Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Can Food Intolerance Cause Anaphylaxis? Yes.


GottaSki

Recommended Posts

GottaSki Mentor

So...for the past 16 months I have been wondering if I'd ever have to put the stinking epi-pens we carry everywhere since my first anaphylactic type reaction to sunflower seeds back in November 2011 to use - hoped I never would, but better safe than sorry.

 

On Easter afternoon I was feeling great - happily cooking and baking up a storm for the family -- when out of no where my abdomen swelled up - huh - wtf I think to myself - had only had fresh vegies and freshly baked chicken thus far that day -- then my breathing started getting bad --- double huh -- hubby dismissed as just another strange reaction as I took my first benedryl -- within 10 mins my throat swelled up and it was official -- the second anaphylactic episode is FAR worse than the first - I gasped epi pen - hubby ran and got it and stabbed me - it was our first time so I wasn't even sure he did it right -- but there was a spot of blood on my white pants so he knew he got me -- throat opened up pretty quickly - so I added second benedryl -- five mins later throat started swelling again so off we went to emergency -- hubby drove very, very fast and stuck me a second time in route.  A couple very long hours later I'd had a total of three doses of epi, four benedryl - two pills plus a couple shots thru the IV - three breathing treatments, a couple bags of fluid and an EKG to make sure the epi wasn't giving me a heart attack - fun times  ;)

 

I was not going to post, but thought it important to remind folks -- if they are having "allergic" type reactions - even small ones, but are testing negative to food allergies - talk to their doc about getting an epi-pen -- had we not done this back when I had my first bad allergic reaction to an "intolerance" -- well - let's just say I am very thankful we had them and everyone in my family knows where they are and how to use them.

 

The scariest part was not anything above -- the scariest part is we still have no idea what triggered it.  Allergist is going to run yet another set of blood and patch tests -- hopefully we'll find something this round.

 

When in doubt - carry epi-pens!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



StephanieL Enthusiast

Intolerances can't be dx via testing. Also allergy testing is only 50% accurate for a positive but about 90% accurate for a negative so even with a negative reaction, an actual life threatening allergy may exist. Food trial are the ONLY 100% way to dx a food allergy.

 

 I am so glad you had Epi's and that you are okay now.  It is recommended that as soon as you use an Epi that you call 911.  This is standard procedure for an anaphylactic reaction because as you saw, things can go downhill pretty fast!

GottaSki Mentor

Thanks Stephanie -- I do understand that intolerances can not be determined by blood and scratch test -- this is why I wrote my post as many doctors have dismissed my intolerances in the past -- should others have escalating reactions to food - carry epi pens.

 

As I understand it -- it is possible to develop testable allergies as a person is exposed to something triggering allergic reactions - thus I am okay with additional rounds of allergy panels after each major episode -- especially since we have no idea what triggered this latest reaction.

 

And yes - should we have to ever use a pen again, we will be calling 911 as this second anaphylactic experience was far worse than my first.

shadowicewolf Proficient

Allergy testing is not as accurate as we would like. So you can never know what is going to set you off. Sometimes it will get ya one time but not the next, but the time after it will.

Don't dismiss it so easily as a intolerence. Not with that type of reaction.

GFinDC Veteran

Wow Lisa,  I am glad you are ok!  That's scary stuff.  Were you able to remember what you ate that day and write it down?  Might be a clue there somewhere.  A friend told me a few years ago that his wife had started taking quercetin and it helped her allergies.  Might be something to check up on.

GottaSki Mentor

Thanks Paul!

 

Yep...I know exactly what I ate - only safe stuff - spaghetti squash, carrots, baked chicken.  I tossed the leftover chicken, but really don't think it could have been that -- hubby suspects I breathed something in which triggered, but have no idea if that could happened or if it is even possible -- it is very frustrating to not be able to figure out a trigger -- all my other reactions to date have been explainable.  

 

I bought Quercetin awhile back but never used as I had to stop all supplements - just too hard on my system -- but I'll read up a bit more...maybe I can grind up in a smoothie or something.

shadowicewolf Proficient

Thanks Paul!

 

Yep...I know exactly what I ate - only safe stuff - spaghetti squash, carrots, baked chicken.  I tossed the leftover chicken, but really don't think it could have been that -- hubby suspects I breathed something in which triggered, but have no idea if that could happened or if it is even possible -- it is very frustrating to not be able to figure out a trigger -- all my other reactions to date have been explainable.  

 

I bought Quercetin awhile back but never used as I had to stop all supplements - just too hard on my system -- but I'll read up a bit more...maybe I can grind up in a smoothie or something.

Yep, environmental or even a food that is breathed in can do it. Sometimes there is no answer and you just have to carry a epi-pen everywhere.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



kareng Grand Master

That's horrible! Glad you are OK!

