Advice needed on going wheat free - tmi!

[pigsinmud]

Quick history - when ds2 was 5 we put him on wheat free diet as he had stomach aches, constipation/diarrhoea.... This was on the recommendation of gp - all improved. Couple of years later we put him back on wheat and he was tested for coeliac disease - came back negative although allergy levels were raised, but hospital put that down to hay fever. I know you can have false negatives, but let it go. He has constant mouth ulcers too and frequent headaches.

Fast forward to present - ds2 had 4 bouts of diarrheoa in 3 months. He always has gurgling bloated stomach, so he decided to go wheat free again - my heart sinks as we are veggie and he is a fussy eater. First day wheat free was yesterday.

Now, dh has chronic diarrhoea - he goes 3/4 times a day and it is never formed. He has frequent tummy aches and gurgling stomach. He decided to go wheat free to keep ds2 company. He has just texted me from work to say that he has done a normal formed poo! First one he can remember.

So,my question is - there is no point having him coeliac tested is there? We haven't cut out gluten, just wheat so far. If it was coeliac there is no advantage of an official diagnosis is there?

[pigsinmud]

Thanks. So far nothing changed for ds2, but we are both surprised at the effect it's had on dh. He thinks he's constipated as he only went once yesterday He now feels stupid that he let it go on for years without trying to change anything.

I'm not sure there is much point trying to get ds2 tested again. I don't think they'd even do it again - quite dismissive before and we had to wait months and months for the test. Consultant said he could just have an intolerance which of course wouldn't show up in a test.

[CMOTDibbler]

I'm amazed by those who get support and follow up! I was diagnosed as an adult, had one appt with a dietician who was useless (recommended rice krispies for instance), and that was it. I've just got on with it for the last 15 years

[Charmingbaker]

A diagnosis would mean support from a dietician and gastro consultant. Once diagnosed it means initially checking bloods every 6 months until at normal level, then yearly there after. As well as checking for antibodies, they also check vitamin levels. It is possible for small amounts of gluten to be getting into the system and cause damage without any obvious signs. Whilst your DS is young it is very easy to control what he is eating, but as they get older this isn't the case. I have 2 DCs with coeliac, DS1 is 15 and does accidentally get gluttened from time to time. Personally I think the support he gets is very useful. His dietician talks to him about how to cope out and about with friends and he listens to her far more than me (the nagging mum). By getting his bloods checked we can monitor if gluten is creeping into his system and we can give him vitamin supplements when necessary. I also know that when he is a student he will have access to free GF staple foods when managing on a student income (and can't spend his prescription on GF beer). It also means he will have access to any future medical advancements - there is talk of a future vaccine.
However, I can also appreciate how difficult it would be to put my children back on gluten for 6 weeks in order to try for diagnosis, partucularly after a negative test.
For me, i am pleased my DCs have the official diagnosis and I do find the medical support helpful. It also means others have to take their condition seriously. It's not just a fad or a fussy parent.

[notapizzaeater]

The official diagonisis would mean help from a dietician and bone scans as you get older. You also would get some food on prescription.

[pigsinmud]

Thanks. I was a bit shocked with dh that one day made such a difference. He would have no problem eating meat, but I'm not sure ds2 could actually bring himself to eat it. I did say to him last night that he is going to have to expand the range of foods he eats.

Dh's sister is always cutting food out of her diet - dairy, meat, ..... She has never cut out wheat, so perhaps we should tell her to give it a go. She has stomach problems too.

[CMOTDibbler]

For dh, then imo, no. I have a diagnosis, but it doesn't mean I get any followup etc.

If you are veggie by choice, then you might have to have a serious think about them eating some meat - it makes eating out gf much, much easier. And for a child with a restricted diet you need yo be vvv careful about balancing it.