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!
I have long been challenged with dry eyes. My optometrist and I continue to look for ways to mitigate my scratchy eyes and blepharitis (inflammation in the eyelids where the oil glands become blocked). I had another flare of my dry eyes recently, and my doctor suggested a new product: Optase HyloNight. I was excited that not only would the product help my dry eyes, but would also help the blepharitis. Too many times, a product that helps one issue causes the other issue to get exacerbated.
I carefully read the Amazon page about the product and ordered it. I’ve learned with all of my food allergies and other sensitivities to be thorough in vetting any new product I’m going to introduce, especially if I’m going to be putting it into my eye.
When I received the eye ointment, I read the box and the Instructions for Use that was inside the box. Imagine my surprise when I read the statement, “May Contain Peanut Oil” in both places!
The first thing I did was to go back to the Amazon product page to re-read the Inactive Ingredients that were listed there to make sure I hadn’t missed the information. Here’s what I found:
As you can see in the Inactive Ingredients, there is no mention of peanut oil! I was shocked.
For those of you not versed in the language of peanut oil, there is cold-pressed peanut oil which should be avoided by anyone who has peanut allergies, such as myself. There is also highly refined peanut oil, which shouldn’t contain the protein that creates the IgE reaction in those people with the allergy. However, your doctor can best inform you whether you should refrain from ingesting either form of peanut oil, depending upon your specific circumstances.
There is no indication on the box what kind of peanut oil was used. I reached out to the seller of the product to provide feedback, and never received a response. Therefore, I decided it best to not use the product at all.
I also informed Amazon that the product page is not complete, yet I did so weeks ago and there has been no change to the information on the page. I also provided a review of this product so that other potential buyers with peanut allergies would not purchase it.
It took several phone calls and messages to get a refund on the product since a refund is not generally given from Amazon on eye ointments. I had to explain that the product page is not accurate.
This situation is a good reminder to ALWAYS read the information of any product that you’re going to use on yourself or your child with food allergies. You can never be too cautious!
Twenty years ago this month, I started AllergicChild.com. The Internet was still barely beyond the idea stage, and there were VERY few websites pertaining to food allergies.
I had just written my book, “Allie the Allergic Elephant: A Children’s Story of Peanut Allergies,” which my husband and I had self-published. It was the first edition of the book, and several newspapers across the US and Canada had run an article about the book giving out our office telephone number as a way to buy it. I was getting phone calls from numerous families managing their child’s peanut allergies wanting to make a purchase. Hence the need for a website to reach across the world, and to help with lowering the number of phone calls!
The website opened up a lot of communication with families trying to figure out how to send their child to school safely; how to go to worship services and how to explain food allergies to extended family members. I literally received hundreds of emails every week asking me every question you can imagine about how to manage their child’s food allergies.
I answered every email I received. I knew that I had one of the few websites on the Internet that had information about food allergies, and people were always so thrilled to be able to reach a real person who would answer their questions. And many times, I had questions for them as to how they were managing issues that we had yet solved. It was a healthy exchange of ideas.
The website soon included pages detailing our experience of sending our son to preschool. He turned 4 years old the end of January in the year 2000, and we had several months worth of preschool stories to share. I continued to add pages to the website with other experiences as we tried to navigate life safely.
In December of 2005 I began to send out a monthly newsletter. Blogs had yet come into being, and this was the best way to share food allergy news with our followers. My son was almost 10 years old by that time, and he had his own column in the newsletter called “Morgan’s Corner” where he answered questions. Readers would send in inquiries about how Morgan dealt with the emotional aspects of food allergies, such as bullying or being left out of activities. The American with Disabilities Act had yet to be amended to include eating as a major life activity, and sadly schools were not as aware of accommodations to keep children with food allergies involved in all of a classroom’s curriculum.
We had a lot of information on our website about how to read a label to ensure your child was safely avoiding their allergen since labels had no laws governing what had to be listed. In January of 2006, the Food Allergen Labeling and Consumer Protection Act (FALCPA) became effective. This changed our family’s ability to be able to read an ingredient label and know what was in the food. Labels still had a long way to go to become as reliable as they are today, but it was a great starting point!
The ADA Amendments Act of 2008 became effective January 1, 2009. Morgan had been attending a school that was very aware of 504 Plans and had already placed him on one at the start of kindergarten in the fall of 2001. This Act helped many other students across the US have access to accommodations where school districts weren’t as educated about food allergies.
Facebook seemed like a good place for us to extend our reach, and in 2009 we started our AllergicChild group on the platform. It has grown organically up to over 13,000 followers today.
