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Celiac Disease

What is celiac disease?

Celiac disease is a genetic autoimmune condition (when your immune system attacks healthy tissue by mistake). If you have celiac disease, your immune system attacks your small intestine and causes inflammation (swelling) and damage when you eat foods that contain a type of protein called gluten. Gluten is found in many common foods such as wheat, barley, rye, some oats and yeast.

Celiac disease is the most common name for the condition, but you might also hear it called celiac sprue, gluten-sensitive enteropathy or nontropical sprue.

What are the symptoms of celiac disease?

If you have celiac disease, symptoms may come and go and they can range from mild to severe. You may notice:

  • Digestive issues such as diarrhea, constipation, indigestion, abdominal pain, bloating and fatty stools (digestive symptoms are more common in children than in adults)
  • Headaches
  • Fatigue
  • Nausea
  • A skin rash called dermatitis herpetiformis on your scalp, elbows, torso, buttocks and knees – sometimes, this rash is the only sign of the disease
  • Mouth ulcers
  • Weight loss
  • Cold hands
  • Numbness in the hands and feet
  • Balance issues
  • Nervous system problems
  • Joint, muscle or bone pain 
  • Depression or anxiety

Some people don’t notice symptoms until the damage to the small intestine causes nutritional problems. Children with celiac disease may have slow growth and development, as well as damage to tooth enamel, irritability, delayed puberty and neurological symptoms such as attention deficit hyperactivity disorder (ADHD), learning disabilities and seizures.

In some cases, you may have celiac disease, but you don’t have symptoms. Your health care provider may notice problems such as anemia or elevated liver enzymes on routine blood tests. Your dentist may also notice problems with your teeth or mouth that could be caused by celiac disease.

Risk factors for celiac disease

Celiac disease is more common in people of northern European descent and in women. 

Your risk of developing celiac disease is higher if you have:

  • A family member with the condition
  • Type 1 diabetes
  • Rheumatoid arthritis (RA)
  • Autoimmune thyroid disease
  • Addison’s disease (hypocortisolism)
  • Microscopic colitis
  • Down syndrome
  • Turner syndrome
  • Williams syndrome (WS)
  • Hashimoto’s disease (Hashimoto’s thyroiditis)
  • Multiple sclerosis (MS)
  • Autoimmune hepatitis
  • Sjögren’s syndrome
  • Lupus
  • Irritable bowel syndrome (IBS)

Celiac disease vs. gluten intolerance

It’s important to recognize the difference between celiac disease and gluten intolerance. Both conditions can have the same symptoms and you can treat both by not eating gluten. But celiac disease is an autoimmune disorder, while gluten intolerance is a sensitivity. Celiac disease damages your intestines.

With celiac disease, you need to avoid gluten completely. A crumb of bread that makes it into your small intestine can trigger symptoms. With gluten intolerance, you may be able to eat small amounts of gluten without having issues. You can experiment to find the amount of gluten you can tolerate without triggering symptoms.

Is celiac disease genetic? 

Celiac disease is a genetic condition, which means it’s passed down from your family and you can’t prevent it. However, you can manage your symptoms and keep the damage from getting worse by eating a gluten-free diet. When you don’t eat gluten, the damage to your small intestine can heal. 

How is celiac disease diagnosed? 

Talk to your doctor if you have digestive discomfort or diarrhea lasting more than two weeks. Contact your child’s doctor if your child has a potbelly and large stools that are very smelly. If you know that someone in your family has celiac disease, ask your health care provider if you or your children should be tested. Don’t try a gluten-free diet before seeing your provider, as it could change your blood test results.

A diagnosis of celiac disease isn’t based only on your symptoms. This is because other digestive conditions such as lactose intolerance, Crohn’s disease, irritable bowel syndrome (IBS), ulcerative colitis, diverticulitis, small intestinal bacterial overgrowth (SIBO) and intestinal infections may have similar symptoms. 

If your provider suspects celiac disease, here’s what might happen next:

  • Blood test: This is usually the first step. A blood test can check for high levels of antibodies that show your immune system is reacting to gluten. Your blood can also be tested for nutrition problems linked with celiac disease. 
  • Endoscopy: Your doctor may recommend an endoscopy if your blood test results hint toward celiac disease. With this scan, your doctor passes a tiny camera through your mouth and into the small intestine to look for signs of the disease. They can also use small tools to take a small tissue sample, called a biopsy.
  • Capsule endoscopy: For this test, you swallow a tiny camera that fits inside a capsule the size of a vitamin. It takes and transmits photos of the inside of your small intestine as it passes through your digestive system.
  • Genetic testing: Testing for specific gene variants (mutations) called DQ2 and DQ8 can help rule out celiac disease. About 97% of people with celiac disease will have a genetic mutation, so if you don’t have one celiac disease is unlikely. However, not everyone with the gene mutation develops celiac disease.
  • Skin biopsy: If you have a rash that could be dermatitis herpetiformis, your doctor may want to remove a small skin sample for testing. 

