To help with the initiation into the lifestyle of label reading, cooking without allergies, and navigating play dates and school life, Anaphylaxis Canada has launched an online support website – the Newly Diagnosed Support Centre.

This comprehensive, allergist-reviewed resource contains a wealth of useful information for any parent whose child has been diagnosed with a severe food allergy. Split into logical and easy-to-follow categories, the information is organized so visitors can find what they are looking for quickly.

Virtually all major topics are covered, including how to avoid allergens and reduce the risk of reaction due to cross-contamination. Other important themes include how to be prepared for, identify and respond to a serious reaction, as well as how to manage the food-related concerns of daily life – everything from hiring a babysitter to dining out and traveling with food allergies.

In a section on “Challenges,” the site delves deeper into the parent’s relationship with the food-allergic child. It acknowledges the pyschological support that can be needed, with tips about listening to your child, supporting him or her, and being on alert for issues such as bullying. There is the important reminder that, while you must help to manage an at-risk child’s safety, “remember that there is more to your child than just their food allergy”.

In short, this newly diagnosed site is a trove of information for anyone new to parenting or caring for a child at risk of anaphylaxis.

Visitors can also download free and helpful resources, such as printable anaphylaxis action plans and menu planning sheets, to aid them in reducing reaction risks in daily life. The site also features instructional webinars – with more to be posted in the months ahead.

The online information is based on the handbook “Living Confidently with Food Allergy: A guide for parents and families”, which is available as a free download through the site.

Visit the Newly Diagnosed Support Website

Nevada’s Governor Brian Sandoval signs epinephrine bill amid happy food allergy families. On the left (in yellow) is Caroline Moassessi, spokesperson for the Nevada Food Allergy & Anaphylaxis Alliance and the northern Nevada asthma and allergy support group; on the right is Susanne Stark (white jacket) of the Las Vegas parents’ support group.

The hard work of food allergy advocates is leading to real change across the United States.

In the past two weeks, Nevada, Florida, Tennessee and Oklahoma have become the latest states to pass a bill that requires schools to have “stock” epinephrine auto-injectors on hand in case a student experiences an anaphylactic reaction to a food or sting and doesn’t have his or her own medication available.

To date, more than 20 states have passed epinephrine laws or guidelines and several more are considering bills that
would allow schools to keep auto-injectors on hand in case of an emergency.

Florida, Tennessee and Oklahoma schools will now be allowed to acquire epinephrine that hasn’t been prescribed to a specific student. The Nevada legislation goes a step further, “requiring” schools to have epinephrine on hand in case of emergency.

Caroline Moassessi, spokesperson for the Nevada Food Allergy and Anaphylactic Alliance (which led the lobby for the Senate bill), explains that the requirement was discussed at length during a committee hearing. The feeling among advocates and legislators was that if auto-injectors were “allowed” but not required, “eventually, the energy around this legislation could die out,” she said.

They also didn’t want any disparity between school districts with well-off parents and those in lower-income areas. “They wanted all students to be protected, not just those schools that could afford it,” she said.

When the governor signed Senate Bill 453, making it law, “I felt as if an extra safety net was just placed under my children,” said Moassessi. “If my child requires a second dose or if something goes wrong with the first dose, I now know there is back up available and they will not be gasping for air while waiting for an ambulance. This is priceless.”

Moassessi also notes that numbers alone may make the risk of having a reaction greater in Nevada schools; the state showed a prevalence rate among children and young persons of about 9.5 percent in Dr. Ruchi Gupta’s 2012 study of food allergy prevalence. That’s considerably higher than the national food allergy average of 8 percent of children under 18.

The push to start keeping stock epinephrine began in 2011 in Illinois, after teenager Katelyn Carlson of Chicago died of anaphylaxis from unknowingly eating peanut in food at a school party. Her death led to the first stock epinephrine law – in the state of Illinois. Then in 2012, Amarria Johnson, who was only 7 years old, died in Richmond, Virginia after eating a peanut. Like Katelyn, she didn’t have an epinephrine auto-injector at school, and she died on the way to hospital. Virginia, too, became an early adopter of a stock epinephrine law.

The needless loss of these two girls sparked widespread interest in stock epinephrine laws and guidelines. Local  food allergy support groups and FARE, the national allergy organization, have been lobbying since for more laws or guidelines to prevent any further tragedies.

It should be noted that a school’s stock auto-injectors are not meant to replace children’s own auto-injectors, but rather are there in case of an unexpected circumstance, such as a new allergy, missing device or allergic reaction requiring an extra dose.

For others looking to lobby their state on the stock epinephrine issue, Moassessi stresses the importance of collaboration. “Uniting parents statewide and creation of our working group – which included school nurses, the pharmacy board, physicians, Mylan Specialty (with its four free EpiPens for schools program), and the various nursing, school  and teachers’ associations – this was key to creating legislation that would be successful.”

