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Food Allergy Advocacy in Schools

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Sending your child off to school is worrisome enough as a parent—but when your child has a food allergy, that anxiety amplifies. 

My daughter is highly allergic to peanuts—off the charts allergic. Three years ago, when she was in kindergarten, I frequently received calls from her school that she had experienced a topical allergic reaction. Given the severity of her allergy, and the fact that they sold PB&Js in the cafeteria, this didn’t come as a surprise.

Her school had archaic food allergy protocols and procedures in place, and didn’t seem to grasp the severity of the situation. Their cafeteria was effectively a minefield for my daughter!

You should know: I'm not the kind of person that accepts the things I can't change. I change the things I can't accept. And I couldn’t accept living in constant fear for my daughter’s life.  

Fast forward three years, and her school district now has a food allergy awareness program in place and is making considerable strides to keep children with food allergies safe. 

How did this come to be? A few things happened. 

First, I engaged the school nurse. When I initially relayed my concerns, her response was, "We have food allergy guidelines in place." Now, let’s be clear, these guidelines weren’t routinely followed or required—they were recommendations. I felt for her, because she truly didn’t seem to grasp the seriousness of the situation; in her defense, she grew up in a time when food allergies weren’t an epidemic. 

It was then I realized what was missing—a true understanding of what was going on. People don’t know what they don’t know! 

In my heart I know that no parent, teacher, or school nurse would ever do anything to intentionally harm my child, yet there seemed to be a serious lack of awareness around the severity of her food allergies. 

My first goal was to make sure the district removed PB&J sandwiches and nut products from school cafeterias. After that, I focused on promoting education and awareness within the schools, and with children and their families. We needed to foster an environment of inclusivity, which I felt was sorely lacking. 

I’ve learned that adults find change difficult, but children usually embrace it!

Change is usually most successful with smart, slow, and strategic execution. We published a series of educational articles in weekly school newsletters and integrated food allergy awareness and education into school events (e.g., PTA meetings, school assemblies, book fairs, harvest days, etc.). We also organized book readings and games to coincide with national Food Allergy Awareness Week

The children embraced learning how to keep their allergic classmates and friends safe, and in turn, educated their parents by sharing what they learned in school. Coming home from school with a sticker that said, "I kept Sophia safe today,” prompted their parents to ask about the meaning of the sticker, and often began a conversation about food allergies. If mom or dad was making a PB&J sandwich for lunch the next day, their children might say, "Don’t make me that! It’s not safe for my friend!"

There are eleven elementary schools within our school district. We piloted this program at one school, then another, and another, and soon our awareness and education program was implemented throughout the entire district! In the meantime, we collaborated with the district administration to update and rewrite the food allergy protocols and procedures, and built food allergy education into lesson plans. We also created a district-wide food allergy informational brochure for incoming and existing families within our schools. 

Our efforts weren’t met without resistance, and these achievements took time and patience. I’ve learned that to work collaboratively and effectively with schools and other parents, it’s important to be clear and explain the WHY. Why are we removing peanut butter from schools? Why is my daughter unable to bring in cupcakes for her birthday? From experience, once someone understands the WHY, they often embrace the change. In turn, they often become a food allergy advocate themselves! 

- Abbe Large 

 

Abbe Large is a Senior Vice President at Lenox Advisors. She has held leadership positions within her school district’s PTA and currently sits on her town’s education committee. Abbe is a minority investor in Allergy Amulet.

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Airborne Food Allergens—What’s the Risk?

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When we hear stories of serious allergic reactions to food, they often involve someone unknowingly ingesting a food that contains their allergen. Gut-wrenching stories like the grilled cheese that killed a NYC preschooler, the Indian takeout food fatality in England, the woman left paralyzed after ingesting peanuts while traveling in Budapest, and the sesame-related death of a teenage girl after eating a Prèt A Manger baguette at an airport. 

For many of us, these stories hit a bit too close to home.

In these cases, the food was ingested—but what happens when the allergen goes airborne?  

In January, a story about an 11-year-old New Jersey boy rocked headlines after he died from what authorities believe was an allergic reaction from breathing in the steam from fish cooking in the kitchen. 

While rare, allergic reactions to aerosolized allergens do occur. 

