Quote from: SwayGirl on August 15, 2012, 11:14:04 PM
But as hard as this has been for me to get a grip on, what keeps hitting me over and over is how much easier this is than if it were my son. I'm pretty sure, if he was having little reactions to the thought of a whiff of a tree nut in Target or the grocery store, like I kept having, I would have either (a) already had a complete nervous breakdown or (b) tucked us both in bed, pulled up the covers, duct-taped the door closed, and never left the house. 

I am nothing less than dazzled by the sheer competence and get-on-with-it attitude of all the moms dealing with this. You all are the rock stars here.

Swaygirl

so true.

Quote from: CMdeux on August 14, 2012, 01:05:57 PM
YOU rock!!

There is nothing more awesome than a positive example for others as they learn how to live with a life-threatening food allergy.  You're living proof that life can still go on-- and that it really doesn't take forever to figure things out (though it can sure feel that way in the beginning).

It is wonderful that you've figured out work-arounds that allow you to feel safe and confident.   

Aww, thanks!  I appreciate the kind words. I still have soooo much to learn when it comes to living with FA, but I'm glad if I can offer any comfort to someone who is reeling from a first reaction/diagnosis and came here to figure out what to do next. That was me about 5 minutes ago, it seems. I'm glad to be on the other side of the very steep initial learning curve, and I hope I can help someone else the way the many thoughtful posters on this site helped me.

But as hard as this has been for me to get a grip on, what keeps hitting me over and over is how much easier this is than if it were my son. I'm pretty sure, if he was having little reactions to the thought of a whiff of a tree nut in Target or the grocery store, like I kept having, I would have either (a) already had a complete nervous breakdown or (b) tucked us both in bed, pulled up the covers, duct-taped the door closed, and never left the house. 

I am nothing less than dazzled by the sheer competence and get-on-with-it attitude of all the moms dealing with this. You all are the rock stars here.

Swaygirl

YOU rock!!

There is nothing more awesome than a positive example for others as they learn how to live with a life-threatening food allergy.  You're living proof that life can still go on-- and that it really doesn't take forever to figure things out (though it can sure feel that way in the beginning).

It is wonderful that you've figured out work-arounds that allow you to feel safe and confident.   

Quote from: SweetandSour on July 26, 2012, 03:17:54 PM
I feel so bad that I missed this thread until now. I was diagnosed in adulthood,and would be happy to answer any questions you may have while you and your dh adjust to it. Please feel free.to message me.

Thanks so much! I appreciate the offer and I'm sure I'll take you up on it. THere's so much I still don't know about all this.

Swaygirl

Hi everybody! I havent posted in a while. Got super-busy in RL with a big move to a new house, and all that entails. But I wanted to tie up loose ends on this thread for future readers. I hate when I stumble across a thread that seems related to what I need to know, and then questions never get answered and I'm dying to know how it turned out!  Anyway, my situation has shaken out like this:

(1) Yes, I'm ana to tree nuts. 
(2) Yes, allergic to strawberries (no indication it's anaphylactic, but not sure how I'd know until I know, you know?).
(3) Eggs were possibly a red herring, or possibly an intolerance. Doctor wants to do a challenge in 6 months. For now, I seem to tolerate egg in well-baked items, but the thought of something like scrambled eggs turns my stomach, so haven't even attempted that yet. Turned out the angel food cake was definitely made on shared equipment and had a TN cross-contamination warning on the label.
(4) Still had some mystery reactions and was suspicious of sunflower or sesame. Skin test was neg for sunflower, minor pos for sesame. However, RAST for both was negative according to DR. However yet again, I do seem to react to sunflower in things like chips that are supposedly safe for TN but fried in SF oil, so just avoiding for now. After much trial and error, I haven't found any store-bought bread that is ok for me (except King's Hawaaian rolls, which makes my son happy. He loves them--they are so sweet it's like a danish!). So I've been baking my own, and that's helped alot with minor mystery reactions.

Generally, life seems to have calmed down considerably, and after initially feeling like there was nothing left I could eat that I WANTED to eat, I've started to build a list of safe foods, figured out how to plan ahead to have some food ready to eat so that I don't make risky choices and/or starve, and just feel like I have a better handle on things. (Although a trip to visit relatives this week has thrown me for a loop--that's a whole other story!)

