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

ooh....quick glance....they mention defective tooth enamel.....his dentist has commented that his enamel is 'porous'(sp?) and not formed properly!!!

and the excessive wind, bloating, tummy pain, all fits!!! and the irritability

fits my DH also.....

psychomum, everything you have said points to coeliac. Are they not prepared to treat him as coeliac without the biopsy and put him og a GF diet to see how he fares? If they were happy to treat as coeliac then he would get his GF bread and pasta etc on prescription.

how are his iron levels? With coeliacs, vitamin malabsorption, especially calcium (would explain the teeth) and iron is very common. By the time I was diagnosed, my Hb levels were in my boots somewhere, but thankfully my bone density is fine.

FWIW on the rash as well, mine were like lots of little cold sore blisters all very close together, and they were very itchy. i also used to get little itchy hard bumps on my fingers (in the joints on the palm side) and on my knees.

I would urge you to go for the biopsy, at the very least if it came back negative, then the gastro team could start to look elsewhere for a reason for his symptoms.

there is a well documented genetic link. if you are coeliac then your immediate rellies have a 1 in 10 chance of being coeliac as well so it's possible DH is too. He should have a blood test as well. I think my mum was, as the calcium thing fits (her teeth were rotten from a very early age and she had them all removed at 21 ) and her iron levels were always very low (she used to get sent away from the blood donation bus every time it came round!). she never got tested though, even after I was diagnosed.

I've heard loads of people say that their concentration improves loads when going gf.

I'm coeliac and get the rash thing - comes up like little pinhead blisters. Really itchy and you could feel them coming up.

I always had mouth ulcers before going gf, but my main symptom was joint pain.

daisy....he was treated as a ceoliac from being weaned until he was three, as he was so poorly as a baby and the DX him with a milk allergy at 2mths. he was on pregomine (special hypoallergenic milk) until last july, and is now on soya, but his swollen belly and continuously horrid poo was still concerning, as was his lack of weight gain, and so they gave us a celiac diet with a view to a biopsy at 18mths.

the biospy never happened as we had some serious health problems in his sister (DD3) which meant that I needed my focus on her IYGWIM, so they left it.....then when he was three they took him off the diet as we were having probs with his eating and weight and they wanted to get a positive before we went any further......and so we are still waiting.

again, a biopsy was planned for him at 4, and something again happened (oh, I was in a car accident), and then again last july. he was in hospital for 2wks then, but he was very very constipated and his belly muscles had split (with the swelling), so they said to wait.....and again, here we are.

BUT, he is showing clearer signs now (I think) as he is getting very bad joint pains over and above normal growing pains (in fact this morning he is limping his knees hurt that bad) the spots, his belly never goes down (well, never has TBH), teeth (as the dentist pointed out), he is on iron for anaemia, we are waiting for chemical blood results too as they think calcium is a problem, lots of mouth ulcers, lack of concetration, extremely irritable! and wants to sleep more than a 5yo should!!!

I am going to ring docs later anyway and see if they have any results in as yet....tis pointless to go until they can give me any ideas re - supplements, and guess sit and wait.

oh, he also is going to be seeing a medical psychologist as he does have probs with docs now too, and they want to help us help him as the allergy clinic will be an utterly farce if he is not calm......

CMOTDIBBLER....yes, rash is like tiny pinhead blisters, surrounded by angry red skin!

Psychomum..I too have joint pain and poor teeth . I hope you get some answers today, but I do feel it would be best to start him on a gluten free diet or go for the biopsy. This is such a strain on you and him, both of you are suffering. The biopsy can be done without a GA and he will be feeling all woozy and have no idea what is going on..may be worth looking into. Let us know how you get on.

lackadasiycal - yes ds2 had been back on wheat for 3.5 months when he was tested. Still waiting for written results - only spoken to secretary so far and follow up appt is not until August.

In children celiac tests can be inconclusive and enlightened drs can still regard the positive dietary response as a basis for gf diet, but you have to push for it, otherwise they will continue to suffer.
We were so desperate to see improvement, that we went on the diet when blood test was inconclusive. But the response on the diet was totally amazing and the paed agreed.
Subsequently, a genetic testing by a neurologist confirmed that he has gluten sensitive trait (not even celiac). This would have never been proved by any celiac test.
Personally, I think it's cruel to have drs tell you to carry on suffering - you would have to be desperately ill to guarantee the celiac diagnosis (gut is 6m long and they take a microscopic sample). When you realise that some damage is irreversible, that is almost criminal.

It really pains me to hear about people struggling to get a diagnosis like this. I was lucky in that I was being investigated for something else and they did the blood test as an aside, it was positive so I had the biopsy done at the same time as the colonoscopy I was already booked in for, so from heightened symptoms to diagnosis was only about four months.

Especially with children I think if there is any doubt than treating as coelaic is the best way forward.

nightcat, I think it might be the case that the younger you are, the better the chance that the gut will recover to almost normal levels so I'm sure psychomum's DS will get back to near normal if he stays on the GF diet.

