To expect my friends to understand that I am a Coeliac

[Reredos]

Basically these are two female friends that I have known for 20 years. We meet up with their husbands every month or so for dinner and we often go for weekends away. I have been recently diagnosed as having Coeliac disease through a gut biopsy but a mutual friend was diagnosed two years ago. I have heard what they say about the Coeliac friend, how she is attention seeking and is loving the drama of having a special diet. I am probably closest to this Coeliac friend and had researched the diet so that I could offer her safe food and also support. this actually meant that when I was diagnosed it wasn't such a big thing for me as it knew so much about it.
The first thing one of these friends said to me when I told her I was diagnosed was 'I hope you are not going to be all silly about it like xxx'
I have tried to explain the danger of contamination with them but they refuse to accept it. Everyone seems to know a coeliac person (probably a gluten-intolerant) who eats cake every now and then and 'just deals with the consequences'
We have one of these trips away booked for New Year and I am frankly dreading it. I will take my own food but they will see that as a slur or that I am trying to draw attention to myself. They couldn't be more wrong. I hate being different. I have no problems with following a gluten-free diet at home or when going out with my family. It is so easy to buy gf food in all of the supermarkets and I actually prefer to just take a sandwich in my handbag and not make a fuss.
I am getting unreasonably anxious about this and I need a coping strategy.
The weekend will involve at least one posh restaurant meal and fish and chips on the beach. I know they will say that I can have the chips because they are just potatoes but, if I then say that it's not recommended due to contamination of the oil by battered products, it will result in melodramatic eye-rolling and being told to get a grip.
The husbands of these women are lovely. I don't think that they really understand the contamination issue either but they are not judgemental. My husband gets on well with all of the group and his advice is to not worry about it until it happens and that I can take my own food and that there will always be something on the menu that I can eat.
It doesn't help that I am a vegetarian. I know that this is a self-imposed restriction but, after 40 years, I can't change. I can manage to eat some fish and I have tried to eat meat (by putting tiny pieces of chicken in rice) but I hate it and I shouldn't have to eat meat (or gluten) to keep everyone else happy.
Am I being unreasonable? Should I eat whatever is prepared for me at friends houses/restaurants and 'deal with the consequences' however detrimental to my health could be?

Windchime, I was diagnosed when I lived abroad, so it is not on my NHS medical record. Doesn't change the diagnosis though.

It might help to know that from 13 Dec all UK food establishments have to be able to provide full details of any allergens in their food. These 14 allergens include gluten.

I care for a child who is gluten free and all the children eat gluten free meals happily, so she is not at risk of cross contamination. It is so easy after a little research and your friends should be more than capable of seeing that your dietary needs can be addressed without making a fuss (sounds like they make more fuss than you do).

They are thinking that you are allergic rather than it being an autoimmune condition. Would they tell a diabetic it's ok to miss a meal ?

I agree with you Primallass.
I know there are people who are on a different exclusion diet every week. But gluten intolerance non coeliac is a very real diagnosis. My DS looked like he had kwashiorkor when he was 6, till I took gluten out of his diet. After that he thrived, and he is definitely not coeliac

Primallass if you read my full sentence rather than taking an excerpt out of context to froth at you'll see that I provide the following as context 'I know several people who 'can't eat wheat' but regularly consume gluten-containing foods, so I'm not sure exactly what they're avoiding.'

If your DC is being sent for a gut biopsy then it's clear that you GP does suspect a gluten reaction - it's perfectly possible to be a coeliac and test negative to blood antibodies which is why a gut biopsy is required and this is what your GP is pursuing - a medical diagnosis, so you clearly don't fall into the category of the 'fashionable' wheat-avoiders who happily eat gluten. But by all means be offended if it keeps you happy.

