Living with Food Allergies, 2013 and on

[SilverLining]

I missed whatever news you are talking about. Sorry to hear it's making people "experts" again though. 

~~~

Just a little ha-ha to share.

DH was watching tv. I don't know if it was a commercial or part of whatever show he was watching, but there was a pecan tree.

DH: pecans grow on trees?

Me: yes

DH: really? I thought they grew in the ground

Me: may contain....

DH: peanuts and tree nuts. Well, who knew! They actually meant it.

Me: guess where peanuts grow....

[spoiler]Yes, I am a bit embarrassed that this is DH not DS. But, it is what it is. [/spoiler]

[PurpleCat]

Oh, here you go!

http://health.usnews.com/health-care/articles/2017-03-27/allergic-to-peanuts-tree-nuts-might-still-be-safe

It's been on our news broadcasts.

They never balance these stories.  As in, yes, my kid is allergic to peanuts and she is allergic to tree nuts.  And yes, multiple tree nuts.

No, I've suddenly made this all up  .  Cause we like living this way!

[YouKnowWho]

Avoid buying mixed nuts 

Don't get me wrong - no one knows better than me that test results are not perfect but on the flip side, I have struggled with finding peanut free tree nuts and tree nut free peanuts. 

[nyguy]

So my old allergist, a real old school guy, finally retired after slipping on some ice this winter. I have a new allergist, much younger, and qualification wise everything looks good (top of her class, excellent medical school, etc...) but she has very different views.

First off, I was getting allergy shots for ragweed for about 10 years now. I've been on a maintenance dose of once a month since forever. She basically told me that I was wasting my time and maximum benefit is achieved after about 5 years, and I could continue if I wanted but it really didn't make sense.

Then there's allergy testing. I've been under the severe allergy shroud since age 4 when I tested for eggs. More things have popped up since. In 2001 I tested negative for eggs (blood, scratch test, allergy challenge in office with eggs) and ate my brains out that summer (donuts, baked goods, etc.) getting hives at the end of the summer and then testing crazy high (I forget the IgE, 6 or 7 or something crazy high) and again completely severe. Other allergies developed over the years (some seasonal, pretty much all seafood, hazelnuts and pecans, mild to latex, penicillin).

Now my new allergist tells me I can probably not eat eggs themselves, but I likely can eat them in proper baked goods because the heat denatures things. I mean, I guess it's not totally fantastic (my older brother and father are so allergic to some trees they can't eat the fruit, e.g. my older brother can't eat raw apples, but he can eat apple pie no issue), but after avoiding something completely (with one limited break) for twenty years, it just feels...unreal as a possibility. My last test was in late 2014 where the blood test was totally negative on the related proteins/compounds in eggs (0.00) but the skin test blew up to a size a little over a quarter. New allergist says things are different.

I go in for allergy testing tomorrow. I wrote a long post in this thread earlier about travel, and changes in my job circumstance make it look more likely that I will have to travel again. If the testing and results bear things out I would love to have increased flexibility while eating. At the same time, I don't want to go into anaphylactic shock in a city I'm unfamiliar with - or worse, have something just before I get on a flight and basically get screwed.

Speaking of, anybody know of a good place for ordering custom allergy cards? I'm hoping for something a bit nicer and robust than something laminated from the printer... I have had some close calls at restaurants in the past few months as well as one instance where the kitchen erred in a way that ensured cross contamination in food that was served with me. (They very briefly [seconds] fried plantains in the same fryer as seafood... one small component in a bowl where all other items were sauteed in a separate clean pan). Servers are usually pretty good but I figure giving them a card to take to the kitchen with the allergies and shared equipment/oil/blahblahblah warning on it would reduce risk.

On a more positive note, there's a really good local barbecue place near me and the owner recognizes my brother and I, I've dropped emails a few times and he's always really sensitive about allergies (e.g. he knows we can't eat the cornbread but family will, so they put it in a separate to-go container in a separate bag from our leftovers and don't let it near our trays). They fry seafood very rarely but the owner has offered to schedule the next deep clean/complete oil exchange of the fryer so I can try their chicken wings

[spacecanada]

It sounds like your new allergist is up to date with current standards. 

The history of your egg allergy coming and going and coming back is slightly concerning though - and you may wish to discuss the chance of your egg allergy returning once again if it has, yet again, disappeared.  Some people who have egg allergy are able to tolerate baked egg, though you must set up a challenge and dosing/requirements with your allergist to determine if that would be safe for you.  (i.e. the baked item must be baked at 180*C/350*F for 30 minutes or more)

As for chef cards, I use the old ones from FARE.  It looks like they have updated them a bit since:
http://safefare.org/chefcard

They come in a variety of languages.  I print them on bright coloured paper, laminate them (5 mil laminate - the thick stuff), and let the kitchen keep them, as I don't want them back once they've been around food.

[GoingNuts]

I was going to suggest those allergy cards as well.  We used them when we traveled to Poland, and had them translated into Polish. 

NYguy, are you in the NYC area?  Curious who your old allergist was.  Feel free to PM me if you feel comfortable (or not, I won't be offended!).  I would also love to hear about allergy-friendly restaurants. 

I hope you can get some more eating flexibility.  Allergies while traveling are stressful!

[nyguy]

It sounds like your new allergist is up to date with current standards. 

