Can we change the name of the 'Allergies' topic please?

(25 Posts)
undecidedanduncertain Tue 28-Jan-14 09:11:12

Can we change it to: 'Allergies and Autoimmune diseases'? Or at least 'Allergies and Intolerances'

Lots of people with DC with coeliac disease (including me) post here, and it is annoying to have the implicit suggestion that coeliac is an allergy - when I spend an awful lot of time in RL trying to explain to people that it isn't.

A lot of discussions under the topic are about dietary restrictions, from allergies and coeliac as well as other conditions. If it was called 'Allergies and Autoimmune diseases' that would cover coeliac and diabetes as well.

I know when my DS1 was first diagnosed, it took me ages to find a place on MN where knowledgeable people could advise me - because I didn't think of looking in 'Allergies'.

Thanks for considering this.

CouthyMow Tue 28-Jan-14 09:15:51

That's a good idea, actually.

RowanMumsnet (MNHQ) Tue 28-Jan-14 13:38:00

Thanks for flagging this; we're going to sticky it for a bit in the Allergies topic to get a sense of what other Mners think.

Charmingbaker Tue 28-Jan-14 15:28:39

Well said undecided, couldn't agree more. (Mum of 2 coeliac DC who is not nitpicking when she points out her children are not allergic to gluten!)

freefrommum Tue 28-Jan-14 15:31:16

I think it should be changed to 'Allergies, intolerances and coeliac disease'. I have a DS with food allergies and a DD with coeliac disease. My concern about using the term 'autoimmune diseases' is that there are a vast number of these (over 80 I believe) so it could cause confusion if, for example, parents of children with Addison's disease, lupus or rheumatoid arthritis were looking for help and advice.

Can I ask what the definition of an allergy is then (other than "I can't eat this food/food group because it makes me unwell) and why it's annoying to have to explain that it isn't one?

Totally understand if you're fed up of explaining but hopefully someone might see this who isn't!

(I think the renaming is a good idea especially if it helps clear things like this up)

hwhite6 Tue 28-Jan-14 18:51:53

I agree the name should be expanded, "allergies" alone is not right/enough. I've got various allergies, (oral)Crohns & an unknown (undecided as yet, but not Coeliac) in my house; so I post & look for help on pretty much most things these days!

trixymalixy Tue 28-Jan-14 21:35:08

Totally agree. My kids have allergies rather than intolerances, but lots of other posters are looking for advice on intolerances and coeliac.

trixymalixy Tue 28-Jan-14 21:39:08

Bertie, allergies are an immune response, whereas intolerances are digestive disorders.

freefrommum Wed 29-Jan-14 09:15:58

There are lots of differences between an allergy and coeliac disease. Firstly, allergies can be life threatening for some people if even a very small amount of the allergen is consumed (or in some cases, touched) whereas while a coeliac may become very unwell if they accidentally consume even tiny amounts gluten, it would not be immediately life threatening. However, if coeliacs continue to eat gluten they can have serious long term health problems including osteoporosis, infertility and even bowel cancer. It is possible to grow out of allergies and intolerances but coeliac disease is a life-long condition. The day-to-day issues are however very similar eg having to read every ingredients list very carefully, finding it difficult to eat out safely, having to often take your own food to parties etc. My DD gets fed up trying to explain what coeliac disease is so often resorts to telling people that she's allergic to gluten and wheat as they seem to be able to understand this concept better! She's very glad that she doesn't have to carry epi-pens around with her though like her little brother has to for his allergies.

Meglet Wed 29-Jan-14 09:23:55

Good idea. DS has the allergies and I have the intolerances.

greenbananas Wed 29-Jan-14 10:43:05

I think "allergies, intolerances and coeliac disease" would be a good idea. There are lots of the same issues with restricting diets and trying to find freefrom food (although those dealing with life threatening allergies are facing a very particular kind of stress). Also, allergies, intolerance and coeliac disease often seen to happen in the same family.

I don't think i want it thrown too wide though. I like this board being very specific. For me, it has been so valuable to meet other mums on here who are facing exactly the same issues, without having to explain ourselves to each other all the time.

I see - thank you for the explanation smile

undecidedanduncertain Wed 29-Jan-14 11:31:09

An allergy is when the immune system 'over-reacts' to something, causing symptoms, ranging from mild to life-threatening.

An auto-immune disease is where the body is triggered into attacking itself, destroying parts of the body. That doesn't happen in an allergy. So, with an auto-immune disease, the real danger comes from slow, persistent long-term damage, rather than the 'sudden' reaction of an allergy.

Coeliac disease is an auto-immune disease where the body produces antibodies in response to the presence of gluten in the small intestine. Those antibodies then attack the body itself - destroying the villi in the lining of the small intestine, which prevents the absorption of nutrients. People with coeliac have a whole range of symptoms if they eat gluten, and not just digestive ones, neurological symptoms are often involved and osteoporosis is a common one. Long-term undiagnosed coeliac disease can result in awful bodily damage and shortened lives.

Some people think that because there is no anaphylactic shock involved, that it is not very serious (like a very mild allergy) and they can be careless. When my 5yo son was 'glutened' at school (lunch staff gave him a dairy-free pudding instead of a gluten-free one), several staff members said to me that it wasn't too bad, as he'd just had diarrhoea and vomiting and was 'better now'. Well, they didn't see the D&V, because I obviously took him home - hours and hours of uncontrollable vomiting with gut-wrenching pain. But I was more worried by the fact they thought that's 'all' there was to it - the more serious internal damage would be caused by the antibodies that were released by his body.

I like the 'Allergies, Intolerances and Coeliac disease' suggestion - it's better than my original suggestion. I know it's wordy, but it is much more accurate. Alternatively, a separate 'Coeliac disease' topic would be an option. There are a constant trickle of MNers wanting to talk about coeliac, and it's not clear to them where to go.

MiaowTheCat Wed 29-Jan-14 11:54:10

I think it needs widening slightly - while the dietician refers to DD2's situation as an allergy - because it's non-IGE mediated I tend to refer to it as a severe intolerance... but then you get people who ate a curry once and felt a bit iffy so describe themselves as intolerant to chicken tikka masala and end up lumped in with them.

I'd probably put coeliac in here though - just because of the bank of knowledge people have regarding things like surprise free-from finds, recipe adaptation and keeping all of that together rather than spreading it out too thinly (people who've read labels and forums and might have picked up that X is free from Y and Z even though it's not directly relevant to their own particular allergy issue but is useful knowledge for someone else).

undecidedanduncertain Wed 29-Jan-14 12:10:21

Good point Miaow. Also, coeliacs and people who are gluten-intolerant or have a wheat allergy can and do all share useful information on this forum. So keeping it in one place is better.

I'm not suggesting any change to the forum contents. Just making the name of the forum represent the people who currently use it. I think that would also be helpful to people who are looking for somewhere to discuss these things and don't know where. They sometimes post on 'Food' but would get a bigger response here.

MiaowTheCat Wed 29-Jan-14 16:51:09

I think it's a bit of a hidden forum - could use being one of the ones with direct links from the talk homepage (do we really need a swine flu shortcut anymore) to be honest.

CalamitouslyWrong Wed 29-Jan-14 16:54:35

There are lots of autoimmune diseases that don't fit the category though. There are various autoimmune arthritises, for example, and the effects are not at all related to the allergies topic.

undecidedanduncertain Thu 30-Jan-14 09:15:14

Calamitously - OP here. Yes, I think you're right, 'autoimmune' isn't the right thing to add to the title.

I'm now very much in favour of greenbananas' alternative suggestion that it should be called 'Allergies, Intolerances and Coeliac Disease'. Her point that it's quite common to get all three in the same family is very relevant too, and supports the idea that it should all be one topic (which it effectively is at the moment).

Love the idea of a direct link to it from the main page too (replacing Swine Flu?)

KateSMumsnet (MNHQ) Thu 30-Jan-14 12:18:29

Hello everyone,

Thanks for all your feedback on this - so it looks fairly unanimous for 'Allergies, Intolerances and Coeliac Disease', is everyone happy with that?

We see what you mean about the Swine Flu things as well - we'll see what can be done.

undecidedanduncertain Thu 30-Jan-14 12:25:09

Thank you Kate, that's great news smile

greenbananas Thu 30-Jan-14 20:49:59

Yes, great news. I think "allergies, intolerances and coeliac disease" is a fair representation of what is generally discussed on this board (and it was freefrommum that first suggested this title [smile-] )

MiaowTheCat Fri 31-Jan-14 07:31:57

Well we could have a "man flu" topic where we can all complain about our fellas laying it on with a shovel when they have a bad cold...

undecidedanduncertain Fri 31-Jan-14 10:50:15

sorry freefrommum for robbing you of the credit - good suggestion!

freefrommum Tue 04-Feb-14 10:00:52

smile

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