A Life of Limitation: Celiac Disease

My brother is my best friend and our bond is irreplaceable. Between our parents’ divorce and the many cancers our family faced, we always seemed to fight our battles together. This year is not an average year for my brother, as he is finally entering into adulthood and turning twenty-one in just a few months. The excitement is almost too much for him to anticipate, that is before he remembers. He cannot drink any type of beer or wine cooler anymore. He remembers that he can’t even take a bite from his own birthday cake without being bent over in profuse stomach pain for hours. He remembers the doctor appointment that changed his life forever. At just nineteen years old, my brother was diagnosed with celiac disease; an autoimmune disorder where the ingestion of gluten causes normal stomach villi, the fibers that help us digest food, to break down, consequently resulting in severe damage to the small intestine (“What is Celiac Disease”). Gluten is a combination of proteins found in wheat, barley, and rye. It is used to help foods maintain their shape, rise while baking, and provide a chewy texture. Its thick texture makes those with celiac disease have a more difficult time digesting it. This is the reality for 1 in 100 people worldwide with two and a half million undiagnosed in America alone (“Celiac Disease”). This was one battle my brother would have to face alone. Celiac disease causes its victims to live a life of misery with severe symptoms, an array of diagnosis and very little treatments.

This disorder was not always prevalent in our society, as it was very seldom heard of in the 20th century but has been around as early as the Neolithic period, when food intolerances began. The first description of celiac disease was made by a Greek physician named Aretaeus of Cappadocia in the first century AD. He called the disease “koiliakos” after the Greek word “koelia” which means abdomen. In the early nineteenth century, seventeen centuries after his findings, researchers began testing on this disease after Dr. Mathew Baillie published his observations on it (Guandalini). Although the increase of celiac disease in the 21st century is still a mystery, some researchers have accredited the hygiene hypothesis to its prevalence, stating that “we live in a world of cleanliness, causing the lack of early childhood exposure to dirt or infectious agents, and increasing the susceptibility of immune disorders and allergic diseases” like celiac (Lerner et al). Another possible cause of the rise of celiac disease may be due to the change in the process of how our bread is made. Although there is the same amount of gluten found in our bread today than before, the fermentation process was much longer, reducing some of the harmful toxins found in gluten (Oksman). Our society has become accustomed to a severe “supply and demand” philosophy. In turn, foods that look nicer and can be made quicker sell out over those that do not, putting gluten at the top of the market.

The symptoms of celiac are abundant and affect everyone differently. According to the Celiac disease foundation “There are more than 200 known celiac disease symptoms which may occur in the digestive system or other parts of the body” (“Symptoms of Celiac Disease”). The most common being abdominal pains, diarrhea, bloating, vomiting, weight-loss, and extreme fatigue. Symptoms of this disease only occur after gluten has been ingested and may take a while to become known, as the damage to the intestines are slow at its onset (“Celiac Disease: Symptoms, Causes, Diagnosis, Treatment, Risk Factors”). There are three different diagnoses when it comes to celiac disease that are dependent upon the degree of symptoms; classical, non-classical, and asymptomatic. Classical celiac patients usually experience the symptoms of malabsorption; poor intestinal absorption of nutrients. This includes diarrhea, foul-smelling stool, vomiting, and weight loss. These patients experience the most prevalent symptoms of the disease. Non-classical patients may show little to no signs of malabsorption, yet still may experience similar symptoms. In some cases, those with non-classical celiac will also have unrelated symptoms such as chronic migraines with little to no malabsorption occurring. These patients commonly experience iron-deficiency anemia and fatigue. Other more severe symptoms include peripheral neuropathy; random tingling, numbness, or pain in the hands or feet, reduced bone mass and bone fractures, early menopause, unexplained infertility, and dental defects due to less enamel in the teeth. Asymptomatic celiac, also known as silent celiac, is the hardest to diagnose of the three because symptoms are not present in these patients. The only symptom they may experience is abdominal bloating. Although these patients do not get sick and do not experience any type of malabsorption, doctors found that they still experience severe damage to their small intestine villi when ingesting gluten (“Symptoms of Celiac Disease”).