According to Dr. John Lee, Clinical Director of the Boston Children’s Food Allergy Program, most airborne reactions probably occur due to particles of protein that rise into the air when food is actively cooked, and then they’re inhaled. “I’ve had patients describe their throat itching while around peanuts, or reported mild reactions on airplanes, but most airborne reactions typically result from particles of protein rising off heated foods.” For example, he offers someone with a shellfish allergy walking into a seafood restaurant, or a wheat-allergic patient standing near boiling pasta.

According to the American Academy of Allergy, Asthma and Immunology, exposure to airborne food allergens does not typically result in anaphylaxis; however, these airborne particulates can cause symptoms such as itchy eyes, a runny nose, a cough, congestion, and difficulty breathing.

Airborne food particulates can also trigger two forms of occupational asthma: 1) baker’s asthma, following exposure to powdered allergen substances such as dried egg powder, soy flour, or wheat flour during baking; and 2) crab asthma, which is caused by dust and fume exposure from steaming, cooking, or scrubbing crab in processing plants. Both forms of asthma are considered allergic diseases because of the role allergenic proteins play in the respiratory response.

Notably, airborne allergic reactions aren’t limited to food. In at least one case, a chemical fragrance was the culprit. After a teenager named Brandon started developing headaches and hives at school, he connected his symptoms to Axe Body Spray. His allergy to the spray worsened, eventually leading to anaphylactic shock. Laws protecting manufacturers like Axe barred disclosure of the spray’s full ingredients list, preventing his family from discovering the allergenic trigger. Brandon had to leave school because of the exposure risks. 

Suffice it to say, airborne allergenic reactions extend beyond food. 

Most reported airborne reactions, however, continue to stem from common allergenic foods. Since peanut is the number one trigger of food-related anaphylaxis, the extent to which peanut particulates pose a risk is a common question in the food allergy community. 

In a 2003 study of 30 children with severe peanut allergies, researchers examined the extent to which inhalation and skin exposure elicited a reaction. For the skin test, one third of children experienced reddening or skin flares after peanut butter was pressed to their skin for one minute. Conversely, no child experienced respiratory symptoms after sitting in close proximity to three ounces of peanut butter for ten minutes.

The topic of aerosolized allergenic reactions has stirred enough controversy among food-allergic travelers that Southwest Airlines stopped serving peanuts on all flights starting in August 2018, and JetBlue does not serve peanuts on its aircrafts.

Food for thought? We think so. Have you experienced an airborne allergen causing an allergic reaction? Please share your experience if so! 

- Meg and the Allergy Amulet Team 

This piece was written by the Allergy Amulet team and reviewed by Allergy Amulet advisors Dr. John Lee and Dr. Jordan Scott. 

Dr. John Lee is the Clinical Director of the Food Allergy Program at Boston Children’s Hospital. Dr. Lee is widely recognized for his work in food allergy, and his commitment to patient health. 

Dr. Scott is an allergist/immunologist and operates several private allergy clinics throughout the Boston area. He is on the board of overseers at Boston Children’s Hospital, and the past President of the Massachusetts Allergy and Asthma Society. 

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Intuitive Eating + Food Allergy

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Proper nutrition, much like medicine, does not have a one-size-fits-all approach. In fact, what works for one person may not work for another. This is also why fad diets often don’t work. 

One of the more recent nutrition concepts that extends into counseling practices is Intuitive Eating, which encourages us to steer away from the diet mentality, and instead embrace positive lifestyle behaviors. The authors and dietitians behind Intuitive Eating, Evelyn Tribole and Elyse Resch, first wrote about the concept in 1995, publishing what is today the best-known book for helping rebuild healthy body images and restoring normal healthy eating behaviors. 

When I hear diet talk from friends, family, and clients, I’m often conflicted. On the one hand, I applaud the perceived need to change. On the other hand, I know scientifically that diets don’t often work; behavior and lifestyle changes are what stick. There is an overwhelming body of scientific literature that offers insight as to why our bodies fight diets. So if diets don’t work, then how do we make healthier, long lasting, and positive lifestyle changes? Here’s where Intuitive Eating comes into play. 