In 2011, we started the blog that I continue to this day. Morgan has added many of his own experiences to the blog including middle and high school trips, preparing and going to college, studying abroad in college, and being in the work world. Raising a good self-advocate was my primary purpose as Mom, and that took all of his 18 years of living at home!
We added a category of Eosinophils & Mast Cells to the blog in 2013 after both my daughter and I got diagnoses. We found there is a big overlap in families who have food allergies, to manage these issues and even celiac disease too. And we continue to share our experience and our hope for a cure.
Thank you for coming along for the ride these past 20 years! We couldn’t have done it without your support, emails and readership. Hopefully we’ll have a cure for food allergies so we won’t need to be here in another 20!!
For those of you who regularly read this blog, you know that I’ve been looking forward to going back to Iceland, having stopped in Reykjavik for 36 hours on a layover to my study abroad program in the fall of 2016. Three years ago, I didn’t have near enough time to travel to all of the areas of Iceland that I’d heard so much about. I promised myself that I’d come back, and when I mentioned this to my Dad, we decided to make this a Father/Son trip.
The last blog post, Preparing for a Backpacking Trip to Iceland, outlined what it took for my Dad and me to prepare for the trip. Now, I’d like to tell you about our epic trip in August!
West Fjords
Icelandair
We flew Icelandair just like I flew back in 2016. I
confirmed their policy of not serving peanuts on board the airplane. I didn’t
ask for any announcement to be made, and pre-boarding wasn’t necessary for me
since I had plenty of time to wipe down my seat and tray table. They do sell
food on board, but I really wasn’t worried about it since we took an overnight
direct flight from Denver to Reykjavik. I figured that not many people were
going to eat. And if I had a seatmate who pulled out peanuts or my other
allergens (tree nuts, sesame, fish or shellfish), I wouldn’t have had any
problem asking him/her to please put them away.
On our flight home, an announcement was made asking
passengers to not eat nuts during the flight, so there was someone else on
board with an allergy. It was nice to know that they would make that
announcement!
Eating Out at Restaurants
Once we arrived in Reykjavik, we got our rental car, our
backpacks that we had checked as baggage, and we went out to eat brunch. We ate
out a few times in our two weeks in Iceland, and in general I can say that
restaurant food is very expensive. After all, most foods have to be imported
into the country. Their specialty is lamb, which was a staple on almost every
restaurant menu. There are sheep everywhere on the island. One restaurant even
had the sign, “Free Range since 876!” – the year that Iceland became a country.
We did have lamb one night in a ‘gastropub’ which is kind of a mix between a
bar and a restaurant. It was delicious!
Having been in a Scandinavian country in 2016 – I did a research
project in Copenhagen, Denmark for a month prior to studying abroad – I knew
that breads were going to be difficult for me to eat because of my sesame
allergy. Iceland was no different. The bread provided in restaurants, and those
that we found in grocery stores all contained or stated “made in a factory”
with sesame. Their bread is kind of bland, so sesame and other seeds are used
to add flavor. So, no bread for me!
Iceland also has a great fishing industry. My Dad had decided prior to our trip that he wasn’t going to eat any fish while we were camping or in a restaurant, since I have such a severe allergy to fish having had anaphylaxis in the past to one bite of trout. Every restaurant we ate at also had fish on the menu, but the ones we chose (and believe me, we only ate out about five meals the entire vacation), didn’t have fish as the main item on the menu. I was able to find waffles for our first brunch in the country, which were delicious.
Father and Son
All of the wait staff in the restaurants spoke English very
well, so I didn’t have any difficulty communicating about my food allergies and
how to keep me safe from cross contact. Many of the wait staff were from
different countries, and were temporary summer workers. It was great to find
out where they hailed from – Czechoslovakia and Denmark were the home countries
of two of our waiters.
One night we went out for hamburgers, which were great. When
the bill came for $50 US dollars, we realized that cows weren’t habitants in
the country, so the meat had to be imported causing the price to be so
extremely high!
Most restaurants had a local favorite, Smørrebrød, on their
menu. This is an open-faced sandwich cuisine popular across most Scandinavian
countries, and many have fish on top. Of course, with the bread also being
unsafe, the combination of two of my allergens meant it was definitely not the
meal for me!
Food for Camping
We brought Mountain House freeze dried foods for all of our dinners at the campsites which could be prepared in about 10 minutes using a JetBoil and boiling water. These meals saved us money on food, and also made it easy at our campsites to prepare dinner when it was windy or rainy. By the end of the trip, we realized we bought too many Chicken & Rice meals and were begging for some variety… but at least it made dinners easy throughout our trip!
