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Welcome => Welcome and Introduce Yourself => Topic started by: jschwab on October 22, 2013, 11:44:48 PM

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Title: This allergy is going to break my spirit
Post by: jschwab on October 22, 2013, 11:44:48 PM
Hi, I'm checking in for help and maybe to vent every once in awhile  ~). I developed anaphylaxis to shellfish and dairy a few years ago in my late thirties, but was able to avoid serious reactions through strict avoidance and I never had to use my Epi-Pen, with strict avoidance meaning no restaurants except except for the three that I knew could guarantee no cross-contamination and never eating at anybody else's house. I also developed a lot of hobbies and social interests that did not center around food in compensation for the lifestyle change. I was episode-free and feeling really solid in my plan until the other day when I had the worst episode I've ever had eating food I personally cooked in my own house. Hubby had to christen the thigh with the Epi which I had never need to use previously and I ended up in the ER under watch. I was flummoxed as to what could have happened but confirmed the next day that it was a new allergy to almonds. I had reacted for the very first time to a splash of almond milk in a custard I had made. Up until just before this, I ate almonds daily and I had just bought roughly 10 pounds of almonds at Trader Joe's (I wish I was making that up!). I am not the smartest bug so I actually confirmed it by eating an almond the day after the ER visit (obviously, Do As I Say Not As I Do and never, ever try this at home!). I was still on the steroids which maybe helped mitigate a reaction and I was able to just take some Benadryl and suffer it out without returning to the ER. A week later, feeling pretty confident I could avoid the allergens with the type of label-reading and cautiousness that had gotten me through my other food allergies, I ate a bag of chips at a cafe I always go to clearly labeled "does not contain tree nuts". I almost passed out on my six year old and I developed head to toe hives. I don't know anyone with adult onset food allergies like this (except my mom who developed shellfish allergy around the same time I did but hers is not as severe). Unfortunately, everything in my house contained almond derivatives, including my body lotions, so almond oil was on every surface of the house and I kept reacting to it. We also used a lot of almond flour so that was in every nook and cranny of the kitchen. That is more under control now with cleaning and I am finally able to turn my attention to thinking through how to handle this. I have had mini-reactions to lots of things - potato chips from major manufacturers, etc. I just really don't know how to figure out what to eat that is safe and I'm having all types of reactions seemingly unrelated to almonds or tree nuts. I had to give up my laundry detergent (pine derivatives?). I almost keeled over with lightheadedness and doom feeling after eating eggplant last night which I never eat and dry heaved for ten minutes from eating roasted squash seeds which I also never eat. I'm just writing it all down and will be seeing an allergist in a month. Anyway, HI and I appreciate any and all advice and information!
Title: Re: This allergy is going to break my spirit
Post by: twinturbo on October 22, 2013, 11:58:19 PM
That's a lot to deal with! I'll start with a hi, a virtual hug, and good on your husband for giving you the epi. After my big reactions I have about two weeks of seemingly reacting to everything.
Title: Re: This allergy is going to break my spirit
Post by: rebekahc on October 23, 2013, 08:15:57 AM
 :grouphug:

Yes, I agree with twinturbo.  Once you get your system calmed down and are successfully avoiding your true allergen(s), the random reacting should stop.  I believe SilverLining has experience with that as well.

Welcome!
Title: Re: This allergy is going to break my spirit
Post by: jschwab on October 23, 2013, 08:47:24 AM
Aw, thanks for the messages. I am glad to hear it might calm down! My husband was REALLY on it with the Pen and I am so grateful. The tip actually bent but he was still able to jab it in and get all the liquid out. I was terrified of the pen before this happened but as soon as he gave it the throat swelling stopped and I could breathe.
Title: Re: This allergy is going to break my spirit
Post by: SilverLining on October 23, 2013, 10:12:24 AM
Hi.  Sorry to hear all you are going through.

I was thirtyish when I suddenly developed food allergies too.  I figured out the peanut fairly quickly, but darn sesame seeds are in everything.  And I continued eating trace amounts, so didn't  realize the daily reactions I was having were to unlabelled sesame.  Then, eating a sesame snack I had an anaphylactic reaction.  I wasn't carrying an epi because all the doctors said my reactions would never be anaphylactic. 

Like you....I needed to test the theory.  Was it REALLY sesame seeds?  At the time, they couldn't do a test....so...I went to McD's.   :hiding:  let's just say....I've never been back since.

