Jump to content
  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

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:
    Donate

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Russ H replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Coeliac or not coeliac

    2. - Wheatwacked commented on Scott Adams's article in Diagnosis, Testing & Treatment
      5

      New Study Reveals Hidden Gut Damage in Celiac Disease—Even Without Gluten (+Video)

    3. - Wheatwacked replied to Ginger38's topic in Coping with Celiac Disease
      6

      The Struggle Has Overtaken Me

    4. - cristiana replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      12

      Coeliac or not coeliac

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

    • Total Members
      134,198
    • Most Online (within 30 mins)
      10,442

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

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • Russ H
      Do you have the standard range for the test results you received? A level of anti-tTG2 antibodies at least 10x the standard range is almost certainly (>98%) due to coeliac disease. Moderately raised levels can be caused by other conditions as well as coeliac disease. Accuracy of the No-Biopsy Approach for the Diagnosis of Celiac Disease in Adults: A Systematic Review and Meta-Analysis It is possible to have latent or early stage coeliac disease without histological changes visible by microscope. As has been suggest in this thread, if the repeat test comes up negative and serology is high, request an HLA genetic test from your specialist. Only 40 % of the population carries an HLA gene variant enabling the development of coeliac disease - if you test negative for this, it is quite unlikely that you have coeliac disease.  
    • Wheatwacked
      Hi @Ginger38, By now you know that these things improve without gluten. I once saw an interview with a corporation executive where he proudly declared that his wheat products are more addictive than potato chips. Dr Fuhrman (Eat to Live) said find foods that are friendly to you to be friends with.  
    • cristiana
      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
×
×
  • Create New...