Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Would You Report A Doctor Who Misdiagnosed You?
0

15 posts in this topic

Hi! I finally have my positive diagnosis of Celiac and while I know it's a tough road ahead, i'm so happy to have it!  I'm ready to start feeling better.

 

The first doctor who tested me for Celiac misread the blood paperwork, told me I did not have Celiac, and ordered more tests for me. She wanted to check my gallbladder next, and even prescribed me drugs for calming my bowels.  I took the celiac results paperwork to another doctor and within minutes was told that it was a very strong possibility I had it. He didn't order the endoscopy because I've been gluten free for about a month now, and feeling better. I also didn't need to have that info for my own piece of mind - the bloodwork was enough for me.

 

I want to report the first doctor who misread the paperwork. I am not a vengeful person - I don't want to get her in trouble, but I don't want others to suffer like I did with the wrong information.

 

Would you consider reporting someone who was so clearly wrong? Anyone have any advice so I can help other people who might be seeing her?

 

Thanks!

 

Ami

0

Share this post


Link to post
Share on other sites


Ads by Google:

Have you looked into who you would "report" her to & how that process works?  Have you gotten copies of all your records from that doc?

 

You might have better luck filing a malpractice suit if you have had side effects of the mis-diagnosis or  prescribed treatment.

 

Perhaps a more helpful thing to do would be to send the doctor some info about Celiac and how your tests were mis-read?  Educate the doctor so it can't happen again?

2

Share this post


Link to post
Share on other sites

If I reported or sued every doctor who misdiagnosed me, I'd be in court for years. Not sure it would hold up in court anyway.

 

A "very strong possibility" means what exactly--what were the results?

This possibility without an endo and positive biopsy and lack of positive celiac-related genes does not necessarily make a definite celiac diagnosis, hon. (I guess that is what you mean by negative DNA in your sig line?)

 

At least, not according to the diagnostic protocol.  

 

Your symptom-resolution so quickly could be NCGS. In any case, I am glad you feel better.

 

You may want to be sure you have celiac disease before you make any reports against this doctor.

 

Welcome to the forum!

 

I took the celiac results paperwork to another doctor and within minutes was told that it was a very strong possibility I had it. He didn't order the endoscopy because I've been gluten free for about a month now, 

0

Share this post


Link to post
Share on other sites

Thanks for the replies. Not looking to sue the doctor or anything, I'd just love to give some cautionary advice to others seeing them. I posted on Yelp, that should be enough. I  might write the doctor a letter as well and be done with it.

 

To answer your question, I tested positive for EMA and had high levels of DGP antibodies. (I think that's the correct terminology), that's what lead to the doctor confirming Celiac.

 

~Ami

0

Share this post


Link to post
Share on other sites

I am confused by something. What do you mean by "negative DNA"?  you have DNA...do you mean negative Celiac gene test? If so, you do not have celiac. That's the exclusionary test. I just heard all this diagnostic protocol this past weekend from Dr. Fasano at a conference here in Orlando.

 

from Univ. of Chicago Celiac Center

"To help diagnose celiac disease, physicians first test blood to measure levels of certain antibodies. These antibodies are:

• The anti-tissue transglutaminase (tTG)
• The anti-endomysium (EMA); and
• The anti-deamidated gliadin peptides (DGP)..
A positive antibody test suggests that a person might be celiac, but it is not a conclusive test; a biopsy will be needed to confirm the diagnosis."
0

Share this post


Link to post
Share on other sites




Sorry, I wrote in such a hurry I didnt realize my grammar was so awful. Of course I have DNA. At least, I sure hope I do!

 

I meant, negative for Celiac DNA. However, I'm wrong. The paperwork says I'm positive for one allele but not another. Paperwork explicitly states "Extremely low likelihood" - but given my positive other tests, the doctor today was pretty assured. High DGP IGG and IGA, plus positive EMA, and high anti human transglutaminase. All this terminology is still new to me!

0

Share this post


Link to post
Share on other sites

If you feel, in good faith, that this doctor is dangerous and should not be practicing medicine or needs remediation, you can report them to your state medical board, and they will investigate and determine if something should be corrected.  I don't think that is the case here.  Either way, given the prevalence of uninformed medical professionals about celiac disease and NCGI, you should always give someone a chance to correct themselves before doing anything else.  I think it would be a good idea to contact them, or if they are not responsive to your requests to talk to someone at the office, send a letter with information from the University of Chicago Celiac center or one of the other prominent Celiac organizations.  Outline what mistake the doctor made and give them the information they need to not do that again in the future.  

0

Share this post


Link to post
Share on other sites

Sorry, I wrote in such a hurry I didnt realize my grammar was so awful. Of course I have DNA. At least, I sure hope I do!

 

I meant, negative for Celiac DNA. However, I'm wrong. The paperwork says I'm positive for one allele but not another. Paperwork explicitly states "Extremely low likelihood" - but given my positive other tests, the doctor today was pretty assured. High DGP IGG and IGA, plus positive EMA, and high anti human transglutaminase. All this terminology is still new to me!