Were you cleaning up as you cooked? I think you should stop washing dishes and cleaning!

pricklypear1971 Community Regular

Well, that was harrowing.

I'm glad you're home, doing better, and especially that you had that epi pen!

GottaSki Mentor

Thanks K and Prickly :)

 

Finally feeling strong tonight...crazy how allergies can knock the stuffing right out of you.

 

Edited to add Shadow -- thank you too!

shadowicewolf Proficient

Thanks K and Prickly :)

 

Finally feeling strong tonight...crazy how allergies can knock the stuffing right out of you.

 

Edited to add Shadow -- thank you too!

:D

 

Yep. They are no fun.

Juliebove Rising Star

Intolerances can't be dx via testing. Also allergy testing is only 50% accurate for a positive but about 90% accurate for a negative so even with a negative reaction, an actual life threatening allergy may exist. Food trial are the ONLY 100% way to dx a food allergy.

 

 I am so glad you had Epi's and that you are okay now.  It is recommended that as soon as you use an Epi that you call 911.  This is standard procedure for an anaphylactic reaction because as you saw, things can go downhill pretty fast!

Actually they can but what she had was not an intolerance.  Intolorances can make you ill.  You can be sick to your stomach.  You can have sinus and ear infections.  You can have skin rashes.  But you will not have a reaction like that.  That's an IgE reaction and that's the only thing they will prescribe the Epi Pen for.  They won't do it for IgG allergies, aka intolerances.

 

My daughter and I both have had blood tests for intolerances.  The last test we had was a hair one.  I know some people don't believe in that but I certainly do!  Eliminating mint cleared up some problems that I never traced back to that.

Juliebove Rising Star

Allergy testing is not as accurate as we would like. So you can never know what is going to set you off. Sometimes it will get ya one time but not the next, but the time after it will.

Don't dismiss it so easily as a intolerence. Not with that type of reaction.

Agreed.  She had a full blown IgE reaction.

foam Apprentice

Sometimes I can go from having a lump the size of an egg in my neck (normal for me) to an orange sized in the space of 12 hours with a huge itching histamine response before hand, it's very disconcerting because it feels like it's going to burst or cut off the circulation in my neck arterys. I've never been able to fully track down the worst food that cause my big reactions like that. All I know is they NEVER happen if I make my own food in my own kitchen. But I can have "safe" foods somewhere else and have it happen... Granted I'm still having a constant immune action even at home but it stays constant, soon as I get food from somewhere else... bammm I'm ruined. As my IgE level has dropped from 4000 to under 2000 the size of the reactions is getting less, I've wondered if perhaps I should have a epi pen but because I've never had trouble breathing during a reaction haven't gone through with getting one. My reactions are not typical though so maybe I'm not in any danger

StephanieL Enthusiast

I am not going to get into the merits of intolerance testing.

 

 In case I wasn't clear I was saying she wasn't dealing with an intolerance and that even if she did have true IgE testing there is a possibility of about 10% it was a false -. I am well versed in food allergies so I apologies if what sounded clear in my head didn't translate so well :)

 

 

Actually they can but what she had was not an intolerance.  Intolorances can make you ill.  You can be sick to your stomach.

gatita Enthusiast

Wow, I missed this one! Sheesh, how awful!! Glad you are okay... and I hope you find out what it was.

 

You experience reinforces that I really need my doc to get me an Epi... because of $$ I think they're hesitating to refer to me yet another specialist. I better at least go get some benedryl.

janpell Apprentice

I just went for allergy testing today. It was negative to the 12 samples they tried but the red burning cheeks and tight forhead started within twenty minutes of administering. The doctor recommended an epipen regardless of the negative results as I appear to be reacting to something although in a different manner. It was so comforting to go to a doctor and not have my symptoms dismissed even though there are physical reactions that happen.

Lucky you had an epipen. I still feel a little silly and overreactive to actually get it as I haven't had a full blown attack.

mushroom Proficient

If and when that full-blown attack comes, you don't want to be without it :unsure:

GottaSki Mentor

I agree -- I should have had them earlier -- but did not know my reactions would become "that" severe -- after the first anaphylactic type reaction -- hubby and I made it thru on Benedryl -- I am VERY THANKFUL I told my doctor of the serious reaction for which she prescribed the pens -- now I tell anyone that is having increasingly strong reactions to random foods to ask their doctor for the prescription if not offered.  