Morning view from my tent at our campsite
For breakfast, lunches and snacks, we went to a grocery store
every day or two and purchased fruit, vegetables, Skyr (an Icelandic yogurt
that was wonderful), wraps that were safe, ham, bacon, cheese, Ritz crackers,
etc. Mainly we were purchasing foods that didn’t have many ingredients and/or
weren’t processed. Iceland is in the European Union, and the labeling was very
good. Some labels were in English, and when they were in Icelandic, I had my
Google translate app that allowed me to take a picture of the label and get the
ingredients translated. I did look up the Icelandic names for all of my food
allergens prior to the trip so that I could be prepared to read those on any
label. Once we found a safe brand of wrap, for example, then we’d always look
to purchase it in the next grocery store as we traveled around the country.
We rented two gas stoves, two coolers, and a table from a
camping store in Iceland, but we brought many other items with us like our
sleeping bags, tents, pans, plates and utensils in our backpacks. A few
mornings when the weather was being difficult to be able to cook an omelet, we
opted for fruit and Skyr instead and hit the road to see the sights.
Sleeping in Hotels and Airbnb’s
We stayed in a Hotel the first night we arrived in Iceland.
It was kind of a funny situation in that I booked the room and neglected to
notice that there was only one queen sized bed, and not two twins as I had
assumed from the picture. So, my Dad and I got to be really cozy the first
night in Iceland!
I have filters in my searches for hotels and Airbnbs to
ensure that the places I stay have no pets, but that really wasn’t an issue in
Iceland. We didn’t see any tourists with their own pets, however there were
some dogs owned by store owners, but we didn’t see any in the Airbnb’s and
hotels we stayed at.
One night, about halfway through the trip, we got rained on all night. Then the next day, we got soaked visiting a waterfall. All of our camping gear was wet, and all of our clothes too! In the moment, we were entirely miserable and ready for a night to dry off, so at the last minute we decided to get a hotel room. The cheapest room we could find was $260 US dollars, and we were grateful to find it! We needed it for our physical comfort, but also for emotional comfort after being wet and freezing.
Yep we looked and felt cold …. freezing!
The only other time we stayed at an Airbnb was the last two
nights before we left to come back home. So most of our nights were spent
camping, sleeping on air mattresses and enjoying the quiet solitude.
WiFi in Iceland
We purchased a mobile hot spot through our rental car company,
which was great. Even when we only had 2G, we could at least communicate by
calling using cellular over Wifi if we needed to make a call. Most of the time
we had 4G. Cell service was available throughout the country. There are also
many Wifi hotspots in Reykjavik, the capital city, but we rarely found one
while in smaller towns around the country.
Seeing Iceland
We spent our days in our rental Toyota RAV4 driving from one beautiful location to another. We would drive hundreds of miles every day, starting from Reykjavik and traveling counter-clockwise around the island. We camped out on the beach one night, and since the daylight lasted until 10 at night, we got to enjoy the scenery even more. We drove through numerous fingers on either side of fjords around the island and got to see waterfalls everywhere.
Skogafoss Waterfall
We’d get out of the car to hike into locations to see more scenery,
and then choose where we wanted to camp at night as long as it was a designated
camping site. Many times we were the only campers, which was great.
It was just the best trip ever. My Dad and I laughed, talked
and walked throughout the two weeks.
Trip Suggestions for You
If you’re thinking about a trip to Iceland, I’d say DO IT!
Here are some suggestions I have:
Expect to spend a lot of money. Reykjavik is at
least $100 US dollars a day. Around the country, you will likely be spending at
least this much as you experience the country! Hotels or Airbnb’s will likely
cost $300 US dollars a night.
Learn the Icelandic words for your allergens
Get the Google translate app on your smartphone
Get to know some of the staple dishes (like Smørrebrød)
so that you can manage your allergens
Ask for help if you need it. Icelandic people
are incredibly nice!
In the fall of 2016, our son, Morgan, flew through Reykjavik,
Iceland, on his way to study abroad. He was in the country for only 36 hours,
so didn’t get a chance to see much of anything beyond the city. He promised
himself that he would get back to Iceland to see all of its natural beauty
sometime in the future.
The future is now! For two weeks in August, he and my
husband, Robert, are going to share a trip of a lifetime backpacking in
Iceland! The preparation for this trip has taken almost 9 months to put
together, and the food is almost the least of it.
