Coeliac tests - mixed results. Confused!

[Harumff]

Hi all, I wondered if anyone had had a similar experience to us and what the outcome was.
Brief background is that son had bowel issues as a toddler put down to 'toddler diarrhoea' and as he was growing ok the doctor wasn't concerned about him and said he'd grow out of it. He did to a degree but, at just turned 8, he has bouts of being poorly (loose stools, pains, headaches etc) but can be pretty well most of them (apart from always having lots of smelly wind!).
After a bad bout last summer we were sent for tests which found his TTG was way above normal (152 vs normal of 0-15) and his iron was low. He was sent for an endoscopy fully expecting coeliac but we found out early this year that the endoscopy was normal.
His consultant still thought he was developing coeliac and wanted to wait 3 months and repeat blood tests. We had these recently and although his TTG had fallen slightly (this time 114 it was still v high) and his iron was lower than before despite having iron medicine.
The dr decided to do the coeliac gene test to know whether it's worth continuing down the coeliac testing route which we had and are waiting for results (could be august!).
She still seems to think it's coeliac but surely if he'd had issues since being a toddler then his bowels would be damaged enough for the endoscopy to show this? They took lots of samples so they shouldn't have missed it.
It also confuses me that he can have long spells of being well - I would have thought that coeliac symptoms would be constant if you're eating gluten all the time.
Any ideas/similar experiences? Thanks

I can tell you my own experience. I started with IBS after having ds now 8. I had a colonoscopy about 5 years ago which was clear but bowel spasmed during the proceedure which I was told was in line with IBS.

I took a variety of meds over the next 5 years and suffered so badly that sometime I would actually hsve to dash to the toilet before a meal was finished. By last christmas I was nauseous to the point I could barely eat, bleeding from bowel and in agony.

A family member suggested cutting gluten which I did, and saw an immediate improvement. Dr told me to eat it again for a blood test which I did. The result was negative. He agreed with me to try cutting anyway as said that you can be gluten sensitive but not coeliac. I have also read that blood test is not reliable.

I have been gluten free for 3 or 4 months now and my symptoms have improved massively. Nausea, wind and cramps have all gone. My guts are so much better. Strangely I have lost a lot of weight too without dieting in any way. I look and feel a lot better.

I would be guided by dr in the case of a child and diet as I don't believe in randomly removing a lot of food without good reason but it does sound like she thinks it is worth going with and no one will ever convince me gluten wasn't at the root of my problem despite a neg test.

Hi, thanks for sharing. I did think about just cutting out gluten and seeing what happens but the dr didn't recommend it - she wants a positive diagnosis so he can get all the follow ups the rest of his life and without this he won't get that. At least the gene test should either rule it out or tell us it's worth pursuing.... It's just so hard to know what to do for the best for him!

I'd follow it to the end of the road tbh. There are benefits to a formal diagnosis. But, I would speak to the dr again about trying it if you fail to get a coeliac diagnosis. There is a world of difference between a sensitivity and an allergy (ds has a food allergy and that is a definite acute response) but my dr was in full agreement that if it works, do it anyway.

If you visit coeliac uk's website, and find the info on diagnosing in children, you will find that if the anti bodies are over 100, and there is a positive gene test. The national guidelines say this is enough for a diagnosis, without a biopsy.

The biopsy can result in false negatives.

Definitely do not cut out gluten before all tests have been done, as this may make any future tests show negative for coeliac disease

Found the guidelines!

www.coeliac.org.uk/document-library/122-bspghan/bspghan-guidelines-for-diagnosis-of-coeliac-disease-in-children.pdf