b'ing stigma-free

 

food_allergy_plate_caution“Faster Mom, FASTER!” I screamed as I sat helpless in the back seat of the car. My eyes scanned my body as hundreds of hives sprouted from my legs, arms, and chest. My oxygen level was so low it was as if I were breathing through a straw. I was experiencing anaphylaxis. Moments earlier, a metal needle loaded with epinephrine exploded into my upper thigh muscle and helped my body counter the allergic reactions. My predominant memories of the quick drive to the hospital are the consoling words of my parents and my overwhelming fear of death. Vividly, I remember I passed a stop sign and became intrigued. I had never noticed it before, but now I reflected, “Would this be the last time I saw this stop sign? Will food allergies stop me?”

I Am Not Alone

I have been living with severe food allergies to peanuts, tree nuts, sesame, and sheep/goat milk for 19 years. However, as a child I was also allergic to cow’s milk, soy, and all legumes. If I ate anything with these foods in it, or if anything I ate came into cross-contact with these allergens, death became a possibility. This is a constant worry that I harbor in the back of my mind – every time I place a piece of food in my mouth. I am not alone: others share this worry, and battle against food allergies too. According to Food Allergy Research & Education, known as FARE, about 15 million individuals in the United States, including one in 13 children, have one or multiple food allergies. From 2008 to 2013, I have had the privilege of meeting some of them; teens from across the United States living with severe food allergies get together at the FARE Teen Summit, an annual conference.

No Cupcakes for You 

People with food allergies see certain foods as poisons, while others see the same foods as treats. During my childhood I was frustrated by having to cope with the problems associated with food allergies. In elementary school others would have fun enjoying cupcakes and cakes at birthday parties, and I could not join them. My mom would make special, safe treats for me, but I became labeled as the kid who would eat differently or not eat at all. To a young child this hurt. I hated explaining myself every time an event involved food. Many times I would not even go to certain events because I dreaded the hassle of explaining my allergies and being perceived as rude or needy by adults or peers. Throughout middle and high school the stigma continued. At other people’s homes I would try to explain why I was not eating, and the host would treat it as a sign of disrespect or they would just feel bad for me. Many people do not know the severity of food allergies, so it becomes very difficult to explain yourself. I did not want people to have to go out of their way for me or change their plans to eat somewhere else because of me. I felt as though I was becoming a burden. Dating even became hard because of the embarrassment of asking girls what they had eaten that day. If they recently ate something I was allergic to I could not kiss them without fear of exposure.

Hearing stories about children with food allergies being bullied saddens me the most. In elementary school I remember a kid at my table put a cheese cracker in my face and teased me about how this little cracker could kill me. In middle school a student almost put a peanut snack in my can of soda when I left the table. Though I remember those events, better memories prevail: Learning that my friends had stopped the boy from putting the peanut in my drink, teaching my concerned roommate how to use my epinephrine auto-injector, having a chef in a restaurant care to talk to me and bring me a safely prepared meal, and when a friend will go out of his or her way to make sure we will eat at a safe place. These moments of understanding and empathy have helped me move forward. They have dissolved the stigma.

Ending the Stigma

Through educating others, the stigma surrounding food allergies can become extinct. Food allergies are severe and not a joke, unlike what is illustrated in popular culture. Individuals with food allergies can explain to others what it means to live with poison on the dinner table. Together we can help end the stigma by recognizing that food allergies are not a lifestyle choice, but rather a life-threatening and life-altering immune-based disease.

 

 

Nick BellaciccoNicholas Bellacicco is a nineteen-year-old college student born and raised in Stamford, CT. He is currently in his sophomore year at Baylor University in Waco, TX studying Medical Humanities on the pre-med track. Nicholas is severely allergic to peanuts, tree nuts, sesame, and sheep/goat milk. Living with food allergies has given him the passion to enter the medical field; he hopes to attend medical school and become a physician. In 2009, Nicholas co-starred in Nick News, “I’m Allergic to my World” television broadcast. The Nickelodeon program explained the everyday hardships of living with food allergies. 

Nicholas is a TAG (Teen Advisory Group) member for Food Allergy Research & Education (FARE). FARE works on behalf of the 15 million Americans with food allergies, including all those at risk for life-threatening anaphylaxis. FARE’s mission is to improve the quality of life and the health of individuals with food allergies, and to provide them hope through the promise of new treatments. Learn more at www.foodallergy.org.


 

Gluten intolerant cartoonWith 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.

Eating Out

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_2Alice 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.


 

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