I like to compare Intuitive Eating to your best self-care day—it’s listening exactly to what your body needs, accepting it, nourishing it, and moving on. It’s giving your body the nutrients it needs while listening to your internal cues. 

The following are the 10 main ideas behind Intuitive Eating: 

1.   Reject the diet mentality. Get rid of the ideas and materials (books, magazines, etc.) that encourage and offer false hope of quick weight loss. 

2.   Honor your hunger. Physically and biologically feed your body the adequate energy it needs to function properly. Build trust in yourself that your body will tell you exactly what it needs. 

3.   Make peace with food. Give yourself permission to eat and abolish food rules. No foods are forbidden (unless you have a food allergy, that is). More on that later!

4.   Challenge the food police. Don’t applaud yourself for only eating x number of calories or feel guilty for eating that piece of birthday cake. 

5.   Respect your fullness. Really listen to the body signals that tell you you’re full. 

6.   Discover the satisfaction factor. Savor the foods that bring you joy and pleasure. You’ll typically find you end up eating less of that “forbidden” food because you took the time to savor it. 

7.   Honor your feelings without using food. Stress, anxiety, and boredom are some of the feelings that are often responsible for triggering emotional eating. Instead, pay attention to your emotional responses. 

8.   Respect your body. Accept your genes. You would never force your feet into the wrong shoes. Give your body the respect it deserves. 

9.   Exercise. Focus on how you feel while working out. If you hate it, try something new. Look at the true motivation behind your workout—is it to lose weight? Feel an endorphin high? Reduce stress?

10.  Honor your health. Make food choices that honor your health, but that also make you feel good. You don’t have to have a perfect diet. Remember, it’s progress over time that matters, not any one meal or one day that will make the difference. 

Over time, I’ve grown curious as to how food allergies, intolerances, and other medical conditions might apply to a philosophy like Intuitive Eating, which challenges us to actively listen to our bodies’ dietary needs. Initially it seemed counterintuitive to combine the two: one teaches us that we should intuitively feed our body what it needs/wants, while the other requires us to avoid certain foods for medical purposes. 

But what if Intuitive Eating could unlock greater freedom, patience, and kindness towards their bodies for those with food allergies?

Intrigued? Let’s dig into the details. 

Diets don’t work for a variety of reasons. Scientifically, when you restrict food or are on a diet, your brain produces something called neuropeptide Y, which triggers your brain to crave carbohydrates. Familiar with that feeling you get at 11am because you skipped breakfast? Pay a little thank you to your brain. It’s physically reminding you that you haven’t eaten and that you need to feed it carbohydrates because they are our body’s primary and preferred source of energy. When the body is in a deficit, we are physically depriving it of the calories and nutrients it needs to function. 

This isn’t to say all diets are bad. In particular, medically-prescribed diets are often extremely helpful and medically necessary for those suffering from food allergies, intolerances, and other medical conditions. However, many diets end up depriving your body of the vital nutrients it needs to function properly. The more you deny your hunger and fight your natural biology, the stronger and more intense these food cravings can become. 

If you’re reading this, there’s a good chance you either suffer from a food allergy or intolerance, or care for someone who does. Food allergies force us to eliminate foods or food groups to keep us safe. Intuitive Eating encourages us to ditch all food-related rules. How do you reconcile the two? What about challenging the idea that food allergies are a limitation, and instead, thinking of your food allergy as part of your body’s intuition? By reframing the way you think about your food allergy, you acknowledge your food cravings and indulge in the foods that your body CAN tolerate. Craving ice cream but have a dairy allergy? Search out dairy-free ice cream alternatives—there are a lot of comparable ones out there that are delicious and will do the trick. This way you honor your cravings, while respecting your body’s intuitive dietary boundaries. 

If you’re curious to learn more about Intuitive Eating, here are a few resources:

1.     https://www.intuitiveeating.org

2.     10 principles explained in depth: https://www.intuitiveeating.org/10-principles-of-intuitive-eating/

3.    Additional resources: https://www.intuitiveeating.org/resources/articles/

Rebecca Noren is on the Allergy Amulet health advisory board and works with chef Ming Tsai. Rebecca holds a master's degree in nutrition and is a registered dietitian. She is dedicated to bringing her expertise in public relations, marketing, and culinary production to the intersection of food, health, and food allergies. 

