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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? - 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 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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So what is up with the critcal replies? Is anyone here a doctor or a specialist in gluten-free living? Aren't we here to help one another, to give advise on what worked for us? Relay info that we find informative and helpful?

We are a little different in our own needs and reasons for being here. Just because something doesn't work for one person doesn't mean it won't work for another. So I don't see the point of tearing down other people and the posts put on this forum.

If you don't agree then put your own advise on.

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So what is up with the critcal replies? Is anyone here a doctor or a specialist in gluten-free living? Aren't we here to help one another, to give advise on what worked for us? Relay info that we find informative and helpful?

We are a little different in our own needs and reasons for being here. Just because something doesn't work for one person doesn't mean it won't work for another. So I don't see the point of tearing down other people and the posts put on this forum.

If you don't agree then put your own advise on.

We are indeed, a varied group. Which, many times makes for an interesting dialogue.

Just like many of our friends in "real life", our cyber peeps can have a passive approach and others have more of an acute point of view.

Not quite sure what I'm trying to say, but yes...many time more carefully chosen words would be more appropriate. B)

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Maybe we should keep in mind that we are talking to people who are either sick, scared, confused, feeling helpless, or all of the above. We wouldn't be snarky to a person in real life who was feeling that way. We would treat them gently.

I guess because we can't see each other's faces and hear each other's voices while we type that sometimes we forget.

Or then again, maybe the criticle comments are coming from someone who is sick, scared, etc. Let's all cut each other some slack. We're all in the same leaky boat together.

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To me, starting a catch-all thread like this hurts the tone of the board. I don't find global statements that are mostly untrue to be very constructive. This is one of the strongest and most cohesive Internet communities I've ever been involved in.

I think if you have issues with a particular post, the most constructive thing to do is to ask what the person meant in the thread. People here aren't usually deliberately mean but a lot of us are brain-fogged, anxious, depressed, grumpy, tired, irritable, or just plain sick. Sometimes a post doesn't come out quite as intended.

If you have consistent issues with a particular poster, this forum does have an ignore function you can access through your profile.

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This is a rather "general" post to make, but I am guessing that something in particular has upset you that has prompted this topic.

For the most part, the people on this forum are generous and encouraging, but if someone has been overtly rude or otherwise has violated board rules, you can always alert a moderator via PM to the situation.

Otherwise, I have to agree that:

(1) people have been very ill or are still under the influence of gluten and may be irritable, out-of-sorts or confused. (I always give people the benefit of the doubt on that one-- having been there/done that :rolleyes: )

(2) sometimes what we think we have expressed so eloquently and politely is interpreted by a reader in another way.

Ask for clarification if you are not sure. I have found myself suddenly engulfed in a squabble, wondering why the poster is so darn mad at me and everyone else, only to have the poster apologize to us all because she was having a crap day and did not mean to be so gruff.

And finally, from reading many of your posts and conversing with you on here, I think it is safe to say you are a caring person and if you are like me, sometimes we can have hurt feelings over something someone says and take it personally. Don't, hon---most people do not mean anything personal by what they write and I have learned that it is best to just blow it off and chock it up to "personality quirks". :) And, some people are just abrupt in their writing style.

We are a diverse bunch and there are bound to be some misunderstandings. People have varying opinions. Sometimes you just have to "agree to disagree" and leave it be.

Best wishes,

IH

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I was a little taken aback by your post. While there have been some occasional heated discussions which the mods are pretty good about shutting down when they become entirely unproductive (sometimes heated discussions can be beneficial), I have found this forum to be one of the better, more rational open-subscription (anyone can join) forums I've seen in my 25+ years out in cyberspace. And one of the best at self-policing that I've ever seen.

In the last couple years here I've seen ups and downs in the tone of the posts and quality of information (occasionally contributing to the down side myself I'm sure :D ), and while we may (or may not) be in a down cycle I'm guessing there is more to your post than meets the eye. So...what's the scoop? What are you seeing that's bothering you?

