I didn't want to steal a thread, please advise.

[cherryredretrochick]

I have been trying to work out what is wrong with my 4yo dd for a while now. As a baby she was lactose and soya intolerant although she had blood tests and had grown out of it at about 2yo. She has always been incredibly tired, sleeps 12hrs a night and can still have a long nap in day. She has the most horrendoues tantrums about everything. She eats plenty although her diet is quite limited I try to keep it as balanced as possible. She will not eat a meal and states after 2 mouth fulls that she can't eat any more or she will be sick.
I have taken her off dairy about 4 days ago although there has been no chnge yet, first time round it was immediate. I do not want to keep her off dairy for long as she is very underweight.
Anyway I have been reading another thread on here and it could be us. I have also wondered whether there is something behavioural, although i know really that there isn't. Would it be worth trying to exclud4e wheat and gluten, how long would you do this for, would you put her bcak on dairy first and a million other questions that I hope someone can help me with. I would rather not put her through tests again as I remember them being very traumatic, I will if needed but if I can sort this out without then that is better. The other possibility I have thought of is aneamia. Please Help.

[aquariusmum]

She hasn't got coeliac has she? I am usually on the SEN threads as my DS is autistic, which is obviously not the case here, but he has got eating/bowel problems too and one thing I have found really helpful is a probiotic from the US called Threelac. It says that it fights yeast/candida in the gut, and it has certainly helped my boy's diet. I may be barking up the wrong tree altogether, but I can pretty much fee him normally if he takes this supplement. I did try all the gluten-free products for a while, and that worked a bit, so I figure my boy has some kind of wheat intolerance, though coelic was ruled out with a blood test. Good luck!

[cherryredretrochick]

I am not sure about ceoliac, wouldn't she have diarrhoea? She does have 'loose' and very smelly but not proper diarrhoea. Is that supplement Lactase based, I read sdomething about that helping absorbtion of lactose but not sure about the wheat thing, DD2 and I are both Lactose intolerant so is my area of expertise. I kmow really that her behaviour stems from being so tired all the time I just can't work out why. Need to get to the bottom before she starts school in Sep.

[whispywhisp]

Coeliac Disease would normally cause diarrhoea - light smelly stools.

Same applies to lactose intolerance - which dd1 currently is due to being so ill recently - she developed the intolerance from a persistent diarrhoea bug and has been in hosp with it. She is now on IBS tablets too.

DD2 was lactose intolerant from 0-2yrs. She will eat pretty much most things although she can be picky/fussy so I tend to cook meals I KNOW she will eat.

If her stools are smelly and a bit light in colour but not runny I wouldn't have thought she was gluten/wheat intolerant.

Does she ever complain her tummy hurts when she eats? When she eats the two mouthfuls of a meal do you give her anything else afterwards? Or is that it until the next meal?

If its of any help I have a 4yr old dd and they are hard work at that age!

[cherryredretrochick]

Doesn't complain her tummy hurst, does not get anything else, if it is tea will not eat again until breakfast the next day, recieves absolutly no attention for it, she is just totally ignored and told to sit at the table till the rest of us have finished. Her sister is then given loads of praise, pudding and treats (mean I know) as she eats anything in site. It is really hard trying to work out what is the problem and what are the symptoms IYKWIM.

[Tiggiwinkle]

Coeliac does not always cause a lot of diarrhoea. I have two DSs with it and both were more constipated if anything. I think I contributed on the thread you are referring to, in which case you will have seen that it really is not a good idea to try and self-diagnose by cutting out gluten. It has to remain in the diet until tests are done or they are otherwise unreliable.

[whispywhisp]

My dd was tested for coeliac last week - this was because she has permanent tummy ache around the belly button and has on/off diarrhoea (more on). She had a blood test done last week and we're still waiting for the results. Although my GP did say yesterday he didn't think she did have CD because there is a lot of food with gluten in and she'd have been more poorly....

Having said that taking dairy out of her diet I am sure has helped and we're fortunate that there are some lovely non-dairy items out there as alternatives..if anything nicer than what we eat! We took the dairy out of her diet on the advice of a HV and it has definitely helped her together with the IBS tablets she has been on for over a month. She still gets tummy ache but nowhere near as bad as before.

