Is there anybody with a gluten intolerant child who could help me please?(sorry, long)

[Sybella]

In Feb this year ds1 started a gluten free diet. This was after months of him being generally unwell and not sleeping and was a last resort as I didn't know where to turn.

He had never slept through the night and for the previous three or four months was awake every night for 4 hours (it was always about 4 hours). Sometimes he would cry or scream and be doubled over, finally as he started to talk he would shout hurting! hurting.

Other symptoms included very runny nose, dark circles under his eyes, very slow weight gain and his face looked drawn (iykwim). He had 3 or 4 tantrums a day (hed banging 0 the lot), seemed to ge aggressive and had 'difficulty' being with other children.

Anyway one day after 4 hours awake at night again (and bfing ds2) I took all gluten out of his diet. Amazingly that night he slept thru for the first time. After a few weeks runny nose stopped, dark circles cleared up and the tantrums stopped completely. After a few months he has a rosy glow and a chubby face and the kindest most sociable little boy with no signs af aggresive behaviour. Also his speech which had been slow to develop has come on amazingly well.

To get to the point (at last) through this the pediatrician and dietician have made me feel like an idiot. their answer to everything has been it's a virus. I have carried on the gluten free diet not without their approval but rather they say you can do it if you want. They say it can't be coeliac's because he is not wasted. I have left many appointments in tears not knwing if I am doing the right thing.

What has made it worse is that I took ds2 to the gp with a very bloated tummy and failure to gain weight (he seems very small with a huge tummy and very thin limbs). The gp phoned the paediatrician for advice (he was very concerned) who said that ds1 did not have a gluten intolerance or coeliac's disease so ds2 must have a virus. I feel awful, embarassed and am lost as to whether I am doing the right thing or not. My confidence over ds1's diet is shot to pieces and I think the paediatrician just thinks i am an over anxious idiot. Does anyone have any experience that could help me? sorry this is so long.

Waving back to tangarine (I had wondered whether to post a link to this thread on the diabetes support group, but think that sybella's had some good advice).

All the best Sybella. x

It is the re-introduction thing that worries I don't know how we will cope, especially DH who is a complete ogre without sleep. We do have bread on prescription as I saw a fantastic student doctor who seemed to genuinely beleive me and pleaded my case to the partners. Unfortunately he has moved on and I'm worried that if I push too far they will stop the prescriptions.

Thanks bramblebooks. You are right the advice from everyone has been great and i feel confident again that I am not imagining it and ds1 definately has a problem linked to gluten in some way and possibly ds2 as well. Thank you all.

Doves gluten free flour is all I can say to prescription bread, make your own, much nicer anyway and very economical. I personally wouldn't start re-introducing now when everything is well, wait until he starts eating properly again and is in better health. You're only doing it to prove yourself right, I would wait til much later on.

Do seek alternative advice too, it has turned my dd's health around. I can't recommend a cranial/sacral osteopath enough.

I will certainly look into cranial/sacral osteopathy rebelmum1. Do you have a recipe for gluten free bread? I have tried several times and produced something more resembling a brick than bread.

Sybella - sorry you are having these problems. I know the feeling.

The biopsy is considered the "gold standard" for diagnosis of coeliac disease but some paeds will diagnose and "treat as coeliac" on the basis of symptoms and disappearance of symptoms when on a gf diet. For a gluten challenge the recommended time back on gluten is three months - a long time if a child reacts badly. However, if your DS1 reacted badly (and was seen by the paed - preferably a different one to the one you have seen) they may then be willing to diagnose on the basis of return of symptoms.

You will find lots of help on this board: members2.boardhost.com/glutenfree/

and tried and tested bread recipes here:

coeliac.info/suppboard/viewforum.php?f=1&sid=433904c6c74018c2fe09dc384c52d878

I have heard very good reports of the bread recipe on the Dove's Farm Bread Flour pack (available in most supermarkets) so you might want to try that.

Good luck - when finally we got to the Consultant and I explained the 8 years of fobbing off by the GP despite my concerns, the Consultant turned to the junior doctors with him and said, "Always listen to the mother." Our GP later admitted to me that my DS was only diagnosed because of my persistence!

Hi Sybella - how are you getting on? DS's paed is still refusing to do the blood test and so i took him to the GP last night but.... they refer children to the paed for the blood test.

But after a lengthy discussion, the GP is going to write to the paed expressing our concerns which will hopefully do the trick.

Sorry to hijack, just wondered if any of you had ever heard of a sympton of coeliacs being swollen feet ? My neice is poorly and has been since birth 4 months ago and during several conversations, lamenting the sad tale of yet another 'virus', a friend mentioned that she is sure she heard someone talking about a baby who had been diagnosed with coeliacs - and the baby had been tested for the condition even though he didn't have the usual sympton of swollen fee !!

My neice also has strange marks on her feet - tiny red bumps - usually the outline of a circle (imagine a pen lid or similar pressed into her flesh).

She is certainly allergic to cows milk - even via breastmilk via her mum !

Any ideas ?

Hi KazzaL - HV has been too busy to weigh ds2 for 2 weeks now so am still not sure about his weight gain. I feel that if he still not gaining then at least that will give me something to push on because everyone seems to ignore his huge tummy.

ds1 is seeing a different GP tomorrow for a calcium supplement so am going to see what she thinks re testing etc. Just had to buy a seperate toaster for him because ours was giving him a sore tummy.

icantbelieve - have never heard of swollen feet being associated with coeliacs but then I am quite new to all this! There is a skin condition associated with it though but I'm not really sure about it.

Sorry forgot to say good luck KazzaL, hopefully you will get somewhere. Have found that frustrating as well, we always get reffered to the same people who have 'not you again' looks on their faces.

just to clarify what someone above mentioned about testing for under 5's, we have been told by coeliac UK that ALL the blood screen tests are unreliable (less accurate) in under 5's, this is why some of the LOs are biopsied even if test negative, or if gone Gf then do a reintro test and accept that as evidence if symptoms return.

I know adult coeliacs who have had a negative screen but because of symptoms & family history have gone on to biopsy and been found positive. So the blood screen can have false negatives and false positives but is especially unreliable in kids

OP - from my exp it does sound like your DC may be coelaic, and it disgusts me that worried mothers with sick DC are dismissed and made to feel they are being a nuisance.
You need to see a paediatric gastroenterologist, if GP is unsympathetic you could try asking for referral to a dietitian, we have found them more knowledgable than GPs