In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease. In 1998 I created The Gluten-Free Mall, Your Special Diet Superstore!, and I am the co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.
The traditional approach to diagnosing celiac disease is a three-step process:
Many doctors now feel that step number three is unnecessary, and some feel that even the second biopsy may be unnecessary. Part of the reason for this change in thinking is the development of three useful antibody blood tests: endomysial, reticulin (IgA), and gliadin (IgG and IgA). If the patient has been eating gluten regularly and all three tests come back positive, there is a very high chance that the patient has celiac disease. If all three tests come back negative, then it is very likely that the patient does not have celiac disease. Mixed results, which often occur, are inconclusive.
All of the laboratory tests that can be performed are strongly affected by a gluten-free diet. Tests will return negatives if the individual has been on a gluten-free diet for some time, and there is much debate about the length of time a patient must return to a gluten-laden diet before being tested. It probably depends on many factors: the level of damage that was done before starting a gluten-free diet, the length of time the person has been gluten-free, the amount of healing that has occurred, and the sensitivity of the individual to gluten.
A tentative diagnosis of celiac sprue is usually offered if the patients symptoms clear up after some time on a gluten-free diet. This is often followed by a "challenge" in which one of the offending grains (usually wheat) is eaten to see if the symptoms reoccur. However, this approach is much less desirable than having a firm diagnosis from a combination of antibody tests and one or more biopsies.
Because a gluten-free diet precludes accurate testing, if you suspect celiac disease, it is advisable to have diagnostic tests performed before starting a gluten-free diet.
Some physicians will accept positive antibody tests, one biopsy, and improvement on a gluten-free diet as sufficient for diagnosing celiac disease. Many other doctors prefer to perform a second biopsy, feeling that if it shows normal villi after a period of eating gluten-free then the diagnosis is confirmed. There are still some doctors who prefer the three-step approach mentioned above, though most view this as unnecessary.