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	<title>Allergic Living &#187; The Editor&#8217;s Desk</title>
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	<link>http://allergicliving.com</link>
	<description>The magazine for those living with food allergies, celiac disease, asthma and pollen allergies.</description>
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		<title>Food Allergy Awareness 2013: There&#8217;s Much Work to Do</title>
		<link>http://allergicliving.com/index.php/2013/05/13/food-allergy-awareness-2013-theres-much-work-to-do/</link>
		<comments>http://allergicliving.com/index.php/2013/05/13/food-allergy-awareness-2013-theres-much-work-to-do/#comments</comments>
		<pubDate>Mon, 13 May 2013 13:10:48 +0000</pubDate>
		<dc:creator>Gwen Smith</dc:creator>
				<category><![CDATA[The Editor's Desk]]></category>
		<category><![CDATA[Adrian Guiterrez]]></category>
		<category><![CDATA[allergy awareness]]></category>
		<category><![CDATA[allergy education]]></category>
		<category><![CDATA[allergy vigilance]]></category>
		<category><![CDATA[food allergy awareness week]]></category>
		<category><![CDATA[food allergy death]]></category>
		<category><![CDATA[Gwen Smith]]></category>
		<category><![CDATA[Maia Santarelli-Gallo]]></category>
		<category><![CDATA[Tanner Henstra]]></category>

		<guid isPermaLink="false">http://allergicliving.com/?p=17444</guid>
		<description><![CDATA[Food Allergy Awareness Week is a great time to take stock. We have come so far in the last decade on food allergy awareness. It&#8217;s now common for schools to make food allergy accommodations to protect at-risk kids, while colleges in the United States are also moving in that direction (following a key ADA decision), [...]]]></description>
				<content:encoded><![CDATA[<p>Food Allergy Awareness Week is a great time to take stock. We have come so far in the last decade on food allergy awareness.</p>
<p>It&#8217;s now common for schools to make food allergy accommodations to protect at-risk kids, while colleges in the United States are also moving in that direction (following a key <a href="http://allergicliving.com/index.php/2013/04/10/lesley-u-decision-a-victory-for-allergy-celiac-access/">ADA decision</a>), and summer camps are starting to go allergy- and even gluten-friendly.</p>
<p>As one who gets feedback daily from <em>Allergic Living</em> readers, I hear more and more stories of inclusiveness and educators who &#8220;get it&#8221; when it comes to food allergies. This definitely is big progress compared to years gone by.</p>
<p>However, I must confess to feeling more concerned and reflective than usual this 2013 Awareness Week (May 12-18). If you&#8217;re reading this, you likely know why. We&#8217;ve lost four young people this spring to the swift and over-powering allergic reaction that is anaphylaxis.</p>
<p>Most recently, 11-year-old Tanner Henstra succumbed to a severe reaction on April 19 following a food accident in which he bit into a pretzel at a friend&#8217;s house that turned out to be filled with peanut butter. Eight-year-old Adrian Gutierrez, died two weeks earlier, having mistakenly sipped from his brother&#8217;s hot chocolate at a Starbuck&#8217;s shop. The boy with the wide grin and luminous brown eyes had been allergic to both dairy and peanuts.</p>
<p>Spring Break in March saw two tragedies: 12-year-old Maia Santarelli-Gallo passed away following symptoms suspected to be anaphylaxis – the incident occurred after she&#8217;d eaten an ice cream cone. The girl&#8217;s family had only ever been told she was dairy and egg intolerant. There was no epinephrine auto-injector; they had no idea she needed one.</p>
<p>Cameron Groezinger-Fitzpatrick&#8217;s mother said he had just arrived home from university for Spring Break in early March when he ate a cookie a friend offered. It was supposed to be peanut-free but turned out to contain peanut butter. Again, he didn&#8217;t get epinephrine, and succumbed quickly to the reaction.</p>
<p>This Sunday was Mother&#8217;s Day, and that&#8217;s four mothers &#8211; from Utah, New Jersey, Massachusetts and Ontario, Canada – who spent a sad day, mourning children who passed away long before their time.</p>
<p>Anaphylaxis is a scourge, but to fight it, we need better education among the general public, educators, airlines, restaurants – and even among those who live with food allergy and its risks every day. There are lessons from these deaths that go beyond the basic shock of tragedy.</p>
<p>Consider that the two younger boys both got epinephrine, but they got it late. The other two did not receive the life-saving shot at all. If there&#8217;s one thing we can all strive to do this Awareness Week, it&#8217;s to get the message out that: in anaphylaxis, seconds count and epinephrine – not antihistamines, not an asthma puffer – is the first-line medication and the allergic person&#8217;s lifesaver. Use it.</p>
<p>Epinephrine is considered an extremely safe drug, but in anaphylaxis, it works best when given promptly. The guidelines issued by the National Institute of Allergy and Infectious Diseases are very clear on this point: &#8220;If you are experiencing anaphylaxis, or even suspect that you are, <strong>immediately take epinephrine</strong> and seek immediate medical attention by calling 9-1-1. Delaying epinephrine use places you at significantly increased risk for a life-threatening reaction.&#8221;</p>
<p>Tanner Henstra&#8217;s <a href="http://allergicliving.com/index.php/2013/04/26/utah-boy-dies-from-anaphylaxis/">mother Stacie</a> learned these facts the worst way possible. Even as a nurse by profession, she told the local Utah newspaper, &#8220;I was shocked at the severity of his reaction. It was just so fast.&#8221;</p>
<p>Adri Gutierrez&#8217;s family&#8217;s has set up a <a href="https://www.facebook.com/groups/rememberingadri/" target="_blank">Facebook page</a> to keep the young man&#8217;s spirit and memory alive. His aunt is direct in a recent post to the food allergy community: &#8220;He didn&#8217;t get a life-saving epinephrine shot until it was too late&#8230;. Complacency and unpreparedness killed Adri. Don&#8217;t let this happen to your loved one.&#8221;</p>
<p>Time and time again at this magazine, we hear of a parent or a teacher or a caregiver who wanted to &#8220;wait and see if a reaction gets worse&#8221; before administering the auto-injector. This Awareness Week, let&#8217;s spread the word: Waiting is a bad idea. If you&#8217;re seeing the symptoms of anaphylaxis, give the epinephrine, and give it now.</p>
