Celiac disease is an immune reaction to eating gluten, a protein found in wheat, barley and rye.
An estimated 1 in 100 people globally suffer from celiac disease, a serious autoimmune disease that causes ingested gluten to damage the small intestine.
Gluten is a specific protein found in wheat, barley and rye. For those with celiac disease, gluten causes the body’s immune system to attack the small intestine and cause damage to villi — small finger-like projections that line the small intestine — that help the body absorb nutrients.
“Celiac disease is an immune reaction to eating gluten. Over time, this reaction causes damage to the lining of your small intestine and prevents it from absorbing some nutrients such as iron and calcium,” INTEGRIS Health Gastroenterologist Dr. Arun Sachdev, MD, says.
Although commonly confused with one another, a gluten intolerance is a separate disorder from celiac disease. Non-celiac gluten intolerance can cause many of the same symptoms as celiac but does not involve an immune reaction and damage to the small intestine.
While celiac disease is still being researched, it is known to be hereditary. If you have a close relative such as a parent or sibling with celiac disease, you have a 1 in 10 chance of developing it yourself. Yet, so many people may be at risk without knowing it. It is estimated that roughly 2.5 million Americans may not even know they have celiac disease, putting them at risk for long-term health problems.
Celiac disease can be managed and treated, but first, you need to know if you are one of the millions who have the disorder.
Believe it or not, celiac disease was first identified 8,000 years ago. Greek physician Aretaeus of Cappadocia identified the disease in 1 A.D., but it was first clearly described in 1888. However, it wasn’t until the 1950s when Margot Shiner biopsied the distal duodenum that major progress in researching celiac disease was made. That biopsy connected the dots between gluten and damage to the small intestines.
By the 1960s, the medical community was aware that gluten causes celiac disease, and by the 1990s, it was widely accepted that celiac disease is an autoimmune disorder.
The signs and symptoms of celiac disease are varied, and children may experience different symptoms than adults do. Some of the common symptoms to watch out for in adults include the following.
Other signs and symptoms can also include:
Symptoms in children with celiac disease may range from swollen “potbellies,” gas, foul-smelling pale feces, nausea or vomiting to constipation or chronic diarrhea.
“If left untreated in children, celiac disease can lead to failure to thrive, weight loss, anemia, irritability, short stature and other issues,” Dr. Sachdev says. “In adults, untreated celiac can lead to malnutrition, osteoporosis, infertility/miscarriage, anemia and even small bowel cancer.”
Celiac disease is known to be genetic, so if a close family member has celiac disease, others in the family have a higher chance of having it as well. Celiac disease is also more common in those with Addison’s disease, type 1 diabetes, Hashimoto's disease, Down syndrome, Turner syndrome and microscopic colitis.
Left untreated, celiac disease can result in malnutrition (especially in children), the weakening of bones, infertility, lactose intolerance, miscarriage, cancer and neurological disorders such as seizures or damage to the nerves of the hands and feet.
While many people may not even know they have celiac disease, blood tests can be used to easily diagnose it. Tests used to diagnose celiac disease may include the following.
If test results indicate celiac disease, your physician may order an endoscopy to confirm. An endoscopy uses a tube to guide a tiny camera down your throat to look at the small intestine and take a biopsy to test for villi damage.
A capsule endoscopy, in which a camera inside a pill-sized capsule is swallowed, may also be used. The camera then takes pictures of the digestive tract as it moves through the body.
If symptoms include a blistered, itchy rash, your doctor may also test the skin tissue to determine if the rash is dermatitis herpetiformis, which can be caused by celiac disease.
Your physician will be the best person to determine your treatment for celiac disease, but the most accepted treatment is a strict gluten-free diet that forbids wheat, rye and barley.
Celiac disease patients must adhere to this gluten-free diet for their entire lives. Your physician may refer you to a dietary specialist who can help develop the proper gluten-free diet since even small bits of bread or wheat can trigger small intestine damage. Many restaurants now accommodate those with a gluten allergy by offering gluten-free versions of regular menu items.
Gluten is hidden in not only food but also other products such as certain vitamins, over-the-counter medications, lipsticks, toothpaste and even communion wafers and envelope glue. It’s important to check the ingredients of medications and products you use.
By following a gluten-free diet the small intestine to eventually heal. While the inflammation recedes, your doctor may also recommend supplements to address nutritional deficiencies or medications to help if your intestines have been severely damaged.
For those with refractory celiac disease, in which symptoms persist despite strict adherence to a gluten-free diet, treatment is trickier. Since the intestine will likely never heal, specialized treatment will be necessary. Currently, no proven treatment for refractory celiac disease exists.
While speaking to your primary care doctor is an important first step if you think you may have celiac disease, you may also be referred to a gastroenterologist that specializes in conditions involving the digestive system and a dietician who can help you adjust to a new eating lifestyle.
If any neuropathy (nerve damage) has occurred as a result of celiac disease, you may also be referred to a neurologist. A dermatologist may also be called in to treat any skin irritation due to celiac disease.
“The gut can heal itself by adhering to a strict gluten-free diet. Involving a dietician along with your gastroenterologist can be helpful to review your diet and medications,” Dr. Sachdev says. “Don’t worry. It is common to have many specialists if you are diagnosed with celiac disease, especially in the beginning.”
Do not self-diagnose and try a gluten-free diet on your own. It’s always best to let your doctor determine the best course of action for testing and treatments.
