For a large sum of individuals around the world, living with a disease or any other type of severe health condition is hard. Upon learning of the diagnosis, patients must face a life-changing experience, or they have dealt with it their entire life. Whatever the condition may be, the complexities are not always seen and understood by the general public. One condition that may very well be one of the more misunderstood diseases is celiac disease.
The condition is defined by patient’s extreme sensitivity to gluten, but to the casual observer may only appear to be just that. Yet for those diagnosed with celiac disease and/or gluten sensitivity, there is so much more to coping with the disease than maintaining a gluten-free diet.
One of the factors that often go unnoticed for those who are gluten sensitive or have a diagnosis of celiac disease is the struggle of eating out. This is said to mean much more than simply “going out” for dinner. First off, eating as a whole is an undertaking that has become distinctly social and cultural. For those experiencing the dating scene, going out with friends, or simply grabbing a bite to eat with a long lost relative, there is most likely going to be an encounter with food. The exact same can be said for cultural gatherings, from weddings, bar mitzvahs, Ramadan, and even the various holiday gatherings like Christmas or New Years.
For patients diagnosed with celiac disease, it can be difficult to attend events and other social gatherings like these. This is due to the fact that patients must make the decision to eat before they go, bring special food with them, or ask the host of the event if they can make an accommodation. For some, this can cause the onset of stress, and in the most severe of cases, depression and anxiety.
The psychological burden for celiac patients
As alluded to above, there is an inherent decision that must be made for any patient with celiac disease before they ultimately make the decision to attend a social gathering or event. Making this decision can prove to be a difficult one, as the patients will often want to avoid being a burden and feel as if they are inconveniencing the hosts. In some cases, the disease being viewed from those that are close to the affected individual is not always warm.
Family members and friends will not always welcome this new change, as they are not required to focus on what they can and cannot cook and eat. For patients diagnosed with celiac disease, this can psychologically take its toll, resulting in a feeling of abandonment and loneliness.
For a new diagnosis of gluten sensitivity and celiac disease, the sudden lifestyle changes that come with it can be extremely difficult to handle. Those who have dealt with the diagnosis for a while begin to grasp these changes and accept them as their new respective norms. In doing this, patients are better able to assimilate to society, as opposed to letting the difference distance themselves from those who do not struggle with the same health condition.
For those who may still have difficulties coping with the celiac disease, often a good technique is to research and join support groups wherein individuals are experiencing the same feelings. In doing this, the benefit is twofold.
First, a patient will be able to surround themselves with like-minded people who are going through the same hard times, discussing the best ways they have used to combat the difficult health condition, Second, patients are able to learn of the best eating practices in order to stay as safe as possible and not risk an unwanted gluten-induced trigger. Lastly, an understanding for patients that their disease cannot simply be shut off can prove to be one of the most important takeaways.
This is said to mean that the diagnosis is not within a patient’s control, however what they eat and the attitude they are able to maintain are within control. Knowing this, as well as seeking out a community of like-minded patients, can prove to be vital in coping with the diagnosis of celiac disease and gluten sensitivity.
What is celiac disease?
Celiac disease is caused by a distinct immune reaction when any form of gluten is consumed by a patient. The primary types of food that are classified as gluten include the “big 3,” of which include wheat, barley, and rye. At this current point in time, there is no cure for celiac disease. The disease has been reported as affecting 1 in 100 people, and is a disease that is hereditary.
Treatment options will commonly consist of a strict gluten-free diet in order to keep patients safe and away from any potential triggers. Doctors will often diagnose the disease through a series of blood tests, of which include what is known as serology testing and genetic testing. In doing so, doctors are better able to confirm whether or not a patient is in fact diagnosed with celiac disease.
As mentioned above, celiac disease mainly affect the immune system. When a patient eats any type of gluten product, a reaction occurs within the small intestine. If a patient eats gluten, the villi in the small intestine will flatten out and stop taking in these necessary nutrients that are necessary for energy. In some cases, the reaction cannot necessarily be felt by the patient, however the intestine will still be affected with the intake of gluten.
The common symptoms associated with the severe health condition include headache, fatigue, loss in bone density over time, anemia, damage to the nervous system, hyposplenism (the disfunction or inhibited function of the spleen), pain in the joints, acid reflux and heartburn, itchy skin, dental enamel damage, as well as mouth ulcers.
The future for patients with celiac disease
As simple as it may sound, one of the best methods for coping with the mental and physical struggles that come with a diagnosis of celiac disease is time. This is said to mean that time will be required in order to learn of the ins and outs of the disease and what it entails. After this, patients will be able to better grasp the health conditions implications as they begin to better manage their new diet.
In addition to time, an understanding that the disease cannot be reversed but rather managed is key, as the diagnosis is not within the patient’ control. With the adaptation of these learning opportunities comes the need for a growing community in the celiac disease population. Doing so can make affected patients feel more welcomed and not alone in their fight against the difficult symptoms that can come from celiac disease.