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12 yar old DD with "virus" for four weeks now - where now? ME? CFS? or?

22 replies

cestlavielife · 27/06/2012 10:03

12 year old dd has been off school for nearly four weeks now complains of mild throatt/nose (but no infection or redness or obvious severe cold and flu type symtpoms), nausea, dizzines, weakness, but nothing really severe; however has not made it to school for nearly four weeks now. GP says virus come back next week... taking piriton for hayfever. but has ha eg two days not taking piiton so dont think is reaction to piriton ..

what should i be asking for?
urine test was fine no sign of infection.
thy "dont like to do blood tests" but i will insist - but to test for what?

is eating small amounts of food

she has coeliac but is onfcompletely GF diet. i dont think is relaed to coeliac.
so maybe some other autoimmune condition?

when does "virus" become ME or ???
what now?

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madnortherner · 27/06/2012 10:18

I have coeliac disease and go through periods of ill health such as this. I think it is possibly due to a compromised immune system but a friend who is a nutritionist told me this, rather than a doc so I must admit I never really know what to think.

Just a thought - manufacturers of gf biscuits have recently started to use gluten free oat flour in the last few months and I have been having a reaction to them. I called the coeliac society and they said I must additionally have an allergy to a certain chemical in gluten free oat flour. Just double check the biccies your daughter is eating to see if they have this ingredient. Additionally, double check everything she's currently eating for (a) a change of recipe or manufacture meaning things she has previously been able to eat are now not OK and (b) cross contamination in prepping.

I think before you start thinking of other things she might have, be really sure it's not coeliac-related because this sort of thing happens to me all the time (I'm 36 and have had the condition since I was 19).

Good luck and my love to your daughter - she must feel rubbish.

PS - maybe worth getting a blood test for anaemia. I get anaemic from time to time and experience nausea, weakness, dizziness through that.

wfrances · 27/06/2012 10:19

i think you need blood tests, but it could be a nasty virus.
ds had one that was so severe they thought he had lukemia
he took months to recover.

cestlavielife · 27/06/2012 10:27

thanks madnorth - would the coeliac screen test pick up if she has had slight contamination?

will ask for irn levels - in november annual screening test she was fine but could have changd since thn.

wfrances - that is a worry :(

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madnortherner · 27/06/2012 10:42

What's the coeliac screen test? Sorry, things have changed so much over the years, it's hard to keep up.

cestlavielife · 27/06/2012 10:52

maybe wrong name - each year they run a tfg? test to check antibodies ? ie it shoul be negative i no gluten being consumed.

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madnortherner · 27/06/2012 11:10

PS if you mean the blood test to check for gliadin, I'm not sure. I was always under the impression that it would, but friends have reported over the years that their doc has said they can't always rely on a negative blood test to rule out coeliac diesase.

Anyway, the screen as far as I know is a one off test. I've only ever had two in my life - one to initially diagnose me (prior to biopsy) and one when I didn't get well and consultant #2 wanted to check consultant #1 had made the right diagnosis. Consultant #2 also of course did another biopsy to prove conclusively.

Do they screen your daughter more regularly then? If so, it would be worth asking the consultant whether the test would pick up such low levels. It's sort of irrelevant though don't you think - that test, because surely it's just a snapshot of what her antibodies are doing at that point?

eg if I was tested today, I bet I'd test pos because I've been away for 2 days with work and am unconvinced the hotel's gf food was uncontaminated (cramps that evening). Whereas my annual appt is in Aug and by then, this episode will have passed.

Sorry it's long, but do you see what I mean?

If I've had prolonged ill health in the past I've made an appt with my consultant by calling the hospital and speaking to the people at his clinic, outside of my usual annual visit times. Maybe you could do that, in addition to asking your local doc surgery to run a test for anaemia. To be honest though, my consultant has never really figured out why I get so ill sometimes. My symptoms when they happen are similar to your DDs (also inc depression for me) and last around a month or longer which is why I'm mentioning it.

It could well be something else of course, as it could with me. But I have lived with ill health and coeliac disease since the age of 19. I'm not sure whether, despite my best efforts gluten is getting into my body. Or whether there's something else going on.

I've got to go now (smear - ugh - then collecting DCs) but I'll check back in once the DCs are in bed.

madnortherner · 27/06/2012 11:11

Oops - took me so long that I cross posted with you. I think what I said applies to what you said because I guessed that's what you might have meant.

madnortherner · 27/06/2012 11:13

Another thought - call Coeliac Soc for advice too? OK really must go. Back tonight.

cestlavielife · 27/06/2012 11:56

thanks madnortherner that is really interesting as dd had a "virus" bout thing last year too which went for about two weeks - tho she had sinus infection adn used steroid spray whihc seemed to help...

but is interesting that you say "my consultant has never really figured out why I get so ill sometimes". it may be something she has to learn to live with ?

will find the report from last years coeliac appt but hey run some kind of anitbody screening plus cbc etc.

next gastro/coeliac clinic review appt is november but at moment i will just ask gp to get the general bloods done at local hosp to rule out any anemia etc

oh and justt checked and the GF prewetts biscuits she been eating do have oat flour .... hmmmm but would that really lead to the long term non specific symptoms ?

