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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

Allergic Reaction?
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I was at my parent's beach house with my mom, my kids, and my husband for some vacation time. I had lugged my own pans, dishes, silverware, and food with me which I was keeping separate from the food of the rest of the family. Well, my mom decides to make pancakes for my kids. I walked into the kitchen after she had just finished making the dough and breathed the flour. I didn't realize at first that she was doing that because of how the house is set up. Because of that, I didn't know what was wrong, just noticed my lungs were hurting and my throat felt tight. I left and went to another room and sat by the window trying not to panic and then made my husband take me out of the house and drive me around till I could breathe better.

I'd had this happen once before since going gluten free, and eventually realized what it was. As I thought about it I remembered having the same reaction when she'd baked something around me a while back. The reaction was exactly the same...throat closing down, and my lungs hurting. It is a bit freaky! I actually get a mild but similar sort of feeling start up if I walk down the baking aisle of Safeway to get to the gluten free section so I can't go down the baking aisle anymore. Thankfully after putting in a suggestion to Safeway (at least my local one) they have moved the gluten free section so I should be able to get pretzels. :)

The thing is, I never had such a serious reaction like this, at least that I noticed, before going off gluten. I mean, I always felt icky and I do remember having occasional periods where I had the feeling where my lungs were closing down, but it didn't happen every time I walked down the baking aisle or made bread or whatever.

I know I am still getting glutened, I have 2 sons and a husband who eat gluten and aren't AT ALL excited at the thought of going gluten-free. I am already going into panic mode thinking about the holidays. We have Thanksgiving for the family (my extended family and my husband's) at our house which is workable. Christmas Eve is at my in-law's and my mother-in-law SUCKS at taking care of special diet needs because she couldn't even handle the "no processed sugar" that we did with my kids during the school year. Christmas is at my mom and dad's house and she tries, and knows what the obvious things are to leave out, but doesn't know where all to look.

One thing at a time though I suppose. Flour dust...is that a common reaction? I can't take antihystamines so I can't take that when I start feeling that way. If it is an allergic reaction, do they tend to get worse over time? I have an epi pen for my allergy to bees, but I hope never to have to use that.

Thank you for letting me ramble with my paranoia. - Sara

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Hmmmm. It almost sounds like an allergic reaction, but there's one way to double check that - check your heart rate. If it's very elevated, that's a good sign that you may be having an allergic reaction.

I have a reaction with my throat feeling tight that is not celiac and not allergy that I'll pass on for what it's worth. It's called irritant induced paradoxical vocal cord dysfunction. This started after I went gluten free.

Essentially, when certain irritants come into contact with my throat, my vocal cords try to close when they should open. My throat gets tight enough that my voice changes within seconds, it's hard to breathe and I feel like I'm gasping for air, if it gets bad. Scary feeling.

For a long time, me and my doctors thought it was an allergic reaction, but I was finally diagnosed properly. Gluten and my other allergies, though, are the irritants that tend to set it off the worst. Guess they're more 'irritating,' LOL.

One of the reasons my doc looked at something other than allergies was what I mentioned above, the heart-rate. It was kind of like an allergy, but it just missed some crucial elements of an allergic reaction. I never got red, never got an elevated heart-rate. Just the breathing issue.

If you wish to check this out, the good news is that it is muscle related and physical therapy can help calm it down and prevent it from happening as often, or help you breathe after it does happen. (it's NOT psychosomatic, although some docs thought for a long time that the condition was psychological. Why are we not surprised? <_< ). Oddly, a speech therapist who specializes in this condition is who you would need to see for the PT. It is diagnosed by getting a scope down the throat to watch you when you are 'triggering,' which can be a bit scary to do, but it's very easy to see.

Do you have any asthma in the family? I understand that it can also go hand in hand with asthma, as well, although I do not have asthma at all.

Oh, and when this happens to me, walking down a bakery aisle is almost guaranteed to trigger this in me, or when someone is baking near me. Makes it hard to breathe every time.

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Wow, that is so interesting!

Ok, I think I may have to have my husband make a bit of a cloud of flour around me. Not sure that would really work though, my heart would probably be elevated because I'd be nervous. :rolleyes: Not terribly helpful that, testing myself for something and I know I'll end up creating a result I would get for one of the answers whether that is the actual answer or not. Maybe I can get him to sneak up on me one of these days. :D If I'm trying to do it as an experiment I may get nervous and elevate my heart if I walk down the baking aisle even. I want to be scientific about it.

