Here’s Why Your Next Checkup Should Include Celiac Testing

With the gluten-free diet becoming more and more visible in restaurants and on store shelves, and up to a third of Americans trying the diet whether they have a medical need or not, it isn’t surprising that medical organizations are debating whether or not doctors should incorporate routine screening for celiac disease into patients’ yearly checkups.

For now, the answer is “no.” Earlier this week, the U.S. Preventive Services Task Force issued a draft recommendation concluding that more research is needed on the potential pros and cons of routine celiac screening before the organization can take a position one way or the other.

While the decision is understandable, it’s overly cautious and ignores the difficulties many people with celiac have had in trying to obtain a diagnosis.

Why Accurate Diagnosis of Celiac Is Incredibly Important

The truth is that celiac is woefully underdiagnosed. An estimated one in 133 people suffer from the illness, making it rare but not exactly uncommon — that’s three million people in the U.S. alone. However, researchers also believe that up to 83 percentáof Americans with celiac are undiagnosed, or have been misdiagnosed with other gastrointestinal conditions — and that’s a major problem.

When untreated, celiac disease can cause a host of short- and long-term complications. For many, the only obvious effect would be digestive discomfort, a condition that many people may overlook as harmless and not even report to their doctors, or seemingly unrelated issues like fatigue or irregular periods, which a doctor wouldn’t necessarily connect to celiac.

However, if the disease is untreated for long enough, the damage to the digestive system can actually cause malnutrition, which in turn raises the risk of osteoporosis, anemia and serious vitamin deficiencies. People with untreated celiac are even at greater risk of developing other autoimmune conditions and several forms of intestinal cancer, which can be deadly.

Unfortunately, the average celiac patient suffers from symptoms anywhere from 6-10 years before finally receiving a diagnosis — a length of time which dramatically increases the possibility of permanent damage to the body. By the time many people actually know what’s wrong, their life may be altered forever.

And the worst part is that there’s absolutely no reason for this delay. All it takes is a simple blood test for anti-gluten antibodies to screen for potential celiac disease. At your yearly physical, you probably already have your blood drawn to test for conditions like diabetes or thyroid disorders. Most patients probably won’t even notice one more test added to the mix.

If a patient tests positive, they can then be referred to a gastroenterologist for a small intestine biopsy to confirm the diagnosis. If the blood test is negative — and for most people, it will be — there’s absolutely no need to do anything else.

Because celiac can develop at any time in people who carry the genes for the disease, testing once a year, or even every few years, could help people monitor changes to their health. As genetic testing becomes more readily available and affordable, it might be possible to target these routine screenings even more and only administer them to those patients with the highest risk. It can also help catch the occasional rare, but potentially deadly case of “silent” celiac disease, which has no symptoms but still puts the sufferer at an elevated risk of cancer.

Why Is Celiac So Underdiagnosed?

There are a few reasons why the rate of accurate diagnosis for the disease is so low, but there are two major contributing factors I’ve learned from my personal experience:

  1. Despite its prevalence, many primary care doctors simply aren’t educated about celiac, and believe it to be rarer than it actually is, or they aren’t familiar with the testing necessary to diagnose it. Even well-meaning physicians may not be familiar with the wide range of symptoms that celiac can present and may not think to test for it.
  2. People who have experienced celiac for years, or whose symptoms have developed gradually over time, may think that their symptoms are “normal” and not seek help until they are in the advanced stages of the disease. When is the last time you thought to ask for a blood test to investigate the cause of a bout of heartburn?

In my own life, both of these factors kept me from realizing that gluten was hurting me for over a decade. Until about six years ago, like many people, I had never heard of celiac. I had occasionally complained about my digestive issues to doctors, and received a prescription for antacids which helped a bit but didn’t completely resolve my symptoms. I accepted that I had a “sensitive stomach” and stopped bringing it up to my doctors. I thought the way I was feeling was normal.

Apparently, my doctors thought so too, because none of them seemed concerned when I mentioned my “sensitive stomach” over the years. By the time my symptoms became really serious and I realized something was wrong, I was confronted with doctors who didn’t understand celiac testing and how it differs from testing for regular food allergies. To cut a long story short, I was advised to cut gluten from my diet and then pursue celiac testing down the road if it made me feel better.

What I didn’t realize is that celiac testing can only be done if a patient has been actively consuming large amounts of gluten for weeks or months before the test. The medical advice from my doctors, ironically, helped me feel well again for the first time in years, while also sabotaging my ability to ever get an accurate diagnosis.

Given the severity of my symptoms, and the fact that the disease is hereditary and I have a blood relative who has received a formal diagnosis, I feel comfortable assuming I probably have it as well. My doctors have advised me that I should probably continue to avoid gluten. But a strict gluten-free diet is expensive and inconvenient, and this might not be enough assurance for someone else in my situation.

The reason I share my story is that it’s an incredibly common one. I have spoken to people who suffered for decades, drifting from specialist to specialist, before a doctor suggested this simple blood test — which, naturally, they had never heard of. I have spoken to people who requested a celiac test after reading about the disease on the internet, only to be called hypochondriacs. And I have spoken to many other people whose doctors offered well-meaning advice, ignorant of the current research or recommendations on screening for the disease.

The Case for Routine Celiac Testing

Simply put: There is no reason anyone should experience this kind of prolonged pain and discomfort when such a simple test is easily available. Routine celiac testing would solve both of the problems I discussed previously. Primary care doctors wouldn’t need to know the complexities of the condition in order to screen for it and make appropriate referrals. Patients with minor digestive complaints who don’t realize it could be a sign of something serious could receive treatment before the disease progresses to an advanced state.

While the USPSTF is understandably concerned about the potential for false positives during routine screening, the risk of serious health complications for celiac patients who go undiagnosed is higher.

I hope that the organization takes the time to speak with actual celiac sufferers and listens to the horror stories so many people suffering from gluten intolerance have experienced. Maybe if the task force understands what a challenge so many people have trying to be referred for celiac testing, they’ll decide to change course and recommend it more frequently.

Photo Credit: Thinkstock

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