All that said, I had to use my epi for the first time about a week ago. Won't bore you with the details, as this post is epic already, but I'll just say this: Although I was super-irritated that I had a reaction after feeling so good for so long (and thus feeling like I was back on the react-to-everything roller coaster afterward), I was ultimately really glad it happened, because I was fine in the end and I can leave "fear of the epi" behind me. The shot itself was nothing. I mean, I literally didn't even feel it. Not even a pinch. And I felt better right away as everyone said would happen, and I didn't feel any bad side effects of the med. I didn't realize I was worried about that until it didn't happen. Just fear of the unknown, I guess. But now I know I will not hesitate to use the epi when I need it. That makes me feel much more in control, which is huge.

Thank you to everyone on this board for taking the time to educate newbies like me, calming fears and answering any and all questions with patience and good humor. I hope, as I learn more about life with FA, I will be able to return the favor some day. You guys rock!

Swaygirl

I feel so bad that I missed this thread until now. I was diagnosed in adulthood,and would be happy to answer any questions you may have while you and your dh adjust to it. Please feel free.to message me.

Many adults find that they react to MANY more things than they are actually allergic to by virtue of having their immune system so amped up all the time from exposure to a true allergen.  It's a little hard to explain how that works, but it's basically like filling up a coffee cup-- once you get VERY close to the rim, even a few drops can cause an overflow (a reaction).  If the cup were more empty, then that would never in a million years have happened.  KWIM?

I had lots of GI reactions to peanuts over the past 15 years or thereabouts, finally diagnosed when I had an ana reaction about 7 years ago.  My skin tests showed me to be allergic to lots of things besides peanuts, though I only reacted to peanuts and cumin. 

I avoided these foods, including trace amounts, then a couple of years ago, I tested negative to peanuts and also was neg to most other foods.   My allergist told me that with adult onset, if you scrupulously avoid your allergen, your immune system can forget that your allergen is the enemy....and as my allergy cup wasn't full, my other allergies were so much better, even environmental!   

He told me to assume I'm still allergic until I have a peanut challenge.  Because of lousy health insurance, I just avoid peanuts (but I do eat 'may contain) and have not had a challenge.  However last November, I had a reaction from a food in an Asian restaurant (a bite of a friend's appetizer - I didn't check ingredients).  I'm guessing I'm still allergic to peanuts - but def much better than in the past.  There is hope!

Yes to everything folks have said. I will add this:

I have sulfite issues with wine. I only drink wine not made in the US (All wines naturally have sulfites but US makers add more) and only red wines with the occasional champagne. Whites have more sulfites than reds. I have had anaphylactoid reactions from wine. And maybe one anaphylactic one, though those are rare, as this type of allergy is not a true food allergy. It's a chemical one. But the flushing and feeling like I was going to pass out--wow.

I have adult onset allergies. And while CM may have a point about so many developing at one being rare, it happened with me. Shellfish and sesame the same year.

My son is allergic to peanut btw. And I had a chamomile allergy prior. Also sage.

You may have an almond allergy. You may have a strawberry allergy, though it is rare.

But you will need to start thinking about where food is processed and the ingredients that you don't see on the label. The cereal: is it processed on the same equipment as egg-containing cereals?  Post makes that cereal. I don't know about their labeling. I do k ow General Mills labels for shared equipment. The same with that bun you ate. I would think easy cross contamination. (I use "cross contact" in restaurants--it makes them less defensive.)

With my sesame allergy I pretty much do not eat bread in restaurants. Because by law sesame doesn't have to be listed as an ingredient (it's not a top 8 allergen). But cross contanination tends to make me react.

For you this is important:  by law shared equipment doesn't have to be listed for even the top 8, including egg and treenuts.


We don't deal with egg, but the people here who do have to have a whole different set of criteria for asking questions than those dealing with just peanuts or just treenuts.

Also--let it sink in that no one can determine something is safe for you other than you.

One more thing--alcohol can make a reaction bigger and worse.

Oh one more freaky kind of thing--there are wines that are fined with egg or dairy. I don't know much about that and we used to have info at our old place.  don't know if we have it here.

I would hAve (on separate days) in office food challenges to almonds and strawberries before too long.


Welcome! 

You go so many good replies already and you are asking really good questions.

A few things that stood out to me.  The reaction you described as 'not that big' where you have various parts of your body reacting and some minor breathing difficulty is considered very serious and all plans i have ever seen would call for giving the epi pen for those symptoms. What you should know is that most anaphylaxis self-resolves but for the times it isn't going to self-resolve the epi is the only thing that is going to be able to save someone's life.  The sooner it is given the more effective it is.  Most fatalities happen in people who delay the epi beyond 20 or 30 min and giving it much sooner than that is optimal.  We divide reactions based on whether they are local or systemic.  A local reaction would be if my son got an allergen on his arm and some hives where it touched him.  A systemic reaction would be anything that affects multiple parts of my son's body.  Also, anything that involves any itchiness or swelling of the mouth, throat or for many, the fact will get the epi pen because swelling in that area can continue and block breathing. 