At no point did I suggest that non-coeliac gluten intolerance does not exist. I suggested that there is a section of society who happily consume gluten but avoid wheat for no medical reason and this does undermine the seriousness with which society takes our condition - feel free to froth

Thank you Brere for offering a different perspective (one that is undoubtably shared by my friends). I felt anxious because I am actually quite an introvert whereas they are both very much the opposite and I am very aware of how intolerant they are of our mutual friend. I have questioned them about this and they say that said friend deliberately draws attention to herself and her plight. They have also said that they are impressed that I don't make a fuss and that I have adapted so well. I honestly don't see my diet as a problem and my anxiety is probably because I don't want to be seen to make an issue of it when we are together.
Now that it has been questioned, I am not sure why I value their friendship so much but my husband does and we have known each other a long time. Our children have grown up together and we live in a small village so it is important. They all came for dinner at ours on Friday. My husband cooked three meaty Chinese dishes and I cooked three gf, vegetarian ones. I prepared enough for everyone to try but they all politely declined. Apart from the rice dish which they woofed down but I didn't mention that that was gf!
My lovely adult DS described them as shallow and self-centred. He is quite right but they are good for a laugh (when not at other peoples' expense).

The lovely people on this thread have provided me with coping strategies (and pastry recipies!). I was having a little wobble and wanted to know if I was being unreasonable. I will now be prepared, can plan ahead and I can actually look forward to enjoying the weekend.

The other positive to being gf is that I can now drink alcohol. For the last few years even a sip of wine would cause awful sinus headaches. These friends are very heavy drinkers (you are not surprised!) and whilst I will never be able to keep up (or even want to) I can now share a glass of champagne and not be different in this way.

Bleurgh, they sound horrid. But I get 'fun' friends you couldn't trust further than you could throw them. I have a few of those - shocking, but fun.

When you're feeling all anxious (p-l-e-a-s-e don't feel anxious about them, they're not worth it!), just remember how horrid and shallow they are, like screeching caricatures. Good for a laugh but aside from that not much else.

And tell em to fuck off if they start the sneering. Gwan, you can do it

(I hate that you cooked them all that lovely food and they were sniffy about it. vile cows)

I am a bit shocked at Windchime's level of ignorance. My DD has suffered horribly with IBS. Medical help has consisted of a couple of blood tests, a camera down her throat and a diagnosis of, "We don't know what's wrong with you, just take these pills indefinitely".

Off our own bat we have eliminated certain foods from her diet, and got to the stage where, two years later, she is pretty much off the pills. She has no formal diagnosis of lactose or citrus intolerances though; our GP's reaction was, "Great, if that's working for you then carry on". I doubt anything formal will have made it's way into her medical record.

How lovely to know that if she ended up on Windchime's ward she would spend the week on plain baked potatoes.

Windchime you are horrible, and that's exactly the attitude I fear encountering in hospital if I'm ever an inpatient.

I also would just cook everything Glutenfree and not draw attention to it. Till afterwards.

I'm going off topic here but if I went to a friend's house for dinner I would make my dietry requirements known. I don't have any food allergies or intolerances but as a grown up I know what I really don't like to eat - sea food. I can't even stand the smell. I cannot imagine any friends hearing me say that then cooking it for me so if you've said you're gluten free even if it's not a proven medical thing why wouldn't a friend cater to that? baffling.

Tbh windchime although I've just tested negative for coeliacs via biopsy, the state my digestive system is in at the mo, I'd more than happily live on plain jacket potatoes for a week if it would take the pain, cramps and constant bloating away. And I think you really need to look at your place in a caring job if you think that kind of attitude is acceptable.

I think OP you are doing absolutely the right thing to find out in advance what there will be for you and then it's not an issue for your 'friends' to get worked up about.

It sounds like you are not going to be making a big fuss about the food anyway, so I'm sure your friends will be fine about it. Maybe your other friend has made it into a big issue every time they meet up.

I do think the many people who go in for every dietary fad going, sort of dilutes the seriousness of what you have, in other peoples eyes. You might need a discussion about what the disease actually entails, because not many people really know.

One of my friends got tested for allergies from a fingertip blood sample at a health food shop. Every time we ate out she would would quiz the waiter and sometimes the cook about every single item on the menu - it had to be vegertarian, gluten, diary free etc. etc. She always ended up ordering something that was not on the menu. I would not have minded, but she would then finish off her meal by having normal chocolate ice cream - which certainly was not dairy free !!!

