When my son, Morgan, was a little boy he continued to add more and more food allergies. He started with a peanut allergy reaction – breaking out in hives from touching a peanut butter sandwich at the age of 9 months. Thankfully, he didn’t eat it!
He added an egg allergy after a reaction to the MMR vaccine, and subsequent testing at 18 months old confirmed egg and also confirmed a severe peanut allergy. Our allergist suggested that he not eat tree nuts because of the likelihood of cross contact in the manufacturing process with peanuts.
Then, at the age of 3, he had full body hives and we went back for more testing to determine what food was causing the issue. To our dismay, he added another allergy – shellfish, but he hadn’t eaten shellfish the day of the hives, so we began to suspect sesame as the cause of the hives, but didn’t get that confirmed until a later allergy testing. We had further testing completed a few more times as he got older in the hopes that he would have outgrown a few of these allergies. While he did appear to outgrow egg allergy, it wasn’t until he was in high school that he was willing to go through a food challenge for eggs, which he passed. That was the only food allergy he had outgrown during his childhood.
He wasn’t supposed to be allergic to fish, as per one of the allergy testing results, yet had full blown anaphylaxis to one bite of trout on a camping trip a few years after this testing. That was a shock to say the least! So we added that food to his ever-growing list of food allergies.
He was managing peanut, tree nuts, shellfish, fish and sesame allergies from middle school through college and out into the work world. We basically had given up on him ever outgrowing any of these food allergies.
It has been 13 years since that last food challenge (he’s 28 years old now), and Morgan recently got brave enough to test for almonds, which had come back negative in two previous allergy testing results. A food challenge can be very anxiety producing, and we’ve found that Morgan has to REALLY want to eat the food to make the process worthwhile.
Here is Morgan’s summary of the food challenge as posted on his LinkedIn account:
You can probably imagine how excited we all were with this development! I suppose the moral of the story of food allergies is: never give up on outgrowing a food allergy!
Morgan has begun eating almonds in all kinds of foods (always ensuring that there is no cross contact with any other tree nuts since he still has those allergies), and also drinking almond milk. It has expanded his diet enormously and we are so thrilled!
Maintaining control of kitchen supplies and surfaces is a must for those with food allergies. Yet, there are many times when a shared kitchen is all that is available. When is it safe to cook there? And how do you do it? When do you need to find an alternative method to prepare food? What are your limits when it comes to safety?
College
When we were searching for a safe college living experience for our son, Morgan, who has allergies to peanuts, tree nuts, sesame, fish and shellfish, many colleges promoted their dorm floor “community kitchen” as an option for preparing safe foods.
These kitchens allowed ALL students to cook brownies, pizza or whatever else might be hitting their palate at midnight when the cafeteria was closed. Most of the kitchens we saw were supplied with utensils, baking trays and various other kitchen gadgets to be able to cook and/or bake.
Preparing meals for someone with food allergies, using the same utensils and pans that had previously been used to make brownies with walnuts for example, was not a cooking situation that would prove safe for Morgan without a large amount of cleaning surfaces and supplies first. And the potential for cross contact was very high in the cleaning up process, so we did not see this as a good solution.
Also, these college community kitchens relied upon the students to clean up after themselves, or to clean up after the previous student’s cooking attempts. Custodians and maids are frequently hired by colleges to clean the community bathrooms, but rarely are they cleaning the community kitchens.
We decided it was safer for Morgan, and it was his preference, to eat in the dorm cafeteria where cross contact could be monitored by the chef and employees. During his two years of living on campus at college he never prepared any food in a community kitchen.
University of Denver where Morgan attended college
Sharing a Kitchen with Roommates and/or Housemates
Once Morgan moved out of the dorms, he lived in an apartment with three other roommates. They had shared a very small kitchen. Morgan asked that none of his allergens be brought into the kitchen. Each of the four roommates had separate bedrooms, so he didn’t try to monitor what food they brought into their rooms. He just wanted to ensure that nothing was brought into the kitchen area.
There was only one “oops” in the 9 months they lived together, and the roommate who brought in nuts cleaned up everything – pans, countertops, utensils, plates, and even threw out the sponge – to ensure that Morgan didn’t have any contact issues.
During his senior year of college, Morgan moved into a house with two other roommates and kept this same request that none of his allergens be cooked in the kitchen. It worked well, and his roommates always honored his request.
Studying Abroad
While studying abroad in England, Morgan had to request special accommodations for his living and dining situation. Students who came from other countries to the University of Lancaster were provided a dorm room with a shared community kitchen to ensure that they met more students at the school while preparing their meals.
