[Rosco]

I wanted to start a thread about one of the least talked about and shared aspects of gluten intolerance, celiac's, or other food related intolerances or allergies for that matter.

That is, about the social implications of such a condition.

Below is part of an article I wrote about "Our Story". I end with a question, rather than an answer and I would love to hear some of others people's experiences with regard to how their food requirements have affected how they relate to other people, how it effects them socailly, etc, and some things which have helped them.

Educating The Family.

This was not something we had given much thought to at this stage but it was to prove one of the biggest challenges of our whole journey with gluten intolerance.

My family was understanding as celiac disease was in the family. I had experimented a little with gluten free cooking as when one of my uncles who was celiac came out from the UK, I liked to make him a gluten free dessert.
It was my husband’s side of the family where some would prove to be a bit of a challenge as well as some friends.

We visited these particular relatives of my husband’s who seemed to have no understanding of what it meant be gluten intolerant.

Early after my diagnosis, we were invited to a BBQ at a relative’s house and there were sausages and white bread, none of which were gluten free. I explained to them about my recent diagnosis but went ahead and ate the sausages and bread thinking that a little would not be a big deal.
I was also several months pregnant with our second son so I was felt a little off anyway sometimes during the pregnancy.

We finished lunch, which I did not particularly enjoy and left about an hour later. During the drive home I vomited in the car and felt quite ill and bloated for a few days.

I had been on the gluten free diet for a couple of months and I suppose my system had got use to not having gluten.

When we were invited to another family get together at this particular relative’s house, there was more people and therefore more food with greater variety.

Although there was food I could eat, such as fruit and vegetables, there was nothing specifically gluten free. I had not been expecting it though as I had not yet talked to my niece about my intolerance.

At a later stage though we did get a chance to talk to her and her husband about it and explained it was serious enough to cause stomach cancer if I kept on eating food containing gluten.

We left it at that thinking we had made some sort of an effort to explain and that next time there me be something that I could eat when we were next at their place.

Some months later, we went to their place for another get together and as they were putting out the food, my nephew looked at me and said, “ I don’t think there is anything you can eat here.”

This took me back a bit as I was kind of expecting something to eat. Like we had driven an hour and a half to get here now what could I do? What would I eat?

I managed to find some carrots and celery amongst the salads which would fill a hole, but that was it.

Now there were three elements to this experience.

Firstly, did I explain what the extent of my intolerance meant to my relatives? Did I explain that although I could not eat things containing gluten, I still needed to eat of course, so I needed to have food that did not contain gluten.

Secondly, was I expecting others to take responsibility for my food intolerance even though they may not understand what a food intolerance was and how harmful gluten can be to me?

Thirdly, were they thinking I was just being overly fussy or rude for not eating the food they served up for me? It was not a special occasion for me as such, but they did invite me and they did know that I had a food intolerance.

I would love to hear of your experiences and thoughts.

Regards,
Rosco.

[BonnieP]

Hello Roscoe

I can definitely empathize with your situation. All of us with food allergies, gluten intolerance, celiac disease, etc. have been there! Let me address each of your questions.

Firstly, did I explain what the extent of my intolerance meant to my relatives? Did I explain that although I could not eat things containing gluten, I still needed to eat of course, so I needed to have food that did not contain gluten. [B]Yes, you did all that, but rarely do people understand what gluten is and/or where it can 'hide'. People mean well, but they just don't understand the extent to which it appears in foods; they kind of understand that you can't eat bread, but then don't stop to think about a breaded coating on foods. Or, they'd never in a million years know intuitively that gluten could be in ketchup or used as an anti-caking ingredient in grated cheeses.

Secondly, was I expecting others to take responsibility for my food intolerance even though they may not understand what a food intolerance was and how harmful gluten can be to me?In my humble opinion, you cannot and should not ask others to take responsibility for your 'illness'. It is your issue to deal with, not theirs. Some close friends/family may take a personal interest in your plight and try to accommodate your needs, but you if you expect that, you will be disappointed. I plan ahead: call the host and ask what is being served. If they ask you for a recommendation of a food that would be ok for you, then suggest something easy. For example, if they're serving BBQ chicken, ask them to hold aside 1-2 pieces of chicken that has not been marinated or basted with the BBQ sauce. In addition, I always bring my own food with me wherever I go. People are not offended and if anything, it creates a curiosity and helps others better understand the foods that you CAN tolerate.

Thirdly, were they thinking I was just being overly fussy or rude for not eating the food they served up for me? It was not a special occasion for me as such, but they did invite me and they did know that I had a food intolerance. [B]They were probably totally confused as to why you didn't eat the foods being served. Again, the list of gluten containing foods is very large and if you don't have to abide by such a diet, there is no way to expect others to be aware of the offensive foods. If you frequently attend family gatherings with a consistent group of people, you may consider offering to provide the hosts with simple lists of gluten free foods. But, don't expect them to serve a completely gluten free meal for the whole group. BTW, if you would like such a list, let me know...I'd be happy to share mine with you.

Happy Eating
Bonnie

[Rosco]

Hi BonnieP.
Thanks for your advice here. Early on I think I was expecting others to feel sorry
for me. Sometimes I think because I now can't eat all those yummy looking things like
cakes - which I am sure is better for me that i don't anyway.

I would love to see your list of GF foods. I will PM you my email address.

Thanks.

[darlindeb25]

Firstly, did I explain what the extent of my intolerance meant to my relatives? Did I explain that although I could not eat things containing gluten, I still needed to eat of course, so I needed to have food that did not contain gluten.

To begin with, yes you did, but can they understand the true meaning, unless they are gluten intolerant? Not often! In my family, only some understand. My mom gets it, only because she cooks for my dad, my brother in law gets it, because my sister is celiac--my own kids do not always understand, and I have been celiac for 8 yrs. It's hard to understand when you do not have to eat gf yourself. Myself, I do not even trust others to not cross contaminate me. They do not understand the significance of simple things, like not using the same spoon to stir with, or not using the same chopping boards, etc. It's not that they don't care, they just forget, and aren't thinking. It's so easy to make us ill. It's much easier for us to make a dish or 2 to take along, much safer, and makes the day much more enjoyable for everyone.

Secondly, was I expecting others to take responsibility for my food intolerance even though they may not understand what a food intolerance was and how harmful gluten can be to me?

Only you can take this responsibility on, it's no one else's job, unless you are a child!

Thirdly, were they thinking I was just being overly fussy or rude for not eating the food they served up for me? It was not a special occasion for me as such, but they did invite me and they did know that I had a food intolerance.

Exactly, if they planned this event for you, then yes, they should accomodate your lifestyle, I never say diet! BUT, if it is a family get-together, then of course, you do not want to be left out, just always plan on taking something to eat. Our family get-togethers always include bringing a dish or 2 to pass, always have, so I would plan on bringing something gluten free anyways! I never go to eat, I go to enjoy my family and friends.

I do not live to eat, I eat to live!!!!!