Should I be retested?

[RachelM]

I’m 16 years old, just before I turned 14, I had blood tests done for a separate reason and found out that I am slightly anemic. I wasn’t informed at the time, but recently a family member has been diagnosed with Celiac disease and so everyone in the family have been tested. However, when I went to the doctor to get tested for celiac, I was told that my previous blood tests were also tested for celiac, but it came back as normal, so I didn’t get tested again. I have pretty much every symptom and before I seen the doctor I was determined I had it, and part of me still is. Would my tests from 2 years ago still be valid? Or could I have “picked up” celiac in the last 2 years? I’ve read many posts about this and many people have mentioned NCGI, would NCGI be picked up on a blood test? Should I revisit my doctor and persuade them to give me another test?

[cyclinglady]

5 hours ago, RachelM said:

I’m 16 years old, just before I turned 14, I had blood tests done for a separate reason and found out that I am slightly anemic. I wasn’t informed at the time, but recently a family member has been diagnosed with Celiac disease and so everyone in the family have been tested. However, when I went to the doctor to get tested for celiac, I was told that my previous blood tests were also tested for celiac, but it came back as normal, so I didn’t get tested again. I have pretty much every symptom and before I seen the doctor I was determined I had it, and part of me still is. Would my tests from 2 years ago still be valid? Or could I have “picked up” celiac in the last 2 years? I’ve read many posts about this and many people have mentioned NCGI, would NCGI be picked up on a blood test? Should I revisit my doctor and persuade them to give me another test?

Hey Rachel!  I am glad that you are advocating for your health.  

You can develop celiac disease at anytime in your life.  It is recommended that you get tested every two years or so, if you have a first-degree relative (e.g.  sibling or parent) even if symptom free.  So, you can get retested and maybe you should since a family member (even if it is a cousin) was recently diagnosed.  There is no test for NCGI, instead celiac disease is firmly ruled out before a NCGI diagnosis is given (unfortunately).  

Has your anemia resolved?  That should be rechecked until the doctor sees a normal result.  What kind of anemia?

This is a good time for you and your parents to keep and maintain your medical records for life.  It is your right.  See if the complete celiac panel was given.  Sometimes they just run the TTG which is good but does not catch all celiacs.  

Let us know if you need more information.  Try to stick to reputable sites that are not selling you something.  The University of Chicago has great information on celiac disease.