I'm being excluded by family

[TaleTastic]

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.

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.

Hear hear, Coffee.

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

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.

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.

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.

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.

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

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?

Is the op being attacked?

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).

'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.

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.

You're right. It is mintyy

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

'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.

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.

If you're asymptomatic why is it a problem?

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.

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!

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.

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

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.

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.

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...

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 :(

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'

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.