Unexpected Reaction

[hobbssa]

I was recently diagnosed with peanut and tree nut allergies through a scratch test at my allergist's office.  I have been reading labels like crazy as my first reaction scared the daylights out of me.  Last night after dinner I ate a Hostess Ding Dong after reading the package.  No reference to any nut allergens or processing in a nut facility.  Within minutes I had a reaction had to take benadryl, my epi and go to the ER as my throat was swelling.  Again scared the daylights out of me.  I am the only one in my family with food allergies and when diagnosed at 40 this is all new to me.  Until now I only had my asthma to worry about.

I was able to be treated and released and given a prescrip for a 5 day cycle of steriods.  I called today and made another appt with my allergist.  I also called Hostess asking about there plant processing and were they nut free.  They told me that the plant was totally nut free so I asked if they received any ingredients from outside the plant that may contain or was processed with nuts.  They said they would check with their suppliers and get back to me but was very apologetic.

My throat still doesn't feel the best but doesn't feel swollen.   On top of that I still don't feel the best, chest still feels a little tight but I am sure some of that is anxiety/worrying about the whole situation.

Since to date I have only been tested for nuts I am now fearful that I may have more food allergies that expected.

How do you deal with food allergies?  As I am so scared to eat anything now.  Any advise and/or recommendations are greatly appreciated.

Thanks in advance! Sherry

[starlight]

Three thoughts.

1) did you wash your hands before you ate the ding dongs? if not, what did you touch before you ate them? What was on the shelf next to the ding dongs? (thinking nut residue either on the package or on your hands)

2) What did you have for dinner? Reactions can be delayed, so what may have seemed like it was the ding dongs actually might have been cross-contamination in your dinner.

3) You may have developed another allergy.

[SilverLining]

Hi, and welcome to the forum.

I also have adult onset allergies.  Mine are peanuts and sesame seeds.  I don't know about nuts, but since originally peanuts and nuts were usually cross contaminated with each other, I still just avoid them all.

I find Hostess very confusing.  I am in Canada and when they returned I called and was told they are peanut/nut free.  But when I found them in a store here they have a warning.  Next time I'm in the store I'll see where they are processed.  Because I thought they were imported from the US....so why would yours be safe and mine not? 

When you were released from the hospital did they tell you to keep an eye out for a biphasic reaction?  occasionally after an anaphylactic reaction, there will be a second reaction. 

As for feeling bad, I was exhausted after an anaphylactic reaction.  Absolutely physically and emotionally drained.  Also, the steroids can mess with you.

As for how to deal with allergies....for now, try sticking with things as natural as possible.  The less ingredients, the less risk of cross contamination.  And read all labels.  Even some breads have nuts, or are cross contaminated with peanut.

And feeling fear right after a reaction is NORMAL.

[twinturbo]

Until your diet/allergens get stabilized fall back on some single food items only one step removed from it's native form. Like a potato, rice, veggies, non-peanut legume if you can consume it, cheese, milk, egg, beast, fish, couscous (unseasoned). I'm not on you for the Ding Dongs at all but it being a highly processed manufactured food you are shackled to the manufacturer's suppliers and disclosures. Don't kick yourself over it just get on sort of a fallback simple whole foods diet (not the hippie kind) but WATCH the produce section for where they store nuts and if they change the produce around often with nuts.

What I'm fuzzy on is your diagnosis and resulting plan or lack of it through your allergist. Walk me through the time line here.

#1 was a scratch test for nuts from allergist?
#2 was your first reaction after the scratch test?

There's a gap in how you first got to the allergist's office for the SPT (scratch test). How would your first reaction be after a SPT? It may have just been the way you wrote it.

Take a look at the Auvi-Q autoinjector. If you're nervous about the idea of having to inject yourself you might find the form factor a little easier. Then again you may not.

Let's talk action plan after we clear up the scratch time line.

[Sherry Hobbs]

Thanks for the replies.  I will answer your questions best I can.

1) did you wash your hands before you ate the ding dongs?  yes 
What was on the shelf next to the ding dongs? (thinking nut residue either on the package or on your hands) I don't know hubby bought them and I was not with him.

