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I'm being excluded by family

(110 Posts)
TaleTastic Sun 19-Oct-14 14:16:09

Posting as I could really do with some perspective on this as I'm feel pretty low.

I have coeliac disease, diagnosed four years ago. Since diagnosis I've been consistently left out of family celebrations - birthday meals etc. There are plenty of places I can eat but the feeling is I should go and sit there while they all eat. If I don't it's felt that I'm being difficult.

The first year I was diagnosed, I went along for my mums birthday, sat there while they all went on about how lovely the food was and what a shame I couldn't eat it. I had roaring PND at the time and was struggling with the diagnosis, I got upset and left half way through the meal. Nobody got in touch with me for weeks, general consensus was i'd ruined the meal.

The second year it happened again. I asked if they could go somewhere I could be included and got into a huge argument with my sister who said I was being selfish and it's my mums birthday and she should be able to eat where she likes. I didn't go.

This year I got a text saying 'we're going to x I know it's tricky with your diet, let me know if you can come'. I replied saying the restaurant didn't cater for me and left it at that. This was two weeks ago - not heard from them since. Dinner was last night. Lots of photos on FB today saying what a wonderful time they had.

So AIBU to be upset? The illness is for life. I can't do anything about it. I just can't imagine a scenario where I would leave DS out of a family meal because of a health condition.

Im going to have to speak with them at some point but I'm at a loss as to what to say.

pippinleaf Sun 19-Oct-14 14:19:31

Sorry but it sounds like you are the one being difficult. I'm a veggie and quite often my family choose to go somewhere I can't eat anything (yes, the are still places that don't offer veggie food!). I usually ask the chef for a variety of the veg that are on offer. I'm sure if you rang in in advance you could even taken a Tupperware of something they could heat up for you. You've effectively stropped off too many times (I know you had reasons) and they don't see why they should stop enjoying themselves. Have you invited them somewhere you can eat? Do they know there are places, and what they are, where you could eat?

Goldmandra Sun 19-Oct-14 14:19:32

Can you really not eat anything at all from their menu? There's usually something that is naturally GF or can be easily adapted, even if you have to bring your own bread.

Have you tried speaking to the restaurant staff and asking what they can offer?

TaleTastic Sun 19-Oct-14 14:22:15

I called the restaurant to ask they said they couldn't do anything. Lots of places do cater but lots don't unfortunately.

Andro Sun 19-Oct-14 14:22:34

YANBU and your family are the ones being selfish. People who are fortunate enough to not have allergies/illnesses which dictate chunks of their diet have no idea how difficult it can be.

A quick suggestion though, it can be worth calling restaurants to explain about your condition and ask if it's possible for a suitable meal to be prepared for you. You may end up having to order your meal hours in advance, but a lot of restaurants are willing to accommodate things like GF.

Andro Sun 19-Oct-14 14:25:35

X-posts, it would be a shame if the restaurants refusal to accommodate gf were to make it onto twitter (how difficult is grilled steak/chicken/fish with salad or a large salad with something appropriate in it?).

TaleTastic Sun 19-Oct-14 14:25:56

Yes they are aware there's places I can eat in. If I arrange it, they come along. Otherwise it's pretty much always I can't eat.

I don't expect them to also eat where I can obviously as it's tricky. DS has allergies and I could imagine going somewhere where he couldn't join in.

Quitelikely Sun 19-Oct-14 14:26:28

If your diet is gluten free (is that right?) then there are lots of things to eat that are GF. Obviously not very exciting things but there's always going to be fruit and veg.

Similarly you storming off, I mean isn't that what a child does?

When it's your birthday you can choose a restaurant that you like and invite them all along.

Sorry I think yabu

Quitelikely Sun 19-Oct-14 14:28:13

X posted. So they do come along when you ask them to?

I don't think their choice of restaurant should be dictated by your dietary requirements. Lots of clean food available without gluten

TaleTastic Sun 19-Oct-14 14:29:34

I agree storming off wasn't my finest moment.

The thing is with coeliac and gluten if is they can't guarantee the cross continuation so even though they do veg, steak, chips etc it's usually been contaminated.

Goldmandra Sun 19-Oct-14 14:33:30

I called the restaurant to ask they said they couldn't do anything.

That's a shame.

One of our family has Coeliac Disease and we've never come across that. We often eat out with the wider family and he's always managed to find something that he can eat or can be adapted slightly.

If someone in our family regularly insisted on eating somewhere he genuinely could not be catered for, I would assume that it was him they had a problem with.

For most people, the fact that you're enjoying time together as a family is of primary importance. The food itself comes a close second.