But, still it took a while to find out where all the hidden sources of sesame were, and cleaning cleaning cleaning my home.  And in the meantime, reacting.  Not anaphylactic, but all over body hives, or getting hoarse.  Sheesh!  It was happening all the time.  I did manage to pinpoint cats and dogs.  My neighbour's cat liked to run down the hall and lie across my doorstep to get the cool breeze under the door....and the dander and hair would float into my home.

But, when I finally managed to completely eliminate the peanuts and sesame seeds from my system! I slowly stopped reacting to the animals.  (Actually, I also reacted to either gorillas or something near the gorilla habitat! but that wasn't 't such a problem.  None lived in my building.)

Sorry....back on track....

I don't know why some people suddenly develop allergies as an adult.  But I think it totally confuses our systems.  Something that used to be good for us suddenly becomes the enemy.  When we overfill our "allergy cup" I think our bodies just decide to turn against multiple things.

But, hopefully, like me, if you completely eliminate the REAL allergens, your body will realize it doesn't have to attack multiple foods.
Title: Re: This allergy is going to break my spirit
Post by: SilverLining on October 23, 2013, 10:15:18 AM
Quote
I almost keeled over with lightheadedness and doom feeling after


That feeling of doom is a symptom of anaphylaxis.  I'm going to look for the grading chart to add in here.

 Here's the plain language one.

http://the-clarkes.org/stuff/ana.html
Title: Re: This allergy is going to break my spirit
Post by: GingerPye on October 23, 2013, 11:40:34 AM
No advice to add but hello and welcome!!  I know you will get good support and info here.
Title: Re: This allergy is going to break my spirit
Post by: CMdeux on October 23, 2013, 11:57:00 AM
Add me to the list of adults who should REALLY know better, who have engaged in the inexplicable denial-fueled need to doubt unto risking one's life in the search of a loophole.

Your body;  "Hahaha!  Just kidding.  No, not really! It was just a fluke!"

 :disappointed:  Yeah-- no, it wasn't.  For me it was shellfish.  Sometimes it is really bad, and sometimes only kind of bad.  Unpredictable.

I have not felt the need to "check" it again for many years.   I still miss the allergen, but only in an abstract sense, given how bad shellfish now SMELLS to me.  In my memory, it's lovely, though... 
Title: Re: This allergy is going to break my spirit
Post by: jschwab on October 23, 2013, 01:02:26 PM
Quote
I almost keeled over with lightheadedness and doom feeling after


That feeling of doom is a symptom of anaphylaxis.  I'm going to look for the grading chart to add in here.

 Here's the plain language one.

[url]http://the-clarkes.org/stuff/ana.html[/url]


Oh yeah, I know. My throat did not swell shut but I had the doom/MUST LIE DOWN AND SLEEP immediately feeling. I put it on my "list" of stuff I've reacted to since that almond reaction, just for the allergist to look at. It could also be cross-contamination since my husband has a severe gluten intolerance (he has always been good about saying intolerance instead of allergy, BTW, even before I developed allergies) so half of what we ate was made with almond flour. I'm hoping it all calms down, though... In some ways it doesn't matter because I'm already so restricted. Do for real allergic people for real eat out on a regular basis because I cannot fathom that? I was cool with Outback and Five Guys before this nut thing. I'm feeling the world closing in a bit. I just had a meeting in DC (I am chair of a Board of a small nonprofit) and was so stressed by the lunch/social aspect.
Title: Re: This allergy is going to break my spirit
Post by: jschwab on October 23, 2013, 01:35:57 PM
I just looked at that chart and it is really useful - thank you SO much for posting. Part of my denial process has been to ascribe symptoms as being not serious or not really allergic reactions. Or, say, in the case of that meal with the eggplant to think that because my sleepy/doom was not accompanied by throat closing, just merely throat scratching, that it was not really a reaction. Or, oftener, to think that JUST having my throat close/sense of doom is not really an allergic reaction because I don't get hives or swelling. My shellfish/dairy was all throat closing and the sensation only ever lasted for a short period and nothing else so, for a long time, I did not take it seriously. So, even though during my last reaction 18 months ago my throat closed all the way, I discounted it and did not use my Epi because it opened on its own within 30 seconds. This whole almond thing has felt bizarre because suddenly I seemed to have all of the classic symptoms, just not all at once. And then there are these other reactions that popped up after the almond - squash seeds are severe, sudden nausea and dry heaving (but no vomiting - does that count??) and then the eggplant just sleepy doom. The almonds were throat closing/doom/passing out the night I went to the ER, but a week later with the "funny" potato chips I had real, immediate hives, doom, flushing and only a little throaty symptoms. I also was always under the misconception that hives were big lumps (did I pick that up from cartoons??) so I did not even realize my full body rash was hives until I looked up pictures of patches of hives. I have felt like if the allergies were "real" they would look the same all the time and also look like other people's reactions (not vomiting and not breaking out in hives having been my biggest triggers for feeling like they are not real).
Title: Re: This allergy is going to break my spirit
Post by: YouKnowWho on October 23, 2013, 01:50:11 PM
Keep in mind the sleepy doom could have been your blood pressure dropping.  We now keep a cuff on hand for mine (have experienced that numerous times).  Though mainly for drug reactions.

