What is this stomach pain?

[CathySmith]

My ds15 has had stomach pain for 2 months. It is always there but flares up to levels where he is doubled over. It is a generalised pain which moves around but is usually central. I hurts more when he passes urine and stool and when flaring his penis hurts when he wees.
His urine has been dipped multiple time and the most recent sample sent off to see if anything grew, but all clear. He has had a thorough blood test including testing for gluten intolerance but again all clear.
We have realised he wasn’t drinking enough but for the past week he has been having 2 litres of water per day with no improvement.
We need to go back to the GP to see what the next step is as all tests have come back clear but he is still in pain. I just don’t know what we are even asking for or who they might refer him to.

Has he been tested for coeliac?
Had a abdo ultrasound?

He has had a very thorough ultrasound, everything from under the ribs to each groin, all normal. The person who did that said the only major organ that can’t be seen on ultrasound is the bowel.
He had the initial blood test for coeliac which was negative, but his Dad is coeliac so he is currently 3 days into a gluten free diet just to see if it helps. It’s probably too early to tell but he had a bad flare up last night.

How high up the abdomen is the pain?

Any other bowel / bladder symptoms - bleeding, increased urination, urgent urination, constipation, diarrhoea, mucus?

Does the pain improve after passing urine / stool or just increase with the motion and then return to the baseline level of pain?

The pain moves but is mostly around the belly button.
No urinary symptoms but mild constipation.
The pain increases on passing stool and sometimes urine, is high immediately afterwards then an hour later is down to baseline.

Oh dear sounds horrid. Bloods were only thing that showed up my problem. I had an abnormal amount of Inflammation they couldn't pick up in A and E physical exam by different staff members. Later a scan showed up the problem in more detail but it was the blood test that made them take stock. I won't go into what it was but I hope you get it sorted. How worrying.

Edit. I also was in agony passing urine. Docs were rubbish and even emergency room were useless they nearly sent me home. Thank God for blood tests.

Has he had a stool test?

Some initial ideas:

Crohns - but there’s not diarrhoea or blood by the sounds of things? Has he lost weight?
Diverticulitis
Umbilical hernia (assuming he’s had his stomach felt by the GP though?)
Chronic appendicitis/ grumbling appendix

Did they rule out IBS? Did they try antispasm medicine, if the pain is caused by intestinal spasms- Buscopan?
Is the pain related to a specific food, or it's random ?
Did they say anything about lactose intolerance, not just gluten, these are the 2 culprits normally mentioned, not just gluten. They test for gluten allergy, but some people still have gluten intolerance- not tested but with very similar symptoms sometimes, but it wouldn't just start suddenly if he didn't have anything in the past.
Did they check the inflammation markers, inflammation can cause pain?
Did he have any cold symptoms before this started?

This pain did start with a raised temperature, it would shoot up as high as 41 then 10 minutes later be lower. It was around 38 for the first week. Since then it’s mostly been fine but he has the occasional low grade fever.
We are waiting on stool tests but not sure what was tested for.
Lactose intolerance hasn’t been mentioned, he was on special milk for this as a baby but then seemed to outgrow it.
We are planning to try lactolose to soften his stools, but whilst this may help I doubt it is the full picture.
I think perhaps we need to keep a food and pain diary as there isn’t anything standing out diet wise.

Given the pain started with a fever - maybe mesenteric adenitis? Although I’m not sure if that would have the flare cycling.

Food / pain diary sounds like a good idea

Fever might be a red herring, if the other (prolonged) symptoms began at the same time as he had a bug or similar. Is he/has he been sexually active, OP? His symptoms could be chlamydia. That can cause very uncomfortable, persistent abdominal aches, as well as all the urinary tract stuff. Just a suggestion, not to be controversial! Whatever it is, I hope he gets a useful, very treatable diagnosis before much longer.

I did privately ask if it could be an std and he casually said no of course not. He is a homebody so I wouldn’t think it could be this, but he did go away on a school trip abroad just before this kicked off. The other thing about that holiday was it was a buffet that everybody hated. I wonder if he could’ve picked up a bug from that?

Low grade fever is a classic sign of viral infection: why on earth are they doing a stool test instead of a viral test first? By the way, just because they postpone doing the right test, it means the viral infection can simply go, while post viral symptoms can stay. Because they simply missed the window to test for viral infections. But anyway, a GP here said they don't test for viruses ...quite extraordinary during a pandemic with a virus known to be able to cause more than 200 symptoms after the infection is gone, with one of the main symptoms being low-grade fever...but this doesn't seem to bother them

It could be a parasite of some sort if you think the hygiene of the buffet was iffy.

Where roughly was the trip?

