Yes, You Can Have a Gluten Sensitivity and Not Be Celiac. Here's the 411.

Published December 6, 2021 11:45AM

With the gluten-free diet gaining popularity year over year – including gluten-free options getting major traction on menus and store shelves – many people are reaching for gluten-free choices. In fact, 30% of adults are interested in avoiding or cutting down on gluten in their diets, according to a recent study conducted by the NPD Group, a consumer research firm. But sometimes people opt for gluten-free foods without really understanding the difference between celiac, gluten sensitivity or other reasons for going gluten-free.

There are several health conditions that center around people not feeling well when they eat gluten. But whether that’s because of an autoimmunity like celiac disease, a gluten sensitivity or another reason, does make a difference – and an important one at that. Here’s help for understanding these unique conditions and sorting fact from fiction when it comes to eating gluten free.

What is gluten? And which foods contain gluten?

Before we dive into the difference between gluten sensitivity and celiac, let’s first take a closer look at what gluten is. Even though gluten is found in carb-containing foods, it is actually a protein. Or rather, a family of proteins. There are two main types of gluten proteins: 1) gliadin, which gives food height, and 2) glutenin, which gives foods elasticity and texture. Gluten proteins are found in grains, but not all grains contain gluten. These grains contain gluten:

Common foods that contain these grains (and therefore contain gluten) are many, but not all, types of:

What’s the difference between celiac disease, gluten sensitivity and a wheat allergy?

There are several medical conditions affected by gluten. If you are diagnosed with any of these conditions, it’s essential to avoid the offending trigger (gluten) in order to manage symptoms. Here are the key differences between these conditions:

Gluten intolerance

A blanket term that “encompasses both celiac disease and non-celiac gluten sensitivity,” explains Amy Burkhart MD, RD; physician and registered dietitian (The Celiac MD). “Gluten intolerance means a person experiences symptoms after eating gluten, for any reason.”

Celiac disease

A genetic autoimmune condition, celiac disease is a condition where the body attacks the lining of the small intestine when gluten is ingested. Overtime, long-term health complications surface if a person with celiac disease does not adhere to a strict gluten-free diet. There are more than 300 symptoms of celiac disease, and gastrointestinal issues are present in only about 30% of people diagnosed. Some of the most frequent symptoms include diarrhea, bloating, fatigue, headaches, unintended weight loss, pain in the abdomen or joints, skin rashes and delayed growth (in children). “Celiac disease is diagnosed through blood tests, intestinal biopsy and clinical history,” says Dr. Burkhart. “Currently, the estimates are that 80 percent of people living with celiac disease are undiagnosed. The longer celiac disease goes undiagnosed, the more long-term health complications that arise. In my experience, it typically takes someone with celiac disease about 3 to 6 months to really understand the diet, plus a lifetime of continued observation to avoid gluten contamination and to assure that changes to products and labels are monitored.”

Non-celiac gluten sensitivity

A consistent adverse reaction to eating gluten-containing foods. Symptoms most often relate to distress of the gastrointestinal tract, and the main one is diarrhea, but can also include frequent belching, fat in stools, heartburn, indigestion, nausea, vomiting and flatulence. Non-GI symptoms may include migraines, joint pain, fatigue, and even depression or anxiety. “Non-celiac gluten sensitivity is diagnosed only after a person who experiences symptoms from eating gluten is appropriately tested for celiac disease and is found to not have celiac disease,” explains Dr. Burkhart. “There is currently no valid blood, stool or saliva test to diagnose gluten sensitivity. In my experience, it usually takes someone with gluten sensitivity less time (than someone with celiac disease) to learn the diet, due to the fact that they typically do not have to pay as close attention to cross contamination and small amounts of hidden gluten. There are some people with gluten sensitivity who have to be concerned about cross contamination of gluten, but it is not the majority.”

Wheat allergy

Not classified as a gluten intolerance, but rather has to do with avoiding wheat, specifically. Similar to other food allergies, people with a wheat allergy have an allergic reaction when wheat is ingested. Allergic reactions may include digestive problems, hives or swollen airways, and severe reactions can be life-threatening. People with a wheat allergy often can still eat other grains, including gluten-containing grains. There is no such thing as a gluten allergy.

