New to Allergies

[Lisa]

I am normally pretty good at taking charge of medical issues related to my kids but I'm so lost with this one, so any help (even just where to start) would be appreciated.
Within the last 2-3 years my 21 yr old daughter has had some severe(I think) reactions to foods.  It first started with a tingly, itchy tongue after eating a walnut.  We went to an allergist she was sick tested and came back allergic to dairy and tree pollen.  The Dr. told us to ignore the results, that if her body was showing allergic signs to nuts we should consider her allergic to nuts and gave us an epi pen.   I took her to our GP and he did a blood test in which she showed positive to dairy only.  He also said if she was having reactions to nuts then ignore the test results and treat it like she is allergic to nuts, gave us another epi-pen.   Dairy only seems to cause symptoms more related to food intolerance than allergic.  A couple times she has inadvertently eaten something that has caused reactions that we have possibly narrowed down to sesame seeds, nutmeg, and peanut butter and something  in Pizza Hut wings sauce. 
The confusing part – her reactions are an itchy tongue, feeling like something is caught in her throat and a feeling like she can't catch her breath, she has never had hives or any kind of swelling.  She has taken the epi pen and we went to the hospital two different times.   One time they treated her like she had an allergic reaction, the other time, they were more dismissive because she didn't have swelling or hives and said it wasn't allergies but possibly just a virus.  (I made them treat her as though it were allergies).
My questions – is she having a reaction that requires an epi pen if there is no swelling?  Are we over reacting?   She was trying to train for a 10K but after having a hard time breathing after a few runs she was diagnosed with exercised induced asthma.  And most recently she was having a hard time just catching her breath and feeling tired all the time.  The Dr. gave her an inhaler and is doing some tests on her lung capacity.  Now I'm wondering if this is all connected.  I saw something about the exercise induced food allergy and pollen food allergy syndrome.  Anyone have experience with these?  Is a nutritionist or dietician a good idea?
Sorry for the lengthy first post and again thanks for any help or suggestions.

[rebekahc]

Hi and welcome!   I'm sorry you needed to find us, though.

I'll try to address all your points, hope I don't miss anything.

1.  Your doctors are right - reaction history always trumps test results.  In general positive test results are only about 50% accurate and negative results are about 90% accurate.  It may be that once your DD successfully avoids her true allergen(s), her body will calm down and the seemingly random reactions to things she's not allergic to will stop.

2.  No, you do not need hives or swelling for it to be an allergic reaction.  We've had the same thing happen to us in the ER.  Here's a link to the plain-English Anaphylaxis Grading Chart that may help you decipher her symptoms.  It's also a good idea to get an emergency action plan from your doctor.  Once you know exactly when to epi, it takes the pressure off having to make a judgment call in the heat of the moment.  Our simple to remember rule-of-thumb is two body systems involved = epi.  Mouth itching and difficulty breathing would be two.  And, for what it's worth, the something stuck in the throat feeling is swelling of the throat or vocal chords.

3.  It seems to me that it would be odd to suddenly develop asthma as an adult.  I have to wonder if she's having environmental exposure to whatever it is she's allergic to that's causing the asthma symptoms.

4.  Our experience with a nutritionist/dietitian was disappointing.  They're not trained in food allergies, so the one we saw was less than helpful.  She could only tell us what DS needed nutritionally (carbs, protein, fat, nutrients, etc.) but not how to achieve that while avoiding allergens.

Once you can narrow down exactly what she's reacting to, it will get easier.   

[CMdeux]

Pollen-food-allergy syndrome is also (more commonly) called Oral Allergy Syndrome.

Basically, the immune system 'sees' some food proteins as being pollen proteins instead.


The most common OAS connections/cross-reactivity are:

birch pollen --- apple, pear, peach, plum, cherries, etc.
ragweed-- melons, bananas, and a few other random things
grass-- hazelnut (and more rarely, peanut)

In most people-- such reactions are oral only, and merely uncomfortable or annoying.  Generally comprised of itching, maybe even other odd sensations in the mouth and throat.   They may only occur when the pollen is in season, or in those more severely effected, all year long.  With the nut-grass cross reactivity, though-- it is SUPER important to have a really top notch food allergy specialist help you tease it apart, because nut allergy is SO dangerous for so many people.


Cooking raw fruits/veggies that trigger the response mostly eliminates the reaction because of how heat-sensitive the culprit proteins are.

HOWEVER... any oral symptoms that result in swelling are more serious, regardless of the cause.    It's also true that some people have a predisposition to systemic allergic reactions, and in those individuals (and there's no great way to know who they are until you have reaction history that says you're one of them) OAS is dangerous.