There must be plenty of other places that would cater for you. Perhaps you could try taking your DM to some of them over the next year then offering to book one of them for her next birthday well in advance.

Wonc Sun 19-Oct-14 14:34:18

What kind of restaurants are they going to?

My father is Coeliac and I am vegetarian. We have never had any trouble finding something at any kind of restaurant, although admittedly we do often eat the Greek salad together.

It's less about the food than the company though isn't it?

We just fill up on wine

TaleTastic Sun 19-Oct-14 14:36:48

Thanks Andro lots of places won't take the risk. I've tried to do that. Been halve way through a meal and been told that sauce contains flour, we cook our chips in the same oil as wheat...then I'm ill for days. There are loads of places that do cater though. Loads.

Andro Sun 19-Oct-14 14:38:22

Then it's lazy practice - a one off, pre arranged meal should be possible by means of clean pans/counters/utensils/hands...and if the concern is storage contamination then environmental health would have a field day!

A restaurant incapable of preparing basics without contamination is worrying on too many levels to count.

(I have an allergy where micro contamination will hospitalise me so I feel your pain)

MoominKoalaAndMiniMoom Sun 19-Oct-14 14:41:13

"storming off"

- You were struggling to deal with a diagnosis
- You had PND
- You were upset and people were rubbing it in.

The people criticising you for removing yourself from the situation need to take a good long look at themselves, as do those claiming you're being 'difficult'. I wish people would realise that things like coeliac (and to some extent, gluten-triggered IBS/IBD) aren't just being fussy, or following a gluten-free fad.

Nomama Sun 19-Oct-14 14:41:47

But you can choose steak or fish and ask them to use a separate pan.

If you ask about cross contamination in a certain way they always say no... DSis just phones up, chats to the chef, and then goes, talks to the waiting staff and then orders something they all agree is 'safe for her medical condition'.

It does sounds as though you set an unfortunate image in their heads, OP. Storming out of that first meal is probably all but indelible now.

It is up to you to make this one work, I think. Good luck.

TaleTastic Sun 19-Oct-14 14:42:05

I agree - Pret for example have loads of GF food, even have a gf menu. They don't have good cross contamination though, so can guarantee for Coeliacs.

TaleTastic Sun 19-Oct-14 14:45:01

Thanks Moonin for getting it.

Mrsgrumble Sun 19-Oct-14 14:47:35

I think they at very hard on you. Just give them a wide berth for a while.

It sounds to me there is more than just th food that is the issue. It's the lack of support.

TaleTastic Sun 19-Oct-14 14:49:40

Fwiw my bil is in a wheelchair - would never dream of choosing somewhere with no disabled access....his company is more important than the food.. May be I'm unusual but I like to include everyone if possible.

LilAnnieAmphetamine Sun 19-Oct-14 14:49:59

It is not difficult to find something suitable to eat at virtually all restaurants when you have CD. I have never had a problem and sometimes I even take food with me when it is a large booking. I have never bothered to ask about cross contamination and it has never been an issue.

Andro Sun 19-Oct-14 14:52:09

I don't think their choice of restaurant should be dictated by your dietary requirements.

Sorry I think yabu

Quitelikely - Do you have any idea how painful, isolating and sole destroying it is to be excluded for something that it beyond your control? The restaurant has stated it cannot assure OP that a meal which is apparently GF will actually be 'clean', it would be lunacy for her to risk it if she is very sensitive to minute amounts of gluten.

I'll turn this around for you:

Would you consider the OP to be unreasonable if instead of gluten, the problem was wheelchair accessibility? Would it still be unreasonable to hope that her needs would be taken into consideration or would you respond that I don't think their choice of restaurant should be dictated by your accessibility requirements.?

TaleTastic Sun 19-Oct-14 14:52:51

People say this Lil but I've been ill a lot.

Yes a general lack of support is probably the bigger issue.

magicpixie Sun 19-Oct-14 14:56:18

when they text and said is x place suitable

did you say no how about y instead or did you just say no its not suitable

I think you might need to throw them a bone here or there

TaleTastic Sun 19-Oct-14 14:57:11

It is pain and isolating - and permanent.

There's lots if things I'm excluded from team lunches, work do's weddings, dinner parties. We were delayed for 12 hours coming back from holiday. They only thing I could find to eat was a banana. I just get in with it most if the time as I don't expect people to cater for me. Family though- I kind of do.

TaleTastic Sun 19-Oct-14 15:01:04

I said this where they are going. I tried to have a discussion last year...they're not interested

TaleTastic Sun 19-Oct-14 15:02:42

Sorry for poor spelling was on the bus

TinyDancingHoofer Sun 19-Oct-14 15:05:06

The poster above is right it is about the company not about the food. So the OP should go for the company and not the food. I don't think it is too much to ask to go once a year to a restaurant you can't eat in.

