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

On April 7, 2013, Adrian Gutierrez, an 8-year-old boy from Monmouth County, New Jersey, experienced a severe reaction and died in hospital. The reaction came over the boy on his family’s drive home from church, following a visit to a coffee shop. The boy’s mother suspects that Adrian, who was allergic to dairy and peanuts, may have accidentally sipped from his brother’s hot chocolate with milk. (Adrian had ordered a hot chocolate with  soy milk.)

One news report stated that an epinephrine auto-injector was administered to the boy. However, it is not clear whether the shot was given immediately after the reaction began, or  whether there was a significant delay. In the case of a severe allergic reaction, epinephrine should always be administered right away, as the drug can be less effective if a reaction has progressed.

On March 13, 2013, Maia Santarelli-Gallo, a 12-year-old girl from Burlington, Ontario (in Canada), appears to have experienced anaphylaxis during an outing to a shopping mall with her father and older sister. Local news reports suggest Maia had reacted to dairy and egg in the past, but her parents had been told she was intolerant rather than allergic, and she had never been prescribed an auto-injector. At this point, it is not definitively known what caused the reaction, but milk is suspected – since the last thing Maia ate was an ice cream cone.

Asked to comment on the girl’s fatal reaction, allergist Dr. Susan Waserman expressed profound concern to the local press. “It speaks to the need for proper diagnoses, proper education, how the family was told to handle this supposed food intolerance,” she said, adding that better support for the family would have led the girl to have an auto-injector. “The whole community feels terrible when we feel something like this,” she said.

On March 8, 2013, Cameron Groezinger-Fitzpatrick, a 19-year-old from Plymouth, Massachusetts, died from his peanut allergy while home from university for spring break. His family has said that a friend had offered him a cookie, which was supposed to be peanut-free but turned out to contain peanut butter.

According to ABC News, Cameron’s mother was told over the phone by a 911 operator not to administer an expired EpiPen which was in a nearby cupboard. Cameron’s current auto-injector couldn’t be found in time, as he had not finished unpacking for his visit.

“I didn’t know you can die from nut allergies. I feel foolish,” Robin Fitzpatrick, Cameron’s mother, told ABC News.

These tragic events reinforce the need for allergy education and having epinephrine always ready to access for those with food (and sting) allergies.

In more positive news, several states are beginning to see the importance of readily available epinephrine and are passing bills that allow doctors to prescribe “stock” auto-injectors to schools. These devices can used in emergencies for students who don’t have an auto-injector on school premises (in some cases, it may be a first allergic reaction).

Kentucky, Nevada, Oregon, Georgia and Tennessee have all seen recent progress in such bills in their state legislatures. In fact, Kentucky Governor Steve Beshear will be holding a formal ceremony to sign that state’ stock epinephrine bill into law on April 22, 2013.

The discussion around this article has become a wonderful opportunity to explore with our patients their concerns about the real risks of food allergy, their hopes for a cure, and their understanding of where things stand in that search for a cure. Since you may have some of the same questions, allow me to review some key perspectives and hopefully find common ground on which we can all agree.

Those living with food allergy are all too aware of the risks of accidental food allergen ingestion. However, we strive to provide our patients a balanced approach, where we encourage vigilance at reducing those risks, but work to prevent that from evolving into debilitating anxiety. This requires a clear understanding of the real risks of food allergy.

One area fraught with ambiguity for patients is food allergen labeling laws. The Food Allergen Labeling and Consumer Protection Act (FALCPA) does not permit any of the eight major food allergens to go unlabeled as ingredients, regardless of the quantity present. However, what is very troublesome to families is that FALCPA is silent on the issue of cross-contact.

Cross-contact can and does sometimes occur in manufacturing.  There is no guidance given to manufacturers as to when a precautionary label (often referred to as a “may contain” warning) should be included.  Fortunately, efforts are under way by the Food and Drug Administration (FDA) to help reform how manufacturers use these precautionary statements.

