Annoyed By People Who Think They Know More

[Googles]

I am annoyed by people who think they know more than I do about MY celiac disease than I do. I work at a place (residential facility) where I have to eat with the youth I work with. The kitchen people tried to convince me that they could provide me with gluten free food seeing as we had a youth who is gluten free. Apparently he went from gluten light to gluten free while he was here. They kept insisting that they could provide me with food. So finally I was like, okay, if they aren't making this kid sick, they may be able to provide me with food I can eat. So I tried to eat their food two different times. I ended up glutened each time. I know it came from there as there is nothing I eat besides there that doesn't come from my own gluten free kitchen. Last week the head of the kitchen tried to get me to eat more of their gluten free food. However, I stated that I wasn't going to. He kept insisting that I should eat it, and finally I told him that I had gotten glutened from the previous food prepared and so was not going to be eating it.

He got all offended and said that it must have been something else that had made me sick because they prepare gluten free food. He obviously doesn't understand CC. And that isn't surprising. But getting glutened makes me sick in a way that nothing else does (the combination of the symptoms). It was so annoying given that he kept insisting that I could eat the food they prepared. That it must be something else that made me sick. Ugh.

[Persei V.]

"There's clearly no gluten in it, how could you be glutened?"

I know what you mean, unfortunately. I explain politely that there's no such thing as "clearly there's no gluten" and even if there isn't any gluten the food made me sick anyway so I'm not eating it again.

[mamaw]

It is hard for people who don't have celiac to understand ,& then there are the ones who are a teeny bit educated & they believe they have all the answers.....For me, I would try to educate him & make him fall from his high horse!!!!! but that's me... I would explain or take in educational materials that show that the level at which one becomes ill from CC is very different from another person's level of tolerance... Some are very sensitive at the beginning but after going strictly gluten-free they think because they are not ill in 20 minutes from eating or digesting a bit gluten they can cheat.... While others like me became soooo much more sensitive through the years that walking past Auntie Ann's pretzel makes me want to throw up & pass out ....and of course we have the ones who just cheat wehn they feel the urge...no one cleiac is exactly alike , we are unique..

I say stick to your guns & say "NO to eating CC gluten-free foods...it's your health .

[Nor-TX]

The ones that drive me nuts are the ones who are not Celiac, not even Gluten Intolerant, but "they have read on the Internet...."

I have been gluten free for 5 years now but obviously reading something on the 'net overrules anything I might be saying.

Why is it all us older type females who take water aerobics think this is the time to share the most personal and private bits of information? Must be the lack of clothes that let's some devulge secrets I might only share with my doctor or husband. I told one lady I was having a rough morning and the reason for it... She loudly shared that information with the rest of the group and the instructor. For the rest of the class people kept saying, "are you ok" or "I'm sorry you are sick".

I think I am going to get a tatoo on my forehead that says. "No Aloe Vera will not cure my Colitis and no Acupuncture cannot cure my gluten intolerance"

Thanks for letting me rant.

[kareng]

This has nothing, directly, about Celiac or gluten but... My FIL is a dentist. Somehow that makes him qualified in all aspects of medical care. I remember being pregnant and him giving me medical advice about the pregnancy (not related to my teeth).

When I was diagnosed with Celiac, he had nothing to say. We figure he was in the bar for that class at all the dental conventions.

[LauraB0927]

I also work as a therapist at a residential program - even though I don't need to eat with the youth, we have frequent parties where all the staff and kids are eating and its a bit frustrating when I keep having to remind everyone that I can't be eating the food as they are shoving it in my face. Even if something is inherently gluten free I stay away from it. Once I ate the cook's potato salad at one of our parties (I even checked over the ingredients with him) and I still got sick.

In their defense, I have worked there for three years and ate all of the food and was only diagnosed with Celiac in May, so many of them are still remembering that I used to stuff my face with the amazing macaroni and cheese the cook makes.

In my experience, I see more kids in residential programs who are on gluten-free or gluten-light diets due to autism spectrum disorders or to help with behavior. I haven't come across a kid yet that was gluten free because he was Celiac or intolerant. I think this gives the food staff a false sense of security that they are providing actual gluten free food by not adding gluten ingredients. At least in my programs, the kids aren't getting sick because they're on the diet by choice, not by necessity. There definitely is a huge misunderstanding or lack of knowledge of cross contamination and maybe you should offer to do a training with the staff on how to make sure items are truly gluten free (you can gear it towards making it better for the kids, but you'll benefit in the end). If egos still stand in the way it may be more difficult, that's when you brown bag it like I do and go on your merry way. As you know, its not worth it to get sick just to appease someone else. Good luck!

[Googles]

Thanks everyone for letting me vent. I do take my own food. When I was there for the interview it ended up lasting four hours. They ended up taking me to lunch, but luckily they let me decide if I wanted to eat. As there would have been no comfortable way to explain why I couldn't eat their mass produced food. I know the kitchen staff went to the dietician with the kid. But knowing my experience and the experience of others on the board, that probably wasn't too informational unless they got really lucky. I think he has the idea that if the ingredients are gluten free, that is all that matters. I haven't done it yet, but i need to stock my office at work in case I get stuck there. I'm more interested in the winter when it snows, but really I could get stuck at any time (if there is no one to relieve me). Most of my coworkers are really cool about it, and my kids are cool too. They just like to ask me what I'm eating and what I eat when I can't eat wheat etc.

Side note: I brought a green bell pepper for lunch one day and now one of my kids is eating the green peppers they have for the salad bar as his vegetable. Usually they complain about having to eat their vegetables, but then very few teenage boys don't.

[Persei V.]

I think I have another one here: "Eat without the fear of being happy!" ~> my mother

"Think positive and everything will be alright!"~> my father who is in fact a doctor. At least he stopped telling me this after I decided to try a new restaurant in the very next day and I was really hungry, stuffed my face and got ill.

Yeah, you go think positive.

And nice to hear (most) people understand, Googles.

[cap6]

To Nor_Tx ("I think I am going to get a tatoo on my forehead that says. "No Aloe Vera will not cure my Colitis and no Acupuncture cannot cure my gluten intolerance")

LOL !!

[cap6]

It is frustrating when friends insist that they can cook gluten free. Well, maybe they can cook gluten free but can they cook cross-contamination free??