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coeliac disease diagnosed, gone gluten free but still suffering severe stomach pain - advice and ideas needed

10 replies

tkband3 · 16/04/2009 14:17

DT1 (4) was diagnosed with coeliac disease 2 months ago (DD1 was diagnosed 3 years ago, DT2 diagnosed after DT1). Neither of the DTs had an endoscopy as the consultant agreed that it was unnecessary to put them through the procedure complete with general anaesthetic given our family history.

Since diagnosis and going gluten free 2 months ago, DT1 has been suffering increasingly bad stomach pain. She has had antibiotics for a chest infection, which cleared up but the tummy pain remained. It was so bad one afternoon we ended up at A&E only to be told by the triage doctor that it was acid indigestion brought on by the remains of the inflammation from the coeliac disease and we were told to give her infant gaviscon. This didn't work, so we went back to the GP and got Ranitidine, which has seemed to help a little. It's clear that she sometimes uses the tummy pain as a diversionary tactic when faced with something she'd rather not do, but at other times, she's crying with pain so it's obviously real.

On the basis that you take infants with reflux to a cranial osteopath, I took her to my osteo last week and then again today after she suffered really badly yesterday. He had a few thoughts - that it could be fructose intolerance, dairy/lactose intolerance or helicobacter Pylori (type of ulcer caused by stomach bacteria).

Does anyone have any experience of any of these? Or any alternative ideas?

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Peachy · 16/04/2009 14:21

Hmmm

I have a Df CF (casein, milk protein) free child and would say- only if you absolutely have to.

I'dgo the GP route and ask for endoscopy. Purely because my BIL is facing an ileostomy after his ulcerative colitis was dx'd so late after several dx errors it is far too severe for any other treatment and could even rupture whilst waiting; he's 30.

Peachy · 16/04/2009 14:21

GF CF

sorry

bumpybecky · 16/04/2009 14:23

poor thing

you probably know this already, but are you avoiding non-food sources of gluten? I've a extended family member who can't use children's paint and also some glues. I think it's because flour / gluten is often used as a base. Even little splashes onto the skin causes her problems.

Apart from that, maybe it's worth starting a food diary to see if you can link symptoms to what she's eating.

Hope you work out what's causing it soon

tkband3 · 16/04/2009 14:27

Sorry Peachy, do you mean only go lactose/fructose free if we have to?

Have left a message for consultant to call with a view to asking for endoscopy after all.

for your BIL - it's shocking how little some GPs know about these conditions. My SIL's severe endometriosis was mis-dx'd as IBS for so long that she ended up with a full hysterectomy at 34.

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tkband3 · 16/04/2009 14:29

Thanks bumpybecky. Her school has been great and has sourced suppliers of gf flour and pasta etc so they can make gf playdough and use gf pasta in activities. And they give the DTs separate stuff when cooking so there's no cross-contamination.

Think you're right about the food diary. Will start today.

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Peachy · 16/04/2009 14:33

I've no knowledge of fructise to be fair (but tried salycylates- eeeek) but going casein free really does limit foodstuff choice alongside gluten free.

I'd personally go for the endoscopy; might be worth a trial of DF because with me and my casein intol, it takes only a day to know if it is helping.

Willadmit to being very pro endoscopy atm as sisters MILtalking BIL out of the op atm so her chances of it rupturing and widowhood are quite high but obv that ouldnt relate to your DT's, BIL had 30 yeras of errors and a few of steroids to come to this

Doodle2U · 16/04/2009 14:36

My eldest brother is dx coeliac and one of the things he noticed was food combinations brought on bad 'attacks'.

Sausages followed by a glass of Ribena, for example.

It might be worth experimenting with food combo's and working out what reacts with what.

tkband3 · 16/04/2009 14:38

Apologies for ignorance - what is casein? But definitely think you are right re endoscopy. DH's bro is dairy allergic, and his son is also coeliac, so may well consider DF, but will start a food diary first.

Am being chucked off by DT1 now - she wants to go on Cbeebies .

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Peachy · 16/04/2009 14:42

Casein is milk proteins- so not lactose basically. Easy to find which is which with a dairy concern; dirnk apint of lactose free milk,trust me you'll know (having amde that mistake- not recommending BTW!)

tkband3 · 16/04/2009 15:39

Doodle - that's v. interesting. Will look out for that when I do the diary.

Thanks for all the help.

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