The view from the honeymoon suite

When we set out to select a location for our first vacation in more than two years, we had some very specific parameters.

We live in Pennsylvania and our goal was to escape the cold wintery weather, so our destination had to be a place which had beach-friendly temperatures during spring break, and also had access to an ocean.

In the past we had visited Mexico or Aruba, but when my now 16-year-old daughter’s anaphylactic food allergies (milk, shellfish, egg, walnuts, potato, tomato, eggplant and pepper – including spices from peppers) made it too risky for her to eat food prepared by anyone but us, we stopped taking vacations altogether.

After two years of vacation hiatus, we were seriously craving some beach time. We wanted to find a destination within 20 minutes of a hospital – preferably a North American hospital – and in close proximity to a grocery store that would have a variety of foods my daughter could eat and prepare easily. And we had to be able to read the food ingredient labels – familiar brands would be easiest.

Because she or I cook every breakfast, lunch and dinner, every day of the year, we also didn’t want to spend a lot of time preparing meals. Part of our need for a vacation came from the magician-like skill we had to apply every day in making delicious food that both she and the rest of the family could enjoy. She is very experienced at bringing her own food to restaurants, so that’s what we planned to do on vacation.

We started by checking temperatures. No beach location in the U.S. offered the consistent mid-80′s of the Caribbean. Southeastern Florida seemed to be the warmest beach location we could find.

The next important consideration for us was that we wanted to be right on the beach – not across highway A1A from the beach. There are probably a lot of places where we could have rented a house or a condo, but we’re not experienced with the ins and outs of private rentals.

Also, there didn’t seem to be any resort that offered condos on a beach that would be warm enough during spring break. Amelia Island, near Jacksonville, Florida, has great condos that are in close proximity to groceries and are on the beach, but it’s not 80 degrees there in March.

There were other locations on the West coast of Florida that offered condos, but again they were not as warm or easy to get to, or weren’t reasonably priced during spring break. We eventually settled on Fort Lauderdale.

Next page: The ideal location found

Allergen

Where It Hides

Alternate Names

• baked goods, e.g. cookies, cakes
• challah and gluten-free bread
• crackers
• fat replacers (e.g. Simplesse)
• meat products with fillers like meatballs or meatloaf
• nougats, marzipan candy
• pasta (fresh but also some dried pasta “may contain” eggs)
• quiche, soufflé
• salad dressing, creamy dressings
• sauces, for example, Béarnaise, hollandaise, Newburg, tartar
• eggnog, whiskey sour
• fish mixtures (surimi) used inimitation crab and lobster meat
• foam and milk toppings on coffee
• anasthetic, for example Diprivan (propofol)
• some vaccines (e.g. flu vaccine; speak to allergist re safety)
• craft materials
• hair-care products
• medications

• albumin/albumen-conalbumin-globulin
• livetin
• lysozyme
• ovo (means egg), for example, ovalbumin, ovomucin, ovotransferrin
• silico-albuminate
• vitellin

Sources:
-ImmunoCAP
-Canadian Food Inspection Agency

“I kind of freaked out,” she admits, since her son had previously had an anaphylactic reaction to cottage cheese. Theo didn’t react to the crackers, but avoidance remained the family watchword.

The boy, however, turns out to be among the 75 per cent of kids allergic to dairy whom researchers now believe can actually tolerate milk – provided it has been extensively heated through baking. The same holds true for egg.

While under supervision at Johns Hopkins University School of Medicine in Baltimore, Theo on separate occasions was able to eat one-twelfth of an egg and a quarter cup of milk, both of which were baked into a cake. Emergency treatment was at the ready, but he didn’t react. By May, the boy had started a new diet at home that includes muffins, breads, even croissants; foods thoroughly baked at 350 degrees for at least 30 minutes. There has been a sanctioned bite of lasagna and, in the next phase, Theo will be testing out pizza, which isn’t cooked as long.

Allergists have long heard stories of allergic children who have accidentally eaten milk or egg – perhaps grandma fed the child an off-limits cupcake, or a daycare provider didn’t realize that cookies contained egg – without reactions.

But researchers are getting closer to understanding why kids like Theo can tolerate milk or egg that has been baked, while others still will react immediately. They’re also finding that introducing the baked food into the diet may actually help the child outgrow the allergy.

At Johns Hopkins, some dairy-allergic kids, including those who have had significant reactions to milk in the past, have even moved on to unheated foods such as yogurt and chocolate milk.

