Dr. Daniel Landau, Clinical Psychologist, Psychiatric Department, Mental Health Services, Hillel Yaffe Medical Center
Celiac disease is defined as sensitivity to the protein that comprises gluten found in certain grains, but physical sensitivity is not the only sensitivity experienced by patients suffering from the disease. Celiac disease falls under a category of illnesses that had previously been perceived as psychosomatic, i.e. diseases in which the emotional component plays a material part of its development, origin and treatment.
Celiac patients basically suffer from acute pain and intestinal damage. The disease appears as an adverse event to other physical diseases or as the disease in and of itself, and requires complicated social and physical adjustment.
Throughout the years, medicine has extensively discussed psychosomatic illness. The current prevailing opinion is to view these illnesses as psychological events with physical manifestations that require both clinical and psychological treatment.
The proper treatment of the disease: A combination of medical and psychological therapy
People with Celiac disease experience physical symptoms that involve the stomach and intestinal activity. Since these symptoms are also considered manifestations of unexplained anxiety or any other emotional manifestation of distress, diagnosis is not simple. Accordingly, signs of depression can also simultaneously occur since real performance difficulties are experienced – in eating, sleeping and in the workplace.
Once the disease is diagnosed, the best treatment is a combination of medical and psychological therapy to teach patients how to properly manage the disease and adapt their lifestyle accordingly to living with a chronic illness. This situation requires practical, sensitive, social and family solutions.
Celiac patients are strictly prohibited from eating any products containing any form of gluten. Medical treatment is, therefore, far more defined and explicit. From a psychological perspective, patients must emotionally cope with adjusting to the new situation. They must acknowledge the problem and understand the measures needed to solve the problem, while identifying other options.
Impaired social performance is reflected in the individual's isolation during typical social situations, for example at a party where the food contains gluten (pretzels, sandwiches, beer) that they cannot eat. In this situation, the shame barrier can cause the patient to feel uncomfortable. They are ashamed of the disease and do not want to disclose it and are therefore perceived as the wet blanket of the party.
Children with Celiac disease: the importance of parental and family involvement
Adults can control themselves and simply avoid certain foods. For children, however, the issue is far more complex. It is extremely difficult to explain to a two-year-old child that they cannot eat something that all the children around them are eating tempting food, such as pizza, because it might be harmful for them.
In this respect, education from an early age as well as parental and family understanding and involvement is critically important.
Once the disease has been diagnosed, parental involvement is required. The psychological team will provide the family with the necessary support and counseling, which is no less important than the medical treatment. The adjustment of parental and family behavior to a family member with Celiac disease is not simple and requires adapting to a certain diet in addition to acquiring knowledge about food products: constant checking of labels to make sure that the product does not contain gluten, use of certain baking and cooking ingredients only, etc.
Making parents aware, and thereby making the child as well as other family members aware, is essential. For example, if the family decides to order pizza for dinner, a suitable alternative must be provided to the family member who has Celiac. Making the young Celiac patient aware and understanding that there are foods that they must avoid is important, and it is important to not avoid creating situations in which the environment has prohibited foods since the aim is to adjust to and learn how to cope with this new situation. One possible solution is not to order pizza, but to make one at home – in fact make two – one with a gluten substitute and one regular pizza. This way, no one in the family has to give up on what they want.
The idea is to avoid making the family space into one filled with tension or conflict, but rather to avoid the tension altogether. This requires meticulous planning. However help is available through the multidisciplinary team, and counseling by the psychologist or social worker.
It is actually easier to implement bans and prohibitions among small children, since parental authority still exists. When the patient is a young child, families, and particularly the parents, are first addressed as the support system facing the challenge since they are responsible for managing the family. Creative limits must be imposed on the child. It is important that a solution not be forced. Parents must be helped to find the solutions that are right for them and for their family. The child must encounter the conflict and must not be shielded from the knowledge that others can eat certain foods that they cannot – they need to learn and develop, with the help of their parents, the internal tools for coping with the disease, social tools that will them him cope in the future.
The Shame Barrier in Celiac Disease – A Source of Stress
As Celiac patients get older and assume responsibility for themselves, the problem (in addition to the physical problem) lies more with the shame barrier, for which various solutions can be provided as well. People suffering from Celiac disease (which has an emotional component), might think of themselves in terms of "being defective." In conversations that we conduct with these patients, we explain that Celiac is like any other disease and that it does not make them abnormal or outcasts. For both adults and children, it is always important to stress that they don't need to be ashamed of the disease or feel guilty.
The shame that Celiac patients have regarding their disease might also create an additional source of stress that only exacerbates the illness. Emotional-psychological intervention is therefore critical during treatment. If the patient displays any signs of depression or anxiety, psychiatric intervention might also be required so that the patient can be prescribed medication that will help them cope with acknowledging the disease, the physiological treatment, etc. Psychiatric intervention will only be provided with the patient's consent. In any case, the psychological therapy facilitates the balancing of the disease, but should not necessarily be continued when this balance has been attained and the patient learns how to live with the disease.
Like other psychosomatic or chronic illnesses, Celiac disease must be treated as a partner with whom the patient must learn to live. As with any relationship, there are ups and downs that must be coped with accordingly.
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