Celiac disease is a chronic, autoimmune condition that affects the small intestine when gluten is ingested.
Gluten is a protein found in wheat, barley, rye and foods made with these grains such as bread and pasta.
When a person with celiac disease ingests gluten, an immune reaction occurs in the small intestine. With repeated exposure, the lining of the small intestine becomes damaged and unable to appropriately absorb nutrients. This can lead to diarrhea, fatigue, weight loss and serious complications such as anemia and malnutrition.
It is estimated that celiac disease affects 2 million people in the US, though many people remain undiagnosed. Celiac disease is also known as celiac sprue, nontropical sprue, and gluten-sensitive enteropathy and is a lifelong condition that requires a gluten-free diet to manage symptoms.
Signs and symptoms of celiac disease can vary significantly from person to person. Some people may present with mild to severe symptoms, while others remain asymptomatic.
Adult digestive and non-digestive symptoms of celiac disease may include:
· Recurring abdominal bloating and pain
· Chronic diarrhea/constipation
· Liver and biliary tract disorders
· Weight loss
· Pale, foul-smelling stool
· Iron-deficiency anemia
· Pain in the joints
· Tingling numbness in the legs
· Pale sores inside the mouth
· Skin rash (dermatitis herpetiformis)
· Tooth discoloration or loss of enamel
· Unexplained infertility, recurrent miscarriage
· Osteopenia (mild) or osteoporosis (more serious bone density problem)
Children with Celiac Disease
In children with celiac disease, digestive symptoms are more common than in adults and may include:
· Nausea and vomiting
· Chronic diarrhea
· Swollen belly
· Pale, foul-smelling stools
When nutrients are not properly absorbed in children with celiac disease, other conditions may result, such as:
· Failure to thrive (for infants)
· Damage to tooth enamel
· Weight loss
· Short stature
· Delayed puberty
· Learning disabilities
Non-celiac gluten sensitivity or a wheat allergy are not celiac disease, but may cause similar symptoms. Testing is required to confirm a celiac disease diagnosis.
Causes and Risk Factors
Celiac disease affects both men and women, though women more often are diagnosed with the disease. The mean age at diagnosis is 38 years, but the disease can occur at any age.
Genetics, consuming gluten, and other potential factors may contribute to developing celiac disease, though the exact cause is still unknown.
Celiac disease often occurs in people who have a family history of the disease.
People with a parent, child, and/or sibling with celiac disease have a 1 in 10 risk of developing celiac disease.
Specific genetic proteins, such as the human leukocyte antigen (HLA), are linked to many autoimmune diseases. Research has shown that people with the HLA-DQ2 or the HLA-DQ8 gene are at risk for developing celiac disease.
In people with celiac disease, gluten will kick off an immune response that over time damages the small intestine.
People with celiac disease may also have other autoimmune conditions such as:
· Thyroid disease or liver disease
· Type 1 diabetes
· Rheumatoid arthritis
· Sjögren’s syndrome
· Autoimmune liver disorders
Tests and Diagnosis
Your healthcare provider will recommend several tests in order to confirm a diagnosis of celiac disease. These may include
· Serologic tests that measure levels of specific antibodies in your blood and may initially indicate celiac disease. Serologic testing is less accurate in children under 5 years. The blood test should also be done prior to starting a gluten-free diet to ensure accurate results.
· Small bowel biopsy is done through an endoscopy procedure during which a thin tube with a small camera is inserted through the mouth to see the small intestine and a piece of tissue is removed. Children with symptoms of celiac disease and high levels of antibodies in serologic testing may not require a biopsy.
· Genetic testing may be recommended if other test results are not conclusive regarding the diagnosis of celiac disease.
The only current treatment for celiac disease is a strict, lifelong gluten-free diet.
Foods that need to be avoided include:
• Wheat (including bulgur, farro, wheatberry, durum and others)
Other overlooked foods that often contain gluten are (9):
• Imitation bacon
• Imitation seafood
• Coating mixes
• Commercial cereals
• Processed meats
• Communion wafers
For people with celiac disease, following a gluten-free diet can be complex. Your healthcare provider may recommend a registered dietician to help you navigate your treatment plan for celiac disease.
A dietician will help to develop a healthy gluten-free diet and also.
· Understand food and product labels to avoid gluten
· Design gluten-free meal plans
· Make overall healthy and nutritious decisions
Gluten may also be found in some medications, vitamins and supplements. Be sure to consult with your healthcare provider and pharmacist before starting any medications. Gluten may also be found in lip balm, lipstick and other cosmetics.
Removing gluten from a person’s diet will typically help and prevent the symptoms of celiac disease. The small intestine will also begin to heal, though this can take up to several years in adults versus approximately 6 months for a child.
Regular medical follow-up visits with a healthcare provider are recommended for people with celiac disease.
Additional tests such as blood work and biopsies may be needed as well. For any nutritional deficiencies, your healthcare provider may also recommend vitamin and mineral supplements.
For severe inflammation of the small intestine, people with celiac disease may also take steroids. Dapsone may be also be prescribed to help treat skin rash (dermatitis herpetiformis) in people with celiac disease.
If symptoms continue while a person is following a gluten-free diet, follow up with a healthcare provider and dietitian are needed. Additional tests may be done to explore other health conditions such as:
· Irritable bowel syndrome
· Lactose intolerance
· Microscopic colitis
· Problems with the pancreas
· Small intestinal bacterial overgrowth
In addition, a dietician will help to eliminate all potential sources of gluten- including hidden and small amounts - from a person’s diet.
In some cases, the small intestine will not heal (refractory celiac disease), and your healthcare provider may recommend more specialized treatment.
Long term health complications
Celiac disease can potentially lead to significant long term complications.
People with celiac disease have a greater risk of developing coronary artery disease, and small bowel cancers.
If celiac disease is not treated, additional health conditions can develop, such as.
· Type I diabetes
· Multiple sclerosis
· Dermatitis herpetiformis (an itchy skin rash)
· Infertility and miscarriage
· Neurological conditions like epilepsy and migraines
Living with Celiac Disease
Celiac disease can be a complex and overwhelming lifelong condition to manage. Following a gluten-free diet can be challenging for people with celiac disease. A dietician can help with learning to identify which foods to avoid at home or while eating out. Food manufacturers, grocery stores and restaurants have started to incorporate gluten-free food choices as well.
Many food such as eggs, fruits, vegetables, meats, fish, poultry and lentils do not contain gluten and contribute to a healthy eating lifestyle.
In addition, grains and starches allowed in a gluten-free diet include:
· Gluten-free flours (rice, soy, corn, potato, bean)
· Pure corn tortillas
· Wild rice
People with celiac disease should seek guidance from their healthcare providers, dietitians, patient groups and other support networks to help manage this condition.
· Children’s Hospital of Philadelphia. https://www.chop.edu/conditions-diseases/celiac-disease/health-resources
· Celiac Disease Foundation. https://celiac.org/
· Beyond Celiac. https://www.beyondceliac.org/celiac-disease/
· National Celiac Association. https://nationalceliac.org/
· American Celiac Society Dietary Support Coalition. http://www.americanceliacsociety.org/
Author: Bindu Muttana
Editor: Kaitlyn Longstaff
Public Health Scientist: LaCher E-W, MPH
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