As Food Allergies Rise, Local Moms Fight for More Research and Awareness

Food Allergies

The statistics on food allergies in children in the U.S. are startling — and on the rise.

A study by the Centers for Disease Control and Prevention reports a 50 percent increase in the number of children with food allergies between 1997 and 2011. That’s one in 13 children in the U.S. (or two in every average American classroom) who suffers from a potentially deadly condition.

Dr. Jennifer S. Kim, a pediatric allergist with NorthShore University HealthSystem, says the top three biggest culprits in the food chain are milk, eggs and peanuts, with soy, wheat, tree nuts, fish and shellfish close behind.

“Most kids (about 80 percent) outgrow milk, egg, wheat and soy allergies,” says Dr. Kim, “However, peanut, tree nuts, fish and shellfish tend to persist into adulthood.”

Anaphylactic shock related to severe food allergies can come on within minutes of exposure, and ranges from mild itching and swelling to hives to blocked airways that can cut off breathing. If epinephrine treatment is not administered immediately, the result can be death.

So what’s causing this marked increase in food allergies, and what can parents do to protect their kids?

Scott Riccio is the senior vice president for education and advocacy for Food Allergy Research & Education (FARE), a national organization that works on behalf of the 15 million Americans who suffer from food allergies, including those at risk for life-threatening anaphylaxis. Riccio says that while there are several theories, scientists still do not have a definitive explanation for the dramatic spike in food allergies in recent years.

“There is some general agreement in the scientific community that the rise could be attributed to a combination of genetic and environmental factors,” says Riccio.

This is little comfort to those parents waging a daily battle trying to keep their kids safe — and alive.

Meet a few Chicago-area moms who are using their talents to raise awareness, affect change and give hope to others struggling to navigate life with a severe food allergy:

Caryn Tatelli knows all too well the frightening symptoms of anaphylaxis. Her daughter Susan, 13, has severe contact and airborne allergies to tree nuts, peanuts and soy, and has suffered several attacks since she was first diagnosed. Tatelli writes about her journey to keep Susan safe on her blog, Eating Peanut.

In a recent post, Tatelli recalls several heartbreaking cases where children died as a result of anaphylaxis, and strongly stresses to readers the importance of keeping an epinephrine pen with them at all times.

“For Susan, her fanny pack and now her purse have been such a key part of her life that she feels almost naked without them,” writes Tatelli. “When Susan sleeps, her purse is on her pillow which used to sadden me that she felt the need to have it by her even in her sleep, but now, it reassures me.”

Tatelli believes parents need to teach children to become their own self-advocates, giving them tools they can use to stay safe throughout their lives.

Susan herself has taken up the cause of raising food allergy awareness, and this year volunteered to participate in a clinical trial called PRROTECT, testing the efficacy of the drug Xolair in rapid desensitization to peanuts. This also meant Susan was putting herself at risk of an anaphylactic attack by eating peanuts, and Tatelli describes the process as “difficult beyond words.”

“Susan understood that if she dropped out of the trial, scientists would never understand how children might be helped,” says Tatelli. “She was always hoping for the best for herself and that her continued participation would be for the good of many.”

Last summer, Susan created a PSA as part of a Girl Scout project chronicling her often difficult experiences during the trial, even filming herself during an anaphylactic attack to show how to self-administer epinephrine. The training video, “How To Stay Alive,” is available on YouTube, and has been shown to several area groups. To date, Susan has been able to consume 10 peanuts a day without an attack, and Tatelli is hopeful that one day she will be able to test negative for the allergy.

“The results have been life-changing, but I do not for one minute regret our participation,” says Tatelli.

Susie Hultquist, a Chicago mom of three whose oldest daughter, Natalie, 12, is severely allergic to peanuts and all tree nuts, says Natalie’s initial diagnosis at age one left Susie and her husband feeling sad, angry and in denial. Reaching out to other parents in the same boat was the first step Hultquist took by joining a local food allergy support group.

“I had to realize how to protect my child both physically and emotionally,” says Hultquist.

Feeling helpless was not an option for the public equity investor whose entrepreneurial spirit quickly kicked in when she realized the inadequacy of funds being raised toward a cure.

“I was stunned there was no one raising large dollars toward this,” says Hultquist. “For me, I just knew I needed to help solve this.”

In 2008, Hultquist and fellow moms Suzanne Friedland and Eun Lee, along with their husbands, collaborated to create the first Chicago-based fundraiser, aimed at raising food allergy awareness and education. Tickets to the now annual gala event sold out instantly, and more than $1.4 million was raised toward support of FARE in the first year. (More information on this year’s spring luncheon in Chicago is included at the end of this article.)

Hultquist eventually co-founded a local chapter, FARE Chicago, and says the key to support is connecting with others.

“It’s one of the most isolating times you can go through, but no one is really alone in this,” says Hultquist.

It’s evident that Hultquist puts her money where her mouth is. Her latest endeavor is a native mobile app (now in the development stage) that will help users fighting food allergies to meaningfully connect, and will officially launch in late spring 2016.

Denise Bunning, co-chair of this year’s FARE spring luncheon, has been a pioneer in the fight to raise food allergy awareness. In 1997, she felt helpless, isolated and alone after both of her young sons were diagnosed with severe and complicated food allergies.

Bunning is also the co-founder of Mothers of Children Having Allergies (MOCHA), a local support group and website dedicated to sharing information and helping parents give their children the education, encouragement and enthusiasm they will need to live their lives to the fullest.

“One of the reasons we started MOCHA was to provide information that was not readily available to us 20 years ago,” says Bunning.