You sound a bit attention seeking and difficult. Just take a Tupperware of salad and enjoy the conversation.

P.s. My answer would be different if you were being excluded every week but once a year is a different situation. Maybe organises the birthday meal yourself next year.

Nomama Sun 19-Oct-14 15:05:33

Crikey!

Do you have a super nasty version of CD?

Others have said they don't have so much trouble, I know DSis manages to eat almost anywhere.

I am not trying to be nasty but is some of the problem that you personally have very high expectations, maybe because somewhere got it wrong and you were really ill?

Having said that, I can't imagine not being able to have a discussion with close family about it.

MrsMoon76 Sun 19-Oct-14 15:07:02

I am amazed that there is such an issue with restaurants not able to do something. Here in Ireland almost everywhere can cater for GF diets. Maybe that's because there seems to be such a high level of people with GF requirements. My db's gf has a serious issue and is very sensitive to gluten and we have all learnt to adapt our cooking styles and choice of places to eat so that she can come. DM has even found somewhere to get GF birthday cakes. I think its such a shame that your family is so intolerant. Is there one reasonable family member that you can talk to?

LilAnnieAmphetamine Sun 19-Oct-14 15:12:08

But I don't understand why you are excluded. I have never been excluded and neither has a close relative who has CD and is diabetic. Sometimes my choices are limited but I still go along and I take my own food because I am not excluded from the company and the pleasure of it. You sometimes just have to go and suck it up rather than cutting off your nose to spite your face and staying at home.

Wedding banquets- many of them ask about dietary needs. I went to one where the kitchen offered to prepare something when none of the options were right for me or another guest. They offered to heat up food we brought in or make something.

I have another relative who is lactose intolerant and she always makes it about her, even when she is in the presence of people with far more serious health concerns. It sucks the joy out of the occasion because I have yet to see a situation where she couldn't eat something perfectly decent. But she has to discuss it non stop and everybody ends up being made to feel guilty because they don't have a lactose intolerance. Are you sure you haven't in a small way, talked about it so much that it becomes all about you and you appear to be refusing to accept that sometimes you have to adapt?

This is NOT the same as being in a wheelchair. CD does not stop you from entering any eating place I have been in. There is always a way around it with planning (and yes that has to often come from you) which might seem unfair but life is not always fair. Contacting restaurants and explaining what you'd like is a great idea and I have found that most places are receptive to this. Even if they cannot guarantee a lack of cross contamination (and they won't guarantee this because NOTHING is 100%, not even your own kitchen), most will be happy for you to bring some food along in the worst case scenario.

TaleTastic Sun 19-Oct-14 15:14:10

tiny It's not one a year unfortunately - it's pretty much every time. Doesn't bother me most if the time but birthdays, Christmas etc it would be nice to be included.

Not sure if I'm especially sensitive...like I say there's lots of places I can eat no problem.

First year of diagnosis my mum glutened on purpose because she didn't believe it was a real thing. I spend Xmas day heavily pregnant and on the loo.,.

TaleTastic Sun 19-Oct-14 15:16:35

Alway bring my own good to weddings, dinner parties etc.

LilAnnieAmphetamine Sun 19-Oct-14 15:18:15

Most places serve pure protein and vegetables. It is about avoiding anything that can have hidden gluten. So eating food as close to its natural state means I have no problems.

TaleTastic Sun 19-Oct-14 15:22:18

I agree. I've used to opt for a jacket potato and cheese but would be ill. Realised they were plate it up next to a massive baguette that was touching it...

TaleTastic Sun 19-Oct-14 15:27:32

And no I never make a fuss. My digestive issues are not that interesting I dont go on about them at weddings and work lunches.

Wonc Sun 19-Oct-14 15:29:18

I think you are going to need to be more flexible. And relax a bit. Also, eat beforehand if you think there won't be food there for you. Is there any reason you can't just have a salad?
My sister's birthday recently was at a Chinese restaurant.
I have had very bad experiences with finding meat in my 'vegetarian' food. So I ate a bowl of rice. Just rice.
I can't remember what my CD Dad ate, but neither of us made a fuss because it IS about the birthday person's choice. It just is.

Yabu. Sorry.

sonjadog Sun 19-Oct-14 15:30:41

One of my closest friends has coeliac disease and has to be very careful, but he has no problem eating out. He just has a salad or asks for the meat without sauce or other wheat-containing stuff. It makes for some uninteresting meals but if he deals with it if he has to. Do you have an unusually severe version?