While that would have been nice, it wasn’t a situation that Morgan felt comfortable with. Students came from numerous countries, many of whom were accustomed to regularly eating the foods that Morgan was allergic to – especially nuts and sesame.
Morgan had to provide arrangements with the Disability Services Office to have an “ensuite kitchen.” That resulted in him being the only person using the kitchen in his dorm room. The room was tiny and the stove only had two burners, plus there was no oven! But he made it work for the 10 weeks of the school quarter while he was there, grateful that he didn’t have to try to monitor all the variety of foods in a community kitchen. And he still met many students in his classes and in the dorm.
Airbnb and vacation properties
Morgan traveled overseas before studying abroad during his junior year of college and stayed in a variety of Airbnb properties. He also travels a lot for work now staying in these properties. He has found that cleaning all of the cutting boards, utensils, and pans before using them to cook is a necessity.
He has also stayed in Airbnb properties where the host will provide breakfast or some other meal. This gives him the opportunity to explain his food allergies, and he has never accepted food from someone else.
He has stayed in a property where there were other “roommates” who used the kitchen. He was only in this situation for a week, and decided to not ask that all of the roommates refrain from bringing in his allergens. Instead, he cleaned the kitchen utensils that he was going to use for making oatmeal for breakfast, and ended up eating out for most other meals at safe restaurants.
A final word
What we’ve found is that it’s most important to listen to your intuition about a situation AND always be honest about your food allergies. It’s never worth accepting a food from someone because you’re concerned you’re going to hurt the feelings of your Airbnb host.
Bring plastic gloves to be able to do the cleanup in a kitchen without having any cross contact issues, or ask a friend to help.
You might have to pay more money in order to get a safe living situation or a safe traveling situation – but your safety is worth it!
Our son, Morgan, was 10 years old when he originally wrote the answers to these questions in March of 2006. This article appeared in a newsletter that we published, long before there were blogs
He was anaphylactic to peanuts, tree nuts, sesame and shellfish, and severely allergic to dogs, cats and other furry animals. He got eczema from food dyes, had mild asthma and was allergic to grasses, weeds and trees. At 22 years old now, he still has all of these allergies, plus he added fish to his anaphylactic food allergies.
What would you do if someone brought peanuts or nuts into your nut-free classroom at school?
I would just say, ‘I’m severely allergic to nuts. You can’t bring these into the classroom. Maybe could you bring in something else that is safe?’
Has this ever happened?
Once. One of my friends brought in cooked nuts with sesame seed on top for Chinese New Year. He said all right, but I don’t think necessarily he understood. He was from China.
What precautions are required for you to go on a field trip? Who carries your medications? You need to make sure that you are going somewhere that is safe for you. K-3 should have a parent/guardian that understands your food allergies and that can administer your Epi-Pen or other medications that are necessary. 4th and 5th graders should be responsible by now to carry their own medication and travel by their selves unless your parents do not feel comfortable with it.
Do you have a full time nurse at your school?
No, I don’t. She usually at most comes in once a week because she works at 4 different schools. She helps write up my Health Care Plan.
Do you participate in meetings to plan your 504 Plan and your Health Care Plan? Why do you think it’s important for you to be there? Yes, I do. Why? Well, so that I know my future teacher knows what I’m allergic to, and can also handle it. I think it’s important for me to be there because so that they get to know me, and actually understand what can happen if I go into anaphylactic shock. Also, I think I should be there so that I get know them and how it will work out with the classroom rules.
Morgan was 10 years old the end of January 2006 when this article was written originally for our February newsletter. He was then anaphylactic to peanuts, tree nuts, sesame and shellfish. He is severely allergic to dogs, cats and other furry animals. He gets eczema from food dyes, has mild asthma and is allergic to grasses, weeds and trees.
Where are your EpiPens® kept at school?
Just in case if I have an allergic reaction at school, I can use them. They are not by my side in the school. Two are in the office – one to stay there and one to go out to the playground with the monitor. I don’t think that is the greatest place to put them though because they are locked away. I also have one in each of my classrooms. (Mom’s note: in 2006, it was not legal for Morgan to self-carry his EpiPens, therefore other arrangements had to be made. It wasn’t until 2007 that he began to self-carry).
Do you trust that your teacher would know what to do if you were to have an allergic reaction?
Yes I do.
Do you trust the office staff to know what to do?
Not really. We had a boy a little older than me that had an allergic reaction and they did not use his epinephrine. They thought he had the flu. He did not die thankfully.
When you get older, do you plan on teaching your friends how to administer an EpiPen®?
