please help......DS2 got spots, he is queried ceoliacs, belly got spots plus very swollen, can you see what you lot think....please.

[Psychomum5]

ok, DS2 is on my profile (well, his belly is), and he has spots which look like allergy to me, but are not responding to piriton. he has had them since saturday....

he has had chicken pox, this is not chicken pox.

he is also awaiting his now fourth test for ceoliac....they think he is, he shows signs that he is (you can see how his belly is very swollen in one of the pics), yet until we get a positive we still need to let him eat wheat etc. I do know that some ceoliacs gt spots, but are these like these that he has????

erm.....oh, they are itchy at times, but not all the time.

all help and opinions gratefully received

no one interested????

Jsut checking spots for you....I am coeliac and diagnosed as a child..back in aminute

I am not sure about the spots as I believe mine where different ie: more like a viral rash. However his stomach looks exactly like mine was.... very distended. I was jsut over 3 and was very short for my age with a huge belly. Is your son of average height..whats his pooh like?

thankyou

he is five, his belly has always been like that.....so much so his ribs are now permentally flared, and he is often likened to little starving children you see on the TV.

poo is an issue......goes from runny to constipated to (rarely) what you could call normal....he is under the gastro team in southampton in fact cos he is so bad at times.

currently very constipated tho and on senna, which is bad on him yet until we get a test come back this is how they want to 'play it' IYGWIM

oh, he is also always been small, now in 3-4yr clothes, and altho growing, tis a slow process.

he is the smallest in his class, and also, as he is a boy, we get trouble with trouser etc staying up, as he has nothing to hold them up......if they fit his swollen belly they slide down, if they fit his hips, they are often a wee bit too short, if we belt him the buckle digs in and cuts him.

and the adjustable stuff is all well anad good, but again, all problems occer as above!

I can't see your picture very clearly but is the rash anything like this?
The picture is dermatitis herpetiformis which is linked with coeliac disease.

I was actually gonna post that my family wehn they talk about me pre diagnosis is tht I looked like a child who was starved....just like you say your son is. Also I was very small my mum told me I always wore my baby sisters clothes and she is 2 years younger than me!!!.

I sometimes now get a rash but it is always on my legs and i do stick to my diet. I always end up making them bleed and they look like them spots on your DS belly..has he been scratching them and thus take on a different appearance..hoep this makes sense cos I make myslef bleed the small rash is now a scab ....I am waffling hope you understand what I am trying to say..

The question about the pooh was because my parents always remarked that my pooh as a child was really offensive smelling and was a strange pale creamy yellow colour and looked all fluffy and floated....tmi sorry ..but it may help you.

HTH

a little......not quite so crusty but teeny heads on like those yes.

oh yes, he is very smell, and when runny (or loose) often like the colour of babies poo, that yellowish colour!

and his poo almost always floats, and often looks 'mucousy' (in my words)

It must be really difficult for you at the moment without a firm diagnosis. I hope the gastro team manage to sort it out soon. If it is coeliac disease he will feel loads better on a gluten free diet, but it is so important to get the diagnosis first, as I'm sure you know!
Has the gastroenterologist seen the spots?

us, he keeps getting ulcers in his mouth to, which made the docs go last appointment and do loads of bloods, which I am still waiting to hear about (2wks today, they said it would be about 2wks before they get them back).

soooooo

no he hasn;t.......this is part of the reason for the pics, to show him on our next appointment, which is in 4mths!

altho....allergy clinic should be sooner as we are waiting for them too now since my milk allergy was confirmed as really bad and I got my epipen....

If you think the rash looks like the one Lavendermist posted it is really linked to coeliac and is treated by a coeliac diet as well. The mucosy stuff is the bowel struggling to cope. With all the symptoms he does seem to have coeliac disease...it really is a very healthy diet and not as difficult now adays to keep to....I had a very limited diet wehn I was younger as absolutely no products available at all. I hope you get a diagnosis soon and your son is feeling better soon too. Let me know if you need any other help.

