With the rise in popularity of the gluten-free fad diet, it is often difficult for others to understand that people with celiac disease must be on this restrictive diet. For us, it is not about losing weight or emulating our favorite celebrity. The gluten-free diet is our only medicine, our only way to maintain good health. Yet, we are lumped into a group with dieters who want to be trendy – and we’re stigmatized for it – simply because we eliminate this offending protein from our diets.
Ten years ago, the word gluten wasn’t in the average American’s vernacular. Now, the overuse of the term gluten-free undermines the seriousness of the condition. It blinds many into thinking it is the next silly health trend that we will laugh at in another ten years’ time instead of making the connection to celiac disease, a serious, genetic autoimmune disease.
This means we are the butt of countless, hurtful jokes in the media.
It also means we fear eating out because waitstaff and chefs often do not believe us, or don’t understand the implications of “just a little crumb” of gluten. The fact that they don’t see the consequences automatically adds to the stigmatization. We don’t go into anaphylactic shock, and we are usually too embarrassed to go back to the restaurant where we had a bad experience and tell them about our night spent in the bathroom afterwards.
For those of us who are brave enough to venture out, we must keep in mind the “Golden Rule”: Always keep safe snacks on hand in case they can’t provide anything for you. So, we stow our gluten-free provisions away in our purses or pockets, and we sneakily grab bites here and there when the waitstaff aren’t looking. We fear being kicked out of the establishment like a criminal, all because the treatment for our disease (a gluten-free diet) is not seen as equal to that of a prescription drug.
Add to that the humiliating complication of your gastric symptoms becoming the sole conversation as you wait for your meal. After all, you don’t want to be seen as “high maintenance” on a first date, or labeled “difficult” by a co-worker.
To avoid feeling like a “nuisance” for requesting to go to a place with gluten-free options, we abstain from grabbing a pizza with old friends who are only in town for the weekend.
We do not get pleasure from watching our family eat the stuffing at Thanksgiving, or being called a “picky eater” because of our empty plate.
Isolated and Depressed
Because of this stigmatization, we feel angry, isolated, ashamed, depressed, and even powerless. Many of us limit or completely avoid situations in which we can’t control food. We have a deep seeded fear of others harming us because they believe we’re “just hypochondriacs,” or, for those of us who have children with celiac disease, that we’re simply over-protective “helicopter parents.”
Many don’t recognize the fact that it is draining to have to read the labels of everything that goes into your mouth – from food to drink to medicine and even toothpaste, we are constantly on call. It is even more difficult to manage what your children with celiac disease are ingesting.
To avoid putting ourselves at risk, we put vast amounts of stress on ourselves to host the annual cookout or make goodies for our child’s class parties because we can’t trust others to keep us safe. We decide that our dream of traveling the world just isn’t worth the hassle.
In short, we are unable to live our lives to the fullest because others struggle to understand our very real, and not hip-happening, need for this restrictive diet. This is why we must be willing to clearly communicate our needs, to openly disclose that we medically require a gluten-free diet, and to stand up for our good health.
Alice Bast is founder, President, and CEO of Beyond Celiac (formerly the National Foundation for Celiac Awareness). She is widely regarded as a celiac disease expert and has been a keynote speaker at major medical and allied health industry events, plus culinary and foodservice industry conferences. Read more about Alice Bast here.
Beyond Celiac aims to advance a widespread understanding of celiac disease, and to provide the needed tools to help reach its mission. The non-profit organization works to ensure that celiac disease can be promptly diagnosed and effectively managed. Through education and empowerment, Beyond Celiac enables the community to make the best decisions that reflect their desired health outcomes. The organization serves as a leading free resource for people with celiac disease and their families, and is also a leader in providing accredited training for food industry professionals. By inspiring hope and accelerating innovation, Beyond Celiac serves those on a lifelong gluten-free diet and forges pathways to a cure. Most recently, Beyond Celiac is working to increase celiac disease diagnoses through a robust family testing initiative, Seriously, Celiac Disease. Learn more at www.SeriouslyCeliac.org.
Visit www.beyondceliac.org to learn how you can get involved and find free resources to help you live your life to the fullest and eat without fear.
Editor’s Note: This blog article was originally published in May, 2015. The National Foundation for Celiac Awareness changed its name to Beyond Celiac, and the author’s bio was changed in February, 2016 to reflect this.