amount of gluten will cause damage to the small-intestine for those with celiac disease,” added Pasia.

Managing Celiac Disease

“Celiac disease is a lifelong condition,” said Pasia, “But with proper treatment, it should not stop you from enjoying a long, active lifestyle.”

Following a 100% gluten free diet is the only treatment and will heal the intestines and everything will go back to normal. Grains that are not acceptable on a gluten free diet include: wheat, rye, barley and triticale (a cross between wheat and rye.) and some oats. The most obvious places for these grains are in breads, pastas and baked goods, but processed foods can also contain other hidden sources of gluten. Cross contamination of other grains such as oats and quinoa is also a concern.

There are also many grains and other sources of starch that are acceptable for anyone following a gluten free diet. The most common ones are corn, potatoes, rice and tapioca (sometimes called cassava). Other acceptable grains and sources of starch are amaranth, arrowroot, buckwheat, millet, quinoa, sorghum (sometimes called jowar), sweet potato, taro, teff and yam.

Pasia also notes that individuals with celiac disease must also be wary of cross contamination with cooking surfaces. “You must have separate cooking surfaces like cutting boards, toasters, pots and pans, and ovens for gluten and gluten free foods,” said Pasia.

The Kogan Center at RWJBarnabas Health offers comprehensive education, and support for celiac disease for both adults and children.

“The Center is dedicated to providing expert services that include early assessment, treatment, education and support to improve the health and well being of those who live with celiac disease,” said Pasia. “We have nutritional education programs to break down the process of learning how to eat and live gluten free into easy, manageable steps. Patients meet with registered dietitians at regular intervals and learn how to implement changes that meet dietary guidelines and address lifestyle needs and personal tastes.”

The Center’s monthly support group is another way people can connect and learn from each other.

The Kogan Center is located at the Barnabas Health Ambulatory Care Center, Suite 111, 200 South Orange Avenue in Livingston, New Jersey. For more information about the resources the Center offers for celiac disease, call (973) 322-7272 or visit their website.