With an eye on the food allergy community as a unique group of consumers since 2008, we're on a quest to find and share ways to continue enjoying the good things in life.


09 June 2021

Improv Workshops for Teens with Food Allergies

Flyer - Sloane Miller

Do you have a teenager in high school who is managing food allergies? Listen up! Here is an opportunity that may be of interest!

Sloane Miller--a licensed social worker, author, consultant, and so much more, including being someone who grew up with multiple food allergies and continues to manage them still--is piloting a new improv workshop for teens with food allergies. The workshops are on Tuesday evenings and begin June 22. They will run for 6 weeks and each session is 90 minutes long, 6:30PM - 8:00PM EST. The number of teen participants is 8; parents are included! Sloane explains the "online workshop's aim is to help teens (9th through 12th grades) with food allergies and anaphylaxis increase their interpersonal skill sets and mental coping toolbox beyond medical avoidance of their allergen, which must be strictly maintained." The fee for the workshop is $50.

For more information, visit Sloane's website




30 May 2021

Don't Let the Name Deceive You

 

I did not realize how long it's been since I last wrote a blog post on here! 

The word of the day for me is "gratitude." 

It's a three-day weekend and the weather is gloomy. It rained all day yesterday and it is dark and overcast today. Temps are in the 50s. Not exactly inspiring for a weekend that historically is sunny and full of cookouts and other outdoor activities.

I have no big news to share, just sharing a small simple joy. 

This morning, we checked the ingredients for butternut doughnuts sold by Dunkin Donuts and found a very recent (May 2021) ingredient list. It's been a while since we checked. Apparently, Dunkin butternut donuts do not--contrary to my long-held assumption--contain nuts or nut oil, and the Dunkin Donuts location near us does not seem to ever sell peanut-containing foods. Lo and behold, it turns out my son can safely eat a butternut donut. Not a really big deal, but isn't it always nice to discover a new "safe" food? Even if it is just a doughnut... 🍩💓

What was your latest unexpected happy food allergy-friendly discovery?

29 November 2020

Food Allergy Fears vs the Children's Museum

Recently, it was announced that Stonewall Kitchen has opened a PB & J Cafe in the Boston Children's Museum building. The focus on serving peanut butter sandwiches at a cafe connected to a children’s museum is admittedly a bit odd. As the mother of a son with peanut and nut allergies, I remember how everything seemed potentially dangerous--a source of potential peanut or nut allergens--for years. When you have seen your child experience a life threatening reaction to a food, fear is a pretty normal response. That, and the desire to never allow it to happen again.

A few things can counter that fear. I believe the most important and most powerful weapon against fear is knowledge. For the great majority of people managing food allergies, avoiding ingestion is enough to prevent a serious or life threatening reaction. News articles about horrific reactions and tragedies attract much more attention than stories of millions of people with food allergies living blessedly uneventful, ordinary lives. It is those horror stories--which are the exception, thankfully--that can often dominate a caring adult’s thoughts when caring for a young child with food allergies. It’s very difficult to tame those fears by relying on science and statistically proven information. One cannot help but wonder, “What if my child is one of the unlucky ones?” “What if he is in that statistically small number that doesn’t fit the typical?” I know it's very difficult to shake that fear of that small possibility, no matter how small and how unlikely it is.


The truth is, a small number of people do have reactions to skin contact with their allergen. My son does. Thankfully, out of that small number of people, an even smaller number have anaphylactic reactions due to skin contact, and that’s because the allergen literally has to get beneath one’s skin or enter a mucous membrane, such as the nose or eyes (or mouth!). When in public, it’s wise to wash your hands frequently or if that’s not possible, carry wipes to wipe your hands clean. I remember how nerve-wracking it was to go anywhere with a small child who has food allergies. Keeping a child's hands away from his or her eyes, nose and mouth has a very different sort of urgency about it when it comes to food allergies, but the important thing to know is that it is do-able. It is manageable.


An even smaller number of people can experience reactions to airborne exposure. These are all possibilities, but the numbers show that the great majority of people can avoid life threatening reactions by avoiding ingestion. Of course, I would be remiss not to acknowledge that sometimes despite our vigilance and our very best efforts, reactions can happen. But out of that 32 million people with food allergies in the U.S., the great majority are able to travel and visit all sorts of places--amusement parks, zoos, museums, theaters, etc. It is not only unhelpful to imply this is not possible, it is inaccurate. The presence of one’s allergen does not mean a building or a museum or an amusement park or other venue is necessarily unsafe and off-limits, and needs altering to eliminate that allergen.


