Nothing short of my physician’s explicit mandate, which swiftly followed a diagnosis of dermatitis herpetiformis (DH) confirmed by biopsy, could have induced me to adopt a gluten-free diet. Even after receiving my doctor’s solemn affirmation that he would allow me to take Dapsone for a maximum of six months, after which I would have to control the symptoms of DH by diet alone, I emphatically declared to my husband, “I will not go on that diet!” However, the intense itching caused by DH was beyond my endurance, and with my husband’s encouragement, I grudgingly began the complicated, restrictive diet. Before long, the fiercely pruritic rash vanished, gastrointestinal symptoms disappeared that for many years I had excused as being normal for my body, and I eventually became enthusiastically committed to the diet that I had resisted so vehemently.

Remarkably, the diet which I once shunned is now being called a “food trend.” In January 2008, Janet Helm wrote in the Chicago Tribune, “Just when bread was starting to make a comeback after the low-carb craze, it has been hit with the gluten-free frenzy.” MediaPost’s Marketing Daily reported in May 2008, “Gluten-free is just one of several new food trends that the Center for Culinary Development (CCD) says is going to show up in greater quantity on store shelves and restaurants …in coming years.” Indeed, gluten-free menus are becoming more prevalent in restaurants, gluten-free specialty products are more varied and more widely available in grocery stores, and even mainstream food items such as General Mill’s Rice Chex are beginning to emerge with “Gluten Free” labeling in response to market demand.

What could possibly cause such a surge of people to turn to a gluten-free diet? Healthline’s article “Food Trends for 2008: Part 1” gives us one factor for the increase in gluten-free diet adherents. The article states, “Gluten-free is also gaining in popularity, mainly because of the increased incidence of celiac disease.” Since February 2003, when Alessio Fasano published the results of his ground-breaking study indicating that the incidence of celiac disease might be as high as one out of every 133 Americans, there has been a dramatic increase in the number of patients being diagnosed with celiac disease. However, not all who eat gluten free have been diagnosed with celiac disease or dermatitis herpetiformis. Parents of children with autism or Attention Deficit Disorder use the diet as an alternate form of treatment. Some people, especially on college campuses, view the diet as the latest health regimen, and for them, the gluten-free diet becomes one in a series of fad diets. Still other individuals choose to eat gluten free after reading about celiac disease or gluten sensitivity and deciding that they have symptoms which may indicate such a condition.

People who have diagnosed themselves with celiac disease or gluten sensitivity may never pursue getting a medical diagnosis, particularly if they have obtained a degree of relief after eliminating gluten from their diet. This approach has several drawbacks:

• Celiac disease may be the wrong diagnosis. By the very fact that celiac disease mimics other diseases, it stands to reason that the reverse is also true. During the time that a person is trying a gluten-free diet to see if it improves symptoms, which may last for several months, he or she may be delaying the diagnosis of another disease.
• Celiac disease may be an incomplete diagnosis. A person may have celiac disease and at the same time have a second condition that has similar symptoms, such as Irritable Bowel Syndrome (IBS). When a gluten-free diet fails to provide complete relief from symptoms, the patient may incorrectly conclude that he does not have celiac disease. Again, a delay in getting a correct diagnosis may result.
• There is likely to be less cheating on the diet if there has been a definitive diagnosis of celiac disease. This is especially true when young people who were put on a gluten-free diet as children leave home for the first time. Lack of medical diagnosis, new-found freedom from parental constraints, and peer pressure may lead a young person to seriously question the need to be strictly gluten free. If celiac disease is truly present, flagrant cheating may result in future medical complications.
• Having a diagnosis of celiac disease alerts a patient’s doctor to watch for accompanying complications of the disease, such as osteoporosis and anemia, as well as associated autoimmune disorders.
• Some insurance companies may be more likely to cover costs of medical tests and procedures performed in conjunction with a diagnosis of celiac disease than they would be without a diagnosis.
• A diagnosis of celiac disease or dermatitis herpetiformis signals an alert for other family members to be tested and may make it easier for relatives to approach their doctors with the request for screening.
• A parent may find it easier to work with school personnel if he or she can state that the child has been medically diagnosed with gluten intolerance than if the parent is only able to assert that the child feels or performs better on a gluten-free diet.
• A person who has a wheat allergy rather than an intolerance to gluten can enjoy a wider variety of foods.
• Eating gluten free will cause testing for celiac disease to yield inaccurate results. A person who has celiac disease produces antibodies in response to consuming gluten. Additionally, eating gluten results in a change in architecture of the small intestine of a celiac. The tests for celiac disease include blood tests for gluten antibodies and a biopsy to detect characteristic changes in the intestines. When gluten has been withdrawn from the diet of a celiac, the body quits producing gluten antibodies, and the intestines eventually return to normal. Therefore, the markers indicative of celiac disease are either absent or reduced, making the blood test and biopsy results appear as if celiac disease is not present. The only way to obtain accurate results from the current methods of celiac testing is for the patient to be consuming a diet containing gluten. The person who has gone on a gluten-free diet voluntarily will have to undergo a “gluten challenge,” which means returning to a diet including gluten for a period of time before undergoing testing. This can be quite unpleasant if the patient is physically intolerant to gluten.

Although there are valid reasons why a person with symptoms of gluten intolerance should seek a medical diagnosis before going on a gluten free diet, there may be justification for eating gluten free without the benefit of a diagnosis. There are individuals with symptoms characteristic of celiac disease who show negative results when tested, yet when these people avoid gluten in their diet, they discover that they have a cessation of symptoms. As there are still many aspects of celiac disease and gluten sensitivity that remain unknown, such people may choose to eat gluten free and enjoy the benefits of feeling better while scientists are searching for the rest of the answers.

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