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:
    Help Celiac.com:
    eNewsletter
    Donate

Potential Celiac Diagnosis?


jen4az

Recommended Posts

squirmingitch Veteran
6 hours ago, jen4az said:

Thank you for the resources.  I am SO frustrated.  We are in the military and my husband's doctor sent over a referral request to the base GI.  The Dr. declined the referral to see the GI.  He said that a weak positive TTG-IGG does not warrant a GI referral or Endoscopy.  My husband told his doctor that he has diarrhea at least once a day, a family history of celiac and he tested positive for TTG (IGG.)  My husband wants to try and convince the GI to give him a referral.  Does anyone have any GI guidelines or resources that prove this GI doctor wrong?  I've heard on this forum that people can have negative bloodwork and still have celiac disease.  Any journals or research we can bring up when he talks to his doctor?   Thanks again!  I would probably be going completely crazy without you all.  This diagnosis process is extremely frustrating!

Open Original Shared Link

Was your hubs tested for total IgA to see if he's IgA deficient?

Read this thread:

Open Original Shared Link

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



jen4az Rookie

He was not IGA deficient.  I'm still hoping we can convince the base GI to approve his referral.  

Thanks for that thread about TTG Igg.  That's exactly what I was wondering. 

Link to comment
Share on other sites
squirmingitch Veteran

You're welcome! Good luck! And if you get nowhere there, remember, the higher you go, the nicer they get. Skip straight up to the top brass.

Link to comment
Share on other sites
  • 2 months later...
jen4az Rookie

Hello all,  

I can't believe I have been posting about our diagnosis process since July.  It's surreal how long it is taking.  A little update and some questions.  Here are the results of the endoscopies.  

3 year old endoscopy:  pathology report confirmed celiac and gastritis- they did not provide a marsh grade… is that something I NEED to have?  I don't know the purpose of the grading system.

5 year old endoscopy: I already posted that the doc saw erosions/red duodenum and that the pathology report came back negative.  We are going right before Christmas to another city to get a 2nd opinion on her diagnosis.  She is already gluten-free.  I've noticed that her eczema has gotten much worse since going gluten-free.  Is that a coincidence?  Not sure if it has anything to do with going gluten-free or if it is the prednizone they are having us use.  Let me know if you have had a similar experience.

9 year old twin endoscopy:  Negative, doctor saw mild gastritis - she was the one that only was positive with her IGA.  Thinking about making her gluten-free, not sure if there are any signs it is celiac though.

Other 9 year old twin endoscopy:  Negative- This was the one that tested positive on EMA and TTG (IGG) as well as some of the other ones.  I was surprised the biopsy was negative.  She has a lot of symptoms and I feel like the damage must be in the works, but not bad enough for a positive biopsy yet.  I'm treating her as someone with celiac...

My husband's GI finally agreed to do the biopsy.  He was only positive on TTG (IGG.)  Biopsy was negative, but the doc saw some inflammation.  

We are going to redo everyone's bloodwork in 6 months.  If the antibodies go down, that's enough evidence for me to call it celiac.  Thanks everyone!

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      120,160
    • Most Online (within 30 mins)
      7,748

    sandy32
    Newest Member
    sandy32
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.2k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • CatherineWang
      I'm pretty sure that in stores, you can find plenty of gluten-free options. But they are usually a bit more expensive.
    • cristiana
      Hello @BunnyBrown and welcome to the forum. I cannot say that I have had the procedure you describe, but recently I did have general surgery and was routinely intubated.  That pain was what troubled me most after the operation, far more than the operation site.  It took a few days to really settle down, I was quite badly bruised. It was taking so long I was a bit concerned so asked the question on another forum. A few patients came back to me and said they had suffered the same.  I imagine in my own case possibly the throat got bashed about a bit,  maybe they had difficult inserting the tube?  I've suffered with a painful throat post-endoscopy too, but never as long as the intubation pain.   I hope you will be feeling better very soon.   PS BTW - love the name!  I saw this today in an Easter display in a shop and your name reminded me of it.🙂  
    • cristiana
      This wonderful, Anne. I think you have a point about why people disappear off forums.  I found the first few years post diagnosis a real struggle and frankly wondered if I would ever feel better (not to dishearten people, but just to say it can take a while longer for some folk to heal).  However, once my antibodies were back within normal range it really has made a big difference to my health.  I've chosen to stick around because I'm a Mod, otherwise I might have been one of those that disappeared, too!      
    • Exchange Students
      Yes absolutely, we work with all public schools and some private schools in all 50 states.
    • Scott Adams
      Just a quick question, can the host live in any state in the USA?
×
×
  • Create New...