Side Effects of Anaphylaxis

[cho1973]

I just joined the board; I'm one of the growing tick bite meat allergy victims. My reactions qualify as severe – major gastrointestinal distress, chest tightness/difficulty breathing, rapid rise in heart rate & blood pressure, followed by a fairly severe drop in blood pressure, and ending with several hours of intense shivering/cold sensations which is probably shock related I am sure. Episodes last 20 minutes and if I don't lie down I come very close to losing consciousness unless I use the epi pen and my albuturol.

I sometimes get a very heavy and uncomfortable heart pounding sensation in my chest when I hike up steep hills. It stops as soon as I stop walking; there is no lingering sensation. If I breathe very deeply and very slowly it seems to reduce the discomfort. I've had a complete cardiac workup in the process of diagnosing the allergy including ECG, EKG, stress test, and even an electro physiology study. I'm 38 and go to the gym frequently and based on the workup no one suspects or believes there is anything wrong with my heart. I am beginning to wonder if, just if, it might be related to some sort of change in my reparatory system from the anaphylaxis and here's why: the sensation occurs more often AFTER I've had an attack, then, slowly reduces in frequency the further away from the date of the attack I get. I just figured this out after going 11 months without any trouble; my first walk up the hills in my neighborhood afterwards was tough. I am not at all familiar with asthma or other respiratory issues which is why I am asking.

[CMdeux]

It sure sounds as if it could be lingering cardionvascular effects from anaphylaxis.  Anaphylaxis can be protracted.  It wouldn't surprise me at all to learn that such a presentation of anaphylaxis might be more typical from a less usual trigger like alpha-Gal (the tick-meat allergen).

Be sure to find out more about anaphylaxis, too, though.  Unfortunately, it pays to gain some expertise of one's own on that score; many emergency room physicians may not recognize atypical presentation (ie-- without hives AND breathing problems), and even if they do recognize it, they may not understand it well enough to treat it properly.  (Not releasing you too soon, being prepared to offer additional supporting meds, etc.)

Have you been given a course of oral steroids by an ER physician in the wake of anaphylaxis?  If not, you might want your regular physician to write you a standing order that you can get filled if you need to use epinephrine.  Worth discussing, anyway.

I'm hoping that this is a totally bizarre question-- but-- you do know to go to the nearest ER once you've used epinephrine, right?  Anaphylaxis can return with a vengeance after it wears off in 20-40 minutes, and you need to be where you can get full-scale emergent care at that point. 

[cho1973]

I have not considered steroids at all - will check on that.

I've been to the ER twice: for the initial reaction (we thought I was having a heart attack), and for a very nasty one I had last winter right on top of the stomach flu. Frankly, I don't go in every time. The reaction(s) are predictable to the second, and, with my job I travel so getting to the "nearest" ER isn't always that easy. Don't take that as an attitude of invincibility please; it was pure hell for seven months for myself and my family while every doctor scratched their heads - I lost like 12 pounds and developed anxiety issues which I am still dealing with. It's something I will dialogue with my doctor over though now that you bring it up.

[CMdeux]

If you have frequent impairment in airways with reactions, and it sounds like you do-- you might also ask about getting a peak flow meter to monitor how you're doing in the wake of a major reaction.

Even though I'm a mom, I'm willing to concede that I'm not YOUR mom... and it means I'm biting my tongue.... I won't lecture you about needing to go to the ER after using epi, okay? 

But please talk to your doc about that.  Our own action plan has it pretty much set in stone that anaphylaxis = emergency room visit.  PERIOD.  Of course, we're also dealing with allergens that are traditionally very unpredictable (peanut and treenut), so it is possible that your doc feels that your management plan is fine as it is. 

Cardiovascular symptoms can kill in just a few seconds, though, and anytime I see someone reporting those, it makes my radar tingle because I know that people like that are (as a group) the ones at very high risk for fatality.  My own daughter is one of them, so I've got one of these teeshirts.  I know it seems ridiculous to go the emergency room when you feel more or less fine after epinephrine, but I've seen what a biphasic reaction looks like in full force-- terrifying and moving at the speed of light, basically.  PTSD moment, for sure, when that is your family member--  nobody wants to face that without help from people who can get someone intubated, get an IV in place for a volume resuscitation, and shock that person's heart in a hurry.   

