If I give you the symptoms will you diagnose?

[BeeEm]

So perhaps i'm clutching at straws or being a mad paranoid overprotective mother - BUT -
here's the symptoms
9.5 yr old DD.
constant nausea
depressed
clingy
tummy pains
behaviour 'issues' temper tantrums school refusal
poor diet - v picky eater
constipation
strange pale poo sometimes
behaviour always better after being persuaded to eat something
not anaemic, thyroid and liver function normal
v skinny
GP has referred to Paediatrician and CAMHS (school nurse thinks is all depression)
Now i know you lot can't tell me definitively that A B or C is the matter but would anyone think i am barking up the right tree or just barkin?

since when has school refusal been a sign of coeliac disease? Possibly the depression that can go with it could cause that but bullying at school is far more likely.

my DC have total intolerance to dairy & all cow related stuff and had most of the symptoms you describe.
The best thing i can suggest is start a food diary - now - and absolutely everything goes in it. then if you can spot a trigger from it you are doing well, though the next step is to do (hopefully with GP or dietitian help) some elimination of 'suspect' stuff and then re-introduce them later after a good break, but only introduce one tiny thing at a time. with a bit of luck if you record all food and all symptoms then you can be a mum-detective. I have had to do this with all three of mine...
good luck!

What do you mean Tatt? I think it is the physical symptoms combined with the other issues which led to the suggestions of coeliac disease. Certainly not school refusal alone!

Again I must stress that you absolutely should not eliminate gluten from the diet of a child prior to a coeliac test as it will otherwise not be reliable.

I mean that all the physical symptoms could have a cause other than coeliac disease. Physical symptoms as described without school refusal would have me doing the food diary/avoidance of gluten. But school refusal means there is something else wrong and that could also be causing the physical symptoms.

Blood tests are no fun for kids so I don't believe you should dash into them. The blood test would not be totally ruined by removing gluten from the diet as long as its put back in again before a test.It might not be necessary if other issues were addressed first.

It has to be put back into the diet for some time for the other tests to be done though-several months I believe. And speaking as someone who has a DS whose coeliac disease was not diagnosed until he was in his twenties, I feel very strongly that if a simple blood test can help diagnose it then it should be done. (I have two DSs who are coeliac. The oldest suffered lack of bone density and years of feeling unwell which could have all been avoided. Yes blood tests are not pleasant-but they are over in a second. Undiagnosed coeliac disease can affect you for life.

Well I agree with tatt here. Whilst checking for physical causes is, of course, important, I think what tatt is trying to say is that an emotional cause is just as likely and that's something that can be addressed right now without the need for needles etc.

FWIW, although we have a strong history of allergies in our family, her symptoms sound very like me when I'm worked up about something or incredibly nervous.

Does she have friends at school? Does she want people round to play? Have you spoken to her teacher about stuff that's possibly going on at school that's putting her off going?

I also think it's incredible that she could be labelled 'depressed' when she hasn't even spoken to anyone about it yet.

I count 9 symptoms of coeliac disease. Afaik constipation and pale poo are not usually associated with emotional issues. I would try to eliminate one thing at a time - have the blood test, and if negative look for another cause (despite the remaining very small chance of false negatives). It is much harder to get a definite positive or negative test for a mental issue!

they are if she's not eating properly though. She's said all she eats is 'bread and biscuits with the occasional chocolate or potato thrown in'.

It is worth getting the test eventually but the way the poster has written her post is that she has all her hopes focused on a medical cause when she could be trying to address the school issue NOW (whilst persuing the medical stuff at the same time iyswim).

sorry, that sounded a bit harsh. I'm sure you are doing something but just be careful getting your hopes up about it being medical.

I would agree with the food diary too because if it isn't coeliac, you may want to reduce certain foods that seem to make her worse.

But other than that, I would go along with what tatt has said.

Do you really think i haven't already been in to school, investigated the possibility of bullying, considered unhappiness/depression as a cause on its own and tried to get her to eat properly?
I would rather have a happy child but at the moment i'm just trying to find any cause for her unhappiness.

