Please help those with coeliac or avoiding wheat/gluten...

[wangle99]

As previously posted DS is treated as coeliac due to symptoms although tests negative. We have been doing fine no contamination and its all under control however over the last couple of weeks the symptoms have come back and we cannot work out why. It can't be within the food we are giving him or cooking as i have been checking EVERYTHING.

Currently removing his cutlery from the cutlery drawer and keeping it in a sealed container (am wondering if perhaps crumbs falling into the drawer), we are being more scrupulous before giving him food ie washing our hands even more carefully than before.

Is there anything I could be missing? He has fruit at break at school - I wonder if someone could have something on their hands and then he's eating fruit with it on. Am clutching at straws here but I cannot work out what is causing it and am so frustrated.

Also now removing food that has 'prepared in a wheat area' as before that didn't seem an issue but now am thinking perhaps it is.

Appreciate any ideas even if they sound silly to you, am getting desperate!

Thank you

Are you sure he has coeliacs? If he is testing negative then it is highly unlikey. Often when you come off whaet and gluten initially it has a good result becuase a lot of people have difficulty digesteding it - doesn't mean you have coeliacs - this is quite different from an intolerance. You sound as if you are being really careful so it is unlikely it has anything to do with coeliacs.

Was your son eating gluten when he was tested for coeliacs?

I have posted before about this, he has been tested twice both times negative, before both tests he has been fully back on wheat and gluten, following the advice of coeliac uk he had more than the recommended amount (which at this moment I cannot remember).

His paediatrician was gobsmacked that the test was negative and suggests when DS is older he has a biopsy as I am not prepared to put him back on wheat/gluten at the moment due to his age (he is 6).

The dietician says its unlikely to be a simple intolerance due to the severity.

At the moment I just want to know if anyone has any ideas where he's getting contaminated from - I know there is a big issue of parents 'playing up' to their child symptoms ie intolerances are said as 'allergy'. DS has food on prescription due to the severity of it - therefore he is treated as coeliac.

Anyone have any ideas for me??

Common culprits - jam/mayo/marmalade/butter where someone is putting their crumby knife in, sensitivity to deglutenised wheat (often in gf bread on prescription), playdoh, accepting sweets from someone at school (esp ones that used to be safe or similar to safe ones), stuff that is gf in one size but not another (like fun size mars bars vs normal ones), and shared toasters.

Sorry to hijack the thread but do you mind telling me what his symptoms are please?

There is a possibility my dd2 has coeliac and we are in the process of getting her tested, gp is dragging his feet! and I really could do with more info from someone with a child with coeliacs.

Thank you

I use a separate knife and chopping board when preparing food, have a separate tub of butter, and don't put any gluten free bread in the normal toaster.

My mum and nephew are coeliac and recently discovered all toothpastes aren't gluten free!

Mum does seperate butter/marg and toaster too.

Hope he's better soon. x

Have you had him tested for intolerences to other foods? Could be more than one food causing problems, taking gluten out allowed body to recover partly and now is fighting the next issue.

I have used private nutritionist to test (using Asyra and York tests - alternative tests have been slated on here before so for the record, standard tests are not always conclusive and do not always confirm what exclusion appears to prove). Excluding a huge range of foods and rotating loads more made a world of difference to my DS, his body healed and can now cope with an almost normal diet.

Whats happening at lunchtime on school days?

Where is he eating/what is he eating/is he using school plates or cutlery/could he be 'sharing' any food with friends/is he supervised?

What a nightmare, esp as you are clearly being fastidious...

as a complete aside, because of half term coming up, you have a chance in the next week or so to see ifs a school day issue or not. If you do everything exactly the same during this week, but the symptoms lessen you at least know its something at school, otherwise the suggestions about other allergies/ sensitivities might be relevant.

Thank you for your comments, I haven't looked for a few days as had a nasty feeling this was going to turn into a intolerance vs. allergy debate so went and hid lol

Had no idea about toothpaste, do they have ingredients on the tubes/boxes? Am trying to think if we changed toothpaste recently.

We have separate tub of butter and cough chocolate spread recently separately jam too. Use the same chopping boards but they are plastic - wonder if that could be it? Different toasters and toasted sandwich makers.

He does eat his lunch at school with his other packed lunch friends and he does know not to share food but I do wonder about food 'flicking' or generally being waved around and crumbs.

We already avoid the wheat starch in the gluten free bread as he reacts to that too.

Like mentioned am going to use half term to monitor every morsel that goes into his mouth (and of course what comes out the other end lol!).

In reply to Ladygooga his symptoms are diarrhoea that is fatty and foamy, tummy pain which can vary in severity (his school called 999 so bad one day), lethargy, tearfulness, evil behaviour, very bad wind (worse than our greyhound and that is saying something!), before he was diagnosed he had a very bloated tummy as well, had dropped off the centile charts for height and weight and I think that is about it!

Hi wangle99, your ds reminds me slightly of mine, my ds started off avoiding wheat and gluten and then last January started getting worse again, we managed to track it down to lactose as there is apparently a link between them, since we have started to avoid all 3 it is now 1000x better.

It might be an idea to keep a food diary for half term see if there is an indication of what might be causing it.

Really Littlemarshmallow? DH is lactose intolerance so perhaps you have a point. DS absolutely adores his dairy produce think he'd be more gutted to cut that out than the gluten/wheat! Will bear that in mind though thank you!

I was thinking the same as littlesmarshmallow there on lactose.

I have IBS and had to go on a food exclusion diet.

I stopped eating wheat/gluten and my symptoms disappeared for a bit, but then came back with avengance (sp) The doctors were baffled and every test came back negative. Then one day my mum said to me that when I was a baby I had to be fed soya milk (although now that is linked to IBS and all sorts of other issues!!) so she wondered if it was dairy.

