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 can take a long time to heal, over a year in some people.

are you sure the diet is squeaky clean? Separate toaster, no crumbs in the butter, every single label read? It’s a minefield at first and mistakes do happen.

He doesn't use a toaster but we've separated the butter and chopping board, and we're checking every single label of what he consumes.

I just thought with him being so young we'd see an improvement by this stage, it's disappointing and frustrating especially as it's affecting him mentally too. He hates having to take the meds, he hates dealing with the symptoms. I hate seeing him eat so little. It's really wearing us all down.

I'm sorry this is happening. I am a coeliac, diagnosed 12 years ago and never had to take any medications at all, just change my diet. I never heard of that. Sounds like the stomach is damaged and needs to heal, natural yoghurt, carrot juice and good bacteria. Surely foods that loosen the bowels are better than medicinal laxatives but I'm not a doctor Hope he feels better soon.

He may be reliant on the laxatives at this stage but I’m not an expert. What has his gastro said?

My daughter stopped vomiting pretty much instantly on a gf diet but her joint pain and tiredness took 4-6 months to begin to improve. Probably because these were caused by vitamin deficiencies secondary to the Celiacs. How are his vit levels?

Another issue is oats. Oats contain a protein similar to gluten. Ten percent of coeliacs react to oats. Has he been asked to cut oats (including gluten free oats) out of his diet?

My daughter was told to cut oats out of her diet initially and her symptoms improved. She has now been asked to add oats back into her diet and all of her symptoms have flared up again 😒

I’ve also heard that omeprazole can cause stomach issues in some people as it can stop them making enough stomach acid to aid digestion. I’m not a med professional tho, that’s just some shot I’ve read online.

Is he taking packed lunch to school or having school dinners? Just wondering if he could be being glutened there if their processes aren’t perfect.

I am a coeliac and was given 4 sessions with a dietician to go through things thoroughly and make sure I understood all the precautions. Would have thought this would be offered even more so with a child? (Due to compliance issues) Having said that I think it was about two months into the new diet that all my gastro symptoms stopped so I think it can take a bit longer?

Did they do a full screen for vitamin and mineral deficiencies? Damage caused by gluten affects the absorption of these essentials and it can take months to recover. In addition, his bowel is likely to have stretched and that will also take a while. Our gastro told us it will likely take as long to heal as it took to get this bad!

Thank you that's a kind response. His symptoms of coeliacs are feeling full easily, constipation, reflux and nausea. The nausea has gone but the rest have not yet and only sort of being managed by the medications. He is also diagnosed ASD so has a lot of sensory issues with foods so I must say his diet is restrictive and always has been.

The laxative is Laxido/movicol so just a stool softener rather than a stimulant and the gastro has said children can be on these long term without the bowel itself relying on it as it's not stimulating the muscles apparently.

Thank you but no he has packed lunches, he doesn't eat anything that isn't run past me first.

Thank you for this, we have an initial dietician appointment in December, this was the first appointment available. It's encouraging to hear that it took around 2 months for your gastro symptoms to go away and that we still may see improvement as time goes on, I just wish it didn't take so long as it's having such a bad effect on his mood/mental health and it's horrible to see your child suffering emotionally as well as physically.

Yes they did he was deficient in iron and is now taking iron gummies as well as children's probiotics. I feel like we've thrown everything at it, maybe I am being too impatient. The length of time it took to get this bad has been 8 months 🙈

Yes he's not been vomiting or gagging and his nausea has dialed down drastically, but the constipation and reflux seem to only be managed by the meds rather than stopping via GF diet, but I think from the responses that maybe I am being too impatient?

He is still experiencing some tiredness and dizziness too. Headaches have decreased but not fully gone. His deficiency was only iron I was told and he's been put on iron gummies for this and probiotics for his stomach.

Oh every time I use the g*mmies word they hide my post sorry!

It can take months. I am sorry. It will get better.

Iron is constipating so I suspect this won’t be helping.

Does he eat dairy products? With coeliac disease you can have temporary lactose intolerance too. I'd cut out all dairy if he does have it, for a couple of months or so to give his gut time to heal.

Thank you I appreciate that.

Probably not I suppose!

Yes he would have cheese every day and maybe half a cup of milk each day, we were using it for the calories as he's lost weight. Hasn't gained anything in the 6 weeks gluten free either.

Definitely try cutting out the dairy then, see if he starts to feel better in a few weeks after that (it won't be a quick fix, you have to give it time to work)

I was thinking the same as @Natsku re dairy. You may be able to reintroduce it once his gut has healed, the timing for that will be personal to him. Hopefully you have been directed to Coeliac UK, there are dieticians on hand who may be able to help you sooner than your appointment. Coeliac Disease is a multi system disorder. The list of symptoms is long! My daughter was diagnosed at 10, now 25. Although we noticed changes within six weeks, some symptoms took a bit longer to improve, i think mainly due to the malabsorption issue previously mentioned. Theres a good book by Alex Gazzola, Coeliac Disease, what you need to know. Best wishes, I hope things improve soon.

I am loathe to give up the calories in the cheese and milk, are there dairy free alternatives that would be as good? Thank you for the book recommendation I will look that up on my kindle tonight!