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

Anaphlyaxis

jmrogers31

Recommended Posts

jmrogers31 Contributor
jmrogers31
Posted

I had a question for the board.  Has anyone ever had an anaphyaxis (spelling?) reaction to gluten?  I am not sure if gluten triggered it but Sunday night I had dinner (salmon, sweet potato casserole, green beans) and an hour later went for a jog.  I was running and my chin and lip started to feel numb and swollen.  So I cut my run short and headed home.  Started to feel itchy and so I went to wash my hands and looked in the mirror and WHOA!  My face was swollen like Will Smith in 'Hitch' when he eats peanuts.  Look down and my hands, forearms, and legs are swollen and red.  I paniced, my wife sees me and panics, we throw shoes on the kids and we are off to the ER.  I don't think it is exercise induced because I am a 20-25 mile a week runner and this is a first for me.  Maybe I breathed in something in the air?  I started to think about what I ate that day and wondered if the glaze on the salmon my wife made could of had gluten.  Needless to say I am on edge and will be seeing an alergist (again).  Has anyone had this happen to them?   

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

Celiac.com Sponsor (A8-M):


shadowicewolf Proficient
shadowicewolf
Posted

Oh wow.

It could be anything in that meal that could have caused it. Not nessisarially gluten either.

GottaSki Mentor
GottaSki
Posted

Hi JM!

 

This happens to me -- but mine didn't come on suddenly -- for years I couldn't tolerate exercise in warm weather...it got worse and now I have had several anaphylactic episodes...one was triggered by Sunflower Seeds during an elimination trial diet and the others have had not exact source -- the last one took two epi pens en route to the hospital and got worse once there.  

 

Until you know what the trigger is -- please ask your primary for an epi pen prescription -- these reactions can get worse each time -- I hope yours do not...but do carry Benedryl and Epi Pen with you.

jmrogers31 Contributor
jmrogers31
Posted
  • Author

I now one two epi pens and carry one with me at all times.  I am going to see an alergist asap but I believe I have to be off of the steroids and benedryl before I can.  I grew up with asthma and allergies to pollen, mold, and rag weed.  As an adult, those things seemed to fade in my 20's and then about age 30 I started to feel sick all the time again.  Finally figuring out the gluten was causing my issues I seemed to be healthy again and for 2 years I was problem free until Sunday.  Needless to say I am feeling a little bummed that I am back to stage 1 considering no asthma attack or allergic reaction as a child compared to this.  Wheezing and itchy red bumps are nothing now.   

cyclinglady Grand Master
cyclinglady
Posted

I had a question for the board.  Has anyone ever had an anaphyaxis (spelling?) reaction to gluten?  I am not sure if gluten triggered it but Sunday night I had dinner (salmon, sweet potato casserole, green beans) and an hour later went for a jog.  I was running and my chin and lip started to feel numb and swollen.  So I cut my run short and headed home.  Started to feel itchy and so I went to wash my hands and looked in the mirror and WHOA!  My face was swollen like Will Smith in 'Hitch' when he eats peanuts.  Look down and my hands, forearms, and legs are swollen and red.  I paniced, my wife sees me and panics, we throw shoes on the kids and we are off to the ER.  I don't think it is exercise induced because I am a 20-25 mile a week runner and this is a first for me.  Maybe I breathed in something in the air?  I started to think about what I ate that day and wondered if the glaze on the salmon my wife made could of had gluten.  Needless to say I am on edge and will be seeing an alergist (again).  Has anyone had this happen to them?   

I'm a cyclist/runner.  Are you sure you didn't get stung by anything?  I can't tell you how many "bugs" I've ingested on a ride!  I'm allergic to mold and if the "Santa Ana" winds are going, I usually get a reaction (though not severe!)   Anyway, if not, something you ate could have prompted the allergic reaction.  I took Advil and aspirin moderately (never abused it) and one day after taking a dose, my entire face swelled up and I couldn't move my tongue and I could barely see!  Allergies can develop at any time.  Oh, I have two friends who can't eat fish -- maybe the salmon?

Celiac Mindwarp Community Regular
Celiac Mindwarp
Posted

The advice in the UK is to always carry 2 epipens, in case a 2nd dose is needed. Not sure if it is the same where you are.

My son has anaphylactic allergy to nuts. We were told that if he had a second exposure, the reaction would likely be worse than the first, just to let you know. Epipens in hand, and make sure those around you know how to use them.

Good luck

GottaSki Mentor
GottaSki
Posted

The advice in the UK is to always carry 2 epipens, in case a 2nd dose is needed. Not sure if it is the same where you are.

My son has anaphylactic allergy to nuts. We were told that if he had a second exposure, the reaction would likely be worse than the first, just to let you know. Epipens in hand, and make sure those around you know how to use them.

Good luck

 

Good POINT!!!!

 

When I first got them I put them in two separate places -- the reason they prescibe two is in case you need both to get to help...turns out the first time we needed to use them I needed both -- thankfully we were at home and I wasn't out on my bike somewhere. 

 

I now carry two everywhere -- at first it was a PITA to carry in my pocket for walking/jogging, but now I am used to it.

