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

karalisa78
Go to solution Solved by Scott Adams,

Recommended Posts

karalisa78 Newbie

Has anyone else had a biopsy come back Marsh 1, and didn't have blood work beforehand? My biopsy indicated possible celiac with a score of Marsh 1. Patchy Mildly Erythematous Moucosa. Other than that, all looked ok in the stomach. I got my results last week and still have not heard from the doctor (even with messaging). The issue is I have been eating a low carb diet for weeks now, and on and off for years because I feel so much better. Now I'm reading I should eat gluten in case I have to do blood test, which I have been doing, but is there a chance I may not need to do this? Wondering what others experienced if their biopsy came back Marsh 1 but through endoscopy looking for reflux?


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



Celiac.com Sponsor (A8-M):



Scott Adams Grand Master

How much daily gluten were you eating before the endoscopy? It sounds like you were not eating enough, which can lead to false-negative results (although it sounds like you may still have a positive result).

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

  • Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
  • Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

 

karalisa78 Newbie

Thank you! I've been reading this, but my endoscopy did come back positive,  Marsh 1. Not sure if I do blood tests next to confirm or if that will be my diagnosis. No started eating gluten again when I got the biopsy result on Wednesday,  but still am not sure what the standard is here and would really like to go back to not eating it. 😫

  • Solution
Scott Adams Grand Master

Hopefully your doctor will clarify everything, but given your positive biopsy and symptoms that seem to be relieved when you go gluten-free, it's likely that you have celiac disease, although the normal protocol for diagnosis typically begins with a blood antibody panel, followed by an endoscopy. Let us know how it turns out!

After you get the ok to go gluten-free:

This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):

 

 

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:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Rejoicephd replied to Rejoicephd's topic in Coping with Celiac Disease
      8

      Draft gluten-free ciders… can they be trusted ?

    2. - Wends replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Inconclusive results

    3. - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Inconclusive results

    4. - Gigi2025 replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      64

      How Come Gluten Didnt Bother Me In Italy

    5. - Wends replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Inconclusive results


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,706
    • Most Online (within 30 mins)
      7,748

    Lyana Chahine
    Newest Member
    Lyana Chahine
    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

    • Wends
      Be interesting to see the effects of dairy reintroduction with gluten. As well as milk protein sensitivity in and of itself the casein part particularly has been shown to mimic gluten in about 50% of celiacs. Keep us posted!
    • deanna1ynne
      She has been dairy free for six years, so she’d already been dairy free for two years at her last testing and was dairy free for the entire gluten challenge this year as well (that had positive results). However, now that we’re doing another biopsy in six weeks, we decided to do everything we can to try to “see” the effects, so we decided this past week to add back in dairy temporarily for breakfast (milk and cereal combo like you said).
    • Gigi2025
      Hi Christiana, Many thanks for your response.  Interestingly, I too cannot eat wheat in France without feeling effects (much less than in the US, but won't indulge nonetheless).  I also understand children are screened for celiac in Italy prior to starting their education. Wise idea as it seems my grandson has the beginning symptoms (several celiacs in his dad's family), but parents continue to think he's just being difficult.  Argh.  There's a test I took that diagnosed gluten sensitivity in 2014 via Entero Labs, and am planning on having done again.  Truth be told, I'm hoping it's the bromine/additives/preservatives as I miss breads and pastas terribly when home here in the states!  Be well and here's to our guts healing ❤️
    • Wends
      Lol that’s so true! Hope you get clarity, it’s tough when there’s doubt. There’s so much known about celiac disease with all the scientific research that’s been done so far yet practically and clinically there’s also so much unknown, still. Out of curiosity what’s her dairy consumption like? Even compared to early years to now? Has that changed? Calcium is dependent in the mechanism of antigen presenting cells in the gut. High calcium foods with gluten grains can initiate inflammation greater.  This is why breakfast cereals and milk combo long term can be a ticking time bomb for genetically susceptible celiacs (not a scientific statement by any means but my current personal opinion based on reasoning at present). Milk and wheat are the top culprits for food sensitivity. Especially in childhood. There are also patient cases of antibodies normalising in celiac children who had milk protein intolerance/ delayed type allergy. Some asymptomatic. There were a couple of cases of suspected celiacs that turned out to have milk protein intolerance that normalised antibodies on a gluten containing diet. Then there were others that only normalised antibodies once gluten and milk was eliminated. Milk kept the antibodies positive. Celiac disease is complicated to say the least.
    • deanna1ynne
      And thank you for your encouragement. I am glad that her body is doing a good job fighting it. I also just want clarity for her moving forwards. She was only 6 for the last round of testing and she's 10 now, so I'm also hoping that makes a difference. It was weird during her last round of testing though, because right before her biopsy, we'd upped her gluten intake by giving her biscuits made from straight up vital wheat gluten, and her labs actually normalized slightly (lower ttg and her ema went negative). Bodies just do weird things sometimes! lol
×
×
  • 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.