Andro Sun 19-Oct-14 15:32:14

LilAnnieAmphetamine

My Wheelchair analogy was in response to a comment about 'dictating restaurant choice', if an allergy (or CD or anything other diet based issue for that matter) is so severe that you can't risk a certain restaurant then you might be able to enter the premises but you're still excluded (more so if your family are rubbing your nose in the fact that you can't eat there). Sitting like a lemon because you can't eat (and not all places will allow you to take your own food!) feels lousy.

Family consistently choosing to eat at places which have clearly stated they are not in any way GF friendly is sending a clear message. That OP's mother deliberately put gluten in a meal after she was diagnosed sends an even stronger message

EBearhug Sun 19-Oct-14 15:35:32

We always managed to eat out as a family, even with a coeliac, back from the '70s, when nowhere catered for gluten-free. The family member did bring her own gluten-free bread to places, but other than that - well, there were lots of vegetables and salad and fruit and stuff. I don't ever remember it being that big a deal, and there's far more gluten-free food available these days than there was 30 years ago.

I agree that families should take account of it, because it's not impossible to cater for it these days. And work as well, to be honest. The last work meal I went to, we had a long conversation about gluten-free catering; the gluten-free person next to me had fewer choices from the menu, but no fewer than me who doesn't eat fish just because I don't like it. I think your family are trying to include you, by asking if you can go to a particular restaurant - did you just say no, or did you look at the menu to see what was available? It really is unusual to find nothing at all these days. Perhaps they could be doing more to accommodate your needs - but are you doing as much as you can to meet them half way? Do they understand how you will suffer if you eat gluten, that you're not just being picky, that it will actually make you ill?

I think I would go to my family and say I was wrong to have stormed out, and I apologise for that, but I feel hurt because it feels like I am being excluded because I can't share a meal. I'd then offer a list of suitable places I could eat at, having researched the menus in question. That might not mean they will choose those places, but it gives them a starting point.

(OK, actually I wouldn't go to my family about it, because a) it's okay in my family to talk about what you can't eat, and that will be accommodated, and b) we wouldn't talk about feelings and emotions. I might go on about the social importance of shared food throughout history, and possibly witter on about shared meals in the Bible, but then there are a lot of academics and Christians in my family, and we're not necessarily normal...)

bloodyteenagers Sun 19-Oct-14 15:41:45

Who did you speak to? Have you called them more recently?

TaleTastic Sun 19-Oct-14 15:46:43

I work in the nhs so highly unlikely to accommodate me! Getting food for a coeliac patient usually takes a least two days. I've bought gf food out of my own money before for coeliac admitted to the ward.

I did call the restaurant and ask - they said they couldn't cater for me. Lots of places will make more effort at quiet times but not when they are busy. That's fine, I would rather they were honest than get ill. I've suggested places before - their not interested.

andro it feels very much like a message and not a very nice one.

LilAnnieAmphetamine Sun 19-Oct-14 15:47:23

A person deliberately contaminating your food with a substance you are allergic to is a separate issue to not feeling included at restaurants where it is possible to join in and be included. This thread is full of people saying they have digestive issues and diseases yet still manage to go out and enjoy themselves.

It is about family relationships far deeper than not being able to order anything on a menu.

And sorry but it is still NOT anything like your wheelchair being unable to gain entrance. The restaurant itself is not making life difficult - it is her relationship with her family. And if it wasn't this, it may well be something else because people who disregard on one thing, will disregard on another.

TaleTastic Sun 19-Oct-14 15:52:17

It doesn't feel like a separate issue tbh. They've never been supportive or accommodating and continue to be unsupportive and accommodating.

TaleTastic Sun 19-Oct-14 15:55:13

There are loads of places I can happy eat in - loads just not everywhere.

Coffeeinapapercup Sun 19-Oct-14 15:55:18

Coeliac is very different from gluten free and much harder to accommodate.

I agree with the option of bringing your own food (sadly) but really I'd wonder why you'd bother for such a load of selfish intolerant pricks

Mintyy Sun 19-Oct-14 16:03:51

I think op must have a very severe allergy to wheat if she can become ill simply from having a piece of bread touch whatever she is going to eat. I expect there are many restaurants who would hate to be sued if they caused a bad reaction in a diner and this is why they won't guarantee there can be no cross-contamination.

Have you suggested alternative local restaurants that can guarantee no cross-contamination op?

FurryDogMother Sun 19-Oct-14 16:11:17

Regarding the bread touching the potato making you ill - I would be more suspicious of the grated cheese on the spud, it often contains some kind of flour to keep the bits from sticking to each other.

TaleTastic Sun 19-Oct-14 16:13:07

Thanks Mintyy I have suggested eating elsewhere, plenty of options - went down like a lead ballon.

