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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.

Wow, People Really Don't Get It...
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I get this every time I try to explain it to people. Its been two years, and frankly I've given up trying to make people understand that it isn't a lifestyle choice for me. Its not like "choosing" to be a vegan or a veg. If I didn't have celiac, I'd certainally be eating whatever I want. Hopefully I dont offend, but....to me the worse to explain it to are the hippy tree hugger types. They think its cool or something! Um....noooo....this isn't my idea of cool, having any disease is not cool, and not a damn trend.:huh: Well, servers too.....I can see the dazed look in there eyes, and I always fear getting glutened because they are not listening.

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Hi all,

I really enjoyed reading this thread, because I've been dealing with food intolerances since the age of 8 and am now 63. I relived so many of my early days of trying to discover what was wrong, just by reading your comments, and I had to laugh along with you, because the general public is so in need of being educated. I can remember trying to convince my family members and friends of the importance of learning if one has Celiac, and then sticking with the diet if they do. Now, about 8 years into sticking strictly to the gluten free diet (I've gone vegan because I was having problems with everything except fruits, vegetables, nuts, seeds, and legumes) I seldom say anything to anyone in my circle about their own diets, since I'm so busy just trying to keep my own diet in check, and because it seems that whatever I say just seems to go by the wayside anyhow. After reading your comments, I can finally admit that I've done the best I can to educate others, and will certainly continue, but we live in a world where people like to eat what they like to eat, until they just can't eat it anymore. Welda

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I was pleasantly surprised by another friend's reaction when I was at her house yesterday with my kids and we stayed for lunch. She was making sandwiches for her kids, I was making some for mine, and she asked what I'd like, she was going to make something for herself. I just said casually that I'd found out recently that wheat makes me sick (she did grab her bread and say, "Is there wheat in this?" in all seriousness), and asked if i could just hunt around and find something to eat. I knew I had Larabars in my bag, so I wouldn't starve anyway. She said, "Yeah, just go see what I've got."

I found corn tortilas that she had for a casserole, and shredded cheese and tomatoes. So I made myself a baked quesadilla, had some of the kids' cheese puffs, and some raw veggies. My friend wasn't as weirded out as some might, because her youngest has to avoid dairy, and she's used to reading labels. She didn't make me feel like I was being difficult, she just said, "That's too bad you can't eat bread." Of course, we tend to just rummage in each other's kitchens when it's time to make lunch, so she didn't feel like I'd thrown her a curveball or anything! :)

I think the best way to tell people, in such a situation, is just matter-of-factly. Not like, "Ah, geeze, this is such a pain," because they might think you don't really want to avoid wheat. They might think you're just doing it becaus ea doctor told you, and you can cheat if you want. I just said it very casually, without any note of "it stinks" in my voice, and we moved on from there. People will follow your lead. If you sound confident and assured about your dietary needs, and like it's just a fact of life, they won't try to challenge you. Later, we were talking about weird things we did as kids (I ate dirt, a lot of dirt) and she asked if that was pica, and had something to do with celiac disease, which I had briefly explained. She got it!

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Some of my family members also think it is funny to poke fun at cross contamination. They say things like, "What if the clerk touched some gluten two years ago?"

I gotta confess, my family jokes about cross-contamination. We call it "Cross-Contamination: The Glutening", like it was a cheesy monster movie on the Sci-Fi Channel (I try to do the Don LaFontaine voice, but I'm a bit too... female for it to work. ;) ) My daughter will hand me a glass of water, then ask, "Are you sure it's gluten-free?" But, we're kidding... I'm sorry that your family are being jerks about it.

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Hi all- I'm new here. My doctor didn't get a positive blood result but has me off of gluten, caffeine, and dairy until we can figure out why I feel like crap.

Anyway, last Friday at work someone was kind enough to bring in bagels and cream cheese for the whole group for breakfast, and a cake for lunch...and set them in the cubicle next to mine. All day people were stopping by and asking me why I didn't have any. I explained to two of my coworkers what was going on and the one asked if I could have white bread. I told her that white bread had wheat in it. She came back with, "well then why do they call wheat bread wheat bread and white bread white bread?" :o Really? I mean, she's a nice girl and she's actually pretty smart too...but REALLY?

