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.

This! It took me a year to get over the lactose intolerance (to heal enough to be able to process a small amount of dairy - a piece of cheese the size of my little finger). The coeliac symptoms from gluten started to vary. I’d been going to the toilet around 15 times a day and had dropped a huge amount of weight. I worked out that whilst I was using the uk coeliac diary it allowed up to 20ppm whereas the Canadian coeliac diary is truly a zero gluten stance. Even v v small amounts affected me and some food will be in the ‘bible’ for years and then all of a sudden they’re removed.

Have you checked shower gels shampoos and deodorants? The latter is the worst as you inhale as you spray. Dove seems to be generally gluten free but it took hours scrutinising everything in the bathroom. I think there’s an ingredients list you can download on the internet.

Ot just takes a very long time.,.. I hope he’s feeling better soon.

Give it a few months more. Patience is needed. Try stop the omeprazole maybe switch to gaviscon?

My son gets terribly constipated if he gets glutened and it can go on for months if not treated promptly due to impaction. I didn't realise this at first as he goes to the toilet every day, so I didn't realise there was an issue, but basically only the softer stool was making its way out and there was old stool constantly left behind, which eventually caused a blockage, leading to cramps, vomiting, reflux and poor appetite. GP couldn't feel it on examination, maybe due to position but it was seen on x-ray. So I wonder has something similar happened your DS.

Have you tried any of the Ensure juices? Just check re which are gf, but they’re a calorific drink which can provide the energy he needs if solid food is an issue at the moment. There’s lots of different flavours though I think there is limited choice on prescription, but it might be worth looking at in the short term just whilst he’s healing?

Branflakes (Tesco own brand) helped here but that involves milk.
Initially it was pretty much a sushi / shrimp diet with Schar double choc cookies (Waitrose).
Hang in there, 6 weeks is very early days.
Good luck to him and he's lucky he has such a caring mum.

I eat Tesco gluten-free bran flakes, but with hazelnut milk or almond milk when I’m avoiding dairy. You could also have soya drink, but I’m intolerant to that, too.

I have no personal experience of this, but a 10 year old and an 6 year old brother and sister at our church were recently diagnosed with this and it took about 6 months GF before they were back to feeling normal while maintaining a GF diet.

You can get lacto free cheese and milk. My husband is a coeliac and developed lactose intolerance too.

Try lactose free cheese and milk. You will still get the protein.

I haven't looked into these no, are they on prescription only? Is it something I would ask the dietician about when I see them or contact my own GP regarding it? Thank you for the great ideas.

So it's the lactose rather than the dairy? I wasn't sure if there was a difference.

The highest fibre content item I seem to be able to get him to eat are nuts. His fruits are all liquidised (smoothies or fruit juice) as he can't bear the texture of wet solids and he has no vegetables at all, believe me we've tried every one of them! The ASD makes this dietary change even harder.

Thank you so you think 6wks is too early to see much of a change then in your experience? Oh thank you, I love the bones of him and just want my bubbly carefree boy back.

Honestly this! He goes every day with the use of laxido but it's not very much each time and he sometimes is still straining for it. The consultant gave us Pico sulfate but I can't get him to take it 🙈 GP & consultant have both said his stomach is soft but he's due to have an abdominal ultrasound just waiting for the appointment, this is to check his liver as back in March his enzymes were raised and his liver inflamed which we know now was coeliacs disease but at the time didn't know this!

Can I ask when your son is glutened and it triggers the constipation what is your go-to plan of action? And how long does it last?

Yeah its lactose. I just recommended cutting out dairy because I wasn't sure how available lactose free products are in the UK, but if you can find them then give them a try (as dairy free cheese is foul, and if he has food issues already I would not want to risk giving him something like that)

Honestly, we've never had a great plan of action as I didn't realise what was happening due to him going every day but our old GP put him on maybe 4 sachets a day of movicol (hard to remember as years ago) when he was little and we followed the instructions of staying on it until he was doing liquid basically, sorry for description, and then we reduced gradually. Unfortunately for us our lovely GP retired and new GP didn't recognise the signs and had him on just one sachet a day which did nothing. Different GP upped that to 4 I think but couldn't feel impaction and didn't really know what was going on as stool being eliminated was soft. Tried pain management and also stuff for irritable bowel which had the opposite effect and made the bowel slow down. Referred us for x-ray and to paediatrics who recognised the problem immediately and had a protocol for impaction which is basically increasing movicol over 3 days till you get to 12 sachets combined with a bowel stimulating laxative. So introducing a lot of water to the bowel to try and loosen hard stool and also remove it and then you reduce the sachets gradually again and stay on a maintenence dose of 4 sachets for 3 months until the bowel contracts back to its normal size. The flushing out worked but didn't get all of it so there was a second and third try until everything was gone. It wasn't until I read the instructions on the movicol box which said 8 sachets within 6 hours to treat impaction that it actually worked the final time. Nobody had said to do that but it's written clearly at the side of the box. Nobody had used the term impaction. I suppose it's not that common maybe or maybe it's usually when no stool is coming out, I don't know.

