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

Jewels50

Recommended Posts

Jewels50 Apprentice

I live in the Eastern NC area and am struggling to find a good Dr, gastroenterologist here in the area.  

I was was told yesterday by the FNP at my gastroenterologist’s office that it is “not true” that other autoimmune diseases can be present with Celiac.  When I showed here the FAQ from the U of Chicago Celiac Disease Center, she replied, “well, they could be.”  

When I showed her the full Celiac panel I had done and paid for myself, she wanted to know why I did that.  I again mentioned that the DGP IgG is the best indicator of Gluten in the diet (mine is negative).  She again told me that wasn’t true and it is the TTG that show if Gluten is in the diet.  (She only ran a TTG test back in July and it was a 5 so her assistant lectured me on “cheating” on the diet.  Yes, I went to the nutritionist/dietician.  I know what I am doing with my diet.)  Again, this is contrary to the FAQ and answers on the U of Chicago CDC’s website and Mayo Clinic about TTg.

I asked her about Ttg2 and TTg 6.  She snorted.  She was adamant that I have no idea of what I am talking about.

She told me to stop “chasing it” and that she’d move my endoscopy up to this month.  (Which she did.)

I told her that was great, but that I cannot go another 3 months battling the chronic fatigue, joint pain, brain fog and basically feeling like crap.  She kinda listened but my 10 minutes were up and off she went.  (I do have an appointment with an Endocrinologist sent up because I do have TPO antibodies in my blood work.)

She works with a gastroenterologist that others with Colitis and Chron’s praise, but I don’t think he is very good with Celiac.  I am definitely thinking the FNP doesn’t do any continuing ed about Celiac.

Anyone know of a good Gastroenterologist in the Eastern NC area?


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master

I do not but I am going to tell you your not alone in to running into ignorant "Know it all" doctors......I know I went through over 6 of them....forgot the exact number....before I found one that even considered celiac. Honestly I think it comes down to there is no money in helping people with it....no medications help and it is completely self regulated via diet. I wish you luck in finding one perhaps someone can help you.

Jewels50 Apprentice
1 hour ago, Ennis_TX said:

Honestly I think it comes down to there is no money in helping people with it....no medications help and it is completely self regulated via diet.

I think you hit it right on the head.  The only way to get production ($$$$$) out of Celiac patients is to do endoscopic surgeries.  And I know the big medical conglomerate that actually owns the gastroenterology practice has production goals that the doctors and staff have to meet.  Hence the reason to have a FNP on staff and meeting with patients.

HMO and PPO insurance has really hurt the medical profession.  But that is another topic.

TexasJen Collaborator

Remember that this nurse practitioner is not the gastroenterologist. They are not the same people. Just because they represent the same office does not mean they have the same knowledge base.  The gastroenterologist went to school for 11 years while the NP only 2.  That's not to say that there aren't great NPs out there, but they provide a different skill and knowledge base. Your GI may very well be a great doc and know the answers that you seek.  Make an appointment with him/her and insist that you see him every time since you don't feel comfortable with the NP. If you still don't find him to be helpful, go to a different office.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,213
    • Most Online (within 30 mins)
      7,748

    MogwaiStripe
    Newest Member
    MogwaiStripe
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • trents
      NCGS does not cause damage to the small bowel villi so, if indeed you were not skimping on gluten when you had the antibody blood testing done, it is likely you have celiac disease.
    • Scott Adams
      I will assume you did the gluten challenge properly and were eating a lot of gluten daily for 6-8 weeks before your test, but if not, that could be the issue. You can still have celiac disease with negative blood test results, although it's not as common:  Clinical and genetic profile of patients with seronegative coeliac disease: the natural history and response to gluten-free diet: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5606118/  Seronegative Celiac Disease - A Challenging Case: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9441776/  Enteropathies with villous atrophy but negative coeliac serology in adults: current issues: https://pubmed.ncbi.nlm.nih.gov/34764141/  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
    • Xravith
      I'm very confused... My blood test came out negative, I checked all antibodies. I suppose my Total IgA levels are normal (132 mg/dl), so the test should be reliable. Still, I'm not relieved as I can't tolerate even a single biscuit. I need to talk to my doctor about whether a duodenal biopsy is necessary. But it is really possible to have intestinal damage despite having a seronegative results? I have really strong symptoms, and I don't want to keep skipping university lectures or being bedridden at home.
    • Scott Adams
      They may want to also eliminate other possible causes for your symptoms/issues and are doing additional tests.  Here is info about blood tests for celiac disease--if positive an endoscopy where biopsies of your intestinal villi are taken to confirm is the typical follow up.    
    • Scott Adams
      In the Europe the new protocol for making a celiac disease diagnosis in children is if their tTg-IgA (tissue transglutaminase IgA) levels are 10 times or above the positive level for celiac disease--and you are above that level. According to the latest research, if the blood test results are at certain high levels that range between 5-10 times the reference range for a positive celiac disease diagnosis, it may not be necessary to confirm the results using an endoscopy/biopsy: Blood Test Alone Can Diagnose Celiac Disease in Most Children and Adults TGA-IgA at or Above Five Times Normal Limit in Kids Indicates Celiac Disease in Nearly All Cases No More Biopsies to Diagnose Celiac Disease in Children! May I ask why you've had so many past tTg-IgA tests done, and many of them seem to have been done 3 times during short time intervals?    
×
×
  • 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.