Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

To All Our Guests....


Lisa

Recommended Posts

Lisa Mentor

To all of those who read, learn and are searching...please feel free to join us. It's affirming to know that you are not alone, to find others who can help trouble-shoot your concerns, get assistance from those who can point you in a direction or just to seek comfort in those who have walked in your shoes.

Not all answers can be found here, but it's a good beginning.

Join us! :D

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Financialman Newbie

Hi Lisa,

I am brand new to this forum but not to Celiac disease. I finally decided to get involved in a Celiac forum and I am totally amazed with how many people are involved in this one. I hope to be able to add my voice and help all the newbie Celiac members.

Link to comment
Share on other sites
Lisa Mentor

Hi Lisa,

I am brand new to this forum but not to Celiac disease. I finally decided to get involved in a Celiac forum and I am totally amazed with how many people are involved in this one. I hope to be able to add my voice and help all the newbie Celiac members.

GREAT! Looking forward to it! :D

Link to comment
Share on other sites
jerseyangel Proficient

Welcome Financialman! :D

Link to comment
Share on other sites
  • 3 weeks later...
mom2three23 Newbie

I was recently diagnosed and am just trying to get my bearings and came across this site! I am so happy I could cry . . . I have so many questions, and yet feel I'm so 'green' I'm not even sure what questions I should be asking. Short of a diagnsis - of which I basically handed to the doctors after years of being sick, at times quite seriously - the doctors haven't been much help at all. So I have become an internet junkie! SO happy to have "found" you!

Link to comment
Share on other sites
Lisa Mentor

I was recently diagnosed and am just trying to get my bearings and came across this site! I am so happy I could cry . . . I have so many questions, and yet feel I'm so 'green' I'm not even sure what questions I should be asking. Short of a diagnsis - of which I basically handed to the doctors after years of being sick, at times quite seriously - the doctors haven't been much help at all. So I have become an internet junkie! SO happy to have "found" you!

WELCOME!!!

No matter where you have been, there is someone here that has walked in your shoes. :)

So glad you have joined us.

Link to comment
Share on other sites
Judy3 Contributor

I've been on this site for a few months since my diagnosis and you guys have been very helpful and friendly. I'm doing excellent now on the gluten free diet or 'the celiac diet' as my gastroenterologist refers to it. Welcome to the new people, we need all the voices we can get so this isn't so difficult.

:D

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Bookworm25 Newbie

Hi,

I have always been coeliac so in one way it is good as I do not know what I am missing, if indeed I am missing anything at all! I do however get a twinge of jealousy as my friends order anything they like from restaurants and their food shopping trips are quicker as they do not have to check all the ingredients but it certainly could be worse!

I have only recently joined this site and already there is a lot of help on here!

Natasha

Link to comment
Share on other sites
Financialman Newbie

Hello to everyone. It looks like community is growing,slowly, but growing. I have been spending time looking around for the last two weeks or so and there is a wealth of information here. We need to recommend this forum to all our Celiac friends. :)

Link to comment
Share on other sites
Financialman Newbie

I forgot to ask Jerseyangel how you were able to have over 18,812 posts on this forum since 2005? :)

Link to comment
Share on other sites
kareng Grand Master

I forgot to ask Jerseyangel how you were able to have over 18,812 posts on this forum since 2005? :)

She talks a lot ( like me) :ph34r:

Link to comment
Share on other sites
psawyer Proficient

I forgot to ask Jerseyangel how you were able to have over 18,812 posts on this forum since 2005? :)

Over 6,600 of them are in one topic. :blink:

Link to comment
Share on other sites
jerseyangel Proficient

I forgot to ask Jerseyangel how you were able to have over 18,812 posts on this forum since 2005? :)

:lol: As my friends have pointed out (and thank you both so much...Peter with statistics, even... :blink: )-- I do like to talk....but silly-ness aside, back in 2005 I had been undiagnosed and sick for over 20 years before finding out what the trouble was. By then, I had been told it was all in my head for so long and kept so much to myself about dealing with the symptoms that when I stumbled onto this site while looking up an ingredient and saw people actually talking about this--I wanted to be a part of it.

The only thing was--at that time I was not computer literate at all (a slight problem :D ) --I was using the kids' computer to try to look up that ingredient and when I finally came up for air after reading practically the whole forum--I had to ask my son how to register and post. :P

Needless to say, I caught on pretty quickly--which I guess is where the 18,000+ posts come in. :rolleyes: I will forever be grateful for the camaraderie, support, information, and finally friendship I found here so I stay on and try to make myself useful in between the fun.

Link to comment
Share on other sites
mushroom Proficient

Over 6,600 of them are in one topic. :blink:

Dang! What other statistics can you come up with?? :o

Link to comment
Share on other sites
Financialman Newbie

Thanks for the response Jerseyangel and your friends psawyer and kareng. Not to ignore psawyer (4,000+ posts is also a lot) but kareng has over 3,000 posts in little over a year which is also amazing. What's your story?:D

Link to comment
Share on other sites
kareng Grand Master

Thanks for the response Jerseyangel and your friends psawyer and kareng. Not to ignore psawyer (4,000+ posts is also a lot) but kareng has over 3,000 posts in little over a year which is also amazing. What's your story?:D

I'm trying to beat Patti (Jerseyangel)! Or as some would say - I talk too much!

