ADVICE NEEDED ON BIOPSY

[eveimatildasmum]

Please can I have some opinons. Would you give your 2 yr old DD (who has ben well controlled on gluten free diet and was diagnosed by blood test and clinical signs) glutn for a month so that thy can do a biopsy, to prove something they already know? I have refused becasu she will becoem so unwell. Any one had experince of this or giv any advice. Thank you

[clerkKent]

Absolutely not. An unnecessary medical procedure for a 2 yr old is out of the question, and on top of that to have to eat food your body objects to for a month - no.

I have had the biopsy twice (once for diagnosis, once to prove I was recovering) and found it quite unpleasant. We are very hesitant about DS (age 12) having the biopsy despite coeliac symptoms.

[MammyM]

If biopsy is not necessary then don't risk the anaesthetic.

[DettaJnr]

Would there be another reason for doing the biopsy? They do explore a little as well as doing the biopsy and may be they need to check that all is well.

However, if it was me I would have a good talk with the doctors before doing the procedure to ascertain exactly why they need to veryify what the blood test and clinical signs have already concluded.

[Dottydot]

I think that's really tricky - I was very very reluctant to have my biopsy, as my blood tests had already proved beyond doubt I had Coeliac, but I know they use the biopsy to check there's no real damage, so in the end I agreed to have it - and found it absolutely fine.

I'm getting my 2 year old ds checked out - blood test - soon and if that comes back positive as well, I've been debating about whether we'd allow a biopsy to be done. I think we probably would, as I'd want to know that he was OK - in terms of 'only' having Coeliac.

I take your point about having to load them up with gluten for a month beforehand though - seems very unfair to make them poorly. With me (and possibly ds) the only symptom is anaemia, so it's not so bad.

Difficult decision but I think in the end I'd want the reassurance a biopsy would bring.

[eveimatildasmum]

Thanks for those comments, dont know what to do, I have talked with the docs and they keep coming out with excuse about chcking no other damage, however my argument is that she doesnt need to have an inflammed intestinal lining to have a biopsy to chack there are no other problems. I have been trying to research it and it seems there is no consens - howevr imagine if there was something else wrong. She does still have erratic bowels but not unwell with it and gaining weight. Descion day is Dec 6th. I just dont want to be branded an argumentive awkward parent!

[Dottydot]

You're perfectly entitled to be a concerned parent who is exploring all the options - don't let them railroad you into anything. You could always leave it a year or two - although my worry (personally - thinking about my own 2 year old ds) would be that they remember more the older they get. I think it comes down to the "what if" - i.e. what if something else was wrong - I'd want to know. But the liklihood is nothing else will be wrong and the biopsy will have been just to confirm the coeliac.

[ChicPea]

When I had suspected coeliac disease and I read from the coeliac society's info that a 2 week gluten diet was necessary before the blood test and biopsy I decided there was no way I was going to go back to gluten as I had suffered from the age of 15 to 27 and then to stop for a month and to feel energy again and not have the anaemia and digestive problems, even one slice of toast would have made me ill and I refused. The gut will repair itself, it can take up to a year if severe but it does completely recover. The advantage of having it medically diagnosed is free bread, flour etc but would opt for a 2 week gluten diet and the blood test only if you are really serious. Good luck.

[DettaJnr]

I have a brother and sister with coeliac and they take Aloe Vera juice from Forever Living. They both find that this sooths their stomachs, so to speak. It is expensive but neither of them need to take any antispasmodics or medication. My sister went down to 6stone before she realised what it was that was making her loose so much weight.

I agree with you that it seems madness to put your daughter on a gluten laden diet for a month just to prove a point. Surely it would be better to see what the bowel is like on the gluten free diet?

[catesmum]

We were under the impression that in small children most gastro-paeds were happy with a positive blood test result and don't go through with the biopsy.

If you do go ahead, then it's not too bad. With an endoscopy your child will only have a light sedation and it lasts about 20 minutes and you can stay with them the whole time. Our dd2 had an endoscopy and colonoscopy at the same time and was heavily sedated. It still only lasted less than an hour, and we were only in hospital for 48 hours. She was just 20 months at the time, but the size of a nine month old - so pretty tiny

[eveimatildasmum]

We already get gluten free products becuase her bloods and clinical revocery post gluten was so conclusive. Its not the procedure its the month of gluten - she was so sick for 4 months before anyone diagnosed, I guess I feel guilty as well -I am a nure and didnt even consider coeliacs!
This arguement has been going on for a year and we have recently moved to Edinburgh so are meeting her new gastro pead, the GP had raised the issue and suggested we start re considering. I have only recently joined mumsnet - wish I had found you all last year!

[clerkKent]

ChicPea - it is not always true that the gut repairs itself. My brother had severe damage and will have to have B12 injections for the rest of his life as his gut cannot absorb it naturally, and he cannot eat wheat even if gluten-free (e.g. Juvela Fresh makes him ill).

(It may not be B12 - I am very hazy about that sort of thing - but it is irreparable damage to the gut caused by coeliac disease)

[Dottydot]

yes, I've read that some adults diagnosed with coeliacs who are anaemic won't necessarily go on to be able to absorb iron and vitamin B12, even when they go gluten-free. (if that happens to me I'm back on the jaffa cakes..!).

[Daisybump]

I was told when I had my biopsy that the blood test is only a screening test and shows whether there are gluten antibodies in the blood and that a biopsy was required for a positive diagnosis. I suppose the worry could be that it is not just coeliac. It's a difficult call to make, could you talk to your local coeliac group and see whether any oither parents there have had to make a simliar decision. Hope that you can work it out