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

Celiac.com Sponsor (A8-M):


jmrogers31 Contributor
jmrogers31
Posted
  • Author

Good advice everyone, thanks.  I will start carrying both with me and I will also make sure they test for fish with my allergy testing.  You would think fish and veggies would be okay, but who knows anymore.  I am going to have everyone test the practice pen with me to make sure my family is comfortable with it.  Thanks again. 

maggiesimpson Apprentice
maggiesimpson
Posted

I had my first anaphylaxis episode a couple months ago. They can't say for sure what the cause was, but shellfish is the main suspect. My blood test the following day was negative, with a 90% accuracy rate. The allergist said to avoid it no matter what the results were. I was loaded with antihystamine and steroids from the night before. Once i'm off my prescription steroids i will ask for more testing.

I had two milder reactions in the fall that were not correlated with food, so i really don't know what to think. I want to know, though. That was one of my go to restaurant options.

Based on all the research i've done since then i would say that yours sounds excersize induced or environmental. True anaphylaxis is suppose to take place within 30 minutes of ingestion. But you never know. Push for testing as long as they will accomodate you. I think it's important to know. Make sure people around you know how to use the epipen and at what point to administer a second shot if necessary. Carry both at all times, and if you have the option get an ICE app on your phone for contact information and medical info. Let the same people know it's there.

Best of luck to you, and i hope you have an answer soon.

tinpins Rookie
tinpins
Posted

I had a question for the board.  Has anyone ever had an anaphyaxis (spelling?) reaction to gluten?  I am not sure if gluten triggered it but Sunday night I had dinner (salmon, sweet potato casserole, green beans) and an hour later went for a jog.  I was running and my chin and lip started to feel numb and swollen.  So I cut my run short and headed home.  Started to feel itchy and so I went to wash my hands and looked in the mirror and WHOA!  My face was swollen like Will Smith in 'Hitch' when he eats peanuts.  Look down and my hands, forearms, and legs are swollen and red.  I paniced, my wife sees me and panics, we throw shoes on the kids and we are off to the ER.  I don't think it is exercise induced because I am a 20-25 mile a week runner and this is a first for me.  Maybe I breathed in something in the air?  I started to think about what I ate that day and wondered if the glaze on the salmon my wife made could of had gluten.  Needless to say I am on edge and will be seeing an alergist (again).  Has anyone had this happen to them?   

 

 

I had a question for the board.  Has anyone ever had an anaphyaxis (spelling?) reaction to gluten?  I am not sure if gluten triggered it but Sunday night I had dinner (salmon, sweet potato casserole, green beans) and an hour later went for a jog.  I was running and my chin and lip started to feel numb and swollen.  So I cut my run short and headed home.  Started to feel itchy and so I went to wash my hands and looked in the mirror and WHOA!  My face was swollen like Will Smith in 'Hitch' when he eats peanuts.  Look down and my hands, forearms, and legs are swollen and red.  I paniced, my wife sees me and panics, we throw shoes on the kids and we are off to the ER.  I don't think it is exercise induced because I am a 20-25 mile a week runner and this is a first for me.  Maybe I breathed in something in the air?  I started to think about what I ate that day and wondered if the glaze on the salmon my wife made could of had gluten.  Needless to say I am on edge and will be seeing an alergist (again).  Has anyone had this happen to them?   

 

I'm new to this board but I'm not new to what you have just experienced and just wanted to share what I learned. I had an severe anaphylaxis reaction which began during exercise and thankfully a hospital was nearby because my throat was closing because of the instant all over body swelling. I've never been so scared in my life. I've carried epipens ever since. Can't remember what I had eaten just prior to the incident because the incident put me into shock and I couldn't remember ... but it was probably a sandwich. The many allergists that I have seen over the years since then have seen this type of reaction ... and in particular with exercise and the combination of food triggers. For example, one jogger who had this happen to him several times found it was triggered by eating lettuce, drinking a beer and jogging ... those three things within a 24 hour period. I've learned that there is a layering effect with food and there are some things I can eat alone, which will make me feel out of sorts, but accompany them with other sensitivities and they push me over the edge. My second anaphylaxis reaction was to indian food ... curry powder has a combination of spices that is a killer for me. I try to avoid all foods now that I know will trigger reactions and that includes drugs (aspirin, NSAIDS, sulfa) or contact (NCR paper, latex) and a more recent finding "Balsalm of Peru" (all the aromatics, etc.) I'm sure there are lots of others who can share their similar allergic reactions. For me I carry epipens at all times (30 years+), avoid triggers, changed some habits (now I kayak, bike and hike because it is less strenuous) and get tested regularly by my allergist. I've only recently realized that the other intense rashes I have had over the years is related to gluten intolerance and am now working on reversing the "suicide rash" I have had for the last 15 months. There's lots of good help now in comparison to 35 years ago ... some docs then said it was all in your head : ) Ultimately you have to keep your own records and educate yourself and your family.

 

This forum has been an incredible gift to me. I finally have found answers I have been searching for for decades and realized I was not alone on this journey.

 

And a p.s. to all this. Get your family doctor to give you a letter to authorize you to carry the epipen with you at all times. I spent 8 hours layover in Hong Kong airport without my epipen because security removed it from my purse and told me to retrieve it when I re-boarded my ongoing flight. The letter overcomes that scary situation.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748
    LowellFrancis
    Newest Member
    LowellFrancis
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.