<p>To help with the education process, <em>Allergic Living</em> has created a new poster – <a href="http://allergicliving.com/index.php/2013/05/13/six-that-save-lives-free-educational-poster-for-anaphylaxis/"><strong>Six That Save Lives</strong></a>. I encourage you to print it and share it with the school, the doctor&#8217;s office, anyone you think will benefit from it.</p>
<p>Let&#8217;s do our best to make the rest of 2013 a safe and inclusiveness time for all the kids and all the grown-ups who live with food allergies. If we keep up the education, watch that our young people don&#8217;t get complacent about food allergies, carry epinephrine and are calmly prepared to use it  – we <em>can</em> prevent the needless loss of precious lives.</p>
<p><strong>See also:</strong><br />
• FARE&#8217;s new <a href="http://www.foodallergy.org/its-not-a-joke">Food Allergy Bullying PSA</a> and campaign.<br />
• NIAID&#8217;s <a href="http://www.niaid.nih.gov/topics/foodAllergy/clinical/Pages/patients.aspx">food allergy guidelines</a>.<br />
• A popular new <a href="http://allergicliving.com/index.php/2013/04/25/emergency-allergy-training-course-launched/">anaphylaxis emergency course</a> launches.</p>
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		<title>Milk Oral Immunotherapy Not Lasting</title>
		<link>http://allergicliving.com/index.php/2013/03/13/milk-oral-immunotherapy-not-lasting/</link>
		<comments>http://allergicliving.com/index.php/2013/03/13/milk-oral-immunotherapy-not-lasting/#comments</comments>
		<pubDate>Wed, 13 Mar 2013 21:15:19 +0000</pubDate>
		<dc:creator>Gwen Smith</dc:creator>
				<category><![CDATA[The Editor's Desk]]></category>
		<category><![CDATA[aaaai 2013]]></category>
		<category><![CDATA[allergy desensitization]]></category>
		<category><![CDATA[food allergy]]></category>
		<category><![CDATA[food allergy tolerance]]></category>
		<category><![CDATA[immunotherapy]]></category>
		<category><![CDATA[milk]]></category>
		<category><![CDATA[oit]]></category>
		<category><![CDATA[oral immunotherapy]]></category>
		<category><![CDATA[tolerance dropping]]></category>

		<guid isPermaLink="false">http://allergicliving.com/?p=16113</guid>
		<description><![CDATA[The staying power of OIT (oral immunotherapy) for milk allergy has been called into question with the results of a 5-year followup of test subjects.]]></description>
				<content:encoded><![CDATA[<p>At the recent AAAAI allergists conference in San Antonio, there was a lot of talk – and some clear disappointment – after researchers investigating oral immunotherapy in milk-allergic patients reported that, for a majority, desensitization wasn&#8217;t holding up.</p>
<p>In fact, three to five years after completing an OIT study, Johns Hopkins University researchers said that many participants were more reactive to cow&#8217;s milk than they had been early in the course of treatment.</p>
<p>The team presented results from a follow-up study involving 32 children from two clinical trials in which they were fed tiny, then increasingly larger amounts of milk. These patients completed the milk oral immunotherapy, then underwent an oral challenge test for tolerance and were sent home with individualized instructions for daily milk consumption.</p>
<p>It turned out that 38 percent of the test subjects (12 children) who were thought to be desensitized were having frequent symptoms from milk three to five years after the trial had ended, while 22 percent had occasional symptoms. Only 25 percent of the participants were able to consume milk without symptoms. (The other 16 percent had ceased having milk.)</p>
<p>In terms of the type of reactions being experienced, 31 percent reported systemic symptoms (characterized as more than an itchy mouth or stomach ache) and 19 percent had symptoms serious enough to require an epinephrine auto-injector.</p>
<p>At a news conference at the AAAAI meeting, Dr. Robert Wood, director of pediatric allergy and immunology at Johns Hopkins, did not mince words: “Some of the more dramatic failures had looked like absolute successes in the study. They were tolerating huge amounts of milk; they were about as close to ‘cured’ as we could imagine,” he said.</p>
<p>The study shows that 22 percent of the children had returned to either milk avoidance or minimal consumption of it. “The main thing that I’ve come to believe is that they were not as protected as we believed in that they self-restricted [consumption] because they didn’t like the side effects the milk was putting them through,&#8221; said Wood.</p>
<p>So have the researchers lost hope? Not at all. It appears more a case of figuring out where the research goes from here for some patients who lose newfound allergy protection easily.</p>
<p>&#8220;Learning something that’s disappointing is why it’s called research,&#8221; Wood noted about the study. As he told <em>Allergic Living</em> in an interview: &#8220;To go from where we were 10 years ago, which was to say that ‘we probably can’t give food to a highly allergic patient safely at all,’ to say now that some patients are having extremely good outcomes, this leaves us with encouragement that the long-term potential is very real.&#8221;</p>
<p>Dr. Wesley Burks, one of the leaders on OIT research from the University of North Carolina, summed it up well when he said: “There are a lot of encouraging results, but there’s also a lot of work to be done. This isn’t really ready for treatment – we’re not there yet.”</p>
<p>There are some intriguing bigger questions on where research will head to get &#8220;there&#8221;. <em>Allergic Living</em> will be examining these issues in the Summer edition in a special report on food allergy treatment research. We hope you and your family will find it enlightening.</p>
<p><strong>Read more news from the AAAAI meeting <a href="http://allergicliving.com/index.php/2013/03/13/roundup-aaaai-2013-coverage/">here</a>.</strong></p>
<p><strong>See Also: </strong><a href="http://allergicliving.com/index.php/2013/03/13/parents-exposing-kids-to-their-allergens">Parents Exposing Kids to Their Allergens<strong><br />
</strong></a></p>
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		<title>Spring 13 Issue Is Going to Be Good!</title>
		<link>http://allergicliving.com/index.php/2013/02/09/spring-13-this-issue-is-going-to-be-good/</link>
		<comments>http://allergicliving.com/index.php/2013/02/09/spring-13-this-issue-is-going-to-be-good/#comments</comments>
