EDIT: This post was originally written and published in summer 2016, but I’m updating for Food Allergy Awareness Week, May 2018
Help spread awareness with FARE May 13-19, 2018. Created in 1998 by the Food Allergy & Anaphylaxis Network, now FARE, Food Allergy Awareness Week is honored each May to shine a spotlight on the seriousness of food allergies.
As you all know, both of my kids have severe food allergies. It’s been a very stressful and trying journey and I’ve tried to do my best in documenting our journey and raising awareness on this incurable disease. It’s a daily battle and something that has consumed our lives for the last few years.
Being that it’s currently Food Allergy Awareness Week, I thought I’d write some posts answering some of the most common questions about food allergies, since I get a lot of questions! Today’s post will highlight some of the more general questions I get regularly…
What is a food allergy?
I’m going to answer this in general terms…I could get into all sorts of medical specifics like igA and igE antibodies, mast cells, histamine…but I’ll spare you that, because it’s a lot of information! Put simply, a food allergy is when you’re body recognizes a specific food protein as an invader and your immune system reacts to that in an adverse way.
What happens during an allergic reaction?
A lot of things, actually…it can be as simple as a rash or a stomach ache, runny nose or cough…but can escalate to life-threatening levels in the instance of anaphylactic shock. For Lark, she goes into anaphylactic shock quite easily from all of her food allergies. Even simple contact of her touching offending foods or someone kissing her after they’ve eaten one of her allergenic foods can cause a reaction in her. It usually starts with a rash/hives, turns into swelling of her facial features sinuses and throat, runny nose, congestion, eczema flare-ups vomiting and breathing distress within her lungs. (Read more about the kid’s eczema here and Lark’s asthma here) Again, there’s various bodily functions that come into play at the cellular level, but I’ll save you the details or this would be a novel! What happens inside her body, that you can’t see from outside, are her oxygen and blood pressure plummeting to dangerous levels. It usually requires a hospital stay. Lark also suffers from what are called ‘biphasic reactions,’ which means she can have a reaction flare up again at any point within 72 hours of the initial reaction. This has happened a few times where we thought we made it through a reaction, only to have her develop a worse reaction the next day. ( You can see a biphasic reaction part one here and part two here, which ended in hospitalization)
For Arlo, he typically develops a rash over the trunk of his body and on his face, his eczema flares up and he gets a bit of a delayed response with stomach aches, gas and digestive distress. So far, he hasn’t gone into anaphylactic shock from his food allergies and our allergist feels very positive about his outcome in the future with his food allergies.
For myself, I typically get a rash/hives, itchy mouth and/or congestion and cough. I’ve had few instances of the severity that Lark has in adulthood, but was as allergic as she is to several things as a child. I can only remember being hospitalized once and that was around age 7 or 8 when my mom had to rush me to the emergency room after eating something suspect. But I was hospitalized frequently as an infant.
Top left is Arlo after eating barbecue sauce that contained soy. This was near the end of the reaction, but you can see the rash and hives on his side, under his rib cage. Top right and bottom left are severe hives in Lark after eating a mystery food. We assume it was dairy, but we weren’t sure at the time. Bottom right was her first anaphylactic episode after drinking regular baby formula at 5 months old when I started to supplement in an effort to wean her from breastfeeding. I’ll get more into that in another post. We also tried to give her goat’s milk once, a recommendation from my mom because it was a type of milk I could tolerate as a baby. Note to food allergy parents: Goat’s Milk is VERY similar in makeup to cow’s milk and is not recommended for a dairy-allergic child. Lark could have died that night. It’s the worst reaction she’s had, to date, and we didn’t treat her properly because we weren’t educated enough in the dangers of anaphylactic shock and we hadn’t yet been prescribed an Epi Pen. You can see her swollen face, severe hives and rash. Just looking at these photos makes me feel like the absolute worst mother on the planet…a few weeks later, she was diagnosed, officially, with food allergies.
What foods are you/your kids allergic to?
- Several Nuts (including peanuts, which is actually a legume and sometimes classified differently)
- Sesame Seeds (Diagnosed at age 2.5)
- Mustard (Diagnosed at age 2.5)
We know she’s anaphylactic to dairy and sesame seeds, but she’s yet to have specific contact with any of the others that we know of, so we can only assume she’s anaphylactic to those as well.
Arlo gets rashes and stomach upset from soy, but I’m really not sure what happens to him with dairy as he’s not been exposed to it since he was an infant. We’ve been given the okay by his allergist to ‘challenge’ it by giving him some dairy and seeing what happens, but I haven’t been brave enough to try since I’ve seen Lark have life-threatening reactions several times in the past.
Preservatives and artificial colorings that have never been fully identified. For instance, when I drink alcohol I can break out in pretty severe rashes at times but that can be from preservatives, sulfites, coloring, flavoring…it’s hard to say. Those types of reactions are random and I can’t predict them. Pineapple makes my mouth itch, which I thought was just from the acidic qualities of pineapple, until an allergist actually tested me for it. I’ve not had a reaction to nuts, that I know of…other than the fact that I hate peanut anything, even as a kid you couldn’t get me to eat peanut butter and jelly sandwiches for anything, which my previous allergist thought may have arisen from adverse reactions to eating peanuts or peanut butter and subconsciously realizing they made me feel bad and I developed and aversion to them. But due to the unpredictable nature of food allergies, specifically nuts, I’ve been instructed to avoid them anyway.
I was severely allergic to dairy and wheat as a child and still have a bit of an intolerance to dairy.
