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

Frustrated With Dr


MChase

Recommended Posts

MChase Apprentice

I just received my results back from my endoscopy and colonoscopy. Everything was negative. When I asked how many biopsies the Dr took, the receptionist said 7 (but only 1 in the small intestine). He did not do a blood test prior to the procedures. My PCP who referred me specifically said to test for Celiac. My instructions from the GI office is to continue Prilosec (which was giving to me Oct 3) and take Immodium and return in 3 months. I feel like the last 2 months have been wasted and no telling how much $$.

My choices are

1. Go back to my PCP and ask for a celiac panel. Dr visit: $100+ costs of blood tests (my annual blood tests run $125-200, so no telling how much a panel will cost).

2. Follow the GI instructions and be in pain for 3 more months and then pay $150 to see him again.

3. Go to another GI, which who knows how much that will be. Probaly $150-225 for office visit. Plus tests costs. My endoscopy/ colonoscopy was $1000 (hospital fee)+ dr fee+anesthia fee (haven't received bills yet).

4. Go gluten free and see how I feel.

Since the end of August to now, we have/will spend about $2500-3000 for my digestive issues and really didn't testing done that needed to be done. With our high deductible, this is all out of the pocket.

Crohns, Ulcerative Colitis, Cancer, Bacteria, etc has been ruled out. But now I'm wondering if that is bogus too since he ruled out Celiac.

The reasons I wanted a dx was so I know how careful I need to be, whether or not to get my son tested, and to have "proof" that im not crazy..


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



Celiac.com Sponsor (A8-M):



mommy2krj Explorer

If I were you....I would talk to my regular Dr. since he seems to be on board with the Celiac thing. Let him know exactly what you put in your post about the lack of biopsies and that the GI was an idiot. Then ask him for the Celiac panel blood tests. Do the blood work then after giving the blood for said blood work I would go on a gluten free trial. Depending on whether you're willing to spend more money to go see a new GI doc for another round of biopsies. If you are, wait for the biopsies to be done and then do the trial gluten free.

 

How frustrating it is to have doctors that don't know what they're doing when it comes to this. There is actually a topic here in the forums devoted just to that....but I don't remember off the top of my head where it is.

 

Hope you can get some answers. Either from doctors that are doing a decent job or from your own trial and error.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,017
    • Most Online (within 30 mins)
      7,748

    Leelee505
    Newest Member
    Leelee505
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.1k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • BertoleAmur
      I’ve been gluten-free for a while too, and I know how frustrating it can be when your body reacts unexpectedly. I haven’t personally experienced what you’re describing with Ozempic, but I did have a situation where I took a break from certain supplements and noticed my body felt a lot better.
    • Scott Adams
      Two of our moderators @knitty kitty and @Wheatwacked know a lot more about nutrients and may be able to offer some more help, so hopefully they will chime in here.
    • aperlo34
      Hi Scott, thanks for the reply.    I’m currently taking  3000IU vitamin D3 centrum multivitamin  500mg vitamin C 1000mcg B12 naturemade softgel Omega 3 (for dry eyes) My latest labs for vitamins were D - 43.6 (range 30-100) B12 - 406 (range 232-1245) Folate - 11.4 (range >3.0) ferritin - 117 (30-400) magnesium - 2.3 (1.6-2.3) Calcium - 9.9 (8.7-10.2)   I am 29 and really struggling with this emotionally, I was caught by surprise 2.5months ago with this dx and pretty much no symptoms that I really knew of besides low ferritin. When I first met with the GI doctor in July and he ordered the endoscopy/colonoscopy, that was around when the twitching started. I’m unsure if it’s the anxiety of it all (I have been consistently freaking out since the scopes were ordered, losing sleep, obsessively googling etc.) or if it’s celiac related. I’m horrified that I might have something else wrong with me.  Additionally, I’ve been getting some mixed opinions - dietician told me to stop the additional b12 because my multi had b12, but I see online that some people think b12 levels should be well over 500.    Some other things that I’ve experienced since I went gluten free are more “sinus” headaches, facial pressure, some cramping in my left side (could be postural problems I’m dealing with) and dry eyes - my eye doctor has me on some eyes drops that really help and this is a work in progress. And no my mouth isn’t dry too 😅   I’m absolutely beside myself with fear of other AI diseases and have no one I can really turn to (besides online) that has dealt with this. I have no idea what’s in my mind and what is a real symptom anymore because I’m so hyper aware of every sensation in my body! Thank you so much in advance for any input/guidance.    
    • Yaya
      I never had muscle twitching that I would relate to Celiac Disease (celiac disease).  However, I now have Long Covid and muscle twitching, burning, and other issues cropped up with that.  Predating all was restless leg syndrome (RLS).  Are you talking about RLS?  I've had that since '99.  It gets progressively worse.  
    • Scott Adams
      Hello @aperlo34, what types of supplements are you taking? Your symptoms could be related to vitamin/mineral deficiencies.   The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
×
×
  • Create New...