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

Hi! Support And Friends Needed.


catie

Recommended Posts

catie Newbie

Hi.  My name is Catie and I have been sick a long, long time.  I will try to condense my story and make it as clear as possible.

 

My tummy has always hurt.  At 25, it got dangerous.  The abdominal pain was really scary.  The med that helped was Bentyl, but it was not a cure or even that effective.  Sometimes, I would take a prescription pain killer leftover from my DH's kidney stones.  Mutliple MD's, a positive celiac panel,  following a strict gluten free diet DID NOT improve  the pain AT ALL, and then I landed in the hospital.

 

The gastro told me that I did not have celiacs and I went back on gluten.  The major trigger I could identify for the previous pain was Splenda.  Came off Splenda, and the pain *mostly* went away, but I have diarrhea  EVERY DAY.  This went on for 2 years.

 

Fast forward to the end of January.  I had a checkup at my regular MD's office and I asked him if my tummy pain would ever go away.  He reminded me I had tested positive for celiacs and suggested I go back to gluten free.  

 

In the past week and a half, the diarrhea has been remarkably better, but not gone.  Bowel distention is improved, my girlfriend says it looks like I lost at least 2 inches around the middle.  I am doing more than just gluten free because I really, really want to feel better.  

 

So, I made eggs last night in a cast iron skillet.  Awful.  DH has cooked many a pancake in it.  The pain was so bad that 2 Bentyl took the edge off but I still was super restless, could barely sleep and awoke to MORE tummy pain.  Egad.

 

I understand that this is a process and takes time  I am ok with that.  I feel like I need an older sister.  Does that make sense?  Just a friend to kind of mentor me thru this process.  I am grateful to have found this forum but am nervous about posting as I don't really know the etiquette of forums boards.  Is it OK that I am a newbie and I start a thread, that kind of thing?

 

 


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



Celiac.com Sponsor (A8-M):



kareng Grand Master

Welcome. Lots of new people start new topics/ threads! Much better etiquette than hijack someone else's thread . :)

Start here for some basic info:

https://www.celiac.com/forums/topic/91878-newbie-info-101/

1desperateladysaved Proficient

Welcome,

 

You find out, on the forum, that other people have experienced the very things you do.  We all bumble around a bit at first and learn the hard way!  I wish you well on your recovery.

 

D

eers03 Explorer

You're in the right place!  This place has provided peace of mind many a time.  Post any time!

NoGlutenCooties Contributor

Hi Catie and Welcome!

 

You're definitely in the right place!  Collectively, we can be your big sister and get you through this!  The first few months are the hardest but once you realize how much better you feel you'll know it has all been worth it.  Poke around on the forums - there is tons of good information in here - and post whatever questions you have. 

catie Newbie

Thanks y'all.  I really appreciate it!  xo

WinterSong Community Regular

Welcome to the board! You will always find friends and support on this forum. Many of have been on this site for years because we find this kind of community support is incredibly important and also because it so important to help out others - we were all in your shoes at one point.

 

Remember: it may be hard now, but once you get the hang of it you will feel amazing!!

 

Welcome! Search around on the board and feel free to ask questions!


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



Celiac.com Sponsor (A8-M):



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 posted a topic in Coping with Celiac Disease
      0

      Curious question

    2. - Amy Barnett posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Question

    3. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      Alarming

    4. - Maggieinsc commented on Scott Adams's article in Winter 2026 Issue
      5

      Celiac Disease and Longevity: Can Treatment and Healing Improve Long-Term Survival?

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

    • Total Members
      133,318
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Jmartes71
      So I've been dealing with chasing the name celiac because of my body actively dealing with health issues related to celiac though not eating. Diagnosed in 1994 before foods eliminated from diet. After 25 years with former pcp I googled celiac specialist and she wasn't because of what ive been through. I wanted my results to be sent to my pcp but nothing was sent.I have email copies.I did one zoom call with np with team member from celiac specialist in Nov 2025 and she asked me why I wanted to know why I wanted the celiac diagnosis so bad, I sad I don't, its my life and I need revalidaion because its affecting me.KB stated well it shows you are.I asked then why am I going through all this.I was labeled unruly. Its been a celiac circus and medical has caused anxiety and depression no fault to my own other than being born with bad genetics. How is it legal for medical professionals to gaslight patients that are with an ailment coming for help to be downplayed? KB put in my records that she personally spent 120min with me and I think the zoom call was discussing celiac 80 min ONE ZOOM call.SHE is responsible for not explaining to my pcp about celiac disease am I right?
    • Amy Barnett
      What is the best liquid multivitamin for celiac disease?
    • Jmartes71
      I've noticed with my age and menopause my smell for bread gives me severe migraines and I know this.Its alarming that there are all these fabulous bakeries, sandwich places pizza places popping up in confined areas.Just the other day I suffered a migraine after I got done with my mri when a guy with a brown paper bag walk in front of me and I smelled that fresh dough bread with tuna, I got a migraine when we got home.I hate im that sensitive. Its alarming these places are popping up in airports as well.I just saw on the news that the airport ( can't remember which  one)was going to have a fabulous smelling bakery. Not for sensitive celiacs, this can alter their health during their travel which isn't safe. More awareness really NEEDS to be promoted, so much more than just a food consumption!FYI I did write to Stanislaus to let them know my thoughts on the medical field not knowing much about celiac and how it affects one.I also did message my gi the 3 specialist names that was given on previous post on questions on celiac. I pray its not on deaf door.
    • xxnonamexx
      Thanks for the info. I have been taking the ones you recommended but when I saw this I was curious if it was something else to add to the journey Thank  
    • Jane07
      I used to be able to get the Rivera yougut i havent been able to get it lately. I like getting it did say it did say gluten free. I just looking for a good yogurt that gluten free that i can add some fruit and nuts to any suggestion would be helpful  thanks
×
×
  • 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.