Celiac disease (also known as celiac sprue) is an autoimmune disorder. It happens when an individual ingests gluten — a protein found in certain grains — and experiences damage to the small intestine. In this blog, we're exploring how many individuals in the United States have celiac disease, some of the more prominent celiac disease symptoms, the risk factors, and more.

How Many People in the US Have Celiac Disease?

According to Beyond Celiac, about 1% of the American population has celiac disease. However, other research says that there might be even more people with celiac disease than we realize. In particular, closer to 2% of children might have celiac disease, although it can vary by region.

Another reason these numbers might not be accurate is that of the individuals affected by celiac disease, only 30% are properly diagnosed.

Why We Must Diagnose Celiac Disease Early

Untreated celiac disease can lead to a whole host of other complications. When a celiac disease diagnosis happens early, the individual has a better chance of avoiding additional health problems. Here's how it breaks down by age, according to the Celiac Disease Foundation:

• If the individual is diagnosed with celiac disease between two and four years of age, they have a 10.5% chance of developing another autoimmune disease.

• Between four and 12 years of age, 16.7%.

• Between 12 and 20 years of age, 27%.

• Over 20 years of age, 34%.

In other words, the older an individual gets, the more that their untreated celiac disease can wreak havoc on their body. It can lead to iron deficiency/anemia and other nutritional deficiencies. This is because the small intestine works to absorb nutrients, and with time, intestinal damage from eating gluten may disrupt absorption in individuals with celiac disease.

People with untreated celiac disease might also experience elevated liver enzymes, and even kidney diseases and liver disease. Furthermore, it can lead to the development of other autoimmune diseases, like type 1 diabetes and multiple sclerosis (MS).

What Are the Most Common Celiac Disease Symptoms?

While people with celiac disease can have their own unique experiences, digestive symptoms are the most prominent symptoms of celiac disease, similar to irritable bowel syndrome (IBS). These symptoms include:

• Bloating.

• Gas.

• Constipation.

• Chronic diarrhea.

• Nausea/vomiting.

• Abdominal pain.

• Abnormal stools.

• Lactose intolerance, which happens because of damage to the small intestine.

Other symptoms of celiac disease can include:

• Dermatitis herpetiformis.

• Fatigue.

• Bone or joint pain.

• Mental health challenges, like anxiety or depression.

• Nervous system problems, like headaches or seizures.

• Reproductive problems, including infertility, miscarriages, and a delayed start of menstruation.

• Oral health problems, including canker sores and dry mouth.

Who's Most at Risk of Developing Celiac Disease?

What individuals are at an increased risk of eventually developing celiac disease? Aside from having a family health history of celiac disease or dermatitis herpetiformis (another type of gluten-sensitive enteropathy), other risk factors include:

• Type 1 diabetes.

• Autoimmune diseases of the thyroid.

• Microscopic colitis.

• Addison's disease.

• Down syndrome, William syndrome, or Turner syndrome.

Please note that while a family history increases the likelihood that an individual will develop celiac disease, it does not guarantee it. Someone can develop celiac disease at any time purely as a response to the gluten-containing food they eat.

Learn more in our blog: Is Celiac Disease Genetic?

Gluten Intolerance Vs Celiac Disease

We want to make an important distinction! Having a negative reaction to gluten does not automatically mean that you have celiac disease. Celiac disease is an autoimmune condition. On the other hand, gluten sensitivity is not an autoimmune reaction. Rather, after eating gluten, the individual might experience gastrointestinal symptoms and other symptoms like headaches, sneezing, a stuffy or runny nose, hives, or rashes.

Importantly, individuals who eat gluten and simply don't feel well after typically do not experience damage to their small intestine and won't test positive for celiac disease.

Sensitivity to gluten affects more people than celiac disease does — somewhere in the ballpark of 6%.

Celiac Disease Vs a Wheat Allergy

Another note: Celiac disease is not the same as having an allergy to wheat. In celiac disease, there's a negative immune response to gluten. However, when someone is allergic to wheat, the body produces antibodies in response to the proteins found in wheat.

Who Should Follow a Gluten-Free Diet?

If an individual experiences a negative reaction after eating bread or pasta, should they switch to a strict gluten-free diet?

The first step is to speak with a healthcare provider. A celiac panel is necessary to determine if the body's immune system is indeed reacting poorly to gluten. If that's the case, the provider might recommend that the individual stop eating gluten. This is the main way to treat celiac disease, protect the intestinal lining, and prevent digestive problems.

If the test comes back negative for celiac disease but the individual still responds poorly to it, then it's a smart idea to ask if they should avoid gluten in their diet.

Outside of having a clear and unfavorable reaction (like digestive symptoms), for most people, it's not necessary to go gluten-free. For years, research has found that as long as the digestive system and immune system can handle it, gluten is not unhealthy.

We'd also like to point out that despite the media sensationalizing a strict gluten-free diet, this should not be treated as a weight loss tool. Avoiding eating foods with gluten isn't the proper way to manipulate body weight. Instead, speak with your provider!

Managing Celiac Disease

People with celiac disease can still live healthy lives by following a gluten-free diet.

If you think you might be affected by celiac disease, a physical exam and blood tests are in order! Learn more about our celiac panel and how we can help you, or take our celiac disease quiz.