YES I do! So they know what is happening when I’m in shock and what to do. Usually one of my friends is close by at all times.
What did you teach your Cub Scout Den about emergencies and food allergies?
I taught them how to use the EpiPen® and when to use it. I taught them the process which is put the EpiPen® in my thigh, call 911.
With the recent death of a girl dying after kissing a boy who had eaten peanut butter, what different behavior will you practice when you get older?
I’m never going to date a girl who eats peanut butter all the time. It is just too dangerous.
Will it be difficult to tell a girl what she can eat?
No. Not necessarily. It won’t be that hard just because it is a situation between life and death. I don’t want to risk my life.
Recently, my son, Morgan, and I spoke at a FARE Community Engagement Council event in Denver on “Preparing for and Going to College with Food Allergies.” It was a wonderful event with dozens of attendees – both parents and teens – managing food allergies.
We shared first about what parents can do to prepare their child for college during grades K-12. You can read that blog post here.
Then, we spoke about how to go to college with food allergies, and the necessary steps to find out the information about food allergy awareness at a school.
I am frequently asked how to begin searching for a safe college when you/your child has food allergies and/or asthma. What questions do you ask when you visit a college? When should you ask these questions?
It was very important for me to remember that my son was the one going to college, so he and I had several conversations prior to visiting any college about what he wanted to learn during a college visit. I asked him to develop a list of questions that he had for college officials about living arrangements, eating in the cafeteria and academic interests. We then compared our lists and came up with the following questions pertaining to the food allergies and asthma. Your list may also include specific academic interests.
Here’s a list of questions on food allergies and asthma that are useful when visiting a college:
Are ingredients listed on all foods served in the cafeteria? If not, is there an app or a website that will have the ingredients?
Is there a chef on site to take special orders?
Are the cafeteria workers trained on food cross-contact?
How many of your child’s allergens are regularly served?
Can my child and I speak with a dining manager about my child’s needs?
How old are the dorm buildings and cafeteria facilities?
Has there been any water damage or flooding in the past?
Are the dorms air-conditioned? (If not, what documentation will be necessary to submit for a medical necessity to live in air-conditioning?)
Are pets (such as dogs and cats or other emotional support animals) allowed in the dorms?
Can the resident adviser be trained on the administration of an epinephrine auto-injector?
Is stock epinephrine carried by security personnel on campus?
Can roommates be selected to ensure no food allergens are in the dorm room?
How is a 911 call handled on campus?
Is food allowed in classrooms and lecture halls?
Is smoking allowed on campus?
What paperwork is necessary to complete for the Disability Services Office to provide accommodations?
Yes, this is a long list of questions, yet you may have more depending upon your child’s allergies and needs.
When do you ask these questions?
I’d suggest first starting with the college website. If you go to the Dining Services page on the college’s website and find NOTHING about food allergies, that is your first clue that you may have an uphill battle. Schools that are aware of food allergies put that information on their website along with who to contact to ask questions.
The Housing page on a college website will generally not have any information about food allergies, but will likely have a contact person for questions.
We found that Disability Services website pages are usually geared more toward those with learning disabilities; however a few schools are starting to incorporate information about food allergies and what paperwork will be necessary. We waited until our son was accepted into his school of choice to begin specific conversations with Disability Services about our son’s situation. While a school should not deny admittance because of a disability, there’s no reason to give too much information prior to acceptance.
We found it best to have specific appointments set up with the Housing Office and with Chefs in the Dining Hall when we visited a campus to learn more about how they managed students with food allergies. Prior to him being accepted, we only asked general questions about what accommodations could be expected for a student with food allergies and/or asthma.
As for the Disability Services Office, we visited with a representative after my son was accepted to the school. We asked very specific questions about paperwork necessary for our son to receive accommodations. We found out that many schools will require that your child have recent testing confirming food allergies and asthma if specific accommodations are being requested. In other words, a skin prick test from 10 years ago was not going to suffice. A letter from our allergist delineated the specifics of what Morgan was going to need to safely attend college. The Disability Services office paperwork is best completed in the summer prior to the school year starting so that everything will be established once school starts. And remember that everything is completed and driven by your child once they are 18 years old. Schools expect your child to advocate for themselves.
Most colleges in today’s environment have managed students with food allergies. That can be a good thing if your child expects to eat in the cafeteria. It can be a negative thing if the college expects your child to have allergies similar to other students they’ve encountered, and you want a different accommodation.
There are several other lists of colleges and their accommodations for students with celiac and/or food allergies that might be helpful. Of course, it’s always preferable to use these lists as a guide and to visit the college yourself to ask questions specific to your child’s needs.
