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 Our Content
    eNewsletter
    Donate

What’s next after Gastroscopy?


Mica29

Recommended Posts

Mica29 Newbie

Hi, I was sent for Gastroscopy after 2 blood tests showing an indicator for Coeliac. 
However the results of the biopsy/ Gastroscopy came back as negative. Is it likely that this might be wrong? What normally happens next? 

 


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

Welcome to the forum. Feel free to share that blood test results with us, and if you do so please also share the reference ranges.

Even just one positive celiac disease blood test result can indicate that you have celiac disease. The biopsy is considered the gold standard to confirm a diagnosis, however if you had two blood test results that were positive it is still likely that you have celiac disease and need to go on a gluten-free diet. At the very least I would say that you may have non-Celiac gluten sensitivity which also requires a gluten-free diet.

trents Grand Master

This happens sometimes. Other forum participants have reported this testing anomaly. Sometimes the damage to the villi in the duodenum is patchy and the biopsies miss the affected areas. This can happen with an inexperienced scoper. Other times the damage is not detectable yet because the disease is caught in very early stages.

Can you share what the specific blood tests that were done, their values and what reference ranges were used by the lab?

Mica29 Newbie
3 minutes ago, Scott Adams said:

Welcome to the forum. Feel free to share that blood test results with us, and if you do so please also share the reference ranges.

Even just one positive celiac disease blood test result can indicate that you have celiac disease. The biopsy is considered the gold standard to confirm a diagnosis, however if you had two blood test results that were positive it is still likely that you have celiac disease and need to go on a gluten-free diet. At the very least I would say that you may have non-Celiac gluten sensitivity which also requires a gluten-free diet.

Thanks, I haven’t got the blood test results but will ask for them and post. It’s really helpful to be able to discuss this with people who have experience with coeliac and am grateful to have found you!

7 minutes ago, trents said:

This happens sometimes. Other forum participants have reported this testing anomaly. Sometimes the damage to the villi in the duodenum is patchy and the biopsies miss the affected areas. This can happen with an inexperienced scoper. Other times the damage is not detectable yet because the disease is caught in very early stages.

Can you share what the specific blood tests that were done, their values and what reference ranges were used by the lab?

Thanks so much, will post if I can get hold of the test results!

frieze Community Regular
3 hours ago, Mica29 said:

Hi, I was sent for Gastroscopy after 2 blood tests showing an indicator for Coeliac. 
However the results of the biopsy/ Gastroscopy came back as negative. Is it likely that this might be wrong? What normally happens next? 

 

A gastroscopy is not the proper test for celiac, hopefully they did an endoscopy, with biopsies 

trents Grand Master

Good catch, frieze. Mica29, can you clarify for us if a gastroscopy (scoping of the stomach) or an endoscopy (scoping of the small bowel which is the part of the digestive track affected by celiac disease)? Both procedures are done from the mouth end but the gastroscopy stops at the stomach.

Mica29 Newbie
8 hours ago, trents said:

Good catch, frieze. Mica29, can you clarify for us if a gastroscopy (scoping of the stomach) or an endoscopy (scoping of the small bowel which is the part of the digestive track affected by celiac disease)? Both procedures are done from the mouth end but the gastroscopy stops at the stomach.

It was described as a Gastroscopy but they took biopsies from small bowel. So technically I suppose it was an endoscopy..


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



Celiac.com Sponsor (A8-M):



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

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,346
    • Most Online (within 30 mins)
      7,748

    CourtneyDave
    Newest Member
    CourtneyDave
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      My reaction to a gluten bolus exposure is similar to yours, with 2-3 hours of severe abdominal cramps and intractable emesis followed by several hours of diarrhea. I don't necessarily equate that one large exposure to gluten with significant intestinal lining damage, however. I think it's just a violent reaction to a what the body perceives to be a somewhat toxic substance that I am no longer tolerant of because I have quit exposing myself to it regularly. It's just the body purging itself of it rather than an expression of significant damage. Before diagnosis, when I was consuming gluten daily, I had little to no GI distress. I was, for the most part, a "silent celiac". The damage to my small bowel lining didn't happen all at once but was slow and insidious, accumulating over a period of years. The last time I got a big shot of gluten was about three years ago when I got my wife's wheat biscuits mixed up with my gluten-free ones. There was this acute reaction after about two hours of ingestion as I described above. I felt washed out for a few days and fully recovered within a week or so.  Now, I'm a 74-year-old male. So, I'm not worried about being pregnant. And I don't want to contradict your physicians advice. But I just don't think you have done significant damage to your small bowel lining by one episode of significant gluten ingestion. I just don't think it works that way.
    • Skydawg
      Wondering about some thoughts on how long to wait to try to get pregnant after a gluten exposure?  I have been diagnosed for 10 years and have followed the diet strictly. I have been cross contaminated before, but have never had a full on gluten exposure. I went to a restaurant recently, and the waiter messed up and gave me regular bread and told me it was gluten free. 2 hours later I was throwing up for the whole evening. I have never had that kind of reaction before as I have never had such a big exposure. My husband and I were planning to start trying to get pregnant this month. My dr did blood work to check for electrolytes and white blood cells, but did not do a full nutritional panel. Most of my GI symptoms have resolved in the past 2 weeks, but I am definitely still dealing with brain fog, fatigue and headaches. My dr has recommended I wait 3 months before I start to try to get pregnant.   I have read else where about how long it can take for the intestine to fully heal, and the impacts gluten exposure can have on pregnancy. I guess I am really wondering if anyone has had a similar experience? How long does it take to heal after 1 exposure like that, after following the diet so well for 10 years? Is 3 months an okay amount of time to wait? Is there anything I can do in the meantime to reduce my symptoms? 
    • ShadowLoom
      I’ve used tinctures and made my own edibles with gluten-free ingredients to stay safe. Dispensary staff don’t always know about gluten, so I double-check labels or just make my own.
    • Scott Adams
      It's great to hear that there are some good doctors out there, and this is an example of why having a formal diagnosis can definitely be helpful.
    • RMJ
      Update: I have a wonderful new gastroenterologist. She wants to be sure there’s nothing more serious, like refractory celiac, going on. She ordered various tests including some micronutrient tests that no one has ever ordered before.  I’m deficient in folate and zinc and starting supplements for both. I’m so glad I decided to go to a new GI!
×
×
  • Create New...