Celiac May Be Grossly Underdiagnosed

B.S. Dietetics, Dietitian, Health Professional
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Celiac disease (CD) is a condition in which the immune system overreacts to the ingestion of the protein gluten. In the United States, approximately one in every 133, or an estimated total of two million people, have CD. Left untreated, CD can cause permanent damage in the GI tract, so it is important that patients with the condition get an accurate diagnosis and follow a gluten-free diet. Problem in hand, Mayo Clinic researchers sought to better determine the incidence of CD in the United States.

What did the study determine?The 2012 study published by Mayo Clinic researchers in the American Journal of Gastroenterology examined almost 8,000 people ages six and older who participated in the National Health and Nutrition Examination Survey. Researchers found that CD was present in 35 of the participants, with 29 being unaware of their condition. Extrapolating these results translates to 1.8 million Americans with CD — 1.4 million of those being completely unaware that they have it.** Why is CD hard to diagnose?Part of the reason that CD can be hard to diagnose is that the symptoms can mimic many other conditions. Symptoms can include abdominal pain and bloating, chronic diarrhea, vomiting, constipation, weight loss, fatigue, and pale or foul-smelling stools**. Some people with CD have no symptoms at all. This has lead physicians to categorize CD patients into three groups: classic CD, non-classical CD, and silent (asymptomatic) CD.

In classic CD, patients show all of the signs and symptoms of malabsorption. They have diarrhea, steatorrhea (pale or foul-smelling, fatty stools), weight loss, or growth failure in children. A** non-classical CD** patient may have mild symptoms with no clear signs of malabsorption. These patients can also present with symptoms that may seem unrelated to CD, such as iron-deficiency anemia, chronic fatigue, chronic migraine, peripheral neuropathy, elevated liver enzymes, reduced bone mass or increased fracture, and vitamin deficiencies, among other symptoms.

Patients with silent or asymptomatic CD will not complain of symptoms, but will still show damage or atrophy of the intestine on examination. Once on a gluten-free diet, these patients often report feeling better and experiencing better health.

It is important to remember that even when celiac patients do not exhibit outward symptoms, the ingestion of gluten can still damage the intestine. That is what makes getting an accurate diagnosis key.** How do you receive an accurate diagnosis?One of the keys in determining your risk for developing CD is to know your family history**. Having a first-degree relative (parent, sibling, or child) with CD gives a person a 1 in 10 chance of developing the disease and should prompt screening for celiac even when no symptoms are present. If you have a second degree relative (aunt, uncle, cousin) with the disease, your odds are one in 39 of developing the disease. So, if you are having symptoms, be sure your physician knows your family history.

If you have an associated autoimmune disorder (type 1 diabetes, autoimmune thyroid disease, autoimmune liver disease, Down syndrome, Turner syndrome, Williams syndrome, and selective immunoglobulin A (IgA) deficiency) you are also at a higher risk for developing CD. Discuss with your physician if and when you should be screened for CD.

Anyone with the symptoms of CD, especially when symptoms persist over time or other conditions have been ruled out, should discuss being screened for CD with their physician. The Celiac Disease Foundation’s Symptoms and Conditions Checklist can be a great tool to bring to your physician to further the discussion.

The good news… treatment by removing gluten from the diet resolves the symptoms for most patients.** See More Helpful Articles:**

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