If your DC is being sent for a gut biopsy then it's clear that you GP does suspect a gluten reaction - it's perfectly possible to be a coeliac and test negative to blood antibodies which is why a gut biopsy is required and this is what your GP is pursuing - a medical diagnosis, so you clearly don't fall into the category of the 'fashionable' wheat-avoiders who happily eat gluten. But by all means be offended if it keeps you happy.

She isn't being sent for it. They barely followed up after her blood test. So 1.5 years later she is still ill. With a grandad who is coeliac, uncles on both sides with severe intolerance (gut and joint), a father who gets joint pain, gut pain and red-hot knees when he eats wheat, and me. I am one of the 'fashionable' wheat-avoiders you talk about. It makes be sore and bloated but I don't think for a second that I have coeliac disease. I won't 'happily eat gluten' but if I do it won't kill me, so sometimes it is easier at the time even though I will be in pain the next day.

Lots of 'intolerance' to wheat on both sides of our family, but only one diagnosis.

avoid wheat for no medical reason and this does undermine the seriousness with which society takes our condition - feel free to froth

I don't need a medical diagnosis to tell me what wheat does to me, and I couldn't get one if I tried anyway.

windchime

As a nurse, I am always very suspicious of any patient who announces they have a random allergy or digestive condition (without any mention of it in their notes). It is usually because they want the hospital kitchen to prepare them a jacket potato. I take great pleasure in serving them a plain baked spud for every single meal until they are discharged. The point I am trying to make is that there are many people out there who decide they have an allergy or condition, just for the drama and attention. And lots and lots of us are very tired of it indeed.

I'm not the only person to be absolutely horrified by you post, Wind chime. How would you deal with me? I have Crohn's Disease, and what I can or can't eat (even if I can eat at all) very much depends on whether I am flaring or not, and how bad the flare is. YOU may be very tired of it indeed, but I have lived with and manages this disease to over 20 years, without having to have surgeey, and I know how my bowels will react to food far, far better than you do. Of course if you'd like to feed me food that will keep me in hospital longer, feel free. I'll take great pleasure in covering you in blood & diarrhoea in return.

looong story for me. A&E doctor decided I had a variety of gluten intolerance that affected the skin. My GP only took blood tests when I had been avoiding gluten for over a month. There was a negative result for coeliacs. According to the Dermatologist I have just plain eczema that is due to varicose veins. I have no official diagnosis.

However if I avoid gluten I also avoid scratching my skin off. I have gluten then I scratch convulsively - actually like a spasm. It once took me twenty minutes to sign in to a web page because I couldn't control myself to put in the password. No gluten, no itch. I wish I could get a doctor to believe me.

I suggest that you pick and choose when you meet up with these friends. Can you trust them not to spike the food with crumbs when you meet?

I also have a gluten intolerance, but not ceiliac. I itch and get all blobby if I eat gluten too Lisa but obvs not as bad as you; my joints puff up, especially my finger joints, they look like the witch's in Hansel&gretal. Other stuff, too. But my guts, oh my - not good.

I don't often say much about it, just choose gf options, nobody notices. I've done it for so long I know most ingredients. If I'm eating at friends' I'll say 'I'm not so good with gluten' and hope for the best (can't count how many times people have asked me if rice is OK)

!). BUT the difference is I can do that but you can't op. You have to know exactly what is in the food, whereas I might suffer if I inadvertently eat gluten, but you are really ill.

All I have on my medical notes is IBS: 'patient says she's cured'. Yes I am 'cured' if I don't eat gluten.

Oh I'd like to be on windchime's ward.

I have no diagnosis but have worked out that if I eat wheat or soy sauce I get a reaction. Mild if only a tiny amount is consumed, only severely toxic smelling wind that can clear a room. But if I have something like half a sandwich or a muffin it's accompied by diarrhea, bloating and a feeling of soreness in my digestive tract. Nothing on medical records though other than a reference to possible IBS around 25 ago.

