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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?  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
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bartfull

When I Get Glutened...

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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 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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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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    • I am sorry that I was not clear.    I only mentioned  your diagnostic background, not to discredit you, but because without any lab results (other than a positive gene test), how can you be sure that gluten (shampoo containing wheat protein) was the actual culprit (not a guess) of your symptoms?  It is common for celiacs to receive follow-up antibodies to monitor their dietary compliance.  This is not perfect, but it is the only tool in the toolbox for now.   My husband has been gluten free 12 years prior to my diagnosis.  He went gluten free per the poor advice of his GP and my allergist.  So, I am not trying to discount your diagnosis at all.  I am just trying to see if other lab tests (e.g. liver tests that were elevated previously for you when you were still consuming gluten) were measured after your shampoo exposure.   I am curious because I have had issues over the last year.  I was glutened last January, had the flu, a tooth infection, a cold and a tooth extraction, three rounds of antibiotics (verified to be gluten free) within a month or so.  Like, you, I am very careful.  I have no idea as to how I was exposed.   The last time I ate out was a year ago and even then it was at at 100% gluten free restaurant.   My hubby did not have any symptoms at this time.  He is like my canary.    I went to my GI and my DGP IgA was off the charts even some three months later.   My celiac-related symptoms diminished in three months, but I struggled with autoimmune hives for six.  My GI offered to do an endoscopy in the summer.  Instead I chose to follow the Fasano diet.  I still was not feeling well.  In December, my antibodies were 80.  They were either on a decline or they were increasing again.  I opted for the endoscopy.  My biopsies revealed a healed small intestine (you could see the villi on the scope too).  But I was diagnosed with chronic gastritis and had a polyp removed.   So, all this time I thought my celiac disease was active, but it was NOT the source of my current gut issues.   Again, my apologies.  I just wanted to know how you know for SURE that hydrologized wheat protein from someone else’s shampoo and conditioner could reach your small intestine to trigger an autoimmune reaction.  Maybe, like me, Gluten was not the actual culprit.    
    • The reason I think it was the shampoo? Process of elimination. Our house is almost entirely gluten free (except for this shampoo which slipped through the cracks until I read the ingredient label). My husband has bread that he eats at lunch, but he practices something that resembles aseptic technique from the lab when he's making his sandwiches. He's been doing this for years now and I've never been glutened from within my home. The previous week I hadn't eaten out, I cooked all my food, I don't eat processed food and I never eat something from a shared facility.  Usually if I get glutened it's a single dose sort of thing and it follows a very predictable course, to the point where I can estimate when I got glutened within 24 hours of when it happened. However, this time, I was feeling achy and arthritic and moody for about a week before it got bad enough for me to recognize it as the result of gluten exposure, at which point we went searching and found the shampoo (and conditioner, which does leave more of a residue than shampoo), which he immediately stopped using. Within three days I was feeling back to normal (which is the usual course for me).  Sure, it could have been something else, but I know how sensitive I am, and, as silly as it sounds, it was the only thing that made sense. The other thing you said: You're correct, mine was not a rock solid celiac diagnosis, but I have no doubt that gluten is the problem. I was SICK. I went through two different gluten challenges in an effort to get a more straightforward diagnosis during which I was a barely functioning human being. Consuming gluten may not have given me blunted villi or elevated antibodies, but it did inflame my gut, and actually started to damage my liver. If you look at my diagnosis thread, I had elevated liver enzymes, which have been correlated with celiac disease in the past. There was no alternative explanation for the liver enzymes, he checked EVERYTHING.  I too am a scientist and I have spent a lot of time with the literature trying to make sense of my condition.  https://www.ncbi.nlm.nih.gov/pubmed/26150087 I also have no doubt that gluten was damaging my intestines in some way, as any prolonged gluten exposure in the past has inevitably been followed by a severe FODMAP intolerance that goes away once I've eliminated the gluten and given myself a month or so to heal.  I also had a very fast diagnosis following the onset of symptoms (~1 year) so it's possible that the disease never had a chance to manifest as full celiac. I wasn't willing to eat gluten long enough to find out. As a result of my diagnosis, hazy as it was, I am *meticulously* gluten free. It is not a fad for me. I don't occasionally cheat. It is my life, for better or worse. All of that being said, I'm not sure what my diagnosis has to do with your question. You say you're not trying to be rude, but when you bring up my diagnosis in a thread that has nothing to do with diagnostics, it seems like you're trying to undermine the validity of my disease or the validity of my input in this forum. If I'm being hypersensitive, I apologize, but that's how you came across on my end. I'll admit that the fact that my diagnosis wasn't more straight forward does make me a bit defensive, but I promise that even if I didn't have a solid diagnosis, I interact with the world as though I did, and I'm not out there giving people the wrong idea about celiac disease by not taking it seriously. If there was a connection between your question and my diagnostics that I missed I would appreciate you giving me the chance to better understand what you were asking. 
