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

Doctor Referral Wanted


trying4faith

Recommended Posts

trying4faith Apprentice

Hi all,

We live in Cary, NC which is close to Raleigh.

Please, please, please if you know of or are being treated / diagnosed by a doctor who knows about celiac - in particular for patients with inconclusive test results - please reply.

Both my son and I need a qualified doctor. I've seen the referrals to enterolab, but want to work with a doctor to requests the tests and review the results. My tests, so far, have been all over the place. I've had blood work, two GI's, colonoscopy and endoscopy. No diagnosis as of yet, but "indicators", whatever that means.

Thank you.


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



Celiac.com Sponsor (A8-M):



Guest gliX

Dr. Lee of Northern Virginia

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      129,857
    • Most Online (within 30 mins)
      7,748

    RoseGow
    Newest Member
    RoseGow
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • ehb
      Thank you @Scott Adams and @trents this is very helpful, and I think I have some solid ideas to bring to my doctor (corticosteroids, testing for chron’s, increasingly strict gluten-free diet)  @RMJ thank you this is definitely reassuring as well, I’m feeling frustrated and hopeless because I have gone through a similar progression of increasing strictness, and am now at a level similar to what you describe, but have not seen any changes in my blood results. I am now thinking to cut out processed foods altogether maybe with the help of a dietician? I’m also worried about cross contamination from the tables or microwave at my work (there is often free pizza and such sitting). It just feels so restrictive to not see or feel any results 
    • knitty kitty
      Welcome to the Tribe!   Take the Celiac diagnosis and run with it!
    • SMK7
      This was the advice from the GI physician:  "We discussed that your work-up is equivocal for celiac disease due to discordant serologies and biopsy results. As we discussed the gliadin DGP Ab IgA has a lower sensitivity (87%) and specificity (80-95%) for celiac disease compared to tissue transglutaminase Ag IgA (sensitivity of 95%, specificity of >95%, which you tested negative for). Your duodenal biopsies were normal; though in mild cases of celiac disease, affected areas can be patchy. While about 90% of individuals with celiac disease carry the HLA-DQ2 allele, many people in the general population also carry this allele without developing celiac disease.  In the context of some of your symptoms of GI upset, it's possible that you may have either irritable bowel syndrome, gluten intolerance, or a very mild case of celiac disease. As we discussed, sometimes we can attempt a high gluten diet for 6-12 weeks with a repeat EGD and biopsies. Or, you can treat this as if you had celiac disease by being gluten free and see if it helps with some of your other GI symptoms. We decided to take the second approach. In patients with celiac disease, we do monitor vitamin levels every year. We would also get a DXA scan to screen for osteoporosis. I have ordered these studies for this year; subsequent checks can be done via your primary care doctor's office."
    • SMK7
    • RMJ
      Sometimes it can take a long time for antibodies to get into the normal range.  My TTG IgA was normal after a year, but just barely and it bounced in and out of normal range for a few years.  It took five years to get the DGP IgA normal. You may want to reevaluate your gluten free diet.  I started by not eating anything with gluten ingredients. All antibodies decreased but DGP IgA still elevated. Then if I ate processed foods I only ate those labeled gluten free.  Still not enough.  Now I only eat processed foods if certified gluten free or labeled gluten free and from a company with a good reputation in the celiac world.   To answer another one of your questions, the incidence of intestinal lymphoma in general is very, very low.  Yes it is increased in those with celiac disease , but even with the increase incidence is still very, very low.
×
×
  • Create New...