u/Weekly-Comment2458

Hi everyone,
I have two children that have been recently diagnosed with coeliac.
During the diagnosis process I had my ttg IGA tested because after researching coeliac it made so much sense that I have it. I’ve had textbook symptoms from at least 7 years old and with two of my children having positive blood tests and at the time were a high probability of having it, I thought my test would be positive but it wasn’t. My ttg IGA was <1. I requested my total IGA to be done which came back right in the middle of the normal range. I did ask for my ttg igg to be tested but she refused and said the bloods were reassuring enough that I didn’t have coeliac disease.

At this point I’m aware there’s a good chance I don’t have it but had read about seronegative coeliac disease and wanted to rule this out so I battled with my gp for a referral to gastro and she eventually agreed.

Fast forward to my telephone appointment with the gastro consultant last Friday. I explained my symptoms and history, said my concerns about coeliac and he said your blood test is negative so it won’t be that. I said but that’s not 100% is it and he said yes it is. I then said about seronegative coeliac and he said that wasn’t a thing and I was getting confused with non coeliac gluten sensitivity, which I already know about and wasn’t confused with, then he just went on to explained what that was and the difference between that and coeliac.

He did say he would do an endoscopy and colonoscopy and take some biopsies from my small intestine to “look for anything else”. So now I’m unsure if coeliac will even be tested for. Does anyone know if it’s something that’s automatically done for all biopsies?

Whatever happens I will be cutting out gluten after the scopes as I do think this is causing me my problems whether it’s coeliac or an intolerance but I would like to know either way.

Any help would be much appreciated!

Hi everyone,
I’ve been lurking here for just over a year whilst I’ve been going through the diagnosis process with two of my children. My 15 year old recieved his endoscopy results today confirming a diagnosis of coeliac disease. We were seen immediately after by a dietician which was fantastic as I’d expected to be put on a waiting list. However the dieticians advice on may contains contradicts everything I’ve read over the last year.

He advised that they now don’t tell patients to avoid may contains anymore and they are fine to eat. I probed further and he said he went to a conference a couple of years ago which was attended by many professionals as well as coeliac uk, and they all agreed that the risk of being glutened by a may contain is very small and that companies mostly add those to cover themselves. He said there was a study that tested foods with a may contain and foods without them and the results were both similar. And as the may contain is voluntary for a company to add it could be possible for two different companies to make the same product on the same line and one would have a may contain rand the other would not.

I appreciate that guidance changes and of course being able to include may contains in my sons diet would make the transition easier and less restrictive, but after spending a year reading they should be avoided I’m reluctant to accept they’re okay.

He did say that they advise its okay to eat may contains as long as their bloods continue to decrease and if in a couple of years they were not within normal limits or just above then he would advise to cut them out.

Has anyone else received the same advice?

My other son is awaiting second blood tests to confirm his diagnosis and when he does I’ll have the opportunity to speak to his doctor and potentially another dietician so I’ll ask them about it but in the mean time I’d appreciate any advice!