The fact that Disneyworld sells delicious peanut brittle on Main Street does not mean Disneyworld is not inclusive. Disney actually has Epi-pens on site, which is very appreciated by those managing anaphylactic allergies, and has other food allergy friendly options at their restaurants. The fact that the Boston Children’s Museum building now leases space to a Stonewall Kitchen cafe specializing in PB & J sandwiches does not mean it is not inclusive. This opening of this cafe, however, does provide an excellent opportunity for the Boston Children’s Museum to explicitly do something to support children with peanut allergy and other food allergies. I mention peanut allergy specifically since the PB & J sandwiches are obviously a concern for anyone managing peanut allergy. Rather than asking that the peanut butter sandwiches be eliminated, I would like to see Stonewall Kitchen offer some options on their menu for those with peanut allergy, milk allergy, and other food allergies and restrictions (gluten-free, etc.). Likewise, I would like the Boston Children’s Museum to partner or collaborate with the New England Chapter of the Asthma and Allergy Foundation of America, to provide some educational material about food allergies and how to manage them in public near the cafe and also the first floor lunchroom. It could be a small exhibit or display to support and educate those managing food allergies and their peers.


This cafe opening is yet another reminder that we need to empower children with food allergies as early as possible about how to manage their food allergies away from home. We need to support and educate their parents too. Families have been eating peanut butter sandwiches and all sorts of other foods in the first floor lunchroom for years. The risk of tiny peanut butter coated fingers touching exhibits in the museum has always been there. It’s there at Boston’s Museum of Science too. Yes, a cafe serving peanut butter sandwiches certainly highlights the concern about those little peanut butter covered fingers, but this risk has always been there. Thankfully, there are things we can do to protect our children, things that are proven to work. It's easy to let fear overtake you and to let yourself feel powerless, helpless. Don't forget, you have so much power--wash hands, use wipes, bring your own food/snacks, and always carry your epinephrine autoinjectors.


The photo I have included with this post is a photo of the package for my son's Auvi-Qs--which he never leaves the house without, just like his shoes!--and my copy of Sloane Miller's "allergic girl: adventures in living well with food allergies", published by John Wiley & Sons in 2011. I included Sloane's book because she really helped me see what life can be like for an adult with food allergies when my son was young, and the world seemed so overwhelmingly full of potential food allergy risks. How can we prevent our children with food allergies from growing up to be nervous, frightened adults? That's not what we want for them and it does not have to be that way. I urge you to read Sloane's book. So much of it applies to children too. Here is a small excerpt from pages 4 and 5:


"To avoid severe allergic reactions, millions of adults opt out of life's pleasures: kissing, dinner dates, social engagements, holidays and other celebrations, business lunches, and traveling to far-flung destinations--in other words, anywhere that food is involved, and that's pretty much everywhere. Even when they opt in, food allergic adults are often actively fearful, anxious, or nervous. They can also feel ashamed, embarrassed, marginalized, isolated, lonely and different because of their dietary restrictions. They often suffer in silence.


That was me until a fear years ago." 

23 October 2020

Food Allergies in School in the United States - Musings

EverythingSuperMario, CC BY-SA 4.0
 <https://creativecommons.org/licenses/by-sa/4.0>,
via Wikimedia Commons

One thing that has struck me during this pandemic is how different the 50 states really are in these United States. We are all witness to how different states have different ways of dealing with disease and public health. It's abundantly clear now too that different states have different ways of managing public education during public health crises. It's even different from one town to another town, in some cases.

Of course I believe the national food allergy organizations in the United States should seek to lead and advocate for food allergy safety and better food allergy management in schools, but it seems it is a bit misguided to put much emphasis and effort on a national level. Perhaps regional branches of national food allergy organizations or even state chapters--where they exist--should take a greater role in promoting food allergy safety in schools and improved management of food allergies in schools. 

It is not very helpful to receive guidance about food allergy management in schools from someone with little to no familiarity with schools in your own state. The same goes for many other things in school. For example, as a special education teacher, I find that although special education is protected by Federal Law and funded by the Federal government, there are differences in how special education services are provided and documented from state to state. Special education practices in Massachusetts, where I live and teach, are quite different than what you might find in Georgia or Indiana. Similarly, food allergy management in Massachusetts schools is a world apart from food allergy management in schools in other states.

In addition, it's been my experience that the best information about food allergy management in schools--in Massachusetts--usually is available from the school nurses. This may not be the case in other states. 

These are just a few of my recent musings about advocacy and leadership on the topic of food allergies in schools in these United States, which I typed into my laptop during the summer. Not much seems to make sense these days and no one seems to agree with anyone else either. Maybe we are all lost! And yet, the food allergy organizations are still pumping out the same old info. What's that old saying? "The more things change, the more they stay the same..."