The best news: this is research that doesn’t have to wait for clinical trials and government approvals. As long as you begin at the office of your allergist, and he or she has the resources to perform food challenges safely, introducing baked milk or egg into your child’s diet is “something that can be done right now,” Dr. Wesley Burks, head of pediatric allergy and immunology at Duke University Medical Center, told the American Academy of Allergy, Asthma & Immunology conference in New Orleans earlier this year. He called this new way of treating milk and egg allergy a “paradigm change.”

Added Dr. Hugh Sampson, chief of allergy and immunology at New York’s Mount Sinai School of Medicine and leader of the research: “What it means is that as opposed to going to birthday parties and not being able to eat cake, or going to school and worrying about somebody eating a cookie that has milk or – they can suddenly do all this.”

***

THE CONCEPT of feeding allergic kids baked milk or egg goes against longstanding food allergy management practice and what parents like the Glaubers have been doing to protect their children. That is, they do everything in their power to ensure that not a morsel of the allergenic food crosses their child’s lips. A shift in thinking began a few years ago with a study performed by Sampson and his colleagues at Mount Sinai.

They gave each of 100 milk-allergic kids a muffin to eat that contained 1.3 grams of milk protein, in the form of dry milk powder. If a child was able to eat the muffin, baked for 30 minutes, without a reaction, two hours later he or she was served a waffle, which was only cooked for three minutes.

Sampson and his team found that 75 of the 100 children tolerated milk that had been extensively heated, and they were told to keep it in their diet.

While in the past it had been believed that kids were more likely to outgrow a milk allergy if they successfully avoided it, this study suggested otherwise. In follow-up appointments three months later, those children who had continued to eat baked milk products showed a significantly smaller

Reading labels is a way of life when you have milk or egg allergies. Before eating anything in a package, be sure to read the label carefully. Look for hidden sources of dairy or egg and other names for dairy, milk or egg.

Also be on the lookout for precautionary statements. These are statements that indicate an allergen may be in the food, due to cross contamination during processing. Examples of precautionary statements include: “May contain milk” and “Manufactured in a facility that also processes eggs.”

Allergists generally advise people with these allergies to avoid all products that include precautionary statements about dairy or egg.

If you are ever uncertain about whether a food product is safe for you, call the manufacturer to confirm. When in doubt, don’t eat it.

In Canada, new regulations have been proposed that would require food manufacturers list priority allergens in plain language on packaging, rather than using little known alternate names (i.e.: albumin instead of egg). The ingredients within listed ingredients that are priority allergens would also have to be shown. For example, manufacturers couldn’t simply list “flavouring” if the flavouring included a priority allergen, such as butter.

More on Canada’s Food Allergen Regulations.

In the United States, the Food Allergen Labeling and Consumer Protection Act went into effect in 2006. FALCPA requires manufacturers to use plain language when listing priority allergens, and to declare all allergens either in the ingredient list, or in a “Contains:” statement at the end of the list.

The allergens included in this regulation are milk, eggs, fish, shellfish, tree nuts, wheat peanuts and soybeans. These regulations do not include sesame and mustard, unlike the proposed Canadian regulations.

Separate legislation requires companies to declare sulphites if they are present at more than 10 parts per million, or if they had a technical or functional effect in the food.

Both Canada and the United States are studying ways to regulate the precautionary statements used on packaged food labels.

It used to be common for children to outgrow milk and egg allergies before elementary school, two large studies from the Johns Hopkins University show that these allergies are now more persistent and more severe. The studies, published in the November and December 2007 issues of the Journal of Allergy and Clinical Immunology, tracked 800 children with milk allergy and 900 with egg allergy over 13 years.

While previous research indicated most milk-allergic toddlers outgrew milk allergy by the time they were 3 years old, the Johns Hopkins team found that only one-fifth of children outgrew this allergy by age 4, and only 42 per cent outgrew it by age 8. The better news is that a majority was free of dairy allergy by age 16.

With the egg allergy, the trend was similar in the Johns Hopkins’ research. Only 4 per cent outgrew their allergy by 4 years old, and 68 per cent were free of the allergy by age 16.

“The bad news is that the prognosis for a child with a milk or egg allergy appears to be worse than it was 20 years ago,” Dr. Robert Wood, the studies’ lead investigator, told The JHU Gazette in 2008. “Not only do more kids have allergies, but fewer of them outgrow their allergies, and those who do, do so later than before,” said Wood, who is the head of the division of allergy and immunology at Johns Hopkins Children’s Center.

Overall Food Allergy Statistics

In general, food allergy is on the rise in North America and other developed countries. In Canada, an estimated 7.5 per cent of people have food allergies, representing more than 2.5 million people. In the United States it’s estimated that 12 million Americans (or just under 4 per cent of the population) have food allergies.

A major study in the United States recently found that cases of peanut allergy in children more than tripled in a decade, and that more than 3 million Americans now have a peanut or nut allergy.

