Negative coeliac test- do I take it further?

[happypiglet]

Sorry might be long boring post. My DS2 (5) was referred to a dietician about a year ago as he was underweight and having bowel issues.
We did the usual blood tests one of which was for coeliac disease which came back negative.
I then put him on a lactose free diet which seemed to help (other family members have lactose/ milk intolerance) altho the dietician seemed to think gluten was the more likely culprit. She said that a negative coeliac blood test did not mean he definately doesn't have coeliac disease.
Altho the lactose free diet helped for a bit his symptoms returned and he gradually got worse again.
I have now put him on a gluten free diet and again he has improved.
We see the dietician next week and my dilemma is this. I have read in literatire that blood tests are not 100% accurate and he would need to have a biopsy of his small intestine to def rule in or out coeliac disease.
Half of me wants to do this so I now how strict I need to be with his diet or whether an occasional bit of gluten would just make him uncormfortable but not be very damaging. The other half doesn't want to put a small boy through any sort of medical procedure that is not warranted. Any experinces / help appreciated.

WE have been through this, negative bloods for both coeliac and lactose etc. After lots of discussion and a stool sample which showed sugars my DS2 (age 3) is no on a completely diary free diet. The difference is marked, it's been life changing, quite literally for him as he has been able to potty train now he's not doing 6 or 7 poos a day!

We had a month's trial of lactose free and saw an improvement for a bit but have needed to be very strict about not even eating anything that says it has been made in a factory that handles milk and we seem to have cracked it.

If your DS does need to have a biopsy, which will identify any coeliac damage to his intestines then he still needs to be eating gluten as the body starts to heal when he's not eating it and the biospy may not pick up the damage.

Good luck!

Thanks for that. My DS2 was going 6 times a day and very windy which was becoming a problem for him esp at school. LF helped to start with but then his sypmtoms got gradullay worse again but GF seems to have reverted him to normal (for now). He also had the Lactose poo test but it was negative as well.

Hi Happypiglet - Your DS needs to be eating gluten if he is to be tested for coeliac, as it is the antibodies in the blood that they test for. If there is no gluten in his diet then there won't be any antibodies, and therefore a negative result.

AFAIK you can only have a gut biopsy done if you have a positive blood test, so if the bllod test is negative when he is eating gluten then I think its safe to say its not coeliac, but it could still be a gluten intolerance as they are not the same thing.

You need to consult with your dietician before you cut any foods out, as self diagnosis is not accurate. I think that you have to re-introduce one food before cutting out another, otherwise you don't know which one is having an effect.

Hope this helps.

Hi grapes.. he was eating everything (had not cut anything out) when he had all his initial tests. It was the dietician that got me wondering as she said that it was possible to get a negative result even whilst eating gluten... so confused!

hmm then I don't really know. It is so confusing though, I remember my brain being frazzled when I though DD2 might have coeliac.

If I were you then I would just talk to the dietician about your concerns, and then do as she suggests. Hopefully she knows what she's talking about and will be able to advise you properly.

My ds2 recently had an endoscopy (with biopsies of the gut) to investigate unexplained vomiting and poor weight gain. A gastroenterologist friend thought he might be coeliac. Apparently the blood test can be as little as 20% accurate for childen and therefore biopsy is still the "gold standard".

I was terrified of ds2 having the endoscopy (he is 2.3 years). but it was fine. The worst thing was the general anaesthetic. But, he was brought into the hospital at 8am on a saturday and was ready to go home by 1pm. It is scary to see your lo go under GA though. (I cried).

Sorry been away so not replied... thanks Unseen for your experience. The dietician basically told me off (in a nice way) for starting GF on my own as we need a biopsy and he needs to be on gluten first for some period of time she wasn't sure of.... So he is back on gluten, back to awful bowel issues and I now feel I am poisoning him at every meal.... well that serves me right for trying to be proactive!
Anyway biopsy it is...glad to hear it isn't too bad Unseen...although like you I am scared of a GA for him (he's asthmatic too).... the dietician couldn't tell me what the procedure involved... so not much help there.
I guess we will get this sorted at some point.. keep plodding on I guess

My son (8 yesterday) is coeliac - just coming up to 11 months since diag. The biopsy was fine - and my LO is not a brave boy and petrified of needles but actually doesn't remember anything about the day. nce I took him off gluten completly it took about 5 days to see an improvement and then he has just got better and better. Most coeliacs are Lactose intolerant at diag. but can tolerate milk as the bowel heals. FWIW his symptons where horrific diahorrea (to the point where it was just running down his leg !) and bad wind. He also had tummy ache but had never told me this - we think now it is because he always had a poorly tum so did not know any different.

Any questions just fire away .....

Nota I had to respond to your post!

My son has exactly the same symptoms - particularly the diahorrea. His Lactose intolerance was diagnosed at 7 months and he was put on Neocate, but only improved about 50%. He was tested for coeliac at 7 months also, but this showed negative (now I know prob because he wasn't eating any gluten!).

Our paed has tested for coeliacs again given when we remove it from his diet he is SO much happier! Your mention of most coeliacs being LI has given me hope we're on the right track!

Hope the endoscopy goes well Happy! :)

Thank you ladies... still waiting to hear from dietician re how long he has to go back on gluten for and how long we will need to wait for biopsy.

I do think he may be a bit LI too as taking him off this did work to start with but then he went down hill again.. its so useful to chat..thanks again

For the biopsy to show coeliac you have to be eating a decent (like 4 slices of bread) a day for 6 weeks - rubbish I know when they are suffering but its worth it to get the right answers.

One of the worse bits for me was the waiting afterwards - it took 4 weeks to find out and then I chased them and the doc rang me back that night and left a message on our answermachine : Quote: "Right I have the results of XXXX tests and the blood test is positive for coeliac and his bowel is positive too so he is coeliac and someone wull be in touch. Thank you, goodbye" I STILL have this message ........

Just want to add an alternative view. My DS had slow weight gain/dropped off centile charts at 6 months, had pale, smelly diarrhoea constantly and tummy pain. We put him on a lasctose free diet which seemed to help and saw paeds and dieticians.

The blood test for coeliacs was suggestive but not conclusive. Before going ahead with the biopsy, the paed suggested we try a massive dose of metronidazol (I think that is the right name - it is a fairly strong antibiotic).

We did so, expecting not much, but after a few weeks the symptoms did go. DS (5) now has no issues at all with his guts - despite having big problems for the first few years of his life.

Maybe worth a thought/ask of your paed?

Best of luck

Thanks both.
Nota- gosh thats a lot of gluten.... will look at his diet and see if he is getting there..
Away- thats interesting and glad it worked out for you. Since putting him back on gluten all his sypmtoms have returned so I do think it is that but we will see.

Hi,

NICE (the government body) say that in adults if a blood test is negative but coeliac disease is still suspected then a biopsy can be done. There is no definative evidence about how much gluten you need to eat before a coeliac screen but the rule of thumb is to eat the equivalent of 4 slices of bread a day for at least a month (for adults).

Metronidazol treats gut infections and would not make any difference if it is coeliac disease.

If the biopsy comes back negative it may be worth ruling out food intolerances such as wheat and yeast as his intake of these may reduce when following a gluten free diet, therefore causing a reduction in his symptoms ask the dietitian about this if you get a negative biopsy.

I would definately have the biopsy done for a number of reasons;

• if it not coeliac disease you don't want to make him follow a restricted diet long-term.

• As he gets older it may be difficult to get him to stick to it (esp as a teenager!) but if it is coeliac disease at least you have more evidence to encourage him to stick to it.

• if it is coeliac disease and it is not confirmed you may let him have small amounts of gluten - this may not cause any symptoms as different people can tolerate different amounts of gluten before having symptoms (some people have no gut symptoms at all) but damage can still be don to the gut.

• if it is coeliac disease but no official diagnosis is made your GP is unlikely to prescribe gluten free foods which will make life quite expensive as buying these products long term will cost a lot.

Good luck hope this helps

Thanks emmylou thats really helpful. I agree I think that a biopsy is a good idea its just a little worrying as I don't know what the procedure involves and nobody wants to put a 5 year old through any 'surgery' uneccessarily... But I agree that I need to know for sure as I guess we can then decide how strict to be on his diet....and I guess if it is an intolerance he may grow out of it?
General anesthetics scare me senseless!

happy piglet - I wish you luck with your decision making. I am only suggesting you speak to your paed about the anti-b's as it is a reasonable step you can take before you have to go through a GA. We were not expecting it to work, and were very surprised when it did! Btw DS's gut issues did sometimes slightly improve on their own and then worsen again, which we at the time thought might be down to diet, but looking back we wonder if we were just reading too much into it, thinking we 'knew' what the issue was...

emmylou - you sound very well-informed. Are you a medical practitioner? I know that anti-b's would not help with coeliacs, my point was that it may be worth a shot if the issue isn't coeliacs, and before hp has to go down the worry of the GA route...

I think your advice is fab though

Just to add my tuppence worth.

i am a coeliac, undiagnosed for years and was very ill for about 4 years.

The test wasn't pleasant but was short and soon forgotten. But the difference in my health was well worth it, I would not want any one to go through the ME style symptoms I used to have. (plus the free prescription foods he'll be entitled to)

good luck in whatever you decide to do.

PS I am also allergic to wheat and reacted to hte gluten free wheat products.

My DS had the Anti-B's 5 times as he got worse after we came back from a holiday in Cuba so the doc's thought it was a bug - whilst he was on the anti-b's he got better but 4 weeks later was back to square 1. They didn't think coeliac because he is tall and looks healthy - they only did a biopsy because they didn't want to put him back on the tablets again.

The day after his GA was the first day back at school after the summer hols - I phoned the school and we decided to send him in with the proviso they would ring if any problems - he was fine - it was as if nothing had happened.

Hi HappyPiglet
In case you are still wondering about the biopsy, what happens is this:

Your DS will be given a GA to send him to sleep and so he will remember nothing about the procedure.
A tube will be passed down his oesophagus to clip tiny samples from the lining of his gut. They should take several samples from different areas. These will then be examined in a lab to see if there are signs of damage to the villi in the gut. The damage caused by an abnormal reaction to gluten is characteristic and should be easy to spot. You will then get a report saying whether the samples showed damage or not. The damage heals as long as no more gluten is ingested.

Look here for details:
www.coeliac.org.uk/coeliac-disease/how-to-get-diagnosed

You really do need to know.

My DS who's 5 had a biopsy done in July. I was worried sick about it but he was gone from the ward for less than an hour and recovered from the anaesthetic very quickly because he was only under for around 10-15 minutes.

He's been gluten free for 2 months now and it's made a huge difference. He's putting on weight, has so much more energy and he's much much happier.

I hope you don't have to wait too long but it's best to know either way what you're dealing with. Good luck

Bit of an update and more advice needed!!
We saw the dietician on 1 Sept and she recommended a biospy. So I put DS2 back on gluten. All his symptoms are back. His weight has dropped from 25th to 9th percentile and height from 75th to 50th so she was a bit concerned. After waiting 2 weeks she finally wrote to my GP outling her recommendations and I went to see him on Sat.
GP is very anti doing the biospy as he wouldn't want to put a 5 year old through a GA (neither do I) or as he put it 'I wouldn't put my 5 year old thro it uneccessarily' which made me feel like the worst mother ever for even contemplating it (under dietician advice!).
Anyway he wants to repeat the blood test which I suppose makes sense as it is 14 months since it was done and found negative.
He has called the biochemist at our hosptial who believes the blood test is very sensitive and accurate but she is going to call Addenbrooks for further advice and then I need to wait until next week when my GP returns from holiday to see what Addenbrooks say. As he has only been back on gluten for 3 weeks I guess the delay doesn't matter that much.
I am totally confused now... in some ways I want the blood test to be positive so I know one way or the other but then who WANTS a positive ceoliac test for their child....
In terms of the blood test should he eat gluten so many hours or minutes before to get an accurate reading or does it not matter?... I am not sure how long what they are testing for stays in his system after he stops eating.
Anyway just feel better for putting all that down.

Just found this thread which makes interesting reading as I am kind of in the same situation

DD (2) is severely intolerant to dairy (lactose) soya, oats and possibly barley....

She poos a lot and I think she is worse if she has had bread, pasta or anything high in wheat iyswim.

She had the blood test over a yr ago which was negative (I have also ben told its only 20% reliable too) and we are awaiting next pead appt but gut biopsy has been mentioned

The only thing which makes me think maybe she does not have coeliacs is she has no weight issues and is actually quite a sturdy little thing (but not overweight)

happypiglet - I feel your pain I don't want DD to be coeliacs but it would be good to get answers...

I know simpson its mad isn't it... the not knowing is awful...its taken me 14 months to get no further than where we started with a windy bloated explosive pooey little boy who is stick thin (and now not getting taller fast enough)... I have seen 1 peadiatrician who just discharged me as an over worried mum and two different dieticians....and now I am back with my GP who admits he isn't an expert but clearly doesn't want to do a biopsy... I don't know where to go next really....

the first pead we saw when DD was a baby said there was nothing wrong with her

Luckily we have not seen him for ages now (am hoping he has moved on and we were discharged by a different pead in April and since then things have gone rapidly downhill so waiting to see another pead on 30th Sept.

but I am lucky I have a good GP and dietician.

Main reason for biospy being mentioned for DD is because her dad is Irish and its more common in Irish people apparently....

What is the next course of action for you then???

waiting for Addenbrooks to opine....and a further bloodtest I think..... but nothing until next week...