Food allergy you won’t believe this moment

[Spryte]

Just earlier I was answering a thread about food allergy, and saying my allergist’s line about two systems = anaphylaxis, don’t wait till you have trouble breathing to go to the ER. Seriously. A few hours ago, essentially! I know it sounded over the top, but we live this at my place.

We had decided to try a new allergen free food. We don’t do a lot of these types of things, because they have to be special ordered. But I saw a company with some pudding mix type stuff, free of the top 14 allergens and dyes, and thought the kids could try it. They’ve never had any of those types of products because of allergies and I thought it would be an experience, and maybe a treat while DH was out of town. Wow, was it ever an experience.

DD and I tried it, and we agreed it was too sweet. I joked that it was so sweet it burned and if we ate it our mouths would go numb. DD decided she didn’t like it. I tried some more, and said, “it really burns, is it burning your throat?” And she said, “I think you’re having a reaction. Stop eating.” 

I Benadryled and took Pepcid, and laid on the couch. One system. Throat. Kids got their epipens out. 

Then I started itching, and blamed it on anxiety. Until DS took a pic and I realized I had hives everywhere. Neck, chest, torso, legs, even in my ears and hair. Two systems. Skin. Sigh. 

To be fair, I had a few more systems involved pretty soon after that.

So, yep. I spent the night in the ER after having a reaction to the “allergen free” product. Me. Not the kids, with histories of this. Ugh.

Now I have steroids and am sleeping with an inhaler and epipen within reach in case of a rebound reaction, and have to schedule with an allergist. Both kids are in my room, one on couch and one on the floor because they are worried. These things always happen when DH is out of town.
 

Note: if it burns while eating — stop eating!

 

 

Edited March 19 by Spryte

[saraha]

Woah. Glad you are ok

[KSera]

That’s wild and scary. So glad you’re okay and hope you all have a calm, uneventful night. 
 

Any idea what was in it that you reacted to?

[Spryte]

1 minute ago, KSera said:

That’s wild and scary. So glad you’re okay and hope you all have a calm, uneventful night. 
 

Any idea what was in it that you reacted to?

Absolutely no idea. The ingredient list is so short and entirely made of foods I have eaten before, even recently. 

I’m honestly kind of scared to eat anything tomorrow.

38 minutes till I can take more Benadryl. Counting down because the itching has started again. Yikes.

[Kassia]

Oh, that's awful and scary!  I'm sorry and hope the reaction settles down very soon.  I'd be nervous about eating again too.  

[Arcadia]

25 minutes ago, Spryte said:

The ingredient list is so short and entirely made of foods I have eaten before, even recently. 

I’m so sorry but there has been recalls for food that has mislabeled or undeclared allergens.

https://www.fsis.usda.gov/taxonomy/term/14

[Spryte]

18 minutes ago, Arcadia said:

I’m so sorry but there has been recalls for food that has mislabeled or undeclared allergens.

https://www.fsis.usda.gov/taxonomy/term/14

Thanks for that link. 

[Hannah]

That sounds rough Spryte!  I'm glad your kids were on it too and that they are taking care of you.

[Melissa in Australia]

So glad your kids were there to take control of the situation 

[crazyforlatin]

What a scary day! I was reading your reply on the other thread and telling Dd to be more mindful of the 2 systems. She tends to drink a lot of water to dilute the allergen. Part of the reason is probably embarrassment if she is with friends or just trying to avoid bothering us and hoping that with enough liquid her symptoms will subside. 
 

 

 

[Innisfree]

I hope by now you’ve taken more Benadryl and you’re feeling better. What a scary experience! Your kids did well recognizing what was happening and responding appropriately. I know they have good reason to be aware of allergies, but still, at the critical moment they kept their heads and spoke up. Good job.

[Carrie12345]

I’m so sorry that happened! 
One of my sons and one of my daughters have to avoid stevia, which is in the one brand I’m thinking of. Well, ds hasn’t tried stevia afaik, but he reacts to monk fruit and, since dd reacts to both, I just keep him away from it, too.

Hope you’re recovering well!

[Katy]

I’m so sorry. Glad you’re ok. 

[cintinative]

Scary! I'm glad you appear to be recovering--definitely keep an eye out for rebound reactions.

[Spryte]

3 hours ago, Carrie12345 said:

I’m so sorry that happened! 
One of my sons and one of my daughters have to avoid stevia, which is in the one brand I’m thinking of. Well, ds hasn’t tried stevia afaik, but he reacts to monk fruit and, since dd reacts to both, I just keep him away from it, too.

Hope you’re recovering well!

Yes, it has stevia, and while I don’t use it often, stevia is in a green drink that I use every morning and some afternoons. I will avoid it till we have some testing done. Glad to know monk fruit can do the same, I have some here that we haven’t tried yet.

It also had erithritol which I don’t regularly eat but often enough.

Apparently they are not an allergen free facility as I thought. They wash their lines, which we normally avoid because of may contains. I am allergic to shellfish, and they say the product is “free from” but I wonder it might have been cross contamination.

[Soror]

How scary! That's great that the kids were able to help and realize what was going on in the moment.

[CTVKath]

Whoa yikes!!!!!!!!!!! I'm so glad your kids were with you. I hope your body calms down soon and you can get back to regular eating.

[Harriet Vane]

What a rough time! I am glad your kids are so attentive and awesome.

You know reactions can keep flaring 4-6 weeks, right? Keep taking that Benedryl. 

Praying you’re back on your feet soon. Rest and heal in the meantime.

[Spryte]

2 hours ago, Harriet Vane said:

What a rough time! I am glad your kids are so attentive and awesome.

You know reactions can keep flaring 4-6 weeks, right? Keep taking that Benedryl. 

Praying you’re back on your feet soon. Rest and heal in the meantime.

Oh no, I didn’t remember 4-6 weeks. Yikes! I need a refresher on the after-event care. It’s such a blur, from when this happened to the kids semi-regularly.

Thanks.

Edited March 19 by Spryte

[Harriet Vane]

4 hours ago, Spryte said:

Oh no, I didn’t remember 4-6 weeks. Yikes! I need a refresher on the after-event care. It’s such a blur, from when this happened to the kids semi-regularly.

Thanks.

When my daughter had a serious allergic reaction, she continued having hives and flares for five weeks. However, they diminished over time. So the first week she took Benedryl daily. The last week she erupted in hives only twice (if I remember correctly) so she didn't need as much medication. 

[Spryte]

32 minutes ago, Harriet Vane said:

When my daughter had a serious allergic reaction, she continued having hives and flares for five weeks. However, they diminished over time. So the first week she took Benedryl daily. The last week she erupted in hives only twice (if I remember correctly) so she didn't need as much medication. 

Oh, horrible. But no second round of anaphylaxis, I hope?

I stretched to 8 hours (instead of 6) between doses today, and started itching and having an uncomfortable throat sensation, so I think staying at every six hours is good for now. I also have Zyrtec and Pepcid that I take daily, and hope they help, too. Plus the steroids.

Other than no hot showers and staying still for the first few days, I don’t remember much about what to do/expect.

 

[YaelAldrich]

I'm glad you had your doctors-kids with you! I hope you'll not suffer any more reactions/rebounds. 

[Junie]

Not sure how I missed this earlier in the day, but I'm glad that you're okay and so thankful that your kids knew what to do!

[Harriet Vane]

5 hours ago, Spryte said:

Oh, horrible. But no second round of anaphylaxis, I hope?

I stretched to 8 hours (instead of 6) between doses today, and started itching and having an uncomfortable throat sensation, so I think staying at every six hours is good for now. I also have Zyrtec and Pepcid that I take daily, and hope they help, too. Plus the steroids.

Other than no hot showers and staying still for the first few days, I don’t remember much about what to do/expect.

 

Not anaphylaxis. Just hives. 

Check in with your doctor, of course. In our case, they told us to dose routinely the first week and then dose Benedryl as needed. That's how we were able to taper it--the hives came back slower and slower as the weeks passed, so we were able to do fewer doses of Benedryl. 

They may want something different for you due to age and other health conditions. My sister, for example, was on a much stiffer protocol with a whole med cocktail for several months when she had a super-severe reaction. But in her case, it set off severe asthma, so the meds were very targeted at getting her breathing stable. 

[Spryte]

This is ridiculous. Last night I rinsed the last uneaten pudding cup out — just dumped it down the drain and rinsed the bowl, then washed my hands. They started burning immediately, so I washed two more times. Figured with continual Benadryl and steroids, I’d be fine. Had an asthma attack within 30 minutes, woke in the night with hives on my hands. 

Even my kids don’t react to skin contact. They have to eat or inhale their allergens. This is way out of my comfort/knowledge zone. 

 

Edited March 20 by Spryte

[Kassia]

That's horrible! 

[YaelAldrich]

Oh my. I would certainly take one of these puddings into the allergist ASAP. 

[prairiewindmomma]

I’d also call in to the allergist. Do you need a steroid shot to get over the hump? I find when my body freaks out I have all kinds of other cascading reactions to stuff…..but that those may not be permanent triggers/problems. It’s just that my body starts attacking everything. 
 

My contact allergens started in my 40s. They really suck. I am sorry. 

[prairiewindmomma]

Also have you ever done mast cell tryptase testing or urine testing for methyl histamine? I am assuming you have at this point….

[KungFuPanda]

Good grief! I’m glad your kids were allergy alert and talking sense. 
 

Just today a coworker told us that her son called from college and said something like “do you know that some people can eat bananas without them tingling?” Ummmmmmm . . . after further interrogation she decided her son has been allergic to bananas his whole life and never mentioned it til college!!!

[Spryte]

4 minutes ago, KungFuPanda said:

Good grief! I’m glad your kids were allergy alert and talking sense. 
 

Just today a coworker told us that her son called from college and said something like “do you know that some people can eat bananas without them tingling?” Ummmmmmm . . . after further interrogation she decided her son has been allergic to bananas his whole life and never mentioned it til college!!!

Aaack!  Good thing they know now!

I think maybe I figured out what’s made me react — corn starch. I have had many mild, mini reactions since the 90s, and we never knew what caused it. Corn was always on the list of possibilities, but usually I can eat it just fine, so ruled it out. But this reaction — whooooooaaaa. I’ll get tested, but that’s my guess. 

Please tell your friend to encourage to get tested and get an epipen! (And avoid banana!)

I have one kid who is anaphylactic to banana, too. Also, my mom. My brother gets the tingles, so he avoids them. It must not be uncommon!

My doc called and put me in a huge Benadryl dose, doubled the Zyrtec, increased my inhaler. I’m probably incoherent at this point, and should not be typing! Oops.

[YaelAldrich]

My allergy subscribes to the bucket idea. Meaning when you filled up your bucket with the allergen any little thing can tip it over the edge spill over and cause a reaction. So now that you've given yourself a hefty dose of whatever your allergen is, any little extra thing that would not normally be terribly reactive or just push you over the edge over and over again.

I hope it's not cornstarch because so many gluten-free things have it in it. As well as just regular food.

[Spryte]

Yes, corn derivatives are in everything! I looked at the list and it’s daunting. I really hope it’s not corn. It’s even in some types of sugar and table salt. I don’t know how to avoid it. [sob]

My kids’ allergist uses the bucket concept a lot, too. I’m being very careful right now, since I am not sure of the cause. Only eating whole ingredients plain. So small bits of beef, steamed veggies, plain rice, hard boiled eggs. It’s bland, but I’m not hungry anyway.

My DH will fly home from Germany tomorrow, and I plan to hibernate while the Benadryl does its job.

@prairiewindmomma I will ask about the steroid shot. That’s a good idea.

[prairiewindmomma]

If you want to get weird with it, some commercial corn starch is made by soaking the endosperm of corn into sulfurous acid. If you can handle the proteins of corn just fine, I would lean towards you having sulfite reaction.

If you get a true corn allergy confirmed, be careful…lots of pills, including name brand Zyrtec, use corn starch as a filler. Claritin uses it as a filler also (and also contains lactose).

ETA: recipe for sulfite free homemade corn starch if you need it: 

 

Edited March 20 by prairiewindmomma

[Spryte]

Wow, sulfites could explain past mystery reactions, too.

Edited March 20 by Spryte
Autocorrect

[KSera]

3 hours ago, Spryte said:

think maybe I figured out what’s made me react — corn starch. I have had many mild, mini reactions since the 90s, and we never knew what caused it. Corn was always on the list of possibilities, but usually I can eat it just fine, so ruled it out. But this reaction — whooooooaaaa. I’ll get tested, but that’s my guess. 

Fwiw, developing new/more serious allergies after having Covid has been commonly reported. There’s a lot of histamine related stuff that happens. 

[Spryte]

Well, things progressed quickly again, and I had another big event. This time I used the epipen and called 911. 

They just monitored me, mostly. I had already done All The Things, the meds they would have given me.

I’m home again. They did not keep me 4-6 hours, just a few. They are packed tonight, and I was doing well. Even responded to a post from the bed. lol.

Proud of my brave kids who offered to epi me when I was shaking, and stayed calm. (I did epi myself)

I’m fried. But a big fan of epinephrine now. It worked fast, and when it did — I felt better than I had in a few days. 

ER doc thinks it was the second, contact exposure.

Edited March 21 by Spryte

[KSera]

Gosh, Spryte, I'm so sorry. What a rough time of it. I hope this is the end of the reactions for you and things settle down and you can determine what caused it and not encounter it again.

