Should people with the celiac disease gene avoid gluten even if they have no symptoms of gluten intolerance?

About 30 percent of the American population has the gene associated with celiac disease. According to the National Institutes of Health, three million Americans actually have celiac disease.

Possessing the gene for celiac disease doesn’t mean you’ll necessarily develop this autoimmune condition.

In fact, only 1 to 2 percent of the population will develop CD, says Pam Cureton, RD, LDN, Center for Celiac Research, Growth and Nutrition Clinic in Baltimore.

Having the gene for celiac disease means that the person is predisposed to developing the condition, which can affect people in so many different ways; is one of the most misdiagnosed illnesses; and can cause serious complications such as small-intestine damage, brittle bones and other fall-out from micronutrient and macronutrient malabsorption.

So how does a person learn he or she has the gene for celiac disease? It’s not discovered by accident.

The gene has been identified, for sure; it’s just a matter of requesting the genetic test for it.

Sometimes a person will request this test because a family member has been diagnosed with celiac disease.

Another motive for getting the test is if the individual either has a confirmed, or a suspected, sensitivity to a certain type of food.

Out of curiosity, they then request a full-spectrum analysis for food sensitivity, which may include testing for the presence of the celiac disease gene. The test then reveals that they have this gene.

Should this person, then, commit to a gluten-free diet for the remainder of his or her life, simply based on the presence of a gene, even if they have no symptoms whatsoever of celiac disease?

It doesn’t seem logical to avoid gluten like the plague, just to prevent getting an illness that they have only a 1-2 percent chance of developing.

Should such a person even just cut back on gluten? Cureton explains, “The quantity and timing of gluten introduction can contribute to the development of CD if introduced before four months of age.

“At this time, however, we do not recommend that anyone with just the genetic compatibility for celiac disease remove gluten from the diet.”

However, suppose someone not only has the gene associated with celiac disease, but he or she tests positive for an immune reaction to gluten (elevated antibodies), yet still has no symptoms or perceived ailments.

Cureton explains, “If antibodies are positive, a person should have an endoscopy to see if there is intestinal damage. This damage can be there without symptoms.

“If the damage continues, the ‘symptoms’ could be a secondary autoimmune disease that will take on a life of its own, separate from CD, treated or not.

“We have seen many people that did not have symptoms but did have a positive EGD in our clinic.”

People with diagnosed CD are committed to avoiding gluten 100 percent.

This means avoiding any foods that may have come in contact with gluten-containing foods, such as fruit that was sliced on an unwashed cutting board that was previously used for slicing bread – which contains gluten.

They must avoid, for example, a food item that was cut with a knife that has a few crumbs on it from cutting the bread. It’s all or nothing.

Even the most minute ingestion of gluten (which is found in tons of processed foods) can set off symptoms of celiac disease in the diagnosed patient.

Untreated CD (treatment is lifelong total avoidance of gluten) over time damages the small intestines, severely impairing their ability to absorb vital nutrients.

So though the person is eating, he essentially becomes very malnourished and sickly. The illness raises the risk of small-intestine cancer and lymphoma.

A person with CD cannot digest gluten, a protein found in wheat, barley and rye; the body “thinks” that the gluten is a foreign invader and stages an attack against it; over time, this over-reactive immune response damages the body.

Symptoms of celiac disease include: unexplained weight loss, fatigue, diarrhea, bone pain and abdominal bloating.

The takeaway message, then, is that if you’ve learned you have the gene for celiac disease, but are otherwise healthy and symptom free, then you can continue to enjoy foods with gluten.

However, if you begin developing unexplained symptoms that elude your doctor, request being tested for celiac disease (a simple blood test is the first step).

Lorra Garrick has been covering medical, fitness and cybersecurity topics for many years, having written thousands of articles for print magazines and websites, including as a ghostwriter. She’s also a former ACE-certified personal trainer.  
Top image: Shutterstock/ Mia Stern