Confused! Can Ttg Reduce By This Much While Still On Gluten?

[CaveMum]

This is the background:

3 year old son has had symptoms of coeliac disease (bloating, tummy ache, diarrhoea) starting early 2012.

*27 June 2012. Blood tests done. TTG was 262, DGP 170.

*31 Aug 2012. Upper endoscopy carried out. Biopsy "normal" Marsh stage 1/2

*1 Sept-10 Sept 2012. Gluten free diet. Gastroenterologist contacts us with results of biopsy, advises us to restart gluten, and a follow up biopsy is booked for 21 Dec 2012.

*6 Dec 2012. Blood tests repeated. TTG now only 54, DGP down to only 77.

*21 Dec 2012. Awaiting biopsy.

Can anyone shed any light on this? Is it normal for TTG to fluctuate by so much?

Apart from the 10 days in early September, he has been on a gluten-containing diet this whole time.

The only other factor I can think of is that the first half of the year was quite stressful for our 3 year old. His brother was born in Feb, and he also started pre-school.

Thanks in advance for your help on this one!

[Skysmom03]

Could it be that he was eating less gluteny products at that time? One time ( the initial test at ped's office) my son's main test was 25 but then three weeks later ( this was taken at Ped GI's office) was up to 67. His biopsy showed an estimated three years damage.

[CaveMum]

Could it be that he was eating less gluteny products at that time? One time ( the initial test at ped's office) my son's main test was 25 but then three weeks later ( this was taken at Ped GI's office) was up to 67. His biopsy showed an estimated three years damage.

We wondered whether we'd changed his diet without realising, but in fact in the last three months, while waiting for the 2nd biopsy, we've made absolutely no restrictions on gluten (though it makes me feel sick thinking what gluten is doing to him). Is there anything else apart from gluten which influences TTG?

[shadowicewolf]

The test is the IGA TTG one correct? That one tests for damage done in the intestines if i remember right. It is rare, but other conditions such as chrons disease (sp?) and some other AI conditions can be a culprit. Celiac is the main one that does it, however.

[CaveMum]

The test is the IGA TTG one correct? That one tests for damage done in the intestines if i remember right. It is rare, but other conditions such as chrons disease (sp?) and some other AI conditions can be a culprit. Celiac is the main one that does it, however.

Thanks for your response. Yes, it was the IgA TTG. Endoscopy/biopsy is on Friday, so I suppose there will be a chance then to talk with the Gastroenterologist about the situation. In the meantime, I will perhaps look into crohn's and other auto immune disorders

[mamaupupup]

Hi there,

I believe a positive test (and I believe his was) is very accurate and specific to Celiac. We have an incredible GI who trusts TTG enough to diagnose Celiac on that test alone. (One daughter diagnosed through positive TTG and we ended up also doing genetics and endoscopy which revealed a little, but not much damage. The biggest outcome: she was a changed child off gluten!).

There are a good number of false negatives (including mine--I had a positive biopsy and never had positive bloodwork). I had so many food aversions that I wasn't eating much gluten as it was. Same was true for one of my daughters (negative TTG and ultimately diagnosed Celiac).

My biggest question is: how was your little one feeling/acting when off gluten?

And, my second biggest question is: what does your instinct tell you?

Sending you lots of support!

[CaveMum]

Thanks for your response. When we had our consultation in October with the gastroenterologist to discuss the positive TTG/negative biopsy, she mentioned that he had been tested for EMA as well, which is specific only to coeliac disease. I believe at the very least he has gluten intolerance; whether or not he has "coeliac disease" will depend on the biopsy this Friday. Either way, we have decided he will be going on a gluten free diet after this second biopsy. There definitely will not be a 3rd biopsy. In the meantime I have read a couple of Rodney Ford's books and in retrospect, we should have refused the second biopsy and just taken him off gluten months ago. Our gastroenterologist was very insistent that a second biopsy was necessary - this specialist is in fact the Head of Paediatric Gastroenterology at our country's leading children's hospital - which made it difficult to refuse the procedure.

When he was off gluten in early September, his improvement was very rapid. His bloated tummy went away and the bowel motions firmed up. For the first time ever, he complained that it was hard to do a poo! His sleeping improved and we thought he seemed happier and less irritable. I am really looking forward to seeing what happens over the next few weeks, once he is off gluten. It makes me feel quite sad that he has had such a rough year; I really wish that I had known enough at the time to disagree over the need for a second biopsy. However, he only has a few more days on gluten, and then he's done with it for good.