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.

Cherry, isn't that wonderful??!!! It's unreal how food can messup the head (and quite a lot more). I am happy for you and with you! After 2.5 years of g/f diet, I am still floating on the cloud myself.

Bee, with a child you have to be very ill to have celiac confirmed; confirmed or not, look dr straight in the eye and ask if he would consider diagnosis on the grounds of dietary response. Not sure if you are dealing with GP, GI or a paed, but don't let them send you from pillar to post for too long.

cherry...I think taking dairy out of her diet has done the trick. I've learnt, the hard way, with dd1, that dairy can cause real tummy ache if you are having problems digesting it (lactose etc). With the meal your dd has had today together with some vitamin supplements (ie Minadex) I'd say you are on to a winner! Congratulations!

Well whoever bodysbatched my baby brought her back, she has been so tired and miserable today. Going to give her another week on dairy free and minadex and take her to docs if no better. I am feeling really stressed about it now as I thought I had worked it out. I know that it has to be food related, will keep researching, In my experiance if you go to the doctors with your own theories they are much more helpful.

Cherry,

Just googled coeliac, and found these symtoms.

Poor appetite, irritability and a failure to gain weight are usually the first symptoms.

Pale, bulky stools that smell nasty.

Vomiting and diarrhoea, which can lead to a wrong diagnosis of gastroenteritis.

Swollen stomach.

Arm and leg muscles may become wasted and thin.

Have to say that this is all your DD1 to a T , get her taken to the doctors,dont bother waiting any longer (u have let this do your head in for long enough). I know that your wonderfull Mum will come with you for support but if you want me to come give me a shout, im free any morning this week.

Thanks 2cute, will try to get her in, I have also just been looking at the symptons on 10million websites and come to the same conclusion. Also are you saying my dds poo smells!
Also aren't you supposed to be watching LOST?

DH and my dad have taken over the TV watching bloody football aaaarrrraaaaaaaahhhhhh

But its OK im about to sulk off to bed and watch it in peace .

cherry - hows things going with dd?x

Hi whispy, Been a lot better again today, behaved all day and not fell asleep after nursery. Ate all her dinner, still tired but not nearly as grouchy as usual. Am taking her to the docs tom morning to see if we can get some tests. The eating thing is mad, 3 days running she has cleaned her plate, veg and everything of things that she has never touched before in her life.

cherry - glad she's doing ok. What tests are you going to ask for? What are her number two's like these days?!

DD2 has got her pre-school MMR/meningitus tomorrow - I'm not looking forward to it at all....I hate to see them so upset but she may just be fine..I don't know! She has spent this evening reminding dh he has to go to Argos on his way home from work tomorrow for a present for her for being a good girl with the 'needles' !!!!

Doc has asked for test for coaliacs as well as diabetes (scary, his idea not mine). She performed perfectly, got into room and curled up under his chair with her fingers in her mouth and then had a screaming tantrum. Hope your DD got on OK with MMR, we are due that too but waiting until a bit stronger. Doc said that he thought allergy think may be a slight red herring although she is obviously lactose intolerant so wanted to test for other things befopre reffereing us to gastro jobywhatsit place. Will refer us in 2 weeks if tests come back clear. I am now going to google diabetes as I am even more worried than I was before.

Hi cherry.....MMR went ok thanks - two jabs with lots in both and imo a lot for a little body to deal with but hey, its done now.

Is your dd still eating well? Why does the dr want to test her for diabetes? What other symptons is she showing? Why test her for coeliacs?

If she is eating well and keeps everything down, digests it and has normal number two's why does your GP want to test for both? If she had constipation, diarrhoea, bad stomach pain, lack of appetite etc that'd be different!

She has all off those, she has been eating for about four days, not eaten well for about 4 years. Moods swings, exhaustion, drinks constantly and wees herself a lot (never even thought much of that). I think lactose intolerance can be a side effect of other things and she is still def anemic (can tell just by looking at her). I think he said that there were a lot of things that could cause her symptons in a child so they had to test for everything just in case we mask something by changing her diet. I guess we will find out soon enough. I don't actually know if the coaliacs blood test is any good in small children

Cherry there can be false positives in the coeliac blood test in both adults and children, but it is much more accurate than it used to be (I believe 99%). However if it does come back positive, then your DD will be referred for a biopsy of the intestine to confirm the diagnosis.

