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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.

Giving Lip-Service To Eating Gluten Free Makes Me Sad
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27 posts in this topic

At at party at a friend's house last night, among people I don't know well, the subject of eating gluten free came up. I don't know why, might have been my explanation of why I really couldn't eat much of the available snacks and why was I asking about ingredients? Innocent enough, right? No one gave me a hard time, but a couple of people proclaimed their gluten free status as well. Ok, a bit of camaraderie, no problem.

But it ticks me off when these same people snacked on pot stickers, and taquitos, and brownies, and drinking beer... One woman said to me, "Oh, I avoid wheat, but can't resist these!" Good for her, for trying to improve her health, but she shouldn't call herself gluten free! Don't get me wrong, I was quite happy with the fresh berries and the Lays potato chips (which said gluten free on the package!), although I was a bit worried about gluteny hands dipping into the berry bowl.

I don't expect answers here, but why do people do that? It just makes it harder for those of us who truly are gluten free, and work hard at being so, and who pay the consequences of failure. I don't mind talking about being gluten intolerant, figure it educates people, but I don't like having the issue diluted by people who think it's a fun thing to do.

Sorry for the rant, but the experience irritated me. I try to avoid being labeled as the odd one of the group, generally just quietly manage my needs as best I can. But if gluten free is going to be spotlighted by others, then they ought to honor the code. At least IMHO, anyway.

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I TOTALLY understand, it makes me so mad! Or, my favorite is "Oh, there's no wheat in there so I can eat it" by the people who are supposed to be gluten-free..and then they totally just eat it.

CELIAC IS WHEAT, BARLEY and RYE. Idiots. Then people look at ME like *I'M* being overly picky and snarky about my food because the fake gluten-free eater is like "Oh a little bit won't hurt me!"

Excuse me, but I am 6 months pregnant and DO NOT need a reaction right now. THATS why I am so careful!!!

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It does make things difficult. I was in a two week class with someone who also had celiac and was supposed to be gluten-free. But she ate the sausage biscuits someone brought one morning, the pasta that someone brought for lunch one afternoon, etc, because she just couldn't resist.

She was also telling ANY and EVERYONE who would listen that she had celiac and how sick she had been, blah blah blah. Then she told me she couldn't believe that I was so strong to not eat the stuff around us. I told her I couldn't afford to be sick, so there was no bite that was worth it to me. I really didn't care what she ate, but it made it hard for me to decline food that someone had obviously spent a lot of time on (someone made a cake), when she told the same story as me but ate just a tiny piece.

I feel your pain! <_<

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I was at a potluck with two other "gluten free" people. Both had hot dogs with buns and finished off with birthday cake. :blink:

The only reason people like that bother me is that they cause other people not to take us seriously. Oh well, it doesn't matter too much in the grand scheme of things. Only once a month or so do I even eat food I didn't prepare with my own hands and then I do my best to ensure it's safety. At least the fakey-gluten-free people have caused the gluten free market to expand somewhat.

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My issue is with people who call eating gluten-free a "fad"....fad? :blink: Celiac disease almost killed me :blink:

As I often say...there needs to be a better understanding of what 'gluten intolerant' really means. I always cringe when someone says it's an "allergy"....sigh...

I suppose it's easier than explaining "It's an autoimmune response to the...." by then, their eyes have glazed over like a donut... :lol: :lol: :lol:

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....then they ought to honor the code

I'm new here and have a question. You refererd to a code. Can you tell me what the code is?

Thanks!

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I'm new here and have a question. You refererd to a code. Can you tell me what the code is?

Thanks!

I think she just means if you say you are gluten-free then demonstrate gluten-free. don't say it while munching on a wheat-filled cookie.

I think we are still working on the secret code and handshake. ;)

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It means that if people are going to proclaim that they're gluten-free, then they need to be gluten-free. In public, anyway. <_<

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My issue is with people who call eating gluten-free a "fad"....fad? :blink: Celiac disease almost killed me :blink:

Like my chiropractor ... or should I say my ex-chiropractor. Last time I was there I commented that I was really sore from accidentally eating some gluten. He went off on this tangent about how his wife has gone on this gluten-free kick so now she only makes their cookies out of barley and spelt and oats .... and this celiac thing is such a fad and next month it'll be something different. Then when I insisted that all those things his wife cooks with have gluten and that celiac is really serious and I can get sick from a few crumbs he called me a freak. :o

Time to shop for a new chiro.

