In recent years, more Americans have become aware of celiac disease, an auto-immune disorder that can lead to a host of serious health problems.
Yet despite the widespread attention paid to celiac, 83 percent of people who have the disease remain undiagnosed or misdiagnosed, according to the National Foundation for Celiac Awareness (NFCA).
More than 300 signs and symptoms have been associated with celiac disease. In other cases, symptoms are mild or even nonexistent.
Still, that doesn’t mean the disease is not dangerous – and possibly even life-threatening.
How celiac disease harms the body
Celiac disease does its damage by destroying villi, small projections in the small intestine.
“When the villi become damaged, the body is unable to absorb nutrients into the bloodstream,” says Alice Bast, NFCA president and CEO.
Left untreated, celiac disease can lead to malnourishment and a host of other serious health problems. According to the NFCA, these include:
- Type I diabetes
- Multiple sclerosis
- The skin rash dermatitis herpetiformis
- Infertility and miscarriage
- Neurological conditions such as epilepsy and migraines
- Short stature
- Intestinal cancers
Digestive problems are a hallmark of celiac disease, with patients reporting abdominal bloating, diarrhea, pain and gas. Patients also may experience weight loss, muscle cramps and bone and joint pain.
Diagnosing celiac disease
Accurately diagnosing celiac disease can be difficult, Best says.
“The symptoms often mimic those of other diseases,” she says.
Such diseases include:
- Irritable bowel syndrome (IBS)
- Crohn’s disease
- Intestinal infections
- Lactose intolerance
In other cases, patients may have few symptoms, or even none. However, these patients are still at risk for the long-term health consequences of celiac disease, Bast says.
Celiac disease has a genetic component.
“If a person has a biological relative with celiac disease, he or she is at an increased risk for developing it, too,” Bast says.
In fact, celiac disease is present in up to 10 percent of family members of people diagnosed with the condition. As a result, biological relatives of a person with celiac disease should be tested for the condition, Bast says.
A series of blood tests are commonly used to pinpoint celiac disease. Genetic testing also can be helpful. About 95 percent of people with celiac disease have the HLA-DQ2 gene, and the other 5 percent have the HLA-DQ8 gene, according to the NCDF.
You can also visit the NCDF website and look over a disease checklist that can help you determine if you have the symptoms and risk factors associated with celiac.
Some people may have the symptoms of celiac disease, but not the condition itself. This is known as non-celiac gluten sensitivity, and it does not result in the same intestinal damage as celiac disease.
Treating celiac disease
Avoiding gluten – a protein found in wheat, rye and barley – is the only treatment known to be effective for celiac disease, Bast says. Ingestion of gluten can damage the small intestine in people with celiac.
A gluten-free diet should be well-balanced and include food such as fruits and vegetables, whole gluten-free grains, beans, legumes, nuts, eggs, low-fat dairy products, and lean meats and seafood, Bast says.
However, even a well-balanced diet may fall short of providing key nutrients.
Bast says research has found that people who follow a gluten-free diet often are deficient in iron, B6, B12, folate and calcium. The problem tends to be especially likely in women and adolescents.
As a result, Bast says the NFCA recommends that people who are planning to go gluten-free should only do so under the care of a doctor. They also should seek the help of a registered dietitian knowledgeable about celiac disease.