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

Blood tests vs biopsy


Dp0155

Recommended Posts

Dp0155 Rookie

Hi guys, 

I last week received diagnosis of celiac via blood tests and what the dr described as “pretty much 100% certain you are celiac as we don’t usually see numbers like that”. I suffered from severe symptoms nausea , vomiting , stomach pains , bloating. I dropped 6kg in weight rapidly and my state was awful to say the least especially as an advid athlete. 

I was advised by the dr to go gluten free immediately and the difference has been astounding. I can train again with increased strength , I can get outta bed some days I just couldn’t , no more nausea ect. I’m also on vitb12 and iron pills as I was also malabsorpbing. 
 

I was advised follow up appointments would be made and I now have an appointment with my dr to discuss a biopsy. I mean as I understand it’s the gold standard for testing in adults but my dr seems to be convinced I’m celiac, so it did take me by shock when she said once the biopsy date comes through I would need to eat gluten again for 6 weeks. Like what am I meant to do be happy with feeling horrendous again for 6 weeks and get weak ! Seems so counter productive to me. I’m just wondering if anyone else has had Similar issues and if I should contest a biopsy or not ? 
 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

While I think an endoscopy to obtain biopsies can be very valuable (benchmark), getting one now during this pandemic seems risky.  Your blood tests were high and you responded to the diet.  You would have to do a gluten challenge of 2 to 4 weeks (for endoscopy, longer for blood tests) which can be pure misery once you have been gluten free.  If you need a solid diagnosis, consider waiting until this crisis is over.  In the meantime, in six months, repeat the blood tests to see if they are trending downward.  Consider a genetic test too.  Many doctors will give you a formal diagnosis based on all these results.  

  • 1 month later...
Larzipan Rookie

Hi there, I'm not a medical professional but I had a very similar experience. I got a very high result on my blood test and my gastro doctor thought it was pretty definite that I had Celiacs Disease. They wanted me to do a colonoscopy and an endoscopy to 100% confirm it, which I could not afford so I turned it down. I've been eating gluten free since November and all of my symptoms have gone away. I feel very confident that I have Celiacs even though I didn't get a biopsy. I no longer have nausea, chronic diarrhea, migraines, anxiety/depression, and terrible joint pain after quitting gluten. I personally don't think it's necessary to get a biopsy if you can feel your body healing itself while being gluten free. I don't think it's worth the pain of eating gluten again for weeks to get further proof that an ingredient really hurts your insides, but that's just me haha.  

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • 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.