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

Really Stupid Question (Probably)


kdickinson

Recommended Posts

kdickinson Rookie

So I went to a general surgeon today to get an appointment set up for a colonoscopy that I'm due for, and I decided to ask him if he could do celiac testing. And he told me he could, but that he would do the biopsy first, and then if that was positive, do the blood test. Now maybe I've just been dislexic around these forums, but typically a doc would give cheap blood test first, and then do endoscopy if blood test was positive right? He told me it would actually cost more for a blood test than the biopsy would cost! Please give me some advice.


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



Celiac.com Sponsor (A8-M):



chasbari Apprentice

Since you are already scheduled for the biopsy he probably just figured that he might as well check while he has you out. Really, if it's positive I am not sure of the necessity of the blood test other than for a baseline for comparison later on for compliance if you end up with celiac disease DX. Ye, it does appear to be reversed but I think it is because you are scheduled for the procedure already.

kareng Grand Master

I think, since he is already there, the endo won't cost so much. You are already paying for everything for the colonoscopy. I would make sure he takes 6-8 biopsies or it will be a waste.

You may still want to get the blood work. The small intestine is very long (16-20ft). It is possible for 30% of it to be damaged and causing you trouble. Biopsies could miss the damaged spots.

kdickinson Rookie

True.

kdickinson Rookie

So here's an update. I've can get an appointment set up with an actual GI in the city(about hour and half away), but it would be on the same day I could get my endoscopy/colonoscopy done. Something just doest sit well with me going to a general surgeon. I've always liked going to specialists/people who actually study on what is being the problem. And the surgeon just seemed apprehensive and "snooty," and seemed to assume that I'm just a worry-wart looking for another dx. But at the same time I wanna get this over with. I'm so torn. And he's not offering a discount for doing both at same time.

T.H. Community Regular

I've always liked going to specialists/people who actually study on what is being the problem. And the surgeon just seemed apprehensive and "snooty," and seemed to assume that I'm just a worry-wart looking for another dx.

I would go with your gut on this one, no pun intended. :) So far, all the doctors I've come across who think I'm a 'worry-wart' seem to think it because I don't want to follow all of THEIR advice without thinking for myself, you know? That's ego talking, not concern for their patient, and that's usually not a good sign. And for all of them, I found another doc, and lo and behold: I was right, and they were wrong. ;)

Really, though, there were problems that the doctors I got 'bad vibes' from had missed, because they didn't want to listen to me or my concerns and investigate further. And the new doctors listened, and checked, and found out what the real problem was. I have learned now that if I don't feel comfortable with the doctor, that's probably not a good sign.

And here's a couple bits of information to add to the pot: a recent survey study was done, world-wide, with GI docs - the experts who are supposed to know about this disease, yes? And even in THIS field, there is a heck of a lot of ignorance about the disease unless they are a GI doc AND they are a celiac expert. Over half the GI docs were incorrect on simple things like even what tests would diagnose this disease in certain situations.

If the specialty itself has so many people who don't have a clue about this disease, what are the odds that a person not even in this specialty can flub it? Just as a couple questions you can ask him - IS he doing an endoscopy? Did he say that specifically? We've all assumed he is, but I've met a gal whose doctor did a colonoscopy biopsy because he thought that would diagnose celiac disease. :blink: And how many biopsies was he thinking of taking? There should be...I believe it's 5 or 6, last I heard. You might want to check on that. Because there can often be patchy damage, just one biopsy is likely to miss villous atrophy, so a good doctor will take 3 at a minimum, and more is better.

...and actually, researchers did a really interesting study, oh, years back. They asked doctors which patients had the best outcomes with their diseases and problems, and not surprisingly, the doctors all said that the patients who followed their advice and did the treatments they were supposed to were the ones that fared best.

Then the researchers looked at the patients. And the docs were completely wrong. The patients that did the best were the ones that questioned, and argued, and got second opinions, and tried different treatments, and didn't do something until they, too, agreed it was the right thing to do.

Money issues or not - I'd go with the specialist, especially when you are not feeling comfortable with the current doctor.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,895
    • Most Online (within 30 mins)
      7,748

    MLB1970
    Newest Member
    MLB1970
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
×
×
  • 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.