Coeliacs disease

[Nogodsnomasters]

Hello, I've posted a similar thread to this in children's health board but did not get much of a response so thought I'd try here.

My DS10 has been diagnosed with coeliacs disease 6 weeks ago. I sort of thought we were seeing small improvements but tbh I think it's more the medicines they've given him that are helping the symptoms rather than the actual diet doing anything (meds are 3 laxido per day and 10mg Omeprazole). I tried to reduce the laxido to 2 sachets this week and his appetite decreased again (saying he feels full up despite not eating much) and stomach pains back. I'm going to put him back on 3 sachets from today but I sort of thought by the 6wk mark we would see some sort of difference on diet alone.

Everything I read online says people were feeling better within days-weeks. Anyone any experience either themselves or their child with coeliacs at the beginning of journey?

Thank you.

I'm not sure if he's hypermobile no one has ever mentioned that to me though.

Did your DD have to swallow the capsule whole? I'd never be able to get him to do that. I think if the ultrasound doesn't show anything and we're still in the same position I will definitely enquire about a transit study thank you. What did it show about your daughter, did it result in more specific treatment or anything?

The first time it showed fast transit and she was given imodium and diet changes to slow her digestive system. At some point it all switched and the next study showed really slow transit times. I think she went from diarrhoea to constipation with overflow (which can look like diarrhea!). At one point they prescribed senna and I asked the nurse politely if that should be taken with the imodium or instead of 😁

The transit study capsules are not huge and my DD was around three when she did the first one. There was an option to split open the capsule and mix with yogurt or something I think.

Re lactose - I had a medical practitioner in the family that mentioned lactose intolerance first, than researched and printed me off various reports and they said I was likely coeliac. The battle was being fobbed off as an adult as ‘it’s only ever diagnosed in children’. Gp said he would only refer me if I was sick the instant I put bread in my mouth. So I lied, got a referral, had six biopsies taken during endoscopy and guess what - coeliac diagnosis!

Re bathroom products and make up (not an issue for OP) it’s anything that gets into GI tract that triggers it. I was being thorough with the shower gels as I was checking deodorant and perfumes, and powdered make up - can all be inhaled so that’s why I checked those. Gluten is everywhere under different names. Bear in mind it’s a natural product. But sometimes my skin will react if I use a moisturiser with vit E (derived from wheat) which I assume is my body’s way of warning me.

For any female coeliacs - bare minerals is good at confirming if you contact them, and they confirmed their products are all gf.

Hope that helps.

Sorry, just to add, it was slow burn with me and I didn’t notice the weight loss to start. By the time I was diagnosed I was seven stone and very poorly, and I did look like a gust of wind would break me. Everything hurt in my body, no energy is an understatement, I had v v low body fat and my b12 was non existent. Dangerously low levels of iron. Dr kept prescribing tablets and it was consultant that explained lack of absorption as the villi in small bowel were very damaged. So everything I needed had to be an infusion into blood stream. I can’t tell you how much better I felt after two iron transfusions. If I ever accidentally get glutened now (decades later) it doesn’t give me a bad stomach but my joints feel like they’re wrapped in barbed wire. And it does happen, because things like this do, at first I stopped living a normal life and was worried about eating out but when I’d healed I felt a bit braver and now I eat out all the time and am just careful - but accept that things happen.

If you go to Italy it is brilliant as they have a really good awareness of gf and pretty much everywhere offers gf pasta and pizza and it is heaven for a coeliac!

Thank you so much, the option to split open would be much better, he could handle it in yogurt!

Were these tests offered to you after her coeliac diagnosis then or did you have to push for them? Sorry for all the questions.

Yes it was a slow burner here over the course of 8 months of symptoms but now looking back before these last 8 months we can see other smaller things that we can now put down to coeliacs as well such as his pale skin, bags under eyes, frequent headaches, they were attributed to his vision/glasses etc. it's only been since the gastro symptoms began that we've stumbled down this path.

Lactofree milk is lush - it tastes like cravendale so is very much a real milk flavour. The brand does spread too and cheese and the cheese is okay. I recommend dove farm gf flour too. And if you cook quinoa you can flavour with gf stock cubes. Warburtons do gluten free versions of tiger loaves etc - pricey but tasty as a treat. Not sure if they use real milk though.

Pizza express used to do a gf and lactose free cheese pizza which was nice as it feels ‘normal’. Just maybe when DS is feeling a bit better and fancies something different? It’s just going to take time and finding what he likes to eat in the meantime.

