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

Pre-Diagnostic Testing

linda.ghiloni

Recommended Posts

linda.ghiloni Newbie
linda.ghiloni
Posted

Hi,

I'm new to this forum and would appreciate a little guidance. Thanks in advance. After 60 years in this body, something is starting to make some sense. I have finally found a doctor who is willing to seek an answer with whatever means available, however, I didn't fit the celiac disease profile...I'm obese! Now to my problem. I have been gluten-free for 3 months now, but I am concerned as to whether I should be on or off gluten before the test is done. I was told to remain on the gluten-free diet? but, if I am gluten free, how will that affect the test? I have asked at the lab as well as at the doctor;s office. Help!

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

You MUST be eating gluten for all celiac testing. Three months gluten-free is long enough to have a completely negative celiac panel. You need to go back to eating a full gluten diet for at least two months to have a chance of positive test results. I hope it works out for you!

love2travel Mentor
love2travel
Posted

I was told I must ingest at least the equivalent of four pieces of bread per day for three months prior to my gastroscopy and colonoscopy (went with the colonoscopy to rule out other things at the same time). Since I did/do not have GI symptoms I actually quite enjoyed eating gluten again. I made myself an exhaustive list of things to eat for my last hurrah!

The vast amount of false information out there is staggering - even (especially?) from the medical community! As far as fitting the celiac profile I did/do not fit, either. My doctor was as shocked as I was to find I had celiac (my bloodwork was overwhelmingly positive and my sister has gluten intolerance).

Welcome here! :)

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,203
    • Most Online (within 30 mins)
      7,748
    Barbara 1981
    Newest Member
    Barbara 1981
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Liquid lunch
      Medicinal mushrooms 🍄

      By Liquid lunch · Posted

      I can’t say this will work for everyone but for me the difference is incredible so might be worth trying. I’ve never been diagnosed celiac but via an elimination diet I realised I can’t eat any lectins, gluten soy and oats are particularly problematic. If I eat them I’m in bed for a week, then heavy bleeding and extreme pain for another, followed by a third week of bleeding on and off. My skin was a mess and it snowed when I brushed my hair. Since taking reishi and cordyceps mushroom tincture I can’t believe the difference, I’ve had a lot of help from this site so I want to return the favour. I took the tincture for my guts but the most apparent effect is that I feel like my brain works again, I can’t begin to describe how wonderful it is to be able to achieve basic things, I’ve barely been able to organise getting out of bed for so long, it feels like I haven’t been hit over the head with a mallet for the first time in years. Then I glutened myself, not necessarily gluten as so many things wipe me out but definitely ate something I shouldn’t have, I took a treble dose of the tincture and almost immediately felt much better so continued with the increased dose and three days (not weeks) later was back to feeling great, no bleeding involved. My skin is better than I can remember it ever being, I feel great 😊. I spend £1.50 a day on these but it’s worth every penny, I hope this helps someone else out there reading this. I wish I’d known about them 20 years ago. best wishes everyone 🍄 
    • Scott Adams
      Endoscopy

      By Scott Adams · Posted

      Given your history of a high TTG (167) that decreased to 16 on a gluten-free diet, along with genetic confirmation of celiac disease, it’s likely the negative biopsy is a false negative due to not eating gluten before the endoscopy. Gluten is necessary to trigger the intestinal damage seen in celiac disease, and avoiding it can lead to healing and a normal biopsy despite ongoing immune activity (reflected in your still-elevated TTG). The inflammation observed during the endoscopy (“diffuse moderately erythematous mucosa”) could be residual damage, mild ongoing inflammation, or another condition like peptic duodenitis, but it’s consistent with celiac disease in context. Continued positive blood markers suggest ongoing gluten exposure, possibly from cross-contamination or hidden sources. Strict adherence to a gluten-free diet and follow-up testing are key to managing symptoms and reducing inflammation. Discuss these findings with your doctor to confirm the diagnosis and refine your dietary approach. 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.):    
    • Scott Adams
      Biopsy results after 1,5 gfd

      By Scott Adams · Posted

      Yes, it sounds like great progress, but what was the time frame between the two endoscopies? 
    • Scott Adams
      Help with results

      By Scott Adams · Posted

      Your symptoms—headaches, dizziness, nausea, irregular bowel movements, anemia, and menstrual changes—along with a family history of celiac disease, strongly suggest celiac disease could be the cause. The mild duodenal changes seen in your biopsy are consistent with early or mild celiac disease, though they could also be due to other factors. The improvement in bowel movements after cutting out gluten is a positive sign, but other symptoms like headaches and dizziness may take longer to resolve as your body heals. It’s important to continue a strict gluten-free diet and discuss further testing, such as celiac antibody blood tests or a follow-up biopsy, with your doctor to confirm the diagnosis. Many people experience a gradual improvement in symptoms over weeks to months, so patience and strict adherence to the diet are key. You’re not alone in this process, and support from celiac communities can be very helpful. 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.):    
    • Scott Adams
      For people with celiac disease and corn intolerance from it: Is salt still okay for most people?

      By Scott Adams · Posted

      For people with celiac disease and corn intolerance, most salts, including table salt with dextrose, are generally safe in small amounts, as the dextrose is typically highly processed and unlikely to contain problematic corn proteins. However, if you’re highly sensitive, you might consider switching to pure kosher or Himalayan salt, which don’t contain additives. While bringing your own salt to restaurants or avoiding seasoned foods can feel overwhelming, it’s a practical step if you’re concerned. Many people with corn intolerance tolerate trace amounts of dextrose in salt without issues, but individual sensitivity varies. If your current salt isn’t causing symptoms, it’s likely fine to continue using it, especially given your financial constraints and the challenges of managing dietary restrictions. Focus on what works for you and prioritize avoiding larger sources of corn, like cornstarch.
×
×
  • Create New...