I was just wondering how many of you have a problem sticking to gf diet cos of friends slagging you and not understanding?

[Elspeth]

i.e. saying things like " thats just her and her mad diseases!"

[FionaGFG Administrator]

Elspeth you raise a good point that is often not discussed.

I believe a lot of coeliacs have the same issue and some will cave in under pressure yet obviously not want to admit to doing so.

Personally I have found that being diagnosed is a real leveller and you soon learn who your real friends are. I have had comments from:

'Why don't you investigate more places I'm fed up of always eating at X, Y, Z with you - I can't take you to other restaurants because of your gluten free problem!'

'I don't know how you do it I'd die if I couldn't eat cake - aren't you ever tempted to have a bit?' Reply: 'No - not when it makes me feel so ill? There's more to life than cake'.

to

'No don't be silly - I'll book my birthday where you can eat as well - how about ZIzzi as they do that GF menu don't they?'

Yes I have friends who make quips about GF. I get them try great tasting GF foods and explain what CD is really all about. Yet on the whole I avoid meeting up with any 'friends' that can't accept that I am a coeliac and so need to adjust my lifestyle accordingly. Yes some people can't get their heads around a disease they can't see or don't understand what auto-immune means or how a tiny breadcrumb can cause a problem. If you can put up with their ignorance - then you can still be friends as long as you realise they may never get your condition and always think (even if they don't say it) that you are being fussy. You soon learn to stop worrying what people think of you as a coeliac.

I say - go your own way. If your friends are true friends - they'll follow you where you can eat as they'll be happy to have your company anywhere you can eat. If they keep making comments - then discuss it with them. It's hardly a mad (or in your head) disease is it?! Perhaps it says more about your friends i.e. they are embarrassed by you having to ask questions about GF and don't understand the condition? It's worth discussing this with them & then if they don't change their ways I'd avoid them - especially if you are finding it hard to stick to the diet with them around. Obviously dealing with such comments gets easier the longer you are GF. My skin certainly seems to be getting tougher as does my capacity to grill Mgrs in restaurants on what is GF - how it's been cooked & what I can eat...

What do others find/ think?

[denvajade in reply to FionaGFG]

Hi there its just as you say, very sad that people can have such a low tolerance of us, I have people say similar things and like "oh just eat everything cause you probably be sick anyway" and you are no fun anymore as we have to worry what you are going to eat. not nice but as you say it sorts out true friends. cheers

[Hidden]

I think this is sad that you feel bullied into eating gluten because of peer pressure and I think that Fiona makes some very valid points in that your real friends do not want to make you ill and I agree with Fiona's attitude.

I think that it is hard at first because your friends and work colleagues were used to you eating pizza and whatever you wanted and now you fear being made ill and this makes us vulnerable. They also feel threatened as the status quo has changed.

One good way of dealing with people making fun of you because of your diet is to turn things around, for example by saying calmly and quietly when ridiculed over food you can not eat is ''with friends like you who needs enemies?'' to which you will almost certainly get the retort ''It was a joke'' to which you reply ''Oh it was so funny that I nearly laughed'' this will turn things around so that instead of everyone laughing at you they will be laughing at the person who started ribbing you.

It sounds to me as if you haven't been diagnosed long and are still adjusting and if you adopt an I'm OK you're OK attitude then your friends will soon accept your condition and as you make new friends they will only know you as a coeliac and it will get easier.

This is an aspect of being a coeliac that really interests me, the psychological side and I think that forums like GFG are great because we can talk about our issues with others who automatically have empathy with what we are going

through.

At the end of the day it is only ''their'' words and it's how ''you'' react to other peoples words which is up to you. And you have to stand up for you and your needs.

So good for you for raising this as it shows that you can rise above it.

[glitzygem]

My friends are quite understanding, and I even have a GF friend so we go out for meals and it's great cos I feel normal! But most restaurants have GF options, where I am anyway. I do now and again have people that are friends of friends who think I'm being fussy and an attention seeker, but I don't have the time for people like that so just ignore them lol! I would never not stick to my diet over what someone said, and if my friends were saying that to me, I would unfriend them. Hope you find friends who understand.

