Newly diagnosed coeliac DD1

[lloydjam]

HI there,

We have just got a blood test result back for my daughter who is 12 and it says its positive for Coeliacs (tbh its a relief after so many years of stomach pain ). My question is will she automatically need to have a biopsy to confirm this or is a blood test sufficient? Im asking as my daughter is needle phobic and the thought of a general anaesthetic is not good at this moment . Thanks in advance for all you mums out there

Have you also posted on the Allergies board? I think there are parents of coeliacs who may have more advice for you.
No idea if a biopsy is needed but your daughter could have gas to go under if it was a real problem so worth speaking to Anaesthetist if you have to go there

A biopsy is the gold standard for diagnosis, but it doesn't change anything tbh.

If your daughter really doesn't want one, then talk to the gastros about whether they insist on a biopsy to access followup (and indeed, what is offered in your area anyway)

I know a diagnosis is daunting, but you do get used to the whole food thing, and 14 years on from my diagnosis, there isn't a single thing it has stopped me doing. And it gave me my life back after feeling so awful

Thank you both - I have another question - have you ever known a positive blood result to be negative under biopsy? im just curious as to what the diagnosis would be if the results were mixed and which one is taken as the more accurate.

thank you !

I've heard of negative blood tests and positive biopsies, but never the other way round

Do not change her diet yet until you have seen a specialist. If they do plan to do a biopsy she will need to stay on a diet including lots of gluten, otherwise the results will be negative.

At her age she would have the procedure done under general anaesthetic. The endoscopy and biopsy itself takes less than 5 minutes. The doctor my allow her to have it with a local anaesthetic spray (lots of adults cope well with it) but it would depend on how compliant she would be.

Yes a biopsy will needed to be done under GA and as others have said keep her on gluten until the test has been done, Again i have heard of negative blood tests and positive biopsies but not the other way round.
The staff will be able to deal with the needle phobia too, she will be fine.

sorry not sure I explained - ds had op at Christmas, he is 2, had gas to go under then they took blood and canulated and gave GA rather than go through what I had with ds2 where they tried to canuate left hand, couldn't find vein, so tried right hand (he was 3 and by now hysterical) then they decided to knock him out with gas - took a few of us to hold him down... so there are ways round it if you want to know for sure, don't let needles thing stand in way of being totally sure about diagnosis if you and dd wanted that

DS1 had the biopsy last month. They sat him on my lap for the anaesthetic, with his hand (which had anaesthetic cream on it) behind my back so he couldn't see the needle go in. He went under very calmly.

I read some research that said if the TTG is over 100, the biopsy is almost always positive. Over 50 is also usually positive but not as reliable.

that's interesting, jelly, could be a way to avoid biopsy. it is horrid seeing yoru child have a general anesthetic.

I heard that there is a move amongst paediatric gastro-enterologists, supported by Coeliac UK, to try to avoid endoscopies in children where possible. Presumably this would be in cases where there was a family history of coeliac disease or where the blood test results were pretty definitive.

When DD1 was diagnosed in 2006 (at age 2.8), she had an endoscopy which they said was pretty much a formality - the TTG levels in her blood test were pretty high. She had gas to go under - she sat on DH's lap while the anaesthetist just held the mask under her nose till she went floppy and then DH laid her on the bed.

When the DTs were diagnosed a few years later (they were nearly 4 by this time), I asked the paediatrician if they had to have the endoscopy to confirm their diagnosis, given the family history (DH's nephew had also been diagnosed coeliac in the meantime). At first he said they did have to, but eventually I spoke with the consultant paediatric gastro and he agreed it was unnecessary.

Unfortunately for your DD, blood tests to at annual check-ups seem to be the norm, so she may yet get used to the needles, but you may be able to avoid the GA/endoscopy for now.

As the others have said, it's pretty easy to get used to the g-f diet once you get started. I had been so worried about DD1 that to find all(!) I had to do was change her diet to get her healthy was such a relief - and within 2 weeks she was a changed child - boundless energy, no more awful constipation, vomiting or diarrhoea and she actually enjoyed her food for the first time ever!

Best of luck.

That's interesting, tkband. We are noticing coeliac symptoms (we think) in DS2 now, and have an appointment next week with the paed to ask for a blood test. I will ask whether, given DS1's diagnosis, it would be necessary for DS2 to have an endoscopy if the blood test is positive.