Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Annoyed By People Who Think They Know More
0

10 posts in this topic

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.

0

Share this post


Link to post
Share on other sites


Ads by Google:

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

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.

0

Share this post


Link to post
Share on other sites

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 .

0

Share this post


Link to post
Share on other sites

:blink::blink: 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. :blink:

1

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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!

0

Share this post


Link to post
Share on other sites

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. :)

0

Share this post


Link to post
Share on other sites

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. :lol:

0

Share this post


Link to post
Share on other sites

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 !!

0

Share this post


Link to post
Share on other sites

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??

1

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,092
    • Total Posts
      920,314
  • Topics

  • Posts

    • WOW.  That looks eerily familiar.  Last December the temporary provider here at my local (rural) clinic gave me doxycycline to experiment with, but it was a mere ten milligrams.  Lol, no wonder it didn't help!  I'm glad you're feeling better.
    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

    There are no registered users currently online

  • Member Statistics

    • Total Members
      61,123
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined