Is my coeliac DS being glutened?

[skrullandcrossbones]

DS1 (4yo) is coeliac and has been gluten-free for 3.5 months.

Before diagnosis, he had a very bloated abdomen. This has slowly gone down since being gluten-free, but every so often it swells up again for a day or two.

I am worried that this is because of accidental glutening. Are there other things that might be causing it?

Is it possible any of his shampoo or soaps have gluten in them? This can affect apparently....what about school? Playdates? It is common for bloating to still occur for some people...other intolerences maybe?

I hadn't thought about shampoo/soap - didn't realise they were a risk. Will check.

When you say it's common for bloating to still occur, is that because of glutening? I suppose I'm uncertain whether there is a problem we need to root out by being even more restrictive about food outside home, or whether there's another reason. I hadn't thought of other intolerances. He has a lot of milk and cheese, so I'm guessing it wouldn't be lactase/casein, as the bloating is intermittent rather than continual?

Some toothpastes have gluten in them too.

Playdoh ?

I thought no UK toothpaste had gluten, and preschool is making gluten-free playdoh.

If it is glutening, then we will go through everything carefully - I suppose my question is - does this bloating scream GLUTENING or could there be another reason for it? Someone elsewhere suggested it could be due to other food intolerances, and someone else suggested it is just his belly settling down so could be a temporary thing.

Do you all think it's definitely glutening and I need to search out the cause, or that it might be due to something else?

I think 3.5 mths is still early days and as long as you're pretty sure he's not having any gluten then I would just see how he goes. It can take a long time for the bowel to fully heal itself, at least 6 mths so as long as he's not having any other symptoms I wouldn't be too worried. To be honest, we all get bloated sometimes (I know I do!). I assume you're taking the usual precautions to avoid cross contamination like separate margarine/jam and not using the toaster etc?

Thanks freefrommum. Yes, being very careful - actually the whole household is almost gluten free - just some separate stuff with gluten in for DS2 (who is having his biopsy next week - after that we will be totally gf at home).

That is helpful, thanks. We did have an episode last week which I am pretty sure was a glutening - that had more symptoms than just bloating (also tummy ache, pale patches in the loo, feeling ill & lethargic etc.) That was due to a supposedly gf cake baked at preschool (it had sprinkles on it, and I suspect those - will talk to staff about it after half-term).

That's been the only time with symptoms other than intermittent bloating. We are seeing the paed gastroenterologist next week for DS2's biopsy so I will ask her about the bloating as well. You are right, it is still early days, and his gut was severely damaged (Marsh stage 3c) so will take some time for recovery.

We do eat out from time to time - always at cafes which do gf food and we talk it through with them. I am wondering if I should stop eating out altogether for a few months (will disappoint DS which is why we're still doing it).

My DS is very very sensitive and reacts to Maltodextrin (this can come from corn or wheat and as its such a small amount it is classed as GF - well it isnt to him !!!)

I also try and avoid dextrose for the same reason .....

Oh and if he either of these is from wheat or accidental glutening he looks pregnant and his tummy is rock hard

glue and paint at preschool could also be an issue. as, bizarrely, could stickers (my dd reacts to stickers!)

but otherwise, it could be the tolerance levels, as notapizzaeater says - especially so early on post dx. dd is unable to tolerate things which are technically gluten free (coeliac society approved), and reacts instantly. we have to buy guaranteed gluten free stuff from specialist sites, rather than the multitude of things which are available as gulten free in supermarkets etc.

That all sounds very tricky.

What should I do to try and work out what it is? Perhaps I should start keeping a diary of everything he eats/does and note when he bloats?

Should I go to the GP and ask for a lactose intolerance breath test too?

You could but most local health boards don't offer the lactose breath test due to cost - they simply say if you think lactose is a problem, try removing it from the diet for a few weeks. This is what we had to do when DD's symptoms started returning after 5 mths of being gluten free. I wanted her to have lactose and fructose breath tests but was made to feel like an overprotective idiot by the doctor. Dietician suggested removing all dairy and keeping a detailed food diary. It made no difference so she then suggested the 'super sensitive' coeliac diet, ie removing all Codex wheat starch and all barley malt (even the so-called safe levels) from DD's diet. This worked after a few weeks so they changed her prescription as she was having a number of gluten free products that contained Codex wheat starch (eg Glutafin fresh bread). She's now back to her normal self again thankfully.

Thanks freefrom. I don't really want to remove dairy from DS1's diet if I don't have to as he loves milk and cheese, and it will leave rather a hole, plus as a coeliac he needs the calcium. Maybe I could get the test privately?