Cherry - does your dd eat red meat? Greens? You could be right re the anaemia but again it'd take a blood test to diagnose it.

[cherryredretrochick]

No to the red meat and the greens. This is why I think anaemia, although do any kids?
I didn't think of CD just read the other thread and so many similarities. With her allergy histories it is likely to be something. She also has terrible excema at the moment, hoped the dairy cut out might help with that but doesn't seem to have.
I know it takes so long to get any refferals, when she was a baby she had gone 3 weeks without eating and been classed as Fail to thrive before GP would refer her to a dietician. I am also worried about her being labelled again as all the labels seem to mean is that she got weighed weekly and HV pulled a sad face and said I'm sorry, never did anyhting else.

[Tiggiwinkle]

Your GP should be able to do a blood test straight away as the first step in checking for CD. There is an associated skin condition, which many coeliacs suffer from, so I would definitely get her tested.

[whispywhisp]

When dd2 was lactose intolerant she had dreadful eczema. We ended up getting prescribed cream for her.

When I took dairy out of dd1's diet it took a good week for her diarrhoea symptons to disappear.

As far as CD test is concerned - you just go to your GP - ask for it and they should just give you one of the bags with the note attached and get it done straight away. There should be no hanging around for a referral. The results take one week.

BUT...you must make sure she eats as normal as diet as she is used to as possible - don't cut out gluten/wheat from her diet pre-test otherwise the test is a waste of time.

Both my kids eat red meat and greens (sprouts/runners!??!!!)...but if your child has a history of allergies/intolerances I think it'd be worth checking her iron levels - this can be done with taking another sample of blood at the same blood test appt - if she won't eat greens/red meat why not look at getting her on some form of vitamins - I use Abidec for dd2 and Minadex for dd1 - they have iron in both and if she is a fussy eater there are loads of vitamins she probably needs boosting up on...hence the supplements. Both Minadex and Abidec are in fluid form and Abidec is tasteless - Minadex is orange flavoured. Both are put in drinks.

[cherryredretrochick]

Tbh I wouldn't be able to cut out Gluten without help from Dietician, With us all having varying amounts of Dairy, You could end up with a diet far to restrictive and that would do more damage then good. I never knew I was lactose intolerant until dd2 was born and we found out she was, i cut out all my diary and realised i had had Stomach pains and IBS for my whole life, didn't really noticew until they were gone IYSWIM. There are just so many possibilities that I don't know ehere top start, would like to go to GP with some idea. Current ideas are to ask for ceoliacs test and aneamia test as well as referal to dietician. i sometimes worry that my doctor thinks i make things up.

[cherryredretrochick]

Sorry wispy just seen your post, I give her multivits but they don't have iron in them. Cereals have fortified iron in them don't they. She eats loads of rice krispies although has stopped now as doesn't like 'soil' (soya) milk.

[whispywhisp]

I've learnt over the last few weeks, whilst dd1 has been very poorly, that as a Mum you have to make yourself a nuisance with GPs. My dh said to me the other night - I bet the GP sees our name come up on his screen and he says...'oh no, not again'!

The way I see it you, as her Mum, knows she's not right. You know your daughter better than anyone else. If you know you need some medical help you must go and get it regardless of your GP's thoughts on the matter. If you're not happy with your GP's thoughts you go and get a second opinion. I personally get a lot of help/advice from our HV. It was them who suggested we took dairy out of dd1's diet....not the GP nor the Consultant at the hospital but when I told them both this is what I'd done they agreed it was a good idea.

If she is low and lacking in certain vitamins and minerals this could well explain her behaviour too. After all the saying of 'you are what you eat' applies to how you feel in general too.

[whispywhisp]

You need to get her on some iron, imo. If she doesn't eat red meat/greens. Will she drink orange juice/squash? You could get the Minadex and conceal it in a drink. It acts as a vitamin supplement but also as a tonic and is designed specifically for children.

