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Shaking during allergic reactions

so I usually get mild anaphylactic reactions that cause me to have trouble breathing, makes my blood pressure drop, etc. But recently I’ve noticed that my hands start shaking and I can feel what I can only describe as muscle spasms (you know, when you can feel your arm shaking but you can’t see it) in my arms and sometimes it happens is my legs as well. I only developed my allergy a few years ago, so someone who has had more experience dealing with allergies: is this normal?

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  • Melissa G

    Hi, Thenerdybunch! Welcome to AAFA! 

    The shakes are probably coming from your blood pressure dropping. Have you discussed this with your dr? My youngest gets the shakes when her bp is too low. 

    What are you allergic to? Do you have an allergy action plan? Do you carry an epi-pen?

  • TheNerdyBunch

    I’m allergic to dairy, eggs and gluten. I do have an epi pen but my reactions are so frequent that I avoid using it unless it’s absolutley necessary (I’ve only had to use it twice this year). I have not told my doctor because I wasn’t sure if it was relevant to my allergies or not.

  • Melissa G

    Yikes, why are your reactions so frequent? How are you becoming in contact with the foods?

  • TheNerdyBunch

    I’m allergic to so many things that at first it was because we didn’t know what I was allergic to, now it’s because either 1) people think I’m kidding about my allergies and I’m just on a diet or 2) it comes into contact with one of my allergens because they’re so common 

  • LK

    Welcome!    

    I have severe asthma but no food allergies, but I have learned from managing my asthma that even if I don't think a piece of information, no matter how small or seemingly unrelated, is important to tell my doctor, I need to tell him about it.  The doctors can see connections between our symptoms that we do not.  It would be a really good idea to have a long talk with your doctor about all your concerns including the muscle tremors.  Only then can the doctor have a full picture of what you are having to deal with on a regular basis.  Please keep us updated on how you are doing and what your doctor suggests!

  • Kathy P

    Hi TheNerdyBunch!  Gluten, dairy and egg are what I avoid as well and it can definitely be a challenge! What situations are you finding the hardest – reading labels to find safe brands of foods at the grocery, eating at restaurants, foods that other people (friends / family) are preparing for you? Our Kids With Food Allergists division has great resources on label reading and avoiding cross contamination - 

  • Melissa G

    kathy, gave you a great resource!

    I understand, I have to children with food allergies. My son is allergic to nuts and my youngest daughter has multiple food allergies, she is strictly tube fed. When she was younger, I couldn't trust others to cook for her because they truly did not understand cross-contamination. 

    hugs!

  • TheNerdyBunch

    I’m mostly having trouble with restaurants. Many people just don’t understand how easily food can get contaminated if things aren’t cleaned properly. I’ve also had times when people just don’t care and add dairy to my dish anyway. I don’t really have trouble with other people cooking, my family is really good about managing my allergies and my best friend is an emt so she’s super careful about what she makes for me. In the beginning I did have some trouble reading labels but after a scare where my sister accidentally gave me dairy because we hadn’t read the label and the meat had been in the vegan section I’ve gotten a lot better at double checking everything I buy

  • Melissa G

    Have you ever heard of "chef cards"? They are small cards that you hand to the chef and it lists the foods you are allergic to. Sometimes, people take those more seriously than just being told. 

  • K8sMom2002

    TheNerdyBunch, … that sounds super scary that you are shaking and your blood pressure drops and your breathing is affected.

    I can understand how you don't want to use your epinephrine auto-injector every time … still our doctor has warned us that we can't predict how severe a reaction will be.

    She's quoted the National Institute of Allergy and Infectious Diseases (NIAID) line from the   to us many times:

    You cannot tell how severe your next allergic reaction will be based on the severity of your previous reactions. No available tests can predict how severe a future allergic reaction will be.

    Eating out can be super stressful. My teenage daughter manages a corn allergy, so I understand how hard it can be to eat out safely. 

    When do you eat out the most? Are you on the road a lot for work? Or are you trying to find safe restaurants for family celebrations or to mesh with a busy family schedule?

    We tend to eat at just a few restaurants that we've had good luck and a good response from. One resource we use is the website . Even though corn is not an ingredient that you can search for on the site, we've found that if a restaurant is allergy aware about other ingredients, the restaurant may be a good option.