02 February 2020

Exposure to Food Allergens in Public

Recently, there has been photo of a NYC subway car circulating along with a story of peanut butter possibly being smeared onto one of the poles passengers use to steady themselves during a subway ride. There is no confirmation of what the substance was, but kudos to Gothamist for posting a story which was sure to get clicks. Remember: clicks=money earned for many websites. Predictably, all kinds of folks with a connection to peanut allergy have shared the photo and the link to the story, leading to much speculation about the smear-er's motives. If you peek at one of the posts encouraging alarm, you will see comments such as "evil", "terrorism", and so on. The attention this photo and story have garnered are a great example of few things that really should be considered conventional wisdom in 2020: 
  1. subways are not clean, and the seats and poles have traces of all kinds of substances, be it food, germs, bodily fluids, etc
  2. when it comes to food allergies, many people have difficulty discerning real risk from perceived
  3. eye-catching stories related to peanut allergy make superb clickbait
  4. based on the number and types of comments this photo and story have generated, there are a lot of people with a lot of free time and apparently little experience riding public transportation
I think it is probably fair to say that for most people, using public transportation does not present a risk in terms of food allergies. My son has life threatening allergies to peanuts and tree nuts, and has experienced an anaphylactic reaction. He has even broken out in hives just from trick-or-treating and transferring packaged candy from a candy dish to his trick-or-treat bag. I mention this to explain that he is fairly sensitive to his allergens. We have ridden on AMTRAK, the MBTA commuter rail around Boston, the "T" (subway) in Boston, tour buses in multiple cities, the subway in New York City, Metro in Washington DC, and have not experienced difficulties in terms of food allergy safety. Anyone suggesting that food allergy safety is a likely problem on public transportation is not sharing accurate information. Rather than question the motives of the smear-er on the NYC subway, perhaps we should be questioning the motives of those who promote unnecessary fear in the food allergy community.

Remember, any time you are out in public, you are bound to touch a surface that has been touched by many other hands--shopping cart handles, door handles, railings, debit/credit card machines at stores, ATM machines, pens attached to chains at the post office and bank, library books, computers at school and the public library, etc. We all go to so many places in public and people aren't having anaphylaxis all over the place. If touching surfaces in public places were truly as risky as some people want you to believe, we all would be witnessing people having anaphylaxis everywhere all the time. That isn't happening! When an alarmist photo and story like this is passed around in food allergy groups and Facebook pages, take a step back and think about whether the author is drawing a reasoned conclusion or reacting out of fear or lack of information. Ask your allergist if you aren't sure about whether something is a real risk or not. There is nothing to be gained and there is no benefit in worrying unnecessarily. 

Remember that old saying--knowledge is power. Don't just take someone's word for it, don't accept strangers' anecdotal stories as fact. Ask your allergist and rely on authoritative resources such as foodallergy.org, kidswithfoodallergies.org, and https://twitter.com/AllergyKidsDoc.

31 October 2019

Food Allergy Research and Education Summit Discount Code



If Washington DC is a possible weekend trip for you, and you have a teen with food allergies, we have a discount code you may want to take advantage of, and FAST! This coming weekend is FARE's Contains Courage summit and its target audience is teens who have food allergies. The discount code will get you 50% off the regular price of admission and is 50discountJennifer.

I attended a FAAN conference many years ago, back before FAAN (Food Allergy & Anaphylaxis Network) and FAI (Food Allergy Initiative) joined to form FARE and I enjoyed it quite a bit. It was extremely informative, especially in terms of hearing about current research from some of the actual researcher themselves.

For more information about the summit, visit the FARE website. The Summit will take place November 1-3, 2019.

30 June 2019

Food Allergies and Labeling: Exercise Your Power

I saw a tweet earlier today and I cannot stop thinking about it. I was surprised and a bit disappointed to see criticism of Whole Foods for something they are not required by law to do--provide information on the label or packaging regarding cross-contact/cross-contamination. But, we are all entitled to our opinion, and food allergy reactions can be absolutely terrifying! The customer had a severe reaction to a bakery item that was labeled as "vegan" and believed there had been cross-contamination with non-vegan ingredients. Thankfully, the customer is ok. Very scary!!! 

Please note the FDA does not regulate the use of the terms "vegan" or "vegetarian." It is potentially dangerous to assume those terms mean a food does not contain traces of eggs or dairy. 

I must admit that I have seen many customer stories about reactions to cross-contamination in Whole Foods bakery items over the years. Unfortunately, supermarket bakeries are notorious for cross-contamination. Often times, there is a CYA statement on supermarket bakery items because of the cross-contamination risk. It is our responsibility, as consumers, to read labels for the food allergies we manage. If you need to know about shared facilities or shared equipment, don't make assumptions. If the information is not clearly on the label, ask! It is up to us, the consumers, to look out for ourselves, and why shouldn't it be? We need to know how food should be labeled (by law), and if we need more information than is provided on the label, it is up to us to ask! We can read, we can advocate for ourselves, and ask questions. We have power! 

People with food allergies are not helpless. They are not victims. They are not vulnerable. Feel empowered, for you have a great deal of power and control over what you choose to eat. Exercise your power. Ask questions, and when in doubt, do without. 

Can food labeling be improved in the United States? Of course! I am not saying it is perfect or that it should stay as it is, but it is always our responsibility as consumers to look out for ourselves in the context of existing labeling laws. 

My food labeling dream: I would love to see all ingredients labeled on food packaging in the United States. That would be a fantastic improvement, and I think a realistic one. Why focus on 8 allergens when people can have allergic reactions to over 100 foods? 

What is your food labeling dream?