[Arcadia]

Our school district made all the kindergarten teachers be trained in using epipens when DS19 was in kindergarten (2009). His kindergarten classmate has a nut allergy. The principal told parents to refrain from sending PBJ sandwiches as part of school lunch if possible as there were quite a few students with peanut and/or nut allergy. 
We have a family friend who is allergic to sulfur dioxide. So we have to read ingredient lists when offering him preserved/dried fruits.

[Spryte]

9 hours ago, prairiewindmomma said:

Also have you ever done mast cell tryptase testing or urine testing for methyl histamine? I am assuming you have at this point….

I missed responding to this.Thank you. I have not. Mast Cell was mentioned by my regular doc two days before lockdowns started in 2020. Then elder care and other issues were more pressing and it fell onto the back burner. 

Then it was mentioned again by my GI doc in 2021.

So I’ll be looking into that when I see the allergist, too. 

[KSera]

9 minutes ago, Spryte said:

Mast Cell was mentioned by my regular doc

Did you say you’re already taking famotidine along with your other histamine blockers? That’s a good idea if so, and might be worth asking if you can add, if not. 

[Spryte]

21 minutes ago, KSera said:

Did you say you’re already taking famotidine along with your other histamine blockers? That’s a good idea if so, and might be worth asking if you can add, if not. 

Yes, good idea —  I do take it daily. I have that plus Zyrtec on board anyway, so hopefully they helped some. Doc had me double the Zyrtec for now.

 

 

[crazyforlatin]

@Spryte may I ask, each time you have an allergic episode, do you use one epipen or 2? And if 2, how far in between do you spread each shot? 
 

I hope you are feeling better and resting. Keep us posted please. I had no idea that there could be recurrence. 

[Spryte]

3 hours ago, crazyforlatin said:

@Spryte may I ask, each time you have an allergic episode, do you use one epipen or 2? And if 2, how far in between do you spread each shot? 
 

I hope you are feeling better and resting. Keep us posted please. I had no idea that there could be recurrence. 

Our family’s allergist has us wait 15 minutes after the first one, and if things are not visibly improving, use the second. And always call 911 immediately after the first one. When we are on long flights, she sends us with more than two. We give an albuterol inhaler with the epis, too.

I used just one, and by the time the EMTs arrived was significantly better.

If I wasn’t already taking everything, we might also give Pepcid and Benadryl.

I always worry for rebound between 8 - 12 hours, but I just read on FARE (food allergy group) and the ER doc said you need to watch for 1 - 72 hours. The Monday ER doc said 8 - 12, maybe something changed, I’m not sure.
 
 

Edited March 21 by Spryte

[prairiewindmomma]

Some people are more prone to rebound. We are 72 hour people, personally. 

[TravelingChris]

 I don't have time to read other people's resbounces.But I want to tell you that if you had a tick bite, You may actually be having a delayed  anaphylaxis Reaction.  It would be a reaction to mammal products, And those reactions can happen twelve to twenty four hours later. I'm on heavy meds right now.So can't remember the name exactly but my son has this problem. And they used to think it was only one kind of tick that could carry it.However, they've now found the same problem.Some people in Europe and Asia too.

Also, our family also has mast Issues which cause Us to sometimes have a reaction and other times not to have a reaction to items we are allergic to. Basically depends on the load of allergies that day. But. We do get anaphylaxis. And I found out from a doctor who should be getting a nobel price that mast tests are only reliable fifty percent of the time. Plus mast cell issues are linked to POTS and other disautonomias, Sjogren's, Lupus, high altitude issues, and strange osteoporosis or osteopenia too.

 

 

 

 

 

 

 

 

 

[prairiewindmomma]

Agreeing with Chris—Systemic mastocytosis is linked to bone density issues….something like a 40-50% correlation. If you end up with that dx it’s something to track for sure. It should also put RA and other AI on your radar. All of those are kind of woven strands in general cytokine dysfunction.

[Spryte]

Thank you, @TravelingChris. I have had tick bites, and we did eat red meat this week. Also, I have AI issues and mast cell has been mentioned by two docs as something I need to investigate. I’ll see a new allergist tomorrow and we will go from there. Thank you for suggesting ideas to look into,

I will make a list of everything to track, and get started with ruling things out. @prairiewindmomma Is an allergist/immunologist sufficient or should I schedule with a different type of doc?

[prairiewindmomma]

You want someone who is up on mast cell disease. We’ve moved enough that I have seen a variety of doctors. The label seems to matter less than what they actually know and do. Some allergist/immunologists have been decent and others arent. Honestly, I’d ask GI or your AI dr for a referral if you dont have a solid feeling about the provider you are going to see. 

[prairiewindmomma]

Also, I would begin the conversation with, “I have had two doctors (and name them and their disciplines) tell me I need to investigate mast cell disease.”