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

Disappointed


Guest stef 4 dogs

Recommended Posts

Guest stef 4 dogs

I have to say today was my first day signing on. I was really hoping to meet people with similar problems to relate too. Instead I feel locked out! I haven't had any responses to anything! Guess new commers are not welcome! I don't have anyone to relate too that has this disease. I feel like an intrusion to your secret club instead of someplace to come to seek answers. Not a very good forum for any discussion.....

Stef 4 dogs

cujolu@msn.com


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



Celiac.com Sponsor (A8-M):



jenvan Collaborator

Wow Stef, I'd say that is a very unfair judgment. I think this place is very welcoming! I think the majority of peeps check posts at night. And your only thread was on weight loss supplements, which is a very specific topic, and considering most of the people here have been under weight, there is probably only a minority familiar with diet supplements. Be patient...I have had threads that didn't get very many answers either. We're all in this together, hope you choose to stick around!

IronedOut Apprentice
I have to say today was my first day signing on. I was really hoping to meet people with similar problems to relate too. Instead I feel locked out! I haven't had any responses to anything! Guess new commers are not welcome! I don't have anyone to relate too that has this disease. I feel like an intrusion to your secret club instead of someplace to come to seek answers. Not a very good forum for any discussion.....

Stef 4 dogs

cujolu@msn.com

Hi - I think I responded to your weight loss Q on the wrong thread. :unsure: I'll try and repost. I'm an asymptomatic Celiac and at first found some of the info and responses didn't match my needs. But the more I search and post, the more I find that helps. Please think about giving it another try.

Julie

jerseyangel Proficient

Hi Stef--I saw your post, but had no experience with diet pills, so I really did not have any input for you. Like Jen said, maybe tonight when more people are on, someone will weigh in. This forum is not in any way a closed group--everyone is welcome here and we do our best to try and help when we can and make newcomers feel welcome. Especially with a specific question like yours, you need to give it a bit more time--that way more people will have a chance to see it. :)

DingoGirl Enthusiast

Oh dear....did you not get my reply? I responded to your pm, I think it was yesterday, wrote a rather lengthy message. Let me know if you got it or not, it seems to me some people are having trouble with private messaging.....

I was diagnosed just one week ago and cried for the first three days. Thought life was over. But, after 6 days of being gluten-free, I feel really wonderful. Somehow not as lonely, I do take comfort from the posts here and I am VERY new as well. I think it just takes time, and patience, but take heart, I think we will feel much much better, in so many ways! I already feel like a different person! :)

Guest nini

I swear I replied to your post about weight loss supplements...

Every time I come on to check this board there are literally hundreds of new messages to sift through. I work and am a busy mom of a five year old who also has Celiac... sometimes it takes a while for people to see your posts and for the right people to respond to them... (those being someone who would have something to say about the subject)...

This is not a live chat room where things happen instantly, please don't feel like you are being ignored, most of us try to get to the newbies and welcome you as soon as possible, we really try.

ianm Apprentice

It depends upon what time of day you post and what question you are asking. In a forum like this it can take a while for a response.


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



Celiac.com Sponsor (A8-M):



cgilsing Enthusiast

Hi Stef -

I hope you give this board a second try! Sometimes it just takes time for people to see your posts, or like someone else said if we don't have experience with a specific issue we may not respond to it. Overall I think this board is a great asset and really one of the best groups I have seen! Everyone is always willing to offer suppport, and rarely have a I seen judgmental attitudes around here.....actually I think I am more comfortable talking about such subjects as poop and gas on this board than I am with my Dr. :P I know sometimes it can be frustrating if you are looking for answers and they are slow in coming....but hang in there...no one is intentionally ignored around here!

Judyin Philly Enthusiast
I have to say today was my first day signing on. I was really hoping to meet people with similar problems to relate too. Instead I feel locked out! I haven't had any responses to anything! Guess new commers are not welcome! I don't have anyone to relate too that has this disease. I feel like an intrusion to your secret club instead of someplace to come to seek answers. Not a very good forum for any discussion.....

Stef 4 dogs

cujolu@msn.com

Stef,

I'm so sorry about you not getting responces. Please don't feel alone.

I think most have said the reasons for it.

I found when I first went on the forum 4 months ago it was so hard to figure out where to put the question.

I don't know how to figure out where you made your original post, but people who are interested and have knowlege in a area will go to those threads. Did you post your question under medicines?...was it about diet aids..or diet pills? See, I would have skipped by that even if you were new because if i saw it, which i didn't, i would have gone on knowing someone who knows about that issue could be of more help.

I've had 2 posts on 1 for a week and one all day today and 18 people looked at it but didn't post.

Please bear with us. I have rec'd so much help here. I don't know your health issues but I'm over weight, not like most on board but have lost weight just going gluten-free I hope I could help alittle and make yu feel less alone.

