May is Celiac Awareness Month, dedicated to increasing public knowledge about Celiac Disease (CD). This observance addresses the high rate of undiagnosed cases of this serious, lifelong autoimmune condition. Recognizing the symptoms and understanding CD is important for improving health outcomes for the millions of people affected.
Understanding Celiac Disease
Celiac Disease is an autoimmune disorder, distinct from a food allergy or intolerance, triggered by gluten ingestion. Gluten is a protein found in wheat, rye, and barley; its primary reactive component is a peptide called gliadin. When a person with a genetic predisposition consumes gluten, gliadin peptides pass through the small intestinal lining.
Once inside the tissue, the enzyme tissue transglutaminase modifies the gliadin, creating a highly reactive substance. This modified gliadin activates T-cells, which mistakenly attack the body’s small intestinal tissue. The sustained immune response leads to villous atrophy, the flattening and destruction of the small, finger-like projections called villi.
Since the villi are responsible for absorbing nutrients, their destruction leads to malabsorption and malnutrition. This damage causes the wide range of symptoms and long-term health complications associated with the disease. Without a strictly maintained diet, the immune system continues to attack the intestinal lining, preventing it from healing.
The Purpose of Awareness Month
The goal of Celiac Awareness Month is to reduce the diagnostic delay many individuals face. Up to 83% of Americans with the condition are estimated to be undiagnosed or misdiagnosed. This results in an average waiting period of six to ten years before a correct diagnosis is made.
The month provides a platform to educate the public and healthcare providers about the disease’s varied presentation. Broader knowledge encourages people to seek testing and helps clinicians consider CD even in the absence of classic symptoms. Raising awareness also supports advocacy efforts for continued research into non-dietary treatments and better screening methods.
Recognizing Signs and Diagnosis
Celiac Disease symptoms are wide-ranging; over half of adults present with issues that do not involve the digestive system. While classic symptoms include chronic diarrhea, abdominal pain, and bloating, many people experience atypical manifestations. These atypical signs result directly from nutrient malabsorption caused by the damaged intestinal villi.
Atypical presentations include:
- Iron-deficiency anemia that does not respond to iron supplements.
- Dermatitis herpetiformis, a blistering, intensely itchy skin rash.
- Reduced bone density, such as osteopenia or osteoporosis.
- Chronic fatigue.
- Elevated liver enzymes.
- Neurological issues like headaches.
Diagnosis typically follows a two-step process requiring the patient to be consuming gluten. The first step is a serological blood test, the tissue transglutaminase IgA (tTG-IgA) antibody test. A total IgA level is checked simultaneously, as an IgA deficiency is common in CD patients and can cause a false negative result.
If the blood test is positive, the diagnosis is confirmed by an upper endoscopy with a small intestinal biopsy. During this procedure, a physician takes tissue samples to examine and grade the damage to the villi. Consuming gluten—such as the equivalent of three slices of wheat bread daily for several weeks—before testing is absolute, as removing it too soon will cause the intestine to heal and lead to inaccurate results.
Navigating the Gluten-Free Diet
For individuals with Celiac Disease, a gluten-free diet (GFD) is the only effective treatment. A strict GFD allows the small intestine to heal, restoring nutrient absorption and alleviating symptoms. This diet requires the elimination of all foods containing wheat, barley, and rye, including their derivatives.
Adherence to the GFD involves careful label reading, which is made easier by federal regulations. In the United States, a food labeled “gluten-free” must contain less than 20 parts per million (ppm) of gluten. This low threshold is considered safe for most people with CD and applies to naturally gluten-free products and specialized substitute foods.
A challenge in maintaining the diet is avoiding cross-contamination, the unintentional transfer of gluten to a gluten-free food. This risk is high in shared kitchen environments, requiring dedicated or thoroughly cleaned surfaces and utensils. For example, using the same toaster or cutting board for regular and gluten-free bread can transfer enough gluten to cause a reaction.
Cooking methods also present cross-contamination risks, such as submerging gluten-free pasta in water previously used to boil regular pasta. Individuals must be aware of gluten in products like sauces, marinades, modified food starch, and malt flavoring. A lifelong commitment to this vigilant lifestyle is necessary to prevent intestinal damage and long-term health complications.