Asymptomatic celiac may be problematic if undiagnosed because untreated celiac patients are at risk of experiencing neurological problems. Once the stomach villi are gone, the intestines have a difficult time breaking down food, and cannot break down gluten anymore. When the stomach can no longer break down gluten, it can no longer break down its harmful toxins. Anti-neuronal antibodies; “antibodies found in patients with disorders that are triggered by an altered immune system response” (Communications), may become a product of these toxins, which then circulate into the central nervous system (Caio, Giacomo, et al). In turn, this can cause celiac patients a variety of neurological problems, such as epilepsy, ataxia, multiple sclerosis, and dementia.

When it comes to diagnosis, just about anybody at any age can be found to have celiac. There are three factors involved in its accumulation. First, there needs to be some king ingestion of gluten as the deterioration of stomach villi is the most vital indicator. Secondly, the patient in question must possess the genes associated with celiac diseases. Researches and medical professionals have found that “increased variants of the HLA-DQA1 and HLA-DQB1 genes are the primary cause of celiac disease” (Bojovic, et al). Finally, there needs to be some kind of environmental trigger to bring out the disease. Researchers have not found any specific links between these triggers other than the fact it marks the onset of the disease. Someone may have the genes for celiac disease lay dormant their whole entire life until this environmental trigger occurs. For example, my grandmother, who is now in her early seventies, was diagnosed with celiac disease in her early sixties. For sixty years of her life, the disease rested inside of her without any repercussions. It was only until she contracted a cold that these symptoms began to show. As a full-blooded Italian women, foods that contained gluten were prominent in all of her daily meals. In no time she had begun to experience celiac symptoms and was quickly diagnosed. Common triggers among those with celiac disease are surgeries, pregnancy, menopause, antibiotic use, and viral infections (Burkhart). When it comes to genetics, celiac disease is hereditary. The Celiac disease foundation warns “Those with first-degree relatives such as our biological parents and siblings, are at a 1 in 10 risk of developing the disease” (“Symptoms of Celiac”). It is recommended that these people get professionally tested (“Celiac Disease Screening”).

In regards to a medical diagnosis, celiac disease is difficult to distinguish as those who are gluten sensitive often times show similar symptoms. The difference between the two is the breakdown of stomach villi. The only way to confirm if the disease is present it to do a biopsy of the stomach. Before the medical examiner can perform a biopsy on a possible celiac patient, they must show prevalent signs of the symptoms and a positive reaction to a gluten free. They also must take a blood test to show specific antibodies in the blood related to celiac such as the most common, tissue transglutaminase antibodies which are found in 98% of those with the disease (“Celiac Disease Screening”). If the blood test comes back positive, patients must have an endoscopy done, a procedure in which doctors stick a scope up the patient’s nose and down into their stomach (“Celiac Disease: Symptoms, Causes, Diagnosis, Treatment, Risk Factors”). This allows them to see the presence of stomach villi and the degree of destruction, the basis of the diagnosis (Freeman).

There is currently no cure for celiac disease or a form of medication to treat it (“Celiac Disease: Symptoms, Causes, Diagnosis, Treatment, Risk Factors”). Once it has developed, and the stomach villi begin to deteriorate, it affects the patient forever. The only way to avoid its painful symptoms is to not only not eat gluten, but to stay far away from it. Many times, our foods get cross-contaminated, touching one another, and transferring bacteria. This is detrimental to those with symptomatic celiac as any bacteria from gluten, whether it be the smallest bit, will cause irritation. Restaurants and food production warehouses are a field of cross-contamination leaving the consumer to ask, is this truly 100 percent gluten-free? The only way to control this disease at its most, would be to cook every single meal at home, gluten free. This eliminates any risk of cross confimation, and the uncertainty of where the food is coming from. A gluten free diet includes cutting anything with wheat, barley, and rye; three ingredients commonly found in almost all of the food we eat.