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Humans Are Pooping Plastic

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Got your attention? Thought so. 😉

If you’re thinking, What does poop have to do with food allergies? First, food allergies affect our health and diet, which implicates our digestive tract. Number two, research is increasingly looking to the gut for answers around the rise in food allergies. For these reasons, we thought the topic was a-poo-priate. 💩

This past summer, Austrian researchers reported that the deluge of plastic entering our environment is now entering our stool. That’s right—plastic has been discovered in 114 aquatic species90% of seabirds, and now, evidently, in us. 

As part of this first-of-its-kind study, researchers followed eight volunteers from a handful of European countries, tracked their consumption habits, and then sampled their stool. Small fibers of plastic—known as microplastics—were found in all participants’ feces to varying degrees, amounting to the first documentation of plastic in human feces to date. The findings confirmed what many scientists have long suspected: we’re eating plastic.

Scientists are now grappling with the health implications, which are largely unknown. Microplastics are capable of damaging the reproductive and gastrointestinal systems in sea life, but little is known about their impact on humans.

On average, 13 billion microplastic particles enter US waterways every day through the municipal water supply. An estimated 8 million tons of plastic enter the oceans each year. The latter bulk of plastic gets broken down into smaller bits, which are eaten by smaller organisms, and make their way up the food chain.

How does this relate to the food allergy and intolerance community? 

First, we know that immune health is closely tied to food allergies and intolerances. Experts have found that plastic in the gut can suppress the immune system and increase the likelihood of gastrointestinal diseases like inflammatory bowel disease. Second, research has shown that exposure to phthalates, which are found in many plastics, can increase childhood risk of allergies. According to the lead researcher of the study, Dr. Philipp Schwabi: “[my] primary concern is the human impact… especially [on] patients with gastrointestinal diseases.” He notes that “the smallest particles are capable of entering the bloodstream, the lymphatic system and may even reach the liver.”

While research on the human impact of plastic is still early, one thing is clear: plastic may be harming our immune systems, which could potentially implicate our body’s ability to tolerate and digest certain foods.

We’re eating our waste—that much is clear. Now the question is, what are we going to do about it? 

-      Abi and the Allergy Amulet Team 

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Roses are Red, Violets are Blue, Sugar is Sweet, and Food Allergies Can Be Sweet Too

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Ah, Valentine’s Day. For some, this day provides a great excuse to press pause on the stressors of life and take time to celebrate the ones you love. For those with food allergies and intolerances, however, this day can bring about a lot of anxiety. 

If you’re a food allergy parent like me, here’s what probably goes through your head: Will my child be given a valentine that contains their allergen? What will be served at school? Will they feel comfortable speaking up to ensure the treat is safe? Why does this holiday have to center around food?!

If you are celebrating Valentine’s Day as a food-allergic adult, it can be just as stressful. Valentine’s Day often comes in the form of chocolates, or a splurge on a nice dinner and dessert (in our house that means sushi)!

We get it guys. This holiday can be hard. That’s why we’ve teamed up with our friend chef Ming Tsai to bring you a homemade sweet treat this Valentine’s Day. 

Easy? Check. Healthy? Check. Top eight allergen free AND gluten free AND sesame free? Check check check. 

Here’s Chef Tsai’s recipe for Strawberry Coconut Sorbet (note: this recipe contains coconut). 

Strawberry Coconut Sorbet (serves 2)

- 1/2 cup frozen strawberries

- 1/2 cup coconut milk

- 1/4 teaspoon lemon zest

- 2 tablespoons unsweetened coconut flakes

Add strawberries, coconut milk, and zest to a blender and blend until just smooth. Serve immediately and garnish with coconut flakes or cacao nibs (or whatever your heart desires 😍).  

Enjoy friends!

XOXO, 

Meg and the Allergy Amulet Team 

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More Adults Have Food Allergies Than Previously Believed

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Last month, we shared the latest research on food allergy trends among children. The study found that approximately 7.6%—or 6 million—kids in the U.S. have a food allergy. Now we have more breaking food allergy news to share—this time concerning adults.