MOCHA now has more than 400 members in the Chicagoland area, and holds five meetings a year in Skokie with featured speakers. The MOCHA website is a wealth of information for parents of kids newly diagnosed with food allergies.

“What we would most like to share is that there is hope and support,” says Bunning. “There really is comfort in learning how others have navigated the rough terrain before us.”

Another challenge for families with food allergies is the prospect of dining out.

A simple family dinner outing can become a deadly foray should those dealing with severe food allergies enter a restaurant whose staff is ill-equipped to ensure an allergy-free environment. Some parents we spoke with told harrowing tales of dining disasters, leading many to stop going to restaurants.

“Waiters will often say to us, ‘Oh this dish is gluten-free,’ thinking that’s an allergy catch-all phrase,” says April Diehl, a Glenview mother of three whose daughter, Caroline, 8, is severely allergic to eggs, fish and nuts, but not wheat or gluten.

During a recent meal at a restaurant while traveling out of town, Diehl and her family were especially frustrated by the waiter’s lack of knowledge of ingredients and complete refusal to ask the chef more questions. “My daughter was left with pre-packaged oyster crackers for dinner!”

Elizabeth Schuler is a Chicago-based digital strategist for the hospitality industry and mother to 10-year-old son Gabe, who has severe allergies to dairy, eggs, peanuts and fish. She says the problem lies with inconsistency within the food industry, and hopes more will be done to make restaurants once again an enjoyable and safe haven for all diners.

Schuler, who grew up in a four-generation family-run restaurant business in Michigan, has her fair share of culinary expertise and a deep appreciation for fine dining. As a gourmet cook and food blogger, her son’s diagnosis was not only frightening, but required huge lifestyle changes in order to make her kitchen an allergy-free safe zone for her son.

“I can’t imagine what a burden it is to the parent that has little food knowledge,” says Schuler, who always had her finger on the pulse of Chicago’s culinary scene, gaining much of the inspiration for her blog recipes by frequenting Chicago’s new and notable restaurants. Gabe’s diagnosis meant dining out would never be the same again.

“The biggest and most frequent issue we have is ambivalence,” says Schuler. “Servers don’t always write down his allergies or they don’t know anything about the ingredients in the food.”

Schuler cites many examples of situations she’s encountered in restaurants when wait staff and even chefs made errors that could have had life-altering consequences for her son if not for her watchful eye.

Schuler seeks to parlay her experience in the restaurant industry and vast knowledge of food allergies by offering her services as a food allergen consultant to the restaurant and catering industry. She suggests, at minimum, every restaurant or food establishment have a basic food and allergy training program in place from the front of the house up, keep designated allergen-free space and equipment in the kitchen to avoid cross-contamination, and consider the ingredients used during the menu development and planning process.

“If you treat an allergen customer with respect and care, you have a customer for life,” says Schuler. “They will be loyal like no other customer when they know they can go out for a meal, have a glass of wine, relax and not worry if their child will be exposed to a life or death situation.”

Riccio says restaurants have come a long way in the past 10 years, and believes food allergy awareness within the restaurant community is a welcome trend that will continue to rise.

“FARE is committed to helping educate the restaurant industry, and has teamed up with the National Restaurant Association and MenuTrinfo, which both provide comprehensive food allergen awareness training designed to educate restaurant employees, from hostesses to line cooks,” says Riccio.

Before you dine out, experts suggest the following tips:

  • Call ahead; ask to speak to a manager and talk to them about your allergy.
  • Present a chef card (printed in English and up to nine other languages) to your server when you arrive at the restaurant, and ask them to show it to the chef. The wallet-sized card lists your food allergies and states that your food must be cooked in a clean and safe area to avoid cross-contact. Order one online.
  • Be prepared. Never leave home without your epinephrine auto-injector.

Parents we spoke with weighed in, giving us their go-to list of some of their favorite allergy-friendly local restaurants in Chicago and the North Shore. MIB Note: Every dining facility should be vetted for your particular food allergen.

North Shore:

Chicago:

FARE Spring Luncheon

FARE
FARE CEO James Baker

FARE’s 5th Anniversary Spring Luncheon will be held May 6 at the Four Seasons Hotel Chicago and provides a great opportunity to support the organization and connect with others passionate about improving the quality of life for those with food allergies. Honorees at this year’s luncheon are Eric Santoyo, banquet chef, and Scott Gerken, pastry chef, at the Four Seasons Hotel Chicago. Holly Robinson Peete is this year’s keynote speaker, chosen because, in addition to being a successful actress, TV personality and writer, “she also happens to be the mother of two kids with food allergies,” explains Dana Morris, FARE director of community engagement. “We found her relatable to our audience because she understands the struggles of food allergies in everyday life.”

Joining Denise Bunning as luncheon co-chairs are Linda Levinson Friend and Karin Teglia. Friend and Teglia told Make It Better why getting involved with FARE was so important to each of them.

Linda Levinson Friend:

“I was introduced to FARE (originally FAI) while searching for gluten-free summer camp options for our then anaphylactic 8 year old. Since that time, 10 years ago, our son enrolled in and completed a FARE-funded FDA-approved food allergy study lead by Dr. Kari Nadeau at Stanford University. Because of doctors like Kari combined with FARE funding, our son now lives a life free of worry regarding cross contamination and deadly allergic reactions. Now I just get to worry about normal teen stuff!”

Karin Teglia:

“FARE is the leading nonprofit organization focused on improving the quality of life for children and families affected with life-threatening food allergies. My personal connection is through my child who has benefited from the research, education and advocacy that FARE has funded. I am passionate about removing the life-threatening aspect of food allergies for the entire patient base.”

For more information on the spring luncheon or to register, click here.


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