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Coeliac test negative, but cutting out wheat/gluten has reduced symptoms!

45 replies

pawsnclaws · 02/01/2011 19:54

I'd really appreciate any advice on ds2 (6)'s situation.

For the past three years he's suffered pain on eating, a horrendously swollen stomach, and constant diarrhoea. He tends to need the toilet urgently after eating, and when he goes it's pretty foul - loads of explosive wind and splattering of the toilet.

Three years ago he was tested for coeliac disease - came back negative. The consultant we saw diagnosed toddler diarrhoea and told us to reduce his fibre and prescribed immodium. This made no difference. I asked about allergies eg a wheat allergy and the consultant pretty much laughed in my face.

We saw the same consultant a year later, and he diagnosed constipation with overflow, and told us to increase his fibre and prescribed movicol! He also did a second coeliac disease blood test - again negative. Movicol made no difference - ds was still going to the toilet at least three times a day, and still suffering with stomach pain after eating.

In sheer desperation, a month ago I cut all wheat/gluten from his diet. Not only was it easy, but within three days he was producing a normal, solid poo once a day. No pain on eating.

So where do we go from here? My feeling is that he has some form of allergy, as the difference is so quick. The other thing we've noticed is that his constant runny nose has stopped.

On the one hand I'm delighted that three years of soiled pants and pain has ended. BUT we've cut a major element from his diet. Do we just carry on, or do we need to see his GP about this?

Sorry for the length of post BTW!

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nightcat · 02/01/2011 22:22

hi Smallstuff, there is not much in a way of vit/minerals in all those dry long-shelf life carbs, also most of sweet substitutes have glucose syrup in them which is not that healthy, something about the way it's meatbolised.

When we first stopped gluten I thought I was going to be desperate for prescriptions etc, but then I realised he wouldn't be getting much vits/minerals if we carried on with bread/pasta/pizza/ravioli... like we used to. We never got as far as getting presricption stuff in the end. One of the problems with gluten is malabsorption, well, to correct that you need wholesome fresh foods.

When my ds stopped being desperate for former gluten-like foods, he then went off cardbord-y bread (was v. windy when we tried genius), from then on we go without as much as poss.
Now we would have ricecakes for sandwiches when totally stuck or travelling, no breakfast cereals at all (cooked breakfast mainly). I do get rice pasta and occasional biscuit/cake, but recently even tried baking.
Thing to test for are minerals like Zn and B vits, people get paranoid about iron, but my ds was low borderline in iron and severely deficient in Zn 2 years into diet, so not all deficiencies fix themselves straightaway even with decent nutrition.

pawsnclaws · 02/01/2011 22:25

So interesting to hear these stories, at the moment we're trying to give him foods that are naturally free of wheat or gluten rather than substitutes - funny enough he has refused to eat bread or pasta for ages anyway due to discomfort. I tried the gf bread myself and while it wasn't awful it barely seemed worth the bother. Luckily he likes plain food so sauces and breadcrumbs (like you get in processed foods) haven't been an issue so far.

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alfabetty · 02/01/2011 22:31

We too have found we've reduced our wheat intake as a result of DS's diet - so rather than toast for breakfast we'll have boiled eggs with one slice of bread, jackets pots for lunch rather than sandwiches, and while we eat pasta quite often, we have smaller portions and more sauce.

I was always sceptical of the anti-wheat/carbs fad, but I think there is something to be said for varying diet away from a bread and wheat base.

And avoiding processed foods reduces sugar and salt intake too, so overall it is a pretty healthy way to eat and makes one much more conscious of what's in packet foods and the content of a meal.

Smallstuff · 02/01/2011 22:34

Thanks.. I do use Genius bread as its the only one he will eat... He does have toast every day and porridge... Not sure I could hack cooking anything else first thing but I could sub toast with yoghurt...
I do use GF pasta and he eats rice and potato a lot too.
I let him have GF treats (shop bought cakes and biscuits) but haven't looked at the glucose syrup thing didn't know it was bad...
I intend to bake more myself but haven't got round to it yet. I tried a loaf before Xmas that he wouldn't eat and I did GF yorkshire yesterday which went OK. Next its cakes and biscuits etc.. Dietician says I need to fatten him up!!!

notapizzaeater · 02/01/2011 22:43

GF Yorkshires are the best - much better than normal. 4 eggs, 90g cornflour, milk as normal. mix (no need to stand) and bake as normal ..... Allow lots of room as these rise !!!

