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reintroducing gluten

(7 Posts)
bethylou Fri 02-Sep-11 23:01:46

I've asked for your input here before and have found your advice very helpful so I'm back with a few more questions.

A litle background: DS1 is 3.5yrs and has been gluten-free since November last year and then dairy-free as well since April this year (due to weight loss, anaemia, no solid stools for months at a time, tummy aches etc..). His consultant now wants us to reintroduce gluten so that we can do the Coeliac screen again. It came back negative last year (when still on gluten) but he says children often get a false negative result.

If we (DS1) have symptoms, the consultant wants the blood test done and says he will then do a biopsy anyway, whether it is positive or negative, to see if they can find out what is going on. Obviously we hope that he will be symptom-free...

My questions:
1. Do we reintroduce gluten gradually or from day 1 give him the required amount? (I've been told 4 slices of bread a day? The consultant is on holiday).

2. My hunch is that he has an intolerance not an allergy. Would you put your LO through a biopsy in such circumstances if the blood test is negative? After all, he's symptom-free when on the gluten and dairy-free diet (which I know we want to get him off if we can).

3. The consultant intends to have the blood test done first, then book a biopsy at BCH (which I think will take quite a while). Assuming that we go for this, can we not just go straight for the biopsy and have the bloods done while he is under anaesthetic (if the biopsy will be done no matter what the outcome)? Assuming that we are having symptoms, it seems silly to me to have to keep him on gluten longer than is necessary just to go through the diagnostic hoops.

Any experiences/advice gratefully received. Will try and check back tomorrow to see if any of you can help me get my thoughts straight. Thanks for reading ...

wellymelly Sat 03-Sep-11 00:52:56

Have a friend with severe life threatening allergies - started her own website called Whatallergy.co.uk (or.com/org ?try both) - she is very active in creating a forum for communication - try it out and I am sure she will be able to advise you based on her personal experience.

bethylou Sat 03-Sep-11 09:05:13

Thanks. I will have a look later.

SoupDragon Sat 03-Sep-11 11:33:15

I think he has to be back on the gluten for a while in order for the biopsy to show damage to the gut as it will have healed whilst he was off gluten.

A friend decided against the biopsy for this very reason - her child's symptoms were so debilitating on even small amounts of gluten that being back on it for the required amount of time would have been intolerable.

freefrommum Sat 03-Sep-11 13:25:08

The biopsy is to diagnose coeliac disease (often called gluten intolerance or allergy but in fact it's neither of those, it's an autoimmune disease). Currently in the UK it is considered the 'gold standard' for diagnosis and the only way (I believe) to officially get 'coeliac' put on a person's medical notes and then receive gluten free food on prescription. My 9 yr old DD was diagnosed earlier this year and yes, waiting for the biopsy for nearly 6 weeks and having to make her continue to eat gluten when we were 95% certain from the blood tests (false negatives are common but false positives are not) that she was coeliac was bloody awful. However, as soon as the biopsy was done she was allowed to go gluten free and at least now we are 100% certain that for the rest of her life she must remain gluten free (no more wondering or retesting) and we get food on prescription, regular check ups with the dietician etc. Have a look at the Coeliac UK website www.coeliac.org.uk - there's lots of useful info and advice on there. The recommendation is that a person eats gluten more than once a day for 6 weeks before the biopsy in order for the test to be accurate. Difficult decision I know. Good luck with whatever you decide.

Bumply Sat 03-Sep-11 19:21:27

members2.boardhost.com/glutenfree/ is another useful site if you want to get feedback from other parents/coeliac sufferers who have been through a trial.

Ds2 was lucky in that his first blood test was positive and we were advised not to go gluten free until he'd had his biopsy.

He gets annual checkups and dietary advice

bethylou Sun 04-Sep-11 22:57:32

Thanks. I knew you'd all be able to help me. Also hoping to speak to my trusty gp this week to gauge his opinion. My hunch is that was dairy causing the problems more than the gluten.

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