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penguin

By penguin
in Introduce Yourself / Share Stuff

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Lisa Mentor
Lisa
Posted
Very true...

My personal feeling on all of this--I'm hoping that what others have stated is true, that these things tend to be cyclical. Since this is the first on-line group I've ever been a part of, I'll take their word for it. It's probably a lot like real life with ups and downs :D

This board was so helpful to me in the beginning--at first I was just happy to be getting information on how to live with this disease day to day. Then, I found that I was actually becoming part of this wonderful community. I've made friends here who are as dear to me as any I have in the "real world".

I try to balance my "socializing" with being as much help as I can to the newer members. I volunteered to be a moderator because I was spending so much time here that I thought I may as well make myself useful :lol:

I choose to stay and do whatever small things I can to try and keep this the best Celiac resource on the net--or anywhere, for that matter ;) If all of the people who truly care about the site leave in protest, what are we then left with?

This board was here when I needed it, and I won't forget it :)

I could have not said it better, Patti. :) Ditto for me.

Having no where else to turn, I turned here. I really do not think that I could have successfully dealt with Celiac Disease without the dedicated, caring people here. I have a debt to pay here.....

Lisa

oops, Patti....don't know how that happened. Lisa

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gfp Enthusiast
gfp
Posted
Im only gonna repsond to this point, cuase I think this is very key. I completely disagree with that statement. Food ABCXYZ might be on a list as gluten-free, but in recent days Joe, Tom, Sue, and Sally all tried it and got glutened. That information would not be in a list, and can not realy be gotten any other way then a forum (or local support group). THat information is often far more vaild and real then the lists.

Yes but that is the point, I think we both just see that point differently.

To me that questions other gluten-free (or not) foods by the same manufacturer.

It involves writing to the manufacturer and letting them know... etc. etc. which is why I added the BUT.

Its like the McDo fries.... are they gluten-free?

A simple Yes/No answer isn't so helpful because in general (apart from local specialist knowledge of a certain one) CC is a huge issue. I don't think its responsible to just say "according to ...." the fries are safe because we all know and most of us have had onion rings in our fries (bonus?)

Rikki Tikki Explorer
Rikki Tikki
Posted

Well, I came over from the old board, look at my member number it's 558. I think it was 100 something on Scott's first site. There are now over 10,000 people signed on. That is 10,000 different opinions on something. As a whole I have found a lot of useful information here and will continue to seek out support on this site. It is also fun and most of us have taken part in the funner side of bouncing off silly responses to each other. I think (and remember these are just my thoughts) that again we need to be more tolerant of each other. If there is a post I don't want to see I just won't look, or might look but not respond, my choice. Nobody is forcing me to take part in something. I don't want to see Chelsea go because as a whole I have enjoyed her posts. The flip side of that is if someone wants to take a break for a time why post something that is of course going to cause a ruckus or arguing amongst ourselves.

As with many things in life things change, this is one of them. If I was just diagnosed I would still find a lot of useful information here. I enjoy the different opinions, that doesn't mean that I believe everything I read or act upon everything, but I can choose what is useful information.

Sometimes I think a simple yes McDonalds fries are gluten-free but watch the CC issue would be enough. I know junk food is bad for me but sometimes I want it.

I am thankful we have this site and thankful to the people that have helped me in many ways.

Canadian Karen Community Regular
Canadian Karen
Posted

As you all probably remember, I too had to take a break for a while (go into my famous shell, so to speak), when I was attacked by a few particularly vicious posters while I was a moderator. I completely understand the need to take a break sometimes.

It is true that this forum, or any for that matter, is cyclical. Us dinosaurs have been through it, trust me.

One important point I want to make:

IMO, the MOST IMPORTANT ROLE anybody can play on this forum and in this community is to welcome and be there for the newbies. Everyone I think remembers how scared and lost they felt when first diagnosed or when you were searching for answers. Another plus is if we are there to cushion and support the newbies with compassion and clear, concise information, the end result will be an even better support system base for all the newbies of the future.

I too see many newbies posting and I no longer see the welcoming posts following them and the usual "you will find a wealth of knowledge here and don't worry about asking questions, our motto is that there is no stupid question in regards to celiac", etc. etc. etc......

We need to get back to basics, folks........

Hugs.

Karen

gfp Enthusiast
gfp
Posted
As you all probably remember, I too had to take a break for a while (go into my famous shell, so to speak), when I was attacked by a few particularly vicious posters while I was a moderator. I completely understand the need to take a break sometimes.