		<pubDate>Sun, 10 Feb 2013 01:04:02 +0000</pubDate>
		<dc:creator>Gwen Smith</dc:creator>
				<category><![CDATA[The Editor's Desk]]></category>
		<category><![CDATA[allergic living]]></category>
		<category><![CDATA[allergy magazine]]></category>
		<category><![CDATA[celiac magazine]]></category>

		<guid isPermaLink="false">http://allergicliving.com/?p=15988</guid>
		<description><![CDATA[Feb. 11, 2013 – We’re deep into editing and layouts here at Allergic Living on the Spring 2013 edition of the magazine, so I thought I’d let our followers know what we’re working on. For our cover article, writer Carolyn Black has an incredibly insightful article on the impact on some marriages of the day-to-day [...]]]></description>
				<content:encoded><![CDATA[<p>Feb. 11, 2013 – We’re deep into editing and layouts here at <i>Allergic Living</i> on the <a title=" " href="http://allergicliving.com/get-allergic-living/?mod=home&amp;act=US" target="_blank">Spring 2013</a> edition of the magazine, so I thought I’d let our followers know what we’re working on.</p>
<p>For our cover article, writer Carolyn Black has an incredibly insightful article on the impact on some marriages of the day-to-day vigilance in managing food allergies and celiac disease. It includes stories of husbands and wives who are far apart in their approaches to managing children’s allergies – and does that cause stress! But this also turns out to be an issue with a later in life diagnosis of celiac or allergy (when a couple’s eating habits change overnight).</p>
<p>While studies have shown that quality of life suffers in families with food allergic kids, this is the first time I’ve seen couples speaking specifically – and so honestly and directly – about the impact on their marriages. Their stories are heartfelt and make you realize that when we speak of “allergy management,” what a journey that can be.</p>
<p>But what I love in this article is that Carolyn doesn’t just dwell on difficulties. She interviewed psychologists and parenting experts and shares the best of their advice for helping couples work as a team again. If food restrictions are in any way hurting your relationship, you’ve got to read this article.</p>
<p>I’m also so glad we’ll be publishing senior health writer Lisa Fitterman’s article on gluten’s effects on the brain. Lisa delves into the gamut of cognitive symptoms that those with celiac report: from headaches to insomnia and brain fog. But she goes even deeper – interviewing prominent U.K. neurologist Dr. Marios Hadjivassiliou to gain a greater understanding of his latest and groundbreaking research.</p>
<p>He is finding profound neurological effects in those with celiac disease who haven’t been diagnosed; it’s unlike anything we’ve known before. Dr. Hadjivassiliou wants to spread the word that “it’s imperative that we change the mindset about celiac disease and brain dysfunction.” <i>AL</i> mag hopes to help to that end with this article.</p>
<p>While there’s lots of thought-provoking reading, the <em>AL</em> team is also busy writing and photographing lots of great lifestyle features – to make the Spring issue an uplifting and inspiring read. There are many stories that I could mention, but as a hard drive full of editing awaits, I’ll just share a couple more.</p>
<p>• The lineup from our fabulous food team: New Food Editor Cybele Pascal offers an inspired selection of allergy-friendly, gluten-free Asian recipes. It was pure pleasure to “have to” test her Pad Thai <i>(yes, allergen-free Pad Thai!!)</i> at our food shoot. Delicious!</p>
<p>Senior Editor Alisa Fleming gets creative with brunch waffles and pancakes (no dairy, no gluten, no any top 8 allergens), and Associate Food Editor Elizabeth Gordon brings us outstanding chocolate cupcakes and cookies for spring.</p>
<p>• Just in time for spring allergies, we’ll tell you how to design a sneeze-free garden, and we’ve got amazing allergy-friendly gear for kids. There’s great advice from our expert columnists, including a terrific article from Gina Clowes on the broader implications of the <a href="http://allergicliving.com/index.php/2013/02/09/lesley-university-decision-a-food-allergy-victory/">Lesley University</a> agreement on the disability rights of food-allergic students.</p>
<p>FYI, if you’d like to get this issue but haven’t subscribed yet, that’s easy to do online <a href="http://allergicliving.com/get-allergic-living/?mod=home&amp;act=US">here</a>.</p>
<p>I’d better get back to that editing. But I’ll be looking most forward to our readers&#8217; feedback on the new issue, which will land in mailboxes about the first week of April. Feel free to send your comments to editor@allergicliving.com. We hope you&#8217;ll enjoy the issue.</p>
<p>warmly, Gwen</p>
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		<title>Lesley U. Decision: A Food Allergy Victory</title>
		<link>http://allergicliving.com/index.php/2013/02/09/lesley-university-decision-a-food-allergy-victory/</link>
		<comments>http://allergicliving.com/index.php/2013/02/09/lesley-university-decision-a-food-allergy-victory/#comments</comments>
		<pubDate>Sun, 10 Feb 2013 00:25:24 +0000</pubDate>
		<dc:creator>Gwen Smith</dc:creator>
				<category><![CDATA[The Editor's Desk]]></category>
		<category><![CDATA[allergies college]]></category>
		<category><![CDATA[allergies university]]></category>
		<category><![CDATA[celiac college]]></category>
		<category><![CDATA[celiac disease]]></category>
		<category><![CDATA[Lesley University agreement]]></category>

		<guid isPermaLink="false">http://allergicliving.com/?p=15980</guid>
		<description><![CDATA[A recent agreement reached between the U.S. Department of Justice and a private university in Massachusetts is one of the boldest positions taken on the rights of people (in this case students) to be able to eat safely. Here was the issue: Back in 2009 a few students at Lesley University in Cambridge complained that [...]]]></description>
				<content:encoded><![CDATA[<p>A recent agreement reached between the U.S. Department of Justice and a private university in Massachusetts is one of the boldest positions taken on the rights of people (in this case students) to be able to eat safely.</p>
<p>Here was the issue: Back in 2009 a few students at Lesley University in Cambridge complained that their civil rights were being violated under the Americans with Disabilities Act because the university made no accommodations in either the meal plan or other food services for celiac disease and food allergies. At least one student with celiac disease had to purchase the meal plan, though it didn’t have gluten-free options.</p>
