Some Observations

I've followed GF Guerillas for a while now, and tend to observe from a distance, rather than directly engage into posts. In this time I've noticed some interesting things:

- People are quite poor at reading the questions/queries that individuals are posting, so go off on a tangent in their answers or just make the answers all about themselves and how they've found things;

- People seem to think that because something is ok for them, it should be for everyone else;

- People are posting 'advice' on coeliac who clearly (from their profile) do not have coeliac - e.g. one female poster suggesting someone just try everything and see what works out for them, including gluten.

- People are posting medical queries that are in no way related to coeliac/gluten and are asking random strangers for input rather than going to their own GP. This has included posts about severe abdominal pain that is not related to coeliac/gluten consumption. Within this there is the notion that coeliac/gluten is the root of every health problem - it's not. Medical queries are for doctors, not random strangers on forums.

I'm not sure if there is anyone overseeing this forum, or if the administrators are particularly engaged, but it does seem to require some level of input at times. I'm alarmed in particular to see someone post something about severe menstrual issues and an evidently male poster put on a long post that is entirely unrelated and with the best will in the world, not his remit as a male. This is meant to be an NHS led intitiative but it just seems something of a free-for-all at times.

This is a great resource, don't get me wrong, but these types of forums, particularly when related to health, require oversight and monitoring for bad advice or individuals who should be going to their doctors.

[Penel]

People post in a spirit of helpfulness, if it’s irrelevant to the OP then they can just ignore it.

The advice on not relying on HU in place of a health care professional is clear.

[Hidden in reply to Penel]

I've noticed two administrators tagged to this site - Irene and FionaGFG. I do think they have been neglectful of administration. I appreciate what you state by 'the spirit of helpfulness', but sometimes common sense and logic should prevail also. Equally, it does seem from some posts that individuals are being prompted by respondents to their posts to seek medical advice from a GP. To refer to what I posted above, there is a lack of administration on here that does seem prevalent on other health focussed forums.

[Narwhal10 in reply to Hidden]

Yes Benjamin123,

I have read your post several times and yes, unfortunately, there are going to be people who have poor communication skills, are ill informed, go off on tangents and maybe, there’s even some bots on here. There also does some to be a lack of moderator or administrative support.

Your points 2 and 3 - sounds incredulous, if I’d seen it I’d have reported or messaged the person but that is me.

I am hoping, people are reasonably intelligent people to decide whether to listen or ignore others’ experiences and seek proper medical advice with times, date and details of their symptoms, including photographs and samples when indicated. This accuracy gives a clinician a far better picture, they are then able to order further tests, examine, diagnose and treat more effectively.

There’s quite a few of us on here who were/are front line 😉 🤫.

[Hidden in reply to Narwhal10]

Thank you for updating on that.

[Annie1801 in reply to Hidden]

Discovering you’re coeliac can be very worrying to a lot of people. Quite often there are symptoms that are seemingly unrelated that people need to ask about. If someone has a problem not related to coeliac disease but they want advice on it I don’t have a problem with that at all. The whole point of this forum is to help kindred spirits. Medical advice should always be sought but sometimes the answers aren’t here whereas someone on here might have come across the same problem.

[stillaboveground]

Hi Benjamin123, The idea of this forum is for people to offer help and support to fellow sufferers and and their families, if someone asks for advice and gets peace of mind from the answers this isn't a bad thing. I think everyone on this forum is aware that proper medical help is essential but a bit of support is also essential.

[Hidden in reply to stillaboveground]

Thank you for updating on that.

[Afrohair]

I don’t think there’s no harm done what people post it’s just a support network most people posting may not have no where to turn with their troubles .I’ve seen the post on menstruation and it’s related to being gluten free for some ladies being gluten free can help symptoms I hope you could be more understanding of other people’s issues around gluten free it is not just for those with celiac disease a lot more people are gluten free now due to health issues please be more understanding you can always contact admin if you think posts are inappropriate

[Hidden in reply to Afrohair]

It's not the negativity that worries me, it's the failure to seek medical advice.

[MausenMumma]

I think people understand that they are seeking 'experiential' advice here, rather than medical advice; I think it would be patronising to assume not. Also, I came here because my GPs lacked experience of my situation. People do go off on tangents... it's the nature of communication. Sure, that's not what you'd want from a medical professional, but isn't that just your point: this place does not offer medical advice?

[Hidden in reply to MausenMumma]

It's a fine line. I still see more people coming on here looking for input to diagnose ongoing (and serious) sounding conditions that may/may not be related to coeliac/gluten. Good people feel duty-bound to answer, but the posters are looking for specific information on what might be wrong with them. No one can diagnose online, no one can diagnose who is not a doctor/specialist. I appreciate people are desperate at times, but logic does need to prevail on both sides.

[Cooper27]

Forum moderators are not supposed to shape the posts that are put on the forum - they are simply there to delete spam and ensure participants remain civil to one another. Moderators wouldn't typically delete posts that stray off topic, as sometimes those posts are the posts that make forums more engaging for its users.

Unfortunately some do post in the wrong forums by mistake at times (this is probably why you've seen menstruation questions). It happens. Again it's not really necessary for moderators to delete those posts - the contributor will usually realise their mistake and ask in a more appropriate place later.

You may also find people think this is a "comments" area for the NHS website - I believe some sections on their website do link to this website, and it's not clear that this is a peer to peer forum, and not an NHS medical resource.

I hope that clears up some of your concerns