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. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      how much gluten do I need to eat before blood tests?

    2. - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      how much gluten do I need to eat before blood tests?

    3. - trents replied to McKinleyWY's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Accuracy of testing concerns

    4. - Theresa2407 replied to chrish42's topic in Doctors
      4

      Doctors and Celiac.com

    5. - Scott Adams replied to suek54's topic in Dermatitis Herpetiformis
      4

      Awaiting dermatitis herpetiformis confirmation following biopsy

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

    • Total Members
      133,254
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • trents
      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
    • Theresa2407
      Our support groups in Iowa have tried for years to educate doctors and resource sites like this one.  We have held yearly conferences with continued education classes.   We have brought in Dr. Murray, Dr. Fasano, Dr. Green and Dr. elliott.  In those many years we may have had 2 doctors attend.  We sent them information, with no response.  I talked to my personal doctor and she said their training for Celiac was to show them a skinny man in boxer shorts and a huge stomach.  Saying if you see this, it is Celiac.  If it isn't in their playbook then they don't care.  Most call it an allergy with no mention of our immune system.  There is so much false information on the internet.  Then people don't understand why they can't get well and are acquiring more immune diseases. I mention this site to everyone.  Scott has working hard for the Celiac community.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
×
×
  • 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.