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

Refractory Sprue


sillyyak

Recommended Posts

sillyyak Enthusiast

I was diagnosed with sprue last November. Initially, I started to get better but then this past week has been horrible with nauseau, vomiting, diarrhea and sever abdominal pain. How do I know this could be an indictation or refractory sprue or not? I am very upset and worried that I was getting better and now seem to be not getting better. Any advice would be appreciated! Thanks


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



Celiac.com Sponsor (A8-M):



lovegrov Collaborator

Refractory sprue is very, very rare. It's much more likely that you are making mistakes, that you aren't healed yet (you probably aren't; two months isn't much time), or even that you have bacterial overgrowth (try some probiotics).

richard

tarnalberry Community Regular

or a separate infection - viral or bacterial. has the flu been going around your area?

happygirl Collaborator

or is there any chance that you have had minor, minor amounts of gluten (i.e., through cross contamination, etc?) the only time I get symptoms is if I have been 'glutened.'

Hope you feel better!

LLCoolJD Newbie

I'll tell you straight up - don't worry about refractory sprue. You can spend hours and hours online looking up horrible complications of Celiac Disease (refractory sprue, intestinal t-cell lymphoma, etc.), but it will just lead to unnecessary worrying and will be time wasted.

From what you're describing, you have probably caught a nasty virus, or eaten something that doesn't agree with your system. As someone else mentioned, the more dangerous complications like refractory sprue are very rare. Keep yourself well-fed, well-hydrated, and hang in there. It'll get better.

julie5914 Contributor

I worry about it too because my blood numbers will not get down. It is still early for me too though - just 6 months - and I am not very malnourished or too thin. I wasn't sure if you meant Nov of 2004 or 2005. If you meant 2005, it isn't anything to worry about yet. If you are talking about 2004 and this keeps up, it may be worth getting a endoscopy to see what's going on if you are really concerned.

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
      132,218
    • Most Online (within 30 mins)
      7,748

    tiffhorn14
    Newest Member
    tiffhorn14
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • 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.