Once a reaction is systemic no one knows how far it will progress.  It is likely going to self resolve as your serious reactions have so far but you can't count on that.  If it isn't going to self resolve the epi is what you need and you need it asap.  Waiting and seeing is very dangerous.

Your allergist should give you a clear, written plan and the fact that it seems you don't have one is a red flag.  I'd call asap Monday and ask for one.  You can use this plan for now and have a doctor sign it.

http://www.foodallergy.org/files/FAAP.pdf

I'm wondering if you have been eating wheat with no problems.

I recommend you stop going out to eat until you know what you are allergic to so you can avoid it. Also, when you do know you can make up chef's cards that list your allergen(s) and also explain that your food needs to be prepared on a clean surface with all clean utensils that have been washed in hot, soapy water and haven't touched any allergens.  I'd be very picky about where and what I eat.  It stinks because you are not used to the restrictions and you are an adult but you will find a lot of places out there that should work for you once you know what to avoid.

I also wondered about sulfites because of the wine.   People can be allergic to them and they are in bread, wine, maybe angel food cake, etc. 

I would want to do an in office food challenge for anything you are not 100% certain is an allergen. From what you wrote I wasn't clear why you are so sure about nuts.  Egg does seem very likely but there is a small chance it wasn't egg and was something else from what I can see.

YOu are doing a great job investigating this and learning a lot very quickly!

Quote from: YouKnowWho on June 15, 2012, 07:19:06 AM
Wine when I am on histamine overdrive, stressed or post antihistamines will make me feel like I am on another planet. 

Really?! This is very interesting. I've had some funny reactions to wine in the last few years--flushing, suddenly very hot, after one a sip or two. I had been speculating (since the cake reaction) that egg whites used in "fining" might be the culprit, but maybe it's something related to histamine levels. This seemed even faster than those other reactions, though--almost instantaneous--which is why I thought it might be a coincidence. Also, it was way more intense than the "flushing" type stuff I've had before. It's that darned "allergy cup" I keep hearing about, I guess. I was suspicious of the brewing room because I do seem rather susceptible to airborne sort of contact, and seem to have respiratory symptoms more than other body systems. Oddly, I don't often get hives. I do get itching, sometimes very intense, but not usually hives. (When I have had hives, it's been on my palms or the soles of my feet.)

Quote from: YouKnowWho on June 15, 2012, 07:19:06 AM
If eggs come back negative on the bloodwork, I would ask for an in office food challenge before declaring them a non-issue.  I say this for two reasons.  One, you might be second guessing yourself at this point - I'm guessing this whole situation is overwhelming at this point.  (Again keep in mind that size of wheals really has little coorelation of "how allergic" you might be, so just because it was smaller than almond doesn't mean that almond would be more of a reaction for you.  The same goes for the RAST test).  Two - challenging them in the office with a possible reaction may give you a chance to speak with your dr about action plans, etc. 

Hang in there - I know it's a roller coaster but so far you are rocking it!

Thanks for this guidance. I will do that. I'll talk to him about it when I get the bloodwork back. And thanks for the words of encouragement. I'm not so sure I'm rocking it yet--more like it's rocking me!--but I'm working on it!

Oh, by the way, you asked about gluten earlier. I can see that this would seem really suggestive of a gluten issue. I know I don't have Celiac, at least, because I have to have yearly colonoscopies after an upper/lower GI found, rather by accident, a scary polyp close to becoming cancerous (and apparently it's a type that is nearly always fatal when it happens in people in their 30s). I'd been having gastro issues, including major pain when I ate, which made my doctors think Celiac or Crohn's since I was a woman in my 30s, but testing showed no evidence of Celiac (on bloodwork or on the colonoscopies), so I think I'm clear on that front. Skin test was negative this week, also, for wheat. I wonder now if that gastro pain & symptoms were the first signs of the FA. That was the start of many physical symptoms for me but no one recognized them as possibly FA related.