My allergist is okay with me avoiding eggplant but thinks it may have been a wine/high histamine food reaction.  But that darn sense of doom combined with years of itchy throat while eating it has scared me off.  DH is glad, he detests eggplant.  I miss it but not the feeling that occurs while eating it.

My banana allergy morphed from what was likely oral allergy syndrome to anaphylactic.  But it took years to figure that out and it wasn't until roughly 15 years after my first ana rxn to banana that I was able to piece things together.  Heck, even the ER refused to recognize that banana was the true cause of the ana rxn - they assumed it was the nuts in the mix as well (I was accidentally served banana nut pancakes one Christmas morning while I was working as a nanny, Merry Christmas we killed the nanny).

And sadly it started to come together after my son was diagnosed with his allergies. 

On the front of the gluten intolerance/almond allergy - beware of any flours from Bob's Red Mill (their tree nut warning is due to the almond flour) and also be aware of loose flours in health food stores. 
Title: Re: This allergy is going to break my spirit
Post by: CMdeux on October 23, 2013, 02:04:53 PM
Quote
Do for real allergic people for real eat out on a regular basis because I cannot fathom that? I was cool with Outback and Five Guys before this nut thing. I'm feeling the world closing in a bit. I just had a meeting in DC (I am chair of a Board of a small nonprofit) and was so stressed by the lunch/social aspect

Well, the truth is that it's NEVER without risk, and it's NEVER entirely what it is for people without allergies.

Honestly, we only go to a handful of restaurants without considerable 'ahead-of-time' preparation, including phone calls ahead of time, etc. etc.  We go to those few again and again, and all three of us tend to get the same things each time.

Even so, there are generally only 2-5 items on a typical menu that are "okay" for any one of us.  That's what I personally find the most aggravating thing.  I might LIKE everything on the menu, but get stuck ordering something I'm not wild about, just because it is lower risk.  And then other people wonder why I could care less about "dinner out" at a restaurant....

My family has the following allergies distributed among three people:
walnuts
pistachios
cashews
peanuts
soy
shellfish ( crustaceans)
egg
milk (high threshold now, though)
citrus fruits (probably OAS-- cooked is okay)

The soy, citrus fruit, and milk are the only ones that we don't really "worry" about in terms of possible anaphylaxis risk-- it's so improbable given the amounts that would be needed, see.

My DH and DD both have pretty significant OAS-- and it's at times been so bad that we've worried about it being true allergy.

Like you, we've built our lives around hobbies, activities, and friends who DON'T revolve around food-food-food.  Still, it comes up fairly often in the context of professional activities, leadership/awards/service, and family...

it's always stressful, and every situation involves risk-benefit analysis all it's own.
Title: Re: This allergy is going to break my spirit
Post by: SilverLining on October 23, 2013, 04:10:52 PM

My throat did not swell shut but I had the doom/MUST LIE DOWN AND SLEEP immediately feeling.

My worst reaction, I developed hives, took benedryl, and the hives were fading, coming back, fading, coming back.  Like a wave.  When they finally completely faded, what I was left with was a feeling of doom and sleepiness.  I wanted to go to bed.  When I found my husband (we were walking through a mall) I meant to say "I want to go home to bed" but what came out was "I want to go to the hospital".  I made it to the hospital before losing consciousness...but just barely.

Quote
Do for real allergic people for real eat out on a regular basis because I cannot fathom that? I was cool with Outback and Five Guys before this nut thing. I'm feeling the world closing in a bit. I just had a meeting in DC (I am chair of a Board of a small nonprofit) and was so stressed by the lunch/social aspect.

I haven't eaten in a restaurant in about 20 years....until this summer.  I found a place that is peanut/nut free, and they were able to make my meal sesame free as well.
Title: Re: This allergy is going to break my spirit
Post by: jschwab on October 23, 2013, 11:34:30 PM
Quote

Like you, we've built our lives around hobbies, activities, and friends who DON'T revolve around food-food-food.  Still, it comes up fairly often in the context of professional activities, leadership/awards/service, and family...

it's always stressful, and every situation involves risk-benefit analysis all it's own.

