Struggling to get a diagnosis?

[Laundretta]

I just thought I'd share my 18YO daughters experience here, you never know it may help someone else. I should make it very clear at the outset that I have no medical training and you should definitely check with your medical professional or do your own reading before taking this experience on board.

Starting just over a year ago, Ella started with classic UC symptoms. She had blood and mucus in her stools, either constipation or the opposite, bloating, cramps, fatigue. Raised inflammatory markers in her blood and stool. She also suffered from painful inflamed joints, especially her knees.

Tests showed that none of this was due to bacterial or parasitic infection, and other causes were ruled out by the GP, who was fairly certain that she had developed UC or maybe Crohns.

She was referred to a consultant gastro who then performed a colonoscopy. This showed completely normal as did the biopsies taken. She also had an upper GI camera-pill, so no biopsies this time, but the images were reportedly, completely normal. This process took over 8 months, all the while Ella was experiencing symptoms and trying to keep up with her first year at Uni, during which she has hardly been able to go out and has had to have special dispensation for deadlines. On the plus side, she did finish first year with over a thousand pounds more than she started with!

Initially she felt disappointed to be told that there was 'nothing wrong' ; at least with a diagnosis there would have been a plan for getting symptoms under control, even if it was a lifetime condition to contend with. She was discharged back to the care of the GP who had nothing to offer but IBS medication.

At this point I became aware that Ella had also been experiencing recurrent thrush and she had a fungal nail infection, was prone to athletes foot and she has been prone to fungal ear infections on and off for several years. I started to look at research for candida overgrowth, which had never been considered by either the GP or the consultant at any point. healthline.com/health/candi...

Frankly, by this stage, we were ready to try anything but I'm not a fan of the restrictive diets recommended by some to address candida overgrowth. So I researched some treatment protocols for it and found that a 50mg a day fluconazole for 7-10 days is used in some countries. (I'm sorry, I have lost the references) I then referenced the NICE guidelines for Fluconazole use and noted that daily doses of up to 400mg daily are prescribed for some conditions. bnf.nice.org.uk/drug/flucon...

Armed with this knowledge I felt confident that it would be worth trying 3 lots of OTC Fluconazole 150mg tablets (marketed by Canesten in the UK for thrush). Ella took these at 3 day intervals and they have worked an absolute treat. In addition, for the 2 weeks leading up to taking the tablets Ella took a daily dose of Biomel probiotic to bolster her gut bacteria.

This was all about 6 weeks ago, and so far, so good. She is asymptomatic. It's been an incredible transformation, although she is yet to re-introduce foods such as chickpeas which added significantly to gassing and bloating. In addition it is now the uni summer holidays and so the stresses of uni will have to be re-introduced later in the year. Only time will tell, but it has been so transformative that I felt I should share with this group where I'm sure there will be many members who are struggling to get a diagnosis despite persistent symptoms. x

[Valbaty54]

Interesting story! I do hope your daughter stays well and that this info is useful to anyone else with symptoms but no clear diagnosis.

[willow24 Administrator]

Im glad your daughter doesnt have IBD but this post can cause confusion and false hope in those that do. Oral Fluconozole should be used for vaginal thrush only unless prescribed by a GP. A Pharmasist can only sell these tablets over the counter for vaginal thrush, so you are also risking their license to dispense. And probiotics dont work for everyone, esp those that have rapid transit or take metronidazole regularly

[Laundretta in reply to willow24]

I think it’s pretty clear that I am in no way suggesting that this is a treatment for IBD, or that I am in any way medically qualified. What we did was transformational for my daughter, and it might be an as yet unexplored Avenue for someone else. If it hadn’t worked, I mitigated that there would be no harm done. Again, just my self-informed opinion, not a medically qualified position. As for the biomel, who even knows if it helped? I don’t know, it may have made absolutely no difference. It’s just what we decided to try.

[willow24 Administrator in reply to Laundretta]

Antibiotics and antifungals should be used carefully. Misuse of these medications are leading to bacteria resistant strains. As i also mentioned by buying over the counter fluconazole for things other than vaginal thrush puts the pharmacist at risk of losing lisence as it is only to be sold for vaginal thrush. If a gp prescribes it for other reasons a pharmasicist is covered to dispense it

[Laundretta in reply to willow24]

I get your point, really I do, but it was used carefully, following lots of reading and research. Not only that, but Ella did genuinely also have vaginal thrush, so there was no risk to the on line pharmacist I used who happily sold us 3 tablets in one order. Re-iterating what I say in the very first paragraph of my post, I am not medically qualified and people should check with their medical professional. I hoped that if Ella’s story rang bells for someone, and like Ella they continued to suffer without diagnosis, it may help them find the missing piece of their puzzle.