They're bringing in cupcakes on Wednesday, so I'm sure I'll hear it all over again.

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Hi all- I'm new here. My doctor didn't get a positive blood result but has me off of gluten, caffeine, and dairy until we can figure out why I feel like crap.

Anyway, last Friday at work someone was kind enough to bring in bagels and cream cheese for the whole group for breakfast, and a cake for lunch...and set them in the cubicle next to mine. All day people were stopping by and asking me why I didn't have any. I explained to two of my coworkers what was going on and the one asked if I could have white bread. I told her that white bread had wheat in it. She came back with, "well then why do they call wheat bread wheat bread and white bread white bread?" :o Really? I mean, she's a nice girl and she's actually pretty smart too...but REALLY?

They're bringing in cupcakes on Wednesday, so I'm sure I'll hear it all over again.

I would think work would be the hardest place to be gluten free. People look to food as a way of taking a break, of getting together. Back when I was in the working world, food was always in the break room: "Hey! Jeri brought doughnuts!" and if you didn't eat any, "What, are you on a diet?" (Implication: You're making us feel like gluttonous pigs!) At work it's all about fitting in, not being conspicuous...at home it's less like that. And friends, if they are real friends, will not make you feel weird for having a true medical reason for avoiding gluten.

And yeah, I've gotten the "You can have white bread, right?" from my very sweet neighbor. She told me I should get "bread flour" to make my bread, since it's not whole wheat. :blink:

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And now I am really dreading the neighborhood block party tonight. There will be food I cannot eat, so I will just eat a Larabar or something and drink my water while peope say, "Haven't you tried the pasta salad yet?" or "Do you want one of these brownies?"

We're supposed to bring a dessert; my husband will just pick something up at the store, because I cannot be bothered to bake something I'm not eating! :P

When you get more comfortable with gluten-free cooking, try making a gluten-free pasta salad to share and a gluten-free dessert to share. I do this all the time and my food always gets eaten up. I even send gluten-free desserts (usually a berry cobbler) to my husbands work parties when he needs to bring something, since I won't have wheat flour in my house.

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I have to say, it's only been about a week for me, but I had two functions this weekend, and my friends and family have been fantastic. My sister is a mother through and through, and she was so sweet, checking labels, looking stuff up on line, asking me what was okay, etc.

At my friend's house, it was more luck than anything else. But my friend asked, can you have potatoes? can you have corn? He didn't mind me asking about ingredients. And the only thing that was on the table that I couldn't have was garlic bread and pasta salad. When the bread came my way, I said "No thanks" and that was that.

But like I said, it's early, so I'm sure I'll have my share of annoyances soon.

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I have to say I have been really lucky at work. Sometimes they forget, but for my birthday they got me one of those fruit flower bouquet things so I could eat for my own birthday celebration!!

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I got this one recently:

"This is totally OK for the kids to eat, I made sure and only used graham crackers" :huh:

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I've told this before, but it's been a while now. At work, I just can't make them understand. One lady was sitting at my desk eating french bread. I asked her to leave my desk, "Why, I'm not dropping anything?" I told her you can't eat bread without dropping crumbs, especially french bread, besides the fact, while eating it she was touching my calculator, my phone, my desk, my pens...everything. She put the bread away, I walked away to get some toweling and cleaner for my desk, came back and she was eating it again.

Often times they will have crackers, apples, and cheese. They get upset with me because I will not eat with them. I do not feel safe, the CC issue is always there with them.

Some people will understand in time, some will never get it!!!

Deb: This woman sounds like she's on a "passive/aggressive" power play with you. Are you sure she's not sabatoging you deliberately? -- Deb

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So yesterday i took my kids with me to visit our neighbors (elderly, husband has MS and doesn't get out much, sweet, adorable people we love). The wife is always offering me something to eat--usually cookies or quick bread or something. They asked how I was doing and I just said I hadn't been feeling well lately, but had stopped eating wheat and noticed a big change, and that my doctor was okay with it (he did say that if it made me sick, to not eat it).

