So frustrated - coeliac blood test results

[wolvesarejustoldendaydogs]

I've been chasing up the blood test results for DS2 (2.9) The doctor who requested the test is away, so another doctor has looked at the result and says it is 'unlikely' that DS2 has coeliac disease, but however, that he is anaemic.

I don't know if the blood test results are on some sort of sliding scale? I'm not sure what 'unlikely' really means. This doctor has just looked at the results and doesn't know the context which is:-

a) DS2's older brother (4.6) was diagnosed with coeliac disease 2 months ago. It has been a long journey, but basically at DS1's age, he developed anaemia, became very tired (which didn't improve with iron supplement), irritable, and developed a large bloated, yet hard-to-the-touch belly, and also became an incredibly picky eater. In the last 2-3 months, DS2 has developed all these symptoms. We are pretty sure he is developing coeliac.

b) Since DS1's diagnosis, we have gone gluten-free at home for family meals. DS1 still has gluten-containing bread for sandwiches, and gluten-containing snacks at pre-school etc. However, he is eating much less gluten than he would normally be, which will affect the results. The doctor commissioning the test said this amount of gluten would 'probably' be enough, but it was impossible to tell for sure.

So... I am still convinced DS2 has coeliac. i feel I have failed him by not feeding him enough gluten to get a positive blood test result. And I don't know what the best next step is. i want him to get a confirmed diagnosis so that he can get the associated medical support (yearly check-ups etc.) and so that he is not tempted to 'cheat' when he is older.

I think I have to do one of the following:

a) Step up the gluten-content of his food for another 2-3 months and then have another blood test.

b) Make him gluten-free now, and in a year or so's time, introduce gluten for 2-3 months and then have a blood test.

c) Ask to have a biopsy which might show the signs of damage even though the blood test isn't convincing.

Any advice? What would you do?

Whoops, slight typo. It is of course DS2 who is having sandwiches and snacks with gluten in - not DS1!

Demand a biopsy. Sounds highly likely that he is coeliac to me, especially if he's anaemic. Ask for the actual blood test result too. 1-10 is the 'normal' range but false negatives are relatively common and given the family history I think you are well within your rights to ask for the biopsy.

Thank you freefrom. I am a bit worried about putting him through a biopsy and it being negative because he's not having enough gluten or the coeliac hasn't developed enough for it to show properly yet. Perhaps I should up the gluten content and then demand the biopsy?

Hi, I think you would also need to increase gluten content for biopsy also. Hope you get things sorted.

Yes, I am going to increase gluten content too. I speak to the doctor later this week and I think I will demand the biopsy. It will take several weeks to arrange that anyway I should think, so will vastly increase gluten while we are waiting.

I posted on a coeliac board as well and someone said that the blood tests are unreliable on children under 3 - they strongly recommended having the biopsy as well.

I agree, up the gluten intake and it will probably be at least 6 weeks until the biopsy anyway so enough time to make sure you get an accurate result one way or the other. Coeliac UK have advice on their website about how much gluten you should be eating on a daily basis before having the tests.

We've also been told blood tests unreliable under three.

so even if the blood test is unreliable, the biopsy should still be able to pick up signs of damage, is that right? I think I am going to push for having a biopsy (and have already massively upped the amount of gluten DS2 is eating) but I will hate myself if I put him through that and the biopsy is also a false negative, IYSWIM.

It's my understanding that you don't get false negatives from biopsies unless the person has been totally gluten free for some time so as long as your DS is still eating gluten then the results should be accurate. Good luck.

Thanks freefrom, that confirms it, I will push for a biopsy. I have been given quite a lot of useful clinical references by a poster on another board, and the conclusion I've come to after reading all of that is that we definitely need a biopsy. In the meantime we are increasing his gluten-content considerably too.

It is a long old process. Not helped by the fact that we never see the same doctor twice so I always feel I'm starting again from the beginning.

I know the feeling all too well. Good luck and let us know how you get on.

Paed has referred us to the GI specialist, which is good - so got to wait for that appt now and then see if she will agree to the biopsy...

That's good news. Keep us posted.

Just to let everyone know. I spoke to the paed GI today (she also diagnosed DS1). She says that despite the negative blood test there's still a good chance that DS2 is coeliac. She is booking him in for a biopsy in June.

I will be very glad to get it over with. Just got to keep up the gluten intake until then!

That's great news, at least you should get a definitive answer now. Good luck.

Thanks freefrom (namechange by the way, not a random other poster!) I will post back after the biopsy to let you know how it goes. Thanks for all your support on this and other threads.

Hi wolves,
just a quick thing - before you up his gluten intake massively, please talk to the consultant as I have been given completely different advice from 2 consultants I spoken to, one of whom is an expert in coeliac.

We had problems in following the advice given on all the sites as we had to put DS2 on gluten free (as per my other thread) as he was terribly ill. The consultants (both the gastro and generic) that for a small child like my son (4) 2 weeks on the equivalent of ONE piece of toast or weetabix per day is more than enough for the villi to change significantly enough for them to make a diagnosis.

So before you start on a massive gluten intake I would check first. For what it's worth, my DS2 had positive blood tests despite being already virtually gluten free as he had put himself on a gluten free diet as he had realised that wheat made him sick and would not touch anything like pasta, bread, pizza or even more subtle gluten items!! Good luck with it all and let us know how it goes xxx

Really interested to read this as we are having the same issues with DD 2.7, first set of bloods came back negative but we have to retest after stuffing her full of gluten (she was on a partial gluten free diet too) for 3 months.

Hello there - yellow, that's very interesting re: gluten intake. I will see what consultant thinks.

Norfolk - we were given the choice of doing the same - eating gluten and having another blood test in 3 months, or moving straight to biopsy.

We decided to do the biopsy, on the grounds it would get to a resolution quicker. Has your daughter had her IGA levels checked? Some people with low IGA (or something) will always have negative blood tests even if they are coeliac. I think they should always test for that when they do a coeliac blood test but apparently they don't.

Our consultant was very supportive of us moving straight to biopsy as his symptoms + family history are very suggestive of coeliac.

Her IGA levels are low so that might explain it. Unfortunately because we have moved hospitals (district to specialist) the blood tests need redoing before they will recommend a biopsy