Fast Facts: What You Need to Know About Celiac Disease

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Medically reviewed by Ayanna Lewis, M.D.

November is Gluten-Free Diet Awareness Month.

Celiac disease affects an estimated 3 million people in the U.S. — and most of them are women. So what do you need to know, and do, if you think you may be one of them? We reached out to gastroenterologist Ayanna Lewis, M.D., director of IBD at Mount Sinai South Nassau and member of the HealthyWomen Women’s Health Advisory Council, to find out more about this autoimmune condition.

What is celiac disease?

Celiac (pronounced see-lee-ak) disease is a chronic inflammatory disease. It occurs when your immune system reacts to gluten, which is found in wheat, barley and rye.

What happens when someone with celiac disease eats gluten?

If you have celiac disease and you eat gluten, an immune response happens in your small intestine, which can damage its lining. This can cause malabsorption, meaning your body does not get the nutrients it needs.

There’s no cure for celiac disease, but it can be managed by dietary changes.

What are the causes of celiac disease?

Celiac disease runs in families. An estimated 1 in 3 people carry the genes that cause celiac disease, yet only 1 out of 100 of those people will develop it. If you don’t carry two genetic markers for celiac disease (HLA-DQ2 or HLA-DQ), it’s 99% unlikely you will ever have the disease.

Who gets celiac disease?

Anyone of any age can get celiac disease. But celiac disease is more common in white Americans than other racial groups, and as we mentioned above, women are diagnosed more often than men.

What are celiac disease symptoms?

Most of the symptoms of celiac disease are GI-related. These include:

Stomach painDiarrheaA bloated abdomen (“celiac belly”)GasConstipationNauseaVomiting“Celiac poop,” which is watery diarrhea that smells bad

Non-classical celiac disease symptoms can also happen too. These include:

TirednessA skin rash that itches and gets blisteryUlcers in your mouthHeadaches

What’s the difference between celiac disease and gluten sensitivity?

Gluten intolerance can overlap with celiac disease symptoms. For example, if you are sensitive to gluten, you may experience GI symptoms like bloating, constipation, diarrhea and stomach cramps. It may be that you can eat a certain amount of gluten before you experience symptoms. But a person with celiac disease will have a reaction after eating just one crumb of a food containing gluten. Also, if you just have a gluten sensitivity, your symptoms will be tied to the amount of gluten you ate and how long ago you ate it. For someone with celiac disease, the symptoms can last for days, and inflammation can be seen on blood tests after that for weeks.

Are there any medical complications associated with celiac disease?

Many patients wonder: Can celiac disease kill you? The answer is that it can’t kill you directly, but it can lead to a number of serious health problems if left undiagnosed and untreated, including non-Hodgkin lymphoma.

Not absorbing enough nutrients, or being malnourished, is a big risk if celiac disease is severe. If your body does not get the nutrition it needs to keep you healthy, you can suffer from complications such as low red blood cells (called anemia), softening of your bones, lowered spleen function, joint pain and nervous system problems like numbness and tingling in your body.

Can celiac disease cause blood in your stool? 

Having blood in the stool is not a common symptom of celiac disease. If you have blood in your stool, make sure to tell your healthcare provider right away, so they can determine the cause.

How is celiac disease diagnosed?

Diagnosing celiac disease begins with blood tests. If your HCP sees signs of celiac in the blood tests, they will often order an endoscopy, which is a procedure where a small camera is used to allow your HCP to view your small intestine and take a tissue sample to see if it’s damaged.

How is celiac disease treated?

If you’re diagnosed with celiac disease, the only treatment is a lifelong gluten-free diet. This means you will need to be careful when choosing food to prepare on a daily basis and when dining out. The great news: There are many delicious, healthy foods you can still eat. Plus, you’ll feel relief once gluten is out of your life for good. That’s a win-win situation.