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Torso of light-skinned person with a line drawing of stomach and intestines painted on it, with red, blue, green and yellow dashes of color.
Torso of light-skinned person with a line drawing of stomach and intestines painted on it, with red, blue, green and yellow dashes of color.

Celiac Disease: What to Know When You’re Diagnosed

An Expert Shares Her Advice

Picture it: The last several months, you have been experiencing abdominal pain, diarrhea and bloating. After a visit to your physician and undergoing some testing, they confirm that you have celiac disease.

So, now what?

"The diagnosis of celiac disease can be life-altering," says Nidhi A. Singh, MD, a Northwestern Medicine gastroenterologist. "But it's important to know that the majority of patients can still live a normal and healthy life."

Understanding the Disease

Celiac disease is a long-term digestive and immune disorder. If you have celiac disease, it means that your body cannot process gluten, which is found in grains like wheat, barley and rye.

Not only can the disease damage your intestines, but it can also prevent your body from getting the nutrients it needs. Some other possible consequences of celiac disease include:

Celiac disease is linked to genetics and often runs in families. People who have a first-degree relative (such as a parent, child or sibling) with celiac disease have a one in 10 chance of developing celiac disease, Dr. Singh says. Because of that, you should have a medical and family history that is as complete as possible to share with your care team.

Knowing the Symptoms

Celiac disease can develop at any age after people start consuming gluten. Left untreated, celiac disease can lead to additional serious health problems. Some notable digestive symptoms experienced by adults with the disease include:

  • Bloating
  • Diarrhea
  • Constipation
  • Stools that are loose, greasy, bulky or foul-smelling
  • Abdominal pain

However, these symptoms can apply to other diseases and health issues, and you might have mild symptoms or even no symptoms at all. If you are concerned that you might have celiac disease, talk to your care team. With your symptoms, your medical and family history, as well as exams and tests, they can tell if you have celiac disease.

It is important to understand that celiac disease and gluten intolerance are not the same thing, explains Dr. Singh. Celiac disease involves inflammation and damage to the body in response to gluten. On the other hand, gluten intolerance does not cause damage from ingesting gluten but is a sensitivity that causes some symptoms and discomfort.

Living With the Disease

If you are diagnosed with the disease, Dr. Singh says to let your family members know, if you can. Since the disease is genetic, some of your family members may have the disease even though they may not be experiencing any symptoms.

After a diagnosis, you also might feel self-conscious or ashamed about your diagnosis or symptoms. There are even behavioral and emotional effects that you can experience. Do not fear: Your care team is here to help you manage the disease and feel confident in your health again.

The treatment for celiac disease is a gluten-free diet. While the initial dietary change can be difficult, a gluten-free diet often helps people with celiac disease have better physical and mental health, Dr. Singh explains. Additionally, clinical trials and research studies related to medication options are currently underway.

"Now, more than ever, we have so many resources and dietary options for people with celiac disease," she says. "The future for those with the disease is bright and evolving."

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Nidhi A. Singh, MD
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