[FionaGFG Administrator in reply to glitzygem]

Good point Glitzygem. In fact you've reminded me that that a few friends of friends used to refer to me as 'oh yeah and what are you ordering what with all your allergies'...hmm hayfever and coeliac - I know not a lot of 'allergies' and only 1 is actually an allergy. After a while I thought why am I spending my time and hard earned money with these people I don't really know well nor care for. And why do I have to justify to them what I order or explain what CD is to them each time as if I've made it up or am being fussy. So I cut them lose and made it clear to my close friends why I wouldn't be coming out in a group with their friends and that I was just happy to see them instead. It's worked well so far. If I hadn't had coeliac I suspect I'd have just gone along mtg up with them when I didn't really enjoy their company so in a way CD did me a favour ; )

[Elspeth]

Thanks for your answers folks!

I think my problems stem from being diagnosed with CD 5 years ago at a routine diabetic clinic appointment where they decided to test everybody in the clinic that day! I didnt have any symptoms in fact I had the opposite of symptoms whereby I was constipated instead of the normal symptoms!

I only get slight symptoms still, indigestion and a crampy feeling in my stomach so as a result I still eat some gluten even though I am not supposed to!

I suppose my friends are kind of confused by this too! I have been gf for 4 weeks now though and am trying hard to stay that way!

I am also trying to be more organised so that it is easier for me to stay off wheat!

[FionaGFG Administrator in reply to Elspeth]

Elspeth - don't worry asymptomatic coeliacs are more common that you may think. I know many including myself who didn't have any real bowel problems before. I was diagnosed as I had nausea & dizzyness all the time. I thought I had an inner ear infection. I also used to be slow going to the loo and had lots of acid reflux. Since being diagnosed I've yet to experience a full blown glutening as many other coeliacs do thankfully. However I have bloated like a whale, had cramps, been constipated, broken out in rashes, felt hungover from no drink etc and still struggle to boost my low vitamin D, iron etc. So I hope this shows that a) everyone varies - we're not all picture perfect coeliacs with classic symptoms b) yet that doesn't mean we're not being damaged internally by eating gluten.

You'll no doubt find as many coeliacs do that the longer you give up gluten for the more severe a reaction you'll get when you do have it. Probably as the immune system has chance to recharge it's batteries and fight gluten head on when you then come across some. So I'd recommend you really are strict in avoiding it and just let what anyone else says bounce off your inner forcefield - so to speak! I now have no shame in grilling mgrs in venues, checking sauces etc. After all I don't want to go this long GF and then slip up due to something silly. Bear in mind where hidden gluten lies i.e. soy sauce, sauces, stocks, virtually any processed food. Read every label of everything you eat and drink and that way you should do well. After a while it becomes 2nd nature and you'll even do it when drunk.

[swarthy]

I am really shocked - I don't think I've ever had someone make comments about what I can and can't eat and if anything, I've always found them to be ultra supportive and thoughtful about food -

Occasionally some people forget (including my own family) - but that is more spur of the moment - nothing but support here from friends and colleagues and no-one has ever tried to get me to eat Gluten

[FionaGFG Administrator in reply to swarthy]

Hey swarthy that's great - where can we all pick up or rent people like yours? ; )

[swarthy in reply to FionaGFG]

lol - I don't know - but I do find it very sad that some people can be like that

[FionaGFG Administrator]

; ) Yes it is very sad. I often think it's odd and says more about their personalities. I know I was very ignorant of coeliac & gf before diagnosis. But if I'd met anyone with it I would have been intrigued and keen to know more. Even if I thought it was a faff on nights out with them I'd never have said it to them or tried to hurt their feelings. Coeliac really does sort the wheat from the chaff in terms of friends!

[KarenBC]

Hi all

same here for me. So called friends that come out with comments like 'can't you just have a bit' or 'there is only a dusting of flour but there is no gluten in it' or 'when will you be back on gluten then?' depsite the explanations. The worst bit is that it was the closest friends that made the worst comments and yet they were the ones who'd seen how ill I was before diagnosis and seen the endless tests I'd been through before getting a diagnosis.