He has been glutened again recently having been off movicol for a long time with everything working normally. So it was back to 2 sachets a day, everything seemed to be fine but wasn't and now he is up to 4 sachets a day as there was clearly build up happening again, and I'm not sure the 4 sachets are going to clear it. But at least we know this time what worked before.

The thing is they will all ask lots of questions about fibre and water intake and fruit and veg but it's the gluten that makes this happen to him, he drinks enough and eats all the right stuff but I'm not sure doctors are taught much about this particular aspect of gluten intolerance/coeliac disease. We even had one paediatrician suggest it was all in his head as part of school anxiety. We were just lucky we met the woman who knew the protocol. It's hard for them to understand there can be stool eliminated while on a high amount of movicol but that there is still harder stool stuck there that isn't moving.

I'd try and find out if your DS's bowel is distended and if there is impaction.

He might well be intolerant to lactose and so on also like PPs have suggested.

I'm in Ireland so our experience might be different to the NHS.

Thank you so much for this. I'm due to speak to his consultant in a fortnight from now on a telephone consultation and I will ask if they can arrange an x ray to check for impaction, I don't know if ultrasound would show this?

We even had a GP during testing tell us that coeliacs doesn't usually present with constipation it's diarrhea! They are so badly informed.

Yes, they really don't seem to know about the constipation aspect, I've had dieticians saying there's no way getting gluten 6 months ago could still be affecting him as it would be in and out of his system in a few days.

One junior doctor did suggest an ultrasound would give a better picture than another x-ray but his senior colleague was the one saying it was a mental health problem so that got dismissed. The blockage had moved down behind the pubic bone so I don't think they could feel it though my son was telling them that's where the pain was. I don't know if they know what they are looking for anyway if it's not classic symptoms they've learned about. We were blessed with our ex gp who retired as I suppose he had seen hundreds or thousands of kids over the years and knew what was normal and what was not. Our current GP is so much better now that he has gone through this with us. Another doctor in the hospital said his pain was because he was on too much laxative. Really clueless.

The funny thing is I had had a colonoscopy in the middle of all of it where you drink a vast amount of movicol type stuff in a short period of time so the bowel is empty for examining and both my son and I were wondering why they didn't just do that with him, but I suppose the 8 sachets in 6 hours is the equivalent.

I would definitely say to the consultant that the stool is still very hard even though he is on so much movicol and you're wondering if the bowel is emptying fully and if there is impaction. Have you looked at the Bristol stool chart? Really with my son if he's not at least 4 there's a problem and we have to watch it for a few days to make sure everything is OK and maybe dose up with movicol to make sure.

I mean on the NHS website for coeliacs disease it does say constipation or diarrhea so they really should know by now as GP's!

That's the thing his stool isn't hard at all, it's soft but it's just coming out in dribs and drabs rather than whole stools, it's very frustrating for him and he's straining for even the soft stuff that makes me think something is blocking it?! His pain moves around his whole abdomen so I'd have no idea how to pin point where any potential impaction would be. It's an absolute minefield.

We were told it could take up to a year for DD to feel "normal" Also that she may have a temporary intolerance to dairy due to the damage that had been done, so it may be worth cutting that out for a couple of weeks to see if the symptoms improve. Apologies if this has already been suggested.

Sounds like he is squeezing out soft stool past the harder, older stuff. It shouldn't be a strain to pass soft stool. Make sure you say that, that he's straining to pass soft stool.

And did it take the full year for her symptoms to go? The dairy thing hasn't been mentioned to me by any professionals but has been suggested on this thread so I'm going to try and get cheese and milk alternatives this week to try him with, he doesn't drink much milk maybe half a cup a day but eats a fair amount of cheese.

Yes this is my thoughts exactly and I did mention it to the consultant and their advice was that he needed a stimulant as the laxido was doing it's job to soften but he needed something to squeeze the bowel but the consultant mentioned in front of him that it can cause tummy cramps and therefore he's refusing to take it because he's already suffering enough and doesn't want more discomfort 😔

Maybe the consultant isn't so expert on impaction either... DS did take one stimulant for either two or three nights as part of the flushing out process, I can't remember exactly. He also hates them but he hated being in daily pain too.

Is your DS hypermobile?

DD had some transit studies done - where they swallow tiny shaped markers, all in a dissolvable capsule so looks like a normal tablet. One each day for a few days. Then they x-ray the abdomen to see where they have got to in the digestive system. When she had chronic diarrhoea, there were no shapes to be seen as they went through her system very fast. When she was impacted, you could clearly see the shapes all lodged where they had got stuck.

It was really helpful to see clearly. May be worth asking if they can do this?

Oh my god I had no idea it was in bathroom products?! And so even though they're not being ingested it can still affect someone with CD it being on the skin? (God I hope I'm not being stupid here!)

Can I ask so after going GF were your symptoms not settling and then you decided to try lactose free too?