It is true that this forum, or any for that matter, is cyclical. Us dinosaurs have been through it, trust me.

One important point I want to make:

IMO, the MOST IMPORTANT ROLE anybody can play on this forum and in this community is to welcome and be there for the newbies. Everyone I think remembers how scared and lost they felt when first diagnosed or when you were searching for answers. Another plus is if we are there to cushion and support the newbies with compassion and clear, concise information, the end result will be an even better support system base for all the newbies of the future.

I too see many newbies posting and I no longer see the welcoming posts following them and the usual "you will find a wealth of knowledge here and don't worry about asking questions, our motto is that there is no stupid question in regards to celiac", etc. etc. etc......

We need to get back to basics, folks........

Hugs.

Karen

Karen,

Much as I agree with everything you said, its also true that celiac disease has changed....

For instance in the old days we didn't have a McDo 'oil' test....

In one way this makes it easy.... one can just folow the official analyis OR the offical McDo position which is i think they may not suitable for everyone ....

I mean, I see Vincents point.. but the problem is that mary, joe and jane all did get sick from McDo's fries and Jim, john and jenny didn't.

In the end if one person posts they are safe because ..... then someone will post "my child is sick everytime"

When I have posted direct info, Ive been accused of being to harsh (cross contamination). If I explain why then its a conspiracy theory and even if I don't post why someone will ask.

jerseyangel Proficient
jerseyangel
Posted

There are still a few of us who do the "welcome" thing. It's important to those of us who have 'been there' to 'pay it forward', so to speak ;)

Canadian Karen Community Regular
Canadian Karen
Posted
There are still a few of us who do the "welcome" thing. It's important to those of us who have 'been there' to 'pay it forward', so to speak ;)

Oh, I agree, jersey, there are those who still do, just not as many as in the past.....

Hugs!

Karen

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Rikki Tikki Explorer
Rikki Tikki
Posted
There are still a few of us who do the "welcome" thing. It's important to those of us who have 'been there' to 'pay it forward', so to speak ;)

I have to agree with our Angel! :D After reading this I went back to the initial forum and found that there is a lot of good information there, that would be a lot of help to new people.

Now KIDS can we just get along, no one is right or wrong, it's one of those things that just is and as with any large group of people we have different opinions.

Just had a dejavu moment, I remember writing those exact words on this site several years ago. How weird is that. Guess it does come and go.

I have to say I read over the weekend where a doctor who did give out bad information: about going off gluten-free for a couple of weeks and how it would cause no lasting harm. Instead of trying to gently educate him he was slammed, I mean slammed and stated he wouldn't be back. That really was not the way to treat him, my feelings on the medical community aside.

Karen: I have seen people answer the newbies with a welcome, much as I love ya, I have to disagree with that statement ;) That being said I have to add the laughter some people have inspired has brought me out of some very dark days :lol:

Let's just be kind to each other, as I taught my children, there is a whole world out there that will be willing to tear you apart, let's not do it at home.

Canadian Karen Community Regular
Canadian Karen
Posted

Perhaps I should be more specific.....

I fully agree that the newbies are "eventually" welcomed to this forum, but there are many that are posted for quite some time before they get replies because too many people are caught up in the "politics" and threads that just seem to go in circles needlessly.

Karen

Rikki Tikki Explorer
Rikki Tikki
Posted
Perhaps I should be more specific.....

I fully agree that the newbies are "eventually" welcomed to this forum, but there are many that are posted for quite some time before they get replies because too many people are caught up in the "politics" and threads that just seem to go in circles needlessly.

Karen

I agree Karen that it does appear that this sometimes happens, I just stay out of those because I feel that those circles are not needless to everyone. Am I making a mess of my thoughts again? B)B)B)

Love the pictures of your boy's, makes me long for mine to be little again. My favorite part of the day was hearing my kids play!

tiredofdoctors Enthusiast
tiredofdoctors
Posted
Personally I find I have learned a lot here but equally I think that means I should now put-back.

If everyone who gets to a certain level of understanding leaves because they find they are putting in more than they receive then truly the board is doomed or it will at best be the blind leading the blind.

I had never thought about it that way. I am guilty of not putting back into the forum with regard to newbies. I have mostly posted in the gab/chat room where I am within my "comfort zone". I have posted on the pregnancy thread, think I may have been of some help, but I have avoided the others for fear of being "blasted". I once had FEAR described to me as False Events Appearing Real.

