Just a Gut Ache, or Celiac Disease?

As diagnoses rise and skeptics cast doubts, science confirms problem

Gluten-free foods were relatively unheard of in the recent past. “Gluten free” wasn’t included in the descriptions of menu items, nor did those words consume entire sections of grocery stores.

We’ve come a long way in a very short time.

While some believe the rise in gluten-free products is more of a gimmick than a dietary necessity, try telling that to people like Jessica Jennings.

Jennings, of Freehold, New Jersey, has been eating gluten-free for a long time, well before being “gluten-free” became all the rage. After suffering from stomach ailments for most of her life, Jennings learned 10 years ago she’s gluten intolerant. Her diagnosis followed years of discomfort and the inability of gastroenterologists to decipher the cause of her symptoms.

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Nausea, dizziness, stomach pain, vomiting and diarrhea were just some of the painful side effects Jennings experienced after ingesting gluten, the proteins found in wheat, rye and barley.

Only after her primary doctor finally recommended the exclusion diet did they realize the problem.

Celiac disease is a hereditary autoimmune disease in which the body attacks the small intestine when it comes in contact with gluten. During the inflammatory attacks, the villi in the small intestine become damaged and cannot absorb nutrients correctly.

The Celiac Disease Foundation, a nonprofit corporation that promotes research and education on celiac disease, reports that 1 percent of the world suffers from the digestive disorder and that diagnoses have been doubling every 15 years.

“There are approximately 3 million Americans who suffer from celiac disease, yet 2.5 million remain undiagnosed.”

That may sound like only a few people, but millions are affected.

When scientists decided to study why America had far fewer cases of celiac disease than other countries in the 1950s, it was only then that they realized celiac disease was more extensive than originally thought — it was just underdiagnosed.

Even now, with all of the awareness surrounding celiac disease, the CDF reports only 17 percent of celiac disease sufferers are appropriately diagnosed.

“Diagnosis of celiac disease has certainly increased over the past few years, but the diagnosis rate is still shamefully low,” Talia Hassid, communications manager at the CDF, told LifeZette. “There are approximately 3 million Americans who suffer from celiac disease, yet 2.5 million remain undiagnosed.”

Has the uptick in people claiming they have celiac disease caused by the creation of a diagnostic test, or is it something else?

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Due to a lack of research from the past, scientists are not positive.

One study conducted by the Mayo Clinic found that celiac disease is four times more frequent now than it was 50 years ago; it reached this conclusion after testing for celiac disease in archived blood samples and matching those results against blood samples from today. The study confirms doctors are not only able to better diagnose celiac disease presently, but the disease is actually more pervasive.

“Celiac disease is unusual, but it’s no longer rare,” Dr. Joseph Murray, the lead researcher on the study, said in a statement. “Something has changed in our environment to make it much more common.”

Among the theories as to why celiac disease has surged, Hassid said, are our hypercleanliness, the processed foods we eat, and our environment. Scientists have also suggested that alterations in the quantity or quality of gluten or modifications in our gut microbiome are to blame. No theory has been tested sufficiently to offer any real conclusions.

Alongside the rise in celiac disease comes a recent hike in gluten intolerance, officially diagnosed as nonceliac gluten sensitivity. While a blood test will show if someone has celiac disease (certain antibody levels will be raised), a blood test will not confirm gluten sensitivity.

The only way to verify a nonceliac gluten sensitivity is to receive a negative test result for celiac disease but still have symptoms after eating gluten.

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Though more of her clients have claimed they feel better going gluten-free in recent years, Evette Richardson, a California registered dietician and nutritionist who specializes in gastrointestinal disorders, said she believes only a fraction of people who claim to be gluten sensitive actually are.

“Results of a study published in December 2015 in the journal Digestion showed that when symptoms were assessed in a controlled setting, 86 percent of the study participants claiming to be gluten sensitive were actually able to tolerate gluten,” Richardson said.

Still, very few of Richardson’s clients ask to go on a gluten-free diet if they are asymptomatic, and she does not recommend a diet sans gluten to her patients if they are not intolerant.

“Gluten-free diets are often low in fiber and lack nutrients like B-12, folic acid, and iron that are present (fortified or enriched) in wheat-based grains,” Richardson explained. “In order to compensate for the effect on taste and texture resulting from the removal of gluten, gluten-free products are frequently higher in sugar, fat and sodium than their wheat-based counterparts.”

Additionally, since so many people view being gluten-free as a fad diet, restaurant professionals do not take those with celiac disease as seriously as they should. Those with celiac disease need to be extremely careful about the potential for cross-contamination while eating out or when cooking.

“Since it has become ‘trendy,’ people question it more than when I had originally started being gluten-free,” Jennings said. “At this point, most people who know me well don’t question why I don’t eat it, although they may not always be considerate of it.”

The only treatment for celiac disease and nonceliac gluten sensitivity is the elimination of gluten. And with diagnoses on the rise and a market booming with gluten-free edibles, the GF frenzy will likely not disappear any time soon. That is a trend the large number of people with confirmed celiac disease are grateful for.