Facebook group

[JanetJAM]

I just wanted to have a little moan. So I was a member of an ibs support group on Facebook. I put a comment on about the fact that I am now gluten free and feel 100% better and they took it off and said ibs is not caused by gluten. So I said I didn’t say it was just that it had helped me and that maybe I didn’t have ibs but a gluten intolerance after all since seeing a nutritionist. They said I had bad advice and wouldn’t put my comment on. So I said that they obviously don’t want to hear about any success stories and I have been booted off the group. Has anyone else had this problem I don’t understand what I have said that doesn’t follow the rules j just wanted to offer a bit of help. It’s upset me a bit. I don’t feel I’ve done anything wrong.

[Kitten-whiskers]

Oh Dear Janet, that sounds strange. Are you able to take it up with someone (sorry, I do not use Facebook, so cannot advise) I would have thought they would have welcomed success stories, maybe someone misunderstood? My IBS is much better without Gluten as well.

I am not suprised your upset, I would be as well. If it's any consilation I cannot see that you have done anything wrong either.

Best wishes

Debs

[JanetJAM in reply to Kitten-whiskers]

Thank you it’s nice to know someone agrees with me. They said it was because gluten is not a cause of ibs.

[Kitten-whiskers in reply to JanetJAM]

Someone needs to tell my bowel that, because gluten certainly upsets my bowel x

[Happykins]

I'm sorry this has happened to you Janet, being gluten free certainly helps with my ibs.

I think I know which group you're referring to - is this the one where they insist that if you have inflammation, then it's not ibs?

All I know is that I definitely have both!

Try to ignore the keyboard warriors, hugs xx

[JanetJAM in reply to Happykins]

Thank you I’m glad to be out of it now all the rules about what you can and can’t say it’s not as if I was rude or anything I feel hard done by and I can’t say anything as I’ve been banned but will try and forget about it I’m glad it’s not like that here we all support each other which is lovely x

[Maureen1958]

Which one was it? There are so many of them. Could you put a link on here, I would be interested at having a look at their site, just out of curiosity. Some of them behave like little hitlers, get a bit of power and it goes to their heads. Don't let it upset you. It's them that don't know what they are talking about. Gluten free doesn't work for me but that is because we are all unique!

[JanetJAM]

I can’t remember the exact name it had a blue picture can’t seem to find it now sorry.

[Maureen1958 in reply to JanetJAM]

No worries, doesn't matter, I was just being nosey. 😀

[Hidden]

I think you are well out of it! Di

[JanetJAM]

Thank you I think so too now x

[Callyv]

There are some very arrogant people in some groups. Yesterday I was reading a similar post where a couple of people argued the same and said we should stop buying gluten free products unless we had celiacs because we were depriving those that genuinely needed them during this pandemic. I can understand their frustration when they can’t get the foods they need, I had the same issues, but I learned to adapt, I now make my lasagne with butternut squash! Someone even posted that gf was created by removing the gluten from wheat yet none of the know it all’s corrected them. You’re beat out of it x

[Hidden in reply to Callyv]

Can agree with you there. We have a special needs great granddaughter who can only have dairy free yoghurts and have to fight to get them for her.

[Hidden]

I got thrown off a Facebook gardening group for asking about weed killers. There are just some very unkind people out there Janet and I think you're probably better off away from the group. But on a positive note, glad you're feeling 100% better! ❤️

[Hidden]

Permanently delete Facebook and you will feel 100 percent better. We had this as part of our company business model (as advised) total rubbish with stupid people commenting on stupid stuff!

[Batteria]

You haven’t. You did the right thing. You were only talking about your own case. And for the best reason. So that someone else might just benefit from your experience. Ibs is an umbrella term for bowel misbehaviour and in my book gluten intolerance can certainly be one of the causes. Just marvel at the ignorance of others. Con amore Bx

[xjrs]

Maybe they should have just commented on your post to clarify further for readers. For some (but not all) IBS sufferers it tends to be the FODMAPs in wheat products that cause problems. By going gluten free, this will usually mean eliminating wheat products, which means removing the FODMAPs found in wheat. Here's some further info on this:monashfodmap.com/blog/avoid...

It is great by going gluten free, that you have found that this has helped you. Also when you eat out, it is much easier to say that you are gluten free rather than wheat free, since restaurants understand what this means due to people who have coeliac disease and can't eat gluten. Also when you buy food in a supermarket, if the product says 'gluten free', you can be sure it doesn't contain wheat.

I know what you mean about posting. You do this in good faith and trying to do your best to help others, when sometimes things can get taken the wrong way or you end up triggering something sensitive in others, completely without meaning to. It can be a bit demoralising. Also with the written word, rather than speaking to people face to face, communication can get a bit 'off' and people take a different meaning out of what is being said. Just know that you were trying to do your best.

Maybe you could message them with the above explanation and say that they could have handled things differently?

[CParis47]

I know the group you're talking about...really ignorant admins there. They won't tolerate any opinions but their own based on old data. Cheers that you are not there anymore. I just go there to have a few laughs everyday!! Glad you're ibs have improved now that you're gluten free!

[JanetJAM in reply to CParis47]

Thank you it has absolutely changed my life they said it was bad advice but it was the best advice I’ve ever had I can go out now with no anxiety about needing the toilet (mine was mostly diarrhoea) so I am so much happier and I just wanted to share that with the people on there but I now see all they want is to print the doom and gloom and not success stories so I’m glad I’m out of it. This site is so good for me.

[Carrjan]

You're Right about gluten but it isn't The only cause of IBS. It is just one of the many FODMAPs (Google this) that can contribute to IBS and things like lactose in dairy products and garlic and onions and lots of vegetables can too. There is a FODMAP threshold - ie. you can tolerate so much, from various foods, but if you exceed it you can get IBS. But we dont know where the threshold is until we eliminate most FODMAPs then reintroduce them gradually. You may be eating something else that you are intolerant to, or it may be just caused ny stress, which I think it is, in my case.

[jox1]

Yes a very odd perspective from those FB admins -.even NHS gastros now recommend low FODMAP for IBS afaik. That diet would remove *most* of the sources of gluten....