Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Why Many Do Not Participate


Corrine

Recommended Posts

Corrine Rookie

I was looking back on former topics to learn how to use the board effectivly and saw that in July and April there was discussion on lack of use by members who are either new or old members. Well, for me I do not post much as when a question comes to mind I find that there is usually an answer to it already, this is good. But I have a lack of understanding of chat rooms and the computer in general. I have to say that I find this all intimitating. I'm afraid of sounding stupid or spelling words wrong or of getting no response to my postings which has happened or of posting a inquiry in the wrong place. I don't know how to get involved with a discussion. Do I need to be on line when others are? Does time zones make a difference? I don't think that I'm the only one to lack confidence.

I am a slow learner and have difficultly in understanding the different symbols such as the suitcases and the acronyms (I saw that thread(know what that means now) and found it helpful).

I hope this gives a little insight as to why many don't get readily involved.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Canadian Karen Community Regular

Hi Corrine!

I can totally understand how you feel. I was in your shoes before also. But the more you are on the board and slowly get your feet wet by participating little by little, you will get more comfortable. I have gone from being terrified to post for fear of sounding stupid to now being a moderator..... If you are worried about making mistakes or sounding silly, please don't. I haven't seen once here on this board where someone was either made fun of, berated, or ignored. I think you will find a bunch of really helpful, understanding people here who will walk you through it no problem and will always be there to help out whenever you need it.

Also, remember that our motto is "No question is too stupid to ask".... We have all been down this road and know how overwhelming this diet can be at the beginning and there are some questions we have asked in the past that we though "Sheesh, this sounds like a stupid question but I have to find out......" I think you will find you will get responses that are both welcoming and helpful....

I hope this eases your fears and worries and I also hope that you will become a contributing member of the board......

Take care,

Karen

BabySnooks Rookie
I was looking back on former topics to learn how to use the board effectivly and saw that in July and April there was discussion on lack of use by members who are either new or old members.  Well, for me I do not post much as when a question comes to mind I find that there is usually an answer to it already, this is good.  But I have a lack of understanding of chat rooms and the computer in general.  I have to say that I find this all intimitating.  I'm afraid of sounding stupid or spelling words wrong or of getting no response to my postings which has happened or of posting a inquiry in the wrong place. I don't know how to get involved with a discussion.  Do I need to be on line when others are?  Does time zones make a difference?  I don't think that I'm the only one to lack confidence.

I am a slow learner and have difficultly in understanding the different symbols such as the suitcases and the acronyms (I saw that thread(know what that means now) and found it helpful). 

I hope this gives a little insight as to why many don't get readily involved.

<{POST_SNAPBACK}>

Hi Corrine,

Canadian Karen is right--everyone who posts on this sight is very understanding and we all try to help each other. Without a site like this, Celiac would be a very, very lonely disease. I am new to this site in a past few weeks and I still am not quite sure what I am doing. But I plow through because I need all the info I can get on this terrible disease.

I still don't know how to post a question to just all members, so I click on reply near someone's name. I have no clue if I am doing it right or wrong.

Canadian Karen Community Regular

Hi BabySnooks!

Don't worry, I am still trying to get used to this new format, and as for blogs, I won't even go there yet!!!! LOL! :P

To start a new post (to ask a fresh question instead of just adding onto the end of another), first pick the forum category it would fit in, i.e. technical help, coping with, post-diagnosis..... Then, once you are that topic section, on the right hand side (you probably have to scroll over for it, as I have to.....) you will see "New Topic" and "New Poll". If you click on the "New Topic", a blank box will come up for you to compile your post. Once you have finished, go down to the bottom of the page, you will see "Post New Topic" or "Preview Post". The preview post is for you to see what your post will look like once it is posted (to see if you have done quotes, colours, smilies, etc. correct). Once you are satisfied with your post, just click "Post New Topic" and your topic will be sent. Then the moderators take over and pin the topic once it has been viewed.

I have been on here for a year now and I still haven't mastered the "quotes" thing..... lol :P

Take care,

Karen

ianm Apprentice

This message board is one of the best ones out there. This forum is about celiac disease, not who has superior geek skills. You will not get flamed if you ask a "dumb" question or post something in the wrong spot. If anybody does that I don't think Scott will put up with that kind of behavior for very long if at all. The moderators will move your post to the correct thread. Most message boards have more members that do not participate than those who do. That is just the way it works. There are some aspects of this board that are not real user friendly but those things are not easy and can be very expensive to change.

  • 2 weeks later...
Guest BellyTimber

Hi Corrinne,

I think those are very perceptive observations.

It's so good to just read where everyone else is at.

The odd time a message gets overlooked I think are purely accidental. Just ask an extra time!

As for spelling that's one of the areas where we let everybody be themselves, I'm hardly even a regular myself but I think I would be right in saying that much.

Again welcome to look and post or not,

JLK Rookie

Corrine,

I would hazard a guess that if a post goes unanswered it may be due to a high volume of traffic on the board so that the message gets "lost" under new or continuing threads... Many folk on these forums don't have a great deal of time when they sit down to the computer, and may not look at posts three or more pages down.

You needn't worry about others being online at the same time or time zones. Just post and we'll see it when we do get online.

I am new to this forum and have had good responses to my questions but one thing I know I am doing "wrong" is making my posts too complicated with too many questions... Some questions get answered some do not. Try, try again :rolleyes: All of us are here for help and to help, so please share your questions and any solutions you have discovered with us!

Judi


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



celiac3270 Collaborator

And if you ask a number of questions and a few don't get answered, post back and ask about those few again.

If you find that your post is moving to later pages and you didn't get the answer to your question, make a reply in it to move it to the top like..."I'd appreciate anymore insight into this" or something. The common web term would be "BUMP" (meaning, you want to bump the post to the front to get more replies, but don't worry about cyber terms...we don't really use those anyway.

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,609
    • Most Online (within 30 mins)
      7,748

    Gwen Gatzke
    Newest Member
    Gwen Gatzke
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.