so many questions.....possible food allergy? could anyone have a look at symptoms and tell me their thoughts.....

[bootus]

My ds is 18mo. He has always been a poor eater despite trying, well, everything! He has had a poor run of health this winter with lots of bugs, though touching all wood we have had a relatively healthy month and was always a sicky baby, (reflux). However, he is failing to put on weight, he was born on 91st centile and now hovers around the 9th! Whenever I've queried this with our gp Ive been made to feel like a melodramatic mum. He is often pale and dark eyed, with swollen eyelids. He does 4/5 fairly revolting nappies a day. But ultimately just doesn't seem to enjoy eating, spits out most food and rarely eats a good amount. (and he continually has enlarged lymph nodes in his neck which I've been told is totally normal by doc but indicates to me his body is fighting something.) Please help. Thankyou.

Could be an allergy, could be just the time of year. Dark circles around the eyes are often a sign of allergy, but equally much are a sign of poor sleep quality.

Does he have eczema? Does he appear to have a permanently stuffy nose?

How much and what type of things does he eat in a typical day?

Doesn't sound quite right to me. I'd get an appt with a different doctor. Have they tested for coeliac?

In the past I've had to take a stool sample in for my DD1 (the surgery can give you a bottle just like a urine sample bottle with a scraper attached to the inside of the lid - you scrape some poo from the nappy and seal in the bottle).

I would go and see a different doc.

My DD now 12 was the most horrendous baby and toddler. Honestly. I'd had an awful pregnancy and thought it was me projecting onto her. Even though I have 2 older boys and never had any issues with them.

She wouldn't eat, did horrible nappies, cried all the time, didn't sleep etc etc

To cut a very long story very short, took her to the GP for the billionth time, saw a locum GP who actually took me seriously and arranged for tests.

She had multiple food intolerances - dairy, wheat, eggs, soya, nuts, ended up on special diet, very similar to PKU she couldn't digest long chain protein.

Sorry for the long post, but go and see a different doc if you can, if not ask for a referral to a paedeatrician.

Thanks all so much, he suffers with mild excema from time to time and his sleep is pretty good but yes he is often stuffy nosed and the dark circles are ever present despite good sleep. And he is prone to funny rashes. I try to feed him a good diet, he eats lots of fruit though veggies are a bit hit n'miss. I make lots of homemade pastas, shepherds pie etc. The only thing I can guarantee he will happily eat is hummus and crisps which is obviously not what I want. He doesn't even like chocolate or ice cream! All 3 meals are a struggle and its a happy day if he eats more than a few mouthfuls. I am going to the doc tmw and will be more insistent. Thanks again.

bootus, let me know how you get on. I know how hard it is to get taken seriously. If it helps, my DD also has mild excema, asthma, and her diet is still not the greatest. We used to have huge wars (not even rows comes close it was honestly wars) over every mealtime and in the end a friend of my mum's who'd been through the same thing told me to just feed 3 square meals a day, with a couple of small snacks, don't feed stuff you know they don't like and other than that don't react. DD used to be in a tantrum before i'd even started to feed her, if that makes sense? Even thinking about what would she eat, when would she eat, how much would she eat used to send me scurrying for the loo for a cry before I even got the meal started.

Thinking of you.

My DS2 had pale face and dark circles, little energy, swollen lymph nodes on his neck, acrid smelling stools and poor appetite. He didn't put any weight on for a year and was almost always permanently ill with colds and temperatures. He tested positive for coeliac disease and now has a wheat free and gluten free diet. He is now in extremely good health with a great appetite. We tested DS1 as well who didn't appear ill and he has coeliac disease too. Don't be fobbed off unless you feel he has been properly tested. Good luck.

thankyou all so much for your responses....booner you have described my ds to a total T. Can I be really ignorant and ask how they test for coeliac disease? Agasarecool...thankyou, honestly, its not nice to hear of your difficulties but nice to know we're not on our own.

They usually test for coeliac first by a blood test, but this can give false negative results and you must be eating a fair amount of gluten to get a positive result. However, because this prone to false negatives it is not considered a diagnostic test, but only an indicator that further testing is needed. Further testing is an intestinal biopsy.

The NICE guidelines are available here www.nice.org.uk/CG86.