Another important point of discussion raised by the Times article is the true risk of anaphylaxis due to skin exposure to food allergens. In the Spring 2013 issue of Allergic Living, Dr. Scott Sicherer addresses this question (pages 24-25), explaining that anaphylaxis from skin exposure is very unlikely because the skin barrier prevents the protein from entering the blood system. So, for most with food allergy, playing a game with a ball that had briefly contacted an allergen would not be expected to pose a significant risk of anaphylaxis.

Also of concern to patients was the reference in the Times article to a mortality rate from food anaphylaxis of 1 per 1,000 for “severely allergic” children. It is critical that patients understand that this figure was derived by comparing the estimated number of food allergy deaths in the U.S. to the number of annual emergency department visits for food anaphylaxis. Another approach favored by many puts the risk at more than 100 times lower, or five to 10 per one million.  This approach has the advantage of making the comparison to the total food allergy population in the U.S.

Undoubtedly, even one death from food allergy is a tragedy because it could have been prevented. For those with food allergy, it is important to understand that this risk can be significantly decreased by exercising vigilance in avoiding food allergens and always having access to epinephrine.

Another area of discussion after the Times article revolved around the emotional toll that food allergies can take on families, particularly when severe allergic reactions have been experienced in the past. Our goal is always to help families work through their fears and arrive at a place where affected children feel safe and in charge of their allergies.

Certainly, the psycho-social impact of food allergy is real and, as research is beginning to demonstrate, often detrimental. But there is help, and fear should not be accepted as the norm for those with food allergy. For times when anxiety becomes overwhelming, a counselor, psychologist, or psychiatrist can teach specific coping mechanisms.

While no one would choose to have a food allergy, some of our young patients have gained great empowerment from their experience – a sense that if I can manage my food allergies, I can do anything. So, as the name “Allergic Living” epitomizes, a balanced approach is important to ensure that having a food allergy does not prevent one from truly living.

Next: Community’s Role in the Quest for a Cure

University of North Carolina researchers compared data on the weight and body mass index of 245 food-allergic children between the ages of 1 and 11 years old against data on other children of the same age range. Data were also compared between the children with allergies and children with cystic fibrosis or celiac disease, two conditions which are also known to inhibit growth.

It was discovered that after 2 years of age, children with any food allergy had lower weight and BMI than those without allergies, regardless of whether they had celiac disease or cystic fibrosis. Researchers also discovered that having a milk allergy in particular meant even less weight gain, as did having multiple food allergies.

“The impact of food allergies was particularly pronounced when it involves cow’s milk or when it requires the elimination of more than two foods,” Dr. Brian Vickery, the study’s lead author, told a news conference. “Milk allergic children aged less than 2 were particularly vulnerable to growth restriction, with weight and BMI significantly lower than in those children with other types of food allergies,” he said.

Vickery said physicians need to do nutritional assessment with children in either of the two groups, and consider whether supplements are required. He also recommended nutrition counseling for those dealing with children with milk allergy or multiple food allergies.

“We feel that health providers should counsel patients and caregivers about the growth-related risks of the elimination diets that are used to treat food allergy, and ensure that families are excluding only the foods that are medically required,” he said.

See more news from the AAAAI 2013 conference here.

“Extreme Adventures” appeared at the top of the page, followed by a list of activities on the tour. I held my breath as I read the descriptions, to the effect of: “Travel through river canyons at 100 kilometers per hour in a jet boat!” “Bring your courage along as we bungee jump over Queenstown!” “Fall out of a plane from 14,000 feet over magnificent scenery.”

I stopped there. “Are you crazy?” I e-mailed back. “I hope these activities cost extra, and you can’t afford them.”

“Everything is included except for skydiving,” she replied, inserting a smiley emoticon.

Not only did I think she was nuts for considering jumping off a mountaintop attached to a rubber band or parachuting from a plane, but also for sharing this information with me. Having grown up watching me deal with her severe milk allergy, she knew I was wired to worry.