I'm not working right now but I worked in kind of a hostile environment at a short-term professional position this summer. When there was food involved, I was just excluded which sucked because I am happy to sip a drink while others lunch. I had my old job pre-allergy and was able to work around it and I had a lot of seniority so no issues. But almost all the work I've done is heavy on food being a central part of the environment. It's one of my biggest anxieties with this nut thing - that I just won't be able to do the kind of work I am qualified for which also would normally involve travel. It's really stressful. I found that I was quite happy sharing when appropriate about the shellfish and dairy (because easy to avoid) but this one makes me want to just run and hide, quit my professional obligations and just give up on living a  public life. Even though I am not working because I need to be home with my kids right now, I still have a toe in via volunteer/leadership positions and I plan to work again when I have child care. I was supposed to be at an event for an organization I have worked with just prior to the major reaction and missed it due to severe stomach distress (guessing this was the leadup to the anaphylactic event?). I still have not contacted the organizer to apologize - just can't face it. I was so spunky and not anxious or stressed at all through my food allergy diagnosis the last time but this one is pulling me under the rug. It's incredibly helpful to hear about other people experiencing similar issues. I know some adults with food allergies but they are not restricted in any real way, don't carry an Epi-Pen, etc. Nobody else in my family has a food allergy except my mother to shellfish but she has only ever had one reaction years ago and is fine with just not eating it. None of my kids or my husband are food-allergic.
Title: Re: This allergy is going to break my spirit
Post by: jschwab on October 23, 2013, 11:44:38 PM

I haven't eaten in a restaurant in about 20 years....until this summer.  I found a place that is peanut/nut free, and they were able to make my meal sesame free as well.

I think that is where I am headed for awhile. We were down to two chain restaurants (Five Guys and Outback) and one tiny Italian restaurant we could hold in our back pocket if we ever had to have a social dinner with friends or family. I'd be curious to know where that nut free restaurant is, and can I tell you I am glad to hear you have an option now! Personally, I don't care about being able to go out to eat but if friends suggest going out to dinner or we have a special occasion and we need to entertain an out of town special guest or something, I really appreciated having that one option to fall back on. We entertain a lot and always insist that people come here for dinner with no expectation of reciprocity - and we make that very, very clear so there is no guilt. But we have lost friends who have not been able to let go of feeling like they need to reciprocate.
Title: Re: This allergy is going to break my spirit
Post by: GoingNuts on October 24, 2013, 06:18:10 AM
I have nothing to add to the good advice you've already received, but wanted to shout out a Welcome! to you.   :)
Title: Re: This allergy is going to break my spirit
Post by: SilverLining on October 24, 2013, 07:23:45 AM
I'd be curious to know where that nut free restaurant is, and can I tell you I am glad to hear you have an option now!

The restaurant is in Niagara Falls.  Unfortunately, I don't live there....but I think we might go back just for the food.

It's a husband and wife that own it.  The wife developed food allergies as an adult, and they really do "get it".

As for social.....I have attended some "dinners" where I eat before going.  People say "it's not about the food it's about the socializing, you should come".  And some mean it....and others get offended that I don't eat.

I have attended one wedding where the bride got all nasty because I would not eat the meal.  This was not someone I was close to. (My husband's assistant.) it was out of town, and she thought I should attend the ceremony, eat in the car, then attend the reception.  On my own anniversary.  I said no.  We could attend either the ceremony OR the reception.

My brother's wedding, and one of my son's weddings, I brought my own food.  My other son's wedding, they specifically chose a peanut-free caterer who could also provide a sesame free meal. (And a vegan meal for another guest.)
Title: Re: This allergy is going to break my spirit
Post by: jschwab on October 28, 2013, 11:19:29 PM
I'd be curious to know where that nut free restaurant is, and can I tell you I am glad to hear you have an option now!

The restaurant is in Niagara Falls.  Unfortunately, I don't live there....but I think we might go back just for the food.

It's a husband and wife that own it.  The wife developed food allergies as an adult, and they really do "get it".

As for social.....I have attended some "dinners" where I eat before going.  People say "it's not about the food it's about the socializing, you should come".  And some mean it....and others get offended that I don't eat.

I have attended one wedding where the bride got all nasty because I would not eat the meal.  This was not someone I was close to. (My husband's assistant.) it was out of town, and she thought I should attend the ceremony, eat in the car, then attend the reception.  On my own anniversary.  I said no.  We could attend either the ceremony OR the reception.

