Celiac Disease: Causes and Symptoms
What is celiac disease?
Celiac disease causes inflammation in your digestive tract (gut). When you eat gluten—a protein in wheat, rye, and barley—your immune system attacks your small intestine. That causes inflammation, and leads to diarrhea, weight loss, abdominal pain, and many other symptoms.
Because the inflammation makes it harder for your body to absorb nutrients, it can also lead to complications like iron deficiency anemia, osteoporosis (low bone density), and other diseases. Following a strict gluten-free diet can help get rid of symptoms.
What are the symptoms of celiac disease in adults?
Symptoms I listen for when diagnosing this illness: “I've had diarrhea forever.” “My mom had anemia or osteoporosis or was really thin despite eating well.” “I’ve always been shorter than all of my siblings.” “I’ve had these symptoms for years.” “I’ve always been anemic.” —Dr. Adam Pont
Celiac disease can cause a range of symptoms in adults. It can cause diarrhea, oily stool (called steatorrhea), bloating, belly pain, and weight loss, though not all adults with celiac have digestive tract symptoms.
It can also cause fatigue, an itchy rash, iron deficiency anemia, and low bone density. It may not cause any noticeable symptoms in some people.
Other symptoms you may have
- Chronic itchy skin rash (dermatitis herpetiformis)
- Iron deficiency anemia (because nutrients are not absorbed)
- Reduced bone density (osteopenia or osteoporosis)
- Tingling, numbness, or pain in the hands and feet (called peripheral sensory neuropathy)
- Infertility (in women)
- Ataxia, which is a neurological syndrome that makes it hard to coordinate movement
Celiac disease causes
Almost all people with celiac disease have a particular gene variant. But having this gene variant does not guarantee you will get the disease. However, if a parent or brother or sister has celiac disease, you have an increased risk of having celiac disease yourself.
Celiac is more common in women and people previously diagnosed with irritable bowel syndrome (IBS), type 1 diabetes, thyroid disease, or Down syndrome or Turner syndrome.
Treatment for celiac disease
There has been a significant increase in new gluten-free food products, with many available at local supermarkets. You may still be able to make many of your favorite food dishes with some key substitutions. Reading labels will be very important when you go food shopping. —Dr. Pont
Celiac disease is managed by following a strict gluten-free diet to help prevent symptoms and long-term complications.
Avoiding gluten in your diet is not easy. It means you can't eat bread, pastas, and other wheat-based foods. But the good news is that there are more foods available—including bread and pasta—that are gluten-free.
Still, always read package labels carefully and look for “gluten-free” markings. Sometimes there is gluten in foods you wouldn’t think would have it, such as salad dressings, pickles, gravies, and some processed foods.
Your doctor should refer you to an experienced nutritionist who can teach you all about eating gluten-free. You can also visit the Celiac Disease Foundation for more advice and information.
Adults who are newly diagnosed with celiac disease may need a bone density test to see if they’ve lost bone density from having undiagnosed celiac.
On average, the inflammation from celiac takes about 3 years to fully heal after starting a gluten-free diet, but your symptoms should start to improve within several weeks.
If you have a skin rash, your doctor might prescribe dapsone, an antibiotic that also has an anti-inflammatory effect. In almost all cases, your doctor will recommend you take a daily (gluten-free) multivitamin.
What happens when you have celiac disease?
Gluten—a protein found in wheat, rye, barley, and their derivatives—causes your body to launch an immune response. Small bits of gluten attach to immune cells in the small intestine and set off a chain reaction of events. This causes the gut to become inflamed.
The inflammation causes damage to the lining of the small intestine. The damaged lining cannot absorb vitamins and minerals as well, causing you to be deficient in certain nutrients. It also releases more water, which causes the diarrhea and abdominal pain.
How does celiac disease affect children?
Infants and children can have celiac disease. Children tend to have more symptoms of the digestive tract including diarrhea, oily stool (called steatorrhea), vomiting, belly pain, constipation, and weight loss. They may also have defects in tooth enamel that show up as discolored or pitted teeth.
Early diagnosis is important in kids. Because they are still developing and growing, the effects of celiac disease can cause long-term issues, including not growing to full height and developmental delays. Any child who is not growing well, has developmental delays, or chronic diarrhea should be evaluated for celiac disease by a pediatrician as soon as possible.
If you think you might have celiac disease, call your doctor. There is a blood test that can detect certain antibodies (immune system proteins). If you test positive, you will be referred to a gastroenterologist (specialist in the digestive tract), who will do more tests to confirm the diagnosis.
The gastroenterologist will perform an upper endoscopy, which can be done in an outpatient surgical center. While you are sedated, a thin flexible tube with a tiny camera at the tip is inserted into your mouth and down your throat. The doctor can examine your esophagus, stomach, and small intestine. And take several small tissue samples (biopsies) from your small intestine. The tissues will be looked at under a microscope to confirm a diagnosis.
It is very important that you don’t stop eating gluten until after you’ve completed your testing (both blood tests and endoscopy) for celiac. The test may not detect the disease if you are already avoiding gluten when tested.
Going out to a new restaurant can be anxiety-inducing if you have celiac disease. There is at least one company that is developing a device that can test bits of your food, in real-time, to see if it contains gluten. This could serve as a helpful back-up for patients with celiac disease. —Dr. Pont
You will need a follow-up appointment with your doctor in 3 to 6 months. They will review your diet, check on your symptoms, and request blood testing. The testing will help make sure you are successfully avoiding foods containing gluten. It also will follow-up on any vitamin deficiencies or other issues detected at the initial visit.
Your doctor will then schedule follow-up appointments at 3 to 6 month intervals depending on your progress.
You may need to have a repeat endoscopy in 2 to 3 years (or sooner if symptoms persist) to be sure your intestinal lining is healing.
Dr. Pont is currently a fellow in Gastroenterology at New York Presbyterian Hospital/Columbia, where he also completed his residency in Internal Medicine. Dr. Pont received his medical degree and PhD at the New York University School of Medicine. He earned his BS in Biological Systems Engineering at the University of Nebraska-Lincoln.