[cherryredretrochick]

Can you buy Minadex or do you have to get it prescribed? When we went to the GP before about poss aneamia he gave us some multivits but they didn't actually have any iron in them . When she was a baby I took her off dairy after she got very ill and I repeatedly took her to the doc, about twice a week and they repeatedly told me there was nothing wrong with her even though she was losing weight ( was underweight to start with) she was literally fading before my eyes (sorry but still makes me feel v emotional). Her behaviour has always been a problem and sometimes I think I am not as close to her as I should be. I just know that there is something physical causing it. I have been laid up for 3 weeks following an operation so have been watching other people looking after her, this is what has made me finally realise that I need to do something.

[whispywhisp]

You can buy Minadex - a bottle costs about £3-£4. It says on the box:

'Orange flavour tonic - builds up children fast. Minadex is a carefully formulated vitamin and mineral tonic which contains vitamins A and D, iron, calcium glycerophosphate and important trace minerals. Minadex contains a natural orange extract giving it a pleasant aroma and flavour which children love'.

For a child aged 3yrs to 12yrs - 1x5ml three times a day.

I put 2x5ml in dd1's drink each morning and I think that is adequate for her at aged 9yrs old.

I had a similar problem with dd2 - ie the 'not bonding' side of things and it took me about a year to properly bond with her - this was mainly because I had such a horrific time delivering her.

She lost so much weight at one point - when she was about 4-5 mths old that when I took her to be weighed her graph was going downwards not upwards. She was always so sick when we gave her normal formula milk/solids and I took her to the Drs so many times and to A&E when she was particularly bad. Again it was the HV who suggested, after seeing how much weight she was losing (we'd gone down a size in nappies too) that we remove milk/lactose and we tried feeding her soya milk. It was the HV who told the Dr to prescribe it and when she hit the 2yrs old mark she eventually grew out of it. She is now 4yrs old and fine.

If I were you I would definitely try upping her vitamins/iron because she could simply be feeling pretty low - especially in view of her restricted diet. Whenever either of my two have had colds or are generally feeling low I get them on Minadex.

I've tried it - it tastes really nice! If you can get to a Tescos tomorrow (Sun) they sell it and its on their shelf where the kids vitamins are.

[whispywhisp]

Oh sorry...to add to my bit about taking dd2 to Drs/Hosp/A&E....I was told every time...'oh she's just a sicky baby'....'normal for babies to do projectile vomitting'......and every time I walked away thinking I was becoming paranoid. It wasn't until she was losing so much weight that the GPs/Hosp finally took notice and that, as I said earlier, was with pressure from the HV.

Do you have a HV you could speak to?

[tkband3]

Have a look at the coeliac website for some more info on the symptoms of coeliac - www.coeliac.co.uk. It would certainly do no harm to ask for the test as her symptoms could point in that direction.

Just to add to whispywhisp's recommendation about iron etc, if she is coeliac then any supplements she takes will go straight through her along with all the nutrients from anything she eats. I proudly assured the consultant who did DD1's biopsy confirming her coeliac disease that she took vitamins/iron (the minadex you suggest whispywhisp) and she told me she wouldn't get any benefit from it until she was gluten free.

But as Tiggiwinkle has mentioned below and on the other thread, if you do suspect coeliac, don't remove gluten from her diet until tests have been done, otherwise you will get a false result.

Also - lactose intolerance can be a side-effect of undiagnosed coeliac disease, but this is something else to discuss with a dietician/paed, I don't know a huge amount about this aspect of coeliac.

Best of luck.

[nightcat]

celiac tests can be inconclusive in children, apart from full blown celiac, there is also gluten sensitivity, which a standard dr won't even consider.
Failure to thrive is one of the classic symptoms of cd/gluten intolerance.
Very rarely, if you are extremely lucky, a dr would consider diagnosis by dietary response.
I was so desperate to see if diet would work that we did it anyway - after seeing the improvement I felt it would have been too cruel to put him back on gluten to undo all the good work.
Our "diagnosis" is not CD, but gluten sensitivity - confirmed by a genetic testing in the end. We don't even get prescriptions, because I very quickly realised that you can't just replace one type of stodge with another without other problems, so we eat gluten-free & carb & dairy lite.
Prolonged gluten damage leads to malabsorption and weakens liver/pancreas so best to go easy on iron.
My pet subject this, look up The gluten file or celiac.com for more..