Glad that your DD has epipens and isn't afraid to use them.   

[twinturbo]

Hi Lisa,

I have pollen-food that presents in anaphylaxis that was adult onset. I also train in high-intensity activities although I'm not a marathoner.

That allergist that gave you the epinephrine and instructed you to trust reaction history over the test results--that's a keeper. A truly useful allergist. She should be able to return to high intensity activity but for now I'd concentrate on keeping the asthma well controlled and going through a few oral challenges to weed out what the actual allergens are. She may have to make a little extra effort to avoid triggers before exercising and change activities that are closer to emergency care until she establishes a baseline between triggers of her anaphylactic reactions and asthma.

In the meantime for practical purposes I carry an Auvi-q epinephrine auto-injector for its flatter profile to store in my sports clothing. I also only use a smart phone for my music in case I need it for a phone in or phone out.

Allergies-Asthma-Atopy are interrelated.

I need to be careful with contextualizing what I say next because I have no data to back it up. My current allergist whom I share with someone here believes in his experience with his patients regarding immunotherapy treatment for pollens that it does resolve OAS symptoms. He's given me the option of starting a pollen immunotherapy program to reduce my atypically systemic OAS if we find out that it has not self resolved. Since I'm at a higher risk I may begin that next year.

[jschwab]

3.  It seems to me that it would be odd to suddenly develop asthma as an adult.  I have to wonder if she's having environmental exposure to whatever it is she's allergic to that's causing the asthma symptoms.

This is actually not unusual at all and it's even being flagged for more awareness in seniors who suddenly experience breathing problems (as opposed to the usual suspects). I myself developed asthma symptoms in my 30's. I had symptoms, mostly wheezing, shallow breath and chest pain, and an inhaler - which I used frequently - for about a year and a half. I changed my diet and fixed some environmental things in the house and the symptoms disappeared (this was before I had true allergies). I think adult onset asthma is actually pretty common, especially exercise induced asthma.

For the OP, my food allergy symptoms for years did not involve hives or swelling except in my throat. My most recent allergic reaction that put me in the ER only involved my airways only but it was, by far, the worst reaction I ever had. My next reaction involved hives but that was a completely new phenomenon to me. I spent years dismissing my allergies because I had no other symptoms. It took my throat completely closing off one time to really take it seriously, though.

[CMdeux]

That reminds me!

Connecting "FA Action Plan" with "Asthma Action Plan"

Lisa, both you and jschwab should probably take a look at that thread-- there are some terrific resources which are highly specific for evaluating that kind of reaction in particular.


Also worth noting that a disproportionate number of fatal (or near-fatal) reactions tend to be NON-CUTANEOUS (that is, no skin symptoms).  It's not clear if they are just not recognized as soon, or if they are mismanaged as a result, or if there is something inherently more dangerous about that kind of reaction to begin with, but it is worth bearing in mind either way.

It also seems to be true (though I'm basing this on anecdote from this community's reports over the years) that teens and adults tend to LOSE those cutaneous symptoms over time-- the majority of the time teens and adults have NOT got hives with an allergic reaction, in other words.  My DD definitely started out always manifesting hives during reactions, but they diminished and she very rarely gets them now.  Only two of her four grade IV-V reactions have featured them-- the one at 11mo and the one at 2yo.  The one at 7yo did not, and neither did the one at 11yo.  She's had a number of grade III-IV reactions that didn't, either.

Her reactions have gotten MORE asthma-like with age.

Mine are usually asthma/spaciness/gastrointestinal, too.

[jschwab]

That reminds me!

Connecting "FA Action Plan" with "Asthma Action Plan"

Lisa, both you and jschwab should probably take a look at that thread-- there are some terrific resources which are highly specific for evaluating that kind of reaction in particular.


Also worth noting that a disproportionate number of fatal (or near-fatal) reactions tend to be NON-CUTANEOUS (that is, no skin symptoms).  It's not clear if they are just not recognized as soon, or if they are mismanaged as a result, or if there is something inherently more dangerous about that kind of reaction to begin with, but it is worth bearing in mind either way.

It also seems to be true (though I'm basing this on anecdote from this community's reports over the years) that teens and adults tend to LOSE those cutaneous symptoms over time-- the majority of the time teens and adults have NOT got hives with an allergic reaction, in other words.  My DD definitely started out always manifesting hives during reactions, but they diminished and she very rarely gets them now.  Only two of her four grade IV-V reactions have featured them-- the one at 11mo and the one at 2yo.  The one at 7yo did not, and neither did the one at 11yo.  She's had a number of grade III-IV reactions that didn't, either.

