Why to Test for Celiac BEFORE Going Gluten-Free

sliced white bread

Maybe your digestion’s been on the rocks lately or you’ve been seeing signs of inflammation, such as joint pain or skin issues. One of the first pieces of advice that a quick Internet search will give you is to go gluten-free. But before you put the bread down, please get tested for celiac disease FIRST.

If you already suspect gluten doesn’t treat your body well, you might wonder why it matters to rule celiac in or out. It matters because, even though they share many of the same symptoms, celiac is an autoimmune disease while non-celiac gluten sensitivity is a food sensitivity. That means they operate differently in the body and can lead to different health outcomes.

Here are 5 reasons to get tested for celiac before giving up gluten:

1. Different Long-Term Risks and Outcomes

Celiac and gluten-sensitivity can feel similar, but celiac is an autoimmune disease with different long-term risks, such as severe nutrient malabsorption. It also carries an increased risk for other autoimmune and inflammatory diseases, and even some cancers. This may be scary-sounding at first, but we can do a lot to prevent these risks as long as we KNOW we have celiac. 

Furthermore, while celiac is undoubtedly a lifelong condition, there is some evidence that some people with non-celiac gluten sensitivity may be able to regain tolerance

Finally, celiac is genetic; if one person in a family has celiac, others are at risk for developing it, too. If you find out you or someone else in your family has it, it’s important that everyone gets screened (including your children, if you have them)!

2. Potentially Different Abilities to Tolerate Trace Amounts of Gluten

Even the tiniest crumb of gluten can set off the autoimmune reaction for celiacs that damages the small intestine. While some people with gluten sensitivity can tolerate trace amounts of gluten, celiacs must be very vigilant about avoiding any chance of cross-contamination (cross-contact).

This can hugely impact the way one lives their life. For example, someone with gluten-sensitivity might be able to eat off a “gluten-free” menu or from a shared kitchen without thinking twice. Celiacs, on the other, will have to ask questions to assess risk of cross-contact.  

3. Celiac is Dramatically Under-Diagnosed

It’s estimated that nearly 80% of celiacs in the U.S. are currently undiagnosed. The popularity of gluten-free diets has skyrocketed in recent years, but awareness about proper celiac disease testing is still lagging.

4. Celiac Symptoms are Diverse and can be Mistaken for Other Conditions

Celiac is often thought of as a condition that only causes digestive symptoms, and while it does commonly wreak havoc on the gut with diarrhea, constipation, gas, bloating, and pain, there are over 300 associated symptoms.

Symptoms that go beyond the gut include…

  • headaches
  • brain fog
  • joint pain
  • skin issues
  • unexplained anemia
  • hair loss
  • fatigue
  • infertility
  • depression and anxiety

Some people may never experience digestive troubles, and a small percentage of celiacs are completely asymptomatic (yet still have the same long-term risks if untreated). Many practitioners are still unaware of how many areas of the body that celiac can affect, and may attribute these symptoms to something else (such as arthritis or IBS). It’s worth it to advocate for yourself and ask for testing. 

5. Testing for Celiac is Extremely Difficult After You’ve Eliminated Gluten

There are countless forums, websites, and practitioners telling everyone to go gluten-free ASAP. Yet, doing so without first testing for celiac puts people in a place where they may never know whether or not they have the autoimmune disease that is celiac. That’s because, in order to get an accurate celiac test, you must have been eating gluten consistently. The longer you’ve been gluten-free, the harder it is to get a valid test.

Bottom Line: Both celiac and non-celiac gluten sensitivity are serious conditions that impact one’s life. However, they operate differently in the body, and everyone deserves to know the root cause of their symptoms to best manage the condition. If you are considering going gluten-free, ask that your doctor first run a celiac test to rule it in or out. 

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