Food Allergy Bloggers Conference - Agenda Announced

Have you been waiting on the Food Allergy Bloggers Conference agenda, before buying tickets and booking your travel?  Well, here it is!

In case you haven't heard/read the awesome news, there is a conference scheduled in early November - the Food Allergy Bloggers Conference in *drum roll*...Las Vegas, NV!  Despite the title, this event isn't just for "bloggers"...Here's an excerpt from their "About" page:

We want a conference to include EVERYONE: Advocacy leaders, non-profits, doctors, researchers, parents, and patients, and the companies who provide solutions that support them. Anyone connected to food allergies, asthma EoE, celiac disease, or food intolerances is welcome. We are united, fighting many of the same battles with our diseases. We know one another- through our virtual interactions, shared experiences, support, outrage, and tears. The power and excitement that happens when we all finally get to actually meet each other is palpable!

We invite you, blogger or caregiver, to attend! We are happy to invite any food allergy aware businesses and companies to attend and come participate in meeting and making connections as well to share their products and services! We can NOT WAIT to see you ALL!!!

I am ridiculously excited about this event!  I remember how excited I was when I attended the Auvi-Q Social Media Summit and I was primarily zoned in on getting my paws on the Auvi-Q and seeing it in the, um, plastic, but then I started seeing the arrivals of the others in attendance, since that was unknown to me before the event and one by one, these people whose work I had been following materialized in the flesh!  That summit gave birth to some cherished friendships, even though most of us only got to spend a few hours together.  It doesn't take long to bond, though, when you're around people who really GET what your life can be like, at times.  Even if it's not a mirror image, your lives have parallels and you have a shared vernacular.  We bemoaned the brief amount of time we had together and talked about how wonderful it would be to be able to get everyone in the food allergy community together.

That is something that Jenny Sprague, lead organizer of the conference, and blogger at Multiple Food Allergy Help, had been thinking of for quite some time, and now, she has worked very hard (and is still working feverishly) to make this event a reality.

I feel that this event is so very important and fills a great need in our community.  I know some might think this is just an excuse to go to Las Vegas (and if that's what draws you to it - great!), but I'm not attending for the location.  This will make my 10th trip to LV and it's my favorite vacation spot, but even if we were meeting in the convention center of Hotel XYZ in my own city, I'd be just as thrilled.  I'm attending because of those whom will be speaking and all those whom I hope will be in attendance.  I imagine us all coming together, becoming a more cohesive unit of advocates, figuring out our common community goals and learning from those we admire and some we have yet to meet. 

Since cost is always a consideration, I wanted to provide some information and suggestions on making this trip more affordable.  The 3 main expenses involved, aside from incidentals, are conference tickets, airfare, and hotel accommodations.  For the conference tickets, you can take one easy step and buy your ticket(s) before June 30th, at the Early Bird pricing level.  As for airfare, I've done some searching on Kayak.com, but they don't have Southwest Airlines' rates available for comparison, so I did it manually, and if you live in a city that SWA serves, that would be your best bet.  I have Rapid Rewards points with them, and the rates are really good, this far ahead!

I'm a big advocate for responsible credit use, so I will make this one suggestion to those who are careful with credit.  The Southwest Airlines Rapid Rewards Visa card offer 25,000 bonus points, which is equivalent to $400 in air travel, and it is awarded when $1,000 is spent on the card in the first 3 months. (There are 5 months until the conference!)  The card has a $69 or $99 annual fee, depending on which one you qualify for, but that is still quite a savings off your airfare.  I think everyone should have a credit card with some sort of rewards, if you're going to use credit, at all.  If your card isn't currently rewarding you, maybe it's time to switch.  We switched from a different rewards card to this card, and just put monthly expenses like gas, groceries and other things on it and pay it off at the end of the month.  We were going to buy those things anyway, so might as well earn rewards while we're at it!

