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could this be coeliac?

10 replies

asante · 08/03/2012 20:43

My dd (5) has been 'not right' since July last year.

We came back from holiday on an 11 hour overnight flight, and to my mind this is what triggered it.

She goes to bed for 11/12 hours a night, but gets up looking exhausted every single morning. She has pale, translucent , patchy skin with deep, dark circles under her eyes. She looks terrible. Her mood and concentration levels are awful. She's very hard to reason with. She has not grown in height or shoe size for almost a year now (has always been very thin anyway). Also, I think her hair has become thinner in places.

We were referred to a sleep clinic and a neurologist. They ruled out epilepsy and she has had a sleep study done which we are waiting on the results from. When they tested her blood they found she had a very low ferritin (iron stores) level and so has been on an iron supplement for two months. At her last blood test it had risen from 20 to 50. She has also had her adenoids and tonsils out because they suspected sleep apnoea. The surgeon said that her adenoids were massive, but although this has had some benefits (her speech is clearer and she is less restless at night) all the above symptoms remain.

But, in the last six weeks or so she has also been having constant loose stools and stomach pains. Maybe this could be the iron supplement though?

Does this sound like it could be coeliac disease to anyone? I heard that it can be triggered by a stressful event (the long flight and time difference?). There has been no respite from this since July, so it would make sense that something she eats every single dy could be doing this. She eats a very, very good diet....and it is like none of this is getting into her.

Any ideas or suggestions most welcome.

OP posts:
freefrommum · 09/03/2012 09:32

Hi asanta sounds like your poor DD is having a really rough time (and therefore so are you). All the symptoms you've mentioned could well point to coeliac disease although they could also point to a number of different conditions. The low iron levels in particular could be a sign as coeliac disease stops the gut's ability to absorb nutrients and I definitely think you should ask the GP to do the blood test (pretty sure it's called the Ttg test). If this comes back high (over 10) then she should be referred to a specialist and will probably be sent for a gastroscopy and biopsy. It is very important that she continues to eat gluten until all the tests have been done otherwise they will not be accurate. Good luck and let us know how you get on.

asante · 09/03/2012 12:11

Thankyou so much.

She is having blood tests done on Monday to test liver, kidney and thyroid function, coeliac disease and ferritin levels (again).

Are there any other conditions you think we should be investigating? This seems to have both me and the gp perplexed, so any ideas really welcome.

OP posts:
freefrommum · 09/03/2012 12:24

Sorry, I don't have any other useful suggestions but I think if the coeliac test comes back negative maybe you should ask for a referral to a peadiatric specialist to see if they have any ideas. You never know, they might be able to say 'oh yes, I think I know what this is'. Fingers crossed for you both, I know how awful it is not knowing what's wrong with your child or how to make it better.

asante · 09/03/2012 17:20

I've just done the biocard test for coeliac on her and it's come back negative. Does anybody know how accurate it is and if this is the exact same test the doctor will have ordered for her? On the doctor's form she has ticked the box for 'coeliac serology/TTG abs'.

I am totally at my wits end. What is this?? Picked her up from school today looking worse than ever - hardly ate her lunch because her tummy hurt, is moody and anti-social with the other children, a friend stopped me to ask what was wrong with her as she thought she looked noticably thinner and pale :(

OP posts:
BarbarianMum · 11/03/2012 19:04

Well, my experience has obviously biased me but I am currently awaiting diagnosis of anti-body negative coeliac's disease, so unless they can come up with an alternative suggestion I should push for a gut biopsy.

BarbarianMum · 11/03/2012 19:06

Sorry - to be clear -my blood test for coeliac's came back negitive but the gut biopsy was positive.

freefrommum · 11/03/2012 19:11

Just to add that while false positive results are extremely rare, false negatives are rather more common (as in BarbarianMum's case) so it might well be worth pushing for the biopsy.

Mamasunshine · 12/03/2012 08:30

We've just had a negative celiac blood test but have Ben referred on to have gut biopsy due to weightloss, malabsorption etc. they're also testing for everything else it could possibly be. Surely you should be referred onto a paediatrician ASAP as it can take a while to get an appointment?

notapizzaeater · 12/03/2012 14:56

Could she have picked up Gardia ? This is what the doctors were convinced my son had as his also seemed to come on after coming back form a holiday. In his case he is coeliac (biospy confirmed it eventually)

MoreBeta · 12/03/2012 15:05

asante - I too did immediately think of a gut infection while abroad. It is a well known triggger for coeliac in people who have a latent sensitivity that may not have been apparent before. My problems with gluten all started after a very bad gut infection some 20 years ago. They symptoms all sound very characteristic.

Get your GP to use 'choose and book' to get to a specialist who really knows coeliac and is prepared to dig deep. Ignore the negative biocard test result.

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