 

 

is this new doctor a GI? Does he want to do a biopsy?

 

what does the genetic test say? positive for which gene?

 

just trying to sort out what your tests say exactly.

0

Share this post


Link to post
Share on other sites

Drs.  are hunan, can make a mistake. 

 

I work in labs, been doing it for 12 years. In spite of what people think, many Drs. are not well versed in interpreting lab reports and that is complicated by the fact that no lab format reports the same, use the same units of measure, and they all use different equipment so ranges vary a lot. 

 

Some labs, like ours, have started to put written explainations of the results in the reports to make it easier for the provider to put them to use. Still, a simple mistake of looking at the wrong colmn or number will still happen, it is human. 

 

People seem to think physicans are never wrong and if they happen to be then they should be strung up for it. IMO, there is a reason why most Drs. do not mind patients getting a second opinion, because they realize they could make a mistake. I think that unless they make a grossly negligant error because they didn't follow accepted practices they should be held accountable. However, for something like this where it sounds like a simple mistake in interpreting a lab result that didn't result in major injury or illness it seems a little spiteful to want to "report" her. 

 

This would go nowhere, there would be no malpractice case that went against her in something like this. Sure, she made a mistake but these sorts of mistakes don't amount to malpractice.

0

Share this post


Link to post
Share on other sites

Since you asked, here are my exact test results:

 

Deamidated Gliadin Peptide Antibody - IgG - 43.0 EU  (<4.9 EU)

Deamidated Giagin Peptide Antibody IgA - 9.3 EU  (<6.1 EU)

Anti-hunman tissue transglutaminase igA - 75.0 EU (<10.3)

Anti-endomysial igA IFA - positive  (range, negative)

total serum iGA by Nephelometry, total igA - 129   (<3 years, 8-220, 3-13 years 41-395, >13, 44-441)

One Allele - HLA DQA1*of DQ2.5 detected, HLA DQB1*02 not detected.

 

In regards to the rest - I completely agree. I don't have a malpractice suit and I wouldn't do that anyways! My only thought was that I could somehow help other people in the same predicament as me but without the thought to keep trying anyways. I like the suggestions of contacting the doctor to have a conversation with her about it and trying to find out why she might have misread it and giving her info so it might not happen again.  Again, I'm not litigious. I was curious if there were any ideas about who might be willing to hear a  "report" but by no means was I looking for backup for a malpractice suit. This hardly qualifies!

0

Share this post


Link to post
Share on other sites

Some doctor somewhere told me... "There is a reason it is called 'practicing medicine'- it is not an exact science."  Just think of what house does in every episode!  I bet a lot of us (myself especially included) are those weird mystery patients with all our many conditions... LOL

0

Share this post


Link to post
Share on other sites

I asked if you had looked into what it took to "report" a doctor because, this isn't really "reportable".  You weren't harmed in any serious way.  Having dealt with how these processes work - hospital and AMA/State Board censoring of Doctors over the years, it doesn't seem bad enough to get into the process.  The process can take a couple of years, etc.  

 

I really think the best thing would be to send a letter with some info from a medical site like Univ of Chicago Celiac Center.

 

 

http://www.cureceliacdisease.org/medical-professionals/guide/diagnosis

0

Share this post


Link to post
Share on other sites

When I met up with a doctor that wouldn't test my daughter's rash, I printed out information about celiac and mailed it with a letter to the doctor.  I all the while remembered a friend that treated her doctor respectively and taught her some lessons. 

 

Dee

0

Share this post


Link to post
Share on other sites

I want to report the first doctor who misread the paperwork. I am not a vengeful person - I don't want to get her in trouble, but I don't want others to suffer like I did with the wrong information.

 

If your main concern is that this doctor may be giving other patients bad information, I would write to her and educate her on her mistake.

I had to do this once when a doctor prescribed me a certain drug (I forget now which one) for a UTI and told me to also start taking larger doses of Vitamin C.  I looked up the drug in the med book and it explicitely states NOT to take it with Vitamin C because it can cause kidney damage!  I copied the page from the manual and sent it to the doctor who appologized profusely.  Doctors are human.  They don't know everything.  Purposefully causing harm is one thing... making an honest mistake is something entirely different.

1

Share this post


Link to post
Share on other sites

Nope.

 

I wrote letters to all of my former doctors...um there were many over the years.  I didn't doctor shop...just turnover of primary docs within UCSD over a thirty year period. 

 

Anyway, my current primary didn't "find" celiac for over three years and many, many tests -- since I tested positive her knowledge of celiac symptoms grew from short skinny children with D to include all possible symptoms -- yes, she now tests all her "fibro" and "rhuemy" patients at my request.

 

I prefer to educate where ever possible and keep my whining amongst my lucky pals on c.com ;)

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,681
    • Total Posts
      921,725
  • Topics

  • Posts

    • 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. 
    • Yes, I only eat one meal a day. Sometimes salad or fries or whatever I can find. And thanks for the replies again.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,681
    • Most Online
      3,093

    Newest Member
    Misalina
    Joined