The history of your egg allergy coming and going and coming back is slightly concerning though - and you may wish to discuss the chance of your egg allergy returning once again if it has, yet again, disappeared.  Some people who have egg allergy are able to tolerate baked egg, though you must set up a challenge and dosing/requirements with your allergist to determine if that would be safe for you.  (i.e. the baked item must be baked at 180*C/350*F for 30 minutes or more)

As for chef cards, I use the old ones from FARE.  It looks like they have updated them a bit since:
http://safefare.org/chefcard

They come in a variety of languages.  I print them on bright coloured paper, laminate them (5 mil laminate - the thick stuff), and let the kitchen keep them, as I don't want them back once they've been around food.

Thanks for my info and I've already brought up the "disappearing/reappearing" allergy thing with the new allergist. Mine would see too much use to be disposable, unfortunately...

I was going to suggest those allergy cards as well.  We used them when we traveled to Poland, and had them translated into Polish. 

I would say that they were an actual lifesaver in Italy. Even when the staff spoke English most didn't understand the difference between "this has eggs in it" and "cross contamination might kill me" until they saw it printed in their native tongue. (Still useful in the cities but very much required in the more rural areas).

NYguy, are you in the NYC area?  Curious who your old allergist was.  Feel free to PM me if you feel comfortable (or not, I won't be offended!).  I would also love to hear about allergy-friendly restaurants. 

NYC metro, and the restaurant I was referencing is a good ways outside the city (regional rail to NYC distance but not somewhere someone from NYC "proper" would likely visit).

I hope you can get some more eating flexibility.  Allergies while traveling are stressful!

I generally got used to my cycle of restaurants and dishes as I (Generally in the past) went to the same place(s) over and over again, which I expect to continue in the near future. That's definitely easier than a new destination every week.

[PurpleCat]

My DD grew up allergic to egg.  In middle school she passed a baked egg challenge and 6 months later a direct egg challenge.  She started eating eggs.  3 months later she had a reaction.  She stopped eating direct egg, only baked.

Now at almost 18, she eats baked egg all the time but can not eat direct egg.

Egg must be mixed with wheat protein and heated at a high temp for at least 10 minutes for her to tolerate it.  So, no egg washes, no pancakes or waffles unless I cook them to the max.  But cakes, cookies, meatloaf - with some wheat, etc... are all good with her.

Her egg numbers go up and down.  Reaction history is more important.  Although her allergist is tempted to rechallenge direct egg, neither DD nor I want to.  It is scarier to have an allergy come back.

We know of others this has happened to as well.

[nyguy]

Went to the allergist today. All scratch kin tests were completely negative on the food front and they tested a ton of things between food and environmental. I haven't taken an antihistamine or a product containing an antihistamine (sleep aids, decongestants, painkillers that bundle it as a sleep aid, etc.) in over a month. We'll have to see what the blood test results show and go from there...

Obviously the control worked and so did some environmental stuff (small dust reaction, larger reaction to ragweed) but nothing for food at all. Honestly I'm kind of floored. I know my last allergist was extremely cautious but it seems like a highly unexpected result, especially considering my last skin test ~2.5 years ago for egg having enough of a reaction where my prior allergist felt vindicated. (New allergist took over the practice and has my 1 inch+ medical history).

New allergist was very supportive about how cautiously or not cautiously I wanted to take things. If it bears out and I do an allergy challenge I'll have to make up my mind. I'd probably be less sensitive of cross contamination on shared surfaces/fryers but avoid things heavy or primarily consisting of eggs/seafood. We'll have to see.

[GoingNuts]

That is very encouraging!  And so is the attitude of the new doc, who is being respectful of your opinion.   

[spacecanada]

I went surfing this weekend.  I took lessons from a well-known surf school for two days.  It was so much fun that I cannot wait to go again and again and... you get the idea.

The surf school actually flagged my allergies, asked if I had an EpiPen when they saw them on my registration form, and had Epipen protocols of their own.  All their instructors are EpiPen trained.  EpiPens are stored in a large and brightly coloured dry sack on the beach with the first aid kit so it is easy to find.  It was certainly reassuring to take lessons from a company that already had these protocols in place.

Now... I wonder how well an EpiPen works through a neoprene wetsuit.  (5mm/4mm thick)  That could be interesting to try to peel off a wetsuit to administer Epi.  I guess injecting it into the suit would provide some drug (slower release if it hit fat instead of muscle) at least until the suit can be removed and a second dose is given.  What do you think?  I'm super curious especially since I now have a 5:4 full wetsuit and plan on using it often, year-round.  (We live very close to the ocean, though the wrong side of the island to get surfing waves at home.)

[SilverLining]

Didn't they test and say you can inject through denim? Is the wetsuit thicker?

[SilverLining]

How odd!

I just went to their website to see if they specified how think of clothing you could inject through, (I didn't find an answer, just that you can inject through clothing.

But...I did find this,

http://epipen.ca/en/about-epipen/how-to-use

They are back to "swing and jab"? Was "hold and press" not working?

[spacecanada]

Denim is about 1mm thick. My wetsuit is a 5:4, meaning 5mm on the torso and 4mm on the joints and lower limbs. Granted, I have an athletic body (leaner than average) even though I carry more fat on my thighs.

I think the jab helps the needle go deeper, especially when needle length may be a concern. I think I read somewhere that injecting into fat still works, just less efficient and slower to work than into muscle directly. Don't hold me to that fact though.

[PurpleCat]

How odd!

I just went to their website to see if they specified how think of clothing you could inject through, (I didn't find an answer, just that you can inject through clothing.

But...I did find this,

http://epipen.ca/en/about-epipen/how-to-use

They are back to "swing and jab"? Was "hold and press" not working?

hummmmmmm.....could this have something to do with the recall?  "a defective part that may result in the devices' failure to activate"