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Re: 6 year old coeliac

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Hi everyone

I have a mum coming to see me on Wed about her 6 year old daughter. Very little

info at this point. Been gluten and milk free for two years. Changed to soya

milk, was better for a while then worse (do not know what her main symptoms are)

and now on rice milk but still suffering. GP wants to put her on

immunospressant drugs and mum not happy. Can anyone point me to some good

sources to read up more either on coeliac/gluten and also on ensuring that as a

child she gets the correct nutrients into her body. Only very rarely do I

attract children to my practice!!

Many thanks.

Gail Farrow

East London

Tel: 07815 168410

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Hi Gail,

Coeliac UK are an excellent source of information.

See: http://www.coeliac.org.uk/

You need to find out if she has had a definitive diagnosis of coeliac disease as

confirmed by duodenal biopsies. If she has, it sounds like she may have

refractory coeliac disease (CD) - particularly if her symptoms are not resolving

and her doctor is considering immunosuppressants, in which case she should

definitely be under a gastroenterologist and specialist paediatric dietitian who

would help with maintaining/improving her nutritional status, check the diet

thoroughly for possible sources of gluten (e.g. from cross contamination) that

they may be unknowingly ingesting and address the milk/lactose/soya intolerance

issue. Paediatric nutrition is a specialist area and it may be better to refer

on if it is refractory CD?

Best wishes,

Charlotte

(Dietitian)

From: Lindens

Sent: Monday, November 24, 2008 10:03 AM

To: ukherbal-list

Subject: Re: 6 year old coeliac

I have a mum coming to see me on Wed about her 6 year old daughter. Very little

info at this point. Been gluten and milk free for two years. Changed to soya

milk, was better for a while then worse (do not know what her main symptoms are)

and now on rice milk but still suffering. GP wants to put her on immunospressant

drugs and mum not happy. Can anyone point me to some good sources to read up

more either on coeliac/gluten and also on ensuring that as a child she gets the

correct nutrients into her body. Only very rarely do I attract children to my

practice!!

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Thank you all for your replies. The talk with the mother last night was

exploratory. The daughter is on her third biopsy, hopefully, this time to rule

out for sure, refractory CD yet dietary changes have apparently meant that the

microvilli have grown back and bloods are coming back negative! She is under

the gasroenterlologist at Great Ormond Street and the mother says she has not

found advice from the paediatric dieticians of much use.

She is more concerned about the symptoms that developed first with cow's milk

(mild problems compared to the symptoms she feels have been caused by soya milk)

and then soya milk particularly diarrhoea. Her daughter is now using rice milk

quite happily but it is increasingly difficult to find foods that don't contain

any of these things. The worryis now the amount of sugar and lack of complex

carbs in her daughter's diet. She told me that besides this her daughter is

fit, well and bubbly but a very fussy eater.

She did not bring her daughter along and we have left it that she will decide

further about using herbal medicine once the biopsy results are back.

With thanks.

Gail Farrow

East London

Tel: 07815 168410

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