  • K8sMom2002

    A couple of other thoughts …

    Yes, we always use chef cards. You can make them yourself — design them on a business card template and order online or print them out at home. We like to print them out at home so that we can easily use the backside to write down menu options for the chef to check.

    Here's the process I used to find safe restaurants for my daughter and to teach her how to advocate for herself — I'm a nerd, so of course I think in terms of flowcharts!

  • TheNerdyBunch

    I’m a college student, so I mostly try to find something for when I don’t have time to cook. My parents really like going out to eat as a family so I usually only really go to restaurants during the summer. The only times I go to an actual restaurant during the school year is for organization socials and banquets. My family just moved this summer so I’m still trying to find safe places for me to eat, I mostly stick to Panda Express (I work there so I know exactly how everything is made and what’s safe to eat) and mod pizza since the location near my house started implementing cross contamination procedures since I started going there (which I am so thankful for. It’s great when workers understand and can help out with managing a food allergy). Although I expect I will start getting less frequent reactions once I receive my service dog.

  • Brenda Silvia-Torma

    Hi @TheNerdyBunch,  to AAFA!  I'm so glad you found us. It sounds like you've already done a great job in advocating for yourself at MOD pizza and getting them to change their procedures–Congrats! That's huge! Do you have an anaphylaxis action plan? If you don't, you can download one of the forms listed in the third bullet below and ask your doctor to complete it. 

    Also, are your muscle spasms happening when you're experiencing anaphylaxis? I agree with LK, let your doctor know because all of your symptoms are important (especailly new ones) and allows him/her to best treat you. 

    Cynthia, Kathy and Melissa have given you some great ideas and resources! Here are a couple more:

    • (LCwFA)

    Keep us posted as to how you're doing–how's your semester going?

    Brenda

  • TheNerdyBunch

    Yes, the muscle spasms have only been happening when I accidentally have dairy (this is the only thing that really causes anaphylaxis) I had wheat two weeks ago (I’m barely allergic to it, I just feel out of breath during reactions) and I had not shaking but last Thursday I accidentally ate dairy and that my hands and legs were shaking during that reaction.

    ive talked to my mom and she’s going to take me to see my allergologist back home the first week of October.

  • Melissa G

    That's good that you will be seeing your allergist soon. could you call and check in before then?

  • K8sMom2002

    I'm so glad you will be seeing your allergist! Have you thought about asking your doc at home for a referral to an allergist closer to your school? That way you have someone close by just in case you have a severe reaction.

    It's good that you have at least a couple of go-to places to eat when time is tight. But I'm sure the limited variety gets kind of old.

    During the break between semesters could you try …

    • talking during a down time to other restaurants near school and home … you may have an inside track since you may know people through your work who work at these restaurants
    • finding restaurants that are naturally dairy free — maybe vegan restaurants?
    • if you are heading out with your family and the place takes reservations, could you (or your family) mention at the time of making the reservation that you have food allergies?

    And now I have a question for YOU, since you work at Panda Express! 

    My daughter is allergic to corn, but she's recently passed several different food challenges to corn derivatives. She CAN have corn syrup and corn oil, and maltodextrin.

    She still avoids:

    • corn
    • corn meal
    • cornstarch
    • modified food starch
    • corn protein, corn fiber

    We'd love to have an Asian restaurant that we could have as a "regular" place, but the sticking point has always been modified food starch in the sauces. Panda Express is a fairly popular restaurant in college towns … and she's about to head off to college.

    We don't have a Panda Express in our town … but there is one in a college town about an hour away. Neither of us have ever asked about food allergy awareness there.

    Any idea whether there are any menu items she could have?

  • TheNerdyBunch

    That is a good idea, i will talk to my doctor about trying to find an emergency doctor at college. So far I’ve only had one anaphylactic reaction while in college and I was able to go to the campus health center for the mandatory observation period (I just told the nurse at the front desk that I’d had a reaction and then sat in the lobby).

    I still haven’t been able to find many options to eat here because I’m a freshman and i don’t have a car so I’m pretty much restricted to on campus locations and since I’m from Texas, vegan locations aren’t exactly common.

