IBS or something else?

[Moon30]

Hi, my 18-year-old son has had chronic diarrhoea since early childhood. We’ve been to the GP numerous times over the years, but it has always been brushed off as Irritable Bowel Syndrome without any real investigation. Over the last 4 years it is significantly affecting his day to day life due to his poor attendance and constanly being late for school and now college.

He has urgency, so sometimes he can eat and immediately need the toilet, other times it affects him later that evening or the next morning. He also has stomach cramps, frequent mouth ulcers, headaches, fatigue, and there have been occasions where there is blood in his stool. Sometimes he can be on the toilet for a couple of hours and then going back and forth afterwards.

We have noticed that foods containing gluten seem to trigger his symptoms. A GP mentioned possible Coeliac Disease, so my son continued eating gluten daily as he thought he was being tested. During that time his symptoms were particularly bad.

However, it turns out the GP only ran basic allergy tests and not coeliac tests. He then saw another GP who told him his results were “fine”, that there is no way to test for coeliac disease, and advised him to just stop eating gluten and that it is IBS.

No blood tests have been done for deficiencies, and no stool samples have been requested.

I’m now unsure where to go from here. AIBU in thinking that other conditions (like coeliac disease) should be properly ruled out before diagnosing IBS? I tried to make another appointment for him with a different doctor but due to him being over 18 they won't allow me to but my son has now lost all confidence in them due to being messed around for a couple of months with blood tests and appointments and then being dismissed, he feels that they're not taking his symptoms seriously and how much it effects him.

Just to add my brother has Ulcerative Colitis, not diagnosed until he was early 30s when he became really poorly after going back and forth with the GP for years. And my niece is diagnosed with Cealiac disease.

I am shocked that in 4 years they havent done any stool tests or sent him to gastroenterology for any further testing.
I would absolutely encourage seeing another doctor as this could be IBD or it could be coeliac or any number of other things that need ruling out.

Not that you should have to but could you consider paying privately? Honestly both me and my Daughter have had health issues that have both only been helped or resolved by paying for private appointments and its what I would suggest.

My recommendation if you can afford it is look for a good online IBD group, ask for recommendations for good gastroenterologists and then pay for a consultation. It may be £200-£400 for an appointment (im not sure exactly how much it would cost) but they could give some recommendations and send those back to your GP to follow up, so it doesnt necessarily mean you have to fund the whole thing.

Sorry you and he have experienced this. It’s awful being dismissed by your doctor. Anecdotal I know, but I have a severe gluten intolerance but not coeliac, so didn’t show up in any tests but ruling it out was like night and day. If it makes your son feel poorly, cut it out altogether without waiting for further tests.

Sounds like it could be IBD which would be either Crohn's or ulcerative colitis. My advice would be to request a calprotectin test, which is a stool sample sent for testing IBD in particular. It is less invasive and expensive than going for a colonoscopy. If IBD is present, he will be sent to a consultant to deal with the issue. Sorry to hear he's been giving the run around with GP's, I've been there and its soul destroying. Best of luck.

There is a blood test for coeliac! My husband is having one

I had similar symptoms until 21 when I had a blood test done for food allergies (Yorktest at the time, used to be about £250 though about 20 years ago). I had a igD +4 antibody for cows milk, and a lesser reaction to yeast and cashews. Cut out of diet (not the cashews!) and it's life changing. I used to get huge apthous mouth ulcers that would hang around for a month at a time, had a swollen stomach from a young age, eczema, asthma and caught every cold going not to mention chronic and continuous earache. I personally believe IBS is a load of junk only in its a term for a lot of symptoms not to undermine anyones' diagnosis of course. I was tested for coeliac twice, once at 4 and then at 19/20, both negative but I do think I can only tolerate a little wheat I got very ill after eating a lot of bread on holiday (shingles at 35). Coeliac can be tested for but is hard to pin down. Endoscopy and colonoscopy for chrones was negative also, but obviously only got that checked as symptoms warranted it. An exclusion diet would be a recommended step, though at the time it was hard as it takes a while off a food to have any obvious change when you introduce it. I would highly recommend a blood test to check for intolerance, you only have to send off a finger prick and get a yes or no result to start with, it was a tenner to do this for me at the time and then you can proceed for a further test on the same sample if something shows up. Best of luck.
Edited for spelling!

Sounds like IBD. I have ulcerative colitis and if I’m flaring or starting a flare I have those symptoms. I had it for a few years before I became sick enough to be diagnosed. It actually took my cousin being diagnosed with UC for me to realize I had exactly the same symptoms and went for testing. It was very bad for a while, but with the help of Biologics (Humira) I have been in remission for almost 9 years. I have the odd blip but I recognize the symptoms and get a handle on it. Stress is a main trigger for me. As stated by other posters, I would request a stool sample for calprotectin. A blood test that tests for inflammatory markers (CRP and ESR tests) I would also demand a referral to a gastroenterologist team and organize to have a colonoscopy. They aren’t nice, but if your son requests sedation he should get it. The drinking of the stuff to clear you out before hand is the worst part if you get sedation. I was diagnosed in the UK but found treatment here awful. They tried very little before they were going to do surgery. I refused and went back to Ireland and got under a Gastro team there that are excellent. I now live in the UK and have a gastro team here incase something goes wrong but my care is led by my team in Ireland and they happily liaise with the UK team to keep me in good health. I just found the UK didn’t want to try the biologicals as they were alot more expensive back then.

They absolutely can test for coeliacs with a blood test! They tested my daughter a couple of months ago. Have they tested for things like anemia and other vitamin deficiencies too? The reason they tested my daughter for coeliacs was because she was anemic and if he does have IBD or coeliacs he's much more likely to be anemic etc.

I would really encourage him to see another doctor. Go in with a list of all the appointments you've had and say you feel like he is not been taken seriously and really hammer home the symptoms/effect on his life. It's totally unfair for him to carry on like this when there could be a raft of treatments to help him, poor lad.

Thanks everyone, it’s reassuring to know it’s not just me thinking this is completely unreasonable.

I was thinking of writing an email to the surgery outlining all of his symptoms, explaining why we’d like him to see a different GP, and asking for proper testing and a referral to a gastroenterologist.

Do you think that’s the best way to approach it, or has anyone had success doing something different?

Just to add for those who mentioned deficiencies, as far as I'm aware they have not tested for anything other then allergies recently, i asked for a copy of his blood results but as he was not with me at the time they wouldn't give them to me with him being over 18. He has a form to complete to allow him access to his NHS records so once he has those we can have a look at his results properly.

What a horrible situation for you all.

There is a blood test for Coeliac, but it isn't conclusive, and coeliac can still often be missed. One of the problems with it is that he would have to eat gluten for 3 weeks prior to the test. Not good.

Another way is to do a biopsy of the colon by endoscopy. However, it can also be shown by an gascroscopy, which shows shattering of the duodenum (I had this for other stomach issues recently, and it was interesting to get this feedback).

I also have severe IBS. I have constant bloating, but the pain, which at times was crippling, is now treated by amitriptyline. I follow a Fodmap diet, which is great, but I know when I've failed.

In order to diagnose IBS, the doctor firstly has to investigate everything else so as to disregard these issues. Yup. It's a pain.

Has he had a stool test for calprotectin - if high it indicates IBD. He really needs a gastro referral.