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DS about to be tested for Coeliac

(12 Posts)
JustDanceAddict Thu 04-Feb-16 11:32:44

It's all a bit sudden as I took DS (11) to GP for something unrelated and after a quick check of his medical history, current symptoms and being very underweight (he has always been underweight) she wanted to test him for coeliac so we are going for bloods next week and will await the results.
Symptoms are: always been prone to diahorrea, but def worse again recently with stomach aches (had these on and off too).
Headaches/dizziness (this is being looked in to separately anyway and we've run the gamut of tests with no conclusion).
Mouth ulcers - always gets them.
Underweight -can't put on weight easily (but he is tall so is growing upwards).

If he is Coeliac we will deal with it, and if he isn't then I am going to have to try and feed him up as being underweight can bring health issues too, although he is essentially healthy (doesn't get many colds, etc.).

LadyStoicIsBack Thu 04-Feb-16 12:22:28

Does he ever suffer from vertigo? AKA room spinning, not the fear of heights some people think vertigo means (although that said, does he feel wobbley if he is high up or if he has different levels around him - e.g. on an escalator that cuts thru shopping mall type thing and exposed as opposed to straight up and down a la tube?)

This will sound weird, but does he ever suddenly have a grey'ish or blue'ish 'moustache'? Or complain that his head has suddenly 'gone' and grab onto something?

JustDanceAddict Thu 04-Feb-16 13:05:23

I've had vertigo myself, and I'm not 100% sure if he has it. The dizziness is related to movement it seems, but no test has confirmed anything yet, and he has had a lot in one go!! I've tried to ask him if he's dizzy himself, or it's like when you get off a roundabout and the room is spinning, but I never get a definitive answer.
He can go blue round the lips if he's cold ie, after swimming, but afaik he's never had that 'falling' feeling that you get with vertigo (I've not been able to get out of bed with it but never happened to him to that extent).

MuddhaOfSuburbia Thu 04-Feb-16 13:10:56

this really does sound like coeliac to me. It's great your gp is so on it

eating gf is easy, and getting easier all the time

if it is the case that ds has it, he'll be a different boy on a gf diet. And you'll get plenty of help on these boards.

LadyStoicIsBack Thu 04-Feb-16 13:13:52

Your answer begs the question have YOU been tested for Coealiac?

Whilst 1 in 100 people have it, only 1 in 8 coealiacs are diagnosedshockangry as most GPs are only aware of the 'traditional' symptoms (typically rapid onset digestive tract issues and underweight - both of which it happens your DS does have), but the reality is that, statistically, those are the rare symptoms; hence the appalling diagnosis percentage.

Infinitely more prevelant but oft overlooked by GPs who simply aren't trained to look for them are Neuro based symptoms (which is why I ask if you have been tested given there IS a familial link - and he very def sounds like he has it - and your Neuro symptoms could be as you have it).

Suggest you google Dr Marios Hadjivasilliou for more info; he runs the only gluten Neuro clinic in the country.

Do you have any other symptoms yourself (ie fatigue, skin issues, memory changes, visual interference et al?)

JustDanceAddict Thu 04-Feb-16 17:24:41

Have I been tested - no, but I have an odd gut history anyway. I will out myself completely if I say what it is, but suffice to say I couldn't eat wheat as a baby, maybe til I was about 2 because of my condition. It made me very ill (D&V). I don't have any of the other symptoms - am normal weight, no skin problems, not tired, etc. My gut isn't the greatest and I have a lot of wind(!) but I put that down to my congenital issues.

MuddhaOfSuburbia Thu 04-Feb-16 20:00:39

Yeah, get yourself checked, too

I kept going back to the gps with dizziness and vertigo. Also migraines. Got sent all over the place until I got gastric symptoms, then saw a gp who'd actually heard of coeliac disease and the penny dropped

Schrodingersmum Thu 04-Feb-16 23:01:33

He does sound like one of us, symptoms do vary even in families and I suspect that you may well be affected too

While waiting for your blood test please dont be tempted to cut back on gluten as this cut affect the results

As others have said, you will get lots of support here and we are a very supportive community of twitter too

Both my DC and I are all formally diagnosed but I was missed for over 40 years as I have an immune deficiency and dont show the antibodies, this affects 1:8 coeliacs

JustDanceAddict Fri 05-Feb-16 08:29:07

Thanks. I know to keep his normal diet until we get the results anyway. As DH and I were saying last night (was trying to explain it all to him!) - you want the weird symptoms to be 'something' you can do something about, even if it's not great.
I told DS what they were testing for and he said 'no birthday cake?' Bless!

Schrodingersmum Fri 05-Feb-16 10:09:20

Tesco's do a lovely birthday cake! They also do a mini one for other peoples birthdays x

Theres really not much we cant get these days, Domino's Mcdonalds etc even frozen donuts and 'cornettos'

LadyStoicIsBack Sun 07-Feb-16 14:09:57

I would really urge you to get yourself tested too, the wind is a big hint you may have it (& as prev said, it does have a familial link so if your DS has it that does up the stats in terms of you having it).

Even if other than wind you are asymptomatic, any coealiac who remains eating gluten is at massive risk of gut or bowel cancer hence it is worth the - very simple - test just to exclude. If I were you I would not risk NOT getting tested IYKWIM.

JustDanceAddict Wed 24-Feb-16 09:56:56

Just to update, got the results yesterday and he is not Coeliac. Talk about a relief! His blood count and other stuff they were testing for are all normal as well, so we are no nearer finding out why he has his weird symptoms! I think it could all be anxiety related, but I will keep an eye on him and see how things progress. I also will try to give him higher fat foods to see if he starts putting on a bit more weight. Puberty will kick in soon so we will see what happens.

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