I'm sure if you speak to the coeliac UK helpline they will have some good advice for you on the best way forward, and I think that they can take a skin scrape of the rash to get it confirmed that it is DH, so I'd get him to the docs whilst the rash is still there.

shilke, I take it you are going to carry on as before with the GF diet then regardless of the results of the blood tests?

ldc - We're in limbo at the moment. His physical symptoms are not too bad at present - although just had a bad episode of stomach pains over the weekend and has a crop of mouth ulcers. Emotionally he is a wreck and has bad hayfever too. He is in a much better state than he was at age 4, but he'd been on gluten all his life. He's had 3 years gf and I think his body is still in reasonable shape. We will go gf again, but are waiting for the letter about the results to see if consultant suggests remaining on wheat - it's 7 weeks since he had bloods done and I can't beleive how slow the whole process is.

thanks for more responses and no worries about hijacks......all this helps everyone really who have the same worries.

will update later as right now between app's for DD1 and DD2, but DS2 went to school this morning (which he hates with a passion) rather than go to the docs......am making an app for this afternoon tho fingers crossed

xx

In response to those who advocate putting a child on a GF diet without a dx, I personally feel it is better to try and get a diagnosis first if at all possible-rather than putting him on a diet which makes the test impossible. When your child is older, he is much more likely to stick to the diet if he has a diagnosis, rather than just being told he should not eat food with gluten in. He also needs to be monitored as he grows, which is not going to happen without a diagnosis.

Good luck this afternoon Psychomum5. It is difficult to get a diagnosis in children sometimes and heartbreaking while you wait. Your DS certainly seems to tick all the boxes for coeliac disease.

You can get false negatives in the coeliac blood test. If your son is IGA deficient then you would get a false negative as he would not have antibodies to gluten even if he was coeliac. It would be worth checking if they did establish whether or not he was IGA deficient in the blood tests . If you look here:

coeliac.info/suppboard/viewtopic.php?t=2314

you will find a bit about IGA deficiency.

Some doctors will "treat as coeliac" if a child is particularly unwell and needs to come off gluten rather than continue on gluten while waiting for a biopsy. Diagnosis is then on the basis of response to the glutenfree diet and, possibly, the gene test. Alternatively some doctors will fast track for the biopsy if they feel it justified. Hope your DS can come off gluten soon - they do feel so much better, and happier, once off it.

Psychomum, my DD1 is coeliac - she was diagnosed at 2.8 after exhibiting v. similar symptoms to your DS. She was always tired - would nap for 3 hours a day as well as sleep all night, her complexion was grey, she was always constipated, she vomited every 2-3 days and she looked like a famine victim - she hadn't gained any weight in over a year. Although I didn't know it at the time, it is obvious now that her teeth were badly affected by this - her molars in particular are very bad and I am just relieved that these are her milk teeth.

She had a very high reading on her blood test but still had to have the endoscopy/biopsy to confirm the diagnosis. She had a GA which to be honest was far more upsetting for me than her - other than about 30 mins after coming round when she was quite agitated and disoriented, she had a great time in hospital . We put her on the GF diet the next day and within 2 weeks we simply didn't recognise our daughter - she was running everywhere, shovelling food down ...used to make me cry to watch her eat with such relish!

I haven't read all the other replies on the thread, but I would strongly recommend that, whatever the results of the blood test, you push for a biopsy asap - you can get negative blood test results and the only 100% diagnosis is by biopsy.

Best of luck - hope you hear something today.

no docs today....was very very busy with girl #1 in fracture clinic, girlie #2 eye clinic and a huge joke played on DH....oh, and drama too (plus a impromptu lunch with flame)

docs tomorrow I hope, his spots are worse...well.....tummy ones now looking red and scabby, but he has two on the back of his legs, and he is tearful tonight....plus even dancing noticed his belly which almost never happens!!!

anyhoo....thankyou all.....will be back once I know more.

oh, he is not on gluten-free diet right now as we are trying to ensure enough +++ stuff in his blood for a positive test IYGWIM.

psychomum, I am beginning to understand your choice of nickname, lol.

i hope you get a positive diagnosis one way or the other soon enough and then you can start to deal with it.

let us know how things go

I recommend you guys read this medical paper

got an appointment this afternoon with him at 5.30.

he was not at all well yesterday, spots are worse, he now has a cluster on his leg, DH took him swimming as that can help him at times, but he was curled up in a ball after and then explosive poo....and his belly was more swollen than ever! he has had pasta two days in a row tho this week along with other foods that (if he is ceoliacs) would aggravate badly, so all in all, rough week for him!!! I am going to suggest biospy to them, but not sure if to docs later or to wait for the gastro docs???

he is at school today but they are keeping an eye....I am not feeling great myself, but in my case I think mine is stress catching up....I never slow down and with all the kiddies and their different things going on, plus still grieving for grandma....all in all = a rough feeling me (and yes CvQ if you are lurking, I am off to bed in a mo)).

hey ho....all fun here still, and yes, still feeling slightly 'psycho'....

well.....doc not convinced about spots...she says that the spots only ever occur on their bum!!!

BUT

she did listen to me regarding my thoughts and said that she is going to write to his consultant and say how bad this week has been etc.

there were no blood results tho, so she is ringing the hospital in the morning and will then ring me....fab lady

all in all, altho not what I was hoping for (not sure tho really what I was hoping for..), she hasnt dismissed me and she does think that the views of the mum are far greater than the views of anyone else! PLUS, as they have thought he may be ceoliacs all along anyway, she is prepared to put him back on gluten-free as soon as I say regardless of tests....am not going to right now tho as I have mentioned asking for the biopsy to be arranged again.

will keep you updated

nightcat - thanks for that link, very interesting.

psychomum5 - glad your doctor is still listening to you (even though she has got it so wrong about the DH rash). When finally, after 7 years, I got my son diagnosed and we saw the consultant he had three junior doctors with him. He asked why it had taken so long for us to get to him (son's growth was affected by this stage) and I explained the whole process and that despite the evidence I was made to feel like a neurotic mother. He then turned to the junior doctors and said, "Always listen to the mother." It did make me feel better! Later our doctor actually said that DS was only diagnosed because of my persistence!

Hope you can get a satisfactory outcome soon and your DS2 can get firmly on the road to complete recovery.