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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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Can Food Intolerance Cause Anaphylaxis? Yes.
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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!

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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!

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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.

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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.

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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.

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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.

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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.

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That's horrible! Glad you are OK!

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

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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!

Edited by GottaSki

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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.

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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.

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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.

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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

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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.

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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.

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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.

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

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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.

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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.

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