How to Identify and Manage Celiac Disease

Grains like wheat, barley, and rye are generally considered to be healthy, as they have vitamins, minerals, fiber, and antioxidants. However, they also contain a protein called gluten, which can be very harmful for people who have celiac disease.

Gluten triggers an autoimmune reaction in people with celiac disease. Their immune system produces antibodies to attack the gluten. Those antibodies also damage the lining of the small intestine — where food is digested and nutrients are absorbed — making it more difficult for people with celiac to get proper nutrition.

Celiac disease can also cause other long-term health issues, such as fertility problems, neurological conditions, and increased cancer risk.

It’s estimated that about two million people in the U.S. have celiac disease. Many of them don’t know they have it. Let’s take a closer look at celiac disease, including its symptoms, how to find out if you have it, and ways to successfully manage the condition.

Who is at Risk for Celiac Disease?

Celiac disease is genetic, as almost everyone affected by the disease has certain human leukocyte antigen genes they inherited from their parents. If you have a parent with celiac disease, your risk of getting it is higher. However, not everyone with the genes develops celiac. Only three out of every 100 people who carry the genes will get the disease.

Other factors possibly contributing to development of celiac disease include:

• Northern European heritage
• Chromosomal disorders such as Turner syndrome, Williams syndrome, or Down syndrome
• Other autoimmune diseases such as Type 1 diabetes, rheumatoid arthritis, or Addison’s disease.

The exact cause of celiac disease is unknown. A combination of genetic and environmental factors may trigger the condition. For example, it can appear after someone has surgery, an illness, or a pregnancy. Theories about the disease’s cause include viral infections, immune system stress, and imbalances of microbiota in the digestive tract.

Celiac disease can appear at any age, but its development is most common in children between 8 and 12 months old. It also tends to appear in mid-life, between ages 40 and 60.

Celiac Disease Symptoms

Celiac disease often has digestive symptoms. The most common are:

• Diarrhea
• Bloating and gas
• Abdominal pain
• Nausea and vomiting
• Constipation

Not everyone with celiac has digestive symptoms. Some cases are “silent” or asymptomatic, where the disease damages the small intestine without causing any obvious digestive distress.  

Some symptoms are related to small intestine damage and the inability to absorb enough nutrients. Those may include:

• Fatigue
• Weight loss
• Anemia
• Loss of bone density
• Mouth ulcers
• Headaches
• Numbness and tingling in feet and hands
• Joint pain

Gluten antibodies that harm the small intestine can also cause a skin rash called dermatitis herpetiformis. It’s an itchy rash appearing in groups of bumps or blisters, which typically form on elbows, knees, buttocks, and the back.

How to Get Tested for Celiac Disease

If you suspect you may have celiac disease, contact your primary care provider. They can do a blood test to see if you have antibodies to gluten. It’s important to get tested if you have a family history of celiac disease — even if you’re not experiencing any symptoms. Your primary care provider may refer you to a gastroenterologist.

If antibodies are present in your blood, you may be asked to have an upper endoscopy to confirm celiac disease. In that procedure (done under anesthesia), a thin tube is inserted down your throat and stomach until the small intestine is reached. There a tissue sample (biopsy) is taken. The sample will later be examined under a microscope to determine if there is damage to the small intestine being caused by celiac disease.

Treatment for Celiac Disease

There’s only one treatment for celiac disease and it may seem simple — don’t eat anything containing gluten. If you have celiac, eliminating gluten from your diet will help your small intestine heal and prevent more damage from occurring.

Giving up gluten is more complex than it sounds. Not only will you have to avoid products made with grains like wheat, barley, and rye, you’ll need to carefully read labels to detect gluten that’s added to some foods.

Gluten can be in many packaged and processed food products, such as:

• Meat, fish, and poultry including cold cuts, hot dogs, and sausage.
• Veggie burgers and other meat and fish substitutes that use gluten as a filler.
• Chips and fries that use seasonings containing gluten. Oil used to cook chips and fries may also be contaminated with gluten.
• Oats that have been cross-contaminated with gluten from other products.
• Breakfast cereal made with malt from barley.
• Coffee and teas that have flavoring added.
• Beer and malt beverages made from grains that have gluten in them.
• Ice cream that contains certain flavorings, like cookie dough.
• Cheese that has added flavorings.
• Soy sauce which is usually made from wheat.
• Malt vinegar which is made from barley.
• Salad dressings where gluten is used as a thickening agent (food starch).
• Soups and gravies that have gluten as a thickener.

Gluten can be added to medications and supplements as a filler or coating. It can also be present in topical products that may be inadvertently ingested, such as lip balm, lotions, and cosmetics.

It only takes a tiny amount of gluten — as little as 10 milligrams — to trigger a reaction and cause intestinal damage, pain, and side effects in a person with celiac disease. That’s why it’s critical to read labels and prevent cross-contamination.

To avoid purchasing products containing gluten, look for gluten-free labeling or a gluten-free certification. More information on certified gluten-free products is available from the National Celiac Association.

Avoiding Gluten When Dining Out

When going out to eat, advance planning is essential for people with celiac. Be sure to:

• Research restaurants to look for ones that are certified in gluten-free practices. Apps like Find Me Gluten Free can help find restaurants that offer gluten-free dining.
• Check online menus to see if a restaurant offers gluten-free items.
• Call ahead to talk with a restaurant’s staff and get more information about their gluten-free choices.
• Tell the server when you are seated that you cannot eat anything with gluten and ask them to inform the chef.
• Ask questions as you order about ingredients or sauces. Inquire if the gluten-free items are made in a separate area to avoid cross-contamination.  

If you are planning to dine in the Burlington area, check out this gluten-free dining guide for recommendations. For suggestions in other parts of the state, read about 10 places to eat gluten-free in Vermont.

Making Your Home Safe

If you or a family member has celiac disease, you’ll need to take steps to ensure that your home is safe. This includes:

• Helping your family understand the risk of cross-contamination and the importance of cleaning up after using products containing gluten.
• Separate marked containers of items such as peanut butter, jelly, and mayonnaise to prevent cross-contamination.
• A dedicated gluten-free toaster for the person with celiac to use.

How to Get Help

There’s a lot to learn about celiac disease and avoiding gluten. We’ve only scratched the surface in this article. Fortunately, help is available for people who’ve been newly diagnosed with celiac.

A registered dietitian or nutritionist can teach you how to spot products containing gluten and help you establish a gluten-free diet. Your primary care provider or gastroenterologist can refer you to one. Or to find an in-network registered dietitian near you, please use our enhanced Find-a-Doctor tool.