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
      103,880
    • Total Posts
      919,451
  • Topics

  • Posts

    • Celiac - How many symptoms can there be?
      Hi Everyone I am new here and wanted to see if anyone else is experiencing the same thing I am.  I was diagnosed positive for celiac in 2/2016 via biopsy from an endoscopy.  I was negative for blood work because I self-eliminated gluten 9 months prior; so I guess I had not antibodies register in my lab work.  Prior to 2/2016 I was having symptoms for almost an entire year.  Despite cutting out grains in general for 9 months, I would have a gluten attack at least once a month.  I have had a history of sinus, bronchial infection.  I remember as young as 17 getting sick but I always bounced back and was active in sports and working out.  But in the past year I developed the following symptoms - Sudden desire to pass out, nausea, headaches, heart palpitation, crashing exhaustion as if I was recuperating from the flu, wheezing in my chest. I was bounced around to an allergist at this and was told I was asthmatic and I had food sensitivities to dairy, nuts, corn or corn derivatives (including corn syrup) and grains.  so I cut everything out!  Despite cutting everything out I was still have episodes at least monthly, possibly cross contamination.  In April 2015 I traveled to the Carribean for 2 weeks,  I became very ill with a urinary tract infection, stomach bug and severe back pain with constant fever.  I was treated with antibiotics (Bactrim) for 10 days which did clear up the situation. I came home and dismissed everything to a coincidence.  Six weeks later the GI distress woke me up in the middle of night.  The pain was so excruciating that when I sat on the toilet thinking I had to go, I almost past out from the pain.  I lay myself down on the floor until it subsided.  The next day I contacted my primary and was immediately seen.  She referred me to a GI specialist but the appointment was not until August.  Then 2 weeks before my GI appointment they called and rescheduled for late September.  I saw him and by then I was feeling better; no epsides for almost 2 months.  So we did nothing.... boy did I talk to soon.  Immediately after the appointment I had an attack.  These were the symptoms: Nausea, crashing fatigue (as if I was hit with the flu), diarrhea, dizziness,, loss of appetite,  lower back pain, specifically in the middle; intestinal discomfort and body aches which lasted 10 days!! and abruptly disappeared, thank God.
      . I had to wait to see the GI until 1/2016.  Once I saw him he did labs which were all normal.  He checked my liver, kidney, pancreas, blood count which was all normal.  He also scheduled the endo/colonoscopy for end of 1/2016.  Speeding forward in time....since the Endo/Colonscopy procedures, I had attacks January through March which last 7-10 days each time.  I finally had a break for 2 months and today as I type this I am on day 6 of another episode.  What I wanted to see if anyone has experience the following.  For me each episode is getting worse with the following symptoms: Nausea (horrible), back pain on the left side both in the rib cage (the front and back) at times this pain also gravitates toward my left hip.  I also get diarrhea, bloating, intestinal distress, crashing fatigue and loss of appetite.  What really hits me hard is the rib cage pain that is in the front and back on my left side.  I will be seeing the GI doctor in August; but I am hoping to see him sooner Any input in reference to symptoms is appreciated.    
    • Depression / anxiety issues
      Hi all  10 weeks ago i was diganoised with celiac with blood work and a endoscopy. I have had the worst 2 years of my life that started with blood