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With such an overwhelming assortment of symptoms, it’s no wonder people are often misdiagnosed before finding out that they have celiac disease or gluten sensitivity. It’s also no wonder so many people go undiagnosed.

A Reader’s Digest article titled “10 Diseases Doctors Miss” cited celiac disease as one of the top-ten misdiagnosed diseases. In all fairness to the medical community, it can be tough to diagnose celiac disease when you think of the myriad symptoms. Headaches, fatigue, infertility, depression – if you go to your doctor for any of those things, it’s unlikely that he or she is going to say, “Hmm, you’re depressed. Let’s test you for celiac disease.” No, it’s far more likely that you’ll be given an antidepressant and sent on your way.

Don’t despair. Plenty of doctors are extremely knowledgeable about these conditions and will do proper testing. If yours isn’t one of those, keep looking until you find one who is. There are even some tests that you can order yourself without a doctor’s intervention.

Looking into tests

It seems like there should be one single test you can take that would definitively determine whether you have gluten sensitivity, celiac disease, or none of the above. But alas, it’s not that simple.

For one thing, there are different types of tests: blood, stool, saliva, and intestinal biopsy. In most cases, one type of test may determine whether you have celiac disease or gluten sensitivity – but most tests don’t discern between the two or test for both. In other words, one test looks for gluten sensitivity but not celiac disease; another looks for celiac disease but not gluten sensitivity. And most people only get one (maybe two) of those tests, so they’re rarely tested for both conditions.

So which test is best? Sounds like a simple question, but there’s no simple answer. The gold standard for testing for celiac disease is a blood test followed by an intestinal biopsy. If both tests are positive, you’re deemed to be confirmed as having celiac disease.

What can be said for certain – or close to it – is that if you test positive for celiac disease, you have celiac disease. That’s because the tests for celiac disease are very specific, highly sensitive, and extremely reliable – especially when they indicate a positive outcome (diagnosis of celiac disease).

However, if the test is negative and your symptoms go away on a gluten-free diet, then you probably have some form of gluten sensitivity.

Unfortunately, there are false negatives and occasional false positives. Some people test negative yet find that they don’t feel right when they eat gluten. Perhaps it was a false negative – or maybe gluten just doesn’t sit right with you.

Bottom line: If it makes you feel bad, don’t eat it!

Sadly, because the protocol for defining and diagnosing gluten sensitivity isn’t well established and there’s some disagreement about definitions of gluten sensitivity in the medical community, patients are often told to ignore inconclusive or confusing test results and to go back to eating their bagels and pizza. If you aren’t sure you can trust your test results, you may want to be tested again at a later time.

Going gluten-free without testing

You may be tempted to skip the testing and jump right into a gluten-free diet. If, for instance, you highly suspect you have celiac disease or gluten sensitivity, it makes sense – going gluten-free can help you start healing the minute you start the diet. Most people begin feeling better right away, some take months to improve, but in the long run, you can look forward to improved health – sometimes dramatically improved.

But – and this is a great big caution flag here – if you plan to be tested, don’t give up your gluten just yet. You have to be eating gluten for an extended length of time before getting the blood test or the intestinal biopsy.

If you don’t eat gluten, or haven’t eaten it for long enough, your body may not produce enough antibodies to show up on the tests, and the results will come back negative for gluten sensitivity or celiac disease – even if you do have the condition.

In other words, the gluten-free diet will “heal” you. Your body will no longer think it has celiac disease or gluten sensitivity. It will stop producing antibodies, and your intestines will heal – so the tests that determine whether you have the conditions will tell you that you don’t, even if you do.

After you’ve gone gluten-free, you can’t be properly tested for celiac disease.

No one knows for sure exactly how much gluten you need to eat to be properly tested, but if you eat the equivalent of one or two pieces of gluten-containing bread a day for at least three months, you should have enough gluten in your system to provide a measurable response.

Keep in mind, though, that you may be causing damage to your body by continuing to eat gluten! It’s a conundrum, for sure!

If you decide to continue to eat gluten before testing and you have severe symptoms, talk with your doctor to decide whether you should continue to eat gluten.