I need someone to TELL me what to do about DD.

[NaughtyNigel]

Further to my many questions and rants about DD.

1. nausea and abdo pain.
2. mood and behaviour problems (although much better of late with intensive cheerfullness from DH and me)
3. skinnyness.
4. rubbish diet
5. tends towards constipation (sometimes pale poo)
6. lethargy - not wanting to do anything (although again better recently)

negative coeliac blood test. all other bloods (glucose/thyroid etc) normal.
Seen by and discharged from paediatritian and CAMHS. Paed just not interested. GP thinks i've got munchousens.
paranoid mother (me) convinced problems are diet related. she only eats bread/cake/biscuits.

am waiting for dietitian appt. (up to 6 wks wait!)

I had decided to go it alone and just try a gluten free diet. started this monday just to see if it made any difference to her.
Now I just don't know if we should do this or wait to see dietitian.

What are the chances the dietitian will want to investigate my hunch further after a negative TTg test?
Do i really want to push for an endoscopy which may well be negative too?
can't bear the thought of DD having an anaesthetic at all. but of course if she needed one then i'd ok it.

What are the real chances of her being sensitive to wheat/coeliac after a negative blood test?
Am in a bit of a quandry.

and another thing are there any less invasive type allergy tests that might spot wheat sensitivity? (her skin is also extra sensitive and reacts to all sorts)

Help!

[NotSureWatToThink]

Hi, my DD has some of the same problems and she sees a dieatician and peadiatrition every few months, it seems odd they arent giving you the help and advice you need.
I totally sympathise although not to sure what you should do tbh

[tkband3]

The symptoms you describe could certainly all point to coeliac disease - my daughter displayed all of these prior to her diagnosis. I think in children coeliac blood tests are not always fool-proof; the only way to know for sure is to do an endoscopy and biopsy of the intestine.

I'm also surprised that your paed has discharged you. Can you get a referral to a different paediatrician?

It definitely sounds like a gluten-free diet is worth a try - DD1 was a changed child 2 weeks from starting the diet. The only problem is that if it does make a difference and you then want to confirm the diagnosis officially, you will need to put your daughter back on to a normal diet for a good while (I think coeliac UK now recommend 3 months) prior to testing. An official diagnosis is worthwhile because you then get a fair amount of food on prescription and your daughter will then be monitored regularly.

Coeliac disease is such a misunderstood and under-diagnosed disease - you will probably need to be very pushy and stand your ground unless you have an understanding GP.

Best of luck. Any questions re the diet, ask them here - lots of Mumsnetters with lots of info on gf diets!

[NaughtyNigel]

That's the quandry. The GP already thinks i am insane - although i may go back AGAIN!
is the best plan then to keep her on wheat until someone listens to me?
i'm thinking it is. today at least.
I think i'll try to pick a dietitian's brains unofficially at work and try to get the paedatrician to see us again.

[tkband3]

Could you try a private paed consultation - just to get some initial thoughts from someone a little more understanding? You would probably be able to get one sooner than your NHS dietician so that you could decide what to do more quickly. Whereabouts are you?

[girlfrommars]

If she only eats bread, cake and biscuits then the constipation,lethargy, nausea and abdominal pain aren't that surprising are they? And if she feels like that + sugar crash after cake and biscuits her mood will be affected.
Instead of gluten free, could you try to introduce other foods and cut down/out the baked stuff?

[scottishmummy]

tbh, knowing she is selective about what she ill eat now is not the time to introduce a reduced range diet eg gluten free.i presume your aim is a full range of foods, so why omit gluten?imo you need an assessment and programme rather than ad-hoc omission of foods. self diagnosis and management may compound rather than alleviate

British dietetics association this tells you how to arrange a private dietitians

Make sure you only see a Dietitian.A Dietitian is trained to BSC or MSc in human nutrition and management of health and nutrition

others may practice with similar titles, but dietitian is a regulated graduate profession

[NaughtyNigel]

Have been trying unsuccessfully for the last 9 years to get her to eat a wider range of food. you name it i've tried it. she has the same as the rest of the family on her plate at mealtimes and yet hasn't eaten fruit or vegetables since she was a year old. (DD1 eats anything and everything)

yes - i would rather she ate a normal diet. and yes i don't want to be cutting out food from her already rubbish diet. and no - i don't want to be a self diagnosing jumping on the bandwagon - my child needs a special diet just because - kind of mother.
BUT having lived with her being ill since last october and keeping a food diary and watching closely i am convinced that there is a link between what she eats and what she feels. whether this is because she is sensitive to wheat or lacking in vitamins i don't know. that's why i've pushed for a dietitian appointment.

have considered the private route but being a hard up nurse am strapped for cash - although could beg/borrow/steal/ask granny.
how would i go about trying to see a paediatrician privately? i'm in wiltshire btw.

[NaughtyNigel]

P.S having admitted i'm a hardup nurse - can you see that i do have at least some knowledge - and also some experience of how the NHS works. and i'm not talking out of my backside.

[nightcat]

have a look through some of these
links

(dr Kaslow link explains it all quite well)

[girlfrommars]

God you must be going mad with the stress of it all. Sorry if you felt I was being patronising.
I would probably spend the next few weeks trying to find out about all the different private options- nutritionists, paediatricians etc. and how they would proceed (testing etc.) Ask your G.P how you'd go about getting a referral (you'd probably need a letter). As you're a nurse, ask any doctors you know socially who they would send their child to (see if you can get the names of the best people in your local area)
I wouldn't go down the private route until after you've seen the NHS nutritionist. As your cash is limited, I'd try to get as much info as possible before choosing what to do and the nutritionalist might do some of the tests you want.

[tatt]

if you do a gluten free diet it will tell you if that is the problem or not. You then know whether to try and get a formal diagnosis and you have some evidence to try and convince a doctor.

Thise with low IgA are more likely to have false negative tests. Therefore total IgA should be measured but rarely is. The false negative rate is considered to be quite low but quite a few people say they are better on wheat free diet. I'm one of them.

The problem may not actually be wheat but something like blood sugar or digestive enzymes. However if you had personal experience of how much difference it can make you would give it a full two week trial and worry about whether it is coeliac or something else when you have a happier, healthier child.