Getting Diagnosed with Celiac Disease

Once thought to be extremely rare, celiac disease is now believed to affect an estimated one percent of the population, only a fraction of whom receive a proper diagnosis. Celiac disease is an autoimmune disorder, meaning the immune system actively attacks the body’s own living tissue. In this case, the immune system targets the villi, the lining of the small intestine, hindering the absorption of nutrients. This autoimmune reaction occurs when the body is introduced to gluten, a protein found in wheat, rye, barley and other grains, and a common staple in many diets. Celiac disease has hundreds of symptoms, making it difficult to identify. In fact, an estimated 83 percent of celiac sufferers are not accurately diagnosed.

Noticing the Signs and Symptoms

There are many different signs that an adult or child may be suffering from celiac disease. Because celiac disease affects the body’s ability to absorb nutrients properly, the symptoms can manifest in a variety of ways, and may vary greatly from person to person and even day to day. Below are the most commonly reported symptoms of celiac disease:

Chronic diarrhea (lasting longer than a couple weeks)

  • Mouth sores
  • Nausea
  • Stomach pain
  • Back pain
  • Muscle spasms
  • Burning or itchy skin or scalp
  • Foggy brain
  • Unexplained irritability and mood swings, including anxiety
  • Unexplained anemia or other signs of malnutrition

Many celiac symptoms are similar to those of food allergies or other issues, including Crohn’s disease, irritable bowel syndrome (IBS) or an unrelated intestinal infection. If you or someone you know is experiencing any of the above symptoms, it’s important to be evaluated by a professional in order to establish a proper diagnosis.

The Steps of Diagnosis

If you think you might have celiac disease, the first step is to schedule blood tests with your doctor. In order for the blood tests to be accurate, however, there must be gluten present in the blood stream. Because of this, although it may seem counter-intuitive, it’s necessary to include gluten-containing items in the daily diet for the duration of the screening process. If the patient has already started a gluten-free diet plan, then doctors will recommend a “gluten challenge” where gluten is reintroduced for the sake of proper testing.

If any of the blood tests come back positive, the doctor will more than likely recommend the next step of diagnosis, which is an endoscopy and biopsy of the intestines. Even if the blood tests come back negative, an individual showing strong symptoms may still have celiac disease, as the tests are somewhat limited and results can vary greatly, and so a doctor may still insist that further testing is necessary.

During the endoscopy, a small tube with a camera is placed down the patient’s throat to look for any sign of damaged villi—the hallmark of celiac disease. The same instrument will also take small samples, if necessary, to complete a laboratory biopsy of the damaged tissue.

The Pros and Cons of Getting Tested

If you think you may have celiac disease, the idea of getting diagnosed may seem daunting. The screening process itself can be time consuming and expensive. In addition, the actual methods of diagnosis can be intimidating and invasive, and the results are not always conclusive. For the blood tests to work, one must continue to ingest gluten on a regular basis, and for someone who has noticed sensitivity to gluten, this prospect can be very discouraging, as reactions to gluten can be both painful and debilitating.

While the treatment for celiac disease is simply the strict avoidance of gluten and does not require any medication or doctor visits, getting a diagnosis is still important. Celiac disease is very similar to Crohn’s disease, IBS and other serious issues, and the treatment of each respective issue is vastly different. Because celiac disease is an autoimmune disorder, and all autoimmune disorders are genetic, a proper diagnosis can also open the doors to proper awareness and healthier living for your extended family, parents and children.


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