I am renewing my commitment to the newbies -- because I remember how desperate for help and information I was a year and 1/2 ago . . . and how much help I received. Thanks for reminding me of that. I think I got so wrapped up in worrying about "who was going to say what" and "will I have to defend this?" that I stopped doing what this forum did for me in the beginning. You make a very good point.

dlp252 Apprentice
dlp252
Posted
Just letting you all (that care) know that I'm leaving the board, for now anyway. I just feel that in the last several weeks, the board has moved from a place of support to a place of radicalism. It seems like every other thread is something about a conspiracy, a looming threat, or some evil substance that's killing us all. Sorry, but I'm over it.

This board no longer seems to be a place where the newly diagnosed or the people that suspect celiac disease can come to get information and support and reccomendations. I understand that many people have other health problems, other intolerances, whatever. I understand the need for support from others on these issues, but I see more posts on more threads that have nothing to do with gluten, or even celiac disease and gluten intolerance. Call me crazy, but I'm just so annoyed by it.

So, saying that, I bid you all adieu. I'm leaving, at least for now. I wish you all well.

Chelsea

I care and will miss you and your posts! Hope you don't stay away too long!

jenvan Collaborator
jenvan
Posted

Chel-

I hope you choose to stay and stick with things....those that really need help here are worth it! ...And aside from all the serious reasons, your just a fun girl :)

I really stay away from the political, radical, controversial type threads when I see them coming. My time is limited and so I want to give it to helping people here, my main goal. I try to save the other talk for elsewhere. Its not always easy to avoid the "controversies" though, but one thing that helps me is just having a boundary where I try and steer clear.

If you don't stay :( I wish you much luck and blessing!

eKatherine Apprentice
eKatherine
Posted
Perhaps I should be more specific.....

I fully agree that the newbies are "eventually" welcomed to this forum, but there are many that are posted for quite some time before they get replies because too many people are caught up in the "politics" and threads that just seem to go in circles needlessly.

Karen

I think that one reason newbies' quesstions go unanswered is that the most experieced longtime posters get burnout answering the same question repeatedly. Newer posters without much experience or expertise drop in and try to pick up the slack, but often their information is either incomplete or incorrect. I know my own experience on other boards has been that although a simple question may have one right answer, a series of threads posting the same question may result in lengthy discussions and a variety of answers, as experienced posters may get tired of trying to correct misinformation that is posted repeatedly.

The format of this board is that all questions need to be asked and answered, there being no true sticky ("Read stickies first!") option. There are some boards where the moderation policy is that all repeated questions get merged into another recent thread. I think that gfp's suggestion of having a "searchable list" is a valid one, and could greatly be developed by having moderator-editable documents that newbies could be directed to by a moderator to answer repeated ("I'm gluten-free and still feel bad") or difficult ("How do I interpret Enterolab results?") questions.

gfp Enthusiast
gfp
Posted
I think that one reason newbies' quesstions go unanswered is that the most experieced longtime posters get burnout answering the same question repeatedly. Newer posters without much experience or expertise drop in and try to pick up the slack, but often their information is either incomplete or incorrect. I know my own experience on other boards has been that although a simple question may have one right answer, a series of threads posting the same question may result in lengthy discussions and a variety of answers, as experienced posters may get tired of trying to correct misinformation that is posted repeatedly.

The format of this board is that all questions need to be asked and answered, there being no true sticky ("Read stickies first!") option. There are some boards where the moderation policy is that all repeated questions get merged into another recent thread. I think that gfp's suggestion of having a "searchable list" is a valid one, and could greatly be developed by having moderator-editable documents that newbies could be directed to by a moderator to answer repeated ("I'm gluten-free and still feel bad") or difficult ("How do I interpret Enterolab results?") questions.

Couldn't agree more.... I'm burned out by "is all gain alcohol gluten-free" (because its not a simple answer) .. and about 20 other common questions that have no easy answer but that someone who has less experience (of listening to others here) might post the simple answer.

If the sticky option is used to confirm a post and Scott seems keen to keep it like this then why not a seperate only mods can write thread where we come up with some good answers, agree and then a mod posts them and we can all point people to them.

In many cases the same information is being debated in 3 posts or more at the same time with three diffewrent noobies who deserve better.

