At the end of my rag with docs

[MrsKnowName]

I have been having issues with my DD who is 3 for around a year, but it is getting worse.

She has the following symptoms:
bloated tummy,
sore tummy
can sometimes not go to the loo for up to 5 days but when she does go its "normal" bowel movement.
Wind

These symptoms come and go with no real pattern. When she has a sore tummy she will lie on the sofa holding her front bum (for use of a better word) and wont get involved with playing. She has spent days like this. I took her to the docs earlier this year and they gave us Movicol to try. We have been trying this however it doesn't seem to be making much difference. Plus Im just not convinced this is constipation. A few months ago I tried removing dairy from her diet but again it didn't seem to make much difference.

Last weekend we were away and every lunchtime for 5 days my dd had sandwiches. Last week was the worst she has been in weeks (if not months). She was in a lot of pain and discomfort. Im now wondering if she could be intolerant to gluten. To me all of this seems to point more to an intolerance than constipation. I have been to the doctors several times and they are uninterested in investigating further. They keep telling me to keep on with the movicol and pain killers when she is sore.

I now feel I have to try something so I am planning on reducing the amount of gluten in her diet and see if it makes an impact. I was going to do this for 4 weeks and if she doesn't have an episode in these 4 weeks I was going to take her off movicol (maybe after 2 weeks). I was then going to try give her normal bread again and see what happens. Does this sound ok?

All the advice I can see seems to suggest you need to discuss this with the docs but they were not at all keen when I mentioned the dairy intolerance (lots of family history). Would it be dangerous to try this without going back to the docs? Do you think it sounds like it could be an intolerance? Sorry for the long post!!

I forgot to mention that DD doesn't normally eat sandwiches - hence this was unusually large amount of bread that she ate while on holiday.

According to Coeliac UK abdominal distension and lethargy can be symptoms of coeliac disease. Perhaps it would be worth contacting them for more advice about the suspected gluten issue? However, to get an accurate diagnosis, DD will need to keep eating gluten AFAIK. There is a helpline number at the top of the link above. My preference would be to speak to Coeliac UK first, then return to your doctor if they advise that DD should be investigated for Coeliac. If it is Coeliac, it does need to be diagnosed properly as it can impact other areas apart for GI (e.g. can cause anaemia, also poor uptake of calcium). There is increasing evidence that Coeliac is underdiagnosed, due to beliefs e.g. that people with the conditions will be underweight, with diahorreal symptoms. Hope this helps

Thanks, is there a difference between wheat intolerance and gluten intolerance? On some web sites my dd's symptoms seem to fit the symptoms better but on others they don't. I don't think she has Coeliac disease but I feel something is causing her problems. I'm going to start a food diary now and see if anything comes of it. I might try giving the helpline a call.

I was also just reading about IBS, I wonder if that could be it? Sorry it sounds like Im all over the place. I currently don't have a diagnosis Im confident with from the doc so I want to keep my mind open.

I still think it would be wise to check out Coeliac, even if to exclude this diagnosis, as it can impact other body systems and needs to be followed up. Hopefully the helpline can point you in the right direction.

You definitely need to take her for a coeliac test. Those are all symptoms my DS1 had before his diagnosis. Coeliac is an autoimmune disease, not an intolerance, and it's very important to exclude it before looking for other answers.

Don't change her diet, as the test won't work if there is not enough gluten in the diet.

The first step is a blood test. In children, that is now often enough for diagnosis without further investigation.

Good luck.

Thanks for all your replys. Will they do a blood test in a 3 year old? She isn't losing weight she is growing and putting it on fine. Nomdemere was your DS losing weight?

I'm hesitating as I have just been to the docs and they are sooooo dismissive so I was wanting some hard evidence. I have been told by the docs its toddler diarrhoea(but she doesn't have diarrhoea) or constipation (when she goes without the movicol its normal just takes a while to get to the point of going and is in discomfort until that point).

I think she has a lot of the symptoms of IBS. The pain goes away after she has a bowel movement. I think I will give the helpline a call and see what they say. If they suggest a blood test then at least I have them behind me for backup with the doctor.

My main issue is that the docs are listening to the current treatment, not one has asked and listened to the original symptoms.... I need to find a way to get this across to them.

No, my DS wasn't losing weight. He was gaining weight (although very slowly slipping centiles - over 2 years he went from 50th centile to 9th, but was still within normal range.

I think that delayed diagnosis considerably (it was nearly 2 years from when we first took him to the doctor until he was tested for coeliac - I really, really wish that we had known about it, and pushed for him to be tested sooner). Coeliac UK say that more than 50% of coeliacs are actually overweight, not underweight at diagnosis, but many doctors are still ill-informed on this point.

Here are the NICE guidelines to testing for coeliac disease GPs have to follow these guidelines. Your DD clearly has enough of the symptoms to warrant a test. If I were you, I would take a printed copy of these guidelines with you, and highlight the symptoms your DD has.

No-one should be diagnosed as having IBS without having a negative coeliac test first - Coeliac UK have just done a big campaign on this point!

Please do insist on getting your DD tested. A 3 year old can be tested. My DS was 4 when he was diagnosed. (although there is a risk of a false negative, because the immune systems of children under seven are not yet fully developed - i.e. even if she tests negative, there's still a chance of her being coeliac).

No-one should be diagnosed as having IBS without having a negative coeliac test first - Coeliac UK have just done a big campaign on this point! nomdemere

This is an important point, especially in children: recent research has found that a diagnosis of IBS in children was a risk factor for coeliac. As has been implied above, it's as important to exclude coeliac as to get a positive diagnosis, due to its potential impact on various parts of the body if left undiagnosed. Self-diagnosing and treating conditions, particularly those which have major impact on a child's diet, is not a good idea, imo. It is a pity that some doctors appear reluctant to pursue parents' concerns but I would persevere, get advice from Coeliac UK and get your DD's recurring symptoms properly checked out.

please persist, sadly many GPs don't understand that the parent knows best, and are not at all clued up on coeliac and other food issues.

My story DD1, huge 10lb baby at birth, developed normally, very bright articulate toddler, at almost 2 suddenly started having foul pale fluffy stools overflowing every nappy and lots of wind. she was also very fair skinned, but so am I. Googled the symptoms and she was a classic case of coeliac.GP fobbed me off saying it was probably toddler diarrhoea. fast forward a couple of years, we have another DD who is rapidly catching her sister up, same shoes size, same weight despite being just over 2 years younger. The HV says "this might indicate a growth hormone deficiency" and refers us for blood tests at GPs. GP (different one) immediately suggests coeliac disease as an option and orders masses of blood tests. Bingo. DD is admitted to hospital the same day because she was so very very anaemic. they actually could not believe how well and active and happy she was. she has always eaten well, not been picky, and been healthy apart from a couple of hard to shift chest infections when she started school. Now 14 she is the picture of health and has suffered no long term complications. Even with this history, yet another GP would not listen about my concerns over DD2 some years later. said she was refusing food as a power game and to get given what she wanted to eat! wrong again!

MIL on the other hand, had been told for 40 years that she had IBS, and only once DD1 was diagnosed did she really know what her problem was. for years her diet had been gluten free because she had worked out for herself what she could eat and stuck to plain rice, fish, chicken and a few veg. Her own father was probably a coeliac too as he died of bowel cancer and had always had a "dodgy tummy" but was of the generation who did not discuss such things even with a doctor.

oh and DD had also gone from the 99th centile to the 0.5th over her 5 years of life. But because she was our first and WAS growing and WAS gaining weight, we had no idea that her progress was not rapid enough.