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What To Do When People Dont Listen?


hh73

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hh73 Apprentice

What do you do when people insist that you eat, when they cant *really* verify they made is gluten-free, but they insist that it *is* gluten free. For example, I have a very motherly mom, and she could not verify that the spices she used to make yesterday's meal were gluten free, but she was absolutely stubborn and self-confident that they were gluten-free. I know that they were not, because I have been feeling extreme fatigue (my one and only celiac symptom) since eating her food yesterday.

How do you deal with this from the social point of view? Some people cannot accept that this is a *strict* diet and they think its better to gluten us rather than face facts! They don't want to accept they made have made a mistake as a host!


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kareng Grand Master

Likely if they were plain spices, they were gluten-free. If they were a packaged mix, like a chili seasoning, they might not be gluten-free. The problem with her even slicing you an apple, is that her kitchen stuff is cc'ed. The cutting board she cuts the apple on - she cut bread on this morning. Her colander that she washed the strawberries in is also used to drain pasta. She had the pot of gluten-free beef stew simmering on the stove while she mixed flour to make biscuits, next to the pot.

My mom absolutely does not listen to anything anyone says 80% of the time. I have tried to explain why I won't eat at some place or don't want her potato salad (but the ingredients are gluten-free!) many times. She doesn't remember or "remembers" that I said I can have eggs & potatoes. With her this applies to everything. She could ask my son about his football game, and the next day ask me the same question or tell me what she wanted to hear. Its not Alzheimer's its just she is not paying attention. I try to distance myself from anything having to do with food with her.

So: other people are not responsible for your health and special diet. Inform your mom, firmly, that you will bring all the food or your own food, or some combination of that. You go to a party, eat ahead or bring a dish that's filling that you can eat. I like to bring twice baked potatoes. I either grab the first ones out of the pan or bring a separate dish with mine in it. Its filling and not too unfriendly.

tarnalberry Community Regular

I don't eat the food. Period. It's not my fault if they choose to feel upset over it; they make that decision all on their own. I will say something like "No thanks, I'm going to pass." No room for questions, no room for debate - simply your choice to not eat the food. (Though it's usually nice to add something like "I do really appreciate the thought, though. It looks lovely.")

bluebonnet Explorer

i just don't eat over sparing their feelings (moms included). moms generally want the best for you but if they don't fully understand the disease they don't *know* what the best is for you. so you just gotta be tough and more insistent then they are. EVENTUALLY they'll get it. :) oh and give them information overload.

Reba32 Rookie

Yeap, they either get it or they don't. I've tried to explain to family that I can't have even a single crumb of bread to touch my food, and then they'll serve lunch and put the gluten free bread and the "regular" bread in the same dang basket! And stick the crumb filled butter dish in front of me and then ask why I'm not eating.

hmph...

So, you take your own food, and say you don't want to seem rude or ungrateful, but you really enjoy their company, and so that you can stay a bit longer to chat, you brought your own so you're not distracted by pains in your gut. ;)

When I go to my sister's house, I try not to touch anything. At all! I'm even scared sometimes to have a cup of tea!

Maybe eventually they'll get it.

fran641 Contributor

It is a challenge to live in a different food world than most people around us. I have a dear neighbor that we always had lots of meals with. She usually invited us because she doesn't go out much. Once I couldn't eat what she cooked it took the fun out of it for her so we were invited less and less. We took food over for the dinners a lot but that didn't fill her need to feed. I hate that it turned out that way but I'm ever so grateful to be gluten free and feeling like a new person physically. I recently had a biopsy that showed no sign of disease! yeah! I've been doing this since Dec. 08 and it is working. Don't give up it is so worth it.

Ahorsesoul Enthusiast

There are people you just can't make understand. Either do not eat at their house or bring your own food. You choice is to hurt their feelings or hurt yourself. They will get over their hurt feelings without a health risk. You might not.

I do go to family/friends houses for dinners. I just do not eat their food. I bring some gluten-free food (i.e. casserole) and/or dessert. I share with them, eat my food and have a nice social time without an unhealthy risk. Everyone I know knows I will not eat their food. It's a rule. They have learned to accept this.


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jackay Enthusiast

I think it is difficult for others to understand because they don't have the physical ramifications of this that we do. I don't know how understanding I would be it I didn't have this. My friends and relatives accept me bringing my own food at least. However, like many others, I get invited to meals and to go out to eat less and less.

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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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      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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