When dining out, I’d interrupt while she was ordering, urging the waiter to check the dish’s ingredients before she had a chance to ask herself. Once the meal arrived, I’d lean over her plate to inspect the food for any trace of butter or cheese.

But that anxiety was nothing compared to what I felt after Arielle, at age 16, had an anaphylactic reaction requiring three doses of epinephrine and hours of monitoring in the emergency room.

From that day on, whenever she was headed out to meet friends, I’d stop her at the door and ask where she’d be eating and if she had her medications with her.

She’d glare back at me. “You can’t keep me in a bubble for the rest of my life.”

***

She was right. Ultimately, I wanted what she wanted – for her to enjoy the same activities and freedoms as any teen. I worked on backing off, and reminded myself that she had always been careful: checking labels, alerting servers and managers to her allergy and passing up a food when she couldn’t be certain whether it contained dairy.

With planning and proper precautions, she spent two weeks without incident in Provence through a high school exchange program. (Full disclosure: my husband and I followed her to France. We stayed approximately 30 miles from her home base and never saw her, but felt reassured that we were only a car ride away in case of an emergency.)

Next page: The trip of a lifetime

Dr. Hemant Sharma: This is a great question, and one that many parents of children with cow’s milk allergy have as they search for a suitable substitute for cow’s milk. Unfortunately, because goat’s milk protein is similar in structure to cow’s milk protein, more than 90 percent of  the time, the immune system will mistake the two and cause a reaction to goat’s milk or goat’s cheese in someone with a cow’s milk allergy. So goat’s milk is not a safe alternative to cow’s milk, and for the same reason, neither are sheep’s milk nor buffalo’s milk.

You can discuss with your child’s allergist what might be an acceptable cow’s milk substitute. An option for an infant would be an extensively hydrolyzed, cow’s milk-based formula, in which the cow’s milk protein is extensively broken down, making it less recognizable by the immune system and less likely to cause a reaction. Since these formulas are also good sources of nutrients, many allergists will recommend children on restricted diets remain on them beyond the age of one year.

Once ready to wean from a formula, options at that point might include soy milk or rice milk, assuming your child does not also have allergies to those foods. To be sure that all nutritional requirements are being met, it definitely is a good idea to discuss your options with your child’s allergist or a dietitian.

Dr. Sharma is an allergist, clinical researcher and Assistant Professor of Pediatrics. He is Associate Chief of the Division of Allergy and Immunology at Children’s National Medical Center in Washington D.C. and Director of the Food Allergy Program. He is also the site director for the National Institutes of Health Allergy and Immunology fellowship program. He writes “The Food Allergy Experts” column in the American Edition of Allergic Living magazine. Questions submitted below will be considered for answer in the magazine.

Dr. Sicherer: The allergic form of eczema, also known as atopic dermatitis, is related to other allergic illnesses including asthma, allergic rhinitis (hay fever) and food allergies. These illnesses are inherited and often occur together in the same person.

Infants and children who are known to be allergic to milk are more likely to have atopic dermatitis and other allergies. Infants with atopic dermatitis are more likely to have positive allergy tests to milk as well as other food and environmental allergens such as dust mite and cat dander.

Milk allergy is not necessarily directly linked with the eczema, but both are more likely to occur in allergy-prone individuals.

The more severe the allergic skin rash and the earlier the onset, the greater the chance that the infant may have, or develop, other allergies, including food allergies. Again, this probably reflects a person’s general allergic inclination, rather than being a direct link between a food and the skin rash.

But could there be a direct link between allergy and eczema? One theory is that the broken, rashy skin allows proteins to be “seen” by the immune system, while normal skin keeps out the allergens. This might make it easier for the immune system to attack the proteins that land on the broken skin, causing more allergies. However, this is just a theory.

Next: One direct link between eczema, milk allergy

While no food allergy “cure” looms around the corner, there was an encouraging sense that treatments and new tests are coming. Researchers are unlocking more secrets of allergies and the immune system – and finding better predictors of true allergies.