Her reactions have gotten MORE asthma-like with age.

Mine are usually asthma/spaciness/gastrointestinal, too.

Yes, I just read about that thing with more fatal reactions being noncutaneous. When I did have a cutaneous reaction last month, it was coupled with a lot less airway constriction than all of the other reactions I've had. It's funny, though, because way back in the early aughts when I had asthma symptoms they felt nothing like my anaphylaxis reactions, although I could see how they would look and feel the same based on descriptions I've heard of bad asthma attacks. It's been a long time but what I remember was shallow breathing, wheeziness (but no windsucking going on) and chest pain and tightness. Every food allergic reaction I've had has been  a combination of nausea, faintness/spaciness, constricted throat/tongue swelling and inability to breathe, and the doom feeling. This is, incidentally, why I ascribed my recent reactions while walking over tree nuts to allergies, not asthma - because it involved some serious gastro involvement.

Can you say more about that grading system for reactions? I have never seen that.

[CMdeux]

It's basically just using the same designations as in the plain-language Anaphylaxis Grading Chart (originally from a Pediatrics article re: Anaphylaxis)--

I like that it breaks out symptoms by affected system and then grades them on severity-- it makes it FAR clearer that some things are much more extreme than others, even though it might not seem that way at first.  Some symptoms are related to others because they are milder versions of things impacting the same system.  Itching, for example, versus widespread hives. 

I think that where this gets tricky is that "asthma" is a symptom, basically-- the only question is whether it is a LOCALIZED one (from an inhaled allergen or other trigger) or a generalized/systemic one (illness, systemic allergic reaction).  That's the exact same distinction between a localized skin reaction to something you've been in CONTACT with at the site of irritation, versus hives distributed in locations where you have NOT had contact with an allergen. 

At some point, the distinction between "asthma or allergy" doesn't even matter-- you just treat what is presenting.  Assume local first unless you have a good reason not to, and if you don't get a good response to rescue meds on that basis, move to more aggressive treatment that crosses into treating "systemic/generalized" triggers.

My DD has had systemic reactions that were truly indistinguishable from asthma-- with one VERY important difference:  they don't respond to rescue inhalers.  Scary, no?

[jschwab]

I think that where this gets tricky is that "asthma" is a symptom, basically-- the only question is whether it is a LOCALIZED one (from an inhaled allergen or other trigger) or a generalized/systemic one (illness, systemic allergic reaction).  That's the exact same distinction between a localized skin reaction to something you've been in CONTACT with at the site of irritation, versus hives distributed in locations where you have NOT had contact with an allergen. 

At some point, the distinction between "asthma or allergy" doesn't even matter-- you just treat what is presenting.  Assume local first unless you have a good reason not to, and if you don't get a good response to rescue meds on that basis, move to more aggressive treatment that crosses into treating "systemic/generalized" triggers.

My DD has had systemic reactions that were truly indistinguishable from asthma-- with one VERY important difference:  they don't respond to rescue inhalers.  Scary, no?

Yeah, I had never heard of that and it's SCARY. I really had not hear about the issues involving co-presentation of asthma and anaphylaxis in the same person before you guys mentioned it. Very scary for parents.

[CMdeux]

Well, and most of the adults on the forum have experienced one of those at least once, too-- it is very disorienting, because you wind up second-guessing yourself after the fact no matter what you do about it in the moment.

We've specifically talked to our allergist about those reactions, in fact-- how to handle them (as distinct from asthma--er, or what we THINK is asthma, anyway).

[lakeswimr]

It sounds like you might have some yet undiagnosed food allergies.  I would want the allergist do to food challenges in the office or hospital to narrow down the cause of the mystery reeactions.  You can't avoid what you are not sure you need to avoid.  Do you know that sesame does not have to be listed on labels and can be in foods?  It can hide as 'spice' or 'natural flavor' or 'favoring' or other names as well.  You have to call companies to ask in order to know.  My son had reactions to foods that were cross contaminated with sesame but which had labels that read as safe.  So, I call or email companies before getting foods or eating out with DS. 

It is not unusual for ER staff to not know that much about food allergies, unfortunately.  Do you have an emergency plan that clearly tells you when to epi? 

As for milk--testing alone can't diagnose a food allergy because it has a very high false positive rate and it also can have false negatives, too.  Has your daughter ever had a for sure reaction to milk?  What happened?