Ten year old with chronic pain

[OneSmallPieceOfCheese]

My ten year old has had abdominal pain for years, and we haven't been able to discover why. She has cut out gluten which has helped a bit, but the low level constant pain is still there. It is always hurting in the same place, around the belly button. Painkillers don't help. She had toddler diarrhoea which resolved (when she stopped having Weetabix for breakfast) but then became long term constipation. She still takes medication for this and is much more normal now, but still has some trouble with it. No gas, burping etc, not really bloated. It seems to be linked with her headaches and anxiety, but I don't know whether one is causing the other. We are waiting on an ultrasound.
I'm really don't know what to do as I can't reassure her when I don't know what's causing it. If anyone has experienced something similar, I'd be grateful for any advice.

Abdominal migraine?

Yes possibly, would that be more 'on off' though?

it's crucial to continue working closely with healthcare professionals to determine the cause of your child's abdominal pain. An ultrasound is a good step, and it's possible there could be a connection between her abdominal issues, headaches, and anxiety. Keep a detailed symptom diary to share with her healthcare team, which may help with diagnosis and treatment planning.

Thank you, yes we kept a detailed diary on the specialist's recommendation, it did help to identify gluten as a possible problem. But I'd hoped that cutting out gluten would fix the problem, and it hasn't. We tried cutting out dairy for a week or so, but found it really difficult as she just ended up eating very little. If anything, it made it worse.

Have you tried a low FODMAP diet?

Have you tried probiotics? Doesn't work for everyone, but definitely helps some.

Do you hospital have a child clinical psychology team? This would be something that they could help with (headaches/anxiety linked with pain)

Have you looked up functional abdominal pain? 2 of my kids had this and have mostly grown out of it. Was definitely linked to anxiety.

Has she had her thyroid checked? Tummy pain was the only sign in my friends kid and then it was this

If going gluten free helped slightly it might be colitis / CD. She needs a proper scan and checkup

We did try the low FODMAP diet but found it really hard going. I think it's better aimed at adults not children unfortunately. But I can totally see why it's a good idea so we might have another try. It's just a lot of pressure to get it exactly right and when you aren't always there, you can't make the decisions for the child. I found that very difficult.

I'm a big fan of probiotics and improving gut flora, but it hasn't made any noticeable difference for my daughter, unfortunately. But we could maybe try a different type, do you have a recommendation @nocoolnamesleft ?

That’s completely understandable, DS is a picky eater and so it’s extremely hard for him too. I’m sorry you’re both going through this, abdominal pain can be extremely hard to solve. Instead of maybe doing a full FODMAP diet, maybe try and document what foods maybe make her worse?

Picky eater here too. It's not easy.

@BloominFlower how did you approach the low FODMAP? It just felt overwhelming to us.

So for us it was quite painstaking because a lot of foods that are allowed on low FODMAP, DS doesn’t like. It was a lot of trial and error of what made him feel worse once he had ate it, and what he could deal with. Also reducing (added) sugar almost completely helped a lot

Interesting about the sugar. We eat too much sugar, definitely.

There are quite a few autoimmune issues that can cause abdominal pain - has she had a full blood screening including an early morning cortisol test (for Addisons / adrenal insufficiency)? The GP won’t have done this as standard but it’s worth doing.

If dairy free made it worse, what did you replace dairy with? Soya or oats could be a trigger.

I would be inclined to take out gluten, dairy, eggs, soya, nuts and fish out for 6 weeks each and track symptoms when reintroducing, remembering it can take 72 hours after consuming food to get a non-ige allergic reaction (e.g. stomach pain)

So many useful suggestions on here, thanks everyone. Hopefully I'm replying to the right people!
@Pigeonqueen that's an interesting one, could it be hereditory? I was tested recently and my cortisol levels were abnormal, then normal on the retest.
@JustAMinutePleass they suspected coeliac, then they didn't, but now they might do again. It's... frustrating.
@BonnieBairn I think this may be where we're heading if the tests don't show anything.
@NigelFaragesTinyConscience That's a new one for me to research, thanks. Do you know how the pain presented for them?

Addisons as such isn’t hereditary but autoimmune issues can run in families. So for example you might find families with diabetes, Crohn’s, Addisons, thyroid issues etc all in the same family but not everyone will necessarily have the same condition. It is definitely possible for it to be the same condition though - so very interesting about your cortisol level. It’s very important the test is done as close to 9am as possible as that’s the time when cortisol should be at its highest.

This may be useful to you - the levels may be different for children however -

https://cks.nice.org.uk/topics/addisons-disease/diagnosis/investigations-suspected-adrenal-insufficiency/

Does she have hypermobility? That can affect the internal organs and cause severe digestive problems.

Has she actually been tested for coeliac?

@Gettingbysomehow yes she does! I did wonder whether she has Ehlers Danlos
@Scutterbug she's had several blood tests, first showed high levels but then reducing in each subsequent test