WE CALL OURSELVES CELIACS

THIS BLOG ENTRY IS A WORK IN PROGRESS….

We call ourselves Celiacs. This is not the proper terminology, nor is it what the medical community calls us this. Celiacs it is what we call ourselves. Our identities are as a group of people having many of the same experiences no matter where in the world we live, what type of living situation we are in, what type of families we come from, and what type of health care we have access to. Collectively we share an autoimmune disease, but out lives are as different as any other individul amy be from another. However, the Celiac Community as diverse as we may be, share many of the same experiences by sharing a disease that affects each and every part of our lives.. For example, delayed diagnosis is prominent among the community of those with Celiac disease, even for those in countries with ample access and funding for healthcare. For the Celiacs who were fortunate to be diagnosed without symptoms either as a fluke or as part of a standard series of wellness testing still must navigate the social implications and lack of access to safe food. One of the biggest bonds that Celiacs expereicne thought their life with the disease is a lach of access to safe foods. From family gatherings to travel, each person with Celiac disease must navigate how to access food that won’t make them sick. Lack of access to 100% safe foods is a human right, however the collective community of those with Celiac disease has almost zero assurance that their food will be safe to eat, especially in the United States.

Everyone who is diagnosed with celiac disease goes thought a different experience leading up to their diagnosis. For some people it is as simple as blood work and follow up tests due to an irregularity. For others it is years of misdiagnosis and delayed diagnosis after enduring miserable and sometimes life threatening symptoms. Yet others must endure perhaps the worst diagnostic criteria that has ever been invented which is the gluten challenge. Since an official diagnosis of Celiac disease requires a positive biopsy of damaged villi, Celiacs are asked to intentionally make themselves extremely sick (even life threateningly sick) for the hopes that enough damage has been done to their body to have a positive biopsy. The amount of time a person with Celiac has to make him/herself sick is debated (likely because there is no standard that is appropriate for everyone) and ranges from 2 weeks to 6 months. The fact that Celiacs must jeopardize their own health just to have what is considered a diagnosis from a GI, when Celiac in fact affects the whole body is probably one of the worse diagnostic requirements ever invented by Western Medicine. The fact that this diagnostic requirement is the only way a person with Celiac disease is eligible to the extremely limited disability services provided for Celiacs in the US (a disease protected under the ADA) is even arguably even worse.

The community of Celiacs has learned to support one another as each new person begins the gluten challenge for diagnosis or is diagnosed another way and is a newby. When discovering that the only known cure for Celiac disease is to eat a 100% gluten free diet, although overwhelming, it comes often as a relief. The simplicity of avoiding something as a cure sounds amazing for those of us who fell vulnerable to the more severe symptoms of Celiac. However, safely eating gluten free to the extent that is required for a person with Celiac in the United States has become increasingly more challenging due to a combination between the popularity of gluten free foods as a fad diet and the lack of actual regulation on gluten free labeling by the FDA. Those of is with Celiac disease become severely ill from less than a crumb of gluten. Because trace gluten is allowed in ALL foods labeled as certified gluten free foods in the United States. those of us in the Celiac community quickly learn “the hard way” that certified gluten free foods are not always safe for us. The fact that ALL labeling for gluten free foods in the United States is voluntary means that companies that cut corners and allow trace gluten are given ZERO penalties for making an entire community ill. Even more distressing is that the foods are expensive specialty foods that claim to offer safety and texting, yet time and time again, community members and Watchdog groups find glutenfree labeled food that is not safe for Celiacs. While our options have seemingly increased, actual safety of gluten free food has decreased leaving the Celiac community to rely on social media, apps, and watchdog sites.

While Celiac disease is the most prevalent autoimmune disease (more prevalent than Type I/Juvenile Diabetes), it is the least funded. As stated in research by Sams and Hawks, “Previously thought a rare illness, celiac disease is now recognized as one of the most common genetic disorder (incidence of 1% of newborns) among populations with a long history of agriculture, such as those that settled Europe and the Near East (Gasbarini, 2008; Sams and Hawks, 2013) (350”. Although it is one of the most prevalent genetic diseases in all populations, not only is it THE least funded autoimmune disease, but it is the least protected by the FDA, ADA, medical community and social resource structures. For example, most elder centers, childcare centers, schools, and even hospitals not Celiac safe. Celiacs in care settings often rely on family and friends to bring safe food to them so that they do not get sick from cross contamination or mistakes. Celiacs that don’t have reliable social networks to help them, suffer greatly from their lack of access to celiac safe food. Not only is this need for access misunderstood and under recognized among the general medical industry but there are not many studies geared toward collecting data about this highly prevalent issue. Furthermore, those with Celiac disease who must rely on emergency services from FEMA, food banks, soup kitchens, etc usually have ZERO safe options. Even daily medication are not regulated to be celiac safe and many Celiacs including myself have fallen ill to medications or dental treatments due to micro-amounts of gluten in prescribed medications.

My goal is to focus on the different aspects of the Celiac community by sharing my personal experience, data, and analysis from a survey I have preformed. I also will be conducting interviews and reviewing literature about Celiac disease. This blogsite is a work in progress. Many pages will be edited as more research is collected. If you have an experience or data to share, please email me at michellesharkeyart@gmail.com