New Diagnosis Help

[Mamatofour]

Hello,

I just got the results of my four year old son's lab work. We had them done because he is constantly complaining that his tummy hurts, near constant loose stools with a sandy texture, constant itching, trouble sleeping etc.

I do not have the paperwork in hand yet, but I was told over the phone to schedule an appointment with the Gastroenterologist because his tissue transglutaminase IGA was negative but the IGG was positive. I was told his was 33.30 and it needed to be below 19.99. Could this still be celiacs or a non-celiacs gluten sensitivity?

We have plenty of family history concerning auto-immune disorders, hubby and oldest son have type 1 diabetes, oldest don also has non-celiacs gluten sensitivity as well as low thyroid.

Thanks so much for any insight!

[nvsmom]

A positive tissue transglutaminase is never caused by non-celiac gluten sensitivity I'm afraid.  The tTG IgA and tTG IgG indicate that the intestines are being attacked and damaged by the immune system.  Although it is usually the tTG IgA that is positive rather than the tTG IgG, it is still a highly specific test for celiac disease - especially when it is a fairly elevated result and not just a weak positive (like a 21).

Celiac is most commonly co-occurring with T1D and hypothyroidism.  With such a strong family history, I would have little doub that the positive result was from celiac disease.  Your child with NCGS should be retested for celiac disease if they are consuming any gluten.  Celiac can test negatively early in the disease and "change" into celiac disease as the disease progresses.  With celiac disease in the family, there is a good chance that NCGS is in fact celiac disease.  Your hubby and oldest son should be tested, and retested every 2 years from now on. Celiac can develop at anytime, and their risk of developing celiac disease has now jumped up to somewhere around 1 in 10 to 1 in 22.  

Do not start a gluten-free diet yet.  They may want to do more testing, and a gluten-free diet will cause false negatives. 

Here's some reading on the tests: Open Original Shared Link

Good luck with the gastro.  Let us know how it goes.

[Mamatofour]

Thank you so much for your response! We see the gastro next week. I will update after our appointment. It is hard for me to keep giving him gluten because I just want to help him stop hurting. but I know we have to finish the testing process first.

[nvsmom]

  Understandable.  Perhaps give him most of his gluten later in the day so it doesn't impact his waking hours as much.

[Mamatofour]

We had our appointment with the gastro yesterday. She confirmed that the positive IGg was indicative of celiacs and suggested following up with a scope and biopsy. Hoping to hear from the scheduler soon. I will update with his results.

Thanks so much for your help!

[nvsmom]

If he isn't doing well, let the office know because sometimes they'll bump the young kids up in the schedule by a few days or weeks.

Good luck. (hug)