The hotel rate for the conference is really great for Las Vegas, or anywhere, really!  I know here in town, we can't get rates that good!  To cut down on costs there, they do allow up to 4 people in a room, with a small additional charge per person and you can also add on the rental of roll-away beds.  Splitting the rooms 4 ways, if you're attending solo, brings the room cost down considerably.  Even if you split it with just one other person, it's a pretty awesome deal to stay 3 nights in Las Vegas for a little over $100 per person, for the entire stay! 

Now, once you've brought the expenses down as much as you can, there's always the option of finding sponsorship - and this doesn't just apply to bloggers!  If you're a non-blogging, food allergy mom, when is the last time you've had a vacation?  HAVE you ever had a vacation?  I count myself so, so, so amazingly fortunate that I do have time to myself and have had vacations apart from my sweet girl.  I love her more than I can say, but everyone needs a break, at times.  This is not, exactly, a vacation, but it is time away.  (Well, if you're bringing a spouse, partner, friend, etc., then maybe it will be a vacation, too!)  How about having a fundraiser for yourself, for once?  Ask family and friends to help sponsor your attendance.  I know plenty of friends who've asked for contributions for trips to retreats, sporting events, etc.  This is one huge therapy/learning/brainstorming session and you shouldn't feel shy about asking those who care about you to support you if you wish to attend.  Yes, we need more money for research for a cure, but it's not a zero-sum game.  Developing our advocacy skills and sharpening our focus can actually increase the amount of funding we can bring to the cause, thus multiplying the amount of money put toward finding a cure.  We also need input from everyone who has something to contribute, to help us further our collective goals and continue our advocacy efforts.  We need to hug each other, in person! :)  (I'm a hugger, what can I say?)

OK, so if you're still with me, I hope you will give this conference some serious thought.  I will be there and I would absolutely love to see you, too! 

Flax Seed Allergy

My daughter has multiple food allergies, including 5 of the "Top 8", but I often feel that her allergies beyond the "Top 8" are the hardest to manage, because we don't have the benefit of coverage under the FALCPA labeling laws.  Having a child with a flax seed allergy (and other non-Top 8 allergies) means calling EVERY company, for EVERY new product we wish to try.  I called a very large manufacturer, once, to ask about possible flax seed cross-contamination, and the representative didn't even know what a flax seed was and asked me, "is that like a sunflower seed?" So, the calls are not always as informative as I'd like, but most allergy-aware companies are able to provide me with the information I need.  My favorite response is, "we don't use flax in our facility." Unfortunately, I don't hear that very often, as flax is a favorite additive for Omega-3s, egg substitution, etc.

Before my daughter was born, I ate copious amounts of flax seed cookies.  I thought I was making a healthy choice, because of the Omega-3s, etc.  (Now, I believe hemp seed has the preferred ratio of Omega-3:Omega-6, but if I had eaten gobs of hemp seed cookies, she'd probably be allergic to hemp seed, now.)

Comparison Chart - Hemp Seed (aka Hemp Hearts) vs Flax and Chia

When researching flax seed allergies, I came across a phenomenal post by Allergy Foodie, where she compiled a great deal of information from her readers about the subject.    

Since that time, I've encountered a new place flax seed has popped up, or down, rather...

Marmoleum flooring - I found this cool new flooring method and got all excited, as it was touted as a super eco-friendly flooring option.  When I went to read about it, I found a website that stated the following:

Marmoleum linoleum flooring is composed of only 5 ingredients: linseed oil, pine rosin, wood flour, pigments and jute fibers. Each of these naturally occurring elements contribute to the unique durability and hygienic nature of Marmoleum.

Linseed is extracted from flax seeds, which are in abundant supply, and contribute to the durable and anti-static properties of Marmoleum. 

Linseed oil is also used in the oil painting arena and those one whose allergic to flax seeds may not have a problem with linseed oil, I'd still rather not line my entire house with the stuff.

On the good news side of things, here are responses that I have been happy to receive from a few companies:  (Always call about your particular allergen profile, and things can change at any time, but this is the information I received, after my most recent inquiries.)