In early January, The Journal of the American Medical Association (JAMA) published a study on the prevalence of food allergies among U.S. adults. What did they discover? Approximately 1 in 10 American adults (~26 million) have a food allergy. 

This brings the total number of Americans with a food allergy to approximately 32 million, more than doubling the food allergy population! Previous estimates had the population at roughly 15 million Americans.

Below are a few more key findings:

  • Adult onset of food allergies is becoming more common; nearly half of food-allergic adults have at least one food allergy that began in adulthood.

  • The most common allergies among adults are shellfish (7.2 million), milk (4.7 million), peanuts (4.5 million), tree nuts (3 million), and fin fish (2.2 million).

  • Food allergies occur more often in non-white adults than in white adults.

  • Nearly 40% of adults with a food allergy reported at least one food allergy-related ER visit in their lifetime.

  • Adults ages 30-39 had higher rates of food allergy than younger adults. Adults over 60 had lower rates than other adult age groups.

Dr. Ruchi Gupta and her team at Northwestern University conducted both the adult and pediatric studies. Consistent with their research on children, Dr. Gupta’s team applied a stringent symptom methodology, which looked at the frequency, type, and severity of allergy symptoms as part of diagnosis to filter out those who more likely had a food intolerance. 

One thing is clear: food allergies are on the rise, and we need greater education, awareness, and research on this troubling health trend. 

A big thanks to Dr. Gupta and her team for their ongoing efforts to shine a light on the rising food allergy epidemic in our country.

- Susannah and the Allergy Amulet Team

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Navigating Food Allergies as a Teen

Most social gatherings as a teenager involve food. School dances involve going out to eat with your friends before the dance, and eating snacks during the dance. Going on a first date often involves going out to dinner or to a movie theater, where food is always present. Birthday parties almost always involve cake and ice cream during the celebration. We even have a holiday every year to celebrate being thankful for a plentiful harvest: Thanksgiving. All of these gatherings involve some sort of interaction with food. 

When you have food allergies, however, these common social gatherings are not just a matter of socialization. They are a matter of survival.           

I’m a teenager that’s just trying to fit in and be as “normal” as everyone else. This can make speaking up and asking for an alternative food option a scary task. What if they say no? What if they force me to leave? Worst of all, what if I have a reaction? All of these questions fly through my mind when I’m invited to hang out with friends, extended family, or to any other social gathering.    

I used to “make plans” or say I was busy just so I could avoid the awkward first communication of “oh sorry I can’t have that.” Though I’ve had some extremely positive social experiences that have made it easier to manage my food allergies! I remember one birthday party specifically. I was talking to my friend’s mother about my allergy and how I was going to avoid the birthday cake. Out of nowhere, she surprised me with a 100-piece bag of Starburst. She explained that my friend wanted to make sure that I could enjoy his birthday even though I couldn’t eat the cake. 

Dating can also bring about challenging situations. My freshman year of high school I took a date to watch a varsity high school soccer game. It was half time and she was hungry. I had eaten before the game, in order to prevent getting hungry at the game and being tempted to eat something there. We went up to the concession stand and she ordered a Snickers bar. Because I have a peanut allergy, this was a very awkward situation. Before we sat down, I reminded her of my allergy and she felt so bad—but I felt even worse. It was our first date and I didn’t want to do anything that would scare her. She quickly ate her Snickers bar and washed her hands.

Dating often involves food. Inevitably you will end up in situations like picking a restaurant or a snack at a movie theater, which is usually a good time to explain your allergy (and explain your choice of snack or restaurant). If your partner truly wants to be in a relationship with you, they’ll understand why you go to the same Mexican restaurant every week: it’s a safe choice for you. 

As a teenager, I’ve learned to advocate for myself and not be afraid to reject food that doesn’t have a label or is “so delicious it’s worth dying for” (yes, I’ve had people that didn’t know I had an allergy say that to me). While our parents advocate for us when we’re younger, as a teen they’re not with us as often, and we have to learn to be our own advocates. 

Every year I attend FARE’s National Conference and I hear a familiar discussion about the dialogue between food-allergic teens and their parents. Teens often talk about how their parents watch over them closely, and how they want to manage their allergies independently. Parents often ask me how their child can become more independent, and to that I say that they should give their teenager more of a chance to self advocate. I’ve always taken responsibility for keeping track of my auto-injectors, asking waiters about my allergies at restaurants, and speaking up in situations when I don’t feel comfortable. Teens don’t always do those things in front of their parents because their parents do it before the teen has the chance to.