<p>The Department of Justice thought the complaint had merit and investigated. The DOJ’s conclusion: “Food allergies may constitute a disability under the ADA.” The department specifically noted the damage that repeated consumption of gluten can do to those with celiac disease, “leading to vitamin deficiencies that deny vital nourishment to the brain, nervous system, bones, liver and other organs”.</p>
<p>The administrators at Lesley University, a private university known for its education and arts programs and a neighbor to ivy league Harvard University, could see the seriousness of the DOJ’s position. They decided to settle.</p>
<p>Under the agreement, announced with little fanfare at the end of December, Lesley U. said it would amend its food services policies to provide gluten- and allergen-free food options in its dining halls, work with affected students on individualized meal plans, allow pre-ordering of safe meals and set up a dedicated space for preparing and storing allergen-free foods. The food services staff are now undergoing training on allergy issues, and the university has agreed to pay the students who complained $50,000 in compensatory damages.</p>
<p>This is big-time accommodation and a big win for the food allergy and celiac communities. It serves notice that those on medically restricted diets have a right to eat where they learn without fear that their food will make them seriously, potentially dangerously ill. It acknowledges that students with allergies and celiac should be able to live in a dorm setting and rely on the food service personnel to have the knowledge and inclination to make them a meal that hasn’t been cross-contaminated.</p>
<p>But it’s not entirely clear yet how far-reaching the implications of the Lesley agreement will be. After the quiet release of this agreement, legal scholars, educators and others are now debating this.</p>
<p>To help understand the bigger picture of the Lesley U. agreement, <i>Allergic Living</i> columnist <a href="http://allergicliving.com/?post_type=post&amp;p=14339" target="_blank">Gina Clowes</a> is interviewing the senior counsel from the Department of Justice on this case and ADA legal specialists for the magazine’s <a href="http://allergicliving.com/get-allergic-living/?mod=home&amp;act=US" target="_blank">Spring edition</a>. I think readers will find it fascinating to learn more about this important precedent. I know I will.</p>
<p>&nbsp;</p>
<p>&nbsp;</p>
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		<title>Who&#8217;s to Blame for Another Allergy Tragedy?</title>
		<link>http://allergicliving.com/index.php/2012/01/18/a-girls-death-and-needle-phobia/</link>
		<comments>http://allergicliving.com/index.php/2012/01/18/a-girls-death-and-needle-phobia/#comments</comments>
		<pubDate>Wed, 18 Jan 2012 21:00:40 +0000</pubDate>
		<dc:creator>Gwen Smith</dc:creator>
				<category><![CDATA[The Editor's Desk]]></category>

		<guid isPermaLink="false">http://allergicliving.com/?p=12700</guid>
		<description><![CDATA[Virginia’s Chesterfield County police have determined that there was no criminal negligence on the part of the school personnel in the tragic food-allergy death of 7-year-old Amarria Johnson on January 2. Also cleared of criminal wrongdoing, thankfully, was the child on the school playground who, not knowing of the allergy, handed Amarria the fateful peanut [...]]]></description>
				<content:encoded><![CDATA[<p>Virginia’s Chesterfield County police have determined that there was no criminal negligence on the part of the school personnel in the tragic food-allergy death of 7-year-old Amarria Johnson on January 2.</p>
<p>Also cleared of criminal wrongdoing, thankfully, was the child on the school playground who, not knowing of the allergy, handed Amarria the fateful peanut – which Amarria then popped in her mouth and swallowed. I can only imagine the particular hell that child, and also the teacher and health-clinic aide who attempted to help Amarria in the short period before her death all must feel today.</p>
<p>Of course, I wish they had all acted differently that day. I especially wish that clinic aide had taken one of the auto-injectors available at the school, but prescribed to other children, and ripped off the safety cap, injected it into Amarria’s thigh as she descended into anaphylaxis – an injection that most likely would have saved her life. But it was against the school’s rules to do so, possibly against the law as epinephrine in Virginia, as in so many states, can be taken to school, but can only be administered to the person named on the prescription label.</p>
<p>In the online aftermath of this tragedy, some are admonishing Amarria’s mother Laura Pendleton, asking why she hadn’t provided an epinephrine auto-injector to the school. But I can’t find it in my heart to blame a mother mourning the loss of her little girl. In her shoes, what mother wouldn’t already be plagued by self-recrimination and “if only I hads”. Besides, we don’t even know whether it was the school’s fault or Pendleton’s oversight that Amarria didn’t have an auto-injector at school.</p>
<p>As <a href="http://www.cnn.com/2012/01/11/health/living-well/food-allergies-schools/index.html">CNN reported</a>, Pendleton has said she asked a school official about sending an auto-injector in with her daughter, but was told, no, please just keep it at home. The school has said only that there was no device provided for the child. It gets murky and he said/she said. The only point of raising this is: a big part of the preventing future tragedies has to be that epinephrine is available at all times to any child at risk of anaphylaxis at school.</p>
<p>Now here’s where I do find fault, with all of us as an allergy community and with the lack of communication about the importance of the auto-injector, most commonly known being the EpiPen brand. As a community of parents and advocates, we spend an awful lot of time talking about the fact that an allergen like peanut can kill, but we don’t give equal time to talking about epinephrine, the drug that can turn off the anaphylactic reaction like a faucet.</p>
<p>Nor do we remember that we need to continuously impress upon others the relative safety of that drug and, thirdly, the absolute need for speed when a food or sting allergy reaction is in progress. We grow so familiar with this knowledge that we at times forget to share it. Let’s consciously change that.</p>