My heart goes out to my daughter who is 10 and was diagnosed a year ago and has to faceless the heartless comments of children in her class and insisting friends and comments like 'just have a bit of cake, you're mum won't know'. Then the other ones that dangle a piece of bread in her face and make fun of her. Again all this despite having gone in and talked to her classmates on the subject during a biology lesson on the digestive system.

Fortunately there are a few very pleasant unexpected surprises from people that really go out of their way. And others that eventually come round to the idea and 'get used to it'.

When I'm in difficult situations though, I tend to just say that I've eaten or that my stomach is off because of a virus and wiggle my way out of 'making a fuss'. My daughter has also adopted this technique at school now and the other kids leave her alone more easily. It does help that there are two of us so we support and understand each other, even if I didn't have to see my daughter in the same situation. The important thing is that she is healthy now. People often ask me how I get her to stick to the diet. I don't. She does it all by herself because she feels so lousy if she has the slightest bit of gluten that she is never tempted and doesn't take any risks.

Its true that people forget to mention this part of the disease...

[Elspeth in reply to KarenBC]

Its true! Its the closest friends that come away with things like " oh its just you and your mad diseases!" I dont know if they think they are being funny sometimes maybe?? But it still hurts!

You are also right about some friends surprising you... I have one friend who always has something gluten free for me whenever we get together and so does her mother which I find amazing cos I am going to be 40 this year!

Kids can be so cruel too when they dont understand something but waving a bit of bread at her is going too far! Poor girl but good on her for sticking to it!

[FionaGFG Administrator]

I think there's always an issue here in that people can't understand how simple 'bread' & it's grains etc can be dangerous. There's so little publicity about CD they can't comprehend it. And as we've all discussed we'll often make excuses ourselves or not discuss it. Sometimes I wonder if we should have an I'm a Coeliac and I'm proud - or similar type day. Breast Cancer & other campaigns do v good at raising awareness sadly CD just isn't seen as sexy. If Movember & prostate cancer groups can do good stuff why not us..

Plus the name Coeliac. People can barely pronounce it. If ever a disease needed re-branding it was Coeliac Disease ; )

Oh and did you know in Sweden they test far more people and 2 in a class of 24 kids have CD. So it's chicken & egg - better diagnosis = more people with it (sad but handy) = more demand for GF places and food = more awareness = less prejudice & an easier GF lifestyle...

[Hidden in reply to FionaGFG]

Hi Fiona, I love the ''I'm a coeliac and I'm proud'' day idea.

''I'm a coeliac and I'm OK'' is how I see myself so maybe GFG should try and promote this during coeliac awareness week? I'm up for it.

There was a compost awareness week before there was coeliac awareness! I kid you not.

In Italy they test children for CD so they have awareness and coeliac are catered for over there.

I reckon as well as badges that say something like I'm coeliac and proud

we could have car window stickers there's people on ebay who print your message so it needn't cost much and look at the benefits that we the coeliac would gain.

GFG coeliac rock OK... or something like this would make other people ask whats a coeliac. (with the GFG web address)

Food for thought we could get someone who makes lapel badges and vinyl car stickers to quote for making custom window stickers/badges for coeliac and let them have a link on GFG so we can buy them direct? There are people on E-bay who offer to make custom stickers and lapel badges. I'll hapily check this out if you would like me too and it would be so that anyone could buy direct from the maker so it's non profit making to individual members of GFG just to keep things 100% transparent. as raising awareness IS the goal.

If you like this idea then I think that we should ask other members for input and take it from there.

[meanioni]

I find the blunt approach works and have explained that if I eat gluten, my immune system attacks my own body and long term can cause bowel cancer unless a strict diet is followed.

This tends to shut up the people who make silly comments, and if they continue I would say "no thanks I don't want bowel cancer".

The whole point of a true friend is they should support you and understand and frankly if they don't their not deserving of your friendship. Would you, for example knowingly try to make a friend who'd previously had a heart attack eat salty and fatty food, knowing it could harm them? So why is it alright for them to do it to you?