TriticusToxicum Explorer
TriticusToxicum
Posted

Non illigitamus carborundum... Sage advice? ;)

Don't go! You will be missed terribly! Your posts are so informative and funny ta boot. Best wishes in whatever you decide.

Rikki Tikki Explorer
Rikki Tikki
Posted
Non illigitamus carborundum... Sage advice? ;)

Don't go! You will be missed terribly! Your posts are so informative and funny ta boot. Best wishes in whatever you decide.

Beautiful kids you have! :D I myself am struggling with my youngest moving out a week ago, actually moving far far away. enjoy your young, they grow much too fast! ;)

It's said we give them wings, wish I had clipped them a little! :lol::lol::lol:

Nulla res carius constat quam quae precibus empta est

TriticusToxicum Explorer
TriticusToxicum
Posted
Beautiful kids you have! :D I myself am struggling with my youngest moving out a week ago, actually moving far far away. enjoy your young, they grow much too fast! ;)

It's said we give them wings, wish I had clipped them a little! :lol::lol::lol:

Nulla res carius constat quam quae precibus empta est

2 1/2 and almost 5 - they act like they have wings - flying off the furniture and all!

Canadian Karen Community Regular
Canadian Karen
Posted
2 1/2 and almost 5 - they act like they have wings - flying off the furniture and all!

Oh boy, I hear ya!

LOL!

Karen

GFBetsy Rookie
GFBetsy
Posted

Has there been any thought about adding a "Frequently Asked Questions" section to the main forum page? The basic questions "What are the symptoms? What about alcohol?, etc.", could be posted there with answers from some of the more experienced members of the forum. Then just make them "non-postable" so they don't get to be 30 page rants . . . it's an idea, anyway.

evie Rookie
evie
Posted
Chel-

I hope you choose to stay and stick with things....those that really need help here are worth it! ...And aside from all the serious reasons, your just a fun girl :)

I really stay away from the political, radical, controversial type threads when I see them coming. My time is limited and so I want to give it to helping people here, my main goal. I try to save the other talk for elsewhere. Its not always easy to avoid the "controversies" though, but one thing that helps me is just having a boundary where I try and steer clear.

If you don't stay :( I wish you much luck and blessing!

Been off the board 2 days celebrating my BD + etc so just caught up on this thread?? <_< all I am going to say is I am so thankful for all the GOOD info I got when I needed so much help a few months ago when DX'd. am so grateful for all the generous people who came foward..and I will still be learning for long time I think. I am very thankful for penguin with her help, I do think we have to think of ourselves & our situations and not stay with a group, thread, forum or whatever past weariness or irritating subject and make things harder for ourselves. We all know Celiac disease is very much a personal problem where WE are in charge of OUR problems and usually we do our own planning, buying, cooking and decision making. so we need to keep some reserves for ourselves. even so i am in agreement with sharing with others and some here have much more knowledge to share than I have. :)

Enuf!! :( I wish Chelsea lots of health, rest and anyhting her heart desires!! :) Wish her the best in whatever she decides to do in the future. Love ya gal. evie

Lisa Mentor
Lisa
Posted

Now THAT is a great suggestion. :) There is one of sorts on the opening page. I remember when I started posting here...and how wonderful to "talk" to someone that actually new what I was talking about.

Lisa

Guest ~jules~
Guest ~jules~
Posted
Now THAT is a great suggestion. :) There is one of sorts on the opening page. I remember when I started posting here...and how wonderful to "talk" to someone that actually new what I was talking about.

Lisa

I am a "newbie" and I think thats a great idea. Its bad enough to feel stupid and shy about asking a question, then getting a ton of "oldies who are tired" making you feel like a dumb*** isn't a great feeling. I like that idea just fine... :D:P Or I guess we could just open the yellow pages after diagnosis and look up celiac for all of our newfound confusion, remembering of course how common it is, and easy to find people who know there stuff.

mouse Enthusiast
mouse
Posted

I love GFBETSY's idea. I hope the moderators run with this idea. It would be so great for the Newby's and great for us. We would answer the unusual ones. And I also think it is necessary that after those threads are created, that no one, except Scott, could post to them.

Rikki Tikki Explorer
Rikki Tikki
Posted
Has there been any thought about adding a "Frequently Asked Questions" section to the main forum page? The basic questions "What are the symptoms? What about alcohol?, etc.", could be posted there with answers from some of the more experienced members of the forum. Then just make them "non-postable" so they don't get to be 30 page rants . . . it's an idea, anyway.

