Coeliac disease

[Jabbitt]

Hi all, my 7yo DD has been diagnosed as having coeliac disease (2 years into diagnosis now). She was poorly recently and, after a blood test to check TTGA levels, she was 18 (she should be 0 as we have cut all gluten from home). Turns out, she was likely taking in gluten from school dinners (school promised all meals would be GF and made in GF environment but DD told us that she was eating her food when it was taken away and given to another child and she was then handed their food. There have been other instances that have come to light since now). She went onto packed lunches almost 2 weeks ago after seeing GP and finding out that her levels were still raised. She was experiencing stomach aches (awful pains under ribs), diarrhoea etc.

she’s been having packed lunches now since we saw the GP who told us she was still taking in gluten. She seemed to be much better but today she has said she’s had stomach pains again and loose tummy.

my question is, I know that following accidental glutening, the stomach can be set back with recovery, but how long can symptoms go on for and can they come back even after going GF again?

thank you!

I was told up to 6 months for full recovery. Something else you might consider is whether she may have developed any food intolerances- temporary lactose intolerance is very common when the gut is damaged fe.

We were told by our daughters dietician that ttg usually goes down within six months. I have read a couple of studies though that contradict this. One study I read said that where there is total villous atrophy, only 40 percent of children make a full recovery over a 2 year period.

Does she eat oats still (the gluten free kind?) About ten percent of coeliac children also react to the avenin in oats, which is similar to gluten.

Have the rest of you gone gluten free? Could it be contamination? Does she go anywhere where there is flour or baking occurring? Does she use playdoh?

I hope she feels better soon poor thing!

Thanks both. @Icannoteven she doesn’t eat oats (she’s always been such a fussy eater but has never liked oats / porridge). We are all GF as my son is also coeliac, it’s just DH and I who aren’t (it comes from my side of the family as pretty much every female relative of mine on one side is coeliac).

@DisquietintheRanks yes, my main worry is lactose intolerance because she already won’t eat many things and having to cut out dairy will just be another obstacle to navigate.

Since going onto packed lunches at school, DD said she feels much better and the stomach pains and diarrhoea seems to have improved. its such a horrible condition, isn’t it 🙁

Yes and no. Its a big shock to be diagnosed and a huge learning curve foodwise and it complicates things like going out - but, when you crack gf, she will be totally healthy.

@DisquietintheRanks definitely, I just can’t believe how few people have heard of it. Once, not long ago, we went into a restaurant and asked the waiter if they were able to accommodate a coeliac and he said “yeah, we may be able to. Kids can be so fussy can’t they” - almost as if coeliac was a lifestyle choice.

The levels should drop quite quickly on a gluten-free diet. Gluten doesn't hang around very long in the system. If they're still raised I'd keep on looking for gluten still creeping in somewhere - own-brand colas, some squashes, 'may contain' products, etc.

There is a variant of CD called non-responsive or refractory coeliac disease to be aware of - https://www.coeliac.org.uk/information-and-support/coeliac-disease/about-coeliac-disease/refractory-coeliac-disease/

Has she been discharged from her paediatric/gastroenterologist consultant? If so, get her referred back. GPs aren't usually clued up enough on CD to be the primary healthcare contact until she's sorted and symptom-free on a GFD.

CUK have a helpline and often have a talk-to-a-specialist sessions online on a Friday lunchtime. There are also a few good peer-support groups online - but also a few dreadful ones, so always research for yourself any advice given.

The other key thing is that it's not always gluten. Coleiacs get the same tummy aches everyone else does, as well as the gluten ones.

Thanks @DogInATent thats really useful. DD doesn’t drink anything other than water / odd glass of milk or apple juice. We are religious with checking food items (we were reliant on one stage on the CUK app but were warned that some items could start changing ingredients and the app may not be updated to reflect this change).

She (and DS) are both under a consultant, who will see them once yearly (we saw the consultant at Christmas and will see them again this year). We are also under the care of a dietitian at the hospital. I have to say, the care has been great so far. The GP is good although, to be fair, he doesn’t have much expertise with coeliacs. For instance, apparently lymph nodes can stay raised for a long time in a child with coeliac / be prominent - the GP believes this may be why my DC’s nodes take an age to go down following a bug.

with regards to tummy aches etc, you are so right. Poor DD has always had an awful tummy so I just worry more for her. She was diagnosed with toddler diarrhoea when she was little although we know now that she was in fact coeliac.