<p><strong>Next:</strong> A lifesaver of a drug</p>
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		<title>Getting Life Back</title>
		<link>http://allergicliving.com/index.php/2011/06/29/getting-life-back/</link>
		<comments>http://allergicliving.com/index.php/2011/06/29/getting-life-back/#comments</comments>
		<pubDate>Wed, 29 Jun 2011 20:15:34 +0000</pubDate>
		<dc:creator>Gwen Smith</dc:creator>
				<category><![CDATA[The Editor's Desk]]></category>
		<category><![CDATA[peanut allergy]]></category>
		<category><![CDATA[quality of life]]></category>

		<guid isPermaLink="false">http://allergicliving.com/?p=10914</guid>
		<description><![CDATA[I have been there – to the place where you think your allergic life is unlivable. On a trip to Florida a couple of years ago, I got off the plane having a reaction to something. Who knows exactly what; I’d eaten only my own food, but hadn’t wiped down my seating area. Had a [...]]]></description>
				<content:encoded><![CDATA[<p>I have been there – to the place where you think your allergic life is unlivable. On a trip to Florida a couple of years ago, I got off the plane having a reaction to something. Who knows exactly what; I’d eaten only my own food, but hadn’t wiped down my seating area. Had a passenger before me been snacking on a peanut product? Or had I somehow contacted one of the various peanut products clearly in evidence (M&amp;Ms, pb sandwiches, trail mix) as I made my way to and from the restroom?</p>
<p>Peanut seemed the most likely culprit, but as the symptoms progressed on disembarking, I was more interested in fixing my raspy breathing than the cause. An EpiPen injection was followed by a trip to the emergency department of Sarasota Memorial Hospital (and more epinephrine). Four hours delayed, our vacation was finally off to a shaky start.</p>
<p>Fortunately, I’d booked a condo, so we could do our own cooking. I just wasn’t psychologically up to dining out. Not yet. I was having a moment with my allergies; I was feeling unsafe. Those of us who live with food allergies or celiac disease have these moments. In my case it lasted a few days, and then I was ready to be out taking precautions around food but being out all the same. For others, especially parents of children who have experienced anaphylaxis, moments can turn into months and years of trying to eliminate all conceivable risk. In other words, a stressful quest for the impossible.</p>
<p>In the <a href="http://allergicliving.com/index.php/2011/06/10/summer-2011-u-s-edition/">Summer 2011</a> issue of <em>Allergic Living</em> (&#8220;Get Your Life Back!&#8221;), writer Jennifer Van Evra shows that new research is finding an alarming decline in the quality of life of parents with allergic kids – and if you see yourself in that article, don’t despair. But I hope you will consider the advice that is offered. In this magazine, it comes from a place of caring and understanding that “finding balance” in the case of food allergies isn’t some routine work-home juggling exercise. We’re talking about your child, about anaphylaxis risk and about your own emotional well-being. It’s complicated ground, and you may have to push yourself a little at a time. But you can get there.</p>
<p>One of the key messages in the article is that once you take all the right precautions and teach them to your child, you need to get out and live life – for your own well-being <em>and</em> for your child. The only way you eliminate all risk is by coping through avoiding life and its adventures. And that’s not much of a life, nor much of an example.</p>
<p>If you need to talk about your situation – maybe you’re feeling overwhelmed by the idea of traveling this summer, then come and talk to the great parents in our community on the <a href="http://allergicliving.com/forum/">Allergicliving.com Forum</a> or on our <a href="http://www.facebook.com/pages/Allergic-Living/6974884797">Facebook</a> page. That’s another theme that arises: we need to talk about quality of life with those who understand. It really helps.</p>
<p>For me, this summer’s leap is going to be to stay at a cottage on an island quite a distance from a medical clinic. In past, that was outside my comfort zone. But I’ll make sure all the food that will be on the island is safe, I’ll have lots of epinephrine and I’ll be in the company of my husband and good friends who know my food risks and what to do in the unlikely event of an emergency. (And there is a good boat.) It’s not exactly skydiving, but it is my own little test of bravery. But more to the point: the lake is gorgeous, the friends are great, this is living. And I’m going to enjoy every minute of it.</p>
<p>&nbsp;</p>
<p>Gwen Smith<br />
Editor</p>
<p>I appreciate hearing from readers.<br />
Write to: <a href="mailto:editor@allergicliving.com">editor@allergicliving.com</a></p>
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		<title>The Lobby That Took the Cake</title>
		<link>http://allergicliving.com/index.php/2011/05/10/10686/</link>
		<comments>http://allergicliving.com/index.php/2011/05/10/10686/#comments</comments>
		<pubDate>Wed, 11 May 2011 01:25:36 +0000</pubDate>
		<dc:creator>Gwen Smith</dc:creator>
				<category><![CDATA[The Editor's Desk]]></category>
		<category><![CDATA[celiac disease]]></category>
		<category><![CDATA[celiac food labels]]></category>
		<category><![CDATA[gluten-free]]></category>
		<category><![CDATA[gluten-free diet]]></category>
		<category><![CDATA[gluten-free labels]]></category>

		<guid isPermaLink="false">http://allergicliving.com/?p=10686</guid>
		<description><![CDATA[Hats off to the organizers of 1 in 133, the Gluten-Free Food Labeling Summit. In a matter of weeks, John Forberger, the tweeting, gluten-free triathlete (@GlutenFreeTri) and Jules Shepard (aka Jules Gluten Free) managed to gather hundreds of supporters together in Washington for the impressive May 4 summit. The purpose? To send the message to [...]]]></description>
				<content:encoded><![CDATA[<p>Hats off to the organizers of 1 in 133, the Gluten-Free Food Labeling Summit.</p>
<p>In a matter of weeks, John Forberger, the tweeting, gluten-free triathlete (<a href="http://twitter.com/#!/glutenfreetri">@GlutenFreeTri</a>) and Jules Shepard (aka <a href="http://www.julesglutenfree.com/"><span style="text-decoration: underline;">Jules Gluten Free</span></a>) managed to gather hundreds of supporters together in Washington for the impressive May 4 summit.</p>
