What Is Celiac Disease? And Sneaky Signs You Might Have It

Gluten-free diets may be popular, but they’re a necessity for someone who has celiac disease, which affects 2 million people in the United States. Trouble is, a huge number of those with the disease don’t know it. Estimates suggest that as many as 83% of people who have celiac are undiagnosed or have been misdiagnosed with something else.

So, what exactly is celiac disease, and how do you know if you have it? Read on to find out more about what to look for, and how you can get a proper diagnosis.

Celiac Disease versus Gluten Intolerance–What’s the Difference?

Celiac disease is an autoimmune condition in which the body sees gluten–a protein found in wheat, barley, rye and triticale–as a threat. As a result, the immune system mistakenly attacks a specific part of the gastrointestinal tract, called the villi. The villi cover the inner surface of the small intestine, supporting the digestion and absorption of nutrients. 

Over time, these persistent attacks from the immune system damage the intestinal lining, affecting nutrient absorption and leading to malabsorption and nutrient deficiency, among other complications.

Gluten intolerance, also known as non-celiac gluten sensitivity (or simply gluten sensitivity), is when an individual experiences symptoms similar to those of celiac disease when they eat gluten-containing foods.,

However, someone who has gluten intolerance has a different response to consuming gluten, and you don’t see the antibodies in their blood that are present with celiac disease. While this is still a developing area of research, recent studies indicate that gluten intolerance may be related to non-gluten parts of wheat, such as fermentable oligosaccharides, disaccharides, monosaccharides and polyols (FODMAPs), which can cause bloating, pain and other digestive ailments.

Sneaky Signs of Celiac Disease

Many of these signs and symptoms of celiac are similar to other conditions, and they can be misdiagnosed as Crohn’s disease, irritable bowel syndrome (IBS), lactose intolerance and more. If you have celiac, you may experience a range of digestive and non-digestive symptoms, such as: 

• Bloating
• Gas
• Abdominal cramps
• Nausea or vomiting
• Constipation 
• Diarrhea
• Skin rashes
• Headaches
• Anxiety
• Sluggishness
• Irritability
• Bone or joint pain

Since celiac disease affects nutrient absorption, children who have this condition may experience: 

• Failure to thrive
• Weight loss
• Slowed growth or short height
• Delayed puberty

How Do You Know If You Have Celiac Disease?

To find out whether you have celiac disease, your doctor will conduct various tests, usually starting with blood work and possibly including endoscopy, biopsy and genetic testing. Read on to learn more about each.

Blood Tests

Based on your symptoms, your health care provider may ask you to complete an antibody serology test to rule out other conditions. This is a blood test that involves looking for the presence or concentration of specific antibodies in the blood, such as immunoglobulin A and tissue transglutaminase (IgA-tTG).,

These antibodies help fight against what the body considers the “foreign substance,” which in the case of celiac disease is gluten. If these antibodies are found in your blood, it may mean that your body is trying to fight these gluten “invaders.” Based on your initial bloodwork, your doctor can also order follow-up testing if something isn’t clear. 

It is essential to continue eating gluten-containing foods before getting your blood drawn. That’s because eliminating gluten from your diet prematurely will affect your test results and can delay a correct diagnosis.

Intestinal Biopsy

If your blood work comes back positive, your doctor may also order a gastrointestinal endoscopy to examine the lining of your small intestine, where your doctor will look for signs of inflammation and damage. They may also complete a biopsy to confirm celiac.

If the antibodies don’t show up in your bloodwork and yet you still continue to experience symptoms while eating gluten-containing foods, your doctor may also recommend an endoscopy and a biopsy to rule out other conditions, such as wheat allergy or gluten sensitivity.

Genetic Tests

Because celiac disease may run in the family, your doctor may also do testing to determine if you have specific genetic variants. That said, not everyone who has one of these gene variants will end up developing celiac disease. What’s more, genetic testing alone can’t diagnose you with celiac—you’ll still need to go through the other testing mentioned on this list.

Celiac Disease versus Wheat Allergy and Gluten Sensitivity

If your bloodwork results don’t indicate the presence of the mentioned antibodies, your doctor may ask you to get tested for wheat allergy. The bloodwork for wheat allergy looks for the antibody IgE. In addition, an endoscopy also won’t show intestinal damage if you have a wheat allergy or gluten sensitivity.

Still, if you’re still having symptoms when eating gluten-containing foods but your test results are negative for celiac, your health care provider may ask you to try a gluten-elimination diet. If your symptoms improve, you may have a non-celiac gluten sensitivity. However, keep in mind that there is currently no formal consensus in the scientific community for diagnosing non-celiac gluten sensitivity.

Potential Complications of Untreated Celiac Disease

Leaving celiac disease untreated can take a real toll on your health. That’s because when you’re not absorbing food properly, you can become deficient in certain nutrients that lead to numerous health conditions, such as:

• Osteoporosis
• Iron-deficiency anemia
• Vitamin and mineral deficiencies
• Gallbladder malfunction
• Pancreatic insufficiency, leading to type 1 diabetes
• Infertility and miscarriage
• Neurological conditions, such as attention-deficit/hyperactivity disorder (ADHD), seizures, dementia and neuropathy

Research studies have also noted that people with celiac disease are also at risk of developing heart disease due to plaque buildup in the coronary arteries.

Management and Treatment of Celiac Disease

The primary treatment for celiac disease is following a gluten-free diet. This means avoiding foods and beverages that contain wheat, barley, rye, triticale, beer, malt, lager and more.

In addition to the obvious, there are some surprising foods that may contain gluten. You may find gluten in soups, dressings, condiments and candies, as well as in food additives such as thickeners, sauces, starches, flavorings and more. Always read the ingredients list and make sure that any packaged food you buy is processed in a gluten-free facility. Even the smallest amounts of gluten exposure from cross-contamination may be detrimental enough to damage the intestine. 

Also be mindful of non-food products that may contain gluten, like nutritional supplements and skin-care products, such as lip balms and lipsticks, as well as toothpaste.

If you have been diagnosed with celiac disease or gluten sensitivity, connect with a registered dietitian to guide you on a gluten-free lifestyle and ensure you are meeting your nutritional needs.

The Bottom Line

Celiac disease is an autoimmune health condition in which the immune system mistakenly sees gluten as a threat to the body, damaging the lining of the small intestine. 

Symptoms of celiac disease can be similar to those of other health conditions. That’s why seeking out a proper diagnosis is a key step to managing the symptoms and preventing damage to the body. Blood tests, endoscopy and biopsy can be used to make the diagnosis—but remember to continue to eat gluten-containing foods until you have a diagnosis.

Working with a registered dietitian can help you eat and live well while managing celiac. As you work with your dietitian, check out some of our resources, such as our Gluten-Free Foods List, to guide you throughout your gluten-free journey.