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Anaphylaxis?

ScottTriGuy

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On Sunday I had a 'bad patch' - probably the 6th-ish time it has happened - I don't know what it is but I'm suspecting anaphylaxis.

Sunday morning (may or may not be relevant: 2 hours after eating a 2 bite pastry) I suddenly felt very sick, within 60 seconds I was on the floor, fetal position, feeling faint with something major going wrong in my body.

Within perhaps 2 minutes my arms started to go numb / tingly, followed a couple of minutes later by my legs - during this time my breathing was rapid as I struggled for enough air.

Then all my muscles tightened / cramped up, vibrating, became painful - my breathing became more rapid and laboured.

I was cold and shivering.

I think 20 minutes passed before my muscles started to relax - breathing returned to normal slow deep breathes.

A few minutes later I was able to sit up, then a few minutes later sit on a chair, then a few minutes later I made it 10 metres to the sofa to be horizontal. Felt nauseous and tired for the rest of the day. Still feeling nauseous on and off.

As I laid on the floor, I tried to figure out what was going on - this is what it 'felt' like:

- all the blood went to my intestines (or stopped flowing) --> feeling faint
- the numbness / tingling in my arms and then also legs was lack of oxygen getting to the tissues
- the laboured breathing was my body trying to get more oxygen for my muscles
- the muscle tightening / cramping resulted from lack of oxygen
- our lack of good RBC deformability exacerbated the problem, as peripheral tissues get less oxygen

Each time I've had one of these 'bad patches' the only thing I could attribute it to was a pastry - that is the only pattern I've been able to discern.

So if I'm having a reaction to something in some pastries, am I having an anaphylaxis reaction? Should I talk to my doc about getting an epi pen?

My previous experience with anaphylaxis was a few times about 15 mins after finishing a triathlon - my throat would swell up, but only for a few minutes, enough time to get to the paramedics so they could monitor me. And no other symptoms - nothing like my 'bad patches'.

Curious if others have had this experience too.
 

Gingergrrl

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@ScottTriGuy I just saw your post and am so sorry this happened to you on Sunday :( :hug: ... There are many different charts with the stages of anaphylaxis and some divide it into three stages but most seem to divide it into four stages. I copied one of the more common charts below so you can compare it to your symptoms.

Stage One can be only skin related symptoms (itching, hives, redness/ flushing, angiodema, etc).

Stage Two usually has some skin symptoms but also has GI symptoms (nausea, sharp stomach pain, diarrhea, etc) plus respiratory symptoms (shortness of breath, runny nose, phlegm in throat, head stuffed up, itchiness in throat, etc), and also has tachycardia and drop in blood pressure.

Stage Three has some combination of everything from Stage Two plus throat swelling/narrowing, bronchospasm, and sometimes cyanosis (fingers and toes turning blue/losing color), and can progress to the body going into shock.

Stage Four often ends in death when the body goes into respiratory arrest/ cardiac arrest and throat closes up so not getting any oxygen to the brain/body.

In 2015, I reached the point that I was having Stage Two and/or Stage Three anaphylaxis to all food but water and ended up in the hospital. Thank God, I never experienced Stage Four.

1566962036419.png

Each time I've had one of these 'bad patches' the only thing I could attribute it to was a pastry - that is the only pattern I've been able to discern.
Do you mean that every single time this has happened to you it was immediately after eating a pastry? Do you know the ingredients in the pastry and were they always the same where you can try to narrow it down? Did the pastry have any artificial food dyes? My very first episode of anaphylaxis in early 2015 was caused by "Yellow #5" dye also known as "Tartrazine". I have never had it since and will avoid it for the rest of my life. It is often in butter (unless you buy organic butter).

So if I'm having a reaction to something in some pastries, am I having an anaphylaxis reaction? Should I talk to my doc about getting an epi pen?
I would definitely talk to your doctor about getting an EpiPen and I see no downside to this. I will keep one in my purse for the rest of my life. You also might want to have a "rescue med" (a strong H1 antihistamine) like Benadryl (Diphenhydramine) or Atarax (Hydroxyzine) for reactions that are serious but an EpiPen is not needed.

My previous experience with anaphylaxis was a few times about 15 mins after finishing a triathlon - my throat would swell up, but only for a few minutes, enough time to get to the paramedics so they could monitor me. And no other symptoms - nothing like my 'bad patches'.
Exercise is a known trigger of anaphylaxis in people with MCAS. It is not just food and there are all types of triggers. If your throat closed up to the point that paramedics were called, I would definitely carry an EpiPen.

