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Really Stupid Question (Probably)

kdickinson

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kdickinson Rookie
kdickinson
Posted

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.

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chasbari Apprentice
chasbari
Posted

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
kareng
Posted

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
kdickinson
Posted
  • Author

True.

kdickinson Rookie
kdickinson
Posted
  • Author

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
T.H.
Posted

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.

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      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
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