If you need to go down the disimpaction route ERIC are fab:
https://eric.org.uk/childrens-bowels/parents-guide-to-disimpaction/
Talks through each step and what to expect and more clear about when known been successful and how to proceed, rather than asking a potentially not well informed healthcare professional who may advise stopping laxatives when achieve diarrhoea, which can often result in incomplete disimpaction and having to re-do.

Does he have a sore mouth? That can be lack of b12 (from the absorption issues). Or crack in corner of his lips? Poor boy, I’m hoping he’ll be feeling better soon but I think it may be a few more months but as you adjust to checking labels and he gets to eat safe foods and drink he will start to improve slowly. Can you keep his food in a separate cupboard? And just keep everything clean - crumbs on the work surface is a nightmare as they get everywhere (my H is not the cleanest when he makes normal toast).

Another recommendation for thr Lactofree range here. I'm coeliac and have remained lactose intolerant for the 10 years since diagnosis, so I have been using it for a long time. Also try some own brand lactose free products; Tesco does tubs of Greek yogurt while Waitrose has feta and halloumi if there is a branch near you. Hopefully your DS can still get his cheese.

I promise that it does get easier.

Just remembered that Tesco also has a GF and LF pizza in the frozen free from section. Can't remember the brand, but the section is fairly small, so you should spot it easily.

@Nogodsnomasters it took around 8 years to get a diagnosis for us! A biopsy at 3 was inconclusive but we were recommended to go gluten free anyway. The damage done was such that it took years to get to being well again, mainly due to other issues that complicated everything.

The transit studies were done during preschool and primary.

She is an adult now and things are much better in the world of paediatric gastro!

He does have frequent sores in his mouth this year yes. No cracked lips though thankfully.
We've given him his own separate cupboard and I've gone GF with him too as support, DH and foster daughter are still eating gluten but everything is cooked separately (separate air fryer etc, separate butter). DH has now had the blood screening done last week too and is waiting for the results as he has b12 & folic acid deficiency and is always exhausted.

Did the lactose intolerance cause the continuation of coeliac symptoms even after you'd gone GF? I wasn't sure if lactose intolerance could cause constipation and reflux or not!

Oh my god 8 years of that suffering, poor girl and poor you having to fight for her - it's mentally draining all of this.

I avoid Warburtons g-f bready products because they contain preservatives - Calcium Propionate and Potassium Sorbate aka E280 and E282 - that I’m sensitive to.

Your DS may not be, so it won’t matter, but most of the M&S free from range doesn’t contain those preservatives, including their Tiger bread which I love toasted. Check the label every time you buy it as they change the ingredients, eg some of their flaky pastry cakey/bun range now does.

Whilst upsetting, it’s good he got a diagnosis quite young. Will prevent any further damage being done.
M&S have quite a good made without gluten range. Their spaghetti bolognese ready meal is delicious. Also their special flakes cereal. Promise bagels at Tesco taste like normal bagels.

I would 100% cut out lactose for six months and then try reintroducing it. Had to do this with Dd after she’d been diagnosed with coeliac and it made a near instant difference.

It did for Dd, though her symptoms were vomiting and diahorrhea. But others will get different symptoms I guess.

Have you noticed a link between gluten and lactose intolerance? Curious about this.

Echo the lacto free suggestions. I was told by dietitian to go lactose free while gut healed and it did really help. It does get better so just hang in there!

Gf bread is more edible toasted! Schar and promise are not bad though. You say he eats a lot of cheese is it bought grated? I think the coating they use to stop it clumping has gluten in - I always get ill from it so just buy block and grate yourself to be safe! Gf pasta doesn't take long to cook! Overcook and you get sludge. Napolina do a nice gf pasta range. I've only found it in morrisons but it's worth hunting for it!

Early days are the hardest but it will soon become second nature. It can take 1yr for things to settle but the good thing is he's on the gf diet so is already on the right path to feeling well! Hope he feels better soon

I still had gastric issues after I was gluten free but I think it can manifest differently for people. I was running to the loo a lot (never constipation!) and having reflux until I went lactose free. Also I'd wake up tasting sulphur, which often continued all day. I've read that is linked to lactose intolerance too.

Thanks I haven't tried m&s yet as there isn't one handy to me but I can go further afield for it if they have a good range. We've been using a mixture of Asda and Sainsbury's as they're nearby couldn't find anything he liked in Tesco.

Yes you're right, this could have went on for years and tbh if he hadn't been hospitalised in March I think it would have so in a way we are lucky to know now and to prevent things from getting worse. Just feels like I had a mostly healthy boy until the start of the this year and now he's not himself anymore 😢

Thank you, definitely going to find lacto free cheese and milk this week! The cheese we currently use is a block yes and we grate it at home or just slice it.