Flax-free manufacturers:

• Authentic Foods - They do not use flax seed in their facility, so all of their products should be flax-safe.
• Andean Dream - Not only are they flax-free, when I asked about milk, eggs, peanuts, tree nuts, wheat, flax seed, mustard, peas/pea flour, and sesame seed, they replied, "You can be assured that we do not use any of these ingredients in any of our products or anywhere in our factory. The only item we use that is considered a tree nut is coconut."

Flax-free products:

• Bisquick Gluten-Free Baking Mix - I finally received word from them that this product is not made on the same line with any products that contain flax.  It took them a while, as it's not something they readily track in their system, but I appreciate them taking the time to track it down.  
• Galaxy Nutritional Foods - Go Veggie! Dairy Free Cream Cheese - They have also confirmed for me that no flax products are processed on the same line as this product.
• Enjoy Life Foods - Crunchy Sugar Crisp Cookies - ELF has several products with flax in them and this eliminates many of their other products due to shared line issues.  I must admit, I let out a sad sigh over that, given that this company is super-allergy friendly, otherwise, but these crunchy cookies are not made on the same line as their flax products.  (I know they can't eliminate every allergen and there are probably people out there with millet or buckwheat allergies, who are equally tweaked.)
• Update:  I have since been informed that the Enjoy Life Cookies may have cross-contact with flax.  *sad face*
• Earth Balance Organic Whipped Buttery Spread - Several of the other Earth Balance spreads have flax in them, but the latest response from Earth Balance was, "There is no cross contamination with flax in Earth Balance Organic Whipped spread."  (FYI: The ingredients on their website do NOT match up with what is on the actual product.  There is no pea protein in the varieties that I get at my local Whole Foods.  I don't know why they haven't updated their website, or if the product varies by region...) --I tried this with my daughter and it made her a little itchy/rashy.  I cannot tell for certain if it was the olive oil, or possibly the annatto, which has been another suspect on my list.  

Dealing with a flax allergy can be very tricky, as they seem to want to add it to everything, these days, so we must be very careful and keep an eye out for it in all things, and not just food items. If you're dealing with a flax allergy and know if some flax-safe products that are also safe for those with multiple food allergies, I'd love to know about them!

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Here are some of my other posts related to flax seed:
Underreported Allergic Reactions in the ER 
Anaphylaxis Posing as Asthma 
When Flax Leaves Tracks

Study Shows Allergic Children Born to Loving Mothers

Un-Associated Press - May 2013

A study completed over a span of time, covering a number of regions, has shown a correlation between children who have food allergies and mothers who love their children.  An overwhelming preponderance of those studied were shown to be loved immensely by their mothers, though this love could not be measured fully, using conventional methods.  It is rare to find 100% incidence in a study, but this was the case when motherly love was analyzed.

New studies are performed all the time, but this study shows a coincidence of motherly love, in those children with food allergies, but this motherly love was not indicated as a causal factor.  The study also showed a correlation between allergic children and mothers who breathed air and ate food, at some point in their lives.

Dr. Iam Knott stated, "We are seeing a clear indication that this population of children with food allergies all seem to have very loving mothers - every one of them!  We're also noting that they each have names with vowels in them, especially when we extend the criteria to include the letter 'Y', as we sometimes do...We haven't done enough studies to prove a firm connection, though, as correlation does not always prove causality.  We're keeping a close eye on it, though, but don't yet advise the dropping of vowels from the 'Baby Names' books, at this juncture."  

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This, of course, is not a real article about a real study.  I wrote it partly out of frustration with the constant back-and-forth studies we read about the causes of food allergies in our children.  I do appreciate the hard work being done in the scientific community to arrive at an answer for us, but one must undertstand our frustrations and forgive us a little light-hearted ribbing.  I also wrote this out of love for my fellow food allergy mommies who might, at times, feel the pangs of guilt, which these studies can sometimes cause to surface.  These feelings serve us no useful purpose, yet pop up from time to time and I was hoping to replace those feelings with a little amusement. :)

P.S.  I used the standard term "mothers", but this universal love, of course, applies to fathers, grandparents, step-parents, and other caregivers, whether linked by genetics, or not.  The ties that bind extend beyond the confines of DNA.