2) What did you have for dinner? Reactions can be delayed, so what may have seemed like it was the ding dongs actually might have been cross-contamination in your dinner.  We had meatball subs. 

3) You may have developed another allergy.  That is what I was afraid of.  I made an appointment with my allergist for Monday.


Hostess is definitely confusing.  When I called them they told me to look for a series of numbers by the sell by date, if it contains the number 24000 it is made in the nut free facility and if it is 23000 that is their facility that processes items with nuts.   they are checking on items like the chocolate that they get from other suppliers that is not processed in their facility.

When you were released from the hospital did they tell you to keep an eye out for a biphasic reaction?  occasionally after an anaphylactic reaction, there will be a second reaction.    Yes they did and I actually went back to the hospital last night because I had a tightness in my chest and an uncomfortable feeling in my throat.

As for the comment on sticky to whole foods as much as possible.  Makes perfect sense.  Again this is all new to me and learning but am serious thinking along those lines.  As for the produce section of my normal grocery store the nuts are normally around the potatoes or onions.  How would I deal with the possible cross contamination issue here?

As for the time line: 
-My initial reaction was on Dec 6 after eating a brownie with walnuts in it.  prior to any testing.  I narrowed it down to walnuts as I had another similar reaction to walnuts after eating a fruit salad that it had them in.  I did not realize that it was a reaction at the time until eating the brownie since I had never had food allergies. (hope this makes sense)
-I was unable to get in with my allergist since I was a new patient until Jan 16th for the scratch test for nuts.  I tested positive with a 2+ or higher on walnuts, cashews, pistachios, hazelnuts, almonds, and peanuts.  I had a negative reaction to pecans and coconut. 
-reaction to the Ding Dong was Jan 20th.

What is the difference between an Epipen and an Auvi-Q autoinjector?   I was okay with the Epi just a little nervous since it was the first time I had to use it.

[twinturbo]

Got it. I think it was just the way it was written.

First off you are handling it well. Fear is overhyped, it's a normal emotion. Obviously you need a balance of emotion but for keeping ourselves alive it's one of the better ones. You're fresh from a reaction and it's all new, you're doing all the right things. So diet, nutrition, avoidance.

Produce section. There's a few tricks there like sticking to hard rind fruits (bananas, watermelon), veg (sweet potato, onion because you'll peel the outside, etc.), bagged (broccoli, romaine, spinach) or otherwise packaged if it's strawberries or grapes throw it in another bag. I like to use self-check lanes so I can avoid the weight scales which are shared for bulk nuts.

On that note stay far away from anything in a bulk bin. Be careful when you shop to avoid any nut butter machines in the store. I can't give you an avoid radius in measurement but generally anything that would give off a concentrated amount in the air. Just look and note and avoid it should be fine.

Try to eat your foods as plain as possible. Stick to maybe garlic, salt, pepper for starters then add in a spice or say teriyaki sauce (check here for safety profile first in manufactured foods forum) about once every 3-5 days. Keep a food journal of what foods went well. Watch out for breads, bakery items, granola. Ask for help on those in manufactured if you use bread.

Make sure you're keeping some super foods in your diet as long as you're doing well with them like broccoli, bananas, blueberries, spinach and maybe find a safe vitamin. Sorry if any of this sounds common sense which of course you're already doing. I'm running on train of thought here.

[CMdeux]

We had meatball subs. 

Check those.  Subway?  Someone else? 

What else is prepared on-site? 

Home-made?  Where did the meatballs and bread come from?



honestly-- your spt results do not sound that impressive.  While this is certainly possible-- and even likely, if you were still on any antihistamines within a week of the test-- I might be keeping  a careful food diary for now. 

Sesame is a not-infrequent adult-onset allergen.  It's beastly in terms of avoidance, and many, many, many times, it can seem like allergies to a LOT of different things because it is just present in so many different items.

