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

Follow Up Appointment


Glutina

Recommended Posts

Glutina Rookie

Hello again everyone! I hope your gluten free lives are going well :)

I just wanted to update on the follow-up appointeny I had with my doc, as it was a bit surprising to me. Quick overview:

So...I was tested by a G.I. specialist in January for Celiac via bloodwork. (He immediately asked if I had ever been tested for it and about my family history and so on...he said I basically had all the symptoms.) I was thrilled that he took the time to think of what might be causing all my "washroom" and fatigue issues, and my general sense of feeling "off", not to mention the excruciatingly painful "attacks" I would get in my gut after eating certain things, more specifically soy sauce and imitation crab meat and bread. (All big gluten nono's!) So, he also set me up to have an ultrasound to rule out anything more severe with any organs or intestinal abnormalities, etc.

In the follow up appointment I had last friday, he confirmed that my celiac blood work was negative, but at the higher end of normal for something (ack---forget exactly what :blink: ) but not high enough to read celiac. He also said it was not the specific celiac-gluten antibody but something else that showed a high reactivity...? Anyhoo---the ultrasound was normal, thank goodness! I also told him that I had tried going gluten free after our first appointment when he mentioned possible celiac because I did not want to deal with my symptoms another day! He asked how it was going and I said GREAT! I asked him about the possiblilty of a false negative and he said that yes, those are quite possible, but here's where he surprised me: he said that since I am feeling better going gluten free, whether or not I have celiac, he owuld give the same advice to follow a gluten free diet. He also said that if I WANT the biopsy, he'll do it, but he left it up to me. Up to me! Wow!!! He also said something else that I had never thought of....that going gluten-free could be helping me to avoid other intolerances which ultimately leads to the same path: a normal, symptom-free life! He also said that going gluten free will complicate any further testing, and so he is also leaving that up to me!!! He said that since gluten free is working for me, I need to stick with it no matter if I have celiac (unlikely), gluten sensitivity or even wheat sensitivity. It is so nice to know that if I have any further concerns or if symptoms start up again that he has told me to come back and get further testing if I feel I need it.

I just thought I would share a positive GI specialist story with you all...and to remember that the diagnosis is ultimately the same for celiac disease or gluten sensitivity. AND, more importantly, that your health is in YOUR hands and not to stop at one doctor's opinion (or lack of one as I have also experienced with other misinformed doctors).

Your friend in this gluten free life,

-Glutina


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

It sounds like you have a great doctor who is more concerned with the health of his patient than a lot of them are. Congrats. I think the home page here has a place for celiac savvy doctors to be listed, you may want to add him to the list.

Glutina Rookie

I agree that I am lucky in finding him as a specialist! I will add him to the list of "good ones" :)

-Glutina

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      Disaccharide deficient, confusing biopsy results, no blood test

    2. - Samanthaeileen1 replied to Samanthaeileen1's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      7

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

    3. - GlorietaKaro replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

    4. - trents replied to GlorietaKaro's topic in Super Sensitive People
      5

      Am I nuts?

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,809
    • Most Online (within 30 mins)
      7,748

    Ello
    Newest Member
    Ello
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
    • Samanthaeileen1
      Okay that is really good to know. So with that being positive and the other being high it makes sense she diagnosed her even without the endoscopy. So glad we caught it early. She had so many symptoms though that to me it was clear something was wrong.   yeah I think we had better test us and the other kids as well. 
    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
    • trents
      @GlorietaKaro, your respiratory reactions to gluten make me wonder if there might also be an allergic (anaphylaxis) component at work here.
×
×
  • 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.