Undiagnosed Celiac Disease

Irene Berman-Levine, PhD, RD
October 15, 2004

This is the ninth article we've published by Dr Irene Berman-Levine. This time, it's taken from one of her newsletters, "Dr Irene's Nutrition Tidbits". You can subscribe to this newsletter by clicking on: http://www.healthandage.org/Home/gm=22 Robert Griffith, Editor.

Sometimes you know something is not right but no one can tell you what's wrong. Imagine a life with chronic diarrhea, gas and/or abdominal pain. Another person may have chronic anemia, irritability or depression. Another just can't seem to gain weight or get rid of a rash. All of these individuals may suffer from the same problem: celiac disease.

Don't diagnose yourself with celiac disease because you have any of these symptoms. They are common to many problems. The purpose of this article is to open a dialogue between you and your health professional. Many people have celiac disease that is not diagnosed. In fact, the average time between symptoms and diagnosis is 10 years! One reason is that many people (including doctors) assume celiac disease is relatively rare.

It is NOT rare and is considerably under-diagnosed, according to an independent consensus panel report just released by the National Institutes of Health (NIH). The panel confirms evidence that celiac disease is present in 0.5% to 1% of the U.S. population, ten times higher than previous estimates. This means it may affect 3 million Americans.

What is celiac disease?

So what is celiac disease? It's characterized by damage to the intestine caused by a reaction to a protein (gluten) found in common grains. These include wheat, rye, barley, and possibly oats. This means every time someone with celiac disease eats a sandwich on regular bread, a bowl of most cereals, many salad dressings or even a cookie, they are causing damage to their intestinal tract. In some individuals the damage becomes so severe they cannot absorb nutrients in food and they become malnourished. For others, damage may cause symptoms that are more difficult to diagnose, such as chronic anemia, osteoporosis or a rash.

How is it diagnosed?

Diagnosis is usually a two-step process. A blood test can measure levels of antibodies to gluten. IgA tissue transglutaminase (tTG) and IgA anti-endomysial (EMA) antibodies are the most specific and sensitive for celiac disease but other antibody tests may also be needed. If the blood test is positive, a biopsy of the small intestine will help determine if it is celiac disease.

Treatment

Treatment is primarily by strictly following a gluten-free diet. Individuals who suspect they may have celiac disease should NOT start on a gluten-free diet before they have a blood test to look for antibodies. The patient must be eating at least 4 slices of bread daily, or the equivalent, for several months in order for the antibody tests to be positive. Otherwise, you may stop producing antibodies to the gluten and get false negative results.

Differences between USA and other countries

Many European countries are more aware of celiac disease. In Italy celiac disease is reported to be as common as 1 in 250 people. It is so common that all children are screened by age 6 in order to detect individuals who have celiac disease with no symptoms. In Ireland about 1 in 300 people have celiac disease.

We seem to ignore celiac disease in the United States. It's estimated that only one in 4,700 people are actually diagnosed with celiac disease. Yet according to evidence researched by the NIH report, prevalence may be as high as 1 in 105 people!

Why is celiac disease not diagnosed in the United States? Reasons include:

• symptoms can be attributed to many other problems,
• many doctors are not knowledgeable about the disease,
• only a handful of U.S. laboratories are experienced in testing for celiac disease, and
• there's little financial incentive to research celiac disease.

The last one is my pet peeve. It's very difficult to get anyone to pay attention to diseases that are primarily treated by diet. Big companies, including drug companies, will not profit by its diagnosis and treatment. Thus, there is less incentive to provide money to support research. This means you and I have to yell and scream to bring attention to the need to fund research on diet and health.

I am excited about the NIH panel results but I am concerned that it did not receive much attention in the news. (Thank you to a few magazines, like TIME, which did mention the conference). New information on celiac disease has got to be in the news repeatedly to get attention from consumers with possible symptoms, and from health care providers. If physicians don't recognize when to test for the disease, patients are going to suffer needlessly.

Increasing awareness in the USA

The NIH panel found that increasing physician awareness of the various manifestations of celiac disease and appropriate use of available testing strategies may lead to earlier diagnosis and better outcomes for celiac patients. So assuming (and that is a BIG assumption) that the correct individuals finally get diagnosed, the panel identified six elements essential to treating celiac disease:

      C - Consultation with a skilled dietitian,
      E - Education about the disease,
      L - Lifelong adherence to a gluten-free diet,
      I - Identification and treatment of nutritional deficiencies,
      A - Access to an advocacy group, and
      C - Continuous long-term follow-up.

The only treatment for celiac disease is to follow a gluten-free diet. While improvement in some symptoms may begin within days, it will take at least 3-6 months (sometime up to 2 years) for the intestines to regain their health. Eating any gluten, even in small amounts like bread coating on chicken, will cause damage to the intestines.

The gluten-free diet

Following a gluten-free diet is not easy, but it can be done. The diet is a lifestyle that includes more than avoiding wheat (including spelt, triticale, and kamut), rye, barley, and possibly oats. Because commercial products can constantly change their ingredients, it's important to be an avid label reader. Even preservatives and stabilizers found in processed food, medicines, and mouthwash may contain gluten.

Diets can be nutritionally balanced and there are certain "safe" foods. For example, plain meat, fish, rice, fruits, and vegetables do not contain gluten, so people with celiac disease can eat as much of these foods as they like. Appropriate substitutions can make the diet more palatable. For example, instead of wheat flour, people can use potato, rice, soy, or bean flour. Or, they can buy gluten-free bread, pasta, and other products from special food companies.

Consultation with a skilled dietitian is the first item on the agenda when diagnosed because the gluten-free diet is so complex. Hidden sources of gluten make it challenging to eat in restaurants or parties, but it can be done. Because I can't begin to provide adequate detail in one article, a dietitian, several good references and joining support groups are suggested if you need to follow a gluten-free diet.

Source

• I Berman-Levine PhD, RD. "Dr Irene's Nutrition Tidbits" Newsletter published by HealthandAge.com. Volume V Issue No 17, July 2004.

Related Links
Evidence Report on Celiac Disease
Celiac Disease Foundation
NIH: Celiac Disease
The Gluten-Free Diet

Related Books
Presenters and agenda of the NIH consensus conference can be viewed at http://consensus.nih.gov/cons/118/118cdc_intro.htm

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