I could try the super-sensitive coeliac diet as well. Do you simply check labels even more carefully to make sure Codex wheat and barley malt are not included?

I check every single label, I don't buy anything with maltrodextrin in, try my hardest to avoid dextrose. Don't but anything with codex wheat starch, malt vinegar, oats or barley.

A lot of it is trial and error - eg bisto best gravy is supposed to be ok - but it has maltrodextrin in and my ds reacts to it but for some strange reason the caramelised onion version doesn't so we have that whenever we have gravy ... Ds really missed bacon crisps but found some at aldi. He can have

If I am trying something he hasn't had before I wait till Friday night or school holidays

It is a time-consuming business, isn't it. We are already avoiding oats. I think I will try avoiding malt vinegar, codex and maltodextrin as well. I will have to go through the cupboards again...

Ah, sorry might be mistaken re toothpaste. My source of info is in Republic of Ireland ..assumed it was the same for the UK.

Its a nightmare till you find out what ot was - I couldnt understand what was glutening my son either so wrote everything down that passed his lips and tracked down his triggers. Spirit vinegar is OK.

I had similar issues when I was first diagnosed. It turned out to be lactose intolerance & and an intolerance to soy. Both of these were temporary & cleared up after 6-7 months of a strict GF diet, no eating out, no GF substitutes. Was a nightmare to implement but once my gut healed i noticed a massive difference & can tolerate a lot more foods now, so totally worth it.

squinty - yes, I think all UK toothpaste gf. But thatt's a good reminder that if we go abroad, I can't assume it is elsewhere.

I think I will begin the writing down thing. I will wait till next week, as DS2 has his biopsy next week, and then they are both gf, which will be much easier. I think I will also measure his tummy with my tape measure each night. Or is that a bit mad?!

Our consultant was quite dismissive of lactose intolerance when I asked her about it at DS1's biopsy. Perhaps she thinks it will clear up anyway, so no need to avoid dairy in the meantime. I will ask her next week when we see her for DS2's biopsy.

Hi, My daughter has coeliac disease, and we had a similar problem after we changed her diet following her biopsy, After speaking to paediatrician, it turned out that we needed to remove lactose from her diet for 6 weeks also, something about the lactose enzyme affecting the recovering gut wall. We took her off lactose too and within a couple of months she was fine. I'd speak to DR, and be careful though, as we thought dairy free was the same as loctose free, turns out it isnt, dietician sorted us out with plenty of info. Hope this helps. xxxx

Meant to add, that you can buy lactose free milk, cheese etc from supermarkets. x

Thank you! Spoke to gastroenterologist when we saw her again this week for DS2's biopsy. She said that if there were no other symptoms it was probably just the gut slowly recovering and not to worry about it, so will just keep an eye on it for the time being...

I have a question for all of you, did your s/d have a bad traumatic time before they were diagnosed with coeliac. My dd was 15 months and I kept taking her to the docs, they kept saying there was nothing wrong with her, this went on for three months. DD was crying all day, sick, dihorea, tired, massive stomach, white poo, yet they all said she was fine, I thought it was my imagination, no walking/talking just sleeping or crying for three months lost loads of weight eyes were sunken in and dark shaded.
My friends husband came round to visit, he is a doc, I hadnt told him and he noticed straight away her massive stomach. I went to docs yet again and demanded he refered us, he still wanted me to wait a few days. I said No I am not leaving your office until you refer us. so he did,she had scans and xrays, and as soon as she got diagnosis she was a different person over night, she was starving poor thing ate a pack of gluten free biscuits within minutes haha. Started walking and talking within a week of gluten free food. She has got it severley they told us from the endoscopy. She is now 18 and has been diagnosed with BPD, they say it can be from a childhood severly stressfull time, I wonder if thats what triggerd it.
She eats everything now, doesnt care, keeps getting stomach pains badly but wont do a gluten free diet, too old now to make her, her choice eh

busy - yes, it took about a year to a year and a half for a doctor to test my DS for coeliac, despite several symptoms which should have stood out to someone medical. He wasn't as bad as your poor DD sounds though.

That is very sad that your DD won't follow the diet now. I am sure you have done your best to make her see that she will be doing herself bad damage. From what I've read, it is quite common for teenagers to cheat on the diet (or even reject it completely) - and apparently it's also quite common for the external 'symptoms' of coeliac to lessen for a while during the teenage years, which probably encourages them to do this. The internal damage is still happening though.

It's hard. You can't control an 18 year old's diet. DS is only 4, but I already worry about what will happen when we're at that stage.