It is awful that to test for coeliac you need to continue eating wheat that makes him poorly. As lavender mist says..he will feel a zillion times better on the gluten free diet. One more question does he feel sleepy at all like in the day time...another sign for me was I slept so much !!!!

yes, he is often weepy and tired....not every day, but certainly more than he should at five. at least twice per week he crashes out in the afternoon.

he is very hard to wake in the mornings too....sleeps in reguarly, which altho nice, is not normal for a 5yr old boy.

he was on the gluten free diet as a baby and toddler until he was three as they were so sure, and was talking about doing the biopsy but each time, as his bloods were clear, canceled it. his liver tests are often up, plus he is on iron a lot as he is anaemic too.

he is to go on to supplements once I get to the docs for his bloods as his diet is so lacking anyway....he is a very hard eater.....I think because weening was so hard and his weight was so slow, I fed him whatever he liked (within the restrictions of his diet) just to keep him fed and not hungry, so he is now stuggling to eat normally....which until we get some type of DX he has too IYGWIM.

I just wish we knew what was going on as we are in limbo right now....we know there is a problem but the waiting is hard......and his docs have said it can take many many tests to get the positive, especially when he doesn;t eat well in the first place!

maybe I shoudl ring and email the pics to see what they say????

argh.....

in some ways I wish they would do the biospy thing, but then, I don;t want that for him and the trauma of a general (altho slight), unless absolutely neccessary....

would they not be prepared to go straight to a bowel biopsy psychomum? As far as I'm aware that is the only way to get a definate diagnosis. blood tests in children are, as far as I have read, notoriously difficult to get a decent result with.

Your poor DS though . I wasn't diagnosed until an adult as my childhood symptoms were mild. It wasn't till after I had DS that I had a huge flare up, although I have had several outbreaks of DH that were diagnosed as shingles, then cold sores (they were all over my face, neck and ears) and then some sort of herpes rash.

I hope you get something concrete soon, the difference in him on a gluten free diet will be immense....I'm in the process of trying to get more tests done for my DS as although not as serious as your DS, he has always had poo issues (usually pale and runny), he gets recurrent mouth ulcers and is generally pale and listless and can be very weepy and tearful. His forst lot of blood tests came back negative, but I'm not sure what they tested, whether IgA or TTgA. I understand that this can make all the difference where diagnosing children are concerned.

oops, cross post!

Yes, the GA would be quite traumatic, but surely less traumatic in the long run than what he is going through at the minute? And he will have forgotten all about it after a day or two. Having seen DS go through a GA, it was horrible, but although it has been a lingering memory for me, he can't remeber it at all.

I would urge you to reconsider the biopsy.

thankyou all for this, am thinking he is now matching more and more to ceoliacs!

in some ways this might be good that he has the rash as it may mean that his bloods will finally show something???

ho hum, food for thought.....IYGWIM

something else.....his concentration levels are utter pants......school is querying ADD.....could his concentration levels be conected to this???? would explain it all if so!

My ds2 has just had first coeliac test - which came back negative. He has been gluten free for 3 years and was much better. Anyway, I digress, the consultant told us that if he needed the biopsy they don't use a GA, but would make him very dopey and he wouldn't remember it - not as much of an ordeal as a GA. I don't know if it depends on the hospital though.

dopeyness sounds good, altho he does kick off lots just for bloods...

last bloods he yelled and told the whole dept that they were going to make him DEAD as they were stealing his blood!!!

was so embarrassing as all the little kiddies waiting heard, and looked utterly devestated at the realisation of "so thats what they do in there.....they steal our blood and make us dead???"....

oh their little faces

schilke, did you put your DS back on a gluten containing diet before the tests? If not, then it's no surprise it came back negative.

psychomum, have yoou had a look at coeliac UK's website?

am oing to go look now....have looked in the past, but TBH, felt like a fraud as we kept getting negs all the time and I wanted to be sure befoer I started looking anywhere IYGWIM.

also, have not wanted to read too much into it all, as then you can convince yourself even tho nothing is wrong....