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Is anyone here a doctor or a specialist in gluten-free living? Aren't we here to help one another, to give advise on what worked for us? Relay info that we find informative and helpful?

An additional thought--- because this part of your post has been overlooked.

Offering advice based on experience is helpful, yes. And someone should qualify it as such--"this is MY opinion and it worked for ME kind of thing."

Offering information from various internet sites is a different issue altogether. <_<

A credible source may be helpful, yes. But some people post links to various wild theories, people claiming to be doctors who have a cure for celiac disease, :rolleyes: blah blah, blah... and often, these are unvalidated sources --and that is NOT helpful. (this is what we all discussed on Josh's recent thread.) And some blog to their heart's content out there in cyberspace and just because you have "ideas", it does make them facts. So, it is essential that we provide valid info, not someone's theory.

If a member posts articles or links to websites, he/she should be very sure of the authenticity of it--or else risk the inevitable GOOD question---"And where did you find this information?"

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Hmmm, I am relatively new to the board but I have to say I kind of agree with AVR1962. Seems just recently there's been quite a lot of slightly biting posts. I've seen them and the negativity has bothered me but I generally prefer to avoid such things online so I stay out of it and don't reply. There are lots of reasons why people might...annoy...with their over-the-top anxieties or baseless claims (which are being offered from a genuine place of trying to help) but it seems to me that sometimes there are people who are all too ready to pounce with the claws out instead of in. There are gentle ways to tell someone they're wrong (and don't get me wrong, I've seen that in action too!) but just lately there's been some thinly veiled yuckiness on here. Which I only say because I have found this to be the singularly best forum I've been a part of with the most amazing people in it. It's a shame when people inject a yucky feel to their replies, of being superior or what have you.

I hope you can get the gist here of what I'm saying, I am having a hard time finding the right words. Yuckiness isn't quite right ;).

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I think I get the gist of what you're saying, and we sometimes all do need to get a gentle reminder that, as Ellen says, we shouuld "be kind to one another" :)

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One other point I forgot to make: The whole thing about backing every little thing up with official research. Research in the area of GI is really far behind what many of us on here already know. If we only followed published research, then those of us with NCGI would not have "existed" before 2009, and largely still don't if you look at the medical community at large. So while I always appreciate having research to back things up, for me I think there is a grayer area where people's personal experience is really valuable. If all I wanted was PubMed docs I could get that elsewhere. What I am here for is living breathing individual experiences that fill in the blanks where current research is lacking. Official research is icing for me, not a requirement...and if someone tells me that slipping b12 tabs into my bra each morning will give me a boost, I'll be sure to research it myself before proceeding! :)

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One other point I forgot to make: The whole thing about backing every little thing up with official research. Research in the area of GI is really far behind what many of us on here already know.

I think what we on the board try to do is get someone to cite their source. It's up to each individual person that's interested in the topic to go to the source and decide for his or herself if they feel it's valid enough to believe.

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Personal experiences are very valuable but some people think their personal experiences should generalize to everyone. They can get pretty aggressive about it too. There is also a lot of misinformation out on the Internet. (Like the famous tea bag rumor.) Asking people to back up their facts and generalizations helps with those situations.

Also, remember that most people are not particularly comfortable finding stuff in the peer-reviewed literature. I get a lot of positive feedback about the PubMed links I dig up. :)

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I think what we on the board try to do is get someone to cite their source. It's up to each individual person that's interested in the topic to go to the source and decide for his or herself if they feel it's valid enough to believe.

We all post things that are generally accepted without explicitly citing the source every time.

It is when someone makes a claim that is outside the generally accepted knowledge that we insist that you either provide a credible source, or note that it is your own opinion and not proven fact.

For example, some people have an intolerance to MSG. That includes SOME people with celiac disease. If you assert that NOBODY with celiac disease should consume MSG, well, you need to provide a credible source--MSG may or may not be good for you, but it is definitely gluten-free.