My take would be to have a heart to heart to them, explain that you don't appreciate them trying to force you to have something that makes you Ill and explain what it does to you.

If they still don't care or make fun, turn around and walk away. One thing I have discovered is that you go through many friends in your life - some of whom at the time seem best mates and later will change/disappear. True friends of which I only have a handful - I trust, care for me, are there for the long run and would never dream of doing anything to hurt me. They are rare.

[Jacks]

I'm in Meanioni's camp - I just say I don't want cancer. Actually the best thing that could have happened was I'd had a bout of projectile vomiting once just before diagnosis after eating a bit of pizza (don't tell, but I think it was the aided by the cheese!). It was quite spectacular so now people say how well I seem in comparison to then

[Hidden]

Detox = unscientific claptrap in my book. Sorry.

[Hidden]

I've found people are generally very supportive - I do get hacked off that when they bring in goodies at work they tend not to bring in a GF option (although some people do I'm glad to say). I did have somebody ask if I was cured and could I give up my diet now. D'oh!

In many ways, it has raised people's interest - so they are getting to know more. It's training people in the office about cross-contamination that is proving difficult. I think that it's helpful if you are proactive - so make sure people know. Also, keep your sense of humour - with the best will in the world, people will sometimes forget. I sometimes end up saying things like "Biscuits! Are you trying to poison me" and getting the reply "If I was going to poison you, I'd put something in your coffee!" I hope we're both joking.

If you friends can't cope with it - don't change your diet, change your friends.

[Regalbirdy]

Hi Elspeth.

I have been one of the luckier ones regarding friends and family. They have been very supportive and have accepted that I cannot eat out like I did before. We used to eat in loads of pubs and Indian restaurants; but we have now changed to Pizza Express in recent months instead (much easier for me!).

In the beginning I found it rather embarrassing having to question waiting staff when ordering meals out. I also found it embarrassing to have to refuse people offering hospitality in the form of biscuits, cakes etc. It is also true though – as time goes on, you do develop a thicker skin.

My overall take on the situation is: Eat gluten = be ill; Don't eat gluten = enjoy being physically and mentally well. To me that is a no-brainer - I choose gluten-free!

Unfortunately some of my former colleagues weren't always as understanding about my needs. Most were fine about it, but I did get disciplined by my manager for asking the restaurant who was doing our Christmas meal if it was gluten free. I was so hurt and angry at the time by her attitude. I felt I was only trying to look after my health needs. I just had to bite my tongue the best I could. Guess what? - I got glutened and was doubled over on the loo in pain by dessert. I chalked that evening up to experience!

You may find that your friends are quite confused at the moment because you have been sending them mixed messages for so long about whether you can eat gluten or not. That said, well done for turning over a new leaf. Stick at it because ultimately it is well worth it.

As the others have said, your true friends will adapt once they can see you are being consistent. As for those that don't, I would question the quality of your friendship with them. If you don't want to lose contact, then maybe go out for a drink instead (obviously don't have a beer though!).

Just remember you're not alone. All of us get these kinds of comments from time to time. I suggest thinking of each one as a training exercise. Mentally and verbally gently thank the person for the opportunity to practice explaining your needs; and for allowing you to improve the general awareness of your health condition. After a while the slagging offs should subside. Calmness is the key. Your friends maybe a little insecure of your friendship and could still be getting their heads around the new boundaries you have needed to impose. If they cross the line, calmly remind them that you haven't gone gluten-free for fun but because you must.

Good luck and take care.

[Hidden]

Thankfully the friend that I see the most - and stay with - is really understanding, and it has opened her eyes as to how much gluten is in everything. She seemed quite triumphant a few months ago when she produced a ready made meal in a red wine sauce, only to discover that the sauce had been thickened with flour. I have tried to instill in her mind that if she cooks for me like she ate when she was a youngster, fresh food, nothing processed and no gravy (I don't want her to buy GF gravy specially for me) then all will be fine.

However I have heard people say that they have no patience with people who have faddy ideas about food. They might find out one day!