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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

isithometime Sun 03-Feb-13 21:29:54

oh and he doesnt report bloating or stomach pains

It could be. Something is definately wrong for sure. Not a people will show all symptoms of a condition which is why sometimes these things can go undisguised for weeks months even years. First things first go to drs explain all the symptoms and push for testing. Start a food diary so u can document exactly how bad the symptoms were and if they are better/worse after certain foods. White poo is often a sign of anaemia which could be the problem on its own or related to another condition. I would see a dr ASAP though as it sounds miserable sad

Undiagnosed ( damn auto correct )

neolara Sun 03-Feb-13 21:36:50

I'm afraid I've no idea, but I just wanted to say, poor him. That sounds awful. What investigations has he had?

isithometime Sun 03-Feb-13 22:11:48

no investigations so far, am wondering whether to try an exclusion diet for say 6 weeks and get him to the doctors if no improvement in that time?

The trouble with that is , the test if they do it, requires gluten in the system. It is however an invasive group of tests so that is something that will need discussing with the gp and will also require extensive research as often exclusion doesn't prove anything due to continued accidental ingestion. as gluten is often hidden in many things.

I would see a gp first, get an appointment ASAP. If that goes well, ie they agree to test and refer to a dietitian etc then hopefully your ds can be On his way to feeling better.

However if they r dismissive and refuse to consider it then that's when I would seriously re consider just doing it. But do research first as you want to be sure to be 100% sure that he is not accidentally still eating. X

isithometime Mon 04-Feb-13 06:48:04

Well, I dont think it is very likely to be full coeliac as the digestive symptoms are not severe enough? And I guess therefore that even i I take him to doctors any blood tests for that would be negative as well.

Is frustrating really as I dont think I will get anywhere with the gp (I mean I dont think they will find anything) and dont want to subject him to shed loads of random appointments and tests under consultants to try to pinpoint something that doesnt have an obvious cause.

There is obviously something not right, I just dont think it will be found right now as there are 1000s of obscure and unusual illnesses, and unless and until some other very clear symptom arises there isnt much to go on even though his quality of life is very much affected.

Which is why I wondered about exclusion since full coeliac seems unlikely? Any idea how long it would take to repopulate your gut and blood with harm if you restart gluten after being gf for 6 weeks?

tilder Mon 04-Feb-13 07:06:34

Poor boy, I would definitely take him to docs. Excluding gluten from your diet is a huge decision and I would really get everything else checked first. Good luck.

Charmingbaker Mon 04-Feb-13 07:26:17

My DS1 has just been diagnosed with coeliac, similar symptoms - loose stool and VERY tired all the time. My DS2 has coeliac so we pushed for testing which came back positive. In DS1s case the tiredness was caused by an extreme vitamin D deficiency. I definitely think you should get him tested and get his bit D levels tested as well. Coeliac disease can take years to become 'full coeliac' but blood tests will shoe raised antibodies before that time. I started the testing process on my DS1 before he had any symptoms at all (DS2 had just been diagnosed and NICE guidelines are that immediate family members should get tested regardless of wether or not they have symptoms). His first set of bloods came back 'inconclusive' ( not clear) in October. He had no obvious symptoms at all at this time and GP wanted to ignore them, however I pushed for a referal. He saw a gastro consultant just after Christmas, 2 weeks before appointment he started getting loose stools and tummy aches. Gastro tests confirmed likelihood of coeliac which was confirmed by endoscopy in January. I feel we were lucky, we knew about coeliac because of his brother so we managed to get him diagnosed before he was 'full coeliac'. DS1 is now 3 weeks into his gluten free diet and is like a new child.
If you think it is coeliac disease push your GP for a test.
The initial tests are nit at all invasive.
First you will have a blood test done via GP. If this Comes back positive you will be referred to a gastro consultant. They will do more detailed blood tests. If these come back positive then either your child will be diagnosed via bloods alone (if levels of antibodies are high enough) or also have an endoscopy to confirm diagnosis. My DS2 was diagnosed via bloods alone, DS1 needed endoscopy. Nothing invasive is done until blood tests show there is a problem.
In the meantime it us very important you do not exclude gluten from his diet. If you do any tests you have will not be accurate.
Go and see your GP and insist on a blood test.

Charmingbaker Mon 04-Feb-13 07:29:54

Just to add it is recommended you have gluten for 6 weeks prior to any testing. However, once you have excluded gluten from the diet you system becomes far more sensitive to even tiny amounts of gluten and it is not easy to reintroduce it back into your diet.

isithometime Mon 04-Feb-13 09:01:29

Well, i know this wouldnt give the whole picture but i have ordered gluten iuetolerance antibody home test. I guess this would be the same as the gp blood test, and i expect it to be negative, but lets see.

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

home tests are no good go to your gp

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

What does the doctor say?

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?

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

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

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

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.

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.

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 12:48:03

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.

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 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!

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