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Like my chiropractor ... or should I say my ex-chiropractor. Last time I was there I commented that I was really sore from accidentally eating some gluten. He went off on this tangent about how his wife has gone on this gluten-free kick so now she only makes their cookies out of barley and spelt and oats .... and this celiac thing is such a fad and next month it'll be something different. Then when I insisted that all those things his wife cooks with have gluten and that celiac is really serious and I can get sick from a few crumbs he called me a freak. :o

Time to shop for a new chiro.

I saw a recipe in a magazine where the cook said she was cooking for gluten-free people and she used spelt instead of wheat...um, hullo??? :blink:

he called you a freak?!! :huh: well, he's a (fill in the blank)...... :D

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I think we are still working on the secret code and handshake. ;)

gosh, we're STILL working on that handshake??? who's in charge!!?? :lol:

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Is a fist bump OK?

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A fist bump followed by the dusting of imaginary crumbs.

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I have a colleague who is also celiac and I've watched her more than once just scrape the toppings off a sandwich. And she's confessed to me that she drinks beer every once and while. And then she'll look to me for sympathy on those days when she's not feeling well because she thinks that as a celiac, I can relate. Um no, I can't. I NEVER cheat, so I really have no sympathy for someone who makes themselves sick!

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A fist bump followed by the dusting of imaginary crumbs.

I think you may have it! Do we swipe our hands, flat palmed? You know that sort of " Good riddance" sort of thing?

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Or we may have to do a palm reading :blink:

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Oh yes, I can TOTALLY relate. I call these people "gluten lite". Really what some of them are trying to do is to cut down on carbs. Pasta, white bread, etc. Which isn't a bad thing in itself. Just don't call yourself a celiac! And don't say you're gluten free! :angry:

I went to a church meeting/social event on Friday night (social part first, meeting following, lol). The host got food from a local restaurant and asked for things specifically gluten free because there are two of us in the group. We got there and she announced that she's decided to go gluten free also because after talking to a friend she's thinking that some of her symptoms sound like gluten (fatigue, body aches, bloating).

So in the course of the conversation she said that she always "kind of rolled my eyes at people who said they needed to stop gluten, but then I've been reading..." um.. :blink: So that means I've been just making it up all this time? And the other woman in our group who was 100% better within a week -- that was all in her head?

Well, I really think that this woman will be one of the "gluten lite" ones, but we will see...

What bothers me the most about these people is that there might be waiters in restaurants who see them asking for gluten free, but then see them eating a salad with croutons, or just taking the croutons out, or getting a burger and removing the bun. Then the waiter might get the wrong idea about what "gluten free" really means for those of us who HAVE to be truly gluten free.

Yeah, I hear you. :blink:

On the other hand, as someone said in this thread, it has caused more and more gluten free products to be available. I'm thinking especially of the baking stuff, which for me is the most problematic. Everything else I cook is easily made gluten free (most of it is already anyway), but those chocolate chip cookies... lol. :lol:

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Like my chiropractor ... or should I say my ex-chiropractor. Last time I was there I commented that I was really sore from accidentally eating some gluten. He went off on this tangent about how his wife has gone on this gluten-free kick so now she only makes their cookies out of barley and spelt and oats .... and this celiac thing is such a fad and next month it'll be something different. Then when I insisted that all those things his wife cooks with have gluten and that celiac is really serious and I can get sick from a few crumbs he called me a freak. :o

Time to shop for a new chiro.

My daughter was diagonosed with Diabetes and I was talking to the diabetic dietician about how I had gone gluten free and how much better I was feeling, and thought that my daughter also had problems with gluten grains. She said gluten-free eating was just a fad and the chances of me or her having it were almost zero. She said that Celiac Disease was very, very, very rare. They fed her wheat while she was in there, not even bothering to check to see if she had celiac disease. It seems like hospitals are so far behind the times.

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My daughter was diagonosed with Diabetes and I was talking to the diabetic dietician about how I had gone gluten free and how much better I was feeling, and thought that my daughter also had problems with gluten grains. She said gluten-free eating was just a fad and the chances of me or her having it were almost zero. She said that Celiac Disease was very, very, very rare. They fed her wheat while she was in there, not even bothering to check to see if she had celiac disease. It seems like hospitals are so far behind the times.

It's just appalling that people in the medical profession still think celiac disease (or gluten intolerance) is rare!!! :angry::blink: for pete's sake. Read a medical journal once and a while...stay current!! OMG--this makes me nutz!! :blink:

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Thanks for the moral support! And yes, when I referred to "the code", it's sort of like honor among thieves, or at least among gluten free folk. I do like the idea of the secret hand shake, though, with the dusting off of hands.

I appreciate having a place to vent my frustrations, among people who understand!