When did you find out you/your kids had food allergies?
Lark was diagnosed at 6 months old after a history of reactions and a round of skin testing. She’s since been skin-tested about every year. Her allergies began with eczema shortly after birth, and escalated to episodes of anaphylactic shock by the time she was 5 months old.
Arlo was also diagnosed around 6 months of age, officially. I say officially because we actually knew quite early with him because I was able to recognize the signs earlier with eczema, reflux, colic-like symptoms and rashes. He was skin-tested at 6 months old after several months of speculation, which confirmed his allergies.
I was diagnosed with food allergies as an infant as well, I’m not sure how old I was, but I know I had problems from birth until about 2-3 years of age. I was also retested about 8.5 years ago when I was having some health issues and needed answers. This is when I found out about the nut and pineapple allergies.
How are food allergies diagnosed?
It’s sort of complicated, but it requires both a history of reactions and a positive scratch test. An allergist will scratch or poke you with proteins you suspect you’re allergic to. You wait about 20 minutes and then the allergist measures the size of the hive, if it’s present, and the weal, which is the redness around the hives. They come up with a number and the size of the number determines whether or not it’s a positive or negative number. It can be very unpredictable, that’s why they like to have a history of reactions to back it up. Especially in the case of children because their allergies can change very quickly over time. A positive skin test doesn’t always mean you’ll have a bad reaction to that food. It’s just a gauge of sensitivity to specific food proteins. Like I said above, neither Lark nor I have had reactions, that we know of, to nuts or peanuts, but because both of us have severe reactions to other foods, it’s more likely that we COULD have a severe to those. I hope that makes sense. I’m also difficult to test due to several allergic skin issues, which I’ll address in a different post…They can also analyze your blood and test it against your allergens as well. It’s called RAST testing and Lark had it done at 3 years old.
Left is my back during skin/scratch testing. These aren’t all foods, but it shows how badly my skin reacts to culprits. Again, it’s aggravated by some skin issues I’ll address in another post. At right is Lark during her testing at age 2.5…you can see her first testing here, second testing and Arlo’s initial testing here…you can also read more about it here and here.
What causes food allergies?
There is no known cause of food allergies. There does appear to be a genetic element of it, but the depth of this is not fully known. I was not surprised my kids developed allergies, being that I have several allergies myself and I do believe genetics has played a role. My aunt, grandmother and brother on my dad’s side of the family also have food allergies, but no one on my mom’s side does. Genetics are funny like that! But the foods you’re allergic to aren’t genetic. It was previously believed that if you have a peanut allergy, your kids are at risk of a peanut allergy, but that’s not entirely true. You’re just more at risk of allergies in general and peanut just so happens to be a common allergen. The top 8 allergens are Dairy, Eggs, Soy, Peanuts, Tree Nuts, Wheat, Fish and Shellfish. I tend to think that the age of processed foods has a big role in this disease. I think modified foods and added chemicals have to ability to alter your immune system in irreparable ways.
How do you cure/treat food allergies?
There is no cure for food allergies. The only universally safe treatment is complete avoidance of offending food. I say ‘universally’ because there are other treatments for them, like the peanut allergy patch which is placed on the skin and administers peanut protein over time to desensitize you to peanut proteins, but it’s not always successful or not always an option, like in the case of Lark, who is too young. There’s also a controversial treatment, some touting as a cure, called Oral Immunotherapy or OIT. The basis is this…exposure to your allergens over time under the care of a physician will decreases or eliminate your sensitivity to that allergen. I have a very good friend who put her daughter through it for dairy and egg allergies and has mostly had success, but I’ve also read stories about failure with this treatment. So I’m on the fence about it. I love the research and theory behind it, but I think it’s relative to each individual’s degree of severity. I’m not brave enough, thus far, to try it with Lark. Not to mention, it’s difficult to find a doctor who practices OIT.
We typically treat with Benadryl, when reactions are small and we also carry Epi Pens wherever we go for Lark. I’m supposed to have them also, but due to price and lack of coverage, I’ve not had one in a few years. Lark and my asthma meds often come into pay as well for food allergies.
Will your kids grow out of it?
In most cases of food allergies, yes, they will outgrow some or all. In Lark and Arlo’s cases, we don’t know. We can’t know. Food allergies are extremely unpredictable. So far, neither child has outgrown them. We were told, with Lark, that she could outgrow them by 12 months old. They tested her again at 12 months and she was nowhere near outgrowing them. SO then they said by age 3 and likely allergy-free by school ago…age 3 came, they re-tested her and conducted RAST testing and we were told that her numbers in the RAST test were “off the charts” for all of her allergens and that expectations for when she will outgrow them cannot be predicted. So for now, we wait. If you develop allergies as an adult, it’s likely you’ll have them for the rest of your life. Mine are difficult to assess, but my guess is that mine will remain.
Read more about what it’s like to be a food allergy mom here…
Every day I have hope that my kids will wake up and magically be ‘cured’…as a mom, it’s difficult knowing that basic foods people eat every day can have the ability to kill your children. It’s a very scary and stressful disease and we just take every day as it comes. My kids are otherwise healthy and happy, and for that, I am thankful…I’m also grateful that they have each other on this very difficult journey and they don’t have to brave it alone…
I plan to post later in the week about some of the foods and meals my kids eat regularly, since I’m also often asked what exactly my kids eat.
I hope you found this info helpful. It’s important to me to raise awareness for this disease as well as educate myself further and teach my kids how to take care of their own needs in the years to come when I’ll have less control over it.