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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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mytummyhurts

Celiac T-shirts

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I don't know if this was my doing or if other people asked for it too. I asked butyoudontlooksick.com to start making Celiac Disease Sucks t-shirts. They already had Fibromyalgia ones and Lupus. And they wrote back to me and said they had added them. Check it out:

http://www.cafepress.com/bydls/669450

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Hmmm. I don't really like the negative aspect of that slogan. The goal, in my opinion, is to catch the disease early in life...speaking of children here, and since it's a lifelong condition, I'd prefer a positive approach. I prefer the "No grain, no pain" slogan as well as the "silly Yak" slogan. Since so many people are unaware of Celiac disease, this whole "SUCKS" slogan might be the first impression a person will have. No one does well with negativity. People back away from things that will cause them discomfort, or things they can't do something to make better.

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Hmmm.  I don't really like the negative aspect of that slogan.  The goal, in my opinion, is to catch the disease early in life...speaking of children here, and since it's a lifelong condition, I'd prefer a positive approach.  I prefer the "No grain, no pain" slogan as well as the "silly Yak" slogan.  Since so many people are unaware of Celiac disease, this whole "SUCKS" slogan might be the first impression a person will have.  No one does well with negativity.  People back away from things that will cause them discomfort, or things they can't do something to make better.

yeah, I don't like the negative thing either because I personally do not think it sucks. I also don't want people I first meet and tell about celiac to feel bad for me. I don't want sympathy...I'm happy with the way I am and proud to be gluten free :D

Thanks for posting the link though...they have some cool items...I wonder if they could make them with a different slogan

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I love the slogan! It takes a serious subject and deals with it with humor. Plus - it will also get people to ask you about it, then you can *smile* and tell them about it and take away any negativity. :)

But - this does suck! I mean, seriously! I would love to get one of these shirts and wear it to a bakery or a pastry shop or whatever - maybe that would get the attention of some of the owners and get them to consider making food that people with celiacs disease can eat :)

I agree that we shouldn't make our lives out to be horrible or anything like that - but maybe if others realize that this does "suck" then they will be more inclined to help us out :) I'm getting kind of sick of saying, "Ya.. I have to avoid gluten but that's all right! It's not that big of a deal" and then putting forward my best Pollyanna smile ":D" No! I DO want people to know that this is hard and that I do need help & support. Absolutely!

I love these shirts. I'll be ordering a couple ;) Thanks for the link!!

- Michelle :wub:

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Good points, Michelle! I like them because they reach out and grab people. I think that (the braver) people will say, "Hey, what's celiac disease?" And this will give you an oppurtunity to talk about it. And the disease really does suck when you are going through ten years of horrible pain and symptoms to only find out it would of been so easily solved. I just think that the shirt is simple enough to really grab peoples attention.

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I just don't think it sucks, so I'm not a fan of the slogan. (I'm fine with negativity for humor ;-), I just disagree.) But hey, the more options the better!

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Thanks for posting the link though...they have some cool items...I wonder if they could make them with a different slogan

Maybe we could all get free hoodies with our user name on the back, and the celiac.com icon on the front! (the one with a C crossing out the wheat) I like that idea :D

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I love it. It is funny. It is frank. Some days that phrase just sums it up. I think that the shirts would help raise awareness the same amount that any other "celiac shirt" would.

I have to say this--I have Celiac Disease, it is frustrating, an inconveinence, and at times scary=it sucks. But I am learning to cope with it. I don't feel blessed to have the disease and I don't feel that gluten is evil/bad for all humans, gluten just doesn't work for me and other Celiacs. We're all handed things to deal with in life, and Celiac Disease is what I have to deal with. Humor helps me cope. The shirts make me laugh.

Thanks for sharing the shirts with all of us. And thanks to everyone for our diverse opinions.

Have a Good Day!

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I would rather have a shirt that says "the ubiquity of wheat sucks!"

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I would rather have a shirt that says "the ubiquity of wheat sucks!"

That one I can agree with! ;-) I would definitely buy that shirt - and no small part of that is your use of the word ubiquity! ;-)

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Guest Eloisa

Maybe if lots of people would wear these shirts it would spike the interests of the media and we'd get more stories on the news. This would definitely make more people aware of Celiac and what we have to avoid.

