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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Anaphlyaxis
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10 posts in this topic

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?   

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Oh wow.

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

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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.

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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.   

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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?

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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

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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.

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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. 

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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.

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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.

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