It's not an allergy to wheat but an autoimmune disorder. If I eat gluten, even trace amounts my body attacks itself and kills bits off.

TaleTastic Sun 19-Oct-14 16:15:18

Did ask about the cheese. It's was just big standard cheddar. It was with the baguette or they put the jacket on a bread board. Either way it was not good.

TaleTastic Sun 19-Oct-14 16:15:56

Big not big

TaleTastic Sun 19-Oct-14 16:16:13

Bog bloody autocorrect

Nomama Sun 19-Oct-14 16:18:32

Thinking about it, TaleTastic... if you haven't managed to discuss this with them, do they too think you 'merely' have a wheat allergy and are being all Princessy?

As I said earlier, I can't imagine not being able to talk this through with your family, DSis had a number of stern talks to parents after a few misunderstandings (yet she still manages to feed me beansprouts and you really don't want to do that).

But it really does sounds as though a mistaken perception of you and your eating has solidified and is making it easy for them to disregard you!

What do you think you could do? No contact? Another attempt at a family talk? Sod the, one and all?

TaleTastic Sun 19-Oct-14 16:29:04

I have explained it to them numerous times. My dad has diabetes so I came at it from that angle.

The specialist recommended my extended family were tested as it can be genetic - standard practice with coeliac disease. The response was 'oh no, I couldn't do that. I love bread, pasta, Yorkshire pudding...whatever to much'.

Wrapdress Sun 19-Oct-14 16:29:30

Just eat before or after so you can at least enjoy their company. I don't see you as being excluded. It sounds like you are invited to this outings. You don't have to eat there. (Similar to someone who doesn't drink going our after work to Happy Hour. Just because you don't drink doesn't mean you can't go.)

TaleTastic Sun 19-Oct-14 16:39:27

Tbh after four years of being left out when there are plenty of places we could all eat it together, I don't particularly enjoy their company that much anymore.

When my nan was alive we always went somewhere that served the food she liked. She was a pretty adventurous eater for a woman in her 80's but had her limits so we stayed within her comfort zone.

Quitelikely Sun 19-Oct-14 16:43:34

Most restaurants have food that is gluten free. Meat, fruit & veg.

Your family know this. You might not like it if the restaurant doesn't have a GF menu but that's just hard luck.

And comparing this to being in a wheel chair is poor. The previous government did an enormous amount of work in legislating that doors must be wide enough in public places, with lifts provided for upstairs access and also space for wheelchair access on public transport. You can go into a range of shops and buy GF food.

They aren't excluding you, you just want it to be certain restaurants and they won't give in to it.

TaleTastic Sun 19-Oct-14 16:44:50

There is NO WAY I would ever had arranged a meal for myself or anyone else and left her sitting at the table with nothing. That would be pretty shitty surely?

LilAnnieAmphetamine Sun 19-Oct-14 16:45:26

Well if they love their bread and pasta and it isn't causing them symptoms then I can relate to their not wanting to submit to tests- and yes I understand the implications of not addressing asymptomatic CD. Not everybody is that bothered about proactive health care sadly.

Sometimes asymptomatic CD, when you start to exclude gluten can trigger a reaction to it if you then accidentally eat it after months/years of exclusion. It is an odd condition.

If you don't enjoy their company then don't go out with them. As we get older we make our own families anyway- spend time with people who you like to be with. smile

fredfredsausagehead1 Sun 19-Oct-14 16:47:50

Maybe they think you're blowing your illness out if proportion. I too am coeliac it's no big deal.

Maybe tog should have said you would joking them at the end of the meal for a stink and company

Viviennemary Sun 19-Oct-14 16:49:21

Since meals only happen infrequently why make a big thing of it. Walking out in the middle of a meal wasn't great. Why not just don't go for the meals and arrange to do other things with your family or ask them round to your house. I think you're making a bit of a problem about nothing.

Fluffycloudland77 Sun 19-Oct-14 16:53:38

YANBU.

TaleTastic Sun 19-Oct-14 16:54:50

Meals are pretty frequently, probably monthly. I don't expect them to accommodate me but birthdays etc wold be nice. I do have them over to mine. No walking out wasn't great *moomin' post pretty much covers that experience though.

Whocansay Sun 19-Oct-14 16:57:22

Could you not just go along, but eat beforehand? You wouldn't miss the social side that way.

AlmaMartyr Sun 19-Oct-14 16:58:28

That sounds horrible TaleTastic. A good friend of ours has CD and can't eat contaminated food. He comes to dinner with us (at our home) quite a bit and I'll admit it is a bit of a pain to clean the kitchen and utensils sufficiently, come up with a suitable menu etc but I do it because I love seeing him and enjoy his company. I wouldn't dream of excluding him. I understand that here might be times like a birthday when the person celebrating should get to choose but every time is pretty harsh and seems very unfair. Could you ask if you'd be welcome if you brought your own food with you? Although I can see why you don't want to go to the effort at this point. You have my sympathy, it's a miserable condition from what I've seen.