[cherryredretrochick]

Nightcat, what do yu eat then, I would love to have this kind of diet but can't imagine what it would be. I am not really thick i just get stuck in a rut with my families dietry needs as well as fussy eating, I know if there is an underlying prob this will actually be the cause of the eating probs but at 4yo I think there are physchological connections made that will need to be broken (ie foods hurts). Friends are often saying it is my fault she won't eat as I let her have a cereal bar after nursery, but I know that she won't eat her tea and can only eat little and often, I think it is better to do this than starve.
Wisoy, I will go and get some minadex today, can't hurt to try, if she does absorb it it may well be as simple as that (I hope so).
TK I had also heard that about caoliacs and lactose when she was a baby, had forgotten it. Tiggi, will try the GP next week, I have my mum with me at the moment so strength in numbers. Thanks for all the advice, any more gratfully recieved.

[nightcat]

breakfast - omlette with whatever comes to hand, hardly ever plain(veg, ham, sausage) + a little sauerkraut on the side, warmed up - it helps digestion; very occasionally a yoghourt with rice-based cereal + fruit; g/f pancakes (using g/f flour, water, mashed banana, ground nuts, flax & sesame seeds + other whizzed up fruit like prunes, raisins etc);
Always have a salad on the go, usually home made (cooked veg, coleslaw or leafy mix)
Dinner-lots of veg, some meat, I use rice or potatoes or g/f pasta, but never just on its own - always a small part of a dish, combined with veg or salad.
He eats lunch at school and navigates the minefield himself, relying on salads, or rice-based dishes with salads/veg. When we recently went to hosp and had a snack there, we got a salad + some potato wedges - he commented how disgusting the wedges tasted with the salad, so I think we have at last won the taste battle.
There is a good book that explains a connection between diet, behaviour and carbs - Gut and psychology syndrome by N. Campbell-McBride (sauerkraut and fussy eating explained). Answered a lot of my questions, even those I hadn't thought of at the time.
As for drs, we have been lucky if unorthodox: in a paed. appt years ago I said to him I will need to research it myself, because everyone has drawn a blank. He was very sceptical at first, but I later on presented him with various proper scientific papers and said I need to explore this with his support. From then on, we only needed one referral to a neuro across the country and a few blood tests. When you find out what's working, then you will be in control.

[BeeEm]

Hello.
Am gleaning information and ammunition.
I really think i will have to develop a thicker skin - don't like the thought of drs thinking I'm an insanee overprotective mother.
Nightcat - love your idea about geting your own research. will be gathering a little later!
DD has appt on tuesday for Coeliac blood test and also paed appt for 30th.
Cherry - good luck!

[LucindaBG]

And cooking gluten free actually isn't that hard once you get used to it.

Very few "main courses" really rely on gluten for structure. It's there for carbs, but GF pasta is readily available and not at all bad. making sauces with cornflour is a little different, but it's perfectly doable.

Baking is not too hard either: Gluten Free Pastry is actually easier. Have a look at my profile for more.

[cherryredretrochick]

O, you are not going to believe this, I don't I think I must be imagining things. Today my dd has been body snatched by the most compliant even tempered child who actually eats. She has been off Dairy for 4 or 5 days now. At GPs today, she said yes when I asked her if she wanted a wee and then went for one. , may not sound like much but would normally cause a 30min tantrum followed by an accident. Time to go home, worse of all, I said we should go soon to DH dd said oh yes mummy, collected her clothes, dressed herself, kissed everyone and left. Never been hreard of. So we get home (I think I may have floated home) dh is making dinner, dd has never eaten a veg of any desccription in her 4 years asks for a raw carrot and eats it, goes back for another one . We are about to sit down for dinner so will see if it lasts, even said she wanted to try the brocolli, unprompted. WTF, has my poor baby just had tummy ache for years. Got some off the tonic stuff today and shre loves the taste so that should go down OK. I think i must be drunk as this is not my house!

[whispywhisp]

Hi cherry...that's great news. Well done!!! Sounds to me that you've turned a real corner here...perhaps taking her off dairy has helped and if she's starting to eat veg and likes the tonic...well that's simply great. You can't do better than that!

[cherryredretrochick]

OMG, she has just eaten brocolli, mash, carrots and chicken, none of which she has ever touched, without being asked. someone pinch me.