Have lots of recipes if you need them - DS will not eat the bread at all so I bake just about everything from scratch !

Smallstuff · 02/01/2011 23:00

Gosh yes recipes please!!! Need to make pastry tomorrow....was just going to use Doves GF White flour and my normal fat (stork) would you change anything else?
What GF flours do you rate?
Do you know if you can get GF stock cubes?

notapizzaeater · 02/01/2011 23:15

I use Doves flour from most supermarkets. Not had much luck with pastry as its quite hard to master. Some people roll it out under cling film as it can be quite sticky.

Anthony W Thompsons /Kaella (sp) / Most Knorr are GF. Bisto Best gravy is OK

Wellfoods flour is quite good too, once diag. you can get flour on prescription but we don't bother.

I have used the Dietary special frozen pastry in the past and that has been OK. We don't tend to have "pie" now - I top things with mash or make a savoury crumble/GF breadcrumbs

M & S do a frozen GF stuffing that we all like (was the one thing DS missed - oh and greggs Sausage rolls/Steak bakes but not found a replacement there yet Grin ) Be careful when out if you have Coke - real coke/Pepsi is GF but for example Tesco coke isn't.

notapizzaeater · 02/01/2011 23:17

Oh and sign up to Warburtons - they are about to launch GF bread/Teacakes and other stuff - if it tastes OK we are going totally GF in the house to make it easier with no cross contamination. Nightmare keeping 2 tubs of butter in fridge and checking which one, scrutanising the jam etc ...

notapizzaeater · 02/01/2011 23:21

And this web site was a god send when first diag. I asked loads of questions. It also has links with recipes and local places to eat out etc .. members2.boardhost.com/glutenfree/index.html

If we are out and need food we tend to go to McD's (dons hat) and have a big mac (always ask for no bun), fries & drink - the BBQ/ketchup is ok there as well.

Smallstuff · 03/01/2011 08:41

Thanks so much.....will have a look at all that

nightcat · 03/01/2011 12:30

wow, GF yorkshire pud recipe, never made one in my life Blush, must try, thank you not a pizzaeater!

HaveAHappyNewJung · 03/01/2011 13:55

Gluten free Yorkshire puds are fab at least DH's ones anyway!

And pancakes. They are better than normal ones IMO!

nightcat · 03/01/2011 14:08

yes, I make pancakes, I also whizz up ground seeds, nuts and fruit in the butter

nightcat · 03/01/2011 14:08

batter i meant

noddyholder · 03/01/2011 14:14

I have suspected i was coeliac for yeras.After a really bad episode with the rash and everything in August i went gluten free.For 3 weeks I felt dreadful like withdrawal but then I started to feel amazing.I had a colonoscopy in November which showed nothing and I wasn't offered any gluten testing as the doctor i saw said I wasn't there for that!(I was refered for something else).One of the nurses there suggested I re start gluten and then ask GP to test.I was so fed up of the whole thing that i bought a test in Boots which was positive and i have decided to just cut it out again myself as the medica rote was so long winded!

noddyholder · 03/01/2011 14:15

medical route sorry old laptop!

pawsnclaws · 03/01/2011 16:47

Am giving the yorkshires a try tonight with roast chicken .... all the ds love yorkshires so anything that could make them work would be great.

noddyholder what a daft situation, but I can completely understand why you wouldn't wish to start gluten again. Unfortunately it does seem that many people have to continue to make themselves ill in order to get a diagnosis. I really don't feel I could put ds2 on gluten/wheat now considering the difference it's made to him.

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notapizzaeater · 03/01/2011 23:01

pawsnclaws - did you enjoy the yorkshires ? Same mix for pancakes too

Tis a nightmare - I was convinced I knew it was gluten but the doctors told me I was wrong and I got in touch with coeliac UK and they told me not to take DS off it so I didn't - even though I hated doing it ....

pawsnclaws · 04/01/2011 10:01

Yes the yorkshires were surprisingly good, even ds1 (who hasn't got a problem with wheat but is very fussy) enjoyed them. Thanks everyone for all the brilliant advice.

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maccasmum · 15/02/2011 16:12

Please continue with your quest to get your child diagnosed, blood tests are only accurate in 60-70 % of cases the gold standard of diagnosis is to have a gastroscopy I have a husband and son with coeliacs who both had negative blood tests but were confirmed with it after gastroscopy

www.coeliac.org.uk/healthcare-professionals/paediatrics/diagnosis-of-children .

You need the diagnosis because of the long term health issues that having coeliacs brings

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