Quote from: CMdeux on June 14, 2012, 12:29:38 PM

most "almond flavoring" isn't almond-derived.  It's cheaper, apparently, to extract it from apricot/peach pits using some industrial process.  That's why so many almond flavorings do NOT list "tree nut" on the label.  Of course, you'll have to call to verify that this is so, but a lot of the time it's the case.  "Almond" scent/flavor isn't always.

Oh, this is interesting. I'm sure you're right, it's an artificial additive.

Quote from: CMdeux on June 14, 2012, 12:29:38 PM
Tests are just.... tests.

Seriously-- Angel Food cake is, like, once of the most amazingly concentrated sources of egg allergens that I can envision, short of meringue.  <shudder>

Yes, I agree. I'm certainly going to follow what my body is telling me, as opposed to a test. I'm definitely avoiding all egg, reading ingrediant lists and everything. I've been doing that ever since the angel food cake incident. Actually, I was wondering if that affects the blood test? Because I've been pretty darn vigilent, so the only egg in my system when I had the blood test would be the bit from the skin test an hour or so before. Not really sure how the blood test works, I guess.

But I think the nut thing is real, unfortunately, not just a false positive. I had a scary situation yesterday after eating a sandwich made on a bun I thought was safe (and maybe was...), but unthinkingly I toasted it in the toaster oven, which had not been cleaned out since the nut diagnosis, and definitely had residue and crumbs from the normal bread we have eaten for years--chock full of nuts, seeds, all manner of suspect bits. I absolutely, positively should have Epi'd, and I'm so upset I didn't. Strangely, by coincidence I was alone again, and when the reaction started I thought, Oh, no...I better get the Epi from my purse (which was across the room). But then I got so sleepy, and I couldn't get up off the couch to get it. Just sort of fell asleep...it really didn't seem like "passing out" but like drifting off to sleep, then woke up soon after (seconds, minutes...not sure). I was really freaked out--thankfully DH came home very soon after.

But STILL I didn't use the Epi. Kept saying I would wait and see. I don't think I was thinking clearly. But I was supposed to take my son and 3 friends to see a movie, and it was kind of a big deal, they'd been looking forward to it all week, and I didn't want to let the kids down. This seems, in retrospect, really idiotic. I am so mad at myself for not taking more care. If it were my son, I would not have hesitated to use the Epi. I don't know why I keep taking risks with myself when I absolutely know better.

I do think part of it is that I am, I realize now, kind of scared of the Epi. Not so much the needle, just...I guess the effects of the medication, the chain reaction that follows, with ER, etc. Maybe it will make it real? I don't know, but I am not normally a fearful person--fairly action oriented, really. Perhaps that's the whole deal with the food allergies:  It is a big smack-in-the-face reminder that I have no control over it. Can't wish it away, or pretend this isn't happening. Better put on my big girl panties and deal with it, as they say. I realize I need to be as vigilant with me as I would be with my son. I would NEVER gamble with his health and life the way I realize I have been with mine.

Once again, I am grateful for this forum and the awesome support and answers I've found here. Thanks!

Quote from: CMdeux on June 14, 2012, 12:29:38 PM
Keeping my fingers crossed that you'll start feeling better (and safer!!) soon.

Thank you. Me too!

Swaygirl

Wine when I am on histamine overdrive, stressed or post antihistamines will make me feel like I am on another planet. 

If eggs come back negative on the bloodwork, I would ask for an in office food challenge before declaring them a non-issue.  I say this for two reasons.  One, you might be second guessing yourself at this point - I'm guessing this whole situation is overwhelming at this point.  (Again keep in mind that size of wheals really has little coorelation of "how allergic" you might be, so just because it was smaller than almond doesn't mean that almond would be more of a reaction for you.  The same goes for the RAST test).  Two - challenging them in the office with a possible reaction may give you a chance to speak with your dr about action plans, etc. 

Hang in there - I know it's a roller coaster but so far you are rocking it!

Tests are just.... tests.

Seriously-- Angel Food cake is, like, once of the most amazingly concentrated sources of egg allergens that I can envision, short of meringue.  <shudder>

It would completely make sense that if you have an egg allergy, that would have elicited an anaphylactic reaction, leaving you WAY more sensitive to any and all other stuff for the time being.

One other thing worthy of note-- most "almond flavoring" isn't almond-derived.  It's cheaper, apparently, to extract it from apricot/peach pits using some industrial process.  That's why so many almond flavorings do NOT list "tree nut" on the label.  Of course, you'll have to call to verify that this is so, but a lot of the time it's the case.  "Almond" scent/flavor isn't always. 

Keeping my fingers crossed that you'll start feeling better (and safer!!) soon. 