FWIW, DH is gluten free (IBS) and doesn't have a problem but he doesn't have to worry about contamination because he can eat a small amount of wheat and that makes it massively easier.

Coffeeinapapercup Sun 19-Oct-14 17:00:14

It's a bit like telling an alcoholic you'll meet them in a pub that doesn't sell soft drinks.

But it's ok because they can have a soft drink beforehand or bring their own soft drink if they must.

I don't care whether someone is overblowing an illness or not, it's more important to me that everyone in a family is there and happy

Coffeeinapapercup Sun 19-Oct-14 17:01:31

They sound vile

LilAnnieAmphetamine Sun 19-Oct-14 17:03:14

Well you could always book a restaurant you like for your birthday and invite them. If they then refuse to come then fuck them- they don't deserve your company.

Branleuse Sun 19-Oct-14 17:03:50

i feel sorry for you. I know with coeliacs its not just a gluten intolerance, its almost an allergy and you cant even risk contamination.

I certainly wouldnt choose anything with sauces, and I wouldnt choose cheese, as ready grated cheese will often be dusted in flour to stop it sticking.

I think as time goes on, you will get more used to it and find things you can eat, or ways that you can still socialise. I bet you feel really let down by them

Altinkum Sun 19-Oct-14 17:04:10

Message withdrawn at poster's request.

AlmaMartyr Sun 19-Oct-14 17:18:06

My friend has found that a lot of restaurants don't cater for coeliac so I don't think that's odd. Maybe depends where you live as well, most restaurants where we live barely even cater for veggies.

I agree with Coffeeinapapercup too, it is important to me that people I care about are present and happy, even if they are making a fuss about nothing (which I don't think OP is).

TaleTastic Sun 19-Oct-14 17:21:00

'alma' you sound lovely - i have lots of wonderful friend who do the same for me and it's always appreciated but never expected.

Thanks 'Branleuse' I do feel let down. It's a pretty shitty feeling.

'coffee' i couldn't agree more.

And yes i have asked i rang the restaurant - not all places can cater but there are plenty of places that do.

TaleTastic Sun 19-Oct-14 17:23:02

Thanks 'alma' i feel like i'm living in some sort of parallel universe. I live in London - so countless options but not surprisingly not everywhere caters and they don't have to - it's not the law.

Coffeeinapapercup Sun 19-Oct-14 17:33:08

And I'm sorry but a mum for whom its more important to have their own choice of restaurant than whether their daughter is ill or well

And that's ok?

I think I'll give up on humanity now

TaleTastic Sun 19-Oct-14 17:37:39

I agree. DS has allergies. I can never imagine a scenario where I leave one of my children out because if a health condition. It just would t be a family meal for me if he wasn't fully included.

duhgldiuhfdsli Sun 19-Oct-14 17:38:41

The specialist recommended my extended family were tested as it can be genetic - standard practice with coeliac disease. The response was 'oh no, I couldn't do that. I love bread, pasta, Yorkshire pudding...whatever to much'.

That's a perfectly reasonable response. The chances of their being coeliac at all are low: 5% for parents, siblings and children, about 2% further out. The chances of their being asymptomatic coeliacs is a fraction of that. The tests aren't wildly accurate. The consequences of a positive test are significant: for a start off, they'll find getting travel, health and life insurance significantly more complex. The chances of that positive test being accurate are quite low. The chances of that positive test, even if accurate, substantially improving their health outcomes over waiting for symptoms are unknown, but not massive. I wouldn't take a test on that basis.

TaleTastic Sun 19-Oct-14 17:51:06

I know the consequences of the test are significant - I live with them everyday. On top of all the other stuff that comes with it, is being excluded from family social occasions.

I was asymptotic and diagnosed by chance. Bowel cancer runs in my family and is probably linked but whatever it's their health and up to them. I was just passing on info that could protect their health. Up to them
what they do with it.

Saying I couldn't do what you do because I love bread, makes it sound like a choice.

I love bread too but so what? Doesn't change anything.

TalkingintheDaaaaaaark Sun 19-Oct-14 17:52:37

Hear hear, Coffee.

Time to look at the Stately Homes thread, perhaps, Tale? You'd find a warm welcome there.

