After Your Celiac Disease Diagnosis: Tests You'll Need on a Regular Basis

What the Experts Say about Follow-Up Tests for Celiac Disease Patients

People with celiac disease who've been on a gluten-free diet for a while often ask me, "What kind of follow-up tests should my doctor be doing on me?" I wish I could tell you that doctors all agree about what follow-up tests people with celiac disease need, but I can’t. Different celiac disease experts have different opinions on what tests are necessary, and when.

One thing they all agree on: Follow-up testing is important to ensure that your celiac disease antibody levels are returning to normal and your small intestine is healing. The tests also show whether you’re successfully managing to avoid gluten, even hidden gluten.

Here’s what The Celiac Disease Center at Columbia University says:

It's never too late to begin follow up testing and to learn from the results. Food manufacturing practices change often, and even the most diligent celiac cannot keep up with all the changes.

Columbia also advises: some celiacs find that current health problems may be related to celiac disease, such as anemia or bone density. The reverse is also true-some find that current health problems they've attributed to celiac disease aren't related, because their antibody levels indicate that celiac disease isn't active. In either case, the patient and physician have received valuable information.

When Should You Have Another Blood Test?

According to the University of Chicago Celiac Disease Center, new celiacs should receive follow-up blood tests twice in the first year after their diagnosis: The first time between 3 to 6 months after their diagnosis, and then again after a full year of being gluten free. After that, blood tests should be done once a year.

Which Blood Tests are Usually Ordered?

Guidelines from the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition, an organization of doctors who practice in those specialties, say that anti-tissue transglutaminase (tTG-IgA) testing (to look for antibodies to tissue transglutaminase) should be used for follow-up care.

The University of Chicago, however, points out that the tTG test can sometimes be inaccurate in people with other autoimmune disorders, such as type 1 diabetes or thyroid disease. Therefore, the University of Chicago recommends that follow-up testing include measurement of two types of anti-gliadin antibodies, AGA-IgA and AGA-IgG.

Don’t forget: Blood tests tell you only whether you still have antibodies to gliadin or tTG. No common tests detect gluten in the blood.

Will You Need Another Biopsy?

Some centers believe that if your antibody levels have been normal for an extended period, your intestines have probably healed and you don't need a biopsy. Others believe that repeat biopsies should also be done at some point. Columbia University, for example, says, “Patients with celiac disease should have at least one follow-up biopsy to confirm their response to the diet and the normalization of the biopsy sample.”

Columbia University points out, and most centers would probably agree, that patients who don’t respond to the gluten-free diet, or who have confusing symptoms, may need more biopsies.

What Else?

Good follow-up after a celiac disease diagnosis does not only mean repeating the original tests. For example, the Celiac Disease Center at Columbia University recommends that newly diagnosed celiacs should have bone density tests, because osteoporosis (low bone density) and osteopenia (lower than normal mass, but not bad enough to be classified as osteoporosis) are common complications of celiac disease. It’s also important to measure iron, folic acid, calcium and certain vitamins because levels are low in many people with celiac disease.

The Columbia University doctors say, "Certain vitamins and minerals may need to be administered, but the patient should be under a physician's guidance as to how much should be taken and for how long. Consultation with a dietitian experienced with the gluten-free diet is recommended. Many patients, especially the elderly, require a Pneumovax vaccination because hyposplenism and a resultant increased risk of pneumococcal infection is common."

Speaking of vaccines, considerable research on celiac disease and hepatitis B vaccination has shown that celiacs often don't have an adequate response to the vaccine. If you were vaccinated against hepatitis B, you should mention this to your doctor. (For more information, see Celiac Disease and the Hepatitis B Vaccine.)