How are you feeling today? :hug:
 

Judee

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I don't have enough experience with this to give good input to say if it is anaphylaxis (I'm glad @Gingergrrl posted) but I will say I am also wondering if you could be having hypoglycemia. Some of the symptoms sound similar to what I experience and if it follows eating something sugary, your body may be overcompensating with too much insulin. If you could find a way to check your blood sugar afterward to see if it is dropping significantly that could be a clue.

Either way both situations are bad and something to discuss with your doctor asap.
 

gregh286

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Yes most likely pastry hitting the colon and triggering immune response.
I have had angioedema 25 years and get similar albeit less severe bouts but always a few hours after a trigger item.
BTW gluten is my number one offender...barley and other grains after.
H1 blockers keeps.it less frequent.
See GP you better get proper imunologist advice.
It's scary alright....think it's a heart attack.
 

Alvin2

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So sorry to hear about this :(
I don't know if its a good idea to try the pastry again in a controlled setting to see if thats the cause?
 
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ScottTriGuy

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Geez @Gingergrrl I'm amazed you're still alive...testament to your tenacity. Thanks for the handy chart, I've previously experienced the vomiting / defecation of stage 3, but not this most recent time...I was surprised it didn't happen.

Do you know the ingredients in the pastry and were they always the same where you can try to narrow it down? Did the pastry have any artificial food dyes? My very first episode of anaphylaxis in early 2015 was caused by "Yellow #5" dye also known as "Tartrazine"
It has never been the same pastry, and they have all been bought from various retailers / restaurants, so I can't even compare ingredient lists. I've eaten a lot of butter with no problems, so I think I can scratch Yellow #5 off my list.

I would definitely talk to your doctor about getting an EpiPen and I see no downside to this. I will keep one in my purse for the rest of my life. You also might want to have a "rescue med" (a strong H1 antihistamine) like Benadryl (Diphenhydramine) or Atarax (Hydroxyzine) for reactions that are serious but an EpiPen is not needed.
Good to know, I've been meaning to try Benadryl and its ilk, this gives me another reason.

hypoglycemia - Some of the symptoms sound similar to what I experience and if it follows eating something sugary, your body may be overcompensating with too much insulin. If you could find a way to check your blood sugar afterward to see if it is dropping significantly that could be a clue.
hhmmm, I did have a sugary drink (French Vanilla, like Hot Chocolate, so lots of sugar) with the pastry - but I've had that drink many, many times before without impact - although now I only have it about once a month - and this pastry was a new product so I'd never tried it before (or will again).

Just checked hypoglycemia symptoms, and don't see the breathing problems and muscle cramping, so it seems less likely, but checking my blood sugar after an episode seems like an easy check.

I don't know if its a good idea to try the pastry again in a controlled setting to see if thats the cause?
To be honest, it was too intense for me to risk a repeat, maybe with medical help at the ready...but I have little to no faith in health care, too many medical errors happening even with the best of intentions.
 

ScottTriGuy

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most likely pastry hitting the colon and triggering immune response.
I have had angioedema 25 years and get similar albeit less severe bouts but always a few hours after a trigger item.
BTW gluten is my number one offender...barley and other grains after.
H1 blockers keeps.it less frequent.
See GP you better get proper imunologist advice.
That's my 'gut' feeling too - I had to google 'angiodema', but I experience that too, didn't know that's what it was called.
 

Alvin2

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To be honest, it was too intense for me to risk a repeat, maybe with medical help at the ready...but I have little to no faith in health care, too many medical errors happening even with the best of intentions.
Understood. As i as writing it i was thinking to myself but what would be a controlled way to test it, its not like they will let you check in to emergency with no symptoms and no doctor will let you sit around for a day beyond your 15 minute appointment while you try something
 

rel8ted

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If you have ever been bitten by a tick, consider alpha gal. It causes delayed anaphylaxis bc the allergy is to the sugar, not the protein. If you have this, you can react to fumes, mammal by products as well as mammal flesh itself. The pastry likely had lard or butter which can send people with alpha gal into a reaction.
https://www.med.unc.edu/medicine/news/chairs-corner/podcast/alpha-gal/

https://www.c-ville.com/ticked-off-uva-physician-connects-dots-perplexing-allergy-meat/

I am sensitive to cross contamination from mammal meats & am becoming sensitive to fumes. Have to come inside when my neighbor grills.

It is possible to react to some mammal products, but not others. It is not very well understood & triggers can change.

I am blessed with both MCAS & alpha gal, so eating is always an interesting experience🙄
 
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percyval577

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Could it be that your bad patch was related to the time before you had eaten the pastry, meaning not having eaten for some longer time (maybe as it was morning)? And maybe that it was related to the small amount of this food?