The husband seemed to understand, but the wife...well. She knows I love to bake and said, "Oh, that means you can't eat your own bread!" She then went on to advise, "I get this flour at the store, it's called "bread flour" and I bet you could use that, it's not wheat flour." I told her that all flour, unless it says otherwise, is made from wheat. She said, "really?" :o

Later she asked, "What about cookies, you can have cookies, right?" I said, no, not if they were made with flour.

Then she brought out a box of cranberry quick-bread mix (I think Krust-ease or something) and said, "Here, read the label, see if there's anything you can't have." I took it and pointed out, "Wheat flour, first ingredient."

Meanwhile her husband was just shaking his head in disbelief. :lol: She's not unintelligent, it's just I think honestly the general public doesn't understand that wheat is in practically everything. And it's not "Whole wheat" that's the problem (that's what she thought about the bread flour issue). There's just not anything out there that the average person hears about gluten intolerance or celiac.

She did also ask, "Well, just a little bit won't hurt you, right?" Her husband said, "Hey, if she's feeling good without it, she don't need to eat it!" :D

Nope, people dont get it. My own father thinks..OH...you just cant eat bread...big deal....I could have smacked him!!!

FEW, realize whats all has gluten in it. My staff member tonight got a quick lessen and she was shocked. lol

HUGS

Rebecca

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I got this one recently:

"This is totally OK for the kids to eat, I made sure and only used graham crackers" :huh:

Hahahahahaha!! Thats like saying to a person with a peanut allergy.."I use smooth not crunchy" hahahahaha.....

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Recently I tried to book a tour with an American tour company. The price of the tour included lunch (a choice of chicken, beef or turkey sandwich, a muffin and a piece of fruit). I asked the operator if he could organise something else for lunch as I cant eat wheat.

He replied with:

"Hmm, the rolls are wholmeal. What if we make the sandwiches with white bread, can you have white bread?"

!!!

I was a little shocked actually.

I ended up getting a salad - that was TOTALLY covered in Ranch!! Boo!

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Some of my family members also think it is funny to poke fun at cross contamination. They say things like, "What if the clerk touched some gluten two years ago?"

UGH! My mom always does that. The other day we were at the park, and I said I had a headache, and she said, "oh, maybe you're allergic to air"

<_<

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UGH! My mom always does that. The other day we were at the park, and I said I had a headache, and she said, "oh, maybe you're allergic to air"

<_<

Proper response: "No, I think I'm allergic to you."

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Deb: This woman sounds like she's on a "passive/aggressive" power play with you. Are you sure she's not sabatoging you deliberately? -- Deb

No, she isn't that smart. She truly does not understand the "why's" of gluten intolerance. She honestly does not think she is dropping any crumbs, and she does not understand how easily she could make me ill. She would be very upset if she really did make me sick, yet she can't understand the importance of not having gluten in my work area...none of them do.

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Reminds me of my MIL...instead of saying "I made this really good _________, but I know you can't eat it!", it's "This is really good, but I know you WON"T eat it." She thinks I do it to get attention or to get people to feel sorry for me. She never will use the word "CAN'T" :)

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We were going to an all inclusive water park for a day with my son last spring break. I called numerous times to discuss the meal situation. They have a policy of no outside food in the park. On one of my calls I thought I had really explained myself well and this time the woman was going to check on the exact menu (previous calls had always ended in them not giving me the menu but telling me they would accomodate any dietary need I just needed to check in at the restaurant a little early). So the lady comes back on the phone and sounded so excited.

"We have a very extensive menu and I'm sure your son will be able to find something he can eat. Our breakfast menu is:

Bagels

Croissants

Assorted Pastries (which she listed something like 10 different pastries)

Donuts

Assorted Muffins (again, big list)

Oh, and fruit - oranges, bananas, and apples"

Nope, definitely didn't get it. But she was right. He could eat the oranges, bananas and apples. B)

