I can understand not wanting to appear high maintenance but if you had, say, high blood pressure, you probably would not think twice about saying so in public.  Somehow food allergies get a bad rap.  I used to be so embarrassed to ask for things my child *needs* to stay safe and have come to be able to just state those things as matters of fact.  It is hard, though. 

You said your reactions start a certain way.  My son's reactions were always almost the exact same for 4 years and then since that time have been different every time for the next almost 8 years now.  So, I was caught very off guard and didn't realize he was having a reaction at first some of those times until things got pretty bad off since I had it in my head that my son's reactions are always the same.  His allergist said that reactions can and do change and it just depends on where the protein goes in the body once it is absorbed into the blood.  Once it is in the blood it can go anywhere and so can affect people in a variety of ways each time.  So, I would not trust that in the future you will have the early warnings you have had with itchiness.  That may or may not happen in the future.

Do you have a written emergency plan that tells you went to epi?  Here is a sample one in case you do not yet.

http://www.foodallergy.org/document.doc?id=234

If you are taking antibiotics those can cause chronic yeast infections.  Are you taking probiotics to counter the antibiotics?  If I don't take them after I have antibiotics I get various intestinal issues and tend toward yeast infections. 

Does your son have an allergist?  How as your son diagnosed with those foods?  Was your son having reactions to all of them?  I am not sure if you know but testing has an extremely high false positive rate.  Recent studies have found that 86% and in another study *90%* of people diagnosed as allergic to particular food based only on test results were NOT allergic to those foods!  Testing is a good way to help figure out what might be the cause of a reaction if there are a couple suspect foods.  Allergists have guidelines now that recommend against widespread testing because of the super high false positive rate.  If your child has not had a for sure reaction to all of those foods some could easily be false positives.  I hope so because that is a really long and difficult list of foods to avoid.  I am struck by you saying you are not sure of all of his allergens.  I recommend carry them on a card with you because otherwise you won't be able to label read when you shop.  I hear you that you make things from scratch but even basic ingredients can have cross contamination with things. 

I think it is, too-- at least if you know that something seems to cause problems, you know WHAT to look more closely at.


Hmm... is it just that particular SOURCE of that food?  All forms of it, or only some of them?

Things like that don't seem very important to people with only a SINGLE food allergy, but as you're probably well aware, there is a big quality-of-life difference in "I can't eat rice" versus "I can't eat rice from that one store because of how they keep it underneath {allergen-containing food} on the shelf, but all other rice seems to be fine."

A detailed food diary can pinpoint that kind of problem and identify patterns that are really almost random otherwise. 

  I think we have all been there with just feeling tired of feeling unwell all the time.  Dosing yourself repeatedly with cross-contamination is a bad, bad thing.

A single moment's stupidity is enough, too-- I just got a potent reminder this morning.  Always leaves me thinking-- stupid-stupid-stupid.  I got lucky and only got a single, very weird symptom (referred sudden dental pain from Eustachian/sinus swelling) for my trouble, but it could just as easily have been something else instead.  My mistake?  I ate something after not washing my hands well enough after flushing the dog's ears with something containing shellfish extracts.  Yup.  I washed em-- just not well enough, I guess.  Dumb of me.  I know better.  I just figured that it was too refined a source to matter THAT much.  Wrong.

I think doing your own elimination diet is worth it, regardless of doctors' advice. It's tough but it's worth it, believe me,and ultimately not such a big deal and may need to a great deal of healtfulness. Your needs may evolve but they sound complex enough that relying on tests and doctors is never going to truly get you to where you need to be, KWIM? I sympathize with not wanting to be a fuss. I have been there MANY times.

I had suggested an elimination diet in the first year I was having problems. But my doctor did not seem to think that would be valuable in my case. I was pretty desperate back then. After my early reactions, I would have smaller ones almost every time I ate something and that would go on for weeks. Eating was not enjoyable. I do try to avoid the things my son is also allergic to. His initial positives were sesame, soy, peanuts, tree nuts (all but two but I assume all). That was pretty easy for me. Added to the list since June -- wheat, corn, eggs and recently added -- potatoes, carrot, cantaloupe. Sadly there are others. I can't name them all off the top of my head. I basically know what he can eat, we travel with all of his food and we don't eat at restaurants. I gave up most processed foods at the beginning of the year and I think that helped me tremendously. I've been eating a pseudo paleo diet. This past issue was all me being stupid and not wanting to appear too high maintenance in front of a date. And I honestly thought the food would be fine. I know. Stupid. Stupid. Instead of appearing high maintenance he got to see my neck blow up.

My reactions always start with itchy strange places. Ears, hands, feet etc. So I know it's coming. And then I start feeling congested, I clear my throat, throat gets tight. I take two Benadryl strips. At that point one of two things happen. The itching subsides and I start feeling relatively normal again or things start going downhill fast. And at that point I will use the epi. Given that I now know an epi or two is not a guarantee of stopping a reaction, I will probably be more likely to use them in the future. I have had one super bad reaction where an epi was not administered correctly and I really thought that was it for me. I do not ever want to have that feeling again. I have two children and I need to be here for them.