Here are the rates of some of the major allergens in Canada and the U.S.

CANADA

Source: Surveying Canadians to Assess the Prevalence of Common Food Allergies and Attitudes towards Food Labelling and Risk (SCAAALAR) study. Published in the Journal of Allergy and Clinical Immunology, June 2010.

UNITED STATES

Peanut, Tree Nut or both:
Children -  2.1 %
Adults – 1.3 %

Source: US prevalence of self-reported peanut, tree nut, and sesame allergy: 11-year follow-up. Published in the Journal of Allergy and Clinical Immunology, June 2010.

For example, almost 6 per cent of the products from smaller companies that didn’t have an advisory label for milk did, in fact, contain milk. “The bottom line is that it might be wise to exercise more caution with smaller companies,” says Dr. Lara Ford, a fellow at Mount Sinai. (Precautions include checking directly with a food maker.)

What they found for those with peanut allergies was more encouraging: out of all the products tested that did not have a warning for peanuts, none contained the allergen. However, for milk and egg, the two other allergens looked at in this study, there were a few products without these ingredients on the labels that in fact contained the allergen.

Are “May Contain”
Statements Overused?

When it came to advisory labels, or “may contain” statements, there were products in each category of allergen that did in fact include that ingredient when tested. Although the numbers were small (for example, 12 out of 228 products with the may contain advisory), Ford stresses this does not mean warning labels should be ignored.

“The issue is that the most likely way for contamination to occur, especially for a solid food like peanut, would be for a chunk of it to end up in one packet of the food. It’s not evenly distributed through every packet of the food at a low level,” she explains.

Still, Ford says more research needs to be done to determine what level of contamination would be harmful, for various allergens. “Based on the amount of knowledge that we do have, a lot of food that we recorded to have contamination would likely not have triggered symptoms in most patients.”

Related Reading

Food Labeling: FAQ on New Regulations

This can present a challenge to parents who need to place a child in a daycare. While most licensed daycares are today well-versed in allergy issues (particularly peanut allergy), not all will be free of hard-to-avoid allergens such as milk and egg.

Before completing enrollment, make an appointment to review allergy practices of the daycare where you’re applying. Can snacks be dairy-free or largely dairy-free (e.g. there are many brands of dairy-free crackers used as snacks)? What are the hand-washing practices following snacks and meals? What is the protocol for wiping down toys which are shared and could get smeared with, say, cheese residue?

The province of Ontario, a leader with school anaphylaxis legislation, now also requires anaphylaxis strategies and risk reduction measures by law at daycares. This is part of the Day Nurseries Act. It is worth lobbying for similar practices in other jurisdictions. See Section 36.1 of this act.

Baked Goods Findings

Milk and egg are among the more challenging allergies to learn to manage – because both are used extensively in packaged food and bakery items. But good news: there is promising, very new research that shows many allergic children are able to tolerate foods containing either milk or egg: as long as they have been cooked thoroughly at a temperature of 350 degrees or higher. The amount of the allergen also is important.

Speak to your allergist about whether your child is a candidate for trying a baked goods challenge (never just try this without the specialist consultation). Research at Johns Hopkins University has shown that many children tolerating thoroughly baked milk or egg can even progress to foods that are less extensively baked, such as pizza. For more, see Milk, Egg Allergy Breakthrough.

Next Page: Managing Tips

“It” was her daughter’s first allergic reaction. Angela had fed Brigit egg yolk before but, this time, she “got hives around her mouth and then she turned absolutely beet red from head to toe.” Angela rushed Brigit to the hospital, where she was treated with Benadryl and monitored for 12 hours. The doctors recommended that the baby be tested for allergies as soon as possible. The tests would confirm the egg allergy (which Brigit has since outgrown), and would also reveal allergies to tree nuts and peanut.

“Brigit has a lot of other ones too,” says Angela, “environmental and animals. She’s very sensitive.” Angela and her husband Tad were about to discover a new way of life, built around their daughter’s allergies.

For families that include children with serious allergies, every day is a challenge. The learning curve is steep, and the stakes are high when one slip-up can mean life or death. Allergic Living spoke to three sets of parents who cope well with allergies to discover how they do it; what their secrets are to “managing” allergies. The families are from different parts of Canada, with kids of different ages, with varied lifestyles and opinions. But they share a common outlook: none are victimized or held back by allergies, and all of their children are leading full, safe lives.