I also had a very close friend who we moved away from several years ago (so now we are just phone friends and she doesn't see the day to day stuff) tell me the other day how easy my life was getting compared to what it was like back in January. She didn't mean it badly at all, but she just didn't get how challenging being the mom of a young Celiac can be. The day before her comment I had spent 5 hours being a gluten-free mom - 2 putting together an info sheet for school, 1 at the school with teachers, and 2 in the kitchen preparing meals. As you know, that's just normal. Shopping, cooking, preparing treats for EVERY kid in the class's birthday, etc. takes a lot of time and effort. I do not complain about our new lifestyle. It's 100% worth it and I truly don't mind, but I'd never say it was "easy". The next day I sat with my son on the bathroom floor while he had D and then worried all day about how he was doing at school, and, and, and. You all know how it is. It's doable. It's something to be thankful for because it's an illness that can be fixed without chemo or surgeries. It's rewarding (to see the transformation that occurs as you or your child become healthy). But "easy" isn't one of the words I'd use to describe it.

On the other hand, some of my son's friends' parents have really "gotten" it. One friend went online and instead of sending cookies or cupcakes to school for their birthday, they sent tootsie rolls, snickers, and other gluten-free candy! :D

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Seeing this has made me feel all warm and fuzzy! :lol:

Bear in mind I am always open and clear..upfront about this..saying..

'I can't eat wheat products with wheat, oats, barley and rye in them..

but I've had..

What? Why can't you have pizza? What is in pizza that you can't have then?

'Oh just have one sandwich..it won't hurt your diet'

'Brown bread is ok right?'

'oh just peel the pastry bit off it'

'yup..the sauce is fine for you..I made it with flour and..........what? Flour isn't ok? Why is that then?'

They are gettig used to me at work..ish..now..but I made a huge batch of 'from scratch' gluten-free lasagne last weekend and I had loads of complaints as they all said it smelt so good that I took some in for those who complained..

They happily ate it and said it was really good..and then asked why it was that I could have lasagne when I can't have pasta? One woman said 'you obviously are trying to be a 'celebrity fad diet type' or something because you DO REALLY eat pasta etc..cos there IS lasagne sheets in that!!' (while laughing and wagging her finger at me) ..to which I mentioned that it was gluten-free lasagne....

I have been refued at restaurants because they think it's a nut allergy and won't serve me even a plain salad in case I suddenly die..yes..they told me this...! :rolleyes:

Some of my friends are great though..and my ex boyfriend..all fairness to him..there were two cooking sauces I loved..his idea was to get teh sauce and then go buy al the spices and make it from scratch with cornflour....which is now why I make the best lasagne in town! :D

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What is with the wheat/white bread thing?? Maybe it really is that one actually says wheat on the label and the other merely says white that throws those who don't know their way around a kitchen.

My family is very supportive. I don't mind giving them a "no thank you" if they've slipped up and made something with one of my no-nos in it. I do get tired of explaining why I think something has gluten in it, but I know that most of them truly want to know so they can avoid having that when I'm around. Sometimes it does feel like they think I'm making stuff up, but I try not to think about it.

My friends, otoh, don't all know about all of my food issues and their various implications. I've wanted to get some of them together and give them a speech on what I can't eat and why, and would they please not make a big deal about my not eating anything but the fruit at potlucks, picnics, etc. As someone else said, it's neither a fad nor a lifestyle choice any more than looking both ways before crossing is not a lifestyle choice. It's bad enough that I can't eat any of that tasty food, but to have to explain over and over why I can't eat all of that rich, aromatic, drool inducing stuff is adding insult to injury.

Interesting thread! It's nice to know I'm not alone. :)

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Ok, so we're going to inlaws to eat, they appear to understand celiac disease & diet, etc.

We enter home, go into kitchen and

SIL is peeling potatoes at kitchen table WHILE eating (gluten) Italian bread in handfuls.

I cringe :ph34r::angry: and say to her "The bread crumbs are going to get into the potato pot!" She

retorts: "The crumbs will go down the sink with the water when I rinse the potatoes off." :o

This was the last time we ate at any relative's house for any reason. :angry:

In general, in all aspects of life, she also happens to be a "passive/aggressive" witch (and I mean that with a "B" and not a "W" in

the word. ;)

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Its getting to the point for me that i cant even eat out...im so frustrated. I ate at salad creations and got glutened. I think maybe a crouton crumb or something sneaked in. I was diagnosed a month ago and so far i have been sick at least once a week. I guess i am lucker then most because i get sick for about a day or two for recovery. I have read that some are sick for a week.