I don't expect a holistic doctor is going to "cure" my allergy issues. And I am not willing to do anything super crazy or ingest anything potentially dangerous. My body has been through so much over the past several years. I now have chronic infections, I'm taking antibiotics to try to prevent them and I've taken three other drugs to try help keep my body in check. I've just had enough. I just want to be healthy.

Sesame is difficult.  My child has a sesame allergy (among others) and I have found that I have to contact every company to ask if their product contains or is on the same equipment as sesame.  My son had serious reactions from cross contamination.  Sesame can be listed as 'spice', 'natural flavor', 'flavoring' and more.  My son reacted to foods that didn't say any of these things and had sesame cross contamination.  So, we are very careful with sesame.  There is almost no safe bread he can eat.  There are many other high risk foods for those with sesame allergy.

I hear you on not wanting to use the epi pen.  It is the only thing that can stop a reaction that is going to progress from progressing.  Benadryl is for comfort only and has no life saving capabilities.  So, you can take it at the start of reactions but it isn't going to stop you from getting in a bad state.  Most anaphylaxis will self resolve so even without any medication people usually are fine even with anaphylaxis.  But unfortunately, sometimes without the epi pen people aren't fine.

I hope you have a good written emergency plan of when to epi.

Quote from: Allergynewbie on November 08, 2013, 11:40:42 AM
I have been under an allergist's care for about five years now. I went through about two years of testing -- RAST, skin and food challenges. And I've been tested for all auto immune diseases. Everything was negative, with the exception of the food challenges which were stopped as soon as I started to react. I am most definitely allergic to sesame. Despite the negatives, my allergist agrees with that. I have a strong sensitivity to soy. And I believe there are a handful of other things I am likely allergic to, but not to the same extreme as sesame. Yes, I carry epi-pens with me. And have used them a handful of times. However, when I feel a reaction coming on, I go to benadryl strips first. I know the epi-pen means a trip to the emergency room. And for various reasons, I would like to avoid that. If I can tell the reaction is going to be a strong one, I do use the epi-pen.

I am a little bit of a medical mystery. I've only been dealing with this for about 5 years. On the flip side, I have an 8-yr old son who since I've been having smaller reactions, tested positive for sesame, soy, and about 10 other things. He has anaphylaxis and eosinophilic esophagitis. I do think our issues are related. I also am beginning to wonder if I overproduce yeast. Given the list of issues I have, many seem to fall on the list of symptoms. I am considering seeing a holistic doctor.

Trust me, I've spent the last five years reading food labels, talking to my doctor, researching information. Unfortunately for me, what I'm allergic to is not cut and dry and as I'm sure we all know, accidents happen. Sesame is not one of the major allergens in the US, and I believe it can be simply labeled as "spices." Occasionally we ingest something we shouldn't have. Restaurants cross contaminate, don't take us seriously, or in my case last week, I simply and very stupidly didn't ask.

Appreciate you sharing your experiences.

What a pain not to know exactly what your triggers are. That would make me nuts and I am sure it drives you crazy. I am with you on the Epi-Pen and the ER. It's a huge pain and, I don't know about you, but I have a $150 copay AND I hate wasting insurance money. Even if I personally never have to pay a dime, I hate the idea of loading up when I don't really need the care. It's probably the primary reason I have never used my pen (until last month). I don't really know who has kids who can afford to sit in the ER for 4-6 hours after every reaction, honestly.

In terms of the holistic doctor, I am a really big proponent of seriously doing some elimination diets for stuff like this and just going with your own gut. I think you should go to a holistic doctor and see what they say and they can definitely help you make choices and make suggestions, but I think ultimately you will be calling the shots about what you put in your body and reading the signs of how it affects you. Before I ever developed true food allergies, I did a lot of elimination in my diet for various issues, including chronic yeast infections, minor rashes, etc. Personally, I had to give up grains in order to get rid of yeast issues, but I have known other women who have managed the issue by giving up sugar (I am fine with sugar in that regard) and doing other things. It was really just a case of "try this, try that" until I figured out how I best could feel healthy. I completely believe you that you may have gotten a yeast infection in the wake of anaphylaxis. I had the exact feeling of a yeast infection this past time, but I think it was more related to becoming extra sensitive to everything - soaps containing lanolin, etc. and that is what caused the infection, not so much that the anaphylaxis did, but who knows?

Have you thought about eliminating all the things your son has tested positive for, plus the most common allergens and see what you can reintroduce, just to see?

Also--noting: my ana reaction last year was to sesame.  It's such.a.pain.

Quote from: CMdeux on November 08, 2013, 01:09:19 PM
Hey-- it happens to us all.

Studies about this sort of thing indicate that even people who have a top-8 allergen can expect to experience an ingestion every few years.  Obviously that's an average, but the longest my DD's ever gone is about four years in between anaphylaxis events, and we're freakishly, over-the-top careful in a lot of ways.

