Celiac disease is a lifelong condition that can radically alter someone's way of life, prompting him or her to switch to different eating habits, adopting a more active lifestyle, and adopting healthier measures, in general. Those who are struggling with the disease must make regular visits to their physicians in order to gauge its progress and to receive valuable information on how to coexist with it.
However, a recent study suggests that these is a high an number of celiac patients that fail to receive follow-up treatment after their initial diagnosis. And, the reasons for this aren't very clear
As a disease, celiac is a chronic, multiorganic, and autoimmune process, that affects your intestinal tract and can spread to any other bodily organs and tissues. While celiac disease targets primarily those who have a genetic predisposition for it, there may also be cases where the patient has no history of it in their family (though this is rare). The main aspect of celiac disease is that its symptoms are caused by an exposure to gluten, which is a protein present in wheat, barley, and rye, as well as all products related to these.
Initially, it was believed that celiac disease was solely an intestinal disorder, as its primary symptoms frequently affect mostly the intestines. However, it was later discovered to be a systemic condition, given that there is an abnormal immune response to gluten exposure that causes the body to develop different antibodies that target and attack different structures of the body. Nevertheless, while the term commonly attributed to celiac disease is ‘gluten intolerance’, it’s important to note that it is not a simple intolerance or allergy towards gluten.
It’s a serious disease that, without proper treatment and follow-up care, can cause severe complications; from mild symptoms such as aching, bloating, and stomach discomfort, to life-threatening conditions such as intestinal cancer, or cancer of other structures. It is also not uncommon for celiac patients to suffer from cardiac diseases (particularly myocardiopathy), neurological disorders, and psychiatric afflictions (known as neuro gluten).
Through recent advances in both our medical technology, as well as our understanding of the disease itself, it’s been made clear that celiac disease cannot be identified nor diagnosed using traditional methods. Both the symptoms that were associated with gluten intolerance, as well as the diagnostic criteria have evolved as new discoveries are made. Consequently, both the general populace, as well as the medical community have had to evolve in order to accommodate this new situation.
A complicated disease
In stark contrast to other ailments or diseases, the only physical evidence that celiac disease presents is a chronic inflammation of the duodenal mucous membrane, which consists primarily of lymphocytes, without atrophy of the intestinal villi, especially in children older than 2 years of age, as well as adults. Currently, the atrophy of intestinal villi is considered an exceptional discovery.
Furthermore, in opposition to other afflictions, the celiac disease manifests in the person alongside negative serology, which means that there are no antibodies in their blood, especially anti-transglutaminase antibodies. This is due to the anti-transglutaminase being produced and deposited in the intestinal mucous membrane, without passing into the blood. For this reason, duodenal biopsies have become a new method to diagnose celiac disease. However, this practice is egregious, expensive, and not readily available in most health centers, and for this reason, it has not become commonplace.
The symptoms of the disease are just as baffling as its mechanisms. Up until recently, the most common symptoms associated with celiac disease were severe malabsorption, malnutrition, and stunted growth. However, these symptoms have now been discovered to be exceptional, especially in adults and children older than two years of age. The vast majority of patients suffer from permanent or mild stomach discomfort, as well as other non-digestive symptoms. Furthermore, some presentations of the disease are completely asymptomatic on a digestive level, which can be mainly attributed to gluten opioid effects that can frequently mask the intestinal damage.
Due to its systemic nature, no two cases of this disease are alike; one person might manifest diarrhea or constipation, while others might experience stomach pains and cramps. Furthermore, if left to its own devices, the disease can spread to affect other structures and cause serious damage, including causing intestinal cancer, as well as increasing the probability of developing cancer in other structures by at least 60%.
The only known way to reduce or prevent the symptoms of celiac disease is to follow a gluten-free diet, as well as consult regularly with a physician. The latter point is particularly worrying, considering that, according to a recent study, over 25% of celiac patients fail to receive follow-up treatment after their initial diagnosis.
The study in question, which was performed by Beyond Celiac and published in BMC Gastroenterology, surveyed more than 1,500 celiac patients and discovered that more than a quarter of them do not regularly consult a physician for their condition. Furthermore, most of them expressed that the reason for which they do not seek aid for their disease is that they feel they are ‘doing fine on their own’.
Other reasons included that they didn’t feel like they needed to and that their physician was inexperienced or not knowledgeable of the disease, which made previous visits not helpful.
The study in question concluded that a significant portion of celiac patients are virtually left alone to fend off a disease that, if not properly treated, might cause serious symptoms or put their very lives at risk.
Alice Bast, the CEO of Beyond Celiac expressed that these patients are struggling with a lifelong autoimmune condition many physicians are not knowledgeable about or simply don’t recognize as a real condition. Bast strongly suggests that something must be done to remedy this situation and that the study conducted by Beyond Celiac is a wake-up call for those who still don’t believe in the existence of it. She urges physicians to take celiac disease seriously and to properly issue follow-up appointments to care for their patients instead of leaving them to their own devices after establishing a diagnosis.