We are also having similar problems with ds2 (who has confirmed dairy allergy, but we are pushing them to look closer at coeliac). He also hasn't put on a significant amount of weight in a long time (now 22 months) and screams at the thought of food. According to our paed and dietician this is all normal .

Hope you get to the bottom of it soon.

Maybe try also posting on the allergy boards as there are quite a number there with experience of coelic amongst other allergies.

The very first thing that went through my head when I read your post was coeliac disease. Your GP must arrange for your ds to be seen by a paediatrician who can help to assess your ds and organise the investigations for coeliac disease.

First of all you MUSTN'T take them off gluten or any other food you may think is irritating them until they have been tested - though it is VERY tempting to want to! It is a blood test first which shows raised levels of TTG (I think) which is very accurate but they often want to do a stomach biopsy as well which definitely proves it. My DS2 was 3 years 4 months and I really didn't want to put him through the biopsy and my consultant didn't force us to. Other symptoms I forgot to mention were irritability and bloated stomach. It was such a massive relief when he was diagnosed and a year on he is so energetic and healthy it amazes me - I really hope you get some answers as although the symptoms don't seem serious on their own, when you put them all together it could indicate there is a problem. Really hope you get to the bottom of it soon.

There is > 1 blood test, the most often used tests for IgA (a type of antibody) - it's not very accurate (around 80%), i.e. 1 in 5 tests are wrong. With children this accuracy is even lower. The other thing they can test for is IgG (another type of antibody). This is also fairly inaccurate. Therefore a negative blood test is still not proof that coelic is no the problem.

Another vote here for coeliac disease. DD1 suffered very similar symptoms to your DS before she was diagnosed. Your GP can arrange the blood test at the same time as referring you to a paediatrician - not sure why, but coeliac blood test results take longer than others to come through, so it would be worth getting things started while you wait for the referral to come through.

Even with a positive blood test, your DS will probably also have a biopsy of the intestine to confirm the diagnosis (even if the blood test results are inconclusive, it would be worth pushing for this anyway, given your DS's symptoms). But whatever you do, as others have said, you mustn't take gluten out of his diet - otherwise you will get false results on the tests.

It's worth having a proper diagnosis for coeliac diseases, as you get quite a bit of gluten-free food on prescription, and it's important to have annual check-ups to ensure everything is ok.

Just to reassure you - although the endoscopy/biopsy is not pleasant, it's done under GA and your DS will not remember anything about it. Also, if it is coeliac, then going gluten-free is fairly straightforward - all the supermarkets stock GF foods, and the Sainsburys and Tescos ranges are particularly good. Post diagnosis, DD1 was a changed child within 2 weeks - gained 1/3 of her body weight in 12 months and is now a very healthy child.

Might be worth checking the coeliac uk website to get some more info on symptoms etc.

wow, thankyou all so much. I wont remove any foods from his diet, would be reluctant until diagnosis anyway just in case I am blowing all this out of proportion but the more I read your posts the more I think he is potentially a coeliac disease sufferer. Thankyou for the advice and recommendations....i wont leave my gp tme until i feel somehting pro active is being done. I just need to be strong and stand my ground!!!

Sorry bootus it is important for me to say that my niece had already been diagnosed with coeliac disease and sometimes it runs in families. So after long discussions about symptoms with my sister and our consultant the decision was taken not to do the biopsy. I would have had the biopsy had my niece not been diagnosed.
As tkband3 says it is important to get a proper diagnosis so you would be eligible for prescriptions and regular checkups

I did the same with my DTs Booner - when their blood tests were positive, their consultant agreed that they didn't need to have the biopsy, due to the family history, and confirmed their diagnosis based on the blood test results alone.

bootus - unfortunately many GPs are remarkably uninformed about coeliac disease and are quick to dismiss the symptoms, particularly in young children. I was dismissed as a neurotic first time mother for nearly 2 years with DD1 and I feel hugely guilty that I didn't push harder. I think there is increasing awareness about coeliac now, but as you say, don't leave your GP until you feel something is being done.

Hi all, just to update you, I went to my GP today who has referred me to a paediatrician, he said the paed would refer me for all neccessary blood tests. He seemed reluctant to order bloods himself. He was very nice and seemed convinced when I showed him DS's weight chart and discussed all the symptoms, particularly the revolting nappies all day!!! I just wanted to thankyou for all your advice.

Bootus, I am very pleased and relieved for you that you have been referred and hope you have some answers soon.