Do be very very careful with an alt-med practitioner.  Most of them have NO real clue what they are playing with in patients like us.    That has occasionally led to some really, really bad outcomes-- including a fatality in Ireland within the past few years.   

For the record, it was an alternative practitoner (a holistic chiro) who told me to give DS peanut butter, because it was a "strong" food for him.  I didn't listen to him.  But he got into some on his own, and the rest as they say, is history. 

What I have found both times I've had to Epi myself (including last December) is that I have uterine cramping for several days afterward.

My menstrual cramps are always in my back--never my front. When I was in labor it was back labor--no front pain. The only time I've experienced that front low pain was after a miscarriage and after anaphylaxis.

No fun.

Hey-- it happens to us all.

Studies about this sort of thing indicate that even people who have a top-8 allergen can expect to experience an ingestion every few years.  Obviously that's an average, but the longest my DD's ever gone is about four years in between anaphylaxis events, and we're freakishly, over-the-top careful in a lot of ways.

Do be very very careful with an alt-med practitioner.  Most of them have NO real clue what they are playing with in patients like us.    That has occasionally led to some really, really bad outcomes-- including a fatality in Ireland within the past few years.   

I have been under an allergist's care for about five years now. I went through about two years of testing -- RAST, skin and food challenges. And I've been tested for all auto immune diseases. Everything was negative, with the exception of the food challenges which were stopped as soon as I started to react. I am most definitely allergic to sesame. Despite the negatives, my allergist agrees with that. I have a strong sensitivity to soy. And I believe there are a handful of other things I am likely allergic to, but not to the same extreme as sesame. Yes, I carry epi-pens with me. And have used them a handful of times. However, when I feel a reaction coming on, I go to benadryl strips first. I know the epi-pen means a trip to the emergency room. And for various reasons, I would like to avoid that. If I can tell the reaction is going to be a strong one, I do use the epi-pen.

I am a little bit of a medical mystery. I've only been dealing with this for about 5 years. On the flip side, I have an 8-yr old son who since I've been having smaller reactions, tested positive for sesame, soy, and about 10 other things. He has anaphylaxis and eosinophilic esophagitis. I do think our issues are related. I also am beginning to wonder if I overproduce yeast. Given the list of issues I have, many seem to fall on the list of symptoms. I am considering seeing a holistic doctor.

Trust me, I've spent the last five years reading food labels, talking to my doctor, researching information. Unfortunately for me, what I'm allergic to is not cut and dry and as I'm sure we all know, accidents happen. Sesame is not one of the major allergens in the US, and I believe it can be simply labeled as "spices." Occasionally we ingest something we shouldn't have. Restaurants cross contaminate, don't take us seriously, or in my case last week, I simply and very stupidly didn't ask.

Appreciate you sharing your experiences.

I have not heard of a possible connection.

What are your allergens?  Do you have epi pens and a written emergency plan?  You may already know this but Benadryl and other antihistamines have no power to stop a reaction that is going to progress to life threatening states from progressing.  Only the epi pen can halt a reaction from progressing.  Once a reaction starts there is no way to know how far it will progress.  If you have a reaction that is systemic or anything that causes swelling around your mouth/throat most all plans will call for giving the epi and calling 911 for a 4 or 6 + hour stay in the ER. 

I hope you have a good written plan and a good allergist.  Stay safe!

I think this would be the last thing on my mind if I had just had anaphylaxis and was not quite sure what caused it and how to prevent it in the future? Maybe you would be better served by figuring out how to eliminate your allergens first? I have had every kind of wacky thing happen after anaphylaxis (including what you seem to be describing) but I don't really personally care how it's related or a doctor sees it as being related, I just want the anaphylaxis to stop and the only way for that to happen is to read labels and work on elimination. Doctors are mostly going to be interested in prevention of the reaction and not so concerned with how it plays out, right? That said, yes I had a similar thing and I chalked it up to a new sensitivity to some products I was using that were enhanced after the reaction. It felt like yeast, but wasn't, and went away when I discontinued using the products. Hope that helps 

I don't hear a lot of information coming out about the after effects of a reaction. I have noticed mine cause complete chaos in my body i'm assuming because it's a hormonal reaction. Stupid me ate something last week and did not ask what was in it. Bad reaction, but not my worst. I was able to handle with Benadryl and another prescription med. I really didn't think it was the one thing I'm allergic to most as I was able to get it under control myself, but as it turns out it really was. I must have just gotten a tiny bit of it. Anyway, normally after I have a reaction, I can expect a yeast infection. Tends to be the way my body works. I saw my gyn as I have quite a severe rash and she didn't seem to thing there was a connection, and she's not convinced it's yeast given how bad it is. But I've found a lot of medical professionals don't understand the aftermath of anaphylaxis. Maybe she is right, but given how strange my body is and how it reacts to things, I have to believe whatever it is, is a direct result of the reaction. I have perioral dermatitis on my face and I know that can appear elsewhere. Wondering if that's it. Have any other women experienced these unfortunate side effects? I am on diflucan and she did a culture, but that may not be back until next week. I've done a lot of searched online, but I am just not finding the right information out htere. Thanks for your thoughts.