Post-infectious IBS is also a possibility

The correct test for low-grade fever is a viral test, it's the most basic medical step for symptoms that follow fever. How did they manage to justify not doing it? How could they test for gluten allergy: any real doctor knows gluten doesn't cause fever - it's extraordinary how they chose this route...And if these are post viral symptoms caused by a virus they didn't bother to test for, the next step is to test for inflammation, also known sometimes to be caused by a viral infection, being known how inflammation causes pain. Because of course if it is inflammation then this needs to be treated for the pain to stop.

I’m confused, I don’t know what a viral test is, other than the specific one we do for Covid. Surely a virus would show up on a full blood panel? Although the bloods were only done recently.
The trip was to Andora.

Was he skiing? Just thinking if it’s some sort of sports hernia perhaps

He was skiing but has had an ultrasound to rule out hernia.

My understanding is that hernias can be missed on ultrasound if the hernia is only bulging during specific activities - for example during a bowel movement. I believe CT is needed to completely rule it out - but given his age they may not want to do one because of the radiation

Hopefully you’ll get some answers soon

H.Pylori possibly?

It’s definitely worth treating the constipation. The pain from that can severe. Maybe have a look at Bristol Stool Chart with him if you haven’t already. Even if he’s going regularly he could still be constipated.
Hope he’s feeling better soon

When they test, for some reason they do a CRP test which tests for inflammation caused by bacterial infection (when high it shows a bacterial infection in general, not accurate enough for viral infections). I assume if they tested for viruses, they would have explained what test they did. Viral tests are specific tests, you would know if they did them.
Viral tests are done when taking a sample, like nasal swab to find the exact culprit https://www.healthlinkbc.ca/tests-treatments-medications/medical-tests/viral-tests#:~:text=A%20tissue%20sample%20can%20be,a%20needle%20or%20other%20tool.
Viral tests can be antibodies test to show recent viral infections, not current ones (UK banned them for covid, the same as they banned testing for covid everywhere, this is why it's up to the patient if he/she want to test for covid, it's not a doctor's duty of care the same as with any other viruses, meaning a doctor will not notify the PHE, despite the law asking them to do just this, covid=notifiable disease)
By the way covid is known to cause inflammation which can affect any part of the body, it's also known to linger in the gut and affect the gut. It would have been very simple to ask the right question and do the right test to rule out covid, the same as they rule out gluten allergy (despite this choice being completely useless, so they managed to do a useless test, why wouldn't they do the correct one?

So when we go back to see what the next step is, we could ask for a viral antibody test to see if his symptoms are left over from a recent virus? Or is 8 weeks after the fact too late?

How often does he have low-grade fever? does he still have it?

I assume the stool test is for the H Pilori, a bacteria. I am surprised they didn't mention this https://my.clevelandclinic.org/health/diseases/21463-h-pylori-infection But I don't see fever as a symptom. https://www.mayoclinic.org/diseases-conditions/h-pylori/symptoms-causes/syc-20356171 No fever mentioned.

It might not be too late for an antibody test if they agree to do it. But a GP here on Mumsnet said clearly that they don't test for viruses. You can try to ask and see what they say.
I found this, about an MRI to investigate abdominal pain https://www.radiology.ca/article/why-would-i-need-abdominal-mri/#:~:text=Abdominal%20MRI%20provides%20detailed%20pictures,of%20abdominal%20pain%20or%20swelling.
A few pieces of information about what can cause stomach pain, besides covid https://ada.com/covid/covid-19-symptom-stomach-ache/

''Because mild stomach issues are not as common as some of the other hallmark symptoms of the disease, such as a COVID-19 cough or fever, it’s easy to dismiss stomach pain as something other than COVID-19. Alternatively, severe COVID-related stomach pain may be initially identified as a more serious condition, such as appendicitis, pancreatitis, or gallbladder disease. Because of this, if you are experiencing stomach issues and suspect you may have contracted COVID-19, it’s essential to take a COVID-19 test.'' - NHS never asked children to test for covid, so I don't see how they would suddenly take it into account later if they can't even see how essential the initial test is. But this website also mentions other conditions that can cause stomach pain.

If serious conditions are ruled out, they need to test for inflammation. If inflammation is to blame, medicine to reduce inflammation should help. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9600357/

If the gout microbiome is affected (even if it is, it shouldn't cause sudden episodes of strong pain), good gut bacteria can be found in fermented foods.

This is information in BMJ - any UK doctor has free access to this information:
https://www.bmj.com/content/385/bmj.q842#:~:text=6%20In%20severe%20cases%20this,the%20bowel%2C%E2%80%9D%20says%20Griffin. Griffin is a British virologist , can be found on Twitter

Many ideas and lots of information: I assume if they already found/suspect a cause or sent you for some investigations, you might not need them. Good luck!

Thank you @ForRoseExpert I’ll sit and have a read through tonight. At the moment we are waiting on a stool sample and if that’s clear we will need to ask what happens next, so no referral as yet, I don’t think they know who to refer to.