YouKnowWho & CMDeux, thanks yet again for taking the time to eductate and support--it's so appreciated, especially because I don't really have anyone in RL who gets this at all. DH sort of talks a good game, but is generally slow to adapt to change and this is no exception--I can tell he thinks I'm being paranoid, and no one seems to get that it's not quite as simple as avoiding scrambled eggs or a big handful of almonds.

Every day I seem to be adding more experiences to the "allergy file" in my brain, trying to sort through what is really happening. Not sure if it's making the picture clearer or more murky! Monday evening (about 7+hours after all the tests at the allergist), I was coaxed into a quick dinner with DH at a favorite restaurant down the street. It's a brewpub. After a bit of thought and many questions to the waitress, I ordered something that seemed safe, and a glass of white wine. Before our food even came, I began to feel funny. It started almost immediately after taking my first sip of the wine, but I think that might have been a coincidence. I stayed, and made it through dinner (once again thinking I was imagining it), until finally I was feeling so droopy and lightheaded, I told DH we needed to go. As soon as I got outside, I began to perk up and felt much better by the time we got home. Only then did DH mention that we were sitting right next to the door to the room where they actually brew...stuff. Not sure what they were brewing at the time, but he said people were coming and going through the door the whole time we were there, and it was often just left open (it was right behind me). They make all sorts of spirits as well as microbrew beer, and who knows what's in it, with all the crazy flavors of beer and liquor these days. Anyway, I was just stunned that once again I could possibly have reacted to something in the air. I said something to DH very similar to this:

Quote from: CMdeux on June 12, 2012, 11:06:22 AM
Something to be aware of is that if your very serious reaction (and wow-- are you ever LUCKY to have had that self-resolve) was not that long ago, skin testing may show artificially elevated responses to a TON of things becaues of your entire immune system being on a hair trigger right now (and for the next few weeks, probably).

Many adults find that they react to MANY more things than they are actually allergic to by virtue of having their immune system so amped up all the time from exposure to a true allergen.  It's a little hard to explain how that works, but it's basically like filling up a coffee cup-- once you get VERY close to the rim, even a few drops can cause an overflow (a reaction).  If the cup were more empty, then that would never in a million years have happened.  KWIM?

It's so interesting that you bring this up. I said the same thing after the restaurant debacle--that maybe because of the skin tests--so many of them, and I felt fairly sick at the dr's office just from the testing--that maybe I was all full of histamine and more reactive, and it wouldn't take much to push my immune system into overdrive. Sounds like maybe that really was the case, and hopefully that's partly the reason for the other milder reactions I've had since the first big one. I hope so. It's heartening to hear that things might calm down in the near future, because right now I feel like I'm going crazy, constantly feeling "off" and reactive in situations I wouldn't expect.

But I've come across some info that may (or not?!) shed light on WHAT I'm anaphylactic to. First of all, in trying to track down the ingredients in the angel food cake that was culprit #1, I found that many recipes contain almond extract. Hmm, interesting, I thought. Maybe it really isn't eggs!

Then, when talking to a staff member in Bakery at the store where I bought it, she read the label to me, saying it didn't list almond extract, but "the label says it is made on shared equipment with products containing nuts." Didn't say which kind, though, just "nuts."

She gave me the contact info for the supplier who makes the cake, and the person there was very helpful, seeming to go out of her way to track down info that was confusing. She called me back within the hour to say that despite the statement on the package, that cake is made in a facility that does not process anything with nuts. (They have two plants; the other plant does handle breads and cakes with nuts.) Ugh. Don't know what to believe. And to further confuse the issue, she added this: "That plant DOES process buns with sesame seed toppings, but according to my manager sesame's not really considered an allergen."  I said that actually it definitely IS an allergen for some people; it's just not one of the top 8 and doesn't have to legally be listed as such. (Putting to good use the knowledge I've gained from these boards!) She quickly said, "Oh, yes, that's what I meant!"

Anyway, now I'm stumped. I wasn't tested for sesame. There really isn't anything else in the cake that it could be, I don't think, but eggs or possible cross-contamination with nuts or sesame. Right now my plan is to wait for the RAST to come back, probably negative I guess, for eggs (seems like the odds are against positive if the skin test is negative, right?), and ask him to test for sesame.

This is all just...confusing. I do really want to know what is actually dangerous for me, and what is not. I suppose it's like the dr said, that if the egg is negative on the blood test, he will be much more worried about the nuts than if the egg is positive.

Swaygirl