LadyLuck10 Sun 19-Oct-14 18:07:02

If it's so difficult to find places that will cater for you then what are the places that you suggest to them as according to you there seems to be limited restaurants?
I don't think that they're excluding you, because you still have options if you really want to join in. By storming out you did make an issue so maybe they just don't want do deal with that at every meal get together? Sorry but I think yabu.

duhgldiuhfdsli Sun 19-Oct-14 18:12:44

Saying I couldn't do what you do because I love bread, makes it sound like a choice.

If you're asymptomatic, it's a choice.

Jengnr Sun 19-Oct-14 18:13:46

What's happening to Mumsnet this week? I've seen a couple of threads today where the OP is just getting attacked.

This board is supposed to be supportive isn't it?

OP, I think it's really shitty of them to do that to you. But tbh if that's how they behave I'm not sure they're worth your time.

TaleTastic Sun 19-Oct-14 18:19:23

It isn't difficult to find places that cater for me - that's the point.

And yes I suggest alternatives last year and was met with a barrage of abuse from my sister about being me being selfish - which is ironic really given we accommodated her needs for years when she was a skint single parent - I always chose places she could afford or paid for her.

AT NO POINT did I suggest she should eat at home then come along and watch us tuck, in while we all comment on how nice the food was what a shame it is she couldn't afford to eat here.

'talking' I think I will do that... i'm feeling rather exasperated by this thread.

TaleTastic Sun 19-Oct-14 18:20:46

'Duhgl' - not if you have a diagnosis it isn't.

Looseleaf Sun 19-Oct-14 18:33:21

I have coeliac disease too and it isn't easy initially but becomes second nature (most of the time) once you stop missing things and less emotive with time. I understand both perspectives and also think you should direct your concerns to the restaurant - I don't remember ever not finding something to eat even if it's a side salad. I think the issue may be more to do with your relationship with your family, do you feel unsupported at a difficult time and maybe they don't understand this?
I'd try not to blame them and just accept that many people won't understand coeliac as it hasn't affected them. Some of my friends are wonderful and thoughtful around the issue, others are great friends and still forget but I anticipate this and quietly bring food when I need to in case (and explain why I'd it might seem rude).
Sorry this isn't easier though, my family were the first to understand and always remember and I know yours could be more thoughtful but it should come from them and can't be forced unless you have a gentle conversation?

Mintyy Sun 19-Oct-14 18:35:19

Is the op being attacked?

Andro Sun 19-Oct-14 19:01:03

Is the op being attacked?

Maybe not attacked as such, but certainly being belitteled by quite a few posters.

Attitudes of:
'I have CD and don't have a problem' - good for you, the OP has.
'I too am coeliac it's no big deal.' - to you maybe, clearly OP is having a different experience
'Just go for the company even if you can't eat' - nice...not!

(all multiple times)

And my personal favourite:

'You need to be more flexible and relax a bit' - Patronising beyond words and frankly potentially dangerous to someone who's condition - CD, allergy, IBS or whatever - is serious enough as relative ease only comes with years of experience. They are the words of someone who has never ended up in ICU or with days of gut trouble because of their condition, the also signify the kind of attitude which makes care to the point a paranoia a necessary part of staying alive for people with severe dietary problems (I've had the same thing said to me when I've been double checking that meals are safe for me, I've also landed in ICU because it was believed that I was being too strict and needed to chill out a bit).

duhgldiuhfdsli Sun 19-Oct-14 19:34:17

'Duhgl' - not if you have a diagnosis it isn't.

Yeah, it is.

Monday: you have undiagnosed asymptomatic coeliac disease. You eat bread. Nothing happens.

Tuesday: you are diagnosed.

Wednesday: You eat bread. Still, nothing happens.

Mintyy Sun 19-Oct-14 19:39:11

I prefer to think she is not being attacked but other people don't really understand quite how serious the condition can be.

Its the same with all allergies.

TaleTastic Sun 19-Oct-14 19:45:43

You're right. It is mintyy

Nothing happens symptom wise but your gut is still being attacked, hence the positive biopsy.

TaleTastic Sun 19-Oct-14 19:58:03

'Andro' - sorry that happened to you. I've had patients end up in ICU from anaphylaxis. Seemed fine one minute then got a secondary reaction, it's a pretty frightening experience.

fredfredsausagehead1 Sun 19-Oct-14 20:03:11

It is hard to terms with but by being resilient and taking control of the problem, taking charge of the illness and bit expecting special dispensation, things may become easier. Everyone had difficulties, many have allergies and much much worse illnesses to deal with. That's how I deal with it, never as a victim.

Summerbornmum Sun 19-Oct-14 20:10:18

If you're asymptomatic why is it a problem?

TaleTastic Sun 19-Oct-14 20:21:36

I was asymptomatic at diagnosis, gave up gluten, now get symptoms. It's common and just how the body works.