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Many thanks to Oh Mah Deehness for including this post in the May 2013 Living with Food Allergies Blog Carnival!  Head over there and check out some great blog posts.

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Jerome Bettis and The Severe Allergy and Anaphylaxis Playbook

I had the honor of interviewing NFL football legend Jerome "The Bus" Bettis about severe allergies and anaphylaxis!  He has teamed up with the makers of the Auvi-Q to bring us "The Severe Allergy & Anaphylaxis Playbook".

Image: Auvi-Q.com

It's an excellent guide that covers not only food allergies, but bee sting, insect, latex and other allergies which can cause anaphylaxis.  I am really impressed with this guide!  Check out these sections:

• Jerome’s Top 5 Plays
• Food Allergy Plays
• Bee & Wasp Allergy Plays
• Latex Allergy Plays
• Exercise-Induced
• Allergy Plays Medication Allergy Plays
• Plays for the House
• Plays for School
• Plays for Travel

I think this is the kind of booklet that should be handed to patients by their doctors once they receive a diagnosis!  Plus, if they prescribe them an Auvi-Q, they won't have to worry about showing their patients how to use their epinphrine autoinjector, since the device speaks for itself. ;)

Given the rise of adult onset anaphylactic allergies, I think pretty much everyone should read this information and beware of the various causes of anaphylaxis and their possible symptoms.

I commend Jerome Bettis for using his celebrity status and visibility to promote this life-saving device and for bringing awareness to this ever-growing epidemic of anaphylactic allergies.

Below is the interview segment in which I was able to participate.  He's such a great advocate!

Food Allergy-Friendly Food and Fund Drive

I remember reading the article "Special Diet Food Banks" from Living Without Magazine, a while back, and reading about that young girl with Celiac disease having to eat the gluten-containing food from the food bank, even though it would cause her much suffering, later.  That story hurt my heart, and then I thought of those with life-threatening food allergies who wouldn't even have the option of eating certain foods, at all.

I live near San Antonio, TX, which is now the 7th largest city in the U.S., and I visited the website of the San Antonio Food Bank.  I had made many donations to them, in the past, but never did much research.  I read some disheartening statistics:

• Texas is the second most food insecure state in the nation. Defined, food insecurity is when you are so limited in resources to buy food that you are running out of food, reducing the quality of food that your family eats, feeding your children unbalanced diets, or skipping meals so your children can eat. 17.1 % of Texas’ population is food insecure.
• The rate of children living in poverty in Texas is 24.3%; the national rate is 20.0%. In Bexar County, that rate is 25.1% - that means that one in four children most likely struggle with food insecurity.
• Almost half of clients’ households seeking emergency food assistance are forced to make choices between food and other basic necessities. 48% report having to choose between paying for utilities or heating fuel and food; 47% had to choose between paying for rent or a mortgage and food; 39% report having to choose between paying for gas for a car or food.
• Each week, approximately 58,000 people receive emergency food assistance from an agency in the San Antonio Food Bank network.

Now, factor in the statistics on the rise of food allergies, and other medically-driven dietary restrictions and you have a population of people who are in a precarious situation and need our help.  Have a look at the "Top 12 Most Wanted Food Items":

If you are allergic to one or more of the Top 8 food allergens (milk, eggs, peanuts, tree nuts, soy, wheat, fish and shellfish), then most of these foods are off-limits, or have to be scrutinized closely, due to possible cross-contamination issues.

When weather disasters hit, there are a limited number of shelf-stable items that provide protein.  When Sandy devastated the Northeast, for example, we collected money and sent peanut butter substitutes (Wowbutter, Sunbutter, etc.) and other allergy-friendly foods to the area food banks.

