Why You Should Follow up on Your Celiac Diagnosis

Lab technician with blood samples and medical chart
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It's a story you hear all too frequently: Someone is diagnosed with celiac disease, handed some pamphlets about how to go gluten-free, and sent on their way without much mention of the possible need for follow-up doctor visits or testing.

There's a certain logic to this, since the only current treatment for celiac disease is the gluten-free diet, (and that doesn't require a prescription). In addition, many people (but not all) feel better pretty quickly once they start eating gluten-free, so they feel as if their problem has been corrected.

But experts in the field still recommend those with celiac disease obtain follow-up care from their physicians, both to check for any problems with continuing symptoms, and because celiac is strongly linked to many other autoimmune conditions. Here's a rundown of what those experts recommend.

Tests for When You're First Diagnosed With Celiac Disease

When you're initially diagnosed with celiac disease, your doctor may recommend several tests to see how your condition has affected your body.

For example, she may recommend that you be tested for nutritional deficiencies, which are common because the damage to your intestinal lining means you can't absorb the nutrients in your foods. This could involve a series of blood tests for nutrients such as vitamin B-12, folate, and vitamin D. 

She may also recommend that you be checked for anemia, if you haven't been tested already as part of your diagnosis (most people will have been tested for anemia before their diagnosis). It's common to see anemia with celiac disease, and it may be adding to any feelings of fatigue you're experiencing. Oftentimes, anemia improves or disappears once you begin eating gluten-free and your intestinal lining begins to heal.

Finally, your doctor may ask you to undergo testing to see if celiac disease has affected your bone strength and thickness. Unfortunately, the nutritional deficiencies common with celiac can lead to osteoporosis or osteopenia, conditions in which your bones are less dense and weaker than normal. To see if you have this problem, you'll need what's called a DEXA scan, which is a type of x-ray.

Don't be alarmed at all this testing—it's possible you may not have any of these problems. Even if the tests do uncover an issue, it should begin to resolve once you go gluten-free. In addition, your doctor may prescribe additional treatments, such as nutritional supplements for any vitamin or mineral deficiencies, or medication to treat low bone density.

Meeting With an Expert Gluten-Free Dietitian

The gluten-free diet is tricky to follow, with a very steep learning curve. People often make mistakes in their first months gluten-free, and unfortunately, often pay for those mistakes with nasty symptoms of a glutening

Some people figure out the intricacies of the diet all on their own. But there's no question that for others, the help of a nutritional expert in the gluten-free diet would save them from mishaps and possibly help them to heal more quickly.

Unfortunately, your doctor probably can't fill this nutritional expert role for you. In fact, the American College of Gastroenterology (ACG) acknowledges that most doctors don't know enough about the gluten-free diet to adequately counsel people on it. That's why the group recommends that everyone who's been diagnosed with celiac disease be referred to a registered dietitian who is knowledgeable about celiac disease. 

A dietitian can help identify any potential nutritional deficiencies in your own normal diet, and can help teach you about where gluten can hide in that diet. A dietitian also can assist you in crafting the healthiest possible gluten-free diet, with special attention to nutrients such as fiber, folate, and calcium, which often are lacking.

Not all dietitians are experts in the gluten-free diet. Your doctor may recommend someone to see, or you may have to do some searching on your own.

Long-Term Follow-Up Care for Celiac

Although celiac disease experts recommend regular follow-up visits for those who have been diagnosed with celiac disease, not everyone follows these recommendations. One study that included 113 people showed that only a little more than one-third followed ACG guidelines for follow-up care.

So what is recommended as far as follow-up care goes for people with celiac disease?

The ACG guidelines call for regular monitoring by a doctor who's knowledgeable about celiac disease. This may—or may not—be your primary care doctor. It's more likely to be your gastroenterologist.

The guidelines don't specify how often you should see your doctor, but other experts recommend seeing the doctor who diagnosed you with celiac after you've been gluten-free about three to six months, and then again after about a year. This will give you a chance to talk to your doctor about how you're feeling, and whether you've got any lingering symptoms.

If you're struggling with the gluten-free diet, your doctor may recommend that you see a dietitian. This can be helpful even if you saw one when you first were diagnosed—a skilled dietitian may be able to pinpoint places where you're inadvertently getting some gluten in your diet.

Some doctors like to use celiac disease blood tests to monitor how gluten-free you are. Unfortunately, these tests likely will only show if you're eating large quantities of gluten-containing foods; they're not sensitive enough to determine whether your body is reacting to small amounts of gluten cross-contamination at home, for example.

Your doctor might also want to run other, more general blood tests, which can provide clues to your overall level of health.

Occasionally, your doctor might advise you to undergo a repeat endoscopy and biopsy in order to see how well your intestinal lining has healed. This recommendation is more likely if you report continuing symptoms, even though you're carefully following the gluten-free diet. An endoscopy can allow your doctor to look for other possible medical issues that might be contributing to your symptoms.

Watching for Related Conditions

Celiac disease is what's called an autoimmune disease, which means it involves an attack on one part of your own body (in this case, your small intestinal lining) by your own immune system.

When you have celiac disease, you're also at higher risk for several other autoimmune conditions, including thyroid disease, type 1 diabetes, and a form of hair loss called alopecia areata.

Although researchers haven't proven strong links between celiac and some additional autoimmune conditions, including multiple sclerosis, there's no doubt that having one autoimmune condition raises your risk for developing other autoimmune conditions. Therefore, it's a good idea to talk with your doctor about your general risk for other autoimmune diseases, and to report any symptoms you might be experiencing.

The Bottom Line

Most people who are diagnosed with celiac disease feel better once they've gone gluten-free. Regular visits to your doctor, plus any follow-up testing she recommends, can play an important role in making sure you keep your good level of health, and deal with any bumps along the road as they arise.

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