Iceland is part of the European Union, so it wasn’t necessary to fly to an embassy here in the USA to obtain a Visa. Both already have passports, so that box was checked easily.
Both also carry medications, and Iceland has strict requirements of medications being in the original prescription box and the medication must not expired. This has required some work on Morgan’s part.
Morgan is now in the work world, and has his own medical insurance. He needed to find an allergist in the Denver area, where he now lives, to obtain current prescriptions for Albuterol, a steroid inhaler and his Auvi-Q’s. This was a big step because he has only seen one allergist his entire life, and she retired just as he was graduating from college. He wanted to find the same wonderful care he had received from her, and as luck would have it, he found an allergist that had trained with her many years ago! His enormous history in three medical files was copied and sent to this new allergist. Morgan forewarned the doctor that there was 20+ years of appointments, skin prick tests and reactions to pore over. All went well with the new patient appointment, and as a Mom, I’m thrilled Morgan has found a very capable allergist to continue his care!
Since Morgan flew Icelandair previously, and had no difficulties at all, they decided to fly the same airline. Morgan always brings his own food on airplanes, and doesn’t expect to be served a safe meal. They don’t serve peanuts on flights, which is great!
The next step was to figure out what the father/son duo were going to pack to bring with them on the airplane. Robert and Morgan have an annual week long camping trip each summer in the Lake City area of the Colorado Rocky Mountains. It is a trip they both look forward to every year. They have all the gear (and then some!) that they would need to camp in the Rockies. However, Iceland is a little different in that they don’t allow campfires. So, they will be renting a camping stove in Iceland, along with tables and chairs. And they will bring jet boils for water heating.
Everything in Iceland is expensive – food, camping equipment and sleeping bags. They will be bringing as many supplies as they can fit in their suitcases while ensuring the bags are under the weight limit. Even frying pans from Walmart will be packed in their luggage!
They plan on purchasing an abundance of their food in Iceland
as they travel from location to location; however, as a backup they are also
bringing Mountain House brand freeze dried food that just need hot water added.
This too will be packed in their luggage. They don’t want to risk trying to
find freeze dried food in Iceland, since this brand may not be available. Mountain
House is the only brand that we have found that doesn’t have Morgan’s allergens
– peanuts, tree nuts, sesame, fish and shellfish.
In Iceland, camping is allowed only in designated camping
sites. The good news is that there are no bugs, spiders, mosquitos or snakes.
And the only animals are arctic fox, mice, rabbit and reindeer – so nothing
warranting concern for an animal getting aggressive like bears will in the
Rockies.
Since Iceland is known for its fishing and a fish-oriented
diet, they will be taking extra caution with Morgan’s anaphylactic fish
allergy. Morgan can’t even stand the smell of fish, so shopping in stores or
markets may get interesting!
This is a trip of a lifetime, and the two are SO excited for this adventure! I will be reporting back with a blog post after they return, and I’m sure the two of them will be providing many pictures and commentary too.
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!
I have recently been hearing from numerous people asking me how to obtain a mast cell activation diagnosis. What kind of doctor should I see? What kind of tests should I have done? Is there a blood test for it?
I share what I had to go through for 5 years before getting a diagnosis. I saw numerous different doctors – a primary care medical doctor, a D.O. primary care doctor, a private practice allergist, a private practice gastrointestinal doctor, an allergist and a GI doctor in a medical research facility…the list goes on and on. While I had numerous blood, urine, skin prick and food allergy tests, endoscopy and colonoscopy tests, no one could figure out why my stomach hurt 24 hours a day and I was continually losing foods in my diet. Everything came out “normal” in these tests; however, no doctor was actually biopsy testing for mast cells.
The food allergy and skin prick tests showed that I had some food allergies, but I wasn’t able to eat the foods that I wasn’t allergic to without severe gut distress. In other words, I was still reacting to foods that I wasn’t allergic to, and this was baffling for my allergist. This is a common refrain of those with mast cell issues. When I read online about someone who says that they are down to only tolerating a few foods, I ask the question, “Has anyone mentioned a mast cell activation disorder to you?”
Sadly, at this point, there is no blood test to determine a mast cell activation disorder. I got a diagnosis of a mast cell activation disorder when I saw a GI doctor who sent out my endoscopy lab biopsies to be stained for mast cells and tryptase. He also stained for eosinophils, and there were plenty of those in my esophagus and intestines also. By the time I finally saw a doctor who knew what to look for and how to accurately test me, my mast cell count was 30-40 per high powered field, and my eosinophils were 80-90. Most doctors agree that you want these counts below 15 per high powered field. Finally, I knew why I was feeling so terribly!