Looking into the future, celiac disease will most likely keep rising with each generation. Those with the disease have little hope for a cure as stomach villi cannot grow back, nor have we been able to create artificial villi. Despite this, technology is always advancing and new discoveries are always being made, so the theory of a cure may be a possibility someday. Technology may also help to make testing easier and more efficient, as biopsies are expensive and painful. Researchers believe that as few as 20 percent of the people with the disease receive proper diagnosis due complications in the diagnosis process and distinguishing between symptoms related to other medical issues (“Celiac Disease: Symptoms, Causes, Diagnosis, Treatment, Risk Factors”). If medical examiners can find a more efficient way of testing without a lengthy procedure specified toward the detrition of stomach villi, more people will be properly diagnosed and adjust their diets. This also benefits those with asymptomatic celiac disease who cannot rely on symptoms to tell them something is wrong. Restaurants have become tremendously considerable to this disease by providing gluten free menus or offering alternatives. Supermarkets have also become accommodating by providing gluten free isle and labeling foods gluten free. Even though those with celiac cannot accommodate gluten into their diets, researchers and nutritionists should take steps in creating more food without gluten. In food expert Michael Pollen’s research, he stated: “I’ve heard from lots of people that when they eat properly fermented bread, they can tolerate it.” (Mindbodygreen). Despite the fact proper fermentation may take longer, it is an effective alternative for those who cannot eat gluten. Research on these alternatives and the advancement of technology are what patients with celiac disease can hope for to help create a more comfortable life style for them. As the disease grows, so does technology and our knowledge on celiac. We can only hope for a better future for patients, but for now, they must keep to their current treatments, take crucial steps to avoid putrid sickness, and stay as optimistic about the future as possible. Everywhere we go, my brother and grandmother must always be critical and think twice about what they are about to eat. To have celiac disease is to truly live a life of limitation.

References:

Bojović, Katarina, et al. “Genetic Predictors of Celiac Disease, Lactose Intolerance, and Vitamin D Function and Presence of Peptide Morphins in Urine of Children with Neurodevelopmental Disorders.” Nutritional Neuroscience, vol. 22, no. 1, 2017, pp. 40–50., doi:10.1080/1028415x.2017.1352121.

Burkhart, Amy. “Celiac Disease Triggers.” Amy Burkhart M.D., R.D Integrative Medicine, Digestive Health, 17 May 2016.

Communications, NHSGGC. “Anti-Neuronal Antibodies.” NHS Greater Glasgow and Clyde.

Caio, Giacomo, et al. “Clinical and Immunological Relevance of Anti-Neuronal Antibodies in Celiac Disease with Neurological Manifestations.” Journal of Gastroenterology and Hepatology From Bed to Bench, vol. 11, no. 3, 2018, pp. 146–152.

“Celiac Disease.” Mayo Clinic, Mayo Foundation for Medical Education and Research, 6 Mar. 2018.

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“Celiac Disease: Symptoms, Causes, Diagnosis, Treatment, Risk Factors.” WebMD.

“Definition of Malabsorption.” MedicineNet.

Freeman, Hugh James. “Role of Biopsy in Diagnosis and Treatment of Adult Celiac Disease.” Journal of Gastroenterology and Hepatology From Bed to Bench, vol. 11, no. 3, 2018, pp. 191–196.

Guandalini, Stefano. “A Brief History of Celiac Disease.” The University of Chicago Celiac Disease Center, vol. 7, no. 3, 2007.

Mindbodygreen. “Michael Pollan Weighs In On The Gluten-Free Craze.” Mindbodygreen, Mindbodygreen, 23 Feb. 2017, www.mindbodygreen.com/0-13802/michael-pollan-weighs-in-on-the-glutenfree-craze.html.

Oksman, Olga. “Could Sourdough Bread Be the Answer to the Gluten Sensitivity Epidemic?” The Guardian, Guardian News and Media, 23 Mar. 2016.

“Symptoms of Celiac Disease.” Celiac Disease Foundation.

“What Is Celiac Disease?” Celiac Disease Foundation.