:)

Judy in Philly

psawyer Proficient

Aside from this one, you have started two other threads: Any Guidelines for Losing Weight and Kellog's Corn Pops. They have had 22 and 5 replies respectively, as of a few minutes ago. I have not read them, so I can't comment on whether the replies were useful, or even on topic. But you have not been ignored.

Sometimes it takes a while before somebody who has the answer you need sees your post and responds.

We all face the challenge of avoiding gluten, and we share our ideas freely and without judging each other (okay, there are a small number of exceptions to that).

DingoGirl Enthusiast

Um, wait a minute....where is that Kellogg's Corn Pops information? My heart is pounding......can I really eat those? :rolleyes: that would make me extremely happy, and replace my pretzel habit :( at night.....

Guest nini
Um, wait a minute....where is that Kellogg's Corn Pops information? My heart is pounding......can I really eat those? :rolleyes: that would make me extremely happy, and replace my pretzel habit :( at night.....

sorry to burst your bubble, but no, Kellogg's Corn Pops are not safe, they contain Wheat Starch... they used to be safe, but some "genius" decided to "improve" them and added wheat starch about a year ago... some Dr.s are still handing out information to the contrary.

Rusla Enthusiast

Sorry Stef...I have not seen your posts, I can't even remember yesterday. However, I have no info on weight loss supplements.

Give it some time. I have had lots of things that don't get answered and that is because if no one knows the answer or has experience with that particular thing, they won't answer.

darlindeb25 Collaborator

Well Stef--I am guilty of not reading in this forum everyday--I belong to so many other forums. I dont know anything about diet drinks and probably wouldnt try any because of not knowing the ingredients to be safe.. Jen, I must add here that most celiacs are not wieght loss victims. It truthfully runs about half and half. Some of us dont lose when sick because our bodies over conpensate for the problem and the fat stays. We are just as unhealthy as the skinny ones, but in a different way. When I went gluten-free, I lost 60# in the first few months--I was very happy about it. Email me anytime with questions..anyone and everyone--just put in the subject line--celiac forum. Sorry you felt left out hun--Deb darlindeb25@aol.com

Nantzie Collaborator

I just looked at the topic, and it sounds like you're more used to chats than message boards, so I can see how you'd be a little offended when nobody acknowledged your post. Message boards are a whole 'nother thing.

This next bit everybody might find boring, but I think it's really cool.

Message boards are really interesting because they're kind of a throw back to the olden days when there was usually one telephone in a town, usually in the general store. They would put a bulletin board next to the phone. When someone would call the shopkeeper would answer the phone. So say a guy named John Smith lives in the area. His brother Bill calls to tell John that they're coming to visit next month and want to know if John wants their Dad's old fishing pole. The shop keeper would write the message down and pin it to the board. A few days later Bill calls back to see if John's been in to answer the message. Shopkeeper checks the board, and no he hasn't. A week later John's at the store he checks to see if there are any messages, and sees the message from his brother. Then he writes on the paper that yes he does and his wife wants their grandma's blueberry pie recipe. A few days after that, Bill calls and gets the answer and says okay. Shopkeeper writes okay on the paper, and the next time John's in he sees it. Topic complete.

One of my friends has a sister who lives way, way WAY up in the mountains, and they do this the exact same way still. They would have to pay to have phone lines put in up their road, and don't have the money to do that. So for local stuff they use a CB, and for phone calls they drive into town. It's still really common where they live to do it like that.

Also, with this celiac message board, your messages aren't "pinned" on the board right away. Especially when you're a new member. Since this is a moderated board, the moderators have to approve messages before they show up. (Cuts down on spammers and such.) If all the mods are busy sometimes your post won't even show up for a while.

For the first week or so I was on here, I couldn't understand why the topics I posted were taking so long to show up, sometimes a day or more. But then when they finally popped up, there would be a bunch of replies.

BUT... There's a way you can see all the pinned and unpinned messages. Right next to the "My Controls" link, there's a link called View New Posts, which will give you all the topics since you logged on, regardless of them being pinned or not.

Well, hope you stick around.

Nancy

  • 3 months later...
lindalee Enthusiast
I have to say today was my first day signing on. I was really hoping to meet people with similar problems to relate too. Instead I feel locked out! I haven't had any responses to anything! Guess new commers are not welcome! I don't have anyone to relate too that has this disease. I feel like an intrusion to your secret club instead of someplace to come to seek answers. Not a very good forum for any discussion.....

Stef 4 dogs

cujolu@msn.com

I am new on this forum also - I have learned so much here. Everyone has been so helpful. Hang in there - it has taken me awhile to figure how to get around the site but I am learning. LindaLee

  • 8 months later...
gbrad71 Newbie
Hi Stef--I saw your post, but had no experience with diet pills, so I really did not have any input for you. Like Jen said, maybe tonight when more people are on, someone will weigh in. This forum is not in any way a closed group--everyone is welcome here and we do our best to try and help when we can and make newcomers feel welcome. Especially with a specific question like yours, you need to give it a bit more time--that way more people will have a chance to see it. :)

What a beautiful kitty! Yours?

jerseyangel Proficient
What a beautiful kitty! Yours?

