Coeliacs in children

[Nogodsnomasters]

Hello, my son has been sick off/on from March, getting increasingly worse. He had a positive coeliacs blood test (after many many other tests), and we've had a repeat test done 9 days ago which we are still waiting for the results of. The day after the 2nd test I put him on a gluten free diet, because my doctors are being extremely awkward and haven't even done a referral to gastro yet (don't worry I am fighting them).

So it's been just over a week on GF and we're not seeing really any improvements, I know it's early days but I've read a lot of threads where people say within days or a week certain symptoms went and then other symptoms sort of gradually improved.

Symptoms at the moment are: lack of appetite, nausea every day, reflux, constipation (using laxido daily), stomach discomfort, easily tired, on/off dizziness, pale, hasn't gain weight in over a year but is gaining height.

I would just like to hear others stories of coeliac children and their progress on the GF diet please. He's attendance at school is shocking and this illness is now taking a toll his mental health, and tbh mine too.

DS was diagnosed at 7 after weeks of losing weight and being sick constantly, it was a terrible time for us all.

When he went GF we didn't see improvements immediately as his small intestines were badly damaged and needed time to heal. There were some improvements after maybe 2/3 weeks, he stopped getting worse. It took 3 months for him to start turning a corner and put weight back on.

It's going to take time for him to heal so be patient.

I have heard that some children who are affected with constipation (DS was the other way with it going into detail) continue to need to take medication for it at times. So I'm not sure of the impact of the GF diet on that side of things.

I do think that in order to get a diagnosis you might have to go back into gluten for 6 weeks then they do a biopsy to confirm. DS didn't as he was losing weight so quickly the consultants bypassed it and diagnosed on bloods and symptoms alone. I'd ask your doctors as I'm not sure on the guidelines for kids these days.

DS is 14 now and 6ft 3 and thriving, any questions about anything DM me, more than happy to help at this awful time.

Best wishes.

Coeliac UK are a fantastic resource, they used to have a helpline you can ring with any questions about anything. They also used to pair newly diagnosed families up with established coeliac families for support.

They have dieticians you can talk to I think. I used to ring them because I was so stressed and was worried I wasn't reading labels properly. I remember ringing once as I was worried there was gluten in strawberry jam, looking back it sounds ridiculous, it's a super stressful time.

I'd give them a call and have a chat, I bet they can put your mind at ease and will know the correct route for diagnosis and referrals. DS sees a consultant and dietician annually and his diagnosis was completed by the consultant, he has no GP involvement apart from prescriptions if needed (sometimes iron or Vit D courses and the GF flour/bread). The GP got the blood test results then sent us physically to the hospital and the consultants picked it up from there so not sure on the referrals side of things.

Thank you so much. My ds hasn't lost any weight but hasn't gained a thing in a year and is getting significantly taller so it's becoming more obvious that he's skin & bones.

Glad to hear that it took 2/3 weeks for you to see any signs of improvement and that it's not just us, it's such a worrying time isn't it? And it's so horrible to see them feeling ill every single day, it's breaking my heart.

I'm hoping they will diagnose based on the two blood tests and symptoms because I'm not putting him through this anymore, he's a shadow of his former self physically and mentally, he also has autism so the change is effecting him massively.

Sorry, not kid-experience, but I was diagnosed as an adult two years ago. My numbers were 95 and then 97 two weeks later. No biopsy needed, bloods were enough. Hope it's the same for your son.

Hi DD15 diagnosed age 12.Just by blood test as levels so high.It took al ong time for her gut to heal and was nauseous for a while after.Its common to be lactose intolerant up to a year after diagnosis.She still is lactose intolerant though and it took a good year to get to the bottom of that so she was still nauseous and bloated although very careful with gluten.

In Coeliacs Disease the damage caused to the stomach also makes you lactose intolerant until the body has time to heal on a GF diet. Switch to lactofree cheese and milk for now whilst he heals. Butter is naturally lactose free.

Join Coeliacs UK and use their food checker. There’s hidden gluten in so many foods.

Also get him on a good multivitamin as he won’t have been absorbing anything from his food.

Thank you, I have started him on sambucol this week as I'd heard good things about it. But maybe I should throw in a multivitamin too?

I've not heard or been told about coeliacs causing lactose intolerance, I'm shocked! He's not a big cheese eater but loves yogurt and milk - one his staple foods. His diet is already so restrictive because of his autism, which is making the switch even harder.

How long did it take for you to feel better after going GF?

Lactose intolerance article from coeliac uk. The gastro team my DD saw after diagnosis explained this to us. You can get lactofree yogurts too.