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I have my whole gluten free atire in my closet

"Kiss Me, I'm Gluten Free"

"Celiacs bake it better"

"Sans Gluten"

"Food Allergies, please don't feed"

"I'm gluten Free"

"Gluten Free Flower"

"Gluten Free"

I think that's it :)

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OK, maybe I spent too many years working in a fabric/crafts store, or maybe too many years too poor to buy fancy-sloganned shirts! What is stopping any of us from buying plain tshirts and sweats, and using fabric paints and stencils to put our own celiac designs on them? Nothing that is copyrighted, of course, but original art!

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Yeah, I've thought about doing that too. I just haven't thought of anything cool yet.

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Guest BERNESES

I love the "Wheat Sucks!" or "Kiss me, I'm Gluten Free" where did those come from? I'd love to get one!

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Oh, gosh, I've been away too long. I was in Chicago for a GIG conference and I had an amazing time...my first more than one day conference and I was in gluten-free heaven! Met some great people, too. But I came back to five pages of new posts...I'll be here till 3 AM, lol.

I'm not a huge fan of celiac disease sucks, either. I only have one type of celiac shirt--got it at a Columbia Presbysterian family screening fair where they also had some talks...anyway, it says Columbia University Celiac Disease Center or something in small letters on the front, and on the back in big comical letters it has "Got Celiac?" I wore those shirts during the GIG conference and everyone kept asking me where to get them :)

Will post of my full experience later.......

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www.neighborhoodies.com

go here--was thinking of making a gluten t-shirt on this site. they have awesome t-shirts, hoodies etc. very cool. i have a hoodie from there that says 'van hut'--a combo of my maiden and married last names :)

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I think celiac disease does suck and I love the t-shirt. I think every disease sucks, but celiac is worse than some because it is not as well-known as others. If I saw a shirt like the one described and did not know about it, I would probably ask about it. It may help people learn about something that is likely effecting a much larger percentage of the population than anyone can guess. Humor is a wonderful teaching tool. But I would not let a young child wear something with "sucks" on it. Funny thing, when my daughter complains about celiac disease she always tries to slip in "sucks" and tries to get away with it!

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Yeah, I think the idea is that we would like a cure, so it does suck to have it. It doesn't suck as much some other diseases I can think of, but it does still suck. I think a lot of us were just so relieved to finally figure out what was wrong with us that we embrace Celiac disease as the cure and not the problem because we started feeling better when we found out we had it. The point is that we shouldn't settle for less than the best. This is a disease that with more awareness and research could one day have a vaccine or a pill. As the saying goes "Any publicity is good publicity." I don't necessarily agree with that saying in every circumstance, now, but I think when the end result is awareness of a disease, it's true!

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perhaps 'gluten sucks' is better than 'celiac sucks', and i'm sure some feel using the word 'suck' on a t-shirt in any form, well, sucks. :lol:

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perhaps 'gluten sucks' is better than 'celiac sucks', and i'm sure some feel using the word 'suck' on a t-shirt in any form, well, sucks. :lol:

Yes. We can all agree that gluten sucks. :)

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Hey, I saw a funny quote the other day...

"Gravity doesn't exist - the Earth sucks!"

tee-hee :) (I know, not related to celiac disease - but funny!)

- Michelle :wub:

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perhaps 'gluten sucks' is better than 'celiac sucks', and i'm sure some feel using the word 'suck' on a t-shirt in any form, well, sucks. :lol:

I totally understand that some people do not like this word and I can sympathize with them as there are some words out there I don't like to hear or read on people's shirts.

I do like the idea of saying something about gluten. Maybe something on the front of a shirt that says "Gluten Free Zone" or "Gluten Bites!"

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    • 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. 
    • Update: I have tried calling the company several times and have emailed twice. I have yet to talk to a person on the phone and no one has emailed me back.    I did a little research and they were are already involved with a class action lawsuit about being labeled as salt free and one of the first ingredients is sodium chloride.  I am done with this shampoo because this whole company seems a little shady now! 
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