I have this experience, with chocolate (though not that extended):

Normally I can eat chocolate without problems, also the sugar comes into the blood slowly enough, maybe not as slowly than the sugar converted from carbs in bread, but maybe almost comparable (?).

Once I had eaten for more than say 24h´s nothing, as I do sometimes. Rather due to circumstances I then ate a bar of chocolate, and after an hour my energy crashed down, sweating, shaking, feeling cold, snowfall, feeling faint. Two years later the whole situation appeared for a second time.

Recently had a related experience (to far lesser degree) from a small amount of chocolate, after some hours not having eaten, and here in a comparable situation a larger amount doesn´t cause any problems.


This experiences, I guess, should be normal, maybe you displayed an exaggeration due to the disease? (??)
 
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Gingergrrl

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Geez @Gingergrrl I'm amazed you're still alive...testament to your tenacity. Thanks for the handy chart, I've previously experienced the vomiting / defecation of stage 3, but not this most recent time...I was surprised it didn't happen.
Thanks @ScottTriGuy :hug: I'm glad the chart was helpful b/c if you can match your symptoms to one of the stages than you know if you had anaphylaxis or not. Although it does not tell you WHY you had it or what the trigger was.

It has never been the same pastry, and they have all been bought from various retailers / restaurants, so I can't even compare ingredient lists. I've eaten a lot of butter with no problems, so I think I can scratch Yellow #5 off my list.
Even though it has never been the same pastry, has every single episode been with some kind of pastry? If so, to me that would rule out hypoglycemia or electrolyte imbalance or things that would occur at other times (vs. only after eating pastry).

Also, I would not totally rule out that the pastry had some kind of dye or preservative that you reacted to (unless it was from an organic bakery or store). For example, all products at Whole Foods are dye-free, preservative free, and only use natural colors and flavors. So even if they have 20 different kinds of butter, none would have yellow #5 dye (vs. many restaurants use it in butters, cheeses, etc, to make them look more yellow).

I don't eat pastry but I could easily see them using dyes to make the colors brighter. I would try to compare the ingredients in the pastries with the various episodes where this happened to you.

Good to know, I've been meaning to try Benadryl and its ilk, this gives me another reason.
If you get Benadryl, I would get the "dye free" version just to be safe.

To be honest, it was too intense for me to risk a repeat, maybe with medical help at the ready...but I have little to no faith in health care, too many medical errors happening even with the best of intentions.
I agree and would not intentionally try to trigger it vs. be prepared with an antihistamine and EpiPen should it happen again.

I am blessed with both MCAS & alpha gal, so eating is always an interesting experience🙄
Ugh... I am so sorry @rel8ted :( :hug:

You need qualified advice about this as making a mistake in diagnosis could be fatal.
I agree and I would see an allergist/ immunologist (if this is an option). But I also see no downside in getting an anti-histamine and EpiPen. My MCAS specialist said that I should use the EpiPen if I have an episode in which my throat is narrowing/ closing and I can't speak and it is like breathing through a straw where you are just making a whistling noise.

But for lesser episodes, an H1 anti-histamine is sufficient (for me) because I also have a history of POTS and I do not do well with Epi so my goal is to avoid it! But in prior episodes, I took the H1 anti-histamine very quickly to prevent it from getting worse. I always carry Atarax in my purse (which for me works better than Benadryl) in addition to the EpiPen.
 

ScottTriGuy

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If you get Benadryl, I would get the "dye free" version just to be safe.
Your wisdom...priceless.

the chart was helpful b/c if you can match your symptoms to one of the stages than you know if you had anaphylaxis or not
I more I consider the chart the more I don't think I'm having anaphylaxis - I don't have the skin stuff (during at episode), and I don't have the throat tightening I associate with anaphylaxis.

My other symptoms with my muscles numbing, tingling, tightening doesn't seem to fit.

I also had very dry mouth by the end. And the constant tinnitus got much louder during.

Any way, I'll go see an allergist and see how helpful they are.
 

Sarah94

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Understood. As i as writing it i was thinking to myself but what would be a controlled way to test it, its not like they will let you check in to emergency with no symptoms and no doctor will let you sit around for a day beyond your 15 minute appointment while you try something
Actually you can get 'allergy challenges' where they test potential allergens on you in a safe hospital setting.

I was dx with severe peanut allergy when I was small. My sister was a baby at the time and they told us not to let her have peanuts, in case she was allergic too, until she was old enough to do an 'allergy challenge'. Then when she was like 3 or 4 years olD, she and my mum went to hospital for a day to do the 'peanut challenge' - started with a tiny bit of peanut oil, gradually increased up to eating 5 peanuts, and once she did that without an allergic reaction, they concluded she was not allergic.

