Celiac Disease

Celiac disease is an inherited autoimmune disease. It causes a reaction in your body to a protein called gluten. When you eat gluten, it triggers an abnormal response from your immune system. Your immune system attacks the gluten in your digestive system, causing inflammation. Inflammation damages the inside of your small intestine. This makes it harder for your intestine to absorb nutrients from your food.

Gluten is found in grains like wheat, barley and rye. These grains make up many of the staple foods of the standard Western diet. These include bread, cereals, pasta and beer. Gluten is also added to many food products that you wouldn’t expect. These include sauces, soups and packaged foods. If you have celiac disease, it’s important to eat gluten-free.

Is celiac disease serious?

Damage to your small intestine can cause serious complications. This is where most of the nutrition in your food gets absorbed. Severe damage can prevent your intestine from doing its job. If celiac disease goes untreated, it can lead to malabsorption and malnutrition. Malnutrition has many serious side effects, especially in children. Children with celiac disease may have growth and development delays.

Celiac disease symptoms

Signs and symptoms of celiac disease can appear at any age. Healthcare providers most often see it develop during two distinct age windows:

• The first is in early childhood, between 8 and 12 months old. This is when children may begin eating solid foods with gluten in them, like crackers or cereals.
• The other window is in mid-life, between the ages of 40 and 60.

Symptoms of celiac disease vary widely. This can make it hard to recognize. Some people don’t notice any symptoms at all. Some experience indigestion or other GI symptoms after eating gluten. Others only begin to see signs of nutrient deficiencies later on, when real damage has been done. In these cases, symptoms of anemia may be the first to appear.

You might have:

Gastrointestinal symptoms, like:

• Stomach pain
• Bloating
• Gas
• Diarrhea

Symptoms of iron-deficiency anemia, like:

• Paleness
• Extreme tiredness
• Cold hands
• Indented (concave) nails

Other symptoms of malnutrition, like:

• Unexplained weight loss
• Growth faltering in children
• Dental enamel defects
• Abnormal periods
• Trouble getting pregnant
• Irritability or depression

Dermatological symptoms:

Around 15% of people with celiac disease develop a condition called dermatitis herpetiformis. This is an itchy rash that looks like clusters of bumps or blisters. It affects your elbows, knees, butt and scalp.

What causes celiac disease?

Celiac disease is an autoimmune disease. That means it happens because your immune system reacts abnormally. This abnormal reaction to gluten develops in people with certain genetic changes (variants). You inherit these changes from your biological parents. Almost everyone with celiac disease has one of these gene changes (HLA-DQ2 or HLA-DQ8). But not everyone with these genes develops celiac disease.

Most autoimmune diseases, like celiac disease, are partly genetic. But other factors are involved in triggering the disease. Experts aren’t sure what all these factors are. Some suggest that the balance of microorganisms living in your gut might play a part. Others suggest that a major physical event, like an illness or surgery, might trigger it later in life. More research is needed to explore these theories.

Risk factors

You’re more likely to develop celiac disease if you:

• Are female
• Have another autoimmune disease
• Have a chromosomal disorder, like Turner syndrome, Williams syndrome or Down syndrome
• Have a first-degree relative (biological parent, sibling or child) who has it

What are the possible long-term complications of celiac disease?

If celiac disease goes untreated, it can cause complications. Some of these include:

• Malnutrition: Malnutrition can affect your body at every level. Changes to your nervous system and skeletal system can be hard to reverse. This is especially true when they occur during childhood development. Children may have stunted growth and development.
• Food intolerances: Damage to your intestinal lining can cause new food intolerances, like lactose intolerance. You may lose the ability to digest certain foods that you used to be able to.
• Collagenous sprue: This rare disease causes collagen deposits in the lining of your small intestine. These permanent deposits prevent your intestine from absorbing nutrients.
• Weakened immunity: Autoimmune diseases make you more vulnerable to illness, including other autoimmune diseases. Chances of developing a second autoimmune disease go up the longer celiac disease goes untreated. Celiac disease also becomes harder to treat.
• Liver disease: Celiac disease affects some people’s livers more than others. Early blood tests may show elevated liver enzymes. Over time, you can develop chronic liver disease.
• Cancer: Having untreated celiac disease can raise your risk of developing small intestine cancer. The risk is around 7%. It takes a long time for cancer to develop — usually several decades.

How do you know if you have celiac disease or something else?

You might suspect you have celiac disease if you have symptoms after eating gluten. Many people appear to have a sensitivity to gluten or wheat products in what they eat. Food intolerances can cause discomfort that mimics celiac disease. But they don’t damage your small intestine the way celiac disease does. To diagnose celiac disease, a healthcare provider will look for evidence of this damage.

Testing for celiac disease

Healthcare providers use two methods of testing for celiac disease. They prefer to use both together to confirm the diagnosis:

1. Blood test: First, your provider will test your blood for antibodies to gluten.
2. Biopsy: Then, they’ll look for damage to your intestinal lining. This requires taking a small tissue sample (biopsy). To take the sample, a GI doctor will perform an endoscopic exam of your small intestine.

Your provider may also want to test your blood for nutrient deficiencies. Severe deficiencies can have wide-ranging effects on your body. You may need nutrition therapy to treat them. Common findings include:

• Iron-deficiency anemia
• Vitamin-deficiency anemia
• Vitamin D deficiency

What is the treatment for celiac disease?

The first and most important step in treating celiac disease is to stop eating gluten. You can’t change the way your body reacts to gluten. But you can prevent gluten from triggering that reaction. When you stop eating gluten, your small intestine will begin to heal. It will soon be able to absorb nutrients again. But you have to be strict about not eating gluten — for life — or you could hurt your small intestine again.

Additional treatments may include:

• Nutritional supplements to replace any serious deficiencies
• Medications to treat dermatitis herpetiformis, like dapsone
• Corticosteroids for severe inflammation that’s not responding fast enough to what you’re eating
• Continuous follow-up care, including regular testing

How long does the treatment take to work?

Most people say their symptoms improve almost immediately after starting to eat gluten-free. It may take several weeks to reverse your nutrient deficiencies. It may take several months for your gut lining to fully heal. It can take longer, in some cases. It depends on how damaged your gut is and how long the damage has been going on. Eating any amount of gluten (however small) can also delay healing.

What is the outlook for people with celiac disease?

Most people who stop eating gluten have an excellent prognosis. Most of the damage done by celiac disease can be undone. If you continue to have symptoms, it may be that you’re consuming small amounts of gluten without realizing it. It’s also possible you have another condition. A small percentage of people have a type of celiac disease that doesn’t respond to standard treatments.

How do I stick to a gluten-free diet?

Avoiding gluten in all its forms can be daunting at first. You’ll have to learn to read labels carefully. You’ll need to watch out for gluten that sneaks into foods. The good news is that there are many resources available to help you. Your healthcare provider will refer you to a registered dietitian to get you started. There are also many dedicated support groups and references online.

It might help to:

• Develop a go-to home menu: Look at some recipe guides. Pick out a few recipes that you think you could throw together easily and eat often. Get in the habit of keeping those ingredients in stock. That way, you’ll always have something you can eat without having to think about it.
• Keep a few gluten-free snacks on hand: Keep a stash in your car, bag or office desk in case you can’t find anything else to eat when you’re away from home.
• Find a few go-to restaurants: Find local restaurants with reliable gluten-free menus or choices. Check menus online before arriving. Speak with the staff in advance to make sure they can provide for you.
• Carry gluten test strips: These strips can test the gluten content of new foods when you aren’t certain what’s in them.