Please advise me if you know about coeliacs or other digestive problems

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My daughter is 4 and has always had a very sensitive stomach. As a baby she was sick a lot and grumpy, the grumpiness got worse at weaning (although I didn?t think of the connection at the time). As soon as she started talking she regularly complained of stomach ache. By the time she was nearly three I was quite worried about her as she was always ill, especially with stomach bugs, her poos were often runny and odd looking, she was often in pain, she had very little energy and often cried about being tired, she suffered from regular mouth ulcers and her hair had never grown. I got a referral to a paediatrician.

The paediatrician immediately thought DD might have coealics disease. Her grandmother has this disease so it runs in my husband?s family. DD had the blood test but it came back negative (I have since heard this isn?t uncommon in someone so young). The consultant suggested excluding gluten anyway and we did. Things got quite a bit better: more energy, less complaining of pain, more solid poos, fewer mouth ulcers, fewer viruses and her hair even started to grow. She has been gluten free ever since but this means we cannot further investigate whether she does have coeliacs because that would require a return to gluten for several months.

Over the last two weeks I feel we have regressed back to where we were. DD has lots of stomach pain, often waking her in the night, her poos are runny and pale, she has no energy and is really grumpy. I don?t think she has been exposed to gluten so now I am concerned that she either has a reaction to something else in her diet or gluten was never the problem and this is the return of a condition that happened to get better before. In the back on my mind I wonder whether it could be a reaction to excessive sugar as she has been to multiple birthday parties recently and because she often can?t have the (gluten) cake the hosts give her loads of sweets, jellies, chocolates etc.

So I have a few questions:

• Those of you who know about coeliacs, do you think its worth trying to investigate whether that is the problem even if that means putting her back on gluten?
• Does this sound like any other condition?
• Can children react this violetnly to sugar?
• This flare up is only a fortnight old, should I seek a referall or wait, (she is unbearably miserable day and night).

Eosinophilic Disease might be interesting for you to look at.

Gluten can hide in s many things- haribo for instance used to begf but they no longer conform and my coeliac son is super sensitive and def reacts to o them. If he has gluten then he is ill for 2/3 weeks

Coeliacs react badly to lactose if their gut is damaged by the disease.

I do agree, gluten is hidden in so many things. Check everything minutely to see what it might be.

I think the need to be do vigilant about excluding gluten is a reason to go for a formal diagnosis. Excluding every dot of gluten is such a challenge and maybe I need to know that it's definitely necessary. Also if she got a formal diagnosis presumably I'd get good advice on diet etc. Would others go through the hell of months back on a gluten diet in order to get the endoscopy?

Firstly, symptoms do sound like coeliac.
It is very possible that she has had something with traces of gluten, my DCs are coeliac and even though we are super vigilant, gluten creeps in every now and then. Lots of sweetes, chocolates and crisps contain traces of gluten. My DS1 had some chocolate at the weekend that had no ingredients on the label that contained gluten but felt he had eaten something with gluten. When I checked on the companies website it said 'can contain traces of gluten'.
I was very keen for my children to get a diagnosis of coeliac before they went gluten free, however they were still having gluten when they were tested. Now that they are gluten free I would find it difficult to reintroduce gluten into their diet, so I'm not sure what I would do regarding pursuing a diagnosis. What I would say is 6 weeks on gluten then a blood test could at least give you answers, without a diagnosis you may end up always having doubts as to wether or not it is coeliac, whereas another negative result may suggest the problem is something different.
A formal diagnosis for coeliac also means children will have yearly blood tests to check that a GF diet is being followed as if gluten is finding it's way onto their diet over a long period of time it can have long term health effects.
Whatever you decide I would recommend trying to get referred to a dietician.

Just to add, diagnosis can now be made on bloods alone in some cases. My DS2 was diagnosed on just bloods, but DS2 had to have an endoscopy as well.

My dd (8) is a super sensitive coeliacs it's not fun wheat gluten barley oats and rhy can be in everything my dietitian is no help and I find out what I can from coeliacs uk but I know I let my dd down she gets a bloated tummy tummy cramps dark circles round her eyes bad moods bad bowl movements I hate seeing het like it. She was failer the thrive at 1 so was sent for tests it was horrible and still is
I feel very alone

If shes really sensitive to gluten the food you eat could contaminate hers. My mum has cealiac disease she had to keep her food well away from ours. Also check ingredients of new things, a lot of things you wouldnt expect to contain wheat/gluten may actually contain it, i remember my mum being suprised to find out a certain make of chips had wheat gluten in, so its best to check pretty much everything! Hope you get it all sorted soon

This is such a difficult situation as it does sound like coeliac disease and getting the correct diagnosis is very important but the thought of putting her through a minimum of 6 weeks of pain and discomfort seems very cruel. I remember how awful I felt with my DD when her blood test was positive and we were 99% certain she was coeliac but we had to keep her on gluten, the very thing making her ill, for another 6 weeks while we waited for the biopsy.

I also think it was very wrong for the consultant to suggest removing gluten from your DD's diet after the negative blood test. The NICE guidelines state that if coeliac is still suspected you should be referred to a gastro specialist for further investigation. False negatives are quite common with this particular blood test (whereas false positives are virtually unheard of). My first thought is therefore to demand a referral to a gastro specialist. They might in fact suggest re-introducing gluten or given her symptoms they might consider doing a biopsy anyway but they should at least be far more knowledgable about this sort of thing.

She has her own butter toaster part of the kitchen we are careful with her food we check every think but she still gets Ill we need a rethink I think :(

Thanks everyone. I've booked an appointment with the GP to ask for a specialist referral. If they suggest returning to gluten for testing then I'm just not sure what I will do. For the last 48 hours DD has eaten only yoghurt for breakfast and only plain rice and steamed veg for lunch and dinner. She still doesn't seem right though :-(

I think it takes a long while to get in and out of your system as far as i can remember it can take months for cutting out gluten to have any effect. Also im pretty sure they tell you not to cut out the gluten before a test for it. Hope you get some answers soon