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
      131,857
    • Most Online (within 30 mins)
      7,748

    LowellFrancis
    Newest Member
    LowellFrancis
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
    • Jillian83
      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.