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...and if someone tells me that slipping b12 tabs into my bra each morning will give me a boost, I'll be sure to research it myself before proceeding! :)

Smart Girl! :lol:

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What I am here for is living breathing individual experiences that fill in the blanks where current research is lacking.

As Peter stated, it is perfectly okay to post experiences, opinion, speculation, so long as it is clearly stated as such, and not stated as facts. It is the assertion of facts which are not generally accepted which needs to be supported with credible citations.

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I think what we on the board try to do is get someone to cite their source. It's up to each individual person that's interested in the topic to go to the source and decide for his or herself if they feel it's valid enough to believe.

EXACTLY my point!

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I think what we on the board try to do is get someone to cite their source. It's up to each individual person that's interested in the topic to go to the source and decide for his or herself if they feel it's valid enough to believe.

Oh don't take me the wrong way - I definitely see the value in asking people to cite their sources. It's all about how it's asked... some people are sounding a bit militant and I think it might disuade some people from bothering to post for fear they will be called upon to defend every little point. I definitively have held back from posting to certain conversations because I just don't have the energy to spar, and that's the tone that's been set on a couple of posts recently. I assumed that was what AVR 1962 was referring to.

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Oh don't take me the wrong way - I definitely see the value in asking people to cite their sources. It's all about how it's asked... some people are sounding a bit militant and I think it might disuade some people from bothering to post for fear they will be called upon to defend every little point. I definitively have held back from posting to certain conversations because I just don't have the energy to spar, and that's the tone that's been set on a couple of posts recently. I assumed that was what AVR 1962 was referring to.

Well, I see your point, but we are a mixed bag of folks, after all, with different styles. I know that when I've been glutened I have a hard time being anything but straightforward, which could easily seem militant in typing. I try to assume that others are the same, if a post seems just a bit snarky to me. If you see a post that you feel is beyond the normal snarkyness, feel free to either report it, or respond to the person politely explaining how their post came across. Often the person will apologize and say that they didn't mean it that way, or didn't realize how harsh their words sounded. Very few truly obnoxious people stick around for long - most really want to help, and be helped in return.

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What I am here for is living breathing individual experiences that fill in the blanks where current research is lacking. Official research is icing for me, not a requirement...and if someone tells me that slipping b12 tabs into my bra each morning will give me a boost, I'll be sure to research it myself before proceeding! :)

:) smart chick!

The trick is for the reader to be able to differentiate between what is the "norm" and what is "unusual" in people's experiences.

You are wise enough to know the difference, obviously. :) --(although the real trick, Aly-- is to put the B-12 tabs in between your toes, not in your bra! ;) )

And you are so right---there is still much to be learned about gluten intolerance and celiac. We do rely on each other for knowledge that is lacking.

As many have tried to point out already, not all people reading this site are clear-headed. They are seriously ill. When I first came on, I read a few things that were misleading. (info about fruits and vegs, canola oil and food labeling). I thought I had all kinds of intolerances, was being glutened by things that could not possibly harm me, etc.--based on well-meaning but ill-informed people. How is a newbie supposed to know? Fortunately, other, more experienced posters cleared things up, but I was confused and needlessly alarmed. I am not stupid, but at the time, I was ill and malnourished and desperately trying to get well and would have taken any advice at all.

So when someone questions a post or a statement that seems unfounded, it is not always meant to be critical, it is a request for clarity for the protection of the general membership.

If someone is downright rude or snarky, well, that's a different matter and is unacceptable and that should be addressed. The average person will apologize if they are told their tone is out of line.

But I have also seen many cases where the poster was not at all rude, but the READER misinterpreted the intention of the post. I have also seen people on a gluten challenge for testing purposes be very defensive and emotional while posting and when they admit it, we all say "oh that explains it!" :huh: All is forgiven! :)

The written word is so easily misconstrued.

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:) smart chick!

The trick is for the reader to be able to differentiate between what is the "norm" and what is "unusual" in people's experiences.

