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Does this sound like it could be gluten intolerance in a Year 8 child (sorry tmi)?

(37 Posts)
isithometime Sun 03-Feb-13 21:28:32

DS tires very quickly, he is currently getting around 12-14 hours sleep a night and 7 or 8 hours after he wakes up he looks awful, puts his pyjamas on and says he needs to go to bed.

He has always had loose stools, normally 4 or more times a day. They are quite pale in colour and often float. He has to go on waking, at least once more during the day, at bedtime, usually half an hour after getting into bed and now in the night too (making the morning visit much less urgent).

His iron levels have been tested before and are relatively speaking low but within the normal range.

Nowadays it has become worse with the fatigue, his need to poo in the morning is causing him to wake after around 10/11 hours sleep and he says he feels awful and needs to go back to sleep.

To get around this he sets his alarm clock for the middle of the night (hmm), wakes up, does a poo, goes back to sleep and is then able to sleep in longer in the morning.

Thats all well and good and an ingenious solution, but he still isnt living a normal life when he is awake, within about 5 hours he is very tired and over emotional.

Do you think this could be a gluten intolerance, the tiredness is long running but worsening, the pooing is long running but worsening

cestlavielife Tue 05-Feb-13 15:41:25

which tests have been done in the "2 years of investigations and being labelled as "unwell" or "in need of medical investigation" cannot be good for anyone, especially a preteen or teen" ??

or are you projecting and imagining for the next two years??

please outline all the tests which have been done and their results .

cestlavielife Tue 05-Feb-13 15:38:27

and if it isnt coeliac it is something esle which needs treatment from propoer medical people.
DO NOT exclude anything until he has had blood tests and please come abck and tell us he has been to GP and tests have been done/ordered. he cannot like being ill. my dd doesnt like being ill or tests but she knows it is part of a journey to get to the cause and make her feel better.

we all getting a bit cross with you op because we are upset on behalf of your DS .... please please please take him now to GP and dont second guess what the outcome will be. ask for nurses or gp to explain why he needs blood tests - it is his fears or yours? if he (or you) has serious anxieties you can also get help with that too .

Charmingbaker Tue 05-Feb-13 12:58:34

Loose stools 4 or 5 times a day and extreme tiredness are not very early stage coeliac symptoms that mean his blood won't show an issue. Your son is exhibiting quite obvious signs of having coeliac disease, if he has coeliac it will most likely show in a blood test. It is not a difficult procedure to have a blood test done. My oldest son tested positive with hardly any symptoms at all, certainly nothing as bad as your son. If it is negative at least you can rule out coeliac.
Also as I said before coeliac can no be diagnosed by bloods alone in some cases (my youngest was diagnosed via bloods alone).
Your son needs you to take control of this situation and help him feel better.

landofsoapandglory Tue 05-Feb-13 09:46:39

What Seeker said. If this was my son I would have had an emergency appointment months ago.

I had problems with my hands and had one simple blood test to see why, it showed raised antibodies for coeliac, so I had to have an endoscopy to take a biopsy from my stomach. I was told by the Consultant, in no uncertain terms, not to exclude any gluten from my diet in the 6 weeks prior to the tests because it could show up a false negative.

Fortunately for me the test was negative anyway.

Please, please take you son to the doctors. He is ill, he needs treatment. He doesn't need kits from the Internet and a mother self diagnosing. He must be feeling rotten.sad

2madboys Tue 05-Feb-13 09:44:53

Along the lines of 'we won't go to the GP because he won't find anything', my DH did a home coeliac test to prove to his mother that he didn't have it - you can guess the rest! In retrospect we both think he had it for at least 10 years before that. Thankfully, he doesn't have osteporosis, cancer, we were able to conceive ok, etc, but just thinking what could have been is quite scary. We have a relative in a similar situation to yours (although symptoms not quite so severe) who is completely burying their head in the sand about this issue. I just want to shake them and tell them what damage they could be doing to their child by not getting it checked out sad

Agree with seeker and others.

I faff around all the time trying to self-diagnose myself - but if it's the DC it's straight to the doctors. They're not going to start poking him around like a lab rat - I know it's worrying but surely it's more worrying not doing anything about it?

titchy Tue 05-Feb-13 09:38:30

Jesus you're not going to your GP because you know they won't find anything? How the fuck do you know that? Are you a doctor as well?

How could a simple blood test possibly make his life worse?

Just make the damn appointment.

It seems to me that you are projecting what you think a GP will say on the situation even though you haven't even been yet! Have you had a difficult time previously? At least give them a chance to treat your son! Most people haven't even heard of CAMHS not to mention thinking their child will be referred for a real physical issue? For the sake of your son please try and get past this and give him a chance to get these symptoms assessed. There could be a very simple solution

seeker Tue 05-Feb-13 09:19:26

Some parenting decisions are tough.

