How Is Celiac Disease Diagnosed?

Doctor handing paperwork  How Is Celiac Disease Diagnosed? Photo Celiac disease, an autoimmune disorder in which the body can’t safely process gluten (a protein found in wheat, rye and barley), affects millions of Americans. Approximately 1 in 133 have the disease, and many more are undiagnosed.

There’s an array of symptoms associated with celiac disease, which range from abdominal bloating, weight loss and vomiting to irritability and behavioral issues. Because celiac disease can present so differently in individuals, getting a diagnosis can be difficult. In fact, it takes an average of 6-10 years to get a correct diagnosis once symptoms appear. In those years much damage can be done, which is why an early diagnosis is so important.

Blood test

People experiencing symptoms of celiac disease can get a simple blood test to determine if there are elevated levels of certain antibodies. Because the antibodies being tested are those that are produced when the immune system encounters gluten, individuals must not have eliminated gluten from their diets prior to the test.

The most common test is called the Tissue Transglutaminase Antibodies (tTG-igA) test. It’s also the most accurate, though not 100 percent accurate. In a small percentage of cases, people with celiac disease will test negative for the antibodies, and some people will test positive who do not have it.

Endoscopy

Because the blood test can’t diagnose celiac disease with 100 percent accuracy, if a person’s blood test comes back positive, an upper gastrointestinal endoscopy and biopsy will typically be ordered. During this procedure, which is known as the “gold standard” for diagnosing celiac disease, a patient is put under anesthesia and the doctor removes small samples of the small intestine with an endoscope.

This procedure, which only takes about 15 minutes, allows the doctor to see if there’s any inflammation or damage in the the small intestines, which can confirm a celiac diagnosis. As with the blood test, patients must be eating a diet that contains gluten prior to the procedure.

If the test is negative, the patient still may have a non-celiac gluten sensitivity, which can be tested for with an elimination diet. One other possibility if a patient’s blood tests positive but the biopsy is negative is “potential celiac disease.” This means a patient may be at an increased risk for developing celiac disease down the road and should monitor changes in their symptoms and health. In that case, doctors typically will not advise patients to cut gluten from their diets.

Genetic testing

Because people with a parent, child or sibling with celiac disease are at a greater risk of developing it themselves, families will often be encourage to get a genetic screening. If the screening comes back positive, then those people should undergo blood tests regular and monitor and any symptoms.

Coping

While getting an answer about what is causing symptoms is a relief and celiac disease is manageable, the required lifestyle changes can be overwhelming, particularly for children and young adults. From birthday parties to class treats and snacks after soccer, there will be things that are off limits, and it can feel unfair, frustrating and isolating. Finding a good support group can help. Some may want to seek counseling for help with anxiety or depression related to celiac disease.