This is a two-way street that involves cooperation and trust on both sides. As dangerous as the world can seem for a teen managing a food allergy, most food-allergic teens have looked that danger in the face for their entire lives. It isn’t going to stop them from living life to the fullest. Sure there will be times of difficulty, but that difficulty is only temporary. 

The one thing I want everyone to take away from this blog is this: speak up. 

Don’t be afraid of any challenge that comes your way, food allergies or not. Through my food allergy advocacy volunteer efforts I’ve met senators, mayors, CEO’s, entrepreneurs, and other amazing people with inspiring stories. Many have said that an issue becomes more impactful when a teen speaks up about it. If a teen is concerned, shouldn’t adults be as well? Every obstacle you face and every challenge that you meet can be overcome. Your voice is a powerful tool, so don’t be afraid to use it! 

 

Daytona Hodson is junior in high school and has a life-threatening food allergy to peanuts. He’s on his high school debate team and he’s a member of FARE’s Teen Advisory Group. Daytona has contributed to articles and spoken on panels for both FARE and Spokin. 

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Breaking Bread

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This past Christmas Eve, I listened to the soft sounds of Ave Maria and Silent Night waft through candlelit pews. My father has sung in a church choir ever since I was a child, like his father before him, so from a young age I was instilled with an appreciation for robed singers harmonizing centuries-old Latin hymns. I’m also a sucker for Christmas carols. 😉

As the communion bread was passed around among the pews, I thought about people who could not eat the bread—not because they weren’t baptized, but because they were allergic or intolerant.

Growing up, our family belonged to a small stone Episcopalian church on a grassy hill that could have been pulled out of the Scottish Highlands or a child’s storybook. At one point, we had a female priest, which was something of a rarity back then. Sermons routinely invoked global current affairs and the common values shared across religions, and everyone, regardless of creed, was welcome. We were a progressive church. The communion bread was also baked in the church kitchen and tasted heavenly. I’d walk up to the altar, cup my hands, and receive a hunk of doughy bread, which I’d dip into a chalice of wine. I can’t remember ever worrying about my food allergies during Sunday communion growing up. Plain bread as a kid was always considered safe. That has since changed. 

Today, 1 in 13 kids has a food allergy, and millions more have a gluten intolerance. We live in a different world from a couple decades back. The communion bread I ate growing up definitely contained wheat, although I never knew anyone that had a problem with gluten back then. These days, however, it seems as though at least one person at every dinner party is gluten-free. To accommodate, many churches now offer gluten-free bread with communion.

The rise of gluten-free products has been a double-edged sword for the nut-allergic like me: on the one hand, it has helped increase awareness and accommodations for those with food allergies and intolerances; on the other hand, nut substitutes (like almond flour) for wheat have become increasingly common. 

Years ago, I admittedly thought the spike in gluten-free products was more fad than the result of a growing severe medical condition. That all changed when I spoke to a woman at a food allergy conference years back who relayed the harrowing experience of her young son and how their family discovered his gluten intolerance. On Sundays, her son would develop debilitating migraines that would keep him bed ridden for days. As she described her experience, and his symptoms, I was horrified. Her family connected the dots back to the communion bread. “Gluten did that to your son!?” I thought. Unfortunately, their church wasn’t able to accommodate his gluten intolerance, and her family was forced to join another parish. 

At the Scottish storybook church, if you declined the bread or wine, you could fold your arms across your chest and receive a blessing from the priest. At the church I attended this Christmas Eve, communion bread was passed between parishioners in pews on trays, and wine (which turned out to be grape juice), was served in small plastic cups. Surprisingly, an individual blessing did not appear to be an alternative option. You’d think a simple blessing like this would be an option at all churches, allowing everyone to partake in communion and ensuring that the food allergic and intolerant aren’t left out.

Religion, like food, should bring people together. Breaking bread has long been a symbol of community and peace. That community piece is lost, however, if everyone isn’t afforded a seat at the table. 

- Abi & the Allergy Amulet Team

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