What history do you have of eating sesame-- just curious.    The reason is that if you are allergic to sesame, it's possible that your actual allergies are rather more limited than that long list of tree nuts (which, if I've read you correctly, you have history only to walnut).  Walnut seems (just anecdotally) not to 'pair' necessarily with other tree nut allergies.  It can truly just be a single, and at this point I might well suspect that if you've got a lot of history of eating other tree nuts.  I mean, for now, not something to fool around with.  Obviously.

But if your allergies were to walnut + sesame, then everything makes sense.

I know that Silver had an awful time until she and her doctor figured out that she has a sesame allergy-- it seemed like she was becoming allergic to everything.  That can be really, really frightening.  Mostly that isn't the case, either-- it's mostly that you have to figure out just WHAT thing is the allergen. 

[CMdeux]

Also-- I second everything that Silver and TT have suggested in terms of eating safely.

1.  Buy a little notebook, or repurpose one, or start a text file on your smartphone, whatever... keep a food diary, that's what I'm saying.  EVERYTHING that you eat, where it came from, basic outline of where/when you are in places where food is, etc.

2.  Pull back to unprocessed foods as much as you possibly can.  A shopping list might look like:


3 whole chickens
plain salt (I like Morton Kosher salt)
whole onions
whole carrots
other root vegetables (things that will withstand some scrubbing and peeling)
10 lb bag of PLAIN rice- rinse it anyway, but I like to buy rice in BIG bags, because those lines tend to be used for absolutely nothing else, and therefore eliminate a source of cross-contamination.)
a block of cheese-- your choice, but buy prepackaged, NOT deli-cut.
fruit-- anything that you're willing to wash and peel-- kiwi, apples, pears, citrus, etc. etc.


4.  you're doing a great job-- thinking to call and ask about secondary cross-contamination is way more advanced and nuanced thinking that most people are capable of so soon after a diagnosis.  Truly.  Your fear is somewhat rational because of the uncertainty associated with the newness of your situation.  Gain control and your fear will become manageable, I predict.  It sounds to me as though you're well aware of the line between what seems rational and adaptive and what isn't, and I trust that you'll know if you need to see someone to help you with any remaining irrational fear when the time comes.  For now, that fear is probably helpful.   

[starlight]

Auvi's just a new, smaller version of an epi that talks. Medicine and injection site remain the same. http://www.auvi-q.com/?s_mcid=AVQCO1363PS

I second CM, where'd the sub come from? Hopefully it's cross-contamination in the sub than a new allergy to something in the ding dong, you know what I mean?

[Sherry Hobbs]

Subs were made at home.  Frozen meatballs no nut ingredients listed.  Prepackaged cheese, shredded mozzarella.

Bread purchased from bakery at walmart.

I have had other dairy in between with no reaction but will avoid that as well as a precaution.

I have had sesame in the past in breads, sauces, Chinese, with no reaction. I have ate chinese in the last couple of weeks but nothing with sesame.

My reactions previous have only been to walnut before the reaction to the other day.  I used to eat peanut products on a regular basis as well as pistachios, and hazelnuts.  But have done my best to stay away from them the best I can since the dec 6th reaction.    However due to my test told me to avoid all nuts and make my house nut free.  Which we are in the process of doing.  However not any easy process as alot of my spices etc have been processed in tree nut facility.  While I have used them all along I am afraid to use them at all.

I will ask about testing for sesame on my next allergist visit as well as dairy. I also thought of soy and wheat.

It is terrible! I feel that I am over reacting and looking for symptoms in everything I eat.  I am trying to keep my anxiety under control in whch my family is a huge help with.  I hate feeling this way and the burden it is putting on my family.

Thanks for the note on the avoidance of bulk bins I would not have thought of that as the lettuces, broccoli and such are a goo 30 feet from any peanut/nut related items. However we do not have self check out lines at my regular grocery store that are all regular checkout lines.

I start that food diary right away to include what I ate the day of the latest episode.

A couple of questions with which foods are safe: 

Can the rice be minute rice?  what do you mean by big bags of rice?  are they the normal ones they sell at the grocery store.
How about canned vegetables?
Is shredded and sliced cheese ok if its prepackaged?

As for the cross contamination, my children have had several  friends with food allergies and they are also EMTs so I was forewarned and thought of the cross contamination issues.

