3 year old with coeliac and still has symptoms _HELP!!

[pevie]

Hi. Think I have been on here before but am desperately in need of someone to share who has had similar difficulties, problems. My 3 year old got diagnosed with coeliac last April after several years of hell which mostly included lots of wind, cramp, bowel problems, sleep problems, whining, etc. Anyway, she is doing well within herself during day and putting on weight on gluten free diet and her TTGs or whatever they are called are coming down well. Problem is she still wakes several times in night, rolling about, windy, colicky and sometimes complaining of sore tummy or legs. I don't think we are giving her gluten but she also has associated problems with sugar (not lactose, sucrose and maltose) which we were told to keep giving her as eventually her gut would heal, although we do restrict it.
Anyway, am now feeling very sorry for her and myself as hoped and prayed it would be much better by now.

Any thoughts, stories, TLC to share???

Hi, firstly loads of sympathy as I can't imagine how horrible it is seeing your child go through this.

My mum is coeliac and had been absolutely fine for several months following the a gluten free diet but suddenly started getting symptoms again. The urgent consultant appointment she was referred for took ages to come through (and is only taking place this coming sat - bit of a sore point). During the wait she tried going lactose free which didn't really help and then cut out corn which has made all the difference.

I found the attitude of a lot of the advice online (did quite a lot of research for DM) really patronising - are you sure you're not getting any gluten in your diet? But this is the best place to start, could there be anything slipping through? Is your DC at preschool and could they be getting anything there?

I think with a 3 year old you'd really need to get professional advice before resticting her diet further but apart from trial and error I don't know how you'd establish if there is another trigger besides gluten. Apparently corn isn't that uncommon because it's a relatively similar family and contains a gluten-like protein.

I found this website really helpful and particularly this page. Definitely push to see a specialist though, at least this gives some ideas you can talk through with them.

Big hugs for you and your DC, hope you do get this sorted soon.

Thanks. Its helpful to hear that sometimes there are complications to this and you need to check it out. We are seeing a consultant and dietician but feel that the consultant now thinks we have our diagnosis and things should get better so we don't have another appointment until March next year.

He said he'll do another biopsy if she's not recovered by then. It is good advice to maybe keep a stricter check on whether gluten getting through because even though we quite strict she could be getting it the odd time I guess.

Have spoken to nursery who seem to understand but should maybe check each day just what she is eating just incase.

Thanks again.

There are unfortunately so many ways for gluten to sneak in. Have you got the special book from the coeliac society? With the lists of approved products? You'd be amazed at what gluten can be found in. Cross contamination may also be a problem (same chopping boards etc)

And are you sure you know of all her problems? I've only
recently discovered that coeliac can cause lactose intolerance because of the way it affects the gut lining.

The nursery is probably a good place to start, sometimes not all the staff are food hygiene trained. In theory is it possible someone who doesn't get involved with preparing food for the children could be in the kitchen getting her own lunch and leave crumbs somewhere inappropriate? I think a lot of people who've never had any personal experience think coeliac is one of these faddy eating things and don't get how serious even using the same knife can be .

Might be the play dough. My child has a glutton intolerance and she reacts if she plays with play dough without washing her hands. (she still sucks thumb. Our pre school started making it using different flour as it was easier for them than helping her wash her hands each time.

Jam and spreads can be something that can easily get contaminated. ether get her her own or use a spoon. this may be another place where nursery aren't quite getting it.

Hope you find out what it is soon

Thanks all for your messages.

With regard to points raised. she is only at nursery for a few hours so only has snack there which I believe usually consists of fruit, although they occasionally have cereal which we have told them can only be supermarket own brand rice krispies (have checked this out)

We have her own butter and jam but am thinking we should get her own chopping board and keep away cos we quite often making sandwiches for us and DD1 at same time.

With regard to associated problems, we know from her first biopsy that she has low enzymes for sucrose and maltose and can't break these down well, This has been documented before but isn't as well known as lactose so its difficult to tell how quickly it will heal, although the consultant seems to think it should have healed within 6 months. We give her medication to help break down the sugars as it is virtually impossible to restrict all gluten and sugars. So we try and just keep sugar to a minimum.

She seems pretty atypical which is what is so frustrating. Anyway, is good to share and get your feedback.

Btw. The nursery does make separate playdough as the dietician did tell us about this.

Have you checked glucose syrup - sometimes it comes from wheat and it affects my DS (just diag. 1 yr) - he can't have anything with dextrose and maltodextrin in as he reacts as if he has been glutened. Are you giving her anything with codex wheat in ?? You can get codex free bread/pizza/pasta on prescription

Haribo sweets are listed as GF but they really effect DS so only "jelly" sweets he has now are Rowntrees Randoms

Hi I am coeliac and have my own toaster and butter, and basically the whole kitchen is gluten free apart from a couple of areas where the family know that they can keep their gluten - well away from my stuff. the family use spoons to get jam and other stuff out of jars and also know to stop me using something which may have had gluten on eg a spoon or a knife. there is zero chance of cross contamination and my friends use the same policy.

you have to make it really clear how important it is all the time to be totally gluten free. because as has been said earlier the nursery may not entirely understand the importance. also if someone says to that they think something is gluten free, don't eat it they have to know it is gluten free. Hard with a three year old though.
May be the staff are on the ball but the other children are passing on their biscuits.

Yes I guess we maybe are not as totally on to the cross contamination as could be at times so will maybe make an area of kitchen for her. its quite difficult when you are trying to make lunch for other child too and maybe touch things after touching gluten. But this definatley needs tackled. She seems to either have sore rumbly type tummy with wind or to be kicking her legs everywhere like she has restless leg syndrome. Anyone any experience of this?

Also we do have to watch sucrose and maltose anyway, will maybe take extra care with dextrose and maltodextrin.

Thinking about doing a food diary too.

Pevie,

We tried some supermarket own brand frosties and rice krispies and my son (3) was in pain all night. The tiny amount of barley malt extract (altough much less than in Kellogg's) did not agree with him.

Also my two only have the bread which is wheat free AND gluten free. Most Juvela bread and the Glutafin Select is only gluten free and has codex wheat starch in it and that does affect my boys as well.

Good luck and hope you see some improvement soon

The cereals with malt extract affect me too. nd a lot of people have issues with codex wheat starch until they are fully healed, so you might want to cut that out - Genius doesn't have it and is nice.

Have you thought of trying peppermint water as a drink last thing ? It is very soothing and calms the bowel, so might help

Same here for DD and rice crispies. We used the ones recommended by the coeliac society. They made her very poorly. I know the comments might sound patronising, but it is very easy for gluten to slip in. We don't have a problem with cross contamination, but we do have watch the glucose syrup and malt. Keep a detailed food diary for the dietician and get it checked out.

Just a thought. But does a lot of the gf free food you give her contain Xanthan Gum? Its often used to try and give gf food back the flexibility and stretch that it loses without the gluten.

I'm only asking as I have heard of a few cases of people going gf and still having similar symptoms, then narrowing it down to the Xantham Gum. Apparently it can act as an an irritant to the gut in some people.

Some information on it here and here.

There's more info if you google, but I have to go to bed now. I fear it could be a looong night - My ds1 tested negative for coeliacs earlier this year, but we were advised keep him gf as he definitely has bad digestive reactions to wheat based products, based on his food diary and a four month gf period.

He went to a sleepover party last night and ate pizza and he's been so poorly today, culminating with him just calling me in terrible distress with really bad cramps, diarrhoea and retching. Poor lad, just wanted to be the same as all the other boys at the party.

Just realised how old this thread was. Sorry. I am obviously way to tired to be up mnetting.