So, with Food Allergy Awareness Week going on this week, I'd like to do a Food Allergy-Friendly Food and Fund Drive.  I called the San Antonio Food Bank to set one up.  It's part physical food drive and virtual food drive.  I love their Virtual Food Drive application.  It allows you to "walk" through a virtual store and add things to your "basket".  It allows you to purchase cases of items at incredible discount rates.  I have set up the food drive under our local support group, the San Antonio Food Allergy Support Team.

Would you like to help boost the San Antonio Food Bank's stock of safe foods for those in need?  Here are some ways you help!

• Visit our Virtual Food Drive
  
• Select food items that don't contain the Top 8 allergens.  They don't have to be free of ALL Top 8 allergens, but consider skipping the mega-quantities of peanut butter. ;)  They have items as economical as $1.50 for purchase.
• You can also add money to your "basket", which will procure more food items, if you just can't decide what you'd like to buy.
• For those with Amazon Prime: Perhaps consider ordering allergy-friendly food items, like Wowbutter and Sunbutter, and have them shipped to me.  (Send me a message for my address.)  I am waiting to hear back from the Food Bank, as to whether they can accept individual shipments, from others.  If so, I will report back with that information.  Even if you don't have Prime, orders over $25 qualify for free shipping.  If you see my Recommendations widget, there are links to Sunbutter and Wowbutter via Amazon.com.
• If you don't know what to get, or see anything you'd like to buy on the Virtual Food Drive and would like me to do the footwork for you, I'd be more than happy to do it!  I have contacted some companies to get coupons for products and will be purchasing them for the drive with my own funds, so if you'd like to pool funds with me, that would be greatly appreciated, as well!  I can send you a picture of me at the Food Bank, if you'd like to see where your money went. :) 
• Share this post!  I will gratefully accept donations of any amount, but if you cannot spare any at this time, I completely understand, but perhaps you might find it in your heart to share this post, which is also a great contribution, in itself.  I know it can be hard to ask others for contributions and it's hard for me, too, but I swallow those feelings and think of those for whom we're collecting and I also think of those who might be out there, trying to think of a way to give back, waiting for something to which they'd like to contribute.  

If you have any suggestions for safe, shelf-stable food items that I should purchase, I'm all "eyes". :)  Thank you very much for reading!  This drive is set to run through June 30th.

Edited to Add:  Here's my appearance from last year on Great Day SA, with some allergy-friendly food items, if you need some ideas.  (My segment starts at around the 3-minute mark, after Dr. Reyes speaks...) http://www.amazingandatopic.com/2012/08/great-day-sa-appearance-food-allergy.html

Food Allergy Moms - I Love You

Mother's Day is upon us, and I just wanted to take a moment to tell all of you food allergy moms how much I love you!  We're all on this journey, together, even if we live thousands of miles apart.  We don't always agree on every topic, but we can all agree that we are operating from the same desire to keep our children happy, safe and included.  I often feel so conflicted...I feel bad that there are so many of us in the same boat, yet grateful that there are others out there who understand what it's like to row these oars every day, trying to keep the boat afloat!  

Even though this post is about "food allergy moms", I have a heart full of love for all mothers, and parents in all kinds of situations, raising children with autism, sensory processing disorders, diabetes, ADHD, asthma, celiac disease, mitochondrial diseases, autoimmune disorders, neuromuscular conditions, etc.  Maybe you're still on the road to diagnosis, and don't even know what you're dealing with, yet.  Even if you have perfectly healthy children, you've crossed over into the land where, as Elizabeth Stone put it, your "heart[s] go walking around outside your body."