Yes--thank you :)

His name is Allo and he's 15 years old. We just love him to death!

He recently went gluten-free himself (easier for me to deal with-he loves it), hence the "sidekick". ;)

Welcome to the board! :)

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      3

      New issue

    2. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      My journey is it gluten or fiber?

    3. - knitty kitty replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

    4. - trents replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      13

      Insomnia help

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,101
    • Most Online (within 30 mins)
      7,748

    Steve Olson
    Newest Member
    Steve Olson
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Jmartes71
      Nope its just me because they can eat wheat and when we use same pans I found out last year thanks to you guys and the autoimmune website im learning,we are not to share though clean, same with sponge. I just wish doctors understood. I am with new gi and new pcp but im falling apart because blood work is fabulous.Im so ANGERY.I have reached out to my local representative, in Stanislaus but its just weekly stuff.Im going to need to physical go down there.Any recommendations on what to say and do because this is absolutely ridiculous. If I didn't have my husband though we are really hurting with one income, I would absolutely be one of the homeless population. Thats alarming begging to be heard about a diagnosis that was given as an adult and dealing with this, medical needs to stick to patients regardless of switching insurance or doctor. 
    • knitty kitty
      If you haven't noticed a difference yet, bump up your Thiamax.  Add in another Thiamax with breakfast and lunch.  Increase the NeuroMag as well.  You can add in another Benfotiamine, too.   Thiamine is safe and nontoxic even in high doses.  Taking more is fine. I had to bump mine up several times when first starting.  It's a matter of finding what works for you.  Everyone is different.   Stick with it.  Some of the health improvements are very subtle and gradual.   Keep going!  You're doing great!
    • knitty kitty
      Hello, @hjayne19, About half of the people with Celiac disease react to the protein Casein in dairy the same as to gluten with the inflammation and antibodies and all.  Reacting to Casein is not the same as lactose intolerance nor a dairy allergy.  Damaged villi are incapable of producing lactAse, the enzyme that digests lactOse, the sugar in dairy.  When the villi grow back, the villi can resume making lactase again.  I react to casein. Keep in mind that part of the autoimmune response to gluten and casein is the release of histamine.  Histamine causes inflammation, but it is also powerful excitory neurotransmitter, causing heightened mental alertness.  Histamine release is what causes us to wake up in the morning.  Unfortunately, excessive histamine can cause insomnia.  Our bodies can make histamine, but foods we eat contain different amounts of histamine, too.  Our bodies can clear a certain amount of histamine, but if overwhelmed, chronic high histamine levels can keep inflammation going and cause other health problems.   I got very weary of playing Sherlock Holmes trying to deduce what I was reacting to this week, so I adopted the low histamine version of the Autoimmune Protocol diet, a Paleo diet designed by a doctor with Celiac, Dr. Sarah Ballantyne.  Her book, The Paleo Approach, has been most helpful.   The low histamine AIP diet cuts out lots of foods that are known to be irritating to the digestive tract.  After a few weeks, when my system was calmer and healing, I could try adding other foods to my diet.  It was much easier starting with safe foods, adding one thing at a time, and checking for reactions than trying to figure out what I was reacting to with so many variables.  I learned to recognize when I had consumed too much histamine from different combinations of foods.  Everyone is different and can tolerate different amounts of histamine in their food.  B Vitamins help us make enzymes that break down histamine.  Vitamin D helps regulate and calm the immune system.  Supplementing with Thiamine helps prevent mast cells from releasing histamine.  Keeping a food-mood-poo'd journal helps identify problematic foods.   I hope you will consider trying the AIP diet.
    • trents
      You may be cross reacting to the protein "casein" in dairy, which is structurally similar to gluten. People assume lactose intolerance is the only problem with dairy. It is not, at least for the celiac community.
    • hjayne19
      Hi @knitty kitty  Just revisiting this to get some help. I found after understanding the extent of my anxiety, my sleep got a little better. Flash forward to a few weeks later I have had a few bad sleeps in a row and I feel desperate for a good nights sleep. I understand worrying about it won’t help but one thing I had tied things too was dairy. Initially when I went gluten free I felt great for the first few weeks then started having some stomach pain. So thought maybe I was lactose intolerant. I started eating lactose free Greek yogurt and that did help take the cramping away I guess. Over the last few months I haven’t eaten it every single day and I went a few weeks without it. The last few nights I did have a small amount with breakfast and noticed that was the only new thing I’ve really added to my diet. I had seen a few other posts about this. Is it possible to still react to lactose free? Would this potentially be a dairy allergy? Or something else. 
×
×
  • 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.