Red meat allergy is especially unusual in that it is triggered by a sugar, rather than a protein as is the case with other food allergies. According to a new study published in the medical journal Pediatrics, in some areas of Virginia as many as 15 percent of children were shown to have allergy antibodies to this sugar (called alpha-gal), which can be found in beef, pork, lamb and even cow’s milk.

University of Virginia researchers suggest that saliva from the Lone Star Tick (Amblyomma americanum) is likely triggering the production of the IgE allergy antibodies to alpha-gal. This results in an immune system that is primed to react to the foods in question.

For their study, the researchers tested 51 children between the ages of 4 and 17 who had a history of delayed anaphylaxis (a characteristic of meat allergy), or who had experienced hives, with an unknown cause. They found that 45 of the patients had IgE antibodies to alpha-gal – and a majority had experienced a tick bite within the past year that had itched and persisted.

“We were surprised by how many kids were having reactions when we started looking in pediatric clinics for it,” Dr. Scott Commins, lead study author and an expert on alpha-gal allergy, told ABC News. “Nearly 50 percent of the kids in our study ended up in the emergency department.”

Back in 2009, Commins and Dr. Thomas Platts-Mills first reported on delayed-onset anaphylaxis being caused by alpha-gal. Patients, who had previously been able to eat meat without any issues, were experiencing anaphylaxis and hives three to six hours after eating beef, pork or lamb.

The pair then discovered a relationship to bites from the Lone Star Tick. People with this allergy tended to live in parts of the Southeastern United States where this tick was found, and tended to have a recent history of tick bites. However, Commins notes that this allergy has also been found in areas nowhere near the Lone Star Tick, including Australia, France, Germany and Japan.

It remains unclear why the reaction doesn’t occur immediately, as other food reactions tend to, but the answer may have to do with the fact the allergen in this case is sugar, not a protein, and may be altered during the digestive process. Commins suggests the amount of fat in the food is related to likelihood of reaction, so when it comes to cow’s milk the risk is lower, but still present.

The next step for this research is to explain why these reactions only occur after a delay, and also to determine what in the tick saliva is responsible for causing the allergy, and exactly what the mechanism is behind this phenomenon.

The better news for those who’ve suddenly had to swear off meat is that Commins says the allergy will wane in many individuals if further tick bites are successfully avoided.

See also:
• Author John Grisham on his meat allergy
• CDC’s tick bite prevention tips

Dr. Brett Greenberger vividly recalls the dream vacation that imploded. Four years ago, the Baltimore psychiatrist and his wife Emily, a social worker, planned a Caribbean getaway for the family – including their three kids and his parents. Since their daughter Lily, then 5, has serious allergies to peanuts and nuts, the couple researched staying in a condo on the Leeward Island of St. Kitts, figuring they could do their own cooking and ensure the food was safe.

They looked into flights. The times worked well with American Airlines, which doesn’t serve peanuts, so the next step was to inquire whether nuts would be served on these particular routes. “We were assured they would not be,” says Greenberger. So they booked the seats and prepaid the condo. On their travel day, the flight from Baltimore to Miami went well. The family checked in at the ticket counter in Miami – just to confirm that nuts wouldn’t be served on the flight to St. Kitts.

The first hint of trouble came when a supervisor responded that this was up to the crew. When the Greenbergers headed to the entranceway of the plane and began to speak to a flight attendant about Lily’s allergies and previous assurances, she told them that nuts were being baked, as they spoke, in the front ovens to be served in first class. The couple immediately noticed the strong aroma.

Next, the pilot and gate supervisor were there, telling them that the snack service could not be changed and further, the pilot felt their child and her serious allergies presented a flight risk to the whole plane. With Lily now sobbing, the Greenbergers say they were not allowed to board.

So could they get another flight? Not to the Caribbean. The airline’s representatives said they could fly them elsewhere but heated nuts would be served in first class on all St. Kitts flights. “Multiple people from the airline said there would be no issue with nuts, then one individual and the pilot made the decision not to accommodate or problem-solve in any way. It was just not fair,” says Greenberger.

These are turbulent times for North Americans traveling with peanut or nut allergies. On the upward bounce, some airlines are taking positive steps forward. JetBlue and Southwest Airlines often receive positive reviews for allergy awareness, and Canadian airline WestJet has become the shining star of food accommodations. (WestJet doesn’t serve peanut or nut snacks and, to reduce the risk of residue, its crews will make an announcement asking fellow passengers to refrain from eating nut or peanut snacks.)

But on the stomach-flipping downward bounce, the negative stories and tales of inconsistent promises about allergy accommodations abound. In Allergic Living’s view, they are becoming more frequent.

One of the big problems is that some airlines’ own staff members seem unaware of their employer’s exact policy on food allergies.

In a 2008 study from the University of California at Davis, researchers phoned several airlines three times and asked the same questions, including: “Would you be willing to remove peanuts or tree nuts from a flight?” Airlines responded consistently only 31 per cent of the time. Anecdotally, this situation persists with many carriers.