<p>The purpose? To send the message to the Food and Drug Administration that those living with celiac disease were sick and tired of waiting for a clear and reliable labels on gluten-free foods.</p>
<p>The fact is, people <em>are</em> getting sick and tired – and bloated, and brain-fogged, and extreme gastrointestinal symptoms and worse – from eating foods that claim to be “gluten-free” but really aren’t.</p>
<p>Sure some food makers have gone to great lengths to test and be responsible. (We love you guys.) But others? They’ve just jumped on the bandwagon, trying to cash in on gluten-free popularity without testing foods to meet standards. That’s because, of course, there are still no standards in the U.S.</p>
<p>It was not meant to be this way. Under the Food Allergen Labeling and Consumer Protection Act (FALCPA), the FDA was supposed get moving on defining a standard for what constitutes gluten-free. But four years after that process started? Still nothing, <em>nada</em>.</p>
<p>The message of those at the May 4 summit: Change has simply got to come. Afterall, this issue affects the daily lives of millions with celiac disease or gluten sensitivity.</p>
<p>But here’s the cool part about the two advocates and their summit. They got across their message in Washington – not with placards or shouting but – with cake.</p>
<p>A GF cake, to be specific. And not just a measly little round or rectangle. Jules Shepard is an accomplished baker and gluten-free entrepreneur (she even markets her own line of GF flour), so our creative lobbyists decided to build that behemoth you saw in our NewsReport.</p>
<p>All day on May 4, Jules, John and their helpers built and frosted, and Jules dangled off a ladder to frost and pipe some more. The result was a cake that weighed in at a ton and stood over 11 feet.</p>
<p>But the best part? Their imaginative public relations work, their petition with thousands of signatures and their social media efforts were noticed by those with the power to effect change. Michael Taylor, the FDA deputy commissioner of foods, made a surprise appearance at the summit and spoke encouraging words.</p>
<p>As Taylor told NBC in <a href="http://abcnews.go.com/Health/Diet/gluten-free-protest/story?id=13522557">an interview</a> earlier that day:  &#8220;I want people to understand that the FDA gets it.&#8221; &#8220;We&#8217;re on this. We&#8217;ll get this moving.&#8221;</p>
<p>He said that in a matter of weeks, the proposed standard would be out for public comment.</p>
<p>Let&#8217;s hope so. We&#8217;ll all be watching and eagerly anticipating. And if the FDA does not get its act together on GF labeling? Well it had better watch out for the next moves from Forberger and Shepard. Afterall, you don&#8217;t want to mess with a triathlete and a baker with the stamina to frost, on a ladder, for hours and hours. They just aren&#8217;t going to give up.</p>
<p><strong>Related Links:</strong></p>
<p>– Join the 1in133 GF Label Petition <a href="http://www.1in133.org/you/">here</a>.<br />
– Jules Shepard&#8217;s recipe, used for the giant cake, <a href="http://blog.julesglutenfree.com/?p=73">here</a>.</p>
<p>&nbsp;</p>
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		<title>No Regs for the Weary</title>
		<link>http://allergicliving.com/index.php/2011/02/10/no-regs-for-the-weary/</link>
		<comments>http://allergicliving.com/index.php/2011/02/10/no-regs-for-the-weary/#comments</comments>
		<pubDate>Thu, 10 Feb 2011 20:47:32 +0000</pubDate>
		<dc:creator>Gwen Smith</dc:creator>
				<category><![CDATA[The Editor's Desk]]></category>
		<category><![CDATA[beer allergies]]></category>
		<category><![CDATA[food allergies and labelling]]></category>
		<category><![CDATA[food labeling]]></category>
		<category><![CDATA[food labels allergies]]></category>
		<category><![CDATA[gluten in beer]]></category>

		<guid isPermaLink="false">http://allergicliving.com/?p=10135</guid>
		<description><![CDATA[[This article was posted Feb. 11, 2012. On Feb. 14, the Health Minister announced the regulations would be passed, with an exemption for beer makers.] Like the guest who finally turns up for dinner just as you&#8217;re clearing the dessert plates, Canada&#8217;s breweries last month showed up to bellyache about the proposed gluten and allergen [...]]]></description>
				<content:encoded><![CDATA[<p><em>[This article was posted Feb. 11, 2012. On Feb. 14, the Health Minister <a href="http://allergicliving.com/index.php/2011/02/14/canadas-food-labels-regs-set-to-pass/">announced </a>the regulations would be passed, with an exemption for beer makers.</em>]</p>
<p>Like the guest who finally turns up for dinner just as you&#8217;re clearing the dessert plates, Canada&#8217;s breweries last month showed up to bellyache about the proposed gluten and allergen labeling regulations.</p>
<p>What&#8217;s amazing is that Health Canada and the Prime Minister&#8217;s Office didn&#8217;t just send this nervy latecomer home with a foil swan.</p>
<p>In Canada, we&#8217;ve been pioneers in &#8220;considering&#8221; label rules that would clearly identify food allergen and gluten in sources on packaged foods. Consultations on the issue began in earnest in 1996, the same year that Atlanta hosted the Olympic Summer Games; the year a young Alanis Morissette swept the Grammys.</p>
<p>In the 15 <a href="http://allergicliving.com/index.php/2011/02/10/timeline-allergen-and-gluten-labeling-regulations/">intervening years</a>, all the consulting, revising, reviewing and re-revising by the food and beverage industry, distillers, bureaucrats, allergy groups, doctors and celiac associations was supposed to have finished.</p>
<p>In July 2008, Tony Clement, then our Health Minister, <a href="http://allergicliving.com/index.php/2008/07/02/food-allergy-labeling-ottawa-moves-forward/">promised</a> the regulations to millions of Canadians who live with food allergies and celiac disease. The label regulations were finally accepted by all stakeholders in February 2010; they were good to go. And they did complete one stage of the process.</p>
<p>There was just a second stage left to pass. But then the regulations sat, stalled at Treasury Board. The allergy and celiac communities began lobbying again in December with an open letter to the Prime Minister and an online <a href="http://www.allergicliving.com/petitions/food-labelling/">write-in campaign</a>.</p>
<p>Just as the current Health Minister, Leona Aglukkaq wrote back promising the regulations would pass in “early 2011,” the brewers came to Ottawa, guns blazing.</p>