I wonder why the reaction started for you after you went gluten free. Do you know? Do you only feel it in your vocal cords or do you feel it down in your lungs too?

I never can do things normally. I've got epilepsy, but heck...the neuro that is considered the best in our state has told me I'm "interesting"...I can't even do epilepsy right! It wouldn't surprise me if I had something else that would make doctors look at me like I'm a freak of nature. We have to do our part to help them buy bigger boats don't we?

I was tested when I was about 10 and was found to only be allergic to one type of grass, and sheep. I know I've developed more allergies since then because I've got seasonal allergies now and tested positive for bee allergies before I went to Albania to work in an orphanage back in 2000 (didn't think a third world country would be the best place to find out that allergy). Plus there is the gluten, duh. I have been tested for asthma because of how often I got bronchitis before I got my epilepsy under control oddly enough. I know I don't have that.

I will look into it. My doctor I have isn't great about not going for psychosomatic, but is fine about giving referrals if you ask for them. A scope is VERY VERY scary to me. My best friend went to one of the gastros here (which thankfully I was able to avoid needing to have a biopsy so I didn't have to deal with that) and she ended up with her throat all messed up because of it.

Very interesting that it happens to you in the baking aisle too. I KNOW it isn't psychological. It came as quite a surprise to me both times it happened when I was around the baking (especially since I didn't see the baking going on till I had the reaction), but after the second time in the baking aisle it didn't surprise me that I felt bad the next time I went, and then I didn't bother going in there again.

Thank you,

Sara

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I get a reaction every time I go in the bakery section at the grocery store. I feel like my throat is closing and I have to keep clearing my throat. My chest gets tight.

I wanted food allergy testing because the reaction is scary.

I just had the testing yesterday. It turns out I don't have a wheat allergy, but the Dr explained there is a "type 3" allergy that there is no testing or treatment for, aside from avoiding the offending thing.

He said it goes hand in hand with Celiac disease.

I've gotten that same reaction to bananas. It's similar to ragweed in the plant family. I didn't get a reaction from bananas on my test either. He said that was common too. He said it wouldn't be harmful for me to eat them, but I might tollerate them better if they were cooked a bit? I like them because my potassium level tends to dip.

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You know, I sometimes think it might just be simpler to lump me into the insane category and commit me into a padded room so long as they give me lots of things to keep myself occupied with. Problem being that I have lost much of my fine motor control through epilepsy and one of my favourite things to do other than my photography is paper work...and I have fits doing that anymore. Maybe I'll go back to doing pastels and oils and just kill off more of my brain cells so that I don't even know I'm locked up. *sigh* I swear, I never smoked or did drugs, and I didn't drink alcohol till I was WELL into my 20's because I was one of those prudish kids and I wanted to make sure I didn't do any damage to my body. Fat lot of good that did me.

You'd think that they could test for an allergy if they know it is there for goodness sake. Sort of like "Umm, there is an elephant in this room, but we can't look for it...sorry". Very odd and annoying!

I don't much like cooked bananas, I frustrate my husband and sons in fact because I like my bananas slightly green. :) Wonder if green would have the same effect though as cooked...pollen doesn't bother people before it is "ripe" you know. Just a thought.

Sara

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Ok, I think I may have to have my husband make a bit of a cloud of flour around me. Not sure that would really work though, my heart would probably be elevated because I'd be nervous.

With the breathing, I'd be so, so nervous doing it, honestly. Although it's not as scientific, it'd be much better to, when having a reaction, have someone check your heartrate. I know it'll be elevated because you'll be having a hard time catching your breath, but as I understand it, the heartrate jumps enough to be noticeable even with that, and will stay elevated for a while. I believe it's only elevated like this when it's the beginnings of anaphylaxis, but I could be wrong on that. Might be misremembering facts.

I can't actually say how well this heart-rate taking works, though, since mine never turned out to be an anaphylaxis producing allergy, so I never experienced that huge jump. Most of my other food allergies are so low level that I don't really notice a heart rate increase, and the one that isn't, I am too nervous to try and check out. ;)

Although mentioning it, I had to sit down and think how I would do it if I WAS going to, LOL. Just technically speaking, I think if one was checking things out, one could get a few different pale flours, with only one of them containing all gluten. Like rice flour and corn starch and cake flour (poofs better). Maybe mix all of them with powdered sugar, so they all had the same smell, too. Someone else could fill some squeeze bottles and label them with numbers/letters and note down which was which, but they're not part of the poofing or the heart rate monitoring. Then someone takes the heart rate, someone poofs the flour, and the participant would sit there and not know what's coming.