Next: Anaphylaxis in the Air

We asked some of the biggest names in the nation’s allergy community about their top picks for lesser-known allergy-friendly restaurants. Here’s what they came up with:

Davio’s Northern Italian Steakhouse
Boston, Philadelphia and Atlanta
www.davios.com
“This higher end restaurant is worth a splurge. Their gluten-free menus are extensive, and their overall food allergy awareness is excellent.”
–Paul Antico, www.allergyeats.com

Blue Smoke
116 E. 27th St., New York City
www.bluesmoke.com
“Enjoy jazz and mouthwatering barbecue under one roof. They have nut- and gluten-free menus, which include fantastic salt and pepper ribs.”
–Sloane Miller, www.allergicgirl.com

Lebanese Taverna
10 locations in the Washington, D.C. area
www.lebanesetaverna.com
“Since completing NFCA’s GREAT Kitchens training, their menu has become rich with gluten-free offerings and they have gained popularity with the D.C. food allergy community.”
–Alice Bast, www.celiaccentral.org

Weber Grill Restaurant
3 Chicago area locations, 1 in Indianapolis
www.webergrillrestaurant.com
“The restaurants have a fun atmosphere where Weber grills are used as the cooking medium. Their gluten-free menu is carefully thought through, with delicious burgers, ribs and brisket.”
–Michael De Cicco-Butz, www.glutenfreemike.com

Hugo’s Restaurant
3 locations in the Los Angeles area
www.hugosrestaurant.com
“Recognized for their expansive and diverse menu, Hugo’s uses organic ingredients, egg-free pasta, hormone-free meats and highlights menu items that are gluten-free, vegan, vegetarian or contain nuts.”
–Kim Koeller, www.glutenfreepassport.com

Greens Restaurant
15 Marina Blvd., Fort Mason Center, San Francisco, CA
www.greensrestaurant.com
“This is one of the West Coast’s premier vegetarian restaurants, and Chef Annie Somerville is completely food allergy savvy with unique substitution ideas.”
–Mireille Schwartz, www.allergysf.com

Secret Haunts: special recommendations hand-picked for you by prominent members of the allergy and celiac community.

Allergic Living strongly recommends you review our Step by Step Guide to Dining Out Safely before embarking on any restaurant visit.

It is always essential to conduct your own research when selecting a potential restaurant to visit. Call ahead to notify them of your allergies, and always speak to a chef or manager once you arrive. Confirm that any menu item ordered does not contain your allergen, and that proper measures are taken to avoid cross-contamination in the kitchen. If you aren’t satisfied or don’t feel safe, take your business elsewhere.

If so, Allergic Living wants to hear from you!

We are researching an article on whether there has been progress on allergy and gluten-free food issues – from meal plans to dining hall practices and residence accommodations – for university and college students.

If you have attended a university or college within the past two years, we’d like to hear about how you have (or have not been) accommodated, and any significant experiences: from the surprisingly positive to the unfortunately bad.

We’d also like to hear if your college is one you would recommend to others as “accommodating”.

Here are more details of what we’re looking for:

• Institution name
• Program studied / year at college
• Would you recommend the university re accommodations?
• Stories about the dining hall, cafeteria, other food situations and living on campus
• Specific positive or negative experiences
• Suggestions for improvement

We look forward to hearing from you. Drop us a line by clicking the link below:

1. Understanding the relationship between EGID and connective tissue disorders:

2. Improving the understanding of the genetic factors of EGID:

3. Identifying genetic and environmental factors that contribute to the diagnosis of an EGID:

4. Understanding genetic factors that may influence how EGID is passed down through families:

5. Testing the effectiveness and safety of the drug Losartan in treating EoE:

6. Establishing a registry for EGID to standardize care and help future research:

If you or someone you know would be willing to participate, contact the CCED at CCED@cchmc.org

Full press release from FARE:

“Raise Your Hand for Anaphylaxis Awareness,” sponsored by Mylan Specialty (the U.S. distributor of the EpiPen), is an offshoot of the company’s “Get Schooled in Anaphylaxis” initiative, with TV star and allergy mom Julie Bowen acting as a celebrity spokesperson. Earlier this year, AL interviewed Bowen, who has a son with life-threatening allergies to bee stings, nuts and peanuts, and spoke with her about what it was like to find herself in the role of allergy mom.

“It’s been a real eye-opener to realize how many parents, like me, didn’t know their child had life-threatening allergies until anaphylaxis occurred,” said Bowen in a recent press release.

In order to cast a vote for a district, anyone can vist Anaphylaxis101.com, register, sign in and select their district. Votes can be cast once per day, and there will be special days announced where a single vote is worth extra.

“Anaphylaxis can occur quickly, making fast action and response critical. The Raise Your Hand for Anaphylaxis Awareness competition is an easy way to help promote anaphylaxis education in school communities across the country so people are prepared to respond,” said Dr. Hemant Sharma, a contributor to Allergic Living, in a press release.

The competition will be open until October 1, 2013 for individuals aged 13 and older. To vote for your district, and for complete competition rules, visit anaphylaxis101.com.