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.

It’s something the gastro consultant warned us about on the day of DD’s endoscopy. That we might find as her villi healed from going gluten free that she became lactose intolerant. She’d never had an issue with lactose before but within a few weeks of going gluten free she was vomiting badly when she ate lactose.

I have often wondered if there as a link. Thanks

Found this on the nhs website

If you have untreated coeliac disease, you're more likely to also develop lactose intolerance, where your body lacks the enzyme needed to digest the natural sugar (lactose) found in dairy products. Lactose intolerance causes symptoms such as bloating, diarrhoea and abdominal discomfort.
Unlike gluten in coeliac disease, lactose does not damage your body. But you may get some gut-related symptoms when you eat foods containing lactose because you can't digest it properly.
Lactose intolerance usually gets better once you change to a gluten-free diet and your gut has recovered. Until it gets better, it can be effectively treated by not eating or drinking dairy products that contain lactose. You may also need to take calcium supplements – dairy products are an important source of calcium, so you'll need to compensate for not eating them.

For those who've chatted with me about the lactose intolerance, we've moved to lacto free milk yesterday, I was looking into the cheese bit and the cheese we use is mild cheddar which according to this picture is 0.1g of lactose in it so similar to the level of butter which I know a lot of people with intolerance can tolerate. Do you think we'd be okay continuing to use it at that level? I've searched the last 2 days for mild lacto free cheddar but only able to find mature! I did buy a block and got him to taste it but it was too strong for him. The ASD is making all these dietary changes so difficult!

I think it’s worth trying with the normal cheese but in a few days if no better try lacto free cheese

Hard cheese like Cheddar and Parmesan are supposed to be lower lactose than soft ones. I bought some Arla lacto free Cheddar at Sainsbury’s the other day which tastes no different to normal to me. I’d say it was about medium strength though, not as strong a the cathedral one. I’m not surprised at all about the gluten-lactose link.

I’m really loving the promise bagels and English muffins at the moment by the way. They’re a bit pricey but hold together like non gf bread.

Update: DS has been lactose free for 4 weeks now, GF is now at week 11. Still taking 10mg Omeprazole and 3 laxido per day. We discovered that a GF cereal he was eating had "gluten free oat flour" in the ingredients and after seeking advice from coeliacs UK it seems even gluten free oat products should be avoided for the first 6-12 months, so we now have to check all gluten free labelled products for oats/oat flour 🙈 it's never ending.

Our dietician appointment which was supposed to be on Monday past was cancelled and rescheduled until January so we've still yet to see one.

Saw the consultant on the 6th Dec who weighed and measured him, he's grown 3.5cms and gained 1lb. Appetite level seems to be improving but stools are still all over the place, still pale with dark circles, still tires out easily. He's now on childrens magnesium supplements as well as the iron. Consultant agreed this was worth a shot as they can help soften stools further along with contribute to helping fatigue.

Thank you to everyone for your advice on this thread. I think this healing journey is going to be far longer than I ever imagined.

Some people can never tolerate gluten free oats, some enzyme or something. Also the cereal isn’t Lucky Charms is it? That’s meant to be gluten free but American gf standards are different to English and Dd can’t tolerate lucky charms and that’s quite common.

It was asda's free from brand, a cereal called "Choco squares".

Sounds like it will have been the gf oats then. But steer clear of Lucky Charms for sure. Their testing procedures for gluten levels are very dubious.

We stopped them a week ago so hoping and praying that knowing this info now will help him turn a corner, pretty sure it was the only thing with GF oat flour he was eating but he was eating them quite frequently!

Hello!!! How are you and how is your little one!? I feel like I’m in the same boat of anxiety and worry as you! My daughter was diagnosed 11 weeks ago now, initially bounced back but she’s had a rough winter with all the illnesses, currently treating her for constipation over flow and I be also decided to take her off dairy ass she was having awful stomach pains for the past two weeks. She’s still so fatigued and I’m finding it so hard to be rational, at the moment I don’t see how she ok be going back to school next week she’s exhausted and just turns pale

i wonder if my daughter is experiencing this/ no vomit but serious fatigue still 11 weeks in

@Chazzalazza I'm the same person who commented on your post about my ds10 🤣