You are wise enough to know the difference, obviously. :) --(although the real trick, Aly-- is to put the B-12 tabs in between your toes, not in your bra! ;) )

And you are so right---there is still much to be learned about gluten intolerance and celiac. We do rely on each other for knowledge that is lacking.

As many have tried to point out already, not all people reading this site are clear-headed. They are seriously ill. When I first came on, I read a few things that were misleading. (info about fruits and vegs, canola oil and food labeling). I thought I had all kinds of intolerances, was being glutened by things that could not possibly harm me, etc.--based on well-meaning but ill-informed people. How is a newbie supposed to know? Fortunately, other, more experienced posters cleared things up, but I was confused and needlessly alarmed. I am not stupid, but at the time, I was ill and malnourished and desperately trying to get well and would have taken any advice at all.

So when someone questions a post or a statement that seems unfounded, it is not always meant to be critical, it is a request for clarity for the protection of the general membership.

If someone is downright rude or snarky, well, that's a different matter and is unacceptable and that should be addressed. The average person will apologize if they are told their tone is out of line.

But I have also seen many cases where the poster was not at all rude, but the READER misinterpreted the intention of the post. I have also seen people on a gluten challenge for testing purposes be very defensive and emotional while posting and when they admit it, we all say "oh that explains it!" :huh: All is forgiven! :)

The written word is so easily misconstrued.

It's so true, sometimes we read things into people's posts that aren't there. Generally I have to say that this board is overwhelmingly positive, friendly and supportive. I think it's a special place that way. I have been on another board that a handful of people turned into a pretty negative place to be. So my view just may be a bit colored by that experience!

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Oh and thanks for the heads up that the B12 should be between my toes! I will give that a try. :)

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I've noticed a couple of posts too, that seemed to be worded a bit harshly..and like Aly,in some of them I read the posts but didn't put my 2 cents worth in. I don't think AVR is just imagining it?

I debated about mentioning one in particular..but here goes, because one stood out to me. The thread on alcohol is one of them. She posted a link about how alcohol *could* interfere with some digestive/absorption issues. The study was mainly about alcoholics, but several points in it could apply to a damaged intestine, whether by alcohol or another substance? Just something to ponder?

I bit my tongue on that topic.

There are a couple of other topics as well.

I find this board to be a fabulous fountain of information. I appreciate the wealth of info here, along with the anecdotal posts of things that have helped others in their journey back to health. I'm deeply grateful for these posts.

If someone makes an outragious claim I'm glad that the level heads here debunk it. BUT if someone runs across some info or a theory and wants to add it for discussion or consideration, or they have found something that helps them in their healing, or have found little things that they felt delayed their healing I find that useful too.

We are all on a similar, yet different journey because our bodies, symptoms, and the amount of healing we need to do is so varied. Some of the helpful info here isn't easily found by a newly DXed, confused and frightened person, who's just gone into overwhelm.

I know the written word can be taken differently than intended. We can't hear the person's "tone" or read their facial expressions, or body language when reading the written word. I know sometimes we try to "condense" the point we are trying to make and that might come across as terse when it's not meant to?

So IMO we are all here to find answers and give answers. We are all a wonderful bunch..doncha think?

((group hug))

I'm also SO glad that I don't have to keep the B12 in my bra. It fell out..and landed between my toes! LOL :D

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If it was my reaction to a 15-year old review article that set this off (which I suspected from the moment I saw the post), you might notice I apologized in the thread.

I thought you had to crush the B12 and sprinkle it into your bra as powder? :D

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I thought you had to crush the B12 and sprinkle it into your bra as powder? :D

You people!!! :angry: :angry: :angry: :angry:

If you were to bother to educate yourselves and read all the science I have read but can't be bothered to look up right now, you'd realize that NONE of your B12 remedies will work UNLESS you expose the tablets to the full moon as close to the spring equinox as possible AND you can only purchase them from the site that charges you twice as much, but guarantees that they've been chanted over to remove residual evil from the manufacturing process (touching metal and all that).

No wonder none of you are getting any better. <_<

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