<p>“It was very disheartening to receive a letter from the Health Minister reaffirming her commitment to this issue only to learn a few days later from the Prime Minister’s Office that an exemption was being considered for the beer industry,” said Laurie Harada, Anaphylaxis Canada’s executive director.</p>
<p>No kidding. We have the cooperation and sign-off of all the foodmakers, liquor makers, cake bakers, you name it – and now the brewers want another delay? The regulations were considered close to expiration date from neglect last winter. What will further delay do? If a spring election does occur, it will be back to the drawing board.</p>
<p>How do we lose this guest? Where is the foil? This party was meant to be a wrap.</p>
<p>In this community, we depend on clear labels for the basics of eating and drinking. We grow weary of being patient. We tire of avoiding food upon food in the grocery store because of mystery ingredients like “natural flavours,” “spices” or “hydrolyzed protein” (Is HP soy? wheat? corn? milk? Answer: any of the above). We just want to know what’s in our food and drink. And you know what? Even non-allergic Canadians are beginning to demand the same.</p>
<p>Our community remains resolved to seeing these regulations through despite the protracted battle to get the job done. What the beer companies and the prime ministerial advisers don’t seem to get is this simple fact: we need those labels; they are <em>not</em> optional.</p>
<h4>Next Steps:</h4>
<p>Let’s keep the pressure on the government to pass these regulations. We can win this yet. But we need to stay vocal now.</p>
<p>1. If you haven’t sent your letter via the write-in campaign, please do so now &#8211; <a href="http://www.allergicliving.com/petitions/food-labelling/"><strong>here</strong></a>. We’ve gathered over 8,700 letters in total from Round 1 and 2 of this campaign. And the tally is growing.</p>
<p>If you have sent a letter, thanks for the support! Can you think of anyone else who would take part? (It’s not just for those living with allergies or celiac, any supporter can send a letter.)</p>
<p>2. The groups in the campaign have now written a letter to all Members of Parliament, asking them to press the Prime Minister to pass the regulations. See it<a href="http://www.anaphylaxis.org/content/whatsnew/hot_topics.asp" target="_blank"> <strong>here</strong></a> and send it to your MP, too.</p>
<p>3. Call the Prime Minister’s Office, and let them know how much you and your family need these regulations: <strong>613-992-4211</strong>.</p>
<p>4. Anaphylaxis Canada has started an intriguing quiz “<strong><a href="http://www.whatsinyourbeer.ca/" target="_blank">What’s in Your Beer</a></strong>”. You may be surprised to learn of some potential ingredients. Again, show your friends, take the quiz, spread the word.</p>
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		<title>WestJet Steps Up to the Mike</title>
		<link>http://allergicliving.com/index.php/2010/12/08/two-airlines-two-allergy-approaches/</link>
		<comments>http://allergicliving.com/index.php/2010/12/08/two-airlines-two-allergy-approaches/#comments</comments>
		<pubDate>Thu, 09 Dec 2010 02:18:30 +0000</pubDate>
		<dc:creator>Gwen Smith</dc:creator>
				<category><![CDATA[The Editor's Desk]]></category>
		<category><![CDATA[Air Canada]]></category>
		<category><![CDATA[airlines and allergies]]></category>
		<category><![CDATA[WestJet]]></category>

		<guid isPermaLink="false">http://allergicliving.com/?p=9692</guid>
		<description><![CDATA[Hallelujah, we’ve been heard. If you ask a flight attendant on WestJet, Canada’s second largest airline, she or he will step to the microphone and ask fellow passengers to please not pull out nut or peanut snacks. The attendant will briefly explain that this is because there is a person onboard with serious allergies. This [...]]]></description>
				<content:encoded><![CDATA[<p>Hallelujah, we’ve been heard. If you ask a flight attendant on WestJet, Canada’s second largest airline, she or he will step to the microphone and ask fellow passengers to please not pull out nut or peanut snacks. The attendant will briefly explain that this is because there is a person onboard with serious allergies.</p>
<p>This won’t be a big deal to most of WestJet’s passengers, but that little announcement is a huge deal to those who travel with serious peanut or tree nut allergies.</p>
<p>A p.a. announcement asking other passengers to “please refrain from eating” certain allergenic foods and was one of two key recommendations in <em>Allergic Living</em>’s “Reduce the Risk” <a href="http://allergicliving.com/index.php/2010/06/30/allergies-airlines-campaign-update/">write-in campaign</a>, in which 1,100 Canadians wrote letters to the chief executives of both WestJet and Air Canada. The other was for clear, consistent policies, communicated to airline staff.</p>
<p>That lobby carried weight with WestJet, the airline’s longtime spokesman makes clear. The campaign “raised the profile of the issue; the letters made a big difference,” says Robert Palmer. “I still have them at my desk. They’re a constant reminder that this is an extremely important issue,” he says.</p>
<p>So pat yourselves on the back. You did it, allergy community, you got a major airline to listen and understand. And then they acted. Anaphylaxis Canada deserves credit for organizing confidential policy review discussions with WestJet earlier this year. (Talks included the main three allergy groups, allergists and <em>Allergic Living</em>.) That kept the issue of a formal allergy policy in front of executives of a busy airline.</p>
<p>As most of you know, Air Canada also just passed its formal policy. The timing is coincidence. Air Canada was told to finalize a formal policy by the Canadian Transportation Agency and the deadline was December 2. The CTA set out that Air Canada should set rules for an “exclusion” or <a href="http://www.allergicliving.com/?p=19">buffer zone</a> to protect those flying with nut of peanut allergies.</p>
<p>Air Canada complied and now you can request a small zone (where the attendants will ask other passengers not to eat peanuts or nuts) that consists in economy of the row you’re in, the row ahead and behind.</p>
<p>Outside the zone, other passengers can eat what they like and cashews and almonds, which Air Canada contends it can’t ask others to give up, will still be sold from the cart.</p>
<p>But requesting Air Canada&#8217;s buffer zone is a cumbersome process, which requires a form filled out by your doctor and faxed to the airline’s medical desk in addition to a call to Reservations to book, makes me wonder how many allergic frequent flyers will request this accommodation.</p>
