Celiac Disease Without Symptoms:Is the Gluten-Free Diet Really Necessary?

It may surprise you to learn that researchers cannot conclusively answer this question, for several important reasons. But before you jump for joy and order a pizza, there is a lot of evidence that tells us those with asymptomatic celiac disease need to follow a lifelong gluten-free diet.

First, it’s important to mention that there are a lot of celiacs out there who say they have no symptoms, but when asked, will report they have iron deficiency anemia, minor GI complaints or osteoporosis. These are symptoms of celiac disease, despite the fact that they might not cause symptoms when controlled with iron therapy or medications. When we talk about asymptomatic celiac disease, we are identifying a population of patients that have truly have no symptoms directly related to celiac disease, or autoimmune disorders or other related conditions, or any complications like anemia or osteoporosis.

Second, it is important to note that researchers know a lot about the “natural history” of symptomatic celiac disease in humans, because the condition has been studied for three or four decades. However, with the identification of transglutaminase as an autoantigen to anti-endomysium antibodies in 1997, work began on a blood test to identify this autoantigen in patients who may have celiac disease. This scientific advance opened the door to a new “class” of celiac patient: the individual with few symptoms (or no symptoms at all) who tested positive for tTG. The human-based tTG test was made available in the past five years, providing a highly sensitive and specific test with which to identify individuals who may be exhibiting an autoimmune response to gluten.

Like the tree, falling in the forest without anyone to hear it fall, asymptomatic celiac disease went “unheard” for decades. Scientists now faced an important question:

How can an individual have celiac disease with no symptoms or complications?
Studying this question proves difficult, because of the ethical standards that all researchers must follow when conducting studies involving human beings. Individuals with asymptomatic celiac disease on a gluten-free diet cannot be asked to discontinue a therapy which may help them. Further, physicians are taught to “first do no harm” and in the absence of complete medical knowledge, but knowing the effectiveness of the diet for people with symptomatic celiac disease, must instruct patients to follow the diet.

There are two schools of thought about asymptomatic celiac disease. One school believes that asymptomatic celiac disease is a different disease than the variant which causes symptoms. Therefore, studies need to be conducted to determine if or when symptom-free celiac disease turns into symptomatic celiac disease. Based on an understanding of the natural history of this form of celiac (in other words, studying people with asymptomatic celiac disease who are not receiving treatment) recommendations based on treatment can be formulated. Studies would have to be carefully formulated to address important questions in a secondary manner, given the ethical challenges mentioned above.

The other school of thought believes that asymptomatic celiac disease is part of a spectrum of celiac disease, known as silent celiac disease. Patients with silent celiac disease have a positive antibody test, and if biopsied, will have a confirmed diagnosis of celiac disease. However, these patients have no symptoms. These physicians and researchers have shown in the medical literature that those who know they have celiac disease but do not follow the diet (or follow it loosely) have a worse outcome than those celiacs who follow the diet closely. Based on this research, these physicians recommend the diet for any celiac they diagnose.

Good news for banana babies

One population of patients that provides a great deal of insight into the question of how to treat symptom-free celiac disease is banana babies. Banana babies are children in WWII who were found to have celiac disease.

At that time, physicians believed that the condition was curable. Parents were instructed to feed their children chicken, rice and bananas, often for several years.

When their symptoms went away and their health returned, these children were started back on a diet containing gluten. Often these children, in their 50’s and 60’s, develop symptoms again and are re-diagnosed with celiac disease, often with notable complications.

An important Italian study by Ciacci, Iovino, et al., published earlier this year, compared the health of individuals diagnosed as children who consistently followed the diet throughout their lives, with children who were put on the diet for only a few years and considered cured. These populations were compared with a group of recently diagnosed adults not yet on the gluten-free diet.

These investigators found that 41% of the patients who had been following the gluten-free diet from their diagnosis as children had intestinal damage or a positive antibody test, showing poor compliance.

The group of patients who had not yet been on the gluten-free diet had higher rates of thyroid disease, arthritis, dental enamel defects, infertility, low birth weight babies, osteoporosis and osteopenia.

Interestingly, while those who were only on a gluten-free diet for a short time as children were found to have complications experienced by those who were undiagnosed, these complications were somewhat less frequent. This led the investigators to conclude that the gluten-free diet had a protective effect in children who followed it only for a few years. This news is reassuring for many people in their forties, fifties and sixties who are often shocked when they are re-diagnosed and put back on the diet.

It also showed that in a population of asymptomatic celiacs (the banana babies considered cured) that celiac disease continued to cause intestinal damage and serious complications for those eating a gluten diet.

Further evidence

A study published in the Lancet in 2001 from Corrao and colleagues found that people with celiac disease who followed the diet informally, when compared to those who strictly followed the diet, experience more complications and are more likely to die before their brother or sister without celiac disease.

In addition, Alessandro Ventura and his colleagues published a study in 1999 that found that the duration of gluten exposure to be linked with the prevalence of autoimmune disorders in people eventually diagnosed with celiac disease.

Both of these studies show that underlying celiac disease, either symptomatic or asymptomatic lead to adverse outcomes when not treated with a complete gluten-free diet.

The bottom line

Until we know for sure, people who are diagnosed with asymptomatic celiac disease should carefully follow a gluten-free diet. There is compelling evidence that asymptomatic celiac disease, if not treated with the gluten-free diet, could cause symptoms and complications later in life.

In a study published last year, O’Leary and collegues found that banana babies were most likely to follow the diet if it meant their symptoms would go away. The prospect of avoiding complications later in life, while serious, was not a motivating factor for these patients.

All celiac patients eventually become healthy and for the most part, without symptoms related to the diet. The challenge is to stick with the diet, despite feeling really good. Most of us can understand that cholesterol is bad for our hearts, even when we cannot feel it causing a narrowing of the arteries. Given a diagnosis of high cholesterol, some patients understand the need to avoid fast food cuisine to manage this condition, even in the face of few symptoms. This is not the case with many people who have asymptomatic celiac disease, some of whom do not really believe that they are ill. However, even people with high cholesterol resort to pharmaceutical treatments when their ability to follow a low cholesterol diet wanes.

O’Leary and her colleagues also found that 20% of the patients who were very compliant with the diet had symptoms of clinical depression. When analyzing the data further, the degree of depression was correlated with the degree of compliance.

Helping each other

Individuals with asymptomatic celiac disease are not the only group of celiac disease who has difficulty with compliance to the diet. The challenge for the celiac community is to find ways to support its members as they make healthy food choices and to reinforce the importance of doing so.

Written By Michelle Melin-Rogovin, Executive Director

University of Chicago Celiac Disease Program

Michelle Melin-Rogovin, Executive Director, University of Chicago Celiac Disease Program