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testing was negative. can this change?

kim5798
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kim5798 Newbie
kim5798
Posted

Asking this question for a friend.  Her child has type 1 diabetes, diagnosed 2 years ago. At that time, they did the celiac blood tests & they were negative. Her son has various stomach issues & she is wondering if they could be celiac related. The nurse at the endocrinologist told her, "the tests were negative 2 years ago, he doesn't need to be tested ever again." My own child has type 1 diabetes and celiac disease & this did not seem correct to me. Can't the celiac disease develop over time??  

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cyclinglady Grand Master
cyclinglady
Posted

Celiac disease can develop at anytime.  TD1 patients have a 10% chance of developing celiac disease.  This child should be retested.  My own kid gets tested every few years.  I would do it sooner if she had symptoms (and some celiacs are symptom free!)

Your friend should request a complete celiac panel and do it nicely in writing.  Doctors just hate malpractice lawsuits.  The other choice is to get a PED or PCP  to order the panel.  This ENDO is not celiac-savvy.  I would worry about anything he does.  My neighbor is an ER doc.  He can not know everything, but he uses Dr. Google, consults with peers and relies on his training.  

  • 2 weeks later...
kim5798 Newbie
kim5798
Posted
  • Author

This is what I told my friend. Thanks for the input.

HannahBick Explorer
HannahBick
Posted

Many people can have some of the signs and symptoms of celiac disease, but not have celiac disease at the time of testing and then if you wait long enough they get celiac disease later on.

frieze Community Regular
frieze
Posted
On 6/5/2018 at 12:13 AM, kim5798 said:

Asking this question for a friend.  Her child has type 1 diabetes, diagnosed 2 years ago. At that time, they did the celiac blood tests & they were negative. Her son has various stomach issues & she is wondering if they could be celiac related. The nurse at the endocrinologist told her, "the tests were negative 2 years ago, he doesn't need to be tested ever again." My own child has type 1 diabetes and celiac disease & this did not seem correct to me. Can't the celiac disease develop over time??  

find out if that person is a nurse, if he/she is, report them to the board for malpractice.  i DO NOT mess around.

kareng Grand Master
kareng
Posted

Of course that is ridiculous! That is like saying you had a mammogram 2 years ago that was negative - so you couldn't have cancer now.  Of course she then talked to the doctor and got her tested?  

The standard of care for children with type 1 is to Celiac test every 2 years with no symptoms.  And to test all siblings every 2 years, also.  

Palvyre Apprentice
Palvyre
Posted

I had symptoms from my early 20s on. I was tested in my late 20s due to symptoms consistent with Celiac and the test was negative. I was tested again at age 38 because I had gotten extremely ill, that time it was a very high positive. I had developed osteoporosis by that point though.

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