My brother's wedding, and one of my son's weddings, I brought my own food.  My other son's wedding, they specifically chose a peanut-free caterer who could also provide a sesame free meal. (And a vegan meal for another guest.)

We always bring our own food when we go to parties and we don't eat at all at catered events (thought the kids do) and people are usually really nice about it, thank goodness. We tend to entertain a lot at our house and people are always glad to come to us because we try to make good meals. My husband has severe gluten issues that predate my allergies so we were already used to being the food outsiders when I developed my allergies. I was pretty mad because we'd already overhauled our diets a lot for him and were used to going without and being strict but food allergies are just a whole different level of needing to plan and be careful. Friends of ours are planning a wedding and planning to have the food allergen-free for us. I know I won't have that level of trust, though, so it will be hard to break it to them.
Title: Re: This allergy is going to break my spirit
Post by: SilverLining on October 29, 2013, 08:47:10 AM
I'm in Canada, and I assume you are in US?

Up here more companies got on the peanut free bandwagon a long time ago.  I do think, overall, allergen labelling is better here.

Most catering companies that want to do schools, day cares, daycamps, etc., must be able to provide peanut safe food.  Sometimes the entire company must be peanut free to get the contracts.  Now, many of those places are also insisting the catering company be able to accommodate other allergens.  So, when my son was getting married, he was adamant that his mom would NOT eat out of Tupperware, so he specifically questioned about allergens.

So, in this case, it was not a caterer doing anything special for me, it was finding a caterer that already does it all the time.
Title: Re: This allergy is going to break my spirit
Post by: jschwab on October 29, 2013, 09:17:10 AM
Yes, in the US where it IS getting better and there is a lot of awareness but there are also a lot of people with allergies who don't have issues with contamination so there are different levels of attention by kitchen staff depending on their personal knowledge. I think it's the "multiple" in the multiple food allergies that's part of why I can't eat out. I have shellfish, milk and now nuts, plus I have some food intolerances. That is just a lot to cover. I get a rash from rice so I stopped eating it a long time ago. Chocolate gives me a migraine as do any natural flavors or MSG (nearly instantly). I don't eat gluten because it makes my husband very sick, even crumbs. I trust two chains and I've always done well in vegan restaurants so long as its not fake meat based but I've had serious reactions from cross-contamination from independent restaurants where I was assured everything was handled properly so I just stopped trying new ones. One time I nearly passed out on my nine year old after eating a very simply prepared steak at a pub style restaurant and the waitress seemed extremely careful and knowledgable. We were alone and I was stressed that my daughter had to deal with that and that's when my restaurant going ended. I don't know if there is a "severity" scale for food allergies but mine have always been sensitive. I know a ton of people with food allergies who never, ever have to worry about cross-contamination at all but I have always had issues. I was just talking to a mom last night whose son has shellfish allergy but eats everywhere and just does not order shellfish. That is very far from where I am at although I was hoping to get closer to that over time. I was feeling like maybe I was getting less sensitive just because it had been a long time since a cross reaction but then this new, more severe allergy popped up.
Title: Re: This allergy is going to break my spirit
Post by: SilverLining on October 29, 2013, 11:50:39 AM
I do react to cross contamination.  Other then the one restaurant and one catered wedding, I don't eat out.  Our vacation was two days drive, and we ate out if the cooler.  Just not worth the risk.

Rented a cottage with a full kitchen and brought my own bread machine.  I have found a safe bread where I live! but even if the same brand of bread is available so far away! it would be from a different plant, so I would have to verify it's safety.
Title: Re: This allergy is going to break my spirit
Post by: jschwab on October 29, 2013, 03:40:00 PM
We always carry everything in the cooler, too. We've turned to camping and outdoors activities where it's normal to carry your own food for family vacations and that's been good.
 
Peanuts are so tough for contamination - I can't imagine it's very easy at all. I'm so glad to hear you were able to eat out on those special occasions, though. It makes a difference... We've been lucky to have a little Italian restaurant to go to when we need a nicer place to celebrate. Every dish is prepared in its own single pan and then oven finished so cross contamination is a lot less likely - there is no grill contamination to contend with. They are phenomenal and check every single ingredient and even keep alternative products in the kitchen in case someone comes in with a dietary issue. They even have dessert I can eat (wine poached pears). On the road, we've been able to completely and utterly trust Outback and Five Guys which was critical when I was working and traveling. I have no idea how Outback is for nuts and Five Guys is obviously off the table for now. But I might try Outback again - I have eaten at a dozen of them all over the country and never reacted at all.