Other conditions where gluten-free eating is common

Additionally, people with some other conditions may or may not benefit from a gluten-free diet. “Many patients with chronic digestive disorders, such as inflammatory bowel disease, colitis or irritable bowel syndrome choose to follow a gluten-free diet because they state they feel better not eating gluten. But this actually puts them in the gluten sensitive category,” explains Dr. Burkhart.

With inflammatory bowel disease, “there have been no prospective studies evaluating the role of a gluten-free diet in decreasing symptoms,” says Dr. Burkhart, “however, some animal studies have shown gluten ingestion may increase intestinal inflammation and intestinal permeability. There are some reports that suggest it may be helpful for someone with IBD to follow a gluten-free diet, but no randomized prospective controlled trials.”

As for other autoimmune conditions where the gluten-free diet is often used – such as multiple sclerosis, type 1 diabetes, and more – there is no data to support or refute the claims of a benefit with the gluten-free diet. “However, anecdotally, there are many people with autoimmune conditions and other conditions who report feeling better on a gluten-free diet,” says Dr. Burkhart. “Again, that makes them gluten sensitive, and thus, they should avoid gluten. But, for those who have no symptoms from gluten ingestion, we simply don’t know if the gluten-free diet is of any benefit.”

Is there a benefit to going gluten free if you don’t have to?

“In the absence of a gluten intolerance, there really isn’t any reason to follow a gluten-free diet,” says Jessica Beacom, RDN and cofounder of The Real Food Dietitians. “Of course, there are times when symptoms of gluten intolerance exist, but a person does not meet diagnostic criteria. They do, however, report resolution of their symptoms after going on a gluten-free diet. In this case, maintaining a gluten-free diet makes sense.”

Another reason? To support a family member or someone in the same household who must follow a gluten-free diet and is struggling with the social challenges or logistics of avoiding gluten. Dr. Burkhart explains that the impact that a strict gluten-free diet has on someone’s social life is a major hurdle. “It is challenging to attend events and weddings or to travel when maintaining a strict gluten-free diet. For children, the impact can be more significant since they don’t have the level of understanding of the health impacts that adults typically do. For adolescents, it’s a challenge because so much of their social life is based on fitting in. For a parent, sending a celiac child to college can be daunting since most universities don’t have celiac-safe cooking and dining establishments. And for the elderly who may need long-term care, those facilities typically cannot safely accommodate someone adhering to a strict gluten-free diet.”

Finally, Dr. Burkhart says that sometimes someone with a certain health condition may be convinced that a gluten-free diet is helpful, which gives them an important sense of empowerment. “That can be a helpful tool in the management of certain health conditions,” she says. “As long as they are maintaining a nutritionally balanced diet, and not developing anxiety around eating, there is no harm in following a gluten-free diet.”

What about reasons not to go gluten free?

In addition to the social challenges, Dr. Burkhart points out that the gluten-free diet is expensive. “Why spend more money if you don’t need to?”

She adds that, while the number of people following a gluten free diet has increased, it doesn’t mean that many of them need to be doing so. “In my experience, people who don’t suffer symptoms from eating gluten, don’t tend to stay on the diet long-term, similar to any other restricted diet.”

Are there nutrients of concern for someone following a long-term gluten-free diet?

“Because gluten-free diets exclude many whole grains, people who follow the diet long term may need to supplement their intake of magnesium, selenium, riboflavin, niacin, and thiamine, which are minerals and B vitamins found in wheat and other gluten-containing grains,” says Beacom. “Additionally, they may have an increased need for folic acid, which is often added to enriched wheat products, and most gluten-free products are not enriched with vitamins and minerals.”

A 2019 study suggests that people who have been following a gluten-free diet for six months or longer should test for nutritional deficiencies, such as low levels of folic acid, vitamin B12, vitamin D, calcium, iron, zinc, selenium and magnesium. They should then work with a registered dietitian to find strategies to increase non-gluten sources of these nutrients and/or establish a personalized supplementation plan.

FAQ: Gluten intolerance, sensitivity and celiac

When should someone test for gluten intolerance?