     

    as for Panda Express: I know for certain that cornstarch is used for the B5 sauce (brócoli beef, string bean chicken, mushroom chicken, black pepper chicken), the orange chicken sauce and the teriyaki sauce. I’m not quite certain about the sweet fire chicken through so that might be an option for her although she can eat the teriyaki chicken itself (which isn’t bad without sauce) because that’s made with only oil and I think maybe the chowmein is good too, or the steamed rice. There should be an allergen menu online or you can contact Panda Express directly through the website. Although if she’s still allergic to corn I would get the steamed rice with the teriyaki chicken since everything (except for the steamed rice and teriyaki) is made in the same wok (same goes for the sides: the fried rice and chow mein are made in the same wok)

  • TheNerdyBunch

    I talked to a nurse that works the front desk and she said to wait until my follow up which is oct 8 since the doctor wants to do a blood test because I’m having some other problems with my allergies as well

  • Melissa G

    Glad you called and they will be running blood work. At least the 8th isn't too far away.

  • TheNerdyBunch

    Well my anaphylactic reactions have been getting more frequent (I had one two weeks ago to who knows what) and now I’m starting to be affected from just being around cooked dairy (ei pizza). Other than that, pretty well 😄. I will update when I know more from my appointment. Thank you guys for all the support!

  • K8sMom2002

    Oh, no! That's not good! Oct. 8 is a bit far away when you've already had an anaphylactic reaction. I would not feel comfortable waiting … but it sounds like you have called your doctor's office and explained the situation. It must be super frustrating for you.

  • Brenda Silvia-Torma

    @TheNerdyBunch, how are you feeling this week?  Do you have all of your questions ready for your appt on the 8th? 

    Hope you're feeling better!

    Brenda

  • TheNerdyBunch

    It’s only Tuesday but so far this week has been good 😄. I finally found a Starbucks on campus that uses a separate blender for almond milk and so I can finally have coffee again! Yes, I have my questions ready in the notes part of my phone, thanks for checking in!

  • Melissa G

    That's great you found a Starbucks so you can get your coffee! Some days it's the little things that matter! 

  • TheNerdyBunch

    So I just had my appointment. My doctor says that it is probably caused because of the low blood pressure that I get during reactions.

  • Melissa G

    Glad to hear that you probably have the cause now. Is there anything you can do to combat the low blood pressure during the reaction?

  • TheNerdyBunch

    He said that the only thing I can really do is to use my epipen. I usually try to avoid using it unless I notice that either a) my reaction is getting worse or b) it doesn’t go away within 15 minutes. Partially because I have a lot of reactions and I don’t want to waste an epipen if I don’t have to and partially because I’m terrified of needles 😬. But he has said that if I feel my blood pressure dropping I should immediately use my epipen.

  • Brenda Silvia-Torma
    TheNerdyBunch posted:

    He said that the only thing I can really do is to use my epipen. I usually try to avoid using it unless I notice that either a) my reaction is getting worse or b) it doesn’t go away within 15 minutes. Partially because I have a lot of reactions and I don’t want to waste an epipen if I don’t have to and partially because I’m terrified of needles 😬. But he has said that if I feel my blood pressure dropping I should immediately use my epipen.

    Hi @TheNerdyBunch, that makes sense. Did he help you with figuring out how to reduce your exposure? You may have mentioned that in an earlier response, if so, my apologies!  

  • TheNerdyBunch

    Yes, I used to take allergy medication (Zyrtec, Claritin, etc) once a day but now I have to take it twice a day in hopes that it will reduce the severity of my reactions. As for getting the reactions in the first place: about six months ago I started the process of getting an allergy alert service dog so that I could be warned ahead of time if any of my food was contaminated (since it’s really hard to eat safely with so many allergies). I will be getting my dog in November and he should be fully trained by next year 

  • Melissa G

    Do you have an anaphylaxis action plan? 

    Are you only able to eat on campus? So you don't have a kitchen in your room? Just trying to brainstorm some ideas for you…..

  • TheNerdyBunch

    I do not have an anaphylaxis plan. So far whenever I’ve had an anaphylactic reaction my sister has administered my epipen and driven me to the hospital for observation (I have only needed an ambulance once before and that was only because I was starting to go into shock). I do have a kitchen because I live off campus precisely because of my allergies. The only place on campus that I eat at is chick fil a because they sell grilled chicken and the fries are made separately from the fried chicken

  • Melissa G

    Have you ever been advised to always call 911 if the epi has been administered? That is what we have been told to do. 

  • TheNerdyBunch

    No, i was advised to drive to the hospital, let a nurse know I was there and then simply wait in the lobby. That way, I don’t have to pay for the emergency room unless I get a second reaction which hasn’t happened so far. 

  • TheNerdyBunch

    I’m not going to lie, this week has been rough. On Tuesday I found out that I am starting to develop three new allergies (corn, peanuts and soy). My doctor suspects that i do not have normal allergies, and that they may be caused by an underlying disease (probably mast cell activation syndrome), especially when it’s paired with symptoms like my bone pain (thank you so much to whoever told me to tell my doctor all of my symptoms even if I don’t think it’s relevant!). I had to use my epipen last week, I don’t know what it is that caused the reaction because what I ate was supposed to be safe, so who knows. I should be hearing back from my doctor hopefully today or tomorrow, I will update you when I hear back 😄

  • K8sMom2002

    Ugh … corn is tough! Let me know if you need help avoiding corn, as we manage that allergy.

    I will say that my DD has worked her way up the corn protein "ladder" with oral food challenges, and with successful passes on corn syrup, dextrose and maltodextrin, things are easier. There is very little corn protein in these derivatives, but you should talk to your doc about whether to avoid. We are still avoiding corn starch and modified food starch.

  • K8sMom2002

    An added thought … corn is in so many things that you can definitely look allergic to the world if you are allergic to corn. Our allergist suspected peanuts, soy, oat, apple and corn allergies … we wound up having our DD do food challenges and she passed peanuts, soy, oat and baked apple. When we pulled corn, so many of her symptoms went away. 

  • TheNerdyBunch

    It’s not an allergy just yet (thankfully), but there is a high chance that it will develop into an allergy in the next sixth months since all my other allergies did the same thing. The good thing is that I have a follow up appointment with my doctor during the Christmas break so hopefully he can give me some more information about how to avoid these new allergens.

  • Melissa G

    Oh I am so sorry!  We avoid corn too. It is so hard to avoid. It is everywhere…processed foods, medications….

    If you need help with anything, please let us know. 

  • Melissa G

    @TheNerdyBunch Did you have an appointment with your allergist over your Christmas break? How have you been doing?

  • TheNerdyBunch

    I did. Thankfully I can still eat corn, so that hasn’t developed yet and I now have new medication that’s been helping me manage my symptoms so my reactions from being around dairy aren’t as severe. Unfortunately, I’m currently going through a mast cell flare up so I’m waiting for that to pass. The good thing is that Obi (my service dog) has started to be able to consistently alert to dairy in my food. Thank you guys for all the support!😄

  • Breatheeasy

    Yes I feel internal tremor at times but I always thought it was because asthma is an autoimmune reaction. I have read that autoimmune issues can cause internal tremor. 

    I guess some of the food allergy issues lead to having an Asthma attack and then I also have low BP when I’m having an allergic or an asthma attack never been able to tell the difference - which causes further breathing issues. I sometimes have to just wait it out as I have not been given anything for it.

    PRoblem with food is I eat only homemade foods. Carefully cook it myself but some days I let my grandma cook it and she goes ‘try this blah’ and does not listen to what I got to say. Especially because I had no food allergies until recently. 

    And then at the doctors when i was tested I only had mild skin reaction to oats and soy but I am pretty sure I react to tomatoes, apples, bananas and fructose in some fruit. Not sure if I can eat berries but I seem to be ok with them for now. All the other ccommon  allergens – corn, wheat, dairy and nuts-  I avoid and it helps. 

     All outside foods cause anything that can make my issues worse. They can trigger my GERD or cause bloating which can cause broncospasms. and ofcourse if they come in contact with anything I’m allergic to then I have shortness of breath. I am allergic to food colors. And don’t do well on outside food. 

  • TheNerdyBunch

    @Breatheeasy I don’t have asthma, thankfully, but I didn’t develop any of my food allergies until I was 15 either. None of my allergens show up on skin tests at all but most of them do on blood tests. I was found to have mast cell activation syndrome which explains why some of my triggers don’t show up on any tests, it’s all about experimenting and finding out what affects you.