Conflicting blood results and symptoms in 2 year old

[KatieH]

Hi all,

Just as an FYI before I start, we are in the UK so getting to see paediatricians or specialists needs referrals from a GP. Biopsies will rarely be done on children and we also don't usually get a copy/to see blood results.

My two year old son had severe reflux as a baby, then started having severe allergy symptoms, gut issues and rashes etc, when he was one. Removing milk and eventually soya from his diet helped a lot, especially with the rashes, but he still wasn't right and was eventually referred to see the paediatrician. There was a 6 month waiting list and in that time his gut issues got worse and worse, he would scream most of the night, be lethargic and pale through the day, unexplained fevers, bloating, diarrhoea etc. I suspected it was possibly wheat/gluten.

In July we finally saw the paed who agreed with me and ran the antibody and genetic blood tests. We wouldn't get the results until our next appointment and by September we were at our wits end waiting. I decided to remove wheat and gluten from his diet and within a few weeks he started showing major signs of improvement. We finally got the results in November and although the genetic testing came back as positive the antibody tests were negative (I don't know anything more specific than that). Because he was so much better on a gluten-free diet she concluded that he wasn't coeliac, he must be gluten intolerant instead, told us to keep him dairy, soya and gluten free and come back in a year.

After much internet searching it seems that false negatives are quite common in little ones and not uncommon in adults either and that even with a negative antibodies result it could still be causing damage internally. Is this right? I'm confused as to where to go next. Should I pursue an official coeliac diagnosis in a years time, even though that will mean putting him back on gluten? Just today he is suffering after eating a small cake at a party yesterday when I wasn't looking. I don't want to make him sick for weeks on end to possibly have another negative antibody test knowing they wouldn't even consider doing a biopsy. 

Sorry, that turned into a bit of an essay!