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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.

When I Get Glutened...
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13 posts in this topic

I am STILL suffering from the glutening I got from the cookie crumbs. My gut is OK, my psoriasis has quieted down, but whenever my jaw pain and swelling flares up, it lasts for three or four weeks.

I am in SO much pain right now. This morning when I got up I was really grumpy. I'm so TIRED of hurting!

But I picked up my banjo and started playing Christmas music on it. My banjo is so much fun! I swear, even though I have some incredibly expensive guitars, if there were a fire, I'd grab the banjo first. So as grumpy and full of pain as I was this morning, that banjo not only had me smiling, but I was giggling!

What do you do to distract yourself when you're feeling bad?

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Take a hot soak in the tub, drink lots of liquids (especially peppermint tea), listen to music, read, play stupid computer games, exercise, wish I could play banjo. Sometimes I color designs with colored pencils or research weird things on a search engine, like how to make hand sewn curtains. I have little intenton of making curtains, but it was amazing to see the results.

Anything to get my mind off of "it" and on to what's next.

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OH! I forgot all about colored pencils! I used to love to draw cartoonish pictures with colored pencils. I have a bunch of them stuffed away in a drawer somewhere. I'll have to dig them out and start using them again.

When I was married, we used to wrap all Christmas presents in plain white paper and then do funny Christmas cartoons on the paper. My niece still has one I did for her of Peter Rabbit in a Santa hat carrying a stocking full of carrots. She was a little kid then, and she's in college now!

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Sigh. Wine. Wine and baths.

Doesn't work at the office, though. Then it's artisinal tea (www.teance.com is my source) and praying that no one comes over to talk to me, or if they do that I can pretend to be a normal person long enough until they go away.

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I'm a WoW addict. WoW being World of Warcraft. It is a great way to keep my mind off of what ails me. When you're busy saving the world from dragons, there is little time for feeling like crap. What can I say? I'm a dork.

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I see i'm not the only gamer :) though i'd rather do systems over computer games.

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I do own a Wii, which is like the red-headed step child of game systems, I know. But, Kirby's Epic Yarn. Between being Zelda fans and frankly not personally being a fps fan we've just never gotten another system. (We're just too poor to own more than one I guess.) I also love Steam sales, it is really the only time I get new games. The holiday sales and such is when I get my presents in game form and try new things. To be honest though, it was Blizzard that got me hooked and nearly two decades later here I am still a Blizzard girl. My game time is pretty evenly distributed between WoW and Diablo 3. Whatever brings on the endless slaughter of bad guys. :D

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mmm i've got a wii (its blue <3) and a few other systems. I can certainly understand that. I rarely get new games anymore (currently doing my Majora's mask run on the wii virtual console, if i can ever get my homework done), but when i do i try to find rare rpgs. Mainly ps2, gamecube, and wii ones. Until my other system gets more games (ps3) that i adore, i won't upgrade its library. I do handhelds as well. I may start getting older generation ones (ps1 and NES games), but we'll see.

I do play on the computer for things like roller coaster tycoon. But as it stands right now, my computer is dedicated to schoolwork.

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I play a lot of Yahtzee and watch a lot of bad tv. I was glutened last night, so that's what I've been doing all day. May get the strength to make some soy vanilla chai in a bit though :)

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I just try to act normal and get my school, housework, and caring for children done.

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Bad tv for me too, if I am up. If I am in bed I listen to BBC Radio 4, which is talking, news, plays. It helps me feel a bit more connected.

Small kids mean I have to keep going. And the cat that wants to sleep on my head.

I used to have coloring books, adult ones like tiffany stained glass, Celtic knot work, but my kids pinched those :) fairies and tractors don't do it for me quite the same.

I don't do computer games because I was horribly addicted in my 20s :o would do if I didn't get woken at 6 every morning.

Chatting to friends by phone.

Popping in here to keep sane ;)

Get well soon, enjoy kitty cuddles x

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I got glutened over TG and am still suffering. Usually it seems like it only takes 3 to 5 days but this is a doozy. It's like fibromyalgia pain and fatigue....oh and a pinched nerve on top of it.

So, the upshot is since I am a SAHM and my family is fairly sympathetic I've been watching a lot of t.v. and going to bed around 7:30 at night. This is coming to an end as Christmas is looming and my house is wrecked. I've made a ton of green drinks, I'm eating paleo and only what I cook. I did eat at PF Chang's one time, but other than that I feed myself. Lots of water, magnesium, fish oil, d3, B complex...and a few nights with codeine left over from my gluteny past where this happened all the time.

Hope you feel better soon...I'm getting there.

Oh yes...more time on this board too getting some support :)

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OH! I forgot all about colored pencils! I used to love to draw cartoonish pictures with colored pencils. I have a bunch of them stuffed away in a drawer somewhere. I'll have to dig them out and start using them again.

When I was married, we used to wrap all Christmas presents in plain white paper and then do funny Christmas cartoons on the paper. My niece still has one I did for her of Peter Rabbit in a Santa hat carrying a stocking full of carrots. She was a little kid then, and she's in college now!

I find coloring very therepeutic. I tried knitting after I read a study that women achieve about the same biorythmic patterns from knitting as they do from Yoga (sorry, monitors, I can't attribute the source). Knitting exasperated me. I kept dropping stitches. And once the yarn was cut in the middle of a skein! (Kind of like breaking a guitar sting in the middle of a good lick maybe?)

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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      With blood results like these, your husband most definitely has Celiac Disease.  The biopsy is just to check to see how much damage.  Keep in mind that even with high, high test scores like these, damage can still be patchy. Although I would be very surprised if they didn't find enough with numbers like these!  Thank goodness he was able to have a definitive diagnosis and reason for his symptoms!  Good luck!
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