    • I am just curious.  As a scientist (and I am not trying to be rude), how can you determine if hydrologized wheat protein from your husband’s shampoo was actually the culprit?  If I recall at your diagnosis, you were seronegative, Marsh Stage I, gene positive,  but your doctor still  suspected celiac disease.  You improved on a gluten diet.  Other than observation, how do you really know?  Could it not be something else that triggered your symptoms?   I firmly believe that even trace amounts of gluten (under 20 ppm), can impact sensitive celiacs.  But traces of a protein within a shampoo from someone else’s hair that was rinsed?    
    • I also can't have dairy but through a series of experiments and a lot of research I think I've pinpointed my problem. It may or may not be the same for you, but I thought I'd share.  There are two kinds of beta-casein protein A1 and A2. We'll call A1 "bad casein" and A2 "good casein". The two proteins differ only in a single amino acid, but this is enough to make it so that they are processed differently in your guy. Bad casein is actually broken down into a casomorphin, which is an opioid peptide. That does not mean that milk gets you high, or is as addictive as heroin, or anything like that, it just means that it can interact with opioid receptors (which the gut has a bunch of). It's worth noting that opioids cause constipation due to their interaction with the opioid receptors in the gut, and that a lot of people feel like cheese and dairy slow things down, but any connection between the two is pure speculation on my part at this point.  Now here's where things get weird. The vast majority of milk cows in the western world are derived from Holstein-like breeds, meaning black and white cows. In a few select places, you'll see farms that use Jersey-type cows, or brown cows (Jersey cows produce less milk than Holsteins, but many connoisseurs feel it's a higher quality milk, particularly for cheese).  Holstein-like cows have A1 and A2 casein (bad and good), however, Jersey-type cows only have A2 (good casein), unless their genetic line involved a Holstein somewhere in the past, which does happen.  A company in New Zealand figured out how to test their cows for these two genes, and selected their herd down to cows that specifically produce ONLY A2 (good) casein. You might have seen it in the store, it's called A2 milk. Some people have had a lot of luck with this milk, though it still doesn't solve the problem of cheese.  I have suspected, due to trial and error and a few accidental exposures, that I have a problem with A1 casein, but not A2. In line with this: I am able to eat sheep and goat dairy without any difficulty, so at least I can still enjoy those cheeses! I am also fortunate because I'm apparently not too sensitive, as I can still eat cow-milk butter. The process of making butter removes *most* (read: enough for me) of the casein.  However, if I eat cow cheese or a baked good with milk, I get really sick. It's a much faster reaction than if I get glutened. Within minutes I'm dizzy and tired and my limbs are heavy. I have to sleep for a couple of hours, and then, over the next couple of days, I'm vulnerable to moodiness and muscles spasms and stomach upset just as though I'd been glutened (though the brain fog isn't as bad). I actually haven't tried A2 milk yet, mostly due to lack of availability (and motivation, I don't miss milk, I miss CHEESE). However, last year, when I was getting ready to go on a trip to Italy, I had a thought. Once, in the recent past, when I'd been testing dairy, I'd had a slice of parmesan cheese. Miracle of miracles, I was fine. I didn't feel a thing! I was so excited that I ran out and got some brie to eat as a snack. That did not go so well... Turns out parmigiano reggiano is made from the milk of the Reggiana variety of cow which is, you guessed it, a brown cow (they say red). I did a little more research and found that dairies in Italy predominantly use brown cows. So I decided to try something. As some of you may know, Italy is something of a haven for celiacs. It's one of the most gluten-free friendly places I've ever been. You can say "senza glutine" in the smallest little town and they don't even bat their eyelashes. You can buy gluten free foods in the pharmacy because they're considered a MEDICAL NECESSITY. If travelling-while-celiac freaks you out, go to Italy. Check out the website for the AIC (Italy's Celiac society), find some accredited restaurants, and GO NUTS. While I was there, I decided to see if I could eat the dairy. I could.  Friends, I ate gelato Every. Single. Night. after that. It was amazing. Between the dairy being safe for me and the preponderance of gluten free options, it was almost like I didn't have dietary restrictions. It was heaven. I want to go back and never leave.  So that's my story. Almost too crazy to believe.  TL;DR: Black and white cows make me sick, brown cows are my friends.
    • I'm a scientist, and I did a little research into the study. Looks valid and it was published in a respected journal.  http://www.gastrojournal.org/article/S0016-5085(17)36352-7/pdf The science looks solid. As someone who didn't have a super clean cut diagnosis before going gluten free, I'd love to see something like this become available. Then again, there's no doubt in my mind that I can't have gluten, so any additional testing would be purely academic. But like I said, I'm a scientist. I can't help myself. 
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