I can't deny, though, that there's a certain affinity that comes with talking to another mother who really understands what it's like to have a child with a life-threatening food allergy.  We don't have to explain our particular brand of crazy to them - they understand, with a knowing smile and nod.  We're part of the same beautiful, yet occasionally dysfunctional family. ;)     

  

With Food Allergy Awareness Week being kicked off by Mother's Day, I made this for you all, if you'd like to use it on your social media sites.  Why?  Well, because I love someone who loves someone with food allergies. :)  

Always in Awareness-Raising Mode

Even though my husband and I were on vacation, I realized that my compulsion to raise awareness about food allergies, and set misconceptions straight, never takes a vacation!

On our return flight home on Southwest Airlines, there was a peanut allergic passenger aboard (not sure whom) and I was pleased that the flight attendant announced that no peanuts would be served and she also asked if passengers would refrain from eating any nut-containing snacks that they might have brought on board.  I didn't overhear any major groans, though we were seated at the very front.  Her announcement prompted me to make an involuntary "hand clapping" gesture and I wondered if the people on the plane thought I was the allergic passenger. ;)  I was just so glad that they actually made the announcement.

They served Lorna Doone shortbread cookies and pretzels as the snack, and I overheard the couple across the aisle talking to the flight attendant (standing in the aisle between us) about someone they knew who had a peanut allergy, who carried around Benadryl chewable tablets with them, which they crushed and put under their tongue, as treatment for a reaction.  Then, the flight attendant said she had an allergy to sesame and something about eating tacos on a trip, once, and found out they used a sauce with tahini (ground sesame) in it and she had some minor itchy mouth and throat tingling.  She also got away with just using Benadryl.  I couldn't stand it, anymore, and butted in as politely as I could to tell them all that epinephrine was the treatment for severe allergic reactions, Benadryl wouldn't stop airway constriction, etc.  I explained that my 4-year-old daughter had multiple, severe food allergies and that I live and breathe this topic and that I blog about it, etc.  I explained that I, too, used to think Benadryl was enough, but I've had to learn so much, because of my daughter.

The couple was very nice and receptive to my spiel, and we had a really long conversation about food allergies, which I'm honestly hoping other passengers overheard, to set any other confused souls straight on the use of antihistamines.  When I told the flight attendant that she should carry epinephrine at all times, she said, "ugh, but they expire every year and I never use them!"  I said, "well, yes, but you still have to carry them, because you never know when you will need them."  I showed them the Auvi-Q simulator on my phone and they thought it was pretty cool.

The flight attendant was back and forth, doing her duties, and when she was back in the galley, I stepped in there (I was in the very first row) and talked to her a little more.  I told her that I didn't want to bother her, but that this was a very important topic to me, as we've had several food allergy deaths, this year, already and that too many people do not carry their epinephrine and the story is always the same - they had a lifetime of mild reactions, until the one that took their life.  She said the same thing happens with her asthma inhaler - it expires before she uses it, so she doesn't refill it.  (You can imagine how much I am having a conniption inside, by this point.)

I explained, as calmly as I could, that being asthmatic, like my daughter, puts one at risk for a more severe and potentially fatal allergic reaction.  I took a sheet of paper and wrote down information on getting the Auvi-Q or EpiPen, since she has insurance and it should not cost her much.  She said she had an appointment coming up and would follow up with her doctor about getting one.  I really hope she follows through on that, for her own safety.  She said she really needs to get an auto-injector for when she travels outside the country - YES, she does!!  However, she also needs it every single day.  Chefs get "creative" with their recipes all the time.  Sesame is easy to hide in foods and many servers might not know it's even in a dish.  Sesame is not labeled plainly on packaged goods, given that it's not covered under FALCPA.

Anyone, with any food allergy, who has been prescribed epinephrine, needs to carry it around with them, at all times.  We say it over and over and over, because it is the truth.  Also, if someone has the signs of a food allergy, they should see a board certified allergist for proper diagnosis and an epinephrine auto-injector prescription.

I don't know if I really changed anyone's mind, that day, but at least I planted some seeds, and tried to share some information and that's about all I can do.  It's ultimately up to each individual to do what they need to, in order to save their own lives.