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Frustrated With Dr
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2 posts in this topic

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..

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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.

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    • No I'm in the UK, from what I've been told that's a good thing for gluten labeling and standards compliance. What you and everyone else on here says makes me sense than what the doctors are saying (a confused message at best is what they're giving me, each one with a slightly different version of it). My referral letter is in the post so on theory appointment may not be that far away. I have a load of my favourite Quorn stuff (non-gluten-free version) in the freezer so perhaps using that up may be a good way to proceed for now. I'm out at the moment and torn whether to try chips from a café, in the strict gluten-free future would probably be a no-no but in current situation probably not so bad...
    • I also only really eat one meal a day and always after I get home. I never really feel hungrey. I call it 'Pavlov's dog in reverse'.  I think it comes from so many years of food making me sick. I have gotten to the point where I now at least can eat a sandwhich and some fruit during the day but it wasn't a quick process. When folks get like that it is very important to make sure that one meal has a good amount of both calories and nutrtion.  If your diet is how you describe you are starving yourself.  You need to get yourself used to eating again.  What helped me was carrying a baggie with some nuts and dry fruit with maybe even a handful of gluten free pretzels and always some chocolate baking chips. I just ate couple pieces when I thought of it throughout the day. A little bit of cheese and a couple safe crackers, a piece of fruit or a small tin or individual serving snack pack are also good. You need to get some nutrition during the day so you can feel up to cooking a simple full meal  for dinner. I hope your feeling better soon.
    • Ok, I can't seem to find my first lot of blood tests that were done for Celiac screening, they did include TTG I remember that much, and I am getting another copy of it but another test did come in today.  I don't know how different tests are done around the world and I don't get all the medical jargon but this is what it states, ******************************************************************************* HLA DR/DQ Genotyping for Coeliac Disease, Specimen type : EDTA blood Method : Detection of sequence-specific oligonucleotides (Gen-Probe). HLA-DR - 1, 13          DRB1 - 01, 13 HLA-DQ - 5,6        HLA-DQA1 - 5,6      HLA-DB1 - 05, 06 Interpretation : No genotype susceptibility for coeliac disease.  The DQ2 and DQ8 antigens associated with increased risk of coeliac disease were not identified in this patient.  In the absence of these antigens, coeliac disease is extremely unlikely.   *******************************************************************************   I have read the horror stories of blood tests and scope biopsies not be done right or flawed but here is what I do know as of now, At the moment the most non invasive test I can have done say negative.  I have double scopes (endoscopy and colonoscopy) booked for the 12th of October with results from biopsies expected a week or two after. Chances are they will show, a) signs of coeliac disease (even if the odds are low it can still happen), b) show signs of something else entirely and we will be busy dealing with the ramifications of that or c) it will show no signs of coeliac but I will still be suffering from gluten sensitivity (which is harder/impossible to measure clinically). My GP has told me that stress and anxiety can be a cause of all the symptoms I have been experiencing and suggests if the scopes show nothing that I may benefit from something to treat anxiety, i.e. antidepressants.  Not in a, "Oh we don't know what it is so have these," kind of way, he agrees with the thought that the scopes could indeed show coeliac, something else or even be negative. I did tell him that I could have a sensitivity and that even without benefit of clinical results, some people have gone on a gluten elimination diet for a period of time to see if they get any relief.  My question is this, if the scopes come up negative and I try eliminating gluten, how long would it be before I saw any results or improvements?  I have read enough here and elsewhere to know that everybody is different, some see results within days, some see results longer but are there any guidelines for how long a test like this should be undertaken for?  I have heard everything thing from two weeks to two months.  All of this is entirely moot at this point but I know that even if the results said clear, there would always be a little part of me that wonders if it could be a sensitivity that is the problem.  Any thoughts or advice greatly appreciated, and a thank you to all those who have taken the time to respond and offer advice and encouragement so far.        
    • We don't delete accounts but can delete any personal information and change your screen name if you would like. Just send me a personal message with three possible screen names. For the record you can edit most things in your account area with the exception of your screen name.
    • Thanks I never heard of that dye before, I guess I have to find more natural meat thanks for the suggestion. 
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