Link to comment
Share on other sites
lexusca Rookie

Hey there I was daignosed this morning and found this forum, any and all info I can get is great. Glad there is a place out there for this

Link to comment
Share on other sites
jerseyangel Proficient

Hey there I was daignosed this morning and found this forum, any and all info I can get is great. Glad there is a place out there for this

Welcome lexusca, and be sure to let us know how we can help :)

Link to comment
Share on other sites
RoseM Newbie

Hi. This is my first post. I'm so excited to have found this forum! :) I was actually diagnosed about a year and a half ago. Ever since then I've sorta been "going it alone" as far as Celiac and the gluten free diet goes. (I mean, I do have a really supportive extended family but I don't get to see them very often. In my day-to-day life, I don't know anyone with Celiac Disease or anyone on the diet.) So it's really awesome to have found a whole community of people who understand. And there's so much information here. I wish I'd found it sooner. :)

Link to comment
Share on other sites
mushroom Proficient

Glad you decided to join us, Rose. Welcome, and let us know if there is anything we can do for you.

Link to comment
Share on other sites
kareng Grand Master

Hi Rose!

Link to comment
Share on other sites
  • 3 weeks later...
Tutti Frutti Newbie

Hi everyone :) I am so happy to have found your forum. For months I have been praying to find out what is "wrong" with me. I do not know anyone with Celiac Disease so I have found many of your posts to be helpful. I have not been diagnosed, I am a student and only have the basic student insurance which means that I can only go to the clinic on campus.

I have experienced muscle twitching, pain and numbness. After eating a meal I get a fever then chills. One day I am constipated and the next day I have dia.... I have lost muscle mass and my hair has been falling out. I feel tired but I can't sleep.

When I eat dairy or soy I get sick and break out so I suspect that gluten could be a problem too. All of this has wrecked my self esteem because I appear to be a pessimistic,crazy person with an eating disorder. Everyone thinks that I must be making up my symptoms.

I am eliminating gluten from my diet. This is the first week and I already notice no flushing or fevers after eating.

Thanks again :)

Link to comment
Share on other sites
  • 2 weeks later...
Terri O Rookie

Well imagine that!!! I go to search around the forum (after reading everything in a couple of places) and I find that you are all here! This forum has been a Godsend to me and I thank all you knowledgeable folks for making it so. I have found many answers just by reading! The links people post are fascinating and helpful too. It is so helpful to know that I am not alone in this! THANKS! Terri O

Link to comment
Share on other sites
  • 2 months later...
sandsurfgirl Collaborator

Hi. This is my first post. I'm so excited to have found this forum! :) I was actually diagnosed about a year and a half ago. Ever since then I've sorta been "going it alone" as far as Celiac and the gluten free diet goes. (I mean, I do have a really supportive extended family but I don't get to see them very often. In my day-to-day life, I don't know anyone with Celiac Disease or anyone on the diet.) So it's really awesome to have found a whole community of people who understand. And there's so much information here. I wish I'd found it sooner. :)

You may even meet some real life friends from this board. Two of my greatest and most wonderful friends I met from this very board! We go out for gluten free girls nights and gripe about celiac on the phone and it's great.

With all the info I get here I recruited a celiac. I got a friend to realize that she and her kids needed to go gluten free. They couldn't afford the testing and had insurance issues. So they are healthy and doing great now gluten free and we have gluten free playdates.

Link to comment
Share on other sites
Alex'sMum Newbie

Hi :)

My son (9) has just had a positive blood test for coeliac and is waiting for the biopsy. In the mean time I've been reading everything I can. It's been quite a shock, but this forum has been a real help. Reading peoples posts, and realising we're not alone in this and we'll get the hang of it has really helped. My daughter and I are being tested tomorrow, but I'm not worried anymore - we'll deal with this as a family anyway.

Thanks for being such a friendly supportive community :)

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,057
    • Most Online (within 30 mins)
      7,748

    paulaglover
    Newest Member
    paulaglover
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
    • knitty kitty
      @Shireen32,  Take some deep breaths.  Your labs are fine!  Your tTg IgA is so low!  Well done!  Your endomysial IgA is fine.  There's not a level on the endomysial test.  It's just "yes or no" for if you have celiac disease.   No, it's too early to call it refractory. What are you eating?  Please tell us more than meat and veg. Do you consume dairy? Do you consume processed gluten free foods?   Are you taking any prescription medications, herbal supplements, vitamins and minerals?  
    • Spacepanther
      thank you knitty kitty I don't have a vitamin deficiency and I supplement omegas.  Are there other more mild symptoms that co-occur with your joint pain as well @Moodiefoodie? I am suspicious my own joint pain could be related to another autoimmune issue. I am wondering if it is Crohn's or something similar because I've continued to experience some issues despite having normal celiac antibody levels. What have you considered?
×
×
  • Create New...