What a wonderful idea! :D

Evie I hope you had a wonderful time!

Julie I hope you have never felt like that, it makes me really sad to think someone new would think any question is stupid.

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Avoid ultra processed products, high in seed oils, refined grains, and sugar. Not just gluten can cause a leaky gut. Fructose, alcohol, egg white lysozyme, emulsifiers, added gums, the list goes on. “8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if it’s gluten or something else but our dish washer doesnt seem to make it completely clean.” If in doubt have your own cutlery set, plate and dishes etc. for your sole use that you handwash yourself. Carry a camping fork/spoon set when out and about if needed. “9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.” That’s a classic OCD fear. Nothing to do with gluten as such. OCD brain is using gluten as the excuse here. I personally have the habit of using a cleansing wipe or dust cloth on my phone, nightly, that eases this sort of worry. For example a micro fibre dust cloth will do the trick, keep one on your nightstand? They are antibacterial as particles cling to the cloth. “10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers.”  NO. But again these OCD thoughts are hard to argue with. If in doubt, just a quick wipe with a cloth daily should suffice. Normal cleanliness practice. But if you don’t, or forget, don’t sweat the small stuff. “11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.” Better if it is gluten free, yes. “12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc.” Still safe if do not explicitly contain gluten grains / derivatives AND if within the use by and use within dates. “I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore.” Really hope these replies to your questions help. Just remember, in the midst of overwhelming thoughts and darkness under OCD clouded vision, the light and sunshine is always shining above. Take a moment or two when you are able in each day - even if it’s last thing at night - to meditate. Focus on something that you enjoy and appreciate. Or sit in a quiet space and try to relax and tune in to your higher self. Ask for guidance and soothing from your guardian angel. Over time it works but don’t worry if your brain is anxious. Eventually it will quieten down some. Try to focus on a real food, nutrient dense and naturally gluten free diet, this will help your anxiety and future health in the long run. Please eat real food - not cornflakes and sandwiches. Eat a steak, eggs or fish for example. Gluten exposures may happen, but don’t sweat it, dust yourself off so to speak, and carry on with a natural gluten free diet as best you can. Own your OCD don’t let it own you! Similarly, when it comes to a gluten free diet for celiac disease, own the process, don’t let it own you! You’re 18. That’s great. I’ve been managing OCD since childhood (in my 40s now. Many years of research, trial and error so to speak. Diet makes a difference. To quote Doc Brown to teenagers Marty and Jennifer, ‘ …your future hasn’t been written yet. No one’s has. It’s whatever you make it. So make it a good one.’
    • maryannlove
      Gluten free thyroid medications

      By maryannlove · Posted

      Unfortunately not going to be able to let you know how Amneal is working because I still have almost 3 month supply of Mylan.  Had annual appointment with endocrinologist last week (though get scripts for blood work more often) and since was on my last refill, she sent new script to pharmacist.  Staying on my Mylan until it's gone.  (I tend to build up a supply because after trying a couple of endocrinologists for my Hashimotos, one finally got my thyroid regulated by my taking only six days a week instead of adjusting the strength which had me constantly up and down.  Will be forever grateful to her.  Apparently high percentage of folks with Celiac also have Hashimotos so all this relevant/helpful on Celiac.com.    
    • KimMS
      Gluten free thyroid medications

      By KimMS · Posted

      Thanks for sharing this! Have you started taking the Amneal? I'm curious how it's going for you. My pharmacy gave me the option of Accord, Macleod or Amneal. I didn't realize that Amneal was formerly Lannett, or I might have chosen that one. However, I did read some anecdotal reports that some people had side effects with Amneal, so I chose Accord. I have been taking it for 3-4 weeks and the past 10 days I have developed extreme fatigue/sluggishness, joint pain and some brain fog. I don't know if it is the new levo med, but nothing else has changed. Has anyone else taken Accord levo? Any issues? It seems to fall into the "no gluten ingredients, but we can't guarantee 100%, but it's likely safe category." I'm wondering if it is worth switching to Amneal or at least getting my thyroid levels checked. If the med is causing my symptoms, I'm guessing it's not because of gluten but maybe the potency is different from Mylan and I need different dosing. Accord was recalled for lower potency, but my pharmacist said the pills I have were not part of that lot.  
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