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DowagersHump · 27/06/2012 12:00

Has your GP ruled out glandular fever? I was ill for months at a similar age with v similar symptoms and my GP completely missed it - he had sent off my blood to test for leukaemia Hmm

roundabout1 · 27/06/2012 15:59

My dd has been ill with very vague symptoms since the beginning of the year. It started with two bouts of tonsillitis & then an ear infection. Since then she has a very sore throat (red but not infected), earache, nausea, stomach ache, headache, sometimes dizziness, fatigue, the list just goes on & we seem to have a new symptom every few weeks. I know it's a nightmare being told it's a virus and that they don't do blood tests. My dd was tested for gf,anaemia & markers for leukaemia 4 months after this all started after much insistence on our part. They all came back negative & the gp was even a bit I told you so & came out with the "she's probably getting one virus after another" speech yet again. We are now waiting top see a paediatrician. I really feel for your dd, I know its tough on everyone when your child is ill especially for sucha long time.

madnortherner · 27/06/2012 17:21

Prewitts - YESSSS!! That's the brand I was thinking of - they're lovely biscuits but the first time I ate them, it set off exactly the symptoms you've described for this sort of length of time.

The Coeliac Society endorses them and they are gluten free but apparently (according to the Coeliac Society) they contain a chemical that I am additionally allergic to. I wonder if your DD is the same?

At this stage think you should:

(a) Replace the biscuits with something else (eg Kelkin Jaffa Cakes) for now, while you're figuring this out

(b) Do a total audit of everything she's eating to double check there's no gluten getting in (manufacturing methods change, recipes change - eg Walkers no longer possible, some Cadburys choc likewise)

(c) Do a total audit of your storing, cooking, prepping methods (and anyone else who cooks for her) for cross contamination.

(d) Get bloods done, esp for anaemia

(e) Call the Coeliac Soc to discuss your DD's symptoms and the question of the gluten free oat flour to see if they have any answers on both of these for you

(f) Obviously try other angles too

In answer to your question, if she's the sort of Coeliac that I am, yes she will have to get used to being ill. But maybe she'll be better at it than I am - it took me a long time to realise the extent of my illness whereas she is still young, she has you to help her to understand things. She may not be like me though (fingers crossed) - this might be something entirely different, something temporary.

PavlovtheCat · 27/06/2012 18:38

could it be glandular fever?

PavlovtheCat · 27/06/2012 18:39

sorry x-posted with dowagershump

madnortherner · 01/07/2012 21:40

Do come back and let us know how you and your DD get on.

cestlavielife · 01/07/2012 23:45

Still same. On friday gp prescribed antibiotics which on since Friday as throat was red. Also took throat swab.
Agreed to blood tests for CBC thyroid anaemia etc and glandular fever. Did those Friday.

Gets dizzy. On standing. Eats ok but complains of nausea and dizziness .

Maybe sinuses ? Antibiotics might relieve but not seen much change yet is ten day course. maybe they can X-ray or scan sinuses to see if really blocked ?

Looks grey /green colour at times. Not good.... Has barely moved from sofa on weekend. Usually antibiotics produce quicker improvement ? But if not bacterial ?

Anyway will await blood results .

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out2lunch · 01/07/2012 23:48

poor you and poor dd

4 weeks is far too soon to think about me/cfs though

sounds more like g fever or really nasty virus - good luck with blood tests

clam · 02/07/2012 12:06

They wouldn't test my dd for ME until she'd been exhibiting symptoms for around 6 months! In the event it wasn't necessary as it was decided she had migraine instead.
(Have pm'd you)

madnortherner · 04/07/2012 22:07

Oh dear. Such acute dizziness must be awful for DD and worrying for you, I should imagine. I mean, not to mention everything else. I do hope this gets resolved soon for both your sakes.

cestlavielife · 05/07/2012 13:08

she went out ystrday (learnin to lvie with it..)

looking at thins like autonomic dysfunction ...back to p next week.
migraine - what does your dd take clam?

american friend says her dd took amanatadne (?) for similar ...

also florinef

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cestlavielife · 05/07/2012 13:09

back to gp i mean

OP posts:
madnortherner · 05/07/2012 21:21

Have you contacted coeliac society for their advice too?

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