In one noteworthy media conference, leading researchers Dr. Wesley Burks (Duke University, North Carolina), Dr. Hugh Sampson (Mount Sinai School of Medicine, New York), and Dr. Robert Wood (Johns Hopkins University, Baltimore) spoke about results that they found “surprising” in a population study of allergies in young children.

This continuing study of 512 infants showed a very high level of peanut sensitization among 244 milk-allergic children.

“We estimated going in that about 20 per cent might already have peanut allergy that we didn’t know about yet,” said Dr. Wood. “But it turned out to be more like 65 per cent, so we were very surprised at the initiation of the study that such a high proportion of these babies already appeared to be either fully peanut allergic or on their way to peanut allergy.”

Dr. Sampson added that in this study, which is part of the five-site COFAR (Consortium of Food Allergy Research) project, he was particularly struck “by how high some of the levels [of IgE allergy antibodies] were in some of these infants.”

The sensitization shown in the skin tests doesn’t necessarily mean allergy – so researchers will give the children oral food allergy challenges when they are a little older to determine whether these findings are, in fact, true allergy.

Sampson notes that when they looked at test levels consistent with peanut allergy, the number of children affected dropped to 30 per cent.

“But that’s an extraordinarily high number for such young children who have not themselves ingested peanut.”

We will have more on these findings and the factors involved in the Summer 2011 issue of Allergic Living.

Next: Allergy Reactions to DPT Vaccine

There is no need to forego favorite family recipes, even if following a free-from diet. With the right ingredient substitutions, those beloved holiday desserts will make the transition flawlessly. The most important thing to consider when making substitutions is the purpose of the original ingredient.

Take buttermilk for example. It adds a slight tang and subtle richness to recipes; the acid in buttermilk tenderizes the gluten in batter to produce baked goods with a softer texture; and the acid reacts with baking soda to help quick breads and cakes rise. Fortunately, all of these needs can be met with a quick, homemade substitute.

Dairy-Free Buttermilk Alternative

Yields 1 cup

Ingredients

• 1 tbsp white vinegar, or apple cider vinegar, or lemon juice
• plain or unsweetened soy milk, or rice milk, or hemp milk alternative

Method

• Place the vinegar or lemon juice in a glass measuring cup and add enough milk alternative to reach 1 cup. Stir, and allow to stand and thicken for about 5 minutes.

Note: Milk alternative does not curdle the way dairy milk does.

Sour cream has similar properties to buttermilk, but its thickness also adds structure to recipes. You can substitute a store-bought sour cream alternative, but making your own is easy and economical.

Silken ‘Sour Cream’

Yields 1-1⅓ cups

Ingredients

• 1 12.3 oz (349 g) package firm silken tofu
• 1 tbsp grapeseed or canola oil
• 1 tbsp lemon juice
• 2 tsp apple cider vinegar
• 1 tsp agave nectar or sugar
• ½ tsp salt

Method

1. Place all ingredients in a food processor or blender, and process until the mixture is creamy.
2. Refrigerate until ready to use.

Next: Replacing Egg White

Dr. Waserman: Having allergic parents does place your son at higher risk of becoming allergic. However the particular allergies he may develop are not predictable.

Even though you are breastfeeding, unless you have been on milk avoidance yourself, he has probably already been exposed. I would introduce milk at the recommended time.

A cautious way to do so would be to place a drop on your son’s face, wait 10 minutes to see if he develops any redness or swelling,  and then increase to two drops on his lip, also waiting and observing for any reaction.

You can then slowly increase his exposure over 1-2 days. If you are anxious, skin testing by an allergist to determine his allergic status can also be done. It will delay the process, but will let you know one way or another. Good luck!

We welcome your question to Allergic Living’s Ask the Allergist. Thank you for understanding that the specialists aren’t able to answer every question received.

Dr. Susan Waserman is an allergist and Professor of Medicine in the Division of Allergy and Clinical Immunology at McMaster University in Hamilton, Ont. She is also a past president of the Canadian Society of Allergy and Clinical Immunology.