I now have the lactofree milk, which is a god send, and a year later to allow my system to settle down, I can eat some forms of wheat/gluten products just not so much that overload my digestive system!

But I miss chocolate!!!!!

Had I known about the lactose thing 15 years ago, it would have saved to much pain and loo trips!!!! :D

I've been told by a cousin that poster paint and playdough at school can cause problems for her (intolerant, but not coeliac).

Hope you work out what it is soon

Poster paint??? Argh I had no idea.

Does anyone know if there is a list anywhere of non-food stuffs that contain gluten? I think I'll contact coeliac uk perhaps they know.

It doesn't help that DS sucks his thumb so things that aren't normally ingested probably are with him and he has no intention of stopping sucking his thumb yet!

Also wangle, if it is lactose you need to be super careful over the wheat / gluten free products your ds gets as milk is very common in some especially as I have found out prescription ones.

When I was trying to work out what it could be, we went and got toaster bags from poundland so that all bread for ds is toasted in that to reduce contamination. Also ds has his own cutlery drawer and up until I had a dishwasher he had his own sponge and tea towel for washing / drying dishes. I also use separate baking trays for when I am cooking things too. It is hard but when ds is well it is worth it.

If you want to ask anything give me a shout.

LittleMM DS has his own cupboard at the moment but his own cutlery drawer (just put it in sealed container but not ideal) think will move cutlery and utensils into 'his' cupboard and also get more baking trays. Think perhaps may have been a bit slack there as occurred to me today the tray I cook chips on DH has occasionally put something in breadcrumbs on argh.

Do you avoid things that have written on them 'prepared in area that sometimes has wheat' or words to that effect! I noticed some dairymilk now has that warning on it due to a change of factory. I'm just not sure how anal about it I should be!

I have got super anal about it more so last year because I was reaching the end of my tether with it all.

My ds doesnt have a dx of coeliac infact his biopsy came back neg 18 18months ago but the consultant has no idea how / why as he has such severe reactions to each thing.

The other thing to be careful of is wooden spoons I use these for cooking but I have written on certain ones so I know I can only use them for ds.

Eventually you do find a happy medium where you know it will be ok, but while they are still sick it is hard.

Horrible for you - I really empathise.

I'd suggest bioresonance testing. Worked amazingly for my son (similar a&e situation re. stomach a couple of years back). Looks at dietary stuff but also what is going on with the mineral/vitamin/hormone/toxicity etc. etc. levels in the body - if your son is deficient and not-absorbing properly then the elimination of problem foods in itself isn't going to be doing all that much.

I found this out myself after eliminating gluten/dairy/sugar/caffeine for eczema over months with symptoms fluctuating but essentially getting no better. When I was tested there were various issues with environmental/hormonal/toxicities etc in addition to dietary stuff. Took a few months but cleared up completely once I undertook recommended treatment programme.

Wangle, You have probably already checked this but just a thought about chips .The majority of frozen oven chips have dextrose in them . This often comes from a wheat source. I only get chips for my son that say Potatoes, salt and oil on the ingredients list. I was just reminded about that when you wrote about the tray you cook chips on!

kingprawn - I do check for wheat in chips but didn't realise that dextrose is an issue as well. I read all the coeliac uk info but must have missed this - will check chips when I get home today!

another suggestion - have you considered trying him with peptizyde enzymes? They help digest both wheat and dairy. They are not a substitute for the diet for those with severe problems but can help with minor contamination issues.

The other possibility is fat in his diet. I have a similar problem to your son and know that if I eat anything with much fat in I will pay for it.

Not sure if dextrose has gluten in so may not be an issue for coeliacs, but it definitely can have wheat in and my son reacts to both wheat and gluten.

I would look at dairy myself as lactose and other dairy intolerances are def linked with gluten problems - I will also say that it is entirely possible to have dreadful reactions to gluten and wheat foodstuffs without having coeliacs and that coelians is an autoimmune disorder caused by gluten intolerance.

My two dd's have it, one also with diabetes (another allied disease)If a biopsy is testing negative it is not coliacs but that it not to say that the symptoms are not severe even worse sometimes. My older was asymptomatic until her diabetes control went to pot all of a sudddne and my younger dd was symptomatic sa a very young child and then got a lot better. The older can tolerate odd mistakes with the gluten free thing (not that we ever intend them) but the yonger is seriously ill if a crumb passes her lips.

I am just mindful to make the distiction between horrible food allergies/intolerances and coeliacs - people think coeliacs is an allergy it is not. Having a child with awful problem with food is horrible (been there with both my dd's as little ones) particularly when you cannot get to the bottom of it - personally i would food and allergy test. Coeliacs on the other hand means that the lining of the gut completely destroys itself (hence there being a definitive blood and biopsy test) and in the long term causes many bowel and intestine cancers, so to be honest I do get a bit resentful when people lump this all in together. The immediate problems might be the same and very distressing for all but the long term effects are very different.

If you want to know what's in what get hold of coeliac uk, they have a definitive list including those things with codex wheat starch in too.

tartyhighheels - I appreciate the resentfulness you must feel when its lumped together. DS has been tested for allergy and its negative.

The paed said to me that reactions aren't usually as severe with non-coeliac gluten intolerance, however, your DD is obviously an example of that not being the case. We always say DS is treated 'as coeliac' purely so people ie his school take it seriously.

He was home yesterday as teacher training day at school, MIL said he was 'a bit loose' and I know for a fact nothing passed his lips that I hadn't given her. So it does look as if dairy could be an issue. Going to Tesco later to get some more dairy free items (of course DH's dairy free butter as ordinary bread crumbs in argh lol) and then we'll give it a go!