I am starting to realize that i might need to get my own toaster and butter tub...etc. I didnt take cross contamination seriously for me at first but after being sick 4 times in a month i am realizing that i need to be more careful.

Even whole foods hot bar you see wheat in the sauces next to the plain rice...and there is possible contamination for the super sensitive folks like me.

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You're exactly right! AND I get so tired of seeing the words "natural flavors" on everything without any further information :o .

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You're exactly right! AND I get so tired of seeing the words "natural flavors" on everything without any further information :o .

Yeah, and then they act like you're the idiot for asking about it. "We never hide gluten behind other names." Oh, okay. Like I was supposed to know that and assume that your company is a humanitarian organization. :rolleyes: Right.

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    • Will my doctor test me? So many symptoms...
      Remember that you have to be eating a normal gluten diet for the testing so don't cut back & don't stop eating it. Make sure they do the full, current celiac panel: Anti-Gliadin (AGA) IgA
      Anti-Gliadin (AGA) IgG
      Anti-Endomysial (EMA) IgA
      Anti-Tissue Transglutaminase (tTG) IgA
      Deamidated Gliadin Peptide (DGP) IgA and IgG
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      Also can be termed this way: Endomysial Antibody IgA
      Tissue Transglutaminase IgA 
      GLIADIN IgG
      GLIADIN IgA
      Total Serum IgA 
      Deamidated Gliadin Peptide (DGP) IgA and IgG
    • Will my doctor test me? So many symptoms...
      Yep, get tested for celiac.  You have plenty of digestive symptoms to indicate it.
    • Weird Reaction
      Hi Richie, It definitely sounds like you got glutened.  Over here in the USA they can't label foods gluten-free if they are made from gluten ingredients, period.  So your barley drink would not be labeled gluten-free here.  A while back I read something about the testing for gluten in foods not being as accurate for detecting barley hordein as it is for wheat gliaden.  So the gluten-free testing (if they do any) that your drink maker does may not be reliable. Celiac disease is an autoimmune condition.  So the immune system starts reacting when it detects gluten and damages the gut lining.  An immune reaction is not like a food poisoning event, where most of the damage is only while the food is actually in your system and then ends.  An immune reaction can continue for weeks to months.  The immune system is really quite serious about protecting our bodies.  And since it is designed to detect and attack micro-organisms it reacts to tiny amounts of gluten. Wheat, barley, and rye are the main gluten grains that affect celiacs.  But some celiacs also react to oat gluten.  
    • Weird Reaction
      Hi Richie,  Glad you are feeling better. I wondered have you been officially diagnosed with coeliac disease? Just wondering as you say you are anaemic, that is one of the symptoms of coeliac disease, along with other general malnutrition. You don't need to eat meat for iron though, you can get it from non-heme foods, like spinach or parsley. Just be careful with the drink with barley, it may be that you only start to have symptoms if you consume a lot of it, but if you have coeliac disease the damage is still been done to your gut regardless of whether you have symptoms or not, which will ultimately lead to malnutrition as well as other things.
    • Weird Reaction
      I think, if all this is caused by glutening, it could be that it takes a while to work its way out of your system. I should explain about what I said about organic broccoli.   I don't have a problem with organic food,  in fact, I buy organic milk and carrots all the time, but I don't want to try organic broccoli in case it is the broccoli that is the problem, not the insecticide.    I meant to ask, are you a coeliac or is it non-coeliac gluten intolerance that you have?   I wonder what sort of support you get in Australia for these conditions once diagnosed?   Here in the UK I think the understanding is that if new gastro symptoms have lasted for more than six weeks it needs to be investigated.   I have found this very helpful advice because I do get odd twinges of pain and sometimes changes in bowel movements (sorry if tmi) but they rarely last more than a couple of weeks.   If they do persist I mention it to my gastroenteroligist and he follows it up.  I recently had a sigmoidoscopy for left sided pain and they found nothing.  Turns out it was to do with lactose intolerance, but I always imagine the worse!    
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