Mast Cell granules which contain mediators
What I found is that medical doctors know a protocol to test for systemic mastocytosis, and they are more than willing to do that. I had one doctor who wanted to do a bone marrow biopsy on me. Thankfully I knew that I didn’t want that type of an invasive test. I had read enough about the systemic form to know that I didn’t have those symptoms.
There’s a great write up on diagnosing all types of mastocytosis and mast cell activation syndromes on The Mastocytosis Society website here. The interesting item to point out when it comes to mast cell activation disorders is that one of the criteria for diagnosing it is to put the patient on H1 and H2 inhibitor medications (generally Zyrtec and Zantac) to see if they feel better. If the patient feels better, then it must be a mast cell disorder! Backwards logic.
Most people seeking a diagnosis have been dealing with all kinds of odd manifestations of mast cells for years before they get to a breaking point and decide they need to get a diagnosis. Most mast cell activation issues manifest with gut involvement. A person’s bladder may be affected (a diagnosis of Interstitial Cystitis involves mast cells), but they also have gut issues. The good news about the gut involvement is that an endoscopy can be completed and biopsies can be stained to determine if mast cells are proliferating.
So, first thing I suggest to people is to have a food allergy testing to see if there are foods to which they have a true allergy. The second testing I suggest is to get an endoscopy and have the biopsies stained for mast cells.
If you do receive a mast cell activation diagnosis, you want to get on some type of antihistamine (and maybe even a mast cell stabilizing medication) as soon as possible. The longer that a person delays, the longer that mast cells will be activating, and the worse you will feel. This activation can create havoc on organs, and the cycle only gets worse. Soon it’s not only your gut that is affected, but the mast cells are proliferating at such a high rate that they can even move into your brain. You then begin to experience “brain fog.” This is a neurological issue where it’s difficult to concentrate, to remember things and to follow conversations. This cognitive dysfunction can affect people of all ages when there is mast cell involvement. I’ve experienced it myself when I was the sickest. Thankfully, by getting on a cocktail of antihistamines, a steroid, and a mast cell stabilizer for a few years, I was able to come back to my body. From there, I’ve done many other non-Western modalities to help my body heal.
I don’t know of one person who was suddenly able to get better without any type of medical intervention when it comes to a mast cell activation disorder. But you can get better! I am living proof of that.
Mast cell issues are increasing at a phenomenal rate currently. Ask any allergist if they have mast cell patients, and virtually every one will say yes. They will also probably say that they are some of the sickest patients they have, with so many symptoms it’s difficult to know where to begin to help them!
As a patient, we need to advocate for ourselves. Listen to your intuition. If a test doesn’t seem appropriate for you because of the cost or because it’s too invasive, speak up.
Our son, Morgan, was 10 years old when he originally wrote the answers to these questions in April 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.
Now that you’re getting older, do you ever go on school field trips without a parent joining in?
Only once so far. It was to a mining museum. I brought along my Epi Pens and Benadryl just in case if something happens. I have chosen on my next field trip, to Bent’s Old Fort in Eastern Colorado, to go with neither of my parents joining.
What do you have to bring in order to be safe?
I have to bring safe snacks, my own lunch, and of course my Epi Pen. I also bring Benadryl just if I get itchy eyes or something that is mild. I also make sure to have a friend nearby so that he knows what is happening and can tell my teacher to give me my Epi Pen if that would ever be necessary.
What did you experience on a recent field trip that could have been unsafe?
At the mining museum, we panned for gold. I did not participate because from an experience at the Denver Museum of Nature & Science. They had a little exploration box where you could dig for dinosaur bones. I could have done it, but on the sign, it said: Sand is made from Walnut Dust. I never did go do that again! At the Mining Museum, there was dirt and things at the bottom, along with gold flakes. I did not want to take risks just in case if the water was some type of oil, or whatever.
Did you feel left out not being able to participate in that?
Actually not. I have to be able to cooperate with my allergies and my life.
What do you plan on doing on your next field trip that goes all day and is 2 ½ hours away by bus to Bent’s Old Fort?
I plan to bring the same things as the Mining Museum trip – snacks, lunch, and my Epi kit which includes all my medicine. I also planned with my teacher that everyone will bring a safe snack and lunch, plus safe things to do, like not trade food things.
Are there any field trips that you wouldn’t want to participate in?
Yes, quite a few. The petting zoo, the cookie factory (if we ever went there), and a lot of other things that wouldn’t be safe for me if they were one of my allergens.
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.
