Invest in ME Conference 12: First Class in Every Way
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Just had my first serious allergic reaction

Discussion in 'Mast Cell Disorders/Mastocytosis' started by bspg, Aug 4, 2017.

  1. bspg

    bspg Plant Queen

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    I don't know what is going on but the last two weeks my body has decided to disagree with so many things. It's never done this before and it's freaking me out.

    Today, after drinking a new protein shake mix (new to me, but all it's ingredients I'd had before), I started feeling really hot around my neck, ears, and the backs of my arms. When I got to the bathroom to look in the mirror, I was covered in hives all over my body and I immediately panicked.

    I wasn't sure what to do and I was alone so I called 911. The dispatcher was great and stayed with me until help arrived. My heart rate was ~190 (my normal resting rate is 65) and I was shaking really badly. The fire dept. arrived at my house less than 5 minutes later.

    I was wheeled out to the ambulance soon after, with the entire neighborhood watching. My adorable neighbors were waving and making heart signs with their hands and looking very worried. It was all kind of surreal. :alien:

    I was given IV benedryl, solumedrol, zofran, and saline and my hives were gone shortly after arriving at the hospital. The nurse and doctor were great and gave me a lot of info, 2 EpiPens, and a few days worth of prednisone to keep things calmed down.

    I have no idea what caused the reaction, as there was nothing new in the shake that I've not consumed before. This makes me scared to eat things now and depressed to think that my body is starting to react to things this way. :(

    I guess it's time for an elimination diet, which I've thought about doing but never done before. Ughhhhh.:aghhh:
     
  2. Sushi

    Sushi Senior Member Albuquerque

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    I'm so glad you called 911! It is a scary thing to do but it is scarier not to do it. Now with the Epi pens at least you have some "insurance" until you can figure more out.
     
  3. bspg

    bspg Plant Queen

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    @Sushi I felt so weird calling 911! I didn't want to do it but I honestly had no idea what to do because I've never had an allergic reaction before. Thankfully medicaid covers ambulance and ER care so I didn't have to worry about $$$ when making the call.
     
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  4. Sushi

    Sushi Senior Member Albuquerque

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    I know how you feel. I swore I'd never do it, but had to also a few years ago. I called my doc and she said to call an ambulance. My experience, like yours, was very good both in the ambulance and at the hospital. Of course if I'd told them I was experiencing ME/CFS symptoms, it might have gone differently. But like you, it was a different problem, though perhaps related.
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    @bsbg I am so sorry this happened to you and your post literally brought me back to 2015 when I was having anaphylaxis until I reached the point of being allergic to all food and could only tolerate water and was hospitalized. The good news is that my MCAS is now in remission from IVIG and I can eat all foods and tolerate all smells. The only thing I continue to avoid is food dyes.

    Did the protein shake have any kind of dye in it? Either an FD&C or "AZO" dye or even a natural dye like "carmine" or "annatto"? If it was a histamine or MCAS reaction (vs. a true IgE allergy), then your body is acting as if it is allergic to the particular food or ingredient but you actually are not. The freshness also matters re: histamine so if the shake was not fresh or had been made and then sat in the fridge for even 10-12 hrs that can be too much. (I can eat leftovers now but back in 2015, everything had to be fresh or frozen).

    I am so glad you have the EpiPens. I have never had to use mine but will carry it in my purse for the rest of my life. Are you taking a mast cell stabilizer (like Ketotefin) and do you have a rescue med? Mine was Atarax but for most people it is Benadryl.

    If we assume this is MCAS (which is my guess), then I would figure out a med protocol with your doctor that you would take 30-60 min before eating as well as a rescue med (for situations that you get a histamine surge but not at the EpiPen level). I would also try a low histamine diet. The one I did in 2015 was the SIGHI diet from Switzerland but they have it in English on their website. It rates foods from 0-3 re: both histamine content and also histamine liberators that cause mast cell degranulation. There are very few MCAS specialists in the country but do you know if there is one in your area?

    If not MCAS, then you had a true IgE reaction to something in that shake that you will need to avoid for the rest of your life.
     
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  6. bspg

    bspg Plant Queen

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    Thanks @Gingergrrl. My health situation seems to be paralleling yours in an eery way and I really hope I'm not developing severe food allergies. I'm so glad the IVIG has kicked your MCAS into remission though. That's fantastic. :)

    As far as I can tell, the protein shake does not have any dyes or additives. It does have many sprouted GF grains and seeds, but I've never had a problem with those before. It is a powdered mix and I blended it with almond milk and a bit of peanut butter (I drank it right away). I consume PB and almond milk regularly and have never had a problem.

    658010116039-facts.png

    Me too. I hope I never have to use mine either but I better knowing I have them. Oddly, I just started ketotifen yesterday. I'm starting slow because it's sedating so I took 1mg yesterday in 3 divided doses. I took another 1/2mg this morning.

    I supposed the ketotifen could've caused the reaction but that seems so strange. The reaction happened about 20 mins after consuming the shake so I figured that was it. Maybe I'm actually allergic to ketotifen though Wtf?! :eek:

    I don't have a "rescue" med because this has never happened before but I have a giant bottle of benedryl and some atarax, as they've been prescribed to me for sleep!

    I also have claritin, Zyrtec, allegra, and zantac. I take the claritin everyday. Zyrtec gives me insomnia and headaches so I don't take it. When I was taking allegra and zantac I had a different allergic reaction (itchy all over, runny nose, watering eyes) so I stopped those too. I was also trying an antibiotic at the time so I have no idea what was causing the reaction.

    This is good to know, thank you for the info. I'll look up their website. I looked up MCAS specialists on Dr. Afrin's site (I think?) and got two results for a city that's about an hour away. I think they're both researchers though so I'm not sure if they actually see patients.
     
    Last edited: Aug 4, 2017
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  7. Gingergrrl

    Gingergrrl Senior Member

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    @bspg That shake has a TON of ingredients in it so it is impossible to even guess what you might have reacted to. When I was adding foods back in (in 2015) I was doing all single item foods (like a sweet potato or an apple or a carrot, etc) and nothing that had more than one ingredient until much later.

    One thing I was very reactive to until fairly recently was anything with carageenan (from seaweed) and your shake has chlorella in case this is the culprit. I can eat things with it now but I keep it in moderation. Your shake also has guar gum and carob bean gum in case those are the problem.

    I would avoid stuff like this (with so many items) until you have the allergic reactions under good control.
     
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  8. bspg

    bspg Plant Queen

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    All this crap has happened suddenly in the last two weeks so my doctor said to stop everything new and just take my regular meds and ketotifen. No Allegra, zantac, zyrtec, or antibiotics.

    That was all fine and dandy and then today happened so I really have no idea what to think.
     
  9. bspg

    bspg Plant Queen

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    I guess it's time to do the same thing with food now. Figures because my boyfriend just went to the store yesterday and brought home all the foods we normally eat. :(
     
  10. Gingergrrl

    Gingergrrl Senior Member

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    I think it is unlikely to be the Ketotefin especially since it happened 20 min after drinking the shake. I assume the Ketotefin is compounded without any dyes or weird fillers?

    I agree re: the antibiotics and not taking so many MCAS meds at once (and even the allergy meds can have dyes or fillers that people react to). But I assume you'll be adding in an H1 blocker? I use a dye-free version of Zyrtec for my H1 blocker.

    Bummer and it was hard watching my family eat things back in 2015 but I got to the point that no food was worth the risk of anaphylaxis to me. But in the beginning, it was very challenging.
     
  11. bspg

    bspg Plant Queen

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    This is what I thought too. And yes, the ketotifen is in gel caps with microcrystalline cellulose.

    Yes, I think eventually my doctor wants me on an H1 & H2 blocker + ketotifen but not until I'm stabilized.

    I'm sure. I've done diets before to lose weight and it always sucked seeing people eat things I was avoiding. I just feel so overwhelmed now because I don't know what I reacted to and what is safe to eat.
     
  12. bspg

    bspg Plant Queen

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    FWIW, does anyone think formal allergy testing would be useful in this situation? I know it's rumored to not be very accurate so I'm not sure if It'd be helpful.
     
  13. kelly8

    kelly8

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    @bspg , formal allergy testing will not be helpful if it is MCAS. I've had it done and had barely anything come back positive and yet on an elimination diet I was allergic to a ton. My mcas Dr is not good on diet which is frustrating. Elimination diets stink.:bang-head:
     
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  14. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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  15. antherder

    antherder a.k.a. Princess Dauer, Nematode Nation

    @bspg, sorry to hear you had to go through this, but glad to hear help was at hand.

    I agree that the enzymes are a red flag, I think(?) it depends what they are derived from eg, a fungus, which might be a problem for some people.
     
  16. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    Yes I agree with concerns about the aspergillopepsin. These enzymes are derived from processes involving genetic modification and while I am in no way qualified to evaluate the benefits and risks of this I try to be aware of it.
     
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  17. ryan31337

    ryan31337 Senior Member

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    I've heard reports from others that there's sometimes an initial worsening before improvement on mast cell stabilisers - advice is usually a very tiny initial dose and slow increase over weeks/months.

    I've had temporary worsening (reactive to previously safe food, thankfully never ana) on Nalcrom and Montelukast.
     
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  18. wonderoushope

    wonderoushope Senior Member

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    Could it be possible that you could have got a delayed reaction, so it might have been something other than the shake?

    Like for example, I put on sunscreen the evening before and had no symptoms and then woke up with hives and puffy face the next day.

    Anyway, different processing can be used with the same ingredients or the production line can sometimes be contaminated with other products. Also, manufacturers can sort of get away with not listing certain ingredients/additives with work arounds.
     
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  19. bspg

    bspg Plant Queen

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    Thanks @GreyOwl and @antherder. This is really helpful! I definitely won't be consuming the mix again and I'm going to be extra careful when consuming anything that was in it: seeds, beans, etc. I'll probably stay away from enzymes all together unless they're warranted and recommended by a doctor.

    This is also good to know. I started with full doses of the antihistamines when I tried them, but was only doing a 1/3 mg of ketotifen. How long did you get worse on your meds before getting better? What time frame did you use to titrate up to full doses?

    It's certainly possible. I ate a kashi bar and a banana yesterday morning. I've never had problems with those foods either though.
     
  20. ryan31337

    ryan31337 Senior Member

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    Its hard to say as my food reactions seem to lower the threshold for further reactions for a period of time. Not sure what is the initial insult and what is just resultant aggravation. Days to weeks rather than weeks to months though.

    For the Nalcrom I started with 50mg before dinner in the evening (when I am most likely to react). I'm adding another 50mg to other meal-times every week or so depending on how I am. Target will be 200mg 4x daily, which will take a few months at least.
     

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