My DD was finally referred to a paed when she was 2.7 after she hadn't gained any weight for a year and was constantly ill with one virus after another, constant constipation/diarrhoea, vomiting every 2-3 days etc. She was tiny with stick legs and no bum, but she had a huge tummy - with hindsight a classic case of malnutrition . But strangely, between her blood test and her biopsy she seemed to go into a sort of 'remission' (for want of a better word). She had energy, she stopped vomiting, she started eating better (she was still eating gluten at this point). I had almost convinced myself the blood test result was wrong. Then a couple of days before her biopsy, she vomited again and we were back to square one. Fortunately, they confirmed the coeliac within 2 hours of the biopsy; she went gluten-free the next day and within 2 weeks all her external symptoms had disappeared - she had energy, she ate huge portions of food, no vomiting, no constipation/diarrhoea and she looked well - her complexion was grey before.

Anyway, sorry - I'm rambling. But what you were saying about your child having been replaced by another in the last few days rang a bell with me. Definitely worth pursuing the coeliac symptoms at least as far as a blood test; at least if it's negative you can then put that to one side and start looking for answers elsewhere. Best of luck.

Know what you mean about the looking grey thing. Today has been very up and down she is just so bloody touchy, spent 50% of the day behind the sofa in tears because grandad raised his voice after asking her 500times not to do something. Do you know how long the blood test results take, I just know I am going to drive myself potty while we are waiting, especially the diabetes one, I don't really know why but that is the one I am most scared of.

I know the coeliac results can take up to about 3 weeks. I don't know about the diabetes ones though. Hope you don't have to wait too long.

Cherry, as regards to how long you may have to wait for the results for diabetes. I would post a thread on the health board. Im sure you will find other parents that have been in your position.

(((((((hugs)))))))))

You know where i am, if you need me.

Not as bad as I thought it might be today. Said to start phoning docs in one week and keep nagging from then, diabetes one should be first to come through. DD was so brave, and well behaved (not for the rest of the day mind).

results not back yet. My mum ordered the tests for coeliacs of the internet for herself and me, hers is negative, will do mine tommorow although hope it will be negative (should be). Can't stand having to wait so long for dds results though, how come it takes so long when you can do it yourself in 5 mins

No news yet, test results were back Friday (probably not coeliacs one though) but I can't get them until we see the doc and they couldn't fit us in until Mon afternoon.

She has actually seemed a little better over the last few days, has been on the minadex tonic for 2 weeks now so hopefully that is making a difference. I think she is definatley aneamic the big question is why.

Just got back from the doctors,
All her tests are negative, coeliacs one is not back yet, not diabetic, anemic or thyroid fundtion.

Docotr said could be a couple of weeks until the blood test comes back so to go ahead and put her on gluten free diet asap.

He said it doesn't matter what the tests say if the diet has a positive effect that is the best way to find out what is wrong. She is now back on dairy,although her ds is not,as it didn't seem to make that much differnece.

Said he will refer her to gastro joby watsit in couple of weeks no matter what the test results come back as.

Said he will also refer dd2 as no harm in testing her before she gets ill IYSWIM.

I finally feel slightly in control. Doctor said to try and substitute her normal foods as to cut anything out could be problem with her diet not being too good.

Does anyone know of any sausages that are OK, I know they are not ideal but she loves them. Also what would you do for nursery pack up tommorow?

I am very surprised the doctor has told you to go ahead and take her off gluten at this stage. The gastroenterologist will be unable to do the tests which would confirm whether she has coeliac disease. It means you will not have a definite diagnosis, which I don't feel will be helpful in the long term.
It also measns you won't be able to get the gluten-free foods on prescription; gluten-free alternatives can be very expensive! Why did he not refer her at this stage and let the specialist decide on the appropriate course of action?