How Long Does It Take to Diagnose Celiac Disease?

Celiac.com 05/23/2019 - One of the most common questions we see about celiac disease diagnosis is: How long does it take, on average for a person to be diagnosed with celiac disease from the time they first notice symptoms? The answer can vary from person to person, and from doctor to doctor. It can depend on what resources your doctor has to test you for celiac antibodies. It can vary by location and country.

One doctors start looking for celiac disease, it doesn't usually take them very long. In theory, a diagnosis of celiac disease is fairly straightforward. The best case would be you notice symptoms, go see a doctor, receive a quick antibody screen, test positive for celiac antibodies, receive a biopsy and get a confirmation.

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In reality, it almost never works like that. Diagnosis of celiac disease, like many diseases, can depend on numerous factors, including severity of symptoms, the speed with which patients notice the symptoms and seek medical attention, and the process of determining the cause of symptoms to testing for antibodies to biopsy confirmation.

Because these factors can vary from person to person, the time from symptom onset to celiac disease diagnosis will likely be different for each person. For far too many people, though, celiac disease diagnosis is slow, and can take years, depending on the above factors. 

Both Daniel Leffler, MD, MS, at The Celiac Center at Beth Israel Deaconness Medical Center, and the Celiac Disease Foundation say that patients face "an average delay of 6-10 years for an accurate celiac disease diagnosis."

So six to ten years is one answer, it's the answer for many people. But it's not the complete answer, it doesn't have to be the answer for everyone.

The article goes on to say that "In Italy, where celiac disease is common, all children are screened by age 6...and Italians of any age are tested for the disease as soon as they show symptoms. As a result of this vigilance, the time between when symptoms begin and the disease is diagnosed is usually only 2 to 3 weeks."

So, again, the length of time it takes to get a diagnosis is a combination of vigilance and testing practices. It can take years, but it can also take weeks or months. If you think you or a loved one may have celiac disease, do your best to note your symptoms, and to get screened by a physician. It's true that screening won't catch all cases, but it will catch most.

Moreover, positive tests for anti-gliadin antibodies is a solid argument for endoscopy and biopsy. There's no reason that people with symptoms and some awareness of celiac testing should. The more people begin to press for screening based on symptoms, the more that 6-10 year number will shrink.

Remember, the faster you get screened, the faster you can get diagnosed and begin to heal.