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Advice needed from Coeliac or NCGS parents please!

(9 Posts)
SerialGoogler Tue 24-May-16 10:01:19

A rather long story summarised as follows:

1. DS1 (5) has never really had a solid poo. Accepted it for a long time until around 4 when I realised it wasn't getting better, poss worse, and he couldn't take care of himself.
2. Paediatrician did Coeliac test and we discovered he was IgA def.
3. Referred to Gastro who did the IgG version of the Ttg and said all was normal.
4. At that appointment she said if negative I could take him off gluten (previous trial of 3 weeks told me what I knew - that gluten was culprit) but it wouldn't be necessary.
5. I chased the consultant after last set of negative results to say 'what now?' as I couldn't stand to continue as we were (nightmare at other people's houses or public loos, smell and mess left horrendous and small fortune on toddler wipes and toilet duck pad, lots of accidents at school as he wouldn't 'get a warning' etc)
6. She said we could go gluten free ahead of our review appt in 3 months.
7. We have done so and everything is so much better. A few mistakes here and there from me and school but think we're getting there.

So my questions are - is this it now? Is there any other recourse or experience that means I should push for more investigation or should I accept it as 'one of those things'?
If I do just accept it how can I sustain spending around £10 a week on GF bread? DS1 is a very fussy eater so having to replace pizza, fish fingers, endless bread, breaded chicken etc. DS2 is eating the same bread as both simpler and so as not to tempt DS1 who will most definitely notice!
I guess I wish I had a diagnosis of something so that I can show it to school and not sound like a faddy mum when I hover near him with GF alternatives at parties. And so I feel less guilty when I say he can't have all the things he asks for.
Would love to hear your experiences, thanks!

SerialGoogler Tue 24-May-16 14:28:08


RainbowsAndUnicorns5 Tue 24-May-16 14:35:39

Very similar experience, happy to say he is now a tall, strong, happy 12 year old so & going gluten free has been amazing for him
Has he had a biopsy & been diagnosed coeliac? It varies area to area but we get bread & flour on prescription.
I buy pasta but that's about it. Most things are gf anyway. Once food stops 'hurting his tummy you'll probably find he enjoys food much more & will be less fussy. Ds would now happily eat a plate of broccoli which when he was 5 he wouldn't touch!

RainbowsAndUnicorns5 Tue 24-May-16 14:36:49

Have you joined coeliac uk? There's a small yearly fee but it's a fab charity & loads of help. They publish a book which lists lots of things you can get from the main supermarkets

RainbowsAndUnicorns5 Tue 24-May-16 14:40:19

Oh sorry just seen not diagnosed

Hmm I think if you know it's making him better carry on. If costs too much cut down on bread? As I said we get it on prescription (well rolls, hehatesthe bread!)
But he sometimes doesn't have any for s few weeks, pancakes for breakfast, trice or pasta salad for lunch & chicken , fish jacket potato type thing for tea
He eats birds eye waffles & baked beans for snacks
Seabrook crisps

SerialGoogler Tue 24-May-16 15:14:18

Thanks Rainbow, he won't eat rice, pasta, vegetables, fruit, jacket potatoes (only chips) only processed meat and no baked beans. Nightmare! I should remember Birdseye Waffles though - he is prepared to eat those...

I did email CUK and they pointed out that it is unlikely he has Coeliac but of course the only gold standard is biopsy. But then currently there isn't enough of an indication to warrant one.

And if it isn't coeliac what is it? I can't believe it is a quirk of his digestive system. Perhaps I just have to be patient and quiz the gastro when we go back. So please your son is healthy and well.

RainbowsAndUnicorns5 Tue 24-May-16 15:22:26

I would cut out the processed meat immediately, in someone with irritated bowels that's not going to help

Oh dear that's very limited so tricky for you sorry flowers will he eat home made chips/wedges if he helps you?

It could be a gluten sensitivity or ibs
I have heard of the Ig tests coming back wrong...and things change over time and he may need to be retested, but results won't be true if now on gf diet

Laselva Wed 25-May-16 17:51:03

How does he react if he does consume gluten?
Once gluten free Coeliacs tend to react quite quickly to even tiny amounts of gluten.
If he is reacting to gluten the choice you have to make is wether to push for diagnosis or not.
This would most likely mean putting your DS back on gluten for 6 weeks prior to testing again. Not an easy decision.
One thing you could do is ask for the coeliac gene test. If positive it would not confirm coeliac, (it only confirms you have the gene) but if negative you could rule out coeliac.
It is possible for your GP to prescribe GF food without a diagnosis, so you could push for this to help with the cost.
With regards to his limited diet I would give it time. It takes up to 2 years for the gut to fully heal when coeliacs go GF. Both my DSs are diagnosed and it took them a year to fully recover. DS2 is 5 and can be very wary of food. We have to remember food has made our children ill, so it is only natural they are reluctant to try new things.
My DS only eats a few fruit and veg and we have just started a star chart to encourage him to eat 5 portions a day. At the moment were having 2 weeks of things we know he likes (broccoli, carrots, pear and mango) then we're going to add a new thing to try each week.

peripateticparents Wed 25-May-16 21:51:19

Serial, I really should be doing something else <looks up procrastination in the dictionary> ... but just briefly, if you find that you're not fitting the celiac criteria, it could be a wheat allergy. Some of the other 'gluten' foods have a similar protein so could also be causing a reaction.

We had to cut out wheat because of a non IgE allergy (with different reactions), but we have other foods that cause us incontinence, tummy pain etc. TBH, the gold standard for allergy testing is food diarying, so if you go down that path, be prepared to do that before you see the specialist as it will save a lot of time/anguish if you go in prepared!
Best of luck.

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