If you have persistent digestive issues that you believe could be related to gluten, talk to your doctor about being tested for celiac disease. Currently, there is no validated test for gluten sensitivity. Even if gluten hasn’t been a concern for you in the past, but you have digestive discomfort or diarrhea lasting for more than two weeks, it’s a good idea to talk to your doctor about your symptoms and being tested for gluten intolerance. “It is difficult to determine who may be intolerant to gluten, given the spectrum of symptoms,” says Dr. Burkhart. “It is recommended that all first-degree relatives and symptomatic second-degree relatives of celiac patients be screened for celiac disease. Beyond that, the guideline recommendations for testing are not solidified.” Since symptoms are not always GI-related, you may want to consider and ask your provider about gluten intolerance if you’re suffering persistent symptoms (such as anxiety, depression, migraines or skin breakouts) for which a cause can not be found, suggests Dr. Burkhart.

Is gluten sensitivity growing?

“The incidence of celiac disease is on the rise, as are the number of all other autoimmune conditions,” says Dr. Burkhart. “As far as an increase in gluten sensitivity is concerned, we don’t know, as it is currently a diagnosis of exclusion, so the actual incidence of this condition is unknown.”

Is gluten-free a weight-loss diet? Is it healthy?

“While the gluten-free diet can be healthy – and it can supply all the essential nutrients and vitamins – it largely depends on how it is applied and if other food groups are excluded,” says Dr. Burkhart. “If gluten is removed and replaced with processed gluten-free foods (which are often higher in sugar, lower in fiber, and frequently not fortified with nutrients) then the nutritional value of the gluten-free diet decreases. However if someone eats a gluten-free diet that focuses on real, whole and minimally processed foods, and one that is low in added sugars, it can be a healthy way to eat, in that case.”

Is gluten in America different than it is in other parts of the world?

“No,” says Dr. Burkhart. “Gluten is gluten. However, it is true that a large number of people with gluten sensitivity say they can tolerate gluten from outside of the U.S. (in Europe, for example). No one is exactly sure why that is, but I know researchers are considering looking into an explanation for this. People with diagnosed celiac disease, however, can not eat gluten from any country.”

Is the growing interest in a gluten-free diet a good thing, or a bad thing?

Just like most things in life, there are pluses and minuses, explains Dr. Burkhart. On the plus side, she says interest in gluten-free has created a demand for more gluten-free products, increased awareness of celiac disease, and a slight increase in the number of people tested for and diagnosed with celiac disease. “More awareness means more research is being done about celiac disease and gluten sensitivity. And treatments beyond the gluten-free diet are being explored. Additionally, other reasons for intolerance to gluten are being explored and researched as a means to help a variety of other health conditions and, potentially, millions of people.”

On the down side, she says the biggest risk of the increased awareness of the gluten-free diet is that a little bit of knowledge can be dangerous.’ “Because of the massive confusion about what gluten intolerance, celiac, and gluten sensitivity really mean, there is a lot of misunderstanding by the public, providers and patients as to the level of caution that certain people need to take. Because of the fad component to the diet (i.e. associating it with a weight-loss trend) people with serious conditions, such as celiac disease, are misunderstood.”

Consider the confusion of a restaurant worker who may not understand why one person orders a beer but asks for a gluten-free sandwich, while another person with celiac asks them if the gluten-free items are cooked on the same surface as the gluten-containing items on the menu. Scenarios like this, unfortunately, are common in the food service industry. But confusion about gluten avoidance versus gluten intolerance isn’t exclusive to restaurants.

“There is also a persistent lack of understanding even amongst health care providers as to the difference in the level of dietary discretion needed between celiac patients and people with gluten sensitivity,” says Dr. Burkhart. “I have had celiac patients tell me that their doctor told them it was OK to eat gluten on special occasions because you don’t want to miss out on life, and a little gluten wouldn’t hurt them. This is simply and fundamentally wrong.”

Celiac or have gluten sensitivity? Try one of these resources

The web and social media can be a source of community, information and inspiration for people with celiac and gluten sensitivity. Here are some trusted expert online resources: