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.

My LO was tall and thin (but hadn't grown for ages - but was still tall for his age) They kept fobbing me off and eventually did the biospy - I was dreading it but honestly it was quick and he cannot remember any of it - I asked for a sedative before the event as he is petrified of needles and he didn't even realise he had a needle. I was so scared of this but afterwards the relief in knowing was great - hated him being coealiac obv but as least we now know what we are dealing with.

sorry school run.... I know I had reconciled myself to the biopsy and now GP is very anti it.... argh

well Ds (5) has just had a grmmets op so I assume biospy will be the same as that.

Think it might be me asking for the sedative

DS was fine btw its just not easy seeing your Dc knocked out

Happypiglet - am seeing our pead on 30th sept am happy to ask them any questions you might have

I had a negative celiac blood test. But, when I eat wheat etc, I get gaping sores in my mouth, horrible stomach aches, and am practically faint from iron deficiencies. (Sp? It's Monday people :)) Not to mention the pounding headaches from not absorbing magnesium...

When I avoid it, I don't have these issues. Simple enough for me! :)

Thanks simpson. I guess all I really want to know is could DS2 have had a negative blood test for ceoliac and still be a ceoliac? That is what is the likelihood of a false negative blood test in a (at that time) 3.10 year old...

will be asking the same question for DD anyway although she is a bit younger....

My ds was like this, unfortunately for me I put him on a gluten free diet so that when the tests came round we had reintroduce gluten wheat etc and they came back negative that was the biposy as well.

However, because as someone else mentioned the changes were amazing in ds who was at the time 15 months, he learned to walk etc as he was no longer in pain, he is still on a wheat,gluten and now milk free diet at the age of 4.3.

Although I dont have the diagnosis of coeliac we are very strict and it works, for me it was just about getting my boy bk.

HairyMaclary - I had exacty the same experience. Negative tests but a life changing decison to go gluten free and lactose free after the I had the tests.

I felt so much better that I am never going back to lactose and gluten again.

We "needed" the official diag. to get the help/regonised at school it also means you can get free prescriptions for the GF food (though I only get them for pizza bases which he takes to school for cook to prepare - if they use any of your own stuff it has to be prescribed as opposed to bought )

Its so hard - you are caught between the devil and the sea

do you not get bread on prescription then??

I cook my own in a bread maker. I cook gluten free cakes and biscuits too and keep them in the fridge.

The shop bought GF bread sometmes just does not taste nice. More like polystyrene ceiling tiles really.

Exactly nota I want to know for sure... so if we go to a birthday party I know whether he can eat a bit of gluten containing birthday cake without it being the end of the world or not...
I have done GF at home and it was easy it was the going out that was a bit more difficult...

beenbeta - I agree the shop bought stuff is horrid - best advice I was given was not to give him any bread for months so he "forgets" what it "should" taste like. He likes the pitta breads so I make these into pizzas for him at home - luckily for me he is a meat and veg guy so not too bad. Was delighted when I cracked yorkshire puddings for him. If we go to a party I take a goody bag full of foods.

not looking forward to halloween though - will have a big bag of choc to swop out the contraband sweets. He knows if he eats gluten his tummy hurts so he himself is really careful and asks whoever is giving him stuff if he can have it

The gluten free pasta is very nice - I cook completly GF at home now - I make a lot of novelty cakes so make those when J is at school/bed to reduce the risk.

happypiglet - my DD saw her pead today who has set up another blood test for coeliacs for tomorrow.

She is also having various skin prick tests...

I also have to drop off 2 stool samples to hosp tomorrow

if everything comes back negative we are being referred to chelsea & westminster hosp for a gut biopsy..