 

We needed both pens to get me to the ER - now I understand why two are included!!!  Don't wait - fill the prescription -- practice with the empty practice pen they include and make sure everyone close to you knows where they are and how to use them -- I could only gasp "epi pen" this time and my husband knew what I meant -- had we not practiced we would have been having a very scary game of charades.

janpell Apprentice

Okay, reading your personal blurb at the bottom of posts I probably should get one to have on hand. Your symptoms are remarkably close to mine with autoimmune, endo and the like. Here I thought I was the only person who reacts to heat and exercise. I get extreme itching and want to tear off my skin. It doesn't always happen but as soon as I feel it, I stop or get out of the situation. Lifelong battle, indeed but it is getting easier the further I get into it and learn how to read my body.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

    2. - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

    3. - trents replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

    4. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

    5. - Charlie1946 replied to Charlie1946's topic in Related Issues & Disorders
      11

      Severe severe mouth pain

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,901
    • Most Online (within 30 mins)
      7,748

    kharvey
    Newest Member
    kharvey
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Charlie1946, There are many vitamin deficiencies associated with PCOS and Celiac disease and mental health issues.  The malabsorption of nutrients caused by Celiac can exacerbate PCOS and mental health issues. Vitamin B 3 Niacin (the kind that causes flushing) improves sebaceous hyperplasia and PCOS. (300 mg/day) Vitamin B 1 Thiamine improves dysphagia, and with Omega Threes, Sjogren's, and PCOS.     (300 mg/day) The other B vitamins are needed as well because they all work together like an orchestra.   The fat soluble vitamins A, D, E, and K, are needed as well.  Low Vitamin D is common in both PCOS and Celiac and depression.   Deficiencies in Niacin Thiamine, Cobalamine B12, Folate B 9, Vitamin C, and Vitamin D can cause mental health issues.   I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants.  My mental health issues didn't get better until my vitamin deficiencies were corrected and a gluten free keto/paleo diet adopted.   Though blood tests are not really accurate, you may want to get tested for deficiencies before supplementing, otherwise you'll be measuring the vitamins you've taken and blood tests will show blood levels that are too high. Yes, Thiamine TTFD and the other vitamins are available over-the-counter.  A B Complex with additional Thiamine TTFD and Niacin made a big difference to my health.  I follow a paleo diet, and make sure I get Omega Threes.  I took high dose Vitamin D to correct my deficiency there.   I've run through the mental health gamut if you would like to talk about your issues.  You can personal message us if you would be more comfortable.   Interesting Reading: Nutritional and herbal interventions for polycystic ovary syndrome (PCOS): a comprehensive review of dietary approaches, macronutrient impact, and herbal medicine in management https://pmc.ncbi.nlm.nih.gov/articles/PMC12049039/
    • cristiana
      Hi @Charlie1946 I am so sorry to hear you are suffering with this problem.   Just a few other thoughts.  I had debilitating anxiety prior to my diagnosis.  I was never admitted to a hospital but thankfully had a lot of support from friends and family, and found a couple of publications contained really helpful advice:  for depression, The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi, and for debilitating anxiety, At Last A Life by Paul David.  Both can be ordered online, there is also a website for the latter.  If you are deficient in or have low iron or B12 this can cause or worsen mental health issues.  I am sure my own issues were caused by long-term deficiencies.   If you can get your blood tested, it would be useful.  In the case of iron, make sure you only supplement if you have a deficiency, and levels can be monitored, as too much iron can be dangerous. If you have burning mouth issues, very bad TMJ or neuralgia,  I understand the pain can be managed by the use of a certain class of medication like amitriptyline, which is also used to treat depression.  But there again, it is possible with the correct diet and supplementation these issues might improve? I do hope that you find relief soon. Cristiana
    • trents
      @Charlie1946, as an alternative to milk-based protein shakes, let me suggest whey protein. Whey and casein are the two main proteins found in milk but whey doesn't cause issues like casein can for celiacs. Concerning your question about celiac safe mental health facilities, unfortunately, healthcare facilities in general do not have good reputations for being celiac safe. Most celiacs find that they need to depend on family members to advocate for them diligently or bring in food from the outside. Training of staff is inconsistent and there is the issue of turnover and also cross contamination.
    • Charlie1946
      @knitty kitty are you kidding?  I had no idea about the casein!! No one ever mentioned that to me at all!! I basically live off that milk! I have also wondered if I have Sjorgen's , but I haven't been to the doctor yet. Can you get the TTFD over the counter? I do have dysphasia and I have lysine I just haven't been good about taking it. I am so glad I found this group and all of you with all this helpful information!! I thought I was going crazy!!  I have sebaceous hyperplasia too- is that related to Celiac?  OH , and I wanted to ask if there is a site where I could find information on mental health issues , with celiac safe facilities??
    • Charlie1946
      @trents, Hi, thank you for the reply, I used to be pretty good at taking my vitamins and supplements, because I also have PCOS, I have Barrett's esophagus, it's just too expensive to have it stretched all the time, and I also get kinda panicked when trying to swallow pills because of getting choked a lot before.  I think maybe the thrush made it worse, I just can't figure out why I can't get it to go away 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.