[lakeswimr]

Ditto what CM said.  Do you have an allergist?  Food allergy reactions can and do change.  My son *always* had the same reactions for 4 years and then ever since then his reactions have been totally different!  You should not and can not count on reactions being always the same or on you surviving them without proper medical care.  If you do not yet have an allergist who specializes in food allergies I hope you get one.

Also, if you are having reactions that frequently does that mean you are accidentally eating meat products accidentally that often?  If so I would be very careful about what you eat.  Meat is not a top 8 allergen so it doesn't have to be listed on food labels.  It can be hidden behind ambiguous wording like, 'flavor' and 'flavoring' and 'natural flavors', etc.  The only way you can know if  a food is free of it is to contact companies and ask or to patronize vegetarian places (and even then I have heard some veggie food isn't fully vegge--I'm vegetarian myself, just btw.)

I'm very sorry you are dealing with this.  Please be careful and take care.  I recommend you read up on food allergies.

Editing out link and mention of other food allergy site at request of moderators. 

[cho1973]

Thanks for the info and support.

The doctor I see right now is one of the key researchers into this allergy @ the University of Virginia. I was thinking of also seeing a regular, clinical allergist and perhaps the issue of visiting the ER is impetus to do so. In my line of work, I don't often have access to one though and have endured/survived a couple of severe reactions completely on my own.

I have not had that many reactions since diagnosis, just one in 11 months. Before that, between May 2009 and February 2011 I had probably 6-7 severe and 3-4 minor ones. All of the severe ones were endured without the administration of any medications or first aid. By minor I mean that I became very stuffed up, my face got red and my head felt like it was going to pop off but that was it. It seems that if I take my Zyrtec and Singular that's as bad as the reactions tend to be.

A lot of this has been figuring out, as the previous poster intimated, where the beef products may be hidden. It was easy enough avoiding grilled meat but after I had a reaction from pancakes I realized that there were other prepared dishes that may have come in contact with beef juices. Now I avoid most grilled foods unless I feel assured the kitchen will be diligent, which means I also end up avoiding chicken and fish a lot of the time as well. The other difficult thing is, that, I can also react to dairy under the right conditions. Those conditions are related to the amount of dairy ingested as well as the status of my immune system. Last February, I had a glass of skim milk on the tale end of the flu and ended up calling 911 two hours later. On Christmas Eve I ingested a lot of soft cheese(s) and was ill that night as well. It's the fat molecule in the animal product(s) that is the problem, not the animal product itself. Some people with this allergy can eat lean mean such as venison or buffalo, and are fine. Some people with this allergy can't tolerate dairy at all, and, we're all aware of the fact that some people are just plain allergic to dairy for other reasons. I was encouraged to have some dairy daily; I have cream with my coffee and some hard cheese on sandwiches or with crackers several days a week.

In my travels, I have to deal with a lot of food variables. More and more often I am opting for a side salad and vegetables on this side rather than risking anything prepared on or near the grill.

I'll add that, during my two visits to the ER for this, neither ER physician considered allergic reactions. The first time I went I was told I had a panic attack, and the last time I was told I had gastrointestinal distress, even though I was laying there shaking like crazy due to post-reaction shock.

[lakeswimr]

It sounds like  you are a smart, proactive person and have been doing your best to deal with a difficult situation.  I can imagine travel and having to eat out makes this a million times more difficult!

It is good you are seeing a top doctor for this condition.  However, if he or she did not inform you of how to avoid beef that doctor may be giving you lots of great help, advice and information but not nearly enough.  I recommend reading up on food allergies.  I recommend seeing an allergist who is expert in food allergies (not all are) 

Editing out link and mention of other food allergy site at request of moderators.

