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

Initial Appointment With Gi Specialist Dr Tomorrow

Meg123

Recommended Posts

Meg123 Explorer
Meg123
Posted

Hello Again

I've been spending a lot of time in here over the past couple of months, I've become a bit fixated trying to work out whether or not to expect to see a positive biopsy or not. Too much googling, read too many study's etc on the chance of false positive ttg in the bloods vs the negative gene test. I'm reading a lot of varying results. Sending myself crazy.

I phoned the lab to see if I could get any info on which genes I actually did have, (since the report only said that I didn't have DQ2 or DQ8) ie after reading in here I see lots of members have DQ1. But they wouldn't give me any info :( , telling me I had to go through a Dr. <_<:rolleyes:

Anyway, I have stayed on the gluten even though I crumbled after three weeks, but just not hammered myself as much. I have my first initial appointment tomorrow with the specialist GI Dr. I'm in the process of writing down my symptoms so I don't forget. I was just wondering if anyone has any advice for me. I seem to have an awful tendancy to rub Doctors up the wrong way somehow :unsure: this is all costing more than we can afford and I just don't want to stuff it up, and have him refuse to biopsy me. We're not in a position to go and get 2nd or 3rd opinions.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

I hope the doctor is helpful for you. If he does agree to biopsy do keep in mind that can be a false negative so do a gluten free trial after the test. You don't need to wait on the results.

If you were gluten free for a bit and it helped make sure to stress that. If you are doing a challenge and you have kept a symptom journal do bring that with you.

One thing that I should have stressed more with my GI was that I was being woken out of a sound sleep every night with D. I mentioned it but apparently he wasn't listening as after I was finally diagnosed and I mentioned how I was now able to sleep through the night he said 'I wish I had know that as waking up at night with D is not an IBS symptom' I told him I had mentioned it more than once and though he did apologize it certainly didn't make me feel less angry with him.

Meg123 Explorer
Meg123
Posted
  • Author

......

One thing that I should have stressed more with my GI was that I was being woken out of a sound sleep every night with D. I mentioned it but apparently he wasn't listening as after I was finally diagnosed and I mentioned how I was now able to sleep through the night he said 'I wish I had know that as waking up at night with D is not an IBS symptom' I told him I had mentioned it more than once and though he did apologize it certainly didn't make me feel less angry with him.

:angry: thats so frusterating. It's annoying enough when DH does that <_< , but when you are paying someone a LOT of money to care and listen to what you say regarding your health, which was why you were there, :angry::angry::angry:

Archived

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

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

  • Member Statistics

    • Total Members
      133,197
    • Most Online (within 30 mins)
      7,748
    Liburna
    Newest Member
    Liburna
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
    • Scott Adams
      nothing has changed

      By Scott Adams · Posted

      Seven months can still be early in celiac healing, especially if you were mostly asymptomatic to begin with—symptoms like low iron, vitamin D deficiency, nail changes, and hair issues often take much longer to improve because the gut needs time to recover before absorption normalizes. A tTG-IgA of 69 is not “low” in terms of immune activity, and it can take 12–24 months (sometimes longer) for antibodies and the intestinal lining to fully heal, particularly in teens and young adults. Eating gluten again to “test” things isn’t recommended and won’t give you clear answers—it’s far more likely to cause harm than clarity. Weight not changing is also very common in celiac and doesn’t rule anything out. Please know that your frustration and sadness matter; this adjustment is hard, and feeling stuck can really affect mental health. You deserve support, and if you can, reaching out to a GI dietitian or mental health professional familiar with chronic illness could really help you through this phase. This study indicates that a majority of celiacs don't recover until 5 years after diagnosis and starting a gluten-free diet: Mucosal recovery and mortality in adults with celiac disease after treatment with a gluten-free diet However, it's also possible that what the study really shows is the difficulty in maintaining a 100% gluten-free diet. I suspect that if you looked closely at the diets of those who did not recover within 2 years might be that their diets were not 100% gluten-free. Perhaps they ate out more often, or didn't understand all of the hidden ingredients where gluten can hide. Either way, it shows how difficult recovery from celiac disease can be for most people. According to this study: This article explores other causes of flattened villi:    
×
×
  • 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.