HUGE thanks for all your help and trying to figure this out.  I could handle the itching, hives or rashes if they were the symptoms but the anaphylaxis scares me so bad.   



 

[CMdeux]

Can the rice be minute rice?  what do you mean by big bags of rice?  are they the normal ones they sell at the grocery store.
How about canned vegetables?
Is shredded and sliced cheese ok if its prepackaged?

Honestly?

You're probably better off it you skip things with even this ONE additional processing step until you're very sure of what you're trying to manage. 

Minute Rice-- would be no from me, but opinions differ.  I know some PN/TN people use it.  We do not.

Canned veggies... er-- no, I really wouldn't.  Canned tomatoes are one of the least probable sources of other contaminants, IME, if you feel that you must.

I would NOT do shredded/sliced cheeses if you have any way around it.  I know that they are really convenient-- but a salad shooter can make pretty great shredded cheese in a hurry and then go into the dishwasher afterwards.

Most of that is convenience food that you'll eventually add back, barring something unexpected happening...


Also-- minimize eating out.  Like, entirely.  Food you don't control (for now) is food you don't eat.


Call about the meatballs.  Seriously.  My DD has had reactions to things like that, which seemed unlikely, and read fine from the label.  Sure enough, when she called they were processed in a facility or some such thing.

I wouldn't be too worried about sesame if you haven't had any problems eating concentrated sources of it.  If you were allergic, you'd know, in light of that.  I mean, sure-- mention it, but I'm not even sure it's worth testing for.

Soy, milk and wheat, similarly-- they are so ubiquitous that you'd have had a LOT more trouble.  My DH has a soy allergy.  It's a hard one to completely avoid even with a high threshold.

The only value in testing for those things is to get a sense for how likely your body is to test falsely positive-- if one  or more of them comes up positive, then you'd have reason to think that not all of the nut results are likely to be positive, either.  The reason why this might matter down the road is that walnuts are a rare contaminant in a lot of OTHER nutty things, which you could then theoretically bring back into your house for your other family members.  KWIM?

[CMdeux]

Bread purchased from the bakery--

made on-site?

If so, I'm betting on the bread and walnuts.  Do you have the bread tag/bag?  If so, you might call and find out if anyone remembers what else was in the ovens/floor mixer/bench on the date it was made.  I'm guessing something with walnuts.

[yelloww]

In the grocery store, in the section where the rice is sold, there are giant bags of rice on the bottom shelves. I think we get the 5lb bag. It isn't minute rice. You have to cook it for 20min, but it is real old fashioned plain rice.

[twinturbo]

Prefacing this with I am so not judging how anyone eats. No shooting messengers here.

I'd use this as a opportunity to shift your entire eating a bit. Get a Costco rice cooker and a Costco sized bag of white rice, brown rice, safe brand of quinoa (Ancient Harvest) go whole foods only one step removed from their form. Only because each step of the manufacturing process means you're relying on someone else to know what's in there, where it got processed and how much has been revealed to you.

Seriously not a judgment. I personally am sure I'm at least 20% MSG by volume. I miss those super nasty Nong Shim instant ramen bowls and it's only because of the allergen concern not because the processed nature or MSG. I also miss bubble tea with the neon artificial color and flavored taro or melon.

Eat like royalty meaning make sure to know and trust who made your food. Don't kick yourself for being concerned. It's a new powerful stimulus for your nutrition to get broadsided into a danger at the flip of a switch like this. Establish what you can have. We would all love to help you develop a menu if you ever need that. You won't ever have to be alone on this.

[Sherry Hobbs]

You are all so awesome!  I do have some long grain rice here in the house but is in a box not a bag.

As for the cheese noted.  I have a cheese grater so block cheese is not an issue.

As for allergy testing, in your opinions which is the best alternatives?  Should I get the scratch test or ask for blood work? Both to see which is the best?

I love corn which is hard to get in the fresh produce session unless it is in season.  Any suggested alternatives there?

Suggestions for breakfast?

I plan on heading to the grocery store tomorrow so any insight would be helpful.