As a matter of interest, BeeEm, what made you wonder regarding you DD and Asperger Syndrome?
As I said my DS5 is coeliac and has AS; he has an extremely limited diet (even before the coeliac dx). By the way, I would definitely pursue the request for a blood test for the reasons I have given earlier.

had considered the aspergers after a few very tough days with her - she's incredibly strong willed and will go on and on and on about feeling ill all the time. she's also a bit obsessive about thngs like certain clothes. Alythough she has really good friends she doesn't seem to care much about other peoples feelings/can't empathise with others. She takes things very literally - can't quite get irony or sarcasm and will acuse people of lying to her because they've said something she doesn't get. She's fairly bright but won't try anything new easily as she doesn't want to fail ever. She's very clingy - doesn't want to leave me or home despite being foul and abusive when she is with me. And she has huge explosive temper tantrums.
Sorry for the rant - bad morning.

Copied from coeliac uk website:

Symptoms of coeliac disease may range from mild to severe, and can include:

Bloating, diarrhoea, nausea, wind, tiredness, constipation, anaemia, mouth ulcers, headaches, weight loss, hair loss, skin problems, short stature, depression, infertility, recurrent miscarriages and joint/bone pain.

DD's cousin has also recently been diagnosed at the age of 12. He was refusing to go to school, mainly because he felt so ill and tired all the time, but I think he also had behavioural issues which have improved since his diagnosis.

BeeEm, when I found out about DD1's coeliac I was almost pleased - I was finally vindicated and I was not simply a neurotic mother and she was not simply a fussy eater, but there was something wrong with my child. I had been given the complete brush-off by all the medical professionals I'd seen since her problems started, which with hindsight was about a month after I introduced gluten into her diet when she was being weaned. I bow down to all the mothers who deal with far more challenging dietary issues in their children and am grateful that following a gluten-free diet is relatively simple and if she does eat gluten by mistake as a one-off, it is not life-threatening.

It is horrid to know that there is something wrong with your child but not know how to put it right. I hope you get some answers v. soon. In the meantime, if you need any more information (GPs are notoriously badly-informed on coeliac) don't hesitate to ask.

BTW, I am no expert on coeliac, I only have my own experience to go on and as others on this thread have said, your DD's symptoms can point to a number of things. But if you can eliminate this one thing with a simple blood test, then you can start looking in other areas. Best of luck.

Hmmm. I would raise your concerns with the paediatrian (I think you said you had been referred?) All that does sound very familiar! Two of my 5 DSs have an AS diagnosis (and two others almost certainly are AS but are in their twenties and choose not to be assessed.
Sorry you had a bad morning!

Hi BeeEm

So sorry this is happening to your dd. It sounds awful.

I agree that it would be worth doing a coeliac check.
I would also insist on a test for Type 1 diabetes. If she's thin and strangley moody as you say, and her mood picking up after food .... really worth checking. It's an easy test. In fact I would bring in a urine sample to the doctor if I were you.

Diabetes is perfectly manageable, but really dangerous if it isn't bieng managed or goes undiagnosed.

My friend's dd was diagnosed with T1 diabetes after months of similar symptoms to the ones you're describing. At one point she was up in the middle of the night yelling abuse at her mum and demanding baked beans. My friend (who's a nurse) was looking into all sorts of possibilities and eventually discovered it was diabetes by which time her dd was quite ill. (She;s on the mend now.)

If it's diabetes (my ds has it too) she's likely to be very thirsty and weeing a lot.

BTW there are some links with coeliac and T1 diabetes and a fair percentage of T1s are also coeliac. Both are auto immune reactions.

Surely she would be really ill if diabetes were a possibility - although i do have to admit to looking that up on tinternet last night. see I am a mad paranoid munchausenesque mother!

Not necessarily. There's what's known as a 'honeymoon' period where the islet cells in the pacreas are still working but dying off gradually. So the onset can be slow.

It's worth a test because it can be so easily checked and you should rule it out.

well GP thinks i'm insane already so may suggest it! seriously though - I will cheers

It's not very helpful to have an undiagnosed problem and a gp who thinks you're insane. Can you see another doc, or do you reckon he/she will glance at your notes and also conculde insanity?

If you take a urine sample all they need to do is dip a little stick in it there and then and you'll know staight away.

I'm a bit obsessed with diabetes though as you can imagine.

Dont be fobbed off BeeEm. I only wish I had been more insistant when I used to take my DS1 to the GP when he was little. It was only at my own insistence that they eventually did a blood test when he was in his twenties. He was anaemic (again) and in the past they had just treated the anaemia and sent him on his way, instead of investigating the cause of this and his weight problems!

Sorry to hikack this thread-Spidermama, you don't know if www got a paypal number for 'Radley' re that hotel?

Oh I just remembered - along with outher bloods a while back they did glucose - it was a random one not fasting - and it was o.k. so that would rule out the diabetes thing?