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Going To Parties.


Barbara.

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Barbara. Newbie

How do you manage going out to parties? We have many friends/relatives who invite us out to party occasions: birthdays, anniversary parties, showers etc. All know I have celiac disease (most do not fully understand it). I don't expect anyone to prepare special dishes for me. I generally keep it all low key and try to just eat things that I know are safe. I have run into attitudes because I am not eating what they have provided. Again, I politely explain I have celiac, but they seem hurt or slighted. Do you bring your own foods? eat before you go? I am starting to avoid social events because of the stress involved.


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Ahorsesoul Enthusiast

I eat before I go, bring food if asked and explain to them I here to enjoy the friendship and company more than the food. I do explain I'm unable to eat gluten and become very sick if I eat it. I have asked for recipes of items that the hostess or guests have brought that look good so I can make it at home with gluten free items.

If pressed further I have asked if I can stick a knife in their gut, because it what it feels like if I eat gluten. I only say this if someone is really giving me a hard time. Or I ask them if they will be the one driving me to ER and will they be willing to pay for the ER visit that will result from me eating gluten.

boysmom Explorer

All of the above. I've only been gluten-free for about 9 months now, and now that we have a gluten-free house all of my sons (ages 8-18) have displayed varying degrees of sensitivity as well. Currently 3 of the 5 of them have chosen to avoid gluten and the other 2 limit how often they eat it.

So far when we've been invited to someone's home, people have been sweet and understanding about it. We usually try to eat first, depending on the situation either a substantial snack or a meal so we're not tempted to eat something questionable because we're hungry. If it's something that requires a specific kind of food like a pizza party or birthday cake we'll take our own so we can eat with everyone there. Even if we've eaten ahead of time being face to face with something yummy that we don't do often is tough temptation for a kid! My dh's chocolate torte is good enough to make everyone else jealous of OUR food! ;) All the boys declared it better than any other birthday cake they've had. lol

If it's a snack-y event and everyone will just be noshing on chips and finger foods, I've brought along snack bars or a bottle of kefir smoothie so I can be 'eating' with them and then eat a real meal once I get back home.

I'm sorry you're running into attitudes. I try to judge my hearer and vary what exactly I tell them based on how interested they really are. I don't go into the whole celiac thing with some people because it's just too involved to explain and they really don't want to hear all about my medical history and bowel habits :P In those cases I will just say we have some food allergies (or food issues if I want to be more precise) and most people seem to be ok with that. No one faults a diabetic because they don't eat cake and ice cream at the birthday party. ;)

With family or closer friends, I do go into more explanation of the fact that I have celiac disease and how much better I am now and how sick eating gluten makes me, but I also assure them that it took me several months to figure out where all it could be hidden so I don't expect them to try to figure it out in time for dinner on Friday. lol I often offer to bring along something we can eat (mac & cheese, for example) to share, so that we're assured something safe to eat and they can see that our food doesn't have to taste weird or unsatisfying. If they're willing, I will look over the ingredients they used in preparation and try to sort out what parts of the meal would be safe for us to eat. A quick look around the kitchen can give you a good idea of how safe that is, for example if the kitchen is really clean and they use stainless pots, I'm going to feel safer than if it's dusty or cluttered and they use worn out old Teflon coated pans.

Don't let food get in the way of friendship. I'd even tell them that I don't want to allow the food to be an issue, and if you're worried about getting sick or already starting to feel bad while everyone is still visiting after the meal your focus is on your tummy and not your friends or family.

Be safe, be polite, and have fun!

tarnalberry Community Regular

I can't fathom the attitude. Just because someone cooked something doesn't mean that I have to eat it. What I eat is my choice, no one else's. Doesn't matter if I'm allergic to the food, intolerant of the food, just don't like the food, or happen to be full. It's just not their business what I eat or don't. Maybe my "I'm not hungry, thanks" or "I'm not interested, thanks" is sufficiently conversation-ending for most, but I haven't had much problem.

For parties, I eat before hand and bring my own food. If it's a sit-down type of affair, I will eat before hand, NOT eat my own food at the table (unless it's a friend who understands the deal and I know they're good with it, this would be for people I don't know well), but may eat it afterward if I need to. But that's just me, there's no right or wrong way - just what works for you.

sandsurfgirl Collaborator

One benefit to living in L.A. is that there are lots of skinny people who are watching what they eat at parties, so many people just graze on the veggies or walk around with a wine glass all night. I haven't been to too many things yet, but the ones I've been to nobody noticed what I was eating. A sit down dinner would be harder.

mndtrp Newbie

Pretty much everyone we would eat with knows about our situation, so they understand if my fiance doesn't eat anything. They usually try to have something that she can eat. She also usually takes along something she can snack on, and we've sometimes left in the middle of the party to get her something she can eat, returning after we have found something. So far, she hasn't had anyone give her any grief, most people seem fairly curious and interested.

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      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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    • cristiana
      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
    • EssexMum
      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
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