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

New Here


Pisces1974

Recommended Posts

Pisces1974 Newbie

Hi everyone,

My name is Carol. I'm 31 and I've been struggling with gi symptoms since I was very young. I had my gallbladder removed in 2003 due to chronic vomiting. After the surgery I was told that my gallbladder was seriously diseased and definitely needed to come out. Shortly after that the vomiting returned. I was also diagnosed with Sarcoidosis around that time. Since then the vomiting and diarrhea have continued to get worse. Lately I can barely hold anything down and I'm nauseated and have abdominal pain all the time. I went to see the gi yesterday and had the blood tests done right after. Now I'm just waiting. I'll be completely shocked if I don't have celiac disease. I get hot/cold flashes, nerve tingling and pain in my leg, and I have lots of problems with my teeth.

I've been accused of having bulimia due to the vomiting being so bad. If I was bulimic I probably wouldn't be laying on the bathroom floor praying to God for a diagnosis when things get really bad. That's happened many times, when I've been too weak and unsteady to stand up.

I'm actually hoping and praying for a diagnosis of celiac disease. At least then I can start trying to heal the damage. I've already tried some of the gluten-free foods so I would know what to expect. Of course, being a fat girl, I had to go right for the Kinnikinnick brownies lol. They are awesome :D

Sorry this got so long. I just needed to tell this stuff to people who understand.


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



Celiac.com Sponsor (A8-M):



Larteun Newbie

I can relate to you hoping celiac disease is the cause of your symptoms. I just had the test 2 days ago and started a gluten-free right after. I've been through countless testing with no results and after awhile you start hoping the next test will comfirm something, even if serious, just to get a handle on your agony.

I intend to stay gluten-free even if the blood test comes back negative. From what I gather from the helpful people here, the test aren't always that reliable.

Best of luck. :)

julie5914 Contributor

Did you get an endoscopy? With symptoms that bad, I would say you need one and soon.

Carriefaith Enthusiast

Welcome!

Make sure that you don't go gluten free before an endoscopy/biopsy or you may get false negative results.

Sorry to hear you have been so sick.

Pisces1974 Newbie

Thanks for the replies.

The last time I had an endo was before my gallbladder surgery in 03. At that time I was told that I had a hiatal hernia, gerd, and gastritis. Thr gi said that after my bloodwork comes back we'll decide on what scopes to schedule. I'm so sick of feeling like this all the time. It's also a challenge for me at work. I'm a police dispatcher on the midnight shift. It's a small department so I work alone and I'm often the only one in the building (aside from the occasional prisoner). That means I can't leave my desk to run to the bathroom without calling a patrol in off the road. That's not always possible, if they're all tied up on calls. As most people here already know, when the urge hits, there's no stopping it. I end up having to grab a portable radio, a pad and pen and run to the bathroom as quickly as possible. It would be so nice to live a normal, healthy, life. I'm not sure I'd know how to deal with it though. lol

I just hope the results will be in soon. I'm guessing they'll be held up until Tue or Wed because of the holiday weekend. I hate waiting!!! :angry:

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. - Rogol72 replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?

    2. - Scott Adams replied to Butch68's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?

    3. - MogwaiStripe replied to Midwestern's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      15

      Gluten Issues and Vitamin D

    4. - Butch68 posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Guinness, can you drink it?


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,220
    • Most Online (within 30 mins)
      7,748

    Dye42
    Newest Member
    Dye42
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Rogol72
      Hey @Butch68, I also have dermatitis herpetiformis but don't suffer from it anymore. I used to drink Guinness too but I drink Cider now when out on social occasions. I assume you are in Ireland or the UK. If it's any good to you ... 9 White Deer based in Cork brew a range of gluten-free products including a gluten-free Stout. I'm not sure if they are certified though. https://www.9whitedeer.ie/ I haven't come across any certified gluten-free stouts this side of the pond.
    • Scott Adams
      This is a very common question, and the most important thing to know is that no, Guinness is not considered safe for individuals with coeliac disease. While it's fascinating to hear anecdotes from other coeliacs who can drink it without immediate issues, this is a risky exception rather than the rule. The core issue is that Guinness is brewed from barley, which contains gluten, and the standard brewing process does not remove the gluten protein to a level safe for coeliacs (below 20ppm). For someone like you who experiences dermatitis herpetiformis, the reaction is particularly significant. DH is triggered by gluten ingestion, even without immediate gastrointestinal symptoms. So, while you may not feel an instant stomach upset, drinking a gluten-containing beer like Guinness could very well provoke a flare-up of your skin condition days later. It would be a gamble with a potentially uncomfortable and long-lasting consequence. Fortunately, there are excellent, certified gluten-free stouts available now that can provide a safe and satisfying alternative without the risk.
    • MogwaiStripe
      Interestingly, this thought occurred to me last night. I did find that there are studies investigating whether vitamin D deficiency can actually trigger celiac disease.  Source: National Institutes of Health https://pmc.ncbi.nlm.nih.gov/articles/PMC7231074/ 
    • Butch68
      Before being diagnosed coeliac I used to love Guinness. Being made from barley it should be something a coeliac shouldn’t drink. But taking to another coeliac and they can drink it with no ill effects and have heard of others who can drink it too.  is this everyone’s experience?  Can I drink it?  I get dermatitis herpetiformis and don’t get instant reactions to gluten so can’t try it to see for myself. 
    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
×
×
  • 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.