But again, I'd be a bit concerned to test it when it's making breathing an issue. Oh, and if it is an allergy? Yes, reactions can get worse, and it can be 'feel yucky' one time and 'anaphylaxis, holy crap' the next. And after you've had an allergic reaction, you'll be, as my doctor said, primed for another reaction until your system is back to normal - so a few days - and it'll usually be worse the second time.

I wonder why the reaction started for you after you went gluten free. Do you know? Do you only feel it in your vocal cords or do you feel it down in your lungs too?

I really don't know why it started then. The only thing I've got is my GI doc, who said that it's not uncommon to have a number of things pop up after going gluten free. Whether that's because of the changes my system is going through, or my body getting more nutrients and reacting like it always wanted to but didn't have the resources before? Or something else? No idea.

On the forums here, over the last couple years, there have been people who said that after going gluten free, they started having: asthma issues, allergies popping up (or maybe always there and just now reacting more noticeably), thyroid issues starting, chemical sensitivities. All sorts of things. Very curious, isn't it?

For the vocal cord dysfunction, I feel it mostly in my throat - throat feels like a horrendous sore throat, hurts to swallow like there's a big lump there, raw and swollen feeling. But the lungs, not so much. I've heard of that with allergies and asthma, though.

And...could be a combination, which makes things really fun. It's what threw the docs off, with me. With wheat flour, I would get my neurological symptoms (vertigo, wooziness, fuzzy headed thinking) when I inhaled flour AND I'd get the vocal cord thing. Or if it was one of my allergies, I'd get vocal cord issues AND some of my allergy symptoms, which are more flu-like.

...life would be much simpler if it were less complicated, wouldn't it? Sigh.

I never can do things normally. I've got epilepsy, but heck...the neuro that is considered the best in our state has told me I'm "interesting"...I can't even do epilepsy right!

Not knowing in any way why your epilepsy is considered unique, I'm still gonna ask this question: has your neuro ever looked at gluten induced seizures? That's one of the nuero symptoms that some celiacs get. It's not a symptom that I am familiar with, however, so I don't know much about it. I'm sure there are some here who do, however, and I've read about people here having gluten induced seizures on celiac.com. It might not pertain to your seizures at all, but figured I'd ask!

We have to do our part to help them buy bigger boats don't we?

LOL, yeah. I think I have funded an entire fleet at this point!

A scope is VERY VERY scary to me.

Oh, I didn't mean to give a false impression, whoops! It's not a big scope, like an endoscope. I was being a bit imprecise and using a term that's, well, imprecise because I don't know what the real term is. Should have done better!

For watching the vocal cords, it's like a camera on a tube that goes into your nose (they numb it first, phew), and down your throat that way, with a little light attached to it, and it hangs down your throat above your vocal cords and they ask you to make certain sounds, inhale and exhale, that sort of thing. Nothing will show up if you are not triggered, but if you are, you can see your vocal cords closing when they should open.

I should mention, in the self-testing venue, even vocal cord dysfunction can be deadly. While physical therapy will work most times, the vocal cords can be triggered badly enough that they will close completely and cut off the air supply. I have never had that happen to me that badly, and it was triggered multiple times a day for a few months there, but the doc gave me the warning. So if you suspect it, and it's really hard to breathe, it's worth checking out, definitely.

Very interesting that it happens to you in the baking aisle too. I KNOW it isn't psychological. It came as quite a surprise to me both times it happened when I was around the baking

Yeah, that was me too! I travel around my town often enough with celiac kids that I'm sometimes going to an unfamiliar grocery store to get them some food. For a long time, I would just blithely walk in and suddenly I'd be woozy, have a hard time breathing, and realize I was in the stupid bread section and hadn't noticed because me and the kids had been talking.

That can only happen so many times before you just avoid it. Although I'm still dozy enough that I would probably do it again, once enough time has passed for me to forget to be careful, except my kids stop me now, LOL. 'Mom, bread section. Don't go there.' :lol:

I hope you figure this one out soon! I imagine like many of us, it comes down to avoiding the poofing clouds of flour completely.

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