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

Doctor Follows Up Weeks Later?


dbuhl79

Recommended Posts

dbuhl79 Contributor

I'm sure many of you have followed my previous posts but I'll recap briefly. After a lot of digestive episodes, I was referred to a GI specialist (who specializes in Celiac Disease, IBS, Crohns). I was tested for Celiac Disease. After calling to receive my results, I was informed that they all came out negative. No exact numbers were given, nothing. And the assistant/nurse informed me that there was no follow up since they hadn't turned up positive.

I was disappointed to say the least that my GI doc had not bothered to have me come back, and review other avenues of diagnosis. Even if it was to generalize me and label me IBS I would of respected, but I didn't even get a follow up appt.

Now the doctors Phys. Asst has called and left a msg on my machine, asking how I am doing. If the Levsin they prescribed is working (which made me feel worse and I stopped taking it). Indicating they may want to see me again if I had issues still. This has been weeks since my appointment. Almost a month.

After getting these test results I've gone gluten-free and know that I feel normal when I am off gluten. When I occassionaly slip up and cheat (yep I'm just weak!!) I will feel the effects of it sometimes in 30 minutes or the next day or so.

I realize this is a personal choice, but I'm curious to get others opinion. Is itworth calling the doctors office back? Should I bother pursuing a follow up appointment? (And no I dont recommend self diagnosis) I'm just not sure its worth my time.

Thanks for any thoughts! :)


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



Celiac.com Sponsor (A8-M):



Tasha2004 Contributor

I went through this yesterday with the rheumatologist. Test results normal, therefore nothing else to do and no reason for me to come back.

I say, get your test results out of them, and then tell them what you are doing and how you are feeling better.

I intend to do this with this guy, if I can get some kind of different help somewhere else.

There is probably no point setting your foot back in their door, because they essentially dismissed you anyway.

plantime Contributor

Why go back to them? They obviously don't think they can help you, or they would have tried. The gastro that did my endo gave me a positive diagnosis in Sept, and I have yet to hear from him about it. No follow-ups, nothing. Just "you have celiac, don't eat wheat, barley, rye, or oats." It wasn't even him that I heard it from, it was from the surgeon that removed my gall bladder! So, why give your moeny to a doc that doesn't want it?

tarnalberry Community Regular

If the doctor is otherwise good, then I wouldn't necessarily decide to leave just yet, though it's always an option. I would go back (or call) and let him know the progress, since they asked. They may well not have called sooner because getting data that covered less than a month on the med you took may not mean anything to them. Doctors don't always call to follow up on every single thing, so I'd be willing to cut him some slack, but also proceed with caution. It's a tough call between a doctor being proactive and a patient being proactive. In the end, though, if you need more follow through, and less reliance on the patient to call back if he/she wants to pursue things further, then it sounds like this isn't the style of doctor for you.

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. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      30

      My journey is it gluten or fiber?

    2. - trents replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

    3. - jenniber replied to jenniber's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      Disaccharide deficient, confusing biopsy results, no blood test

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

      Thoughts? Non-endoscopic Celiac diagnosis in two year old

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

    • Total Members
      132,819
    • Most Online (within 30 mins)
      7,748

    Charlette Jillie-Martinez
    Newest Member
    Charlette Jillie-Martinez
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • 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. 
×
×
  • 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.