But I digress. OP I tried to post a couple of days ago. Was going to say in your shoes I would limit time spent with these people and regard them as acquaintances rather than friends. I would also question wether they might try to feed you things you need to avoid. I've had people in laws do that because peppers give me indigestion and they think I'm just being awkward

Oh I am up at this time because I have inadvertently eaten gluten tonight and my stomach is so sore, my joints red hot and swollen and worse of all for me, the "Itch" has started!

I have no diagnosis, had bloods tested but my wonderful GP said, carry on being gluten free if you feel better.
I, too, am vegetarian though I suppose I should say I don't eat meat as I occasionally eat fish. (Feel bad about that but get a craving and think my body is telling me something) I may be fooling my self.
It's good to know there are others who are GF and veggie, I think as we are used to reading labels it's not such a shock mentally.
It's hard though, I miss being able to have choice in cakes, though as PP have said this is improving.
With regard to the OP's friends, I am aghast. Are people really so nasty? I said on another thread the other day, I often feel like an alien as no-one I am close too would ever behave like this.
I hope they behave nicely when you are away, you could do the I am very disappointed in you head shake that can sometimes work with small children. "I didn't realise how Ill-informed you are? Don't you know how to use the Internet, let me show you"
Going to try to sleep, but want to say, don't worry about them, you sound too nice to be their friend. Just shake your head and laugh to yourself
Rambling now sorry
Good night

It IS possible to be intolerant to wheat and still able to have other gluten, actually - "gluten" and "wheat" are not the same thing, not synonymous.

I have a friend who was diagnosed as wheat intolerant, by an actual doctor, yes a real GP just one who was a bit more openminded than some of you. She is not coeliac, nor is she intolerant to all gluten - but she IS intolerant to wheat. She came off it completely for a bit and many niggling problems she'd had (acne, grumbly guts, persistent cough etc.) just disappeared. She was unfortunate in living very close to a bakery and one morning the smell of the fresh bread was too much for her, so after having been wheat-free for a few weeks, she bought a half-baguette and ate it all in one go. The reaction was pretty instant and enough to convince her not to do it again - her mucous membranes all swelled up, including her eyelids, lips, throat, nose, cheeks and face in general. She was off work for 3 days until it calmed down enough for her to function. Not an anaphylactic reaction, but scary enough - luckily her airways never closed up completely or she could have been in real trouble. I saw her 2 days after it, I went to see if she was ok - and she looked like she'd had her face slammed hard into a wall.

OP - start eye-rolling back at the ignorance of your "friends". At least there are two of you now to back each other up in terms of what you can and cannot eat; so if necessary, you can split the group and you two go off somewhere more appropriate for you - the other two can do whatever the fuck they like.

Also, see how you go with the oats - although the gluten component of oats (avenins) is fairly different from the gluten in wheat, barley and rye (all of which are very similar), some coeliacs still react to oats as well.

My mum has coeliacs and her dad did too.
She does not get bad symptoms like some coeliacs do but it is very real, I have always had stomach problems but my blood test was negative and my GP just said you don't have coeliacs and that was that.
I know you can get a false negative blood test and to be honest not sure if I should go back.

Figures show that for every diagnosed coeliac in the UK there are another 8 who are not diagnosed.

So on wind chime's ward, for every diagnosed coeliac that she grudgingly allows a topping on their potato, there are eight more who are getting exactly the same serious gut damage from eating gluten. Some of them don't know, some of them are simply aware that certain foods affect them and try to avoid them. Wind chime and other selfish people will be damaging those people's health and making them feel bad.

And that's just the coeliacs. Non-coeliac-gluten-sensitivity is a real condition, proven by research, and is a growing area for research. An awful lot of people are adversely affected by various foods.

Those of us who (like me) can eat anything and stay reasonably healthy should be grateful. And we should be considerate to those of us who (like two of my DC) are made seriously ill by particular foods. It doesn't take a lot to simply be pleasant and let the coeliacs get on with what they need to do without making them feel bad about it FGS.