Coeliac Disease

[MrsAlwaysRight]

I'm starting a new thread as didn't want to hijack the other one that's running at the moment. Apologies in advance for the length of it!

Background: DD 4yrs was suffering persistant diarrhoea on and off. Initially I thought it was a stomach bug as it coincided with her starting school full time and there were lots of bugs going around. She would have diarrhoea ranging from very watery to soft consistancy which would disintegrate in the toilet. Very windy and poo smells horrible. She started having the occasional accident which has never previously been an issue. Frequently complained of being tired and is easily upset. Never vomits, only occasionally has complained of a sore tummy. Has mentioned sore legs a few times but not recently. She is and always has been tall for her age and slim (recently had BMI measured at school and was on 30 something percentile).

After this going on for some time, I took her to GP and he advised that he thought it may well be food related rather than a stomach bug. A stool test came back negative for any bugs. He said that the most common foods that cause a problem are milk and wheat, but we weren't really given any advice as to the best course of action.

I didn't think it was milk so I cut down the amount of wheat she was eating and in less than 2 days her stomach was much better. Her stomach flares up when she has accidently eaten something like pasta. Within a few hours she gets very hot and clammy and will have diarrhoea but no vomiting. She may go to the toilet 6-7 times within a couple of hours and then it seems to settle down. She still mentions being tired a lot but less than when she was eating large quantities of wheat.

Dr said she should have a blood test and advised us to increase DD's wheat intake for a week prior to the test. Test came back negative for coeliac disease. Dr then said her colleagues advised her that 1 week of increasing wheat intake wasn't long enough to get a positive test. So she was referred to a gastroenterologist who we saw this week. All along I didn't think that gluten was the issue and that it was specific to wheat as she eats porridge most days without a problem but Consultant advised that some people who are coeliac can tolerate oats. So we have been advised to give her wheat for the next 6 weeks then to have another blood test. DD is really upset about having to eat wheat again as she doesn't want to be ill, I've tried to explain why she has to but not easy with a 4 year old.

Anyway I was wondering if anyone has any thoughts on whether they think her symptoms point to Coeliac or just an issue with wheat as I first thought?

TIA

Hi, DD 1 has coeliac disease, at first we had tried reducing her dairy intake and that really helped her bowel symptoms but only cos her poor gut just was not coping.

Please follow the advice of the specialist - if it IS coeliac disease then she has it for life and the sooner you get a dx the better, because it is a risk factor assocaited with all sorts of nasty things later in life. Of course it may not be that, but eliminating one possibility is still good!

Dr is right that very many coeliacs tolerate oats , though DD does not

false negative blood tests are quite common in children under 5

try getting some gluten into her diet in all the very many things it is hidden in - she won't really know shes eating it in sauces, flavourings etc - or have some of her favourite treats - what does she like? pizza, cake? hot dogs? kitkat? fish fingers? ice cream cone? every little helps!

if you have not already seen it, the coeliac uk website has excellent advice - and their phonoeline is very helpful too

Our son with similar symptoms (he is coeliac) was tested both for coeliac and wheat allergy as they can present with similar symptoms - has she been tested for allergies? These were done via the same blood test.

I an extremely weary about the advice of putting a child on a full gluten diet when they are very sick. Although this is the general advice for people with suspected coeliac, you need to explain to the consultant how sick your child is when they eat wheat and they WILL find another way.

My DS2 had put himself on a gluten free diet, his bloods were positive. We were advised to go gluten free whilst we waited for the biopsy appointment and then he had 2 weeks on slight bits of hidden gluten and he had total villi atrophy.

The difficulty with coeliac is that everyone is so different.

My older son was also diagnosed with coeliac and had no symptoms whatsoever. It was a doddle to keep feeding him gluten as he loved pasta/pizza/bread and had no symptoms, so easy to follow that advice. However he had also total villi atrophy.

If I were you I would push for an allergy test in the first instance and then go back the coeliac route. Either way it is pointing to wheat. Hope this helps a bit xx

Thank you for the replies, we are going to increase her wheat intake slowly from today and see how she gets on. I did explain to consultant that we may struggle to eat the amount of wheat based food he recommended (at least 2 slices of bread a day plus one other meal containing gluten) but he said it has to be done. After much encouragement she ate a very small bit of a sandwich at a birthday party today and plenty of biscuits and a slice of birthday cake so we shall see what effect that has on her tummy over the next couple of hours.

She hasn't had any other tests for allergies, the consultant thinks the best course of action is to look at confirming or excluding coeliac in the first instance and then go from there.

I will take a look at that website. Thanks again for the advice - it all seems quite daunting at the moment.

keepmum thanks for posting. We are looking at it as a necessary evil but it is very hard deliberately giving your child things that you know will make them poorly.

I think I'm going to try and give her as much as possible in things that she won't necessarily associate with wheat as I think she will find that less upsetting. Just getting her to nibble a tiny bit of a sandwich was quite a battle as she is so used to not being allowed things with wheat and has been very accepting of that for quite a while, so I guess it must be confusing for her when we are now encouraging her to eat things we've said she can't have!

Does anyone know if it is Gluten rather than wheat, will it take a while for her to start getting poorly again or will it be fairly rapid? We have been restricting her wheat intake but not excluding it completely for the last 5-6 months.

TIA

It does sound like coeliac disease to me. Very unlikely to be a wheat allergy as this would involve different symptoms and more immediate (I have a DD who's coeliac and a DS who's allergic to wheat among other things). I know how awful it is having to feed your child something you know gives them problems but it is very important to get a definitive diagnoses as coeliac disease is a life-long auto-immune disease. Good luck and keep us posted.

Thanks for the replies - I have been slowly increasing her wheat intake over the last few days. No obvious effect on her tummy so far which is making me think maybe Coeliac is looking more likely as I would have thought her tummy would have been upset by now by past experience if it was some kind of wheat intolerance as I first suspected.

We've been to a party today and she has gone wild with the cakes, so no battles trying to get her to eat wheat today! Will keep you posted. Thanks again for everyone's posts, I really appreciate it