My DD is on these Vitamins. Vitamins and probiotic were also recommended by the gastroenterologist. She is on these Probiotics. The vitamins are affordable but unfortunately the probiotics are not cheap. Having coeliacs disease is expensive!

Our gastrologist said hard dairy is low in lactose (butter, cheddar) but wet dairy high (milk, yoghurt etc) and she definitely struggles with wet dairy.Easy to get lactose free milk, yoghurt, vegan ice cream etc. It shouldn't be for ever just as your child's gut heals .But yes costs more - definitely expensive being coeliac as @TheGirlattheBack said (going to buy those chocolate probiotics you linked to).Your GP should make a gasto and dietician referral at point of diagnosis. We have only just been discharged from the dietician and its been 3 years.

Yes it could definitely be lactose intolerance as well. There are plenty of lactose free products available, so it’s no big deal.

Damage is caused to the villi in the duodenum not the stomach. That's why low iron is a symptom. Secondary lactose intolerance should resolve after about 9 months of being lactose free.

@Nogodsnomasters it does get better.We don't really think about DDs coeliac disease now as we are so used to it.Seperate toaster, chopping boards and colander is my tip.Super careful with whear crumbs in the house. She has her own bread bin and her own cupboard .Her peanut butter , butter etc is her own.Even if we don't dip a crumby knife into things guests might.As mentioned join coeliac UK and use their scanner. Watch out for hidden barley in chocolate, marmite etc.We just send her with a GF LF pizza to friend's houses now as it's easier for everyone.She is super careful as she knows ot makes her so ill. Definitely a learning curve at 1st but she grew a good foot and started puberty about 6 weeks after cutting out gluten so seeing them thriving makes it better.

Thank you for this. We have already put his GF items into a separate cupboard from the rest of the food, I've gone GF with him as support. He doesn't really use butter as he's not big on sandwiches/toast but I'll keep that in mind about having a separate tub for him. We've bought an air fryer that's to be used for GF only.
Would you say it was 6 weeks before symptoms settled down for your daughter?
I just seen to have this thought in the back of my head - "what if it doesn't work, what if it doesn't make him better?" I know it's my anxiety but it's a scary time watching him suffer.

We saw a massive change in her energy , sickness and growth in a few weeks.She was anaemic and it took a while to get her iron up though.She couldnt tolerate the prescribed iron tablets though so we used gummies twice a day and spatone which was much slower. It took much longer for her to get fully better though as we didn't take out the lactose and that caused her nausea, stomach cramps and an upset stomach until we did.The terrible wind stopped very quickly and I always know if she has been glutened if this happens.The change from cutting out lactose was pretty much instant so I think if we had done that initially she would have felt better very quickly.All this was led by her dietician and consultant.We had to go to a private gastro as the NHS one was pretty poor and wouldn't accept she was still feeling ill as her coeliac bloods were getting better.She also has some other health conditions though -stopping gluten worked instantly for my coeliac FIL and he had no problems with lactose.

Anyone else have any personal stories of how long it took on the GF diet to see improvements with coeliacs disease. We still haven't received the 2nd test results but have however finally got an appointment with paediatrician on 15th Oct. He's been GF for 18 days now (spoke to the consultant on the telephone who knows this and agreed if 2nd test results are positive he would happily diagnose based on this thank god!), I know still early days. I can sort of see the symptoms being less extreme but still none of them are fully gone. School is still a massive struggle.

I think I felt less tired about 2-3m after. Have heard it takes up to two years to fully recover from the effects of a non-GF diet in a coeliac though.

It takes several weeks.
And be scrupulous buy separate new toaster butter and buy gluten free labels to mark toaster butter etc to avoid cross contamination

Get advice from coeliac UK for school

Do they offer advice regarding anxiety and symptoms in school? It's not so much about school getting on board with GF they're very helpful and we do packed lunches anyway.

Both my sons have coeliac disease. One was symptom free, just diagnosed off the back of his brother. It took the symptom son about 3months to start being symptom free. He was lactose intolerant for about a year, but he’s back on ‘normal’ milk now. Neither of them have grown much though. Think they are just late to puberty 🤞

My GS aged 4 went GF in May after blood results off the scale .No Biopsy necessary. He started to gain energy after about 2 months and has now gained 2.8 kgs .
He is on iron supplement because he was severely anaemic .
The villi in the duodenum needs to heal and become efficient again and it is a slow process.
We have a much more energetic little boy but still quite cautious generally, and very switched on about what he eats .

Refer to a play therapist or art therapist. Ask gp