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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.

Good Idea
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15 posts in this topic

Dear Celiac.com Message Board Member:

Just a quick note to thank you for helping to make our message board an overwhelming success, which is demonstrated by the board's statistics (see below).

A recent analysis has determined that 20% of our board users are making around 90% of the posts, and a significant number of you have never made a post. If you fall into this category I encourage you to participate in what has become the most active online celiac disease community on the Web--the Celiac.com Message Board/Forum.

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Good idea, Scott! ;) I bet we'll see a flood of newbie postings over the next few days :D

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I agree, celiac3270, it is a good idea.......

I hope you are right about more posts from the lurkers. I think the more input, the better for all of us...... ;)

Karen

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A recent analysis has determined that 20% of our board users are making around 90% of the posts,

That's crazy! there are a lot of people that don't post!

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wow...come on everyone post....we don't bite....usually :lol:

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It seems like a lot of people register and just don't come, though...not necessarily lurk. After all, when you look at the members who are on, they don't show many. Well, unless the people don't bother to log in and just view as guests. There are always many guests.

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lurk... that is such a funny word when you think about it :lol:

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I think some members at least come on here but don't log in. I used to do that before I started posting. Now I keep it on a mode that remembers my login on this computer so it never logs out.

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Yes...I've always kept mine so that I don't log in each time (w/ the remember me option)......so much easier than logging in and out all the time. And yes....so many guests on all the time...just a random sample might give you....22 guests, 6 members or something.... my point is, always more guests than members.

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Yep you are right there are usually many more guests on here then members

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I "lurked" for about 6 months before finally joining so I could participate in Molly's science fair survey. I think this will be my fifth post since joining in December. I read the board frequently, usually every day, but rarely post . I have been gluten-free for almost five years (and probably celiac for at least ten more), but I seldom see a topic I can add something new to. I just don't do "ME TOO" posts, they don't seem to add any value.

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I would agree wthat too many "me too" posts is a bad thing, but with something like celiac where people are often pulled by conflicting statements, a handful of them on certain topics can help make readers (particularly newbies) more confident about something.

richard

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When I first joined, I was comforted by the "me too" posts, actually.....

It felt really reassuring to be in an environment where other people posted that they were going through the same things I was. I didn't feel so isolated........ :D

It made me realize that I wasn't losing my mind afterall...... ;)

Karen

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Yea I think that it is good when you have numerous people saying the same thing or agreeing. I know when I was new I was told don't listen to everything you here unless you here it over and over...I found it comforting and it made me more confident about what I could and could not have.

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Also, when you have the medical establishment drilling it over and over again into your head that it is just "all in your head", the fact that you can read other people's posts and feel that they are posting exactly what you are experiencing just reinforces your confidence that you are in fact not crazy. :D

Karen

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Yea...they're probably sometimes good, as long as they don't get too abundant. I think similar posts are most valuable when it comes to reassuring someone or sympthizing with or helping a newbie w/ general gluten-free resources. After all, we all do it differently. I do think, though, that if two or three people say a product is gluten-free, a fourth and fifth person agreeing isn't necessary....anh...whatever. ;)

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    • Gluten ataxia...?
      I was explaining that some people have other trouble that is immune related and caused by eating gluten, but doesn't effect the gut in a noticeable way. According to the paper that I quoted there are some people which have different types of brain problems but don't have inflammation when tested by a biopsy.  The author used the term "non-Celiac gluten sensitivity" to refer to anyone who has any brain trouble that can be traced to gluten but without obvious gut inflammation.  There are a lot of different possible ways gluten can effect the brain some may not be related to the gut.  It could still be an immune system problem.  Normally "non-Celiac gluten sensitivity" refers to just a food intolerance.  Withdrawal symptoms are not normal and could be indicative of an immune system response of some sort, but I don't know for sure.        
    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
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