This was in the UK.

They would probably want to do a skin prick allergy test on you before doing an allergy challenge.

But if there's a possibility of anaphylaxis reaction, the challenge test may be too dangerous, because anaphylaxis can be really dangerous even with immediate medical help on hand.
 

ScottTriGuy

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Just wanted to say sorry to hear that you went through this episode right after the high of participating in the Canadian research announcement last week. It seems one good thing happens but then something comes along that knocks us down. So frustrating.

Thanks Wigglethemouse - way back when, in the first few years of living with HIV, I realized (or at least told myself) that we have to have 'bad' days in order to recognize and appreciate the 'good' days.

Though...harder to remember the mantra on bad days, and easier to remember it on good days.
 

Inara

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Scott, I was thinking about this for some days. I can't come to grips with it.

What kind of pastry was it exactly? How many did you eat? Just one? Do you eat carbohydrates regularly, or do you do some lowcarb or whatever diet?

Can you describe the muscle cramps more exactly? Were it cramps, or tightening, or spasms, or sth like in Paramyotonia or...? Can you describe the vibrating more? Was it like when you do resistance training and reached a point shortly before exhaustion where the muscles start to tremble or...?

Is your breathing in any other way affected than increased pulse? Do your lungs feel tight, or normal?

Were you training before eating? - Ah, you were traveling, i.e. exertion.

I may be biased right now (because I read about that stuff), but I'm wondering if electrolytes may play a role here. I've recently learnt that insuline changes potassium levels from extra- to intracellular. Maybe you have lowish potassium levels, and after traveling they were a bit lower, and after eating carbohydrates it got even lower, causing your symptoms? (Or higher?) Just thinking...I don't know.

Whatever...it doesn't sound like anaphylaxis (that doesn't mean anything; I've gotten critical to "typical symptoms" lists)...but I can't know for sure, and checking it is certainly a good idea.
 
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Gingergrrl

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Your wisdom...priceless.
That's what I am here for :nerd: ...

But seriously, Benadryl pills (in the US) have an FD&C red dye which is insane for anyone who is allergic to dyes b/c Benadryl needs to be totally allergen free. There is also a "dye free Benadryl" but I can't understand why they continue to make both versions? It is like theater of the absurd.

I more I consider the chart the more I don't think I'm having anaphylaxis - I don't have the skin stuff (during at episode), and I don't have the throat tightening I associate with anaphylaxis.
I wanted to clarify re: the chart that it is absolutely NOT mandatory to have skin symptoms with anaphylaxis. Most people do have some kind of skin symptom but if a person meets the criteria for Stage 2 without the skin symptoms, they are still having anaphylaxis.

In my very first episode (to the yellow food dye), I had hives in addition to my face, knees, and elbows turning bright red like a lobster and my skin was very flushed/hot and very itchy. But that was the only episode in which I got hives. I had hundreds more episodes over the next 1.5 years but never again got hives (although I almost always had the other skin symptoms as part of it like the facial redness/flushing and itching).

My other symptoms with my muscles numbing, tingling, tightening doesn't seem to fit.
I agree that doesn't quite fit but in a histamine surge, people get all kinds of different symptoms that don't seem to fit. Most of my episodes of anaphylaxis (in 2015) ended with my teeth chattering, full body shaking, and confusion and I could not have given myself an EpiPen at that point.

Any way, I'll go see an allergist and see how helpful they are.
It's really a crap-shoot if they will be helpful or not but I would do it if you can.

Actually you can get 'allergy challenges' where they test potential allergens on you in a safe hospital setting.
You are right that they can definitely do allergy testing in the hospital but it is usually for true IgE allergies (like peanuts, shell fish, etc) vs. mast cell issues. And I am not saying that Scott's issue was MCAS related and have no idea. But in MCAS reactions (in which too much histamine caused mast cells to degranulate), it is not always triggered by the same food like an IgE allergy. A person could react to something one time and then not react to it another time. There are so many factors like if the food is not fresh so more histamine has had a chance to build up. I apologize that I am probably not explaining this very well!

What kind of pastry was it exactly? How many did you eat? Just one?
I was curious as well.

Whatever...it doesn't sound like anaphylaxis (that doesn't mean anything; I've gotten critical to "typical symptoms" lists)...but I can't know for sure, and checking it is certainly a good idea.
Anaphylaxis is so tricky b/c it does not always present the same way (the way that heart attacks can present differently in different people). But the end stages in which the throat is closing up and the person goes into shock is the same.