Not that everyone started out with such control. After Brigit’s diagnosis in 1999, Angela felt lost. “You walk out of your doctor’s office and you’re shell-shocked. You do not know where to turn, you do not know where to start.” A neighbour introduced Angela, who now works as a sales and marketing executive with The Loyalty Group, and Tad, a lawyer who acts as in-house counsel for the University of Toronto, to Laurie Harada. Harada was leading the Anaphylaxis Education Group, a network of Toronto parents of allergic children. “That group was an invaluable resource for us,” says Tad. “Not only to gather information and practical experiences, but in creating a community that understood the issues.” The Browns are now the group’s co-leaders (while Harada today heads Anaphylaxis Canada).

For the Browns, the transition to living with allergies began with having to say goodbye to their cat, which they gave to friends. “We got rid of all of the allergens and we try to have a really clean house with hardwood floors, HEPA filters and no pets,” says Angela. They educated themselves about label ingredients, products, the dangers of cross-contamination and removed any allergen-containing foods from their cupboards.

When Garrett was born in 2001, the Browns were prepared. “We treated him as though he was allergic,” says Tad, “although we believed he wasn’t.” Tad and Angela were told to not to have their son tested until he was 3, to avoid unnecessary sensitization. With Garrett shielded from possible allergens, the Browns were lulled into a sense of comfort. When tests revealed that he, too, had severe peanut and tree nut allergies, his parents were taken aback.

Now 4, Garrett has never had an allergic reaction and is active in pre-school, swimming and sport ball. His sister, meanwhile, is in soccer, swim class, T-ball and karate, and has become a 6-year-old social butterfly, with a calendar full of play dates.

“I kind of freaked out,” she admits, since her son had previously had an anaphylactic reaction to cottage cheese. Theo didn’t react to the crackers, but avoidance remained the family watchword.

The boy, however, turns out to be among the 75 per cent of kids allergic to dairy whom researchers now believe can actually tolerate milk – provided it has been extensively heated through baking. The same holds true for egg.

While under supervision at Johns Hopkins University School of Medicine in Baltimore, Theo on separate occasions was able to eat one-twelfth of an egg and a quarter cup of milk, both of which were baked into a cake. Emergency treatment was at the ready, but he didn’t react. By May, the boy had started a new diet at home that includes muffins, breads, even croissants; foods thoroughly baked at 350 degrees for at least 30 minutes. There has been a sanctioned bite of lasagna and, in the next phase, Theo will be testing out pizza, which isn’t cooked as long.

Allergists have long heard stories of allergic children who have accidentally eaten milk or egg – perhaps grandma fed the child an off-limits cupcake, or a daycare provider didn’t realize that cookies contained egg – without reactions.

But researchers are getting closer to understanding why kids like Theo can tolerate milk or egg that has been baked, while others still will react immediately. They’re also finding that introducing the baked food into the diet may actually help the child outgrow the allergy.

At Johns Hopkins, some dairy-allergic kids, including those who have had significant reactions to milk in the past, have even moved on to unheated foods such as yogurt and chocolate milk.

The best news: this is research that doesn’t have to wait for clinical trials and government approvals. As long as you begin at the office of your allergist, and he or she has the resources to perform food challenges safely, introducing baked milk or egg into your child’s diet is “something that can be done right now,” Dr. Wesley Burks, head of pediatric allergy and immunology at Duke University Medical Center, told the American Academy of Allergy, Asthma & Immunology conference in New Orleans earlier this year. He called this new way of treating milk and egg allergy a “paradigm change.”

Added Dr. Hugh Sampson, chief of allergy and immunology at New York’s Mount Sinai School of Medicine and leader of the research: “What it means is that as opposed to going to birthday parties and not being able to eat cake, or going to school and worrying about somebody eating a cookie that has milk or – they can suddenly do all this.”

***

THE CONCEPT of feeding allergic kids baked milk or egg goes against longstanding food allergy management practice and what parents like the Glaubers have been doing to protect their children. That is, they do everything in their power to ensure that not a morsel of the allergenic food crosses their child’s lips. A shift in thinking began a few years ago with a study performed by Sampson and his colleagues at Mount Sinai.

They gave each of 100 milk-allergic kids a muffin to eat that contained 1.3 grams of milk protein, in the form of dry milk powder. If a child was able to eat the muffin, baked for 30 minutes, without a reaction, two hours later he or she was served a waffle, which was only cooked for three minutes.

Sampson and his team found that 75 of the 100 children tolerated milk that had been extensively heated, and they were told to keep it in their diet.

While in the past it had been believed that kids were more likely to outgrow a milk allergy if they successfully avoided it, this study suggested otherwise. In follow-up appointments three months later, those children who had continued to eat baked milk products showed a significantly smaller wheal (hive) on a skin-prick test compared to the beginning of the study. They also had increased levels of milk protein IgG4 levels, an antibody associated with a protective effect against allergies. (A similar study, with similar results, was performed with baked egg.)