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Two High Ttg Tests - Does My Daughter Have Celiacs?
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My 9 year old daughter has been battling anxiety for 4 years, it became very bad this past April and we have been taking her to a therapist.  Her Pediatrician decided to do blood work and her tTg was greater than 100 - everything else was normal.  The Dr. said it may be a false positive and ran the panel again, this time her tTg was 47 - everything else was normal.  In addition to the anxiety, she has been dizzy, had trouble sleeping and developed a patchy (but not bumpy/blistery) rash on her arms and legs.  We've been referred to a GI and I'm wondering why?  I really don't want her scoped if the blood test results are enough to diagnose her.  Should I start her gluten free or is the blood work results not enough?  Your thoughts?

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was it the same lab doing the test both times?  

 

My 9 year old daughter has been battling anxiety for 4 years, it became very bad this past April and we have been taking her to a therapist.  Her Pediatrician decided to do blood work and her tTg was greater than 100 - everything else was normal.  The Dr. said it may be a false positive and ran the panel again, this time her tTg was 47 - everything else was normal.  In addition to the anxiety, she has been dizzy, had trouble sleeping and developed a patchy (but not bumpy/blistery) rash on her arms and legs.  We've been referred to a GI and I'm wondering why?  I really don't want her scoped if the blood test results are enough to diagnose her.  Should I start her gluten free or is the blood work results not enough?  Your thoughts?

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was it the same lab doing the test both times?  

Yes

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I am no doctor but I have never heard of a false positive tTg that was that high.  In fact, there really are no false positives but there are certainly a lot of false negatives.  It would be good to know if the same lab did both tests but they are both high.  Other considerations.....it is never normal for a 9 year old to suffer from anxiety.  It isn't normal for an adult, either, and can certainly indicate an underlying condition.  I was extremely dizzy at times before my celiac diagnosis so that can be a strong symptom of celiac, from a neuro point of view. It resolved completely on the gluten-free diet.  So...your daughter has 2 neurological symptoms going on.

 

Then there is the rash.  Rashes are extremely common with Celiac. Most people here will tell you to go see the GI and I would also but if you really do not want her scoped, then you have the right to decline. You could have them repeat, yet again, a full Celiac panel and see what happens.  You do have the option of a dietary trial to see if her symptoms clear up.  Do you have any family history of celiac to indicate she could have it?  That doesn't mean anything, though, as many of us are the first to be diagnosed.  There are always more. But a family history makes it a bit easier to point doctors in the right direction.

 

I think doctors generally like to see more than one positive test on a panel because, God knows, they make us jump through many hoops for a diagnosis.  I would go see the GI and ask for a repeat test and if it comes back high again, as the parent, you can decide what the best way to go would be. Just be prepared for push back from them...they don't like it when people refuse biopsies.

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It was my understanding that the endoscopy would only show damage, my thought is at 9 years old perhaps there won't be much damage and the test won't show anything. Are they able to tell more from the scope than I thought?

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Ditto Gemini. False positive tTG's are usually barely above the normal range, and almost borderline. For example, if the upper normal limit was 20, I would consider it borderline if it was a 22.

 

Did they run any other tests? The EMA is similar to tTG but is positive for extensive damage.  The DGP tests are considered to be very good tests for kids...

 

If you need an "official diagnosis"  for school accomodations or something, you should probably keep her on gluten so an tests the GI wants to run (whether blood or an endo) will be accurate. If you feel comfortable moving ahead to the gluten-free diet now, and foresee no need for further testing, she could start eating gluten-free right away.

 

Was the doctor comfortable diagnosing her with the tTG test? I was diagnosed with a tTG and an EMA but I don't think it is because my doctor is foreward thinking or learned in celiac disease, rather I believe it's because he is a lazy doctor who doesn't really care to get to the root cause of health problems.

 

Best wishes in whatever you decide.

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glad nicole and gemini were able to give more specifics.  good luck in whatever path you choose!  

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