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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Would You Report A Doctor Who Misdiagnosed You?
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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

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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?

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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, 

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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

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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."
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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!

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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.  

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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.

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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.

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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!

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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

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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

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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

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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.

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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 ;)

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