When Survivor contestant turned talk-show host Elisabeth Hasselbeck went public about her diagnosis of celiac disease and her subsequent gluten-free diet, it did a lot to raise awareness of the disease – one that experts estimate affects one in 100 people.

A gluten-free diet isn’t a guaranteed way to lose weight. A lot of people on a gluten-free diet actually gain weight. Many gluten-free products contain more fat and sugar than other items, she adds, so going gluten free without a diagnosis of celiac disease is not a recommended method for weight loss.

There are also other myths and misconceptions about celiac disease. Many still believe it’s a rare condition that only children can get. Here’s the straight truth about it.

What is celiac disease?
Celiac disease is an inherited digestive disorder where specific proteins found in wheat, barley and rye (known as gluten) damage a person’s small intestine so they cannot properly absorb the nutrients in the food they eat.

Medical experts used to believe it was very rare, affecting approximately one in 10,000 people and mostly occurring in young children. That’s been proven false in recent years, says Case, and it’s now estimated that one in 100 have celiac disease and, what’s worse, only five to 10 per cent of those are actually diagnosed with it.

It can also occur in anyone, at any age. It can be triggered by a viral or gastrointestinal infection, pregnancy, severe stress or surgery.

If left untreated, celiac disease can cause nutritional deficiencies and increase the risk of osteoporosis, intestinal cancers, neurological disorders, infertility, as well as possible development of other autoimmune disorders. It has also been known to occur in combination with Type I diabetes, auto-immune thyroid disease, autoimmune hepatitis, Down’s syndrome and Turner syndrome.

What are the symptoms of celiac disease? There are many, and they can vary widely from individual to individual. They include:

Recurring bloating, gas, or abdominal pain
Chronic diarrhea or constipation or both
Unexplained weight loss or weight gain
Pale, foul-smelling stool
Unexplained anemia
Bone or joint pain
Behavior changes/depression/irritability
Vitamin K Deficiency
Fatigue, weakness or lack of energy
Delayed growth or onset of puberty
Failure to thrive (in infants)
Missed menstrual periods
Infertility (male and female)
Spontaneous miscarriages
Canker sores inside the mouth
Tooth discoloration or loss of enamel

Diagnosis dilemma
If celiac disease is so widespread, why aren’t more people diagnosed with it? It’s for a number of different reasons. One is that physicians were taught that celiac disease was rare and only in children. That meant when a patient came in displaying a number of symptoms of celiac disease, it did not automatically jump to the forefront as a possible condition.

The other problem is that tests to diagnose it are still imperfect. Often, the first test is a blood test, which only detects the more extreme cases of it and not those with less damage to the small intestines. It is also possible to get a false negative response with a blood test.

The second test is a gastrointestinal biopsy, which is a much more definitive diagnosis. However, even that is imperfect. If the test doesn’t take enough samples of the intestines (at least four to six samples), you could end up with a false negative result. It is estimated that 20 percent of these biopsies are done incorrectly.

Finally, for the test to be accurate, the person must still be consuming gluten. If someone has gone on a pre-emptive gluten-free diet, the tests results could come back negative.

If you suspect celiac disease

If you suspect you might have celiac disease, do NOT stop eating gluten. Celiac disease is not something you should ever self-diagnose. If you suspect you have it, go to your doctor and ask to be tested.

Remember that the tests are imperfect. If at first you get a negative result but you still suspect it, try to find a health care practitioner who is familiar with the condition to ensure you get the most accurate test possible.

And if the tests still come back negative, you may have something known as non-celiac gluten sensitivity. That means you still need to avoid gluten, but it will not damage your intestines in the same way as someone with celiac disease. It’s important to know if it’s celiac or not because if someone with celiac doesn’t follow the diet exactly, he or she is at a very high risk of developing complications and other serious diseases.

Finally, if you are diagnosed with celiac, see a dietitian to help you create a gluten-free eating plan.