What is wrong with my DD? Help!

[mumof23188]

My DD 10 has had ongoing stomach pain for 16 months now. It started as an intermittent pain happening every 6-8 weeks but fast forward to now it’s daily and gets severe on occasions. She has been admitted twice with suspected appendicitis as the pain gets that bad she can’t move. It’s a sharp, burning pain and she says it’s like someone is squeezing her. DD is unable to bend down and has to squat down to pick things up, she’s pale, in pain when eating/drinking and can’t stand for long periods due to the pain. She’s always clutching her stomach. DD has very very loose stools sometimes up to 5 times per day snd at other times explosive diarrhoea. It’s rare for her to have a normal stool these days.

I have been back and forth to GP and I am at the end of my tether now because i can’t do anything to help her. It’s breaking my heart! She’s missed so much school. DD is taking omeprazole and mebeverine both of which do nothing. She has been referred to gastro paediatrician but the wait is up to a year. Im going to call GP tomorrow to get it expedited because how can she carry on like this? Recent blood tests have come back and are classed as normal. Anyone been through similar? Im worried sick!

Do you have 200 pounds to spare? If so, pay to see a private pediatric gastroenterologist. She will be seen in a couple of weeks and then can go back on the NHS for any tests or treatment. You can self refer. Just google local private consultants in that field and call their private clinic number

I have one dc who had similar symptoms as a toddler and was actually allergic to fruit juices. Having just water or milk based drinks helped hugely.

And another dc had stomach migraines (now actual migraines), often brought on by anxiety. Symptoms were more intermittent than you describe, but it is a fairly common thing in children that I had never heard of.

@SeaToSki I think that’s worth looking into. I just can’t leave her in pain like this.

@Bizzee thanks for your reply! They initially said abdominal migraines but the pain is there all the time now.

Definitely pay for a private consultation, beg borrow or steal the money to pay for it if you have to but you will not regret it. We’ve had to pay for a few things privately due to GP not taking us seriously or waiting times and it’s been worth it’s weight in gold every time.

Coeliac? But that’s a guess!

Worth paying for private appointment if that is an option for you. Otherwise try cutting out food groups that cause common intolerances such as dairy/gluten etc. Takes 3-6 weeks to eliminate stuff from your system but I'd say if that's the cause she should feel a difference in about 3 weeks. Anything is worth trying poor thing.

@AperolWhore I’m definitely going to look into this because it’s horrible to see her in pain like this and I feel that nobody is helping her. It seems cruel!

@camdenish im starting to think this also. She has a blood test in April for this. My concern is though that she had one initially in January 2021 which was normal. Could it still be coeliac?

DS’s friend had years of stomach pain and was eventually diagnosed with crohn’s. I don’t think it showed up on blood tests.

@mumof23188 are you keeping a food diary too? Note it takes around three weeks for allergens to leave your system if you are cutting items out but it’s definitely worth trying if you see a pattern with the food diary x

www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/blood-tests-and-biospy/if-your-tests-are-negative/

This might help OP.

My DS was just like this and was diagnosed with IBS, exacerbated by anxiety.
Before this diagnosis they did tests (blood, urine, stool) to rule out crohns or celiac disease. They monitored his height and weight for a while to make sure that he was growing.
He then had medication and lifestyle advice to help him manage his symptoms, which can still be quite debilitating at times.
The paediatrician said that if we wanted to try a different diet then it must under the supervision of a dietician to make sure that he was still getting all the nutrients he needed.
They didn’t think it was celiac disease because of all the other results, but if they had suspected it he would have needed an endoscopy to confirm a diagnosis.

We also had to keep a food diary to try and spot any patterns.

Coeliac is a possibility and you can do an elimination diet at home. Also dairy intolerance again elimination diet. Your gp practice nurse should be able to give you any extra advice you need on suitable substitutes. I suspect the consultant would try this before more drastic investigations anyway. They won't hurt for a few weeks.

You can have a false negative blood test for coeliac disease.

I’d not do an elimination diet unless you’ve been told to by a consultant.

My other guess would be anxiety.

Vitamin B12 and folate both extremely low, so this may be where the issue lies. Being within range is not enough, both need to be optimal and neither is.

The Pernicious Anaemia Society has a forum on healthunlocked(dot)com. I'd start by posting these blood results on there.

Good luck.

I had these symptoms in my teens, on and off for about 5 years. It was agonising and caused my parents so much anguish. In the end they told me it was IBS brought on by anxiety. I was never really keen on that as it felt like it was making it out to be my fault and not very serious. I can still remember the pain now. I could only lie on my stomach when it happened, I couldn’t even stand. Mine got worse when I was worried about friendship issues, exams etc… is there anything going on in your Dds life? Is she worried about secondary school maybe?

They gave me some medication which stopped my stomach from spasming, no idea what but it helped. I also had hypnotherapy and diazepam (not sure that’s the done thing now!) for particularly stressful situations.

Has the GP done the following:

Blood test to check for celiac?

Stool test?

If not that shouid be happening and that can be done with GP

Going that many times a day isn't normal
And nor is the pain.

Do not cut out gluten until she has been tested otherwise it will not be accurate!!

Not a doctor...
Her red blood count is right at the high end of normal, and her haemoglobin right at the low end of normal. That seems a bit weird. Plus the very low ESR. I would maybe ask about that.

I know a little about blood ranges in Crohn's as my DD developed it aged 10. She had high platelets, high ESR, low ferritin and these are typical signs of chronic inflammation and malabsorption. So it doesn't look like an IBD. My dsis has Coeliac and it was picked up due to mouth ulcers and serious anaemia (and every other vitamin deficiency).

@DeedIDo yes that was my thoughts aswell, they’re in range but low. Thanks for the website. Will pop a post on there.

@Remmy123 she had a coeliac test back when it all started in Jan 2021 and it was negative. She has had a calprotectin stool test recently which came back at 193 which they said was very slightly high but needs to be repeated at the end of the month.

@Teenylittlefella thanks for your message. I will definitely chat with GP about results to query them. Ahh sorry to hear your DD has Crohn’s, hope she’s feeling well now.

Yes make sure calprotectin is checked as above 50 indicates possible IBD

My son has ulcerated colitis and his was much higher but with those results it shows Inflammation from something, could well be IBS still

I got quite frantic and almost paid for private for my son bjt I didn't need to in the end.

I would look into a private colonoscopy to rule out Chrones etc as of it is that medication will help her

In meantime I would be giving her low fibre east to digest foods, white pasta / bread / mashed potato / salmon / chicken etc

Low folate can cause diarrhoea.

@Remmy123 yes that’s the test she had, got to do a follow up one. Spoke to GP today who said they will only expedite her referral if the next stool test shows as elevated again as her bloods are fine.

It’s the most frustrating thing seeing them suffer and nobody helping. It’s been going on for 16 months now. So pleased to hear that your son got the help he needed. Hope he’s doing well now?

Great tips about diet, my DD isn’t eating a lot due to the pain but I am making sure she has a daily vitamin.

@TooManyPJs ah does it? I spoke to the GP about the low levels and they basically just said that it’s in range so it’s not a problem. Will speak to pharmacist and see about getting a supplement.

@mumof23188 my son was having weekly stool tests for a few weeks which elevated so I do hope they are close together

My son is fine thankfully, it is key to get a quick diognosis to eleviate her symptoms as sound miserable!!

IBDs do not show on blood tests by the way, some blood markers for inflammation *may be elevated but not always.

When is next stool test due? X