How is celiac disease treated?

The primary treatment for celiac disease is to avoid all gluten. This will keep symptoms at bay and help your small intestine heal and stay healthy. But starting a gluten-free diet can be challenging, especially at first.

Ingredients that contain gluten – including wheat, barley, rye, most oats and yeast – are found in a lot of foods, including bread, baked goods, crackers, cereals, processed meats and dairy products, noodles, pasta and beer. 

Also, products that include gluten are often used as food coatings, thickeners and in non-food products, so you need to read labels carefully. You can find gluten in some types of French fries, potato chips, candy, sandwich meats, soup, salad dressings, medications, supplements, cosmetics, Play-Doh, soy sauce and eggs that are served in restaurants. You should never assume a product is gluten-free unless it says “gluten-free” on the label.

Most whole foods - such as vegetables, fruit, rice, potatoes, corn, beans, nuts and unprocessed meat, poultry and seafood – are naturally gluten-free. Flours made from gluten-free foods, such as almond flour and coconut flour, are safe. 

Avoiding gluten cross-contamination is essential because even the smallest bit of gluten can trigger your symptoms. Following these tips can help:

  • Work with a registered dietitian who can help you find gluten-free foods you enjoy.
  • Ideally, keep foods that contain gluten out of your home. If other family members eat gluten, be sure they wipe counters thoroughly and clean cutting boards, knives and other tools that come into contact with foods that contain gluten. Carefully store foods that contain gluten away from yours.
  • Check restaurant menus online and talk with the staff to ensure that your meals can be prepared safely – even if they say some dishes are gluten-free. Some restaurants are more cautious than others - you may want to find a few favorites where you know they will fully accommodate gluten-free guests.
  • Carry gluten test strips so you can double check foods, especially when you’re away from home.
  • Learn to cook a few favorite gluten-free meals and keep the ingredients you need for them on hand.
  • Be careful with oats, since they often cross-contact with other grains.

To treat celiac disease, some people also need medication to help control inflammation. Steroids, azathioprine or budesonide are often prescribed. You may need to take supplements to make up for nutritional problems caused by the disease. You might also need a medicine called dapsone to treat dermatitis herpetiformis.

Most people start to feel better as soon as they begin eating a gluten-free diet, but healing can take time. In children with celiac disease, the small intestine can heal after three to six months on a strict gluten-free diet. In adults, it can take several years.

Regular follow-up with your health care team is important, even if you feel better. Your provider can monitor your condition, help you make sure your diet stays gluten-free and perform blood tests to check for nutrition problems. These visits also allow you to ask questions and seek ongoing guidance.

How to manage social situations

Gluten is a part of many foods, so navigating restaurants, social gatherings and travel can be a challenge. Following these tips can help:

  • Look for restaurants that have gluten-free menus.
  • Explain to servers that you have celiac disease, ask what ingredients are in your meal and how it is prepared.
  • Be sure servers understand that you can’t have any gluten at all — ask to speak with the manager (or call in advance) if you think it would help.
  • Let hosts at weddings, graduations and parties know you have celiac disease and ask if a gluten-free menu will be available. 
  • Carry gluten-free snacks in case you’re in a situation where you don’t feel you can avoid gluten in the foods that are offered.

What causes celiac disease later in life?

Celiac disease is often diagnosed in one of two life stages—early childhood (when babies first start eating foods that contain gluten) and age 40 to 60. It’s possible that digestive infections and gut bacteria can help celiac disease become active later in life. Some people find their symptoms start after severe emotional stress or physical stress such as surgery, pregnancy, childbirth or infection. Research is ongoing to better understand the causes of celiac disease later in life.

What are the risks and complications of celiac disease?

For people with celiac disease, damage to the small intestine means you don’t always absorb nutrients properly, so you’re at risk for nutrition problems. You’ll want to choose a well-balanced diet that includes essential vitamins, minerals and fiber. You will probably need vitamin supplements.

Untreated celiac disease could lead to these health problems in the long term:

  • Other autoimmune diseases, such as thyroid disease, psoriasis, type 1 diabetes or multiple sclerosis
  • Anemia, caused by iron deficiency
  • Osteopenia and osteoporosis
  • Lactose intolerance
  • Defects in teeth
  • Infertility
  • Epilepsy
  • Migraines
  • Peripheral neuropathy (damage to the nerves in the hands and feet)
  • Seizures
  • Heart disease
  • Liver disease
  • Cancer or lymphoma in the small intestine

Connecting with support and resources

Getting rid of gluten from your diet is very important for treating celiac disease. However, giving up bread, pasta, noodles and baked goods can be a big change. But once you’re used to it, you’ll find that a gluten-free lifestyle improves your overall health and well-being. Connecting with local support groups can also help — ask your doctor or dietitian for a recommendation. 

You can also find additional information and connect with others who have celiac disease through these organizations:

If you think you or your child might have celiac disease, a Banner Health professional can help.