Having a non-top 8 food to avoid makes things tricky, as you have found.  My child has many food allergies including dairy.  People with dairy allergies also usually avoid grilled foods for the reasons you stated.  Fried foods also are a risk.  I think you are smart to eat salads but even that could be a risk.  Salad dressings that have 'natural flavor' and croutons could both have beef.  I don't know if there is anyone avoiding beef on this board but the kids with food allergies board has people avoiding it who can give you good info on how to avoid it completely.  I *think* some vaccines have beef tallow so you would want to know that info, too.

Many/most with food allergies cook almost all our foods and eat out only after having done a lot of research including looking online for info, calling in advance, talking to the manager or chef at the restaurant and giving them a 'chef's card'.  Here is a link to one you can print out and use if you like.  It sounds like you already do a good job of quizzing restaurant staff about safety.

Editing out link to other food allergy site at request of moderators.

There is a long thread of people who died from food allergic reactions.  The most common thing I see in the stories of these people is that they did not use an epi pen and that they did not realize their reactions could get worse and that they had many prior reactions that self-resolved without the epi pen.  Past reactions unfortunately don't tell us what future reactions will be. 

Here is a sample emergency plan in case you don't have one already.

Editing out link to other food allergy site at request of moderators.

[CMdeux]

As a vaccine ingredient, "BSA" is something that people with alpha-Gal allergy might need to be aware of--
it's Bovine serum albumin.  It's used in protein characterization and analysis (as a standard) and also in tissue culture (which is how it can become a possible ingredient in vaccines).

It's a protein component, though, not a glycosylation product, which means that it should be okay for most people.  (Rather the way that refined oils "should" be okay for most people with seed storage protein allergy).

Another possible hazard present in some cell culture media is FCS-- fetal calf serum.  It's basically the same kind of thing as BSA, but less refined and a greater mixture of protein components.

[cho1973]

As a vaccine ingredient, "BSA" is something that people with alpha-Gal allergy might need to be aware of--
it's Bovine serum albumin.  It's used in protein characterization and analysis (as a standard) and also in tissue culture (which is how it can become a possible ingredient in vaccines).

It's a protein component, though, not a glycosylation product, which means that it should be okay for most people.  (Rather the way that refined oils "should" be okay for most people with seed storage protein allergy).

Another possible hazard present in some cell culture media is FCS-- fetal calf serum.  It's basically the same kind of thing as BSA, but less refined and a greater mixture of protein components.

As I sit hear and re-read your post above, I get chills up my spine. I had a full blown reaction today after making myself a protein shake with Whey Protein, which has bovine serum in it. I had my 8 year old son call my wife at work, then 911. I gave myself two .15 shots of epinephrine, 1 shot of albuterol, and lay on the floor writhing. By the time EMS arrived it was already passing but they stayed with me probably 30 minutes until I felt a lot better.

[lakeswimr]

I'm very sorry that happened to you.

I would see an allergist who specializes in food allergies asap!

A good % of reactions can be biphasic meaning that the person seems to recover fully and then anaphylaxis comes back again.  that's why it is recommended and important to go to the ER via ambulance and stay 4 + hours in case you have a biphasic reactions.  Biphasic reactions respond less well to the epi and are more likely to be fatal than initial reactions and can move very swiftly. 

As a vaccine ingredient, "BSA" is something that people with alpha-Gal allergy might need to be aware of--
it's Bovine serum albumin.  It's used in protein characterization and analysis (as a standard) and also in tissue culture (which is how it can become a possible ingredient in vaccines).

It's a protein component, though, not a glycosylation product, which means that it should be okay for most people.  (Rather the way that refined oils "should" be okay for most people with seed storage protein allergy).

Another possible hazard present in some cell culture media is FCS-- fetal calf serum.  It's basically the same kind of thing as BSA, but less refined and a greater mixture of protein components.

As I sit hear and re-read your post above, I get chills up my spine. I had a full blown reaction today after making myself a protein shake with Whey Protein, which has bovine serum in it. I had my 8 year old son call my wife at work, then 911. I gave myself two .15 shots of epinephrine, 1 shot of albuterol, and lay on the floor writhing. By the time EMS arrived it was already passing but they stayed with me probably 30 minutes until I felt a lot better.