Not this one.

This one is a no brainer.

Ring. Now. You are being irresponsible not to get this investigated.

How mature is your son?

Do you think that if you and the dr explain the options to him and allow him some input and choice he would handle it better?

FWIW I understand y you would be so reluctant to do invasive testing , no one wants to see their kid go thru that!

But you don't have to agree to anythin , you will have time to talk to him , research the test and ask on here for feed back from those who chose to have it done.

The dr may well suggest an exclusion diet first anyway. It might give you the option if it works to put off the more invasive testing til he can be more involved in the choice x

isithometime Tue 05-Feb-13 09:03:26

I suppose i mean, endless investigations wouldnt make his condition (whatever it is) worse, but if they reveal nothing they will most likely have added something worse to his life

isithometime Tue 05-Feb-13 09:01:50

thank you seeker, I appreiate it - some parenting choices are tough arent they

seeker Tue 05-Feb-13 08:56:07

Do you want me to be brutally honest? Well, I'm going to be anyway. I think you are putting your child at risk. You have no idea what is causing his very distressing symptoms- it may be nothing. Or it may be something really serious. Or something simple and easily fixable. The issue is you don't know.

I don't think you are a crackpot- but I do think you are very misguided- what is happening to him now is not good for him. How can getting it properly investigated make it worse? He must have no life at all if he only has enough energy for 7 hours a day. I have a child the same age- he is on the go for 12-13 hours!

isithometime Tue 05-Feb-13 08:46:26

Yes I do realise it is not normal, it has built up to this level as he has got older.

The difficulty for me is that of course I want what is best for him. I know that it is very unlikely that any of the gps first stage blood tests will show anything, even coeliac, but I am not quite certain that the possibility of an endless array of subsequent tests, appointments, referrals and investigations would be in his best interests - when the most likely outcome is that no cause will be found, does that make any sense to anyone? 2 years of investigations and being labelled as "unwell" or "in need of medical investigation" cannot be good for anyone, especially a preteen or teen.

And because it is such a nebulous thing, and because of the many stories I have read on the SN boards here and also elsewhere on the net, I do have a concern that a lack of physical diagnosis will prompt medics to push for CAMHS (which I am 100% certain is not the issue) - and I really do think this would be harmful for him.

I guess I probably sound like a crackpot to some of you, and maybe talking sense to others?

seeker Mon 04-Feb-13 12:48:03

Make him a doctors appointment. Now. It may be coeliac- in which case it needs to be dealt with. It may be something else- it is not normal for a 12 year old to only have enough energy for 7-8 hours before needing to go to bed.

my do was UN diagnosed coeliac for years.he now has osteoporosis. several of his extended family have had stomach and bowel cancers. I don't mean to scare you but it does not always present typically and it is important to at least rule it out properly.

seeker Mon 04-Feb-13 12:33:44

Why haven't you taken him to the doctor? He is 12-13 at the most, and needs you to look after him.

cestlavielife Mon 04-Feb-13 12:32:59

and if it isnt coeliac he needs referral to a gastro and a slew of other tests. you have to do something for him as you say he has always been like this and now it is getting worse. do keep a food diary for a week so you have that to give GP/dietician/gastro too
if it isnt coeliac other conditions can damage gut and he may need an endoscopy. avoiding tests because of squemishness etc really this isnt worth it when his long term health and well being is at stake . you have to do something here . take the poor boy to gp TODAY and get tests and get referrred.

cestlavielife Mon 04-Feb-13 12:28:23

no no no dont exclude anything til he has been tested for coeliac ! it is very important he gets the tests done first .
gp should also order other relevant tests. insist on a coeliac screen before you try any diet.
yes these are symptoms of coeliac .

GO to the GP and ask for thetests, your DS is miserable and this isnt normal life for anyone - he needs to be properly tested for coeliac and other conditions . dont waste time and money on home tests - get gp to order proper tests

the details on why home tests are no good are discussed on coeliac ok website diagnosis I think.also lots of knowledge on allergy section here even though not an allergy.I honestly don't understand your reluctance to include your gp but as I say I'll and cranky today

isithome apologies for the short reply I'm not very well today.your child has classic symptoms of coeilac disease. my understanding is that there are a lot of unscrupulous companies offering substandard testing. the obvious answer to me is to Google nice guidance coeiliac and take your child to a qualified healthcare professional and ask for the appropriate testing.this will also be free. it's not just about whether he had antibodies but also getting the formal diagnosis, checking for other issues caused by it and generally ending that your child gets proper care

isithometime Mon 04-Feb-13 09:55:30

denial - thank you, why are home tests no good and in what way would they differ from a gps blood test for the same thing?

seeker Mon 04-Feb-13 09:55:28

What does the doctor say?

home tests are no good go to your gp

I hope you get an answer soon sad it must be awful
To see him
So ill sad

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