When to do endoscopy after negative panel?

[dmjgthompson]

Hi all,

I did a test in August. My son is on a gluten-free diet at the recommendation of his pediatric endocrinologist who suspects NCGI. I was on a low gluten with him for six months but I decided that it wasn't really fair to put him on a gluten-free diet based on mostly symptoms (To be fair, his ADHD like symptoms have gone down a lot and he has become one of the best students).

So I got myself tested in August with the endocrinologist. My symptoms - extreme brain fog, unexplained weight gain after years of being able to eat like a horse and stay thin, mood swings, constant dandruff, daily constipation. I have cut down considerably on food but I have never been heavier!

Result. tTG-IgA negative, tTG-IgG positive. Endo just told me to go gluten-free and see if symptoms improve.

At the recommendation of this forum, I went to a gastroenterologist in September. He said I should do a gluten challenge for a few months, which I did, although it was difficult as I already got accustomed to eating less gluten.

All screening for thyroid, diabetes, came back fine.

 

So my results came back, seems that my tTG-IgG is within normal range this time. I was surprised to see that tTG-TgA was not tested this time. The only thing that I was deficient in was Vit D. My Eosinophils elevated (like in my previous results). ESR Auto was high.

My gastroenterologist said I had very mixed results so suggested an endoscopy. He did genetic testing and I got positive DQ2 and DQ9.

 

My questions are

1. Should I wait a few more months before I do the endoscopy and have a few more months consumption of gluten? I understand that false negative biopsies do happen.

2. Should I then ask for another celiac panel to be done? If so, which specific tests should I ask my doctor to request? I live in Singapore where there are just fewer experts so I can't keep changing doctors. Some help from this forum would help immensely.

 

Thank you.

 

 

 

 

 

[cyclinglady]

  On 2/2/2018 at 8:57 AM, dmjgthompson said:

Hi all,

I did a test in August. My son is on a gluten-free diet at the recommendation of his pediatric endocrinologist who suspects NCGI. I was on a low gluten with him for six months but I decided that it wasn't really fair to put him on a gluten-free diet based on mostly symptoms (To be fair, his ADHD like symptoms have gone down a lot and he has become one of the best students).

So I got myself tested in August with the endocrinologist. My symptoms - extreme brain fog, unexplained weight gain after years of being able to eat like a horse and stay thin, mood swings, constant dandruff, daily constipation. I have cut down considerably on food but I have never been heavier!

Result. tTG-IgA negative, tTG-IgG positive. Endo just told me to go gluten-free and see if symptoms improve.

At the recommendation of this forum, I went to a gastroenterologist in September. He said I should do a gluten challenge for a few months, which I did, although it was difficult as I already got accustomed to eating less gluten.

All screening for thyroid, diabetes, came back fine.

 

So my results came back, seems that my tTG-IgG is within normal range this time. I was surprised to see that tTG-TgA was not tested this time. The only thing that I was deficient in was Vit D. My Eosinophils elevated (like in my previous results). ESR Auto was high.

My gastroenterologist said I had very mixed results so suggested an endoscopy. He did genetic testing and I got positive DQ2 and DQ9.

 

My questions are

1. Should I wait a few more months before I do the endoscopy and have a few more months consumption of gluten? I understand that false negative biopsies do happen.

2. Should I then ask for another celiac panel to be done? If so, which specific tests should I ask my doctor to request? I live in Singapore where there are just fewer experts so I can't keep changing doctors. Some help from this forum would help immensely.

 

Thank you.

 

 

 

 

 

Expand Quote  

I am glad that your son has improved on the gluten free diet!  

1.  Two to four weeks is enough time for an endoscopy to capture any damage.  It is much longer (8 to 12 weeks) for the blood tests because it can take that long for antibodies to show up in the bloodstream.  

2.  I would consider asking for the DGP and EMA tests.  I personally never had a positive on the TTG or EMA, yet I had moderate to severe damage.  The TTG is great, but it does not catch all celiacs.  Make sure the run an IgA deficiency test.  In the case of celiac disease testing, it is used as a control test.  

The goal is to achieve good health.  My hubby went Gluten Free 12 years prior to my diagnosis per the advice of my allergist and his PCP.  He refuses to do a challenge.  We know that  gluten affects him and being sick for weeks is not an option.  So, it is possible to be gluten free without a formal diagnosis.  

Good luck!  

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