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Autoimmune disease

Help and advice (Crohn’s / gastritis / failure to thrive)

8 replies

T123bram · 13/01/2019 01:40

Hi everyone

My son has the symptoms of Crohn’s disease (we are told) but recently had a test and this showed negative. He is now getting so thin and weak - he has severe gastritis. He is not growing either and is extremely small for his age. We see a specialist but every six months.

We have spent five years hoping the next tablet or approach would help him but it hasn’t. I feel that we get little support as a family and although we are a strong unit the pressure is starting to show. It affects every day life because he gets too cold to swim, mealtimes are a strain because he can’t eat enough to help himself get strong, etc..

He has seen dieticians but can’t follow their advice as often the food supplements make him vomit.

He will start secondary school in September and I am worried about this.

I have looked for any organisation that would be able to provide support to our family but cannot find any. Because he is not yet diagnosed we seem to be in a limbo land.

I’m not sure anyone would be able to offer us any advice of where to turn but thought I would post on the off chance.

Thank you for reading.

OP posts:
Blondie1984 · 13/01/2019 01:50

I would highly recommend getting in touch with this lady - she specialises in people with chronic illnesses and, more specifically, a member of her family suffers with serious gastro issues so might be able to give you some great advice - or at least point you in the direction of somewhere to go

Blondie1984 · 13/01/2019 01:51

This lady might be another one to look at

T123bram · 13/01/2019 02:06

Thanks I will give those a try.

OP posts:
justilou1 · 13/01/2019 02:48

It’s not coeliac disease or a metabolic disorder? Poor kid!!!! Have other food allergies been ruled out? (I’m sure you’ve been there.... we are the nightmare food allergy family, that’s why I’m asking. I have coeliac disease and my son has anaphylaxis - both daughters have issues with lactose and the eldest is allergic to kiwi and banana... sigh!)

T123bram · 13/01/2019 14:31

Hi yes they have tested for allergies and coeliac. He has a lot of mast cells in his stomach which could indicate allergies but they can’t find anything. We’ve tried cutting our dairy and wheat in the past (extremely hard because he is a picky eater anyway - caused by the years of illness) and this didn’t help unfortunately.

OP posts:
justilou1 · 14/01/2019 00:14

Assumed you’d be all over it. It’s so hard when they’re picky eaters, isn’t it??? I assume he understands that he isn’t well at his age, and resents feeling awful, etc.... poor guy. Makes me feel lucky that we at least know our allergies. I hope you get on top of it. Seems odd that meal replacements make him ill. Has he had Ensure? It’s supposed to be allergen-free. (Prescription only in Australia, and May have another name in UK) could be the volume making him ill. May need to be worked up to.

T123bram · 17/01/2019 21:56

Thanks - I think with things like the supplements it’s a mental block. He can try them and say they taste ok but once he knows he has to have it then he struggles. im not sure we’ve tried Ensure but what he’s trying to drink at the moment is allergen free. Thanks for your advice!

OP posts:
SoCockneyItHurts · 17/01/2019 21:59

What test for Crohn's did he have? X

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