Celiac disease risk factors: who is more likely to get celiac disease

What celiac disease is

Celiac disease is a chronic (long-term) digestive and immune disorder that damages the small intestine. The damage can keep your body from absorbing vitamins, minerals and other nutrients, which can lead to malnutrition and other serious problems (MedlinePlus). It is triggered by eating gluten, a protein found in wheat, barley, rye and other grains (MedlinePlus). It is also called celiac sprue, nontropical sprue and gluten-sensitive enteropathy (NIDDK).

Experts estimate about 2 million people in the United States and about 1 percent of people around the world have celiac disease, and many of them have not been diagnosed (NIDDK).

Who is more likely to get celiac disease

Celiac disease can only occur in people who have certain genes (NIDDK). It affects children and adults in all parts of the world (NIDDK). Combining the NIDDK and MedlinePlus lists, it is more common if you (NIDDK) (MedlinePlus):

• have a family member who has celiac disease
• have a chromosomal disorder such as Down syndrome, Turner syndrome or Williams syndrome
• are White (in the United States it is more common among white Americans than other racial or ethnic groups)
• are female (a diagnosis is more common in females than males)

Genes and gluten

Celiac disease almost always occurs in people who have one of two groups of normal gene variants, called DQ2 and DQ8. People without these variants are very unlikely to get it (NIDDK). About 30 percent of people have DQ2 or DQ8, but only about 3 percent of them develop celiac disease (NIDDK).

Eating gluten triggers the immune reaction behind the disease, but not everyone with DQ2 or DQ8 who eats gluten gets it (NIDDK). NIDDK notes research suggesting that, among children with a genetic predisposition, those who eat more gluten in early childhood may have a greater risk (NIDDK). Researchers are also studying other possible factors, such as more infections in early life, certain digestive tract infections and changes in the gut microbiome (NIDDK). These are under study, not established risk factors.

Health problems that often occur with it

Some people have celiac disease together with other disorders related to the immune system (NIDDK):

• type 1 diabetes
• thyroid diseases, such as Hashimoto's disease and Graves' disease, as well as Addison's disease and primary hyperparathyroidism (see hypothyroidism risk factors and hyperthyroidism risk factors)
• selective immunoglobulin A (IgA) deficiency, where the body makes little or no IgA, an antibody that fights infections
• rheumatic diseases, such as Sjögren's syndrome
• liver diseases, such as autoimmune hepatitis, primary sclerosing cholangitis and primary biliary cholangitis

Symptoms to know

Symptoms vary widely, may come and go, and some people notice none (NIDDK) (MedlinePlus). Digestive symptoms are more common in children than adults and may include (NIDDK) (MedlinePlus):

• bloating, gas and pain in the belly
• chronic diarrhea or loose, greasy, bulky, bad-smelling stools
• constipation
• nausea or vomiting
• lactose intolerance due to damage to the small intestine
• weight loss in adults, or not enough weight gain in children

Other symptoms can include fatigue, depression or anxiety, bone or joint pain, headaches or balance problems, canker sores or a dry mouth, and dermatitis herpetiformis, an itchy, blistering skin rash (NIDDK) (MedlinePlus). In children, poor absorption of nutrients can lead to slowed growth, short height, delayed puberty and damage to the enamel of the permanent teeth (NIDDK).

Providers most often use blood tests and a biopsy of the small intestine, taken during an upper GI endoscopy, to diagnose it (MedlinePlus).

Why treatment matters

Over time, especially if untreated, celiac disease can lead to malnutrition, anemia (especially iron-deficiency anemia), bone loss, nervous system problems and reproductive problems (NIDDK) (MedlinePlus). Rare complications include a cancer of the small intestine (adenocarcinoma), liver damage and non-Hodgkin lymphoma (NIDDK). People with no symptoms can still develop complications if they are not treated (NIDDK).

The treatment is a gluten-free diet for life. In most cases it treats or prevents many of the symptoms and problems and lets the small intestine heal (MedlinePlus).

When IBS-like symptoms are checked, doctors may use an upper GI endoscopy with a biopsy to check for celiac disease (NIDDK). See IBS risk factors.

Common questions

Is celiac disease the same as gluten sensitivity or a wheat allergy?

No. Gluten sensitivity can cause similar symptoms, such as belly pain and tiredness, but it does not damage the small intestine. A wheat allergy is a food allergy with some different symptoms, such as itchy eyes or trouble breathing, and it also does not cause long-term damage to the small intestine (NIDDK) (MedlinePlus).

If I have the DQ2 or DQ8 genes, will I get celiac disease?

Usually not. About 30 percent of people carry DQ2 or DQ8, and only about 3 percent of them develop celiac disease (NIDDK).

Should I be tested if I have no symptoms?

See the celiac disease screening check for what the US Preventive Services Task Force says about testing people without symptoms. If you have symptoms or a close relative with celiac disease, talk with your clinician.

Which risk factors can I change?

Genes, family history, sex and conditions like Down syndrome cannot be changed. Gluten is the trigger, but avoiding it is the treatment for people who have been diagnosed, not a proven way to prevent the disease (NIDDK) (MedlinePlus). Anemia is a common complication; see anemia risk factors.