Refractory Celiac Disease – Why Gluten Free Diet Does Not Work?

Refractory Celiac Disease

Celiac disease is an autoimmune condition in which the body attacks its own tissues (those found in the small intestine) in response to the ingestion of gluten. This condition can create long term damage to the sensitive lining of parts of the digestive system. Refractory celiac disease (known as RCD) is quite related, but yet different from celiac disease on its own, an increasingly common digestive disorder.

Celiac disease diagnosis normally is made with the results of a laboratory investigation known commonly as a celiac disease panel. It is used as a primary diagnostic tool for patients complaining of symptoms like stomach bloating, gassiness and cramping, if persistent when celiac disease is suspected. However, there is no specific test for refractory celiac disease. The blood work merely indicates an autoimmune reaction to gluten, and is non specific in this regard.

The only treatment for common celiac disease is a gluten free diet. On this specialized and restricted diet, foods that contain gluten or may have come into contact with gluten are avoided. This includes foods like wheat, barley and rye and foods that are made with them. Additionally, many foods that are made with small amounts of gluten are also important to eliminate from a gluten free diet such as dressings and sauces and potato chips and French fries. This important dietetic change is actually the key to diagnosing refractory celiac disease.

In RCD, the dietary changes that are normally the basis of treatment for celiac disease and gluten intolerance do not work when the advanced form of the condition exists. In fact, this must occur for a period of twelve months before the diagnosis of refractory celiac disease will be considered (gluten free diet adhered to for a period of twelve months with no reduction in or elimination of symptoms). When RCD exists, even the most diligent of gluten abstinence may not completely counteract symptoms like gassiness, cramping, bloating and feelings of persistent indigestion. There are two types of RCD, type one and type two. The difference between them is the presence or lack of intestinal lymphocytes. However, because RCD can still exist without them, their presence merely indicates the possibility of the second type of the condition.

There are multiple reasons as to why a gluten free diet may have no effect on RCD. One of the most popular theories involves secondary conditions. While a blood test for celiac disease with a positive result certainly shows that the condition is present, it does not mean that there are not secondary illnesses present as well, such as irritable bowel syndrome, for instance. Thus symptoms may still persist (from the secondary condition, e.g. IBS) even if symptoms have been eliminated from the primary condition (celiac disease). Similarly, this can be gender specific or vary by age as well. The symptoms of celiac disease are quite diverse, so while infertility (one of the more common symptoms of celiac disease in women as they age) may be present in older women with celiac disease or refractory celiac disease, that does not mean that there is not another cause of the symptoms. Because of this, a gluten free diet may not work for RCD and its symptoms. Other autoimmune conditions may also prevent a gluten free diet from being an effective form of treatment. Vitamin and nutrient deficiencies that can bear similar celiac symptoms can coincide with autoimmune gastritis, and Addison’s disease can affect weight and fatigue levels.

Additionally, the level of sensitivity to gluten may play a role in the lack of effectiveness a gluten free diet may be for RCD. Most people, even those that are sensitive to gluten, can typically handle very small trace amounts of the protein. These are present in many foods, but amounts ranging from 10-20 ppm (parts per million) are not uncommon in many everyday edibles. In persons with refractory celiac disease, even these casual trace amounts that normally create no adverse reaction in most people, can be an issue and render a gluten free diet insufficient.

Since diet is largely ineffective for managing RCD, other treatment options are often considered. Steroids are one line of therapy, used for their immuno-supression qualities in gradually tapering does of medications like prednisone. Other medications that are sometimes used either with, without or in place of steroids are purine analogue antimetabolites and Campath therapy.
It is incredibly important that diligent and regular medical care be implemented when celiac disease or RCD is suspected. This is because if treatment for the common autoimmune condition does not seem to be working, a healthcare provider can recommend further action. Additionally, he or she can determine alternate treatment plans if RCD is alleged.