Just because you are asymptomatic, doesn't been your body isn't being damaged. Lots of coeliac's are picked up in fertility clinics. No 'symptoms' but the damage is being done, it just presents in a different way.

RubySparks Sun 19-Oct-14 20:33:56

Tale I also have coeliac disease and been diagnosed for similar amount of time. I have some supportive family (DM will make me gf Christmas cake) and unsupported family (Visiting DS - oh I don't know about the biscuits - meaning she gave no thought to my visit and they were ordinary wheat biscuits). also had unsupportive friends (Are you still doing that? and How 'good' do you have to be?) and supportive friends (bought gf biscuits just for me going round).

It makes a massive difference to have some support. Anyone who has tried and failed to stick to any kind of diet should understand how hard it it. You don't have a choice to eat this way and it is hard eating out in restaurants where what you can eat may be very limited (chicken salad again).

Some restaurants are much better than others at dealing with it, the kind of restaurant where food is bought in preprepared generally can't offer many options e.g. Where chips are coated with flour or fried with flour based food, I have been told 'I will see if the kitchen can find a potato'! They didn't... Salad again. If I know I will be eating somewhere I call ahead or email and check what options I might have.

I have found it hard to speak up in restaurants as I feel like I'm perceived as being fussy so now I tend to state I can't eat certain things to make it clear it is not a choice but treatment for a disease. If it is with friends offering cake or whatever (they forget) I say I would love to, but I can't.

I think try again with family if the meals are not that frequent and plan ahead as much as you can. I think the emotional and psychological impact of the condition is underestimated by other people, sharing food is a social and nurturing thing so to seemingly reject it seems upsetting to those offering and being offered what you can't have is equally upsetting!

Goldmandra Sun 19-Oct-14 20:43:49

If you're asymptomatic why is it a problem?

The symptoms are still there. They are just not apparent. Gluten causes serious damage to the gut. It prevents you from absorbing important nutrients and massively increases your risk of cancer for a start.

Once the gut has recovered due to the GF diet it can react much more strongly to very small amounts of gluten. This reaction is painful and unpleasant.

LilAnnieAmphetamine Sun 19-Oct-14 21:13:54

CD does NOT cause anaphylaxis. The official sites and gastroenterologists are clear on this. It is NOT an allergy.

"ymptoms of eating gluten, or being ‘glutened’, include headaches, diarrhoea, stomach pains and lethargy. The reaction is not the same as an allergic reaction and does not cause anaphylactic shock. The symptoms may last from a few hours to a few days.

Coeliac disease is known as a 'multi system' disorder – symptoms can affect any area of the body. Symptoms differ between individuals in terms of type and severity."

Coeliac UK

MaryBerrysLostCherry Sun 19-Oct-14 21:27:07

Just because you do not have symptoms doesn't mean your gut isn't being damaged. Enjoy your bread knowing it's damaging your intestine and you are storing up future problems which may include bowel cancer, osteoporosis, infertility and god knows what all else. It's worth it.

My DD has coeliacs. She is 5. She is often excluded or sidelined, sometime unwittingly, and it boils my piss. Your family are utter, utter cunts.

MaryBerrysLostCherry Sun 19-Oct-14 21:30:25

Ps I am gf now through choice to support DD so she doesn't feel different in her own home. That's what you do for your children.

TaleTastic Sun 19-Oct-14 21:46:01

Couldn't agree more mary

Ds has allergies and I've lost count of the amount of times I've gone to pick him up and discovered the class has had treats and he's been sat there with nothing as they all tuck in.

It breaks my heart to think of his little face queuing up with the other kids and getting turned away. But it happens all the time with dietary restrictions and can't always be avoided. I get that, which is why I feel even more strongly that your family of all people should include you...

darlingfascistbullyboy Sun 19-Oct-14 21:47:07

my mum (62) has just been diagnosed with CD - she has NEVER had bowel symptoms (until she went GF - more on that later). She developed Hashimoto's thyroiditis 3 years ago (another autoimmune disease) and since then her health deteriorated & after being investigated for everything under the sun Coeliac Disease was diagnosed sad

Now she's been gluten free for a couple of months she's exquisitely sensitive to gluten & the tiniest microscopic contamination makes her extremely unwell (pain, diarrhoea etc). She's just been diagnosed with osteoporosis & chronic anaemia (despite the world's healthiest diet) as a result of chronic malnutrition caused by her gut not being able to absorb nutrients as bits of it are being destroyed by her immune system. Oh & there's the ever present fear of cancer being caused by god knows how many years of gut inflammation & damage.

So yeah perhaps OP should just 'relax a bit' hmm

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