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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.

LizLimone Mon 20-Oct-14 01:05:51

This was an issue for me too when I was first diagnosed, Tale and it was very hurtful. My family were skeptical about the diagnosis, refused to get tested themselves and tried to avoid the issue as much as possible. Friends were skeptical too, thought it was a fad diet and would go for lunch / dinner at places where I couldn't eat anything and roll their eyes if I sat there with nothing to eat as though I was being a drama queen. In reality i was just a bit shy about my diagnosis, not comfortable with asking for gf options and struggling to adjust. The lack of understanding really helped me sort the wheat (no pun intended!) from the chaff in my personal relationships.

Now, 15 years on, I'm more confident in asking about gf options, friends I now have only know me as my coeliac self so don't think I'm 'making it up' and of course awareness of CD has improved hugely too.

So I think YANBU to feel hurt by your family's disregard for your illness. You have to deal with skepticism and ignorance from random people, colleagues and so on every day, I'm sure, so it is not unreasonable to expect support from your family. It is hurtful, what they're doing.

It doesn't sound like they're going to change though so all you can do is change how you react to their behavior. You either stop it from getting to you and find ways to manage the situations before they arise or you just avoid eating out with then from now on. I find hunger makes everything 100 times worse by the way so maybe if you eat at home before you meet them for dinner that might reduce the impact on you.

Mariposa10 Sun 19-Oct-14 23:47:02

I have a relative with CD and when we go out for meals we always check whether the restaurant will cater for her because we want her to be there and enjoy a nice meal out.

I'm sorry for you OP that you family's choice of food is more important. If I were you I would arrange something where you choose the restaurant or if you can't eat there simply don't go. Do something you enjoy with people you can have fun with instead.

TalkingintheDaaaaaaark Sun 19-Oct-14 22:45:12

I think the main issue is getting your head around the fact your family really don't seem that bothered whether you can join in these occasions or not, or whether you will have a good time or not if you do.

At the moment it sounds like you're still trying to get something from them that they're clearly unwilling to give. And of course by any decent moral standards they should be willing to give that, as you say your attitude to your own DC is vastly different from theirs to you, but the fact is that they don't seem to care and there's nothing you can do to make them care.

You make allusions to a history of them being unsupportive as well, which isn't surprising. As for your mother determinedly feeding your gluten after your diagnosis when you were pregnant - wow. What kind of mother deliberately makes her pregnant daughter sick?

It sounds like this has been going on for long enough. It's not easy being a second class citizen in your own family. It's very painful to acknowledge that that's what's going on, to recognise the lack of power you have in this situation, but it's the only remedy ultimately.

From all you've said, I really doubt very much that anything you say to them will make them listen and care. I hope it's evident I absolutely don't think you're BU for being upset, but I don't think you're ever going to get what you want from them either.

Can you envisage starting to back away from them? Making them as low a priority in your life as you are in theirs? I know it's hard with family. But it's better than sticking with the role of the one who doesn't really matter very much, who gets treated like an attention seeking problem causer just for wanting to be treated with a basic amount of concern and love.

Like I say, you will find understanding over on the SH thread, although I'm glad to see some more supportive voices on here too. Thought I'd wandered into AIBU for a while there.

vodkanchocolate Sun 19-Oct-14 22:36:20

Hi, im really sorry you are going through this with your family. All I can suggest is you let them know how you feel, I think the fact you have now missed a couple of events someone should suggest something you can participate in even if its just at somebodys house.

I know how it feels not very close to my family my mum, aunties and sisters are very cliquey oftren see pics of what they get upto on fb im passed bothering x

QuintessentiallyQS Sun 19-Oct-14 22:29:12

Your family is being a bit shit. sad

For my dads last birthday I baked three yummy gf free cakes, no flour had been used in the kitchen at all. My aunt, is GF (and dairy free).

lisucbgiberiocnha Sun 19-Oct-14 22:22:56

I think there are alot of people on this thread confusing a mild gluten intolerence and being very very celiac. One is very easy to deal with on a day to day basis and can result in a little discomfort, the other takes alot of serious careful planning and can result in being ill for weeks

ddubsgirl77 Sun 19-Oct-14 22:17:25

Im with kew your family are dicks sorry! They could easy say yes we will go to x place to eat and include you but they wont, that screams alot to me that they dont really want you there sad we had this last year with in laws when they booked a meal at a place that wasnt really suitable but we went along after it caused a row the meal was shit was charged for stuff that we never got and cost us loads sad

Kewcumber Sun 19-Oct-14 22:00:07

When I have a family lunch for my birthday I choose somewhere that even my niece will find something she can eat - and she's just fussy!

Why wouldn't you want family to come celebrate your birthday and join in? confused

How severe your CD is is a red herring. Your family are being arses IMO.

lisucbgiberiocnha Sun 19-Oct-14 21:59:22

I eat gluten free but don't have to worry about cross contamination with chopping boards and knifes etc. However I do know people who are very sensitive celiacs and any cross contamination (no matter how small) can make them ill for a few weeks.

I care about my family and would always make allowances for medical conditions. My family has to eat somewhere that does gluten free meals (contamination not so much an issue for us) and vegetarian meals. We don't tend to pander to fussy eaters though as they can always eat something simple anywhere.

DeckSwabber Sun 19-Oct-14 21:48:28

Taletastic it sounds as if your family think you are 'putting it on' a bit, but the decent thing would be to try to meet you half way. Its them who are making it into a drama by forcing you to fit in or miss out.

I'm not surprised you are hurt by it.

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

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...

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.

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.

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

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.

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!

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.

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

If you're asymptomatic why is it a problem?

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.

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.

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.

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.

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.

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).

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