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I don't know how many times I've dealt with similar issues in the past year of going gluten free. No matter how many times I've explained to people what Celiac and gluten intolerance (and wheat allergy) are, people just can't seem to wrap their minds around it! Even my own mom doesn't quite get it yet, even though I've shared everything I've learned with her. I've had my aunt, who was inspired to go gluten free by my example, insist that she can have spelt flour because it "doesn't bother her" and "it's a distant cousin of wheat"...and supposedly some lady wrote in a book that it's okay for most gluten intolerant people! :rolleyes: This same aunt also does not have her own dedicated toaster or condiments. I love her to death, but sadly, she lets her daughter do all the research instead of doing it herself. What is also frustrating is my own sister's attitude. She has been showing many symptoms of a gluten intolerance or Celiac for a long time, but refuses to change her diet. Every time she makes something like cookies, she gets sick. Her stomach is super sensitive like mine. We're both lactose, dairy intolerant. Yet, she thinks she's fine because she "eats a lot of bread". I don't think she knows how miserable she really is. :huh:

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I don't know how many times I've dealt with similar issues in the past year of going gluten free. No matter how many times I've explained to people what Celiac and gluten intolerance (and wheat allergy) are, people just can't seem to wrap their minds around it! Even my own mom doesn't quite get it yet, even though I've shared everything I've learned with her. I've had my aunt, who was inspired to go gluten free by my example, insist that she can have spelt flour because it "doesn't bother her" and "it's a distant cousin of wheat"...and supposedly some lady wrote in a book that it's okay for most gluten intolerant people! :rolleyes: This same aunt also does not have her own dedicated toaster or condiments. I love her to death, but sadly, she lets her daughter do all the research instead of doing it herself. What is also frustrating is my own sister's attitude. She has been showing many symptoms of a gluten intolerance or Celiac for a long time, but refuses to change her diet. Every time she makes something like cookies, she gets sick. Her stomach is super sensitive like mine. We're both lactose, dairy intolerant. Yet, she thinks she's fine because she "eats a lot of bread". I don't think she knows how miserable she really is. :huh:

I don't know how old your sister is, but mine is like that too and I think that feeling bad after just ends up being normal. It's sad to see that, but I'm not sure there is really anything we can do.

And by the way I took my daughter to the local hospital and the triage nurse did not know what celiac or gluten was, I had to tell her how to spell it for the chart and the one doctor we saw wasn't much better. I don't think it helps that we don't have test results though, our doctor actually diagnosed us originally over the phone based on symptoms and dietary response, not worth going back on gluten for tests though.

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What gets me the most is hearing "Oh, I wonder if that's what I have cuz I'm always bloated, etc?" Really, people??? What I always say is "if you suspect you may have intolerance to wheat, I suggest you see a GI doctor and if that's not possible, cut it completely out of your diet and if it makes a difference, you most likely do have an issue". At first it felt good that I wasn't instantly labeled a freak and someone could relate..now it just irritates me.

We celebrated my (non-celiac) son's 15th birthday this weekend with a yummy gluten-free chocolate cake and cupcakes. Not one single crumb was left over! B)

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My issue is with people who call eating gluten-free a "fad"....fad? :blink: Celiac disease almost killed me :blink:

As I often say...there needs to be a better understanding of what 'gluten intolerant' really means. I always cringe when someone says it's an "allergy"....sigh...

I suppose it's easier than explaining "It's an autoimmune response to the...." by then, their eyes have glazed over like a donut... :lol: :lol: :lol:

Oh yeah I know what you mean about the glazed over look.. lol I've run across several people that are 'fake gluten free' Why would anyone do this if they didn't have to? That's all I wonder.

I've learned to make chocolate cupcakes and other goodies and I bring them to get togethers and no one knows the difference until I pick one up and take a bite and then I get the 'You can't have that...' I just laugh and say 'yes I can, I made them and they're gluten free' Surprised looks from all because they couldn't tell the difference.. heehee

Two can play at this game!!! LOL LOL LOL

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I have a colleague who is also celiac and I've watched her more than once just scrape the toppings off a sandwich. And she's confessed to me that she drinks beer every once and while. And then she'll look to me for sympathy on those days when she's not feeling well because she thinks that as a celiac, I can relate. Um no, I can't. I NEVER cheat, so I really have no sympathy for someone who makes themselves sick!

Same with me, no patience for that at all. My doctor's nurse asked me if I ever cheat and I said 'Absolutely not!!, the pain I experienced for the last three years and the nausea I had for my entire life is not worth it whatsoever' She just looked at me and smiled.

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