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False Positive Blood Work?
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I am so conflicted on what to do for my 19 month old daughter.  I am so mad at myself for not being better informed when this all started.  Long story short: my daughter had a diaper rash for 2 months that we could not get to go away no matterwhat we did,  then her poop went crazy, it was wheat grass green, smelled like dead fish and she would poop up to ten times a day.  I had a gut feeling that wheat was causing her symptoms and her doctor said wheat allergy (never in a million years did I suspect celiac) was very common and told us to go gluten free and see how that worked.  It was amzazing how everything cleared up!!!!  A month and a half later they did blood work.  I had to plead for them to even do it   They swore that it didn't matter if she were eating wheat or not.  They were assuming it was the same as allergy testing.  Anyhow, it came back borderline postive by 3 points (I don't even know what that means) but since then they LOST they results and the lab cant find them either.  The specialist won't even talk to us unless we do a month of gluten to retest.   The smallest amount makes her sick  Poops all day the following day and the rash comes back.   she is miserable!  We have also had to go dairy free but haven't done any testing.  She had ear infections for 2 months, lost 10% of her body weight in 2 weeks and ended up in the hospital. 

 

I can't decide if I should retest or not..   Is there something else that would cause a false positve test?  I am trying to find a new doctor but live in a very rural area and chioces are limited and when we did go to the city, the doctor treated me like I was crazy. 

 

Has anyone done genetic testing?   I realize that when she goes to school it will be helpful to have proper diagnosis   I have no doubt she is intolerant to gluten and most likely dairy.    Is it worth making her sick for a month?

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Tests are pretty accurate:

http://www.cureceliacdisease.org/archives/faq/in-blood-tests-are-false-positives-less-common-than-false-negatives

Do you have proof they did the tests? A bill showing they charged you or your insurance company? A copy of the report from the visit when the doc mentions the trst. Not being able to produce a lab report is illegal in under 7 years ( in the case of a child, it usually must be available for several years after they turn 18). Your insurance company may want to go after them for a return of the money they spent, because there is no evidence they did the test they billed for. It's illegal to bill for a test they haven't done. In medical law, if there is no documentation, the test wasn't done.

I'm saying all this because maybe you can use some of this logic to force the lab to reprint the tests. They have it in the computer archive, they just are too lazy to search for it. The doctor's office probably has a copy misfiled, or in a pile they haven't filed.

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Tests are pretty accurate:

http://www.cureceliacdisease.org/archives/faq/in-blood-tests-are-false-positives-less-common-than-false-negatives

Do you have proof they did the tests? A bill showing they charged you or your insurance company? A copy of the report from the visit when the doc mentions the trst. Not being able to produce a lab report is illegal in under 7 years ( in the case of a child, it usually must be available for several years after they turn 18). Your insurance company may want to go after them for a return of the money they spent, because there is no evidence they did the test they billed for. It's illegal to bill for a test they haven't done. In medical law, if there is no documentation, the test wasn't done.

I'm saying all this because maybe you can use some of this logic to force the lab to reprint the tests. They have it in the computer archive, they just are too lazy to search for it. The doctor's office probably has a copy misfiled, or in a pile they haven't filed.

If you have a common last name, that may be the problem.  tell them to search on a DOB....

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I have never heard of a test being falsely positive.  The fact that she was still positive after being gluten free for a while is even more proof that she is reacting to gluten.  Some doctors will diagnose based on reaction to the diet.  Maybe you can get a doctor's note for school based on that alone.  

 

I agree that they need to find the test results.  Keep after them until they produce them.

 

We have a doctor's note but have never been asked to "prove" it to our school or summer camp.  

 

The genetic test may not help you.  We had it done and my son was found to be "not likely" to have celiac.  Since his blood test was positive, they went ahead and did the endoscopy and found "extensive damage."  People without the common genes get it.  People with the common genes don't get it.  There are always exceptions.  If your daughter is one of them, it may cast further doubt on her (obvious) diagnosis.

 

"Borderline positive" is POSITIVE.  Her numbers are low (no surprise, she was gluten free) but it is still positive.  Like a pregnancy test, you can't be "just a little" pregnant.

 

Everyone in the family should be tested - regardless of symptoms - 

 

Cara

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Phone the lab yourself and give them all the pertinent information like the insurance number, date of the test, doctor's name.

If they won't send the results to you, get them to send it to the doctors office.

They use computers, it's got to be there.

 

I read that the tTG test can be false positive but the DGP-IgG is almost nill for false positives.

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I wouldn't retest if you mean putting her on gluten. Not at this age. So much of the brain is forming and do you want to deprive your daughter of a little bit of fat and nutrition for that brain? I have a nearly five-year-old with developmental delays, delayed growth that I believe are strongly linked to my celiac and his gluten issues. I just find the thought of forcing kids this age to eat gluten barbaric. I did it this fall up to his endoscopy (three, four weeks) and I kind of regret it. I just hope that tests improve. Let's hope for that and do what we need to do for our kids now. Keep looking for doctors. Try someone recently graduated from medical school maybe. Could be more informed.

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