Managing gluten 'intolerance' (8yr old)

[schooltripwoes]

DD(8) has been suffering digestive troubles for some time (urgent / frequent toilet trips, bloating, pain etc.). Really, she has pretty much had a permanent 'dodgy tummy' since she was weaned. I have previously consulted HV and GP who both dismissed the constant loose stools as 'toddler diarrhoea'. But now she's 8, I think there's more to it as there are no signs of her outgrowing it and it's causing her problems at school with the frequent, urgent toilet trips and how this is considered less acceptable in junior school without a known medical reason.
GP suggested cutting out dairy for 1 month and then reintroducing it, and then try cutting out gluten for 1 month to see if symptoms improved.
Cutting out dairy had little effect (DD thought maybe her tummy was a little less sore, but still spent a lot of time on the loo). However, removing gluten was very positive. Our loo roll consumption was a fraction of what it had been , no urgent loo dashes, pain disappeared and she just looked brighter and had more energy.
We reintroduced gluten foods a couple of weeks ago now and within a day she was suffering again with tummy gurgles and bloating and was back to spending a lot of time rushing to the bathroom.
GP hasn't been overly helpful since with what to do next. Moving forwards they've just suggested that she avoids gluten as that seems 'not to agree with her'.
Should I push for further investigations for DD? GP thinks coeliac disease is unlikely as DH, who has also seen the same GP recently for similar issues, had a negative coeliac blood test (DD wasn't tested). And if it's an intolerance, to what extent should we cut it out? Full avoidance? Reduce it? Try cutting out just wheat?

Did they not do a blood test to check for coeliac antibodies before suggesting going gluten free? I would ask for that if not. It is possible to be coeliac and get negative result on blood test due to an issue with making antibodies I think so DH could have it too.

No. GP said they don't like to do blood tests on young children unless they feel it's really necessary, as they find it a bit traumatic. As DH has same symptoms (and had the same response to going gluten-free), and his blood test was negative, GP didn't think it was likely to be coeliac disease for either of them and has put it down to a likely gluten intolerance (but gave didly squat advice on how to manage it ).

We found it caused a little more cooperation when we mentioned NICE guidelines, to the letter. You could try? NICE saybthat the threshold for testing for Coeliac disease should be quite low: www.nice.org.uk/guidance/ng20/chapter/recommendations

There are genetic tests they could do too but really a simple blood test would be a good start.

She should absolutely have a blood test for coeliac disease, despite your DH’s negative test. Your GP needs educating on the symptoms and is not doing their job properly if they don’t send her for blood tests

Definitely go back and demand a blood test. And if that GP won’t do it, then see a different doctor. Hi unfortunately your DD will have to continue to eat gluten at least until after the blood test results are back. If the blood test is positive for coeliac then she will almost certainly have to have an endoscopy and if she’s not eating gluten you will get a false result. If you’re in London I can recommend a fantastic paediatric gastroenterologist.

I'd go back and insist on a blood test.
A lifetime of digestive problems is way more traumatic than a blood test.

FWIW my coeliac blood tests came back as normal, consultant actually tested me twice as he was certain I have it.
But since going very gluten free my stomach has improved 95%. No vinegar (barley), soy sauce etc.

What everyone else said - that GP sounds appalling!

It's worth flagging that the blood test for celiac antibodies has a high rate of false negatives, so even if it comes out negative that doesn't categorically mean you're not celiac - the gold standard diagnostic test is biopsy.

It's also worth noting that even if she's not celiac, she could still have a non IgE allergy (what people sometimes call intolerance, though that's not the right terminology), and this could still cause problems, so you may well want to take her off whatever the outcome. But don't do it until you've had bloods done.

To be honest, if she's got all these symptoms, you'd be much better off seeing a paediatric gastroenterology team, rather than a GP who clearly has little clue what they're doing!

Just to back up PP that a blood test should be done. The GP sounds negligent, they don't have sufficient evidence to rule out coeliac disease given the symptoms. And if your DD is coeliac, you'll all need dietician guidance. To note the blood test will only detect antibodies if your DD is coeliac and has recently eaten gluten. It won't work if she's gluten free at the time.

PS I'm 20 years coeliac and it's very manageable so please don't worry too much it it is.

Sorry - ps if it's non IgE allergy it can still cause huge damage to the gut - we were told by the doctor doing the endoscopy that my child was celiac, based on the visible damage, but then after biopsies were reviewed we were told it wasn't the right kind of damage for celiac. So don't take it less seriously if it's not celiac - you still need to avoid everything, Inc cross contamination.

And you really could do with good dietetic advice either way - there's often a team of community dietitians you could ask to be referred to, if you don't end up under a gastro team.

Ds has just been diagnosed coeliac 3 months ago despite the fact that I was also tested 2 years ago and came back negative ( I eat gluten free as I feel so much better) his blood tests were off the scale so was referred to paed gastro who took his history and ordered the genetic test. That came back positive so he avoided needing the biopsy to confirm. I've now been advised to have dh and the other dc tested to check they aren't coeliac as well.

I would keep her on the gluten and push for a blood test - it's not pleasant having blood taken but they will offer numbing cream which really helps. Just remember she needs to be on gluten for at least 6 weeks leading up to the blood test.

If she is confirmed coeliac then You may find your nhs trust provides gluten free bread etc on prescription if you are lucky which will keep costs down - unfortunately ours doesn't although there is a government level review going on at the moment which may change that 🤞

Thank you everyone and especially @DrDiva for the NICE link. I will take her back to a hopefully different Dr and push for further testing. She was gluten-free for 4 weeks and has been eating it again for the last 2 weeks (at least once a day, e.g cereal for breakfast and / or a couple of biscuits after school). Do you think we would need to wait until she's been back on it for a full 6 weeks before having the blood test?

@tkband3 Thanks but we're not in London.

Might also be worth checking out the coeliac uk website www.coeliac.org.uk/home/. You could also call them to see how long your DD needs to be back on gluten to ensure a meaningful result.

Best of luck. And if your DD is coeliac, feel free to pm me with any questions. My three DDs are all coeliac, now in their teens, but first diagnosed 12 years ago.

Was her IGA levels tested at the same time as the ceoliac test. Low IGA makes a blood test for ceoliac unreliable

@bedtimestories DD hasn't had any blood tests as DH's came back negative so GP didn't think it was worth doing for DD . I'm not 100% sure what was tested as DH doesn't ask questions . I'll ask DH to get a printout next time he goes.

Change your Dr. Keep her on gluten containing foods for 6 weeks and get her bloods tested.
1 in 100 people are coeliac.
1 in 10 if close relative has it.
Supposedly diagnosing your dd as not coeliac based on her Dad's blood test sounds crazy.