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

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

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

......

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,074
    • Most Online (within 30 mins)
      7,748

    Amy1620
    Newest Member
    Amy1620
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Jmartes71
      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
    • Russ H
      This treatment looks promising. Its aim is to provoke immune tolerance of gluten, possibly curing the disease. It passed the phase 2 trial with flying colours, and I came across a post on Reddit by one of the study volunteers. Apparently, the results were good enough that the company is applying for fast track approval.  Anokion Announces Positive Symptom Data from its Phase 2 Trial Evaluating KAN-101 for the Treatment of Celiac Disease https://www.reddit.com/r/Celiac/comments/1krx2wh/kan_101_trial_put_on_hold/
    • Scott Adams
      BTW, we've done other articles on this topic that I wanted to share here (not to condone smoking!):    
×
×
  • 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.