<p>Still, this is a concession from an airline that flies 31 million passengers a year. It is a beginning. And at least in Canada, there are no peanuts being handed out by the airlines as is still dangerously the case on a few U.S. carriers.</p>
<p>Times have changed, and most airlines still aren’t aware that food allergies, which once were called rare, now affect two million Canadians and up to 12 million Americans – and that’s not counting those who fly with them.</p>
<p>WestJet is the kind of company that chose to hear the allergic community because as Palmer says “it’s the right thing to do.” With a few more executives with that attitude, with more awareness of the speed with which anaphylaxis can take hold, and with the strength of our community’s numbers, I truly hope the leadership shown by WestJet this week will be emulated by other airlines over the next couple of years.</p>
<p>It will take consistent reporting to the airlines – whatever airline – of any reactions allergic passengers experience onboard. (Better data is needed, so if you’re unfortunate enough to react – do tell the head office.)</p>
<p>And my friends, keep those letter-writing skills sharpened. It will take more campaigns, more negotiations, but greater allergy accommodations in the skies can happen.</p>
<p>For today, WestJet “gets” that safety trumps a handful of nuts for a couple of hours on a plane. And tomorrow? Others will, too.</p>
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		<title>Welcome to Our New Site!</title>
		<link>http://allergicliving.com/index.php/2010/09/15/welcome-to-our-new-site/</link>
		<comments>http://allergicliving.com/index.php/2010/09/15/welcome-to-our-new-site/#comments</comments>
		<pubDate>Thu, 16 Sep 2010 00:19:51 +0000</pubDate>
		<dc:creator>Gwen Smith</dc:creator>
				<category><![CDATA[The Editor's Desk]]></category>

		<guid isPermaLink="false">http://allergicliving.com/?p=7932</guid>
		<description><![CDATA[Ladies and gentlemen, welcome to our new and fabulous site. Please have a look around, and allow me to be your tour guide to point out a few features. First stop, the green navigation bar. If you pull down under Food Allergy, for instance, you’ll find full sections on the top food allergens, with comprehensive [...]]]></description>
				<content:encoded><![CDATA[<p>Ladies and gentlemen, welcome to our new and fabulous site. Please have a look around, and allow me to be your tour guide to point out a few features.</p>
<p><strong>First stop,</strong> the green navigation bar. If you pull down under Food Allergy, for instance, you’ll find full sections on the top food allergens, with comprehensive background articles, advice and news on each allergy.</p>
<p>Plus, you’ll see a section offering an Allergy Overview and the Allergy Basics.</p>
<p>Next stops: Maybe you’re dealing with celiac disease or asthma? No problem. Move across the green bar to those buttons to discover a great range of information, advice and articles by our team of health journalists.</p>
<p>Got a skin allergy or need school or travel advice? Again, we’ve got full sections under the respecitve green buttons. Healthy Home covers everything from VOC-free painting to dust mites and mold. We want to get your home “breathing” well.</p>
<p><strong>Questions, Questions</strong></p>
<p>In the NewsReport for September, we pointed out that experts in allergy, asthma and celiac disease will be taking <a href="http://allergicliving.com/index.php/category/blogs/">online questions.</a></p>
<p>We’re thrilled about that, since it can be a long time between scheduled visits to specialists. We all have some pressing questions to ask. And now, you can do so with the click of our orange “E-mail” button on the “Ask The Allergist, or Celiac Expert or Asthma Educator blogs.</p>
<p>A big thanks to the experts who are participating, and assisting our community online.</p>
<p>I won’t even try to mention all the features on the new site: there are too many, and you’ll enjoy discovering some.</p>
<p>But let me at least steer you to the new Allergy Safe Recipes and Gluten-Free Recipes – again, easy to find under “Recipes” on the green bar. Many of you know the gastronomic delights of Chef Simon Clarke from Allergic Living magazine, and now here are many of his fabulous “friendly” recipes online.</p>
<p>Try out the Advanced Recipe Search to narrow down the allergens you’re avoiding or if you’re looking specifically for gluten-free desserts.</p>
<p><strong>Share Your View</strong></p>
<p>One thing users told us on the old site was that they wanted more opportunities to add their own feedback. Well, now you can comment on almost all features on this site.</p>
<p>Our aim with this relaunch is to become a destination site for those living with allergies, celiac disease and asthma. We think (and hope) that in the one stop at <em>Allergic Living</em> you will be able to learn many new things about your or your child’s food allergy, celiac disease, asthma or environmental allergies.</p>
<p>Our journalists will also be reporting the latest news on allergy, celiac and asthma on the homepage. So do check in regularly for the latest.</p>
<p>A tremendous amount of work and dedication has gone into this site. Special thanks to Giselle Sabatini for her beautiful design; Travis Brown and the team at Flight Deck Media for their seemingly endless development work; and Wesley Corbett for his navigation expertise.</p>
<p>Key editorial contributors include: Claire Gagné, Jennifer Van Evra, Lisa Fitterman, Erin Stevenson, Lisa Ferlaino, Janice Paskey and, well, me too. We also gratefully acknowledge the support of the Ontario Media Development Corporation in this project.</p>
<p><strong>One parting point:</strong> this site is a work in progress. You may still see the odd bad link or other hiccup. Feel free to let us know in the comments below articles or at <a href="mailto:info@allergicliving.com">info@allergicliving.com</a>.</p>
<p>This site is built for and dedicated to <em>Allergic Living’s</em> great community of subscribers and supporters. (And we hope it’s of use to those who just stop by to learn about allergies.) Consider this is your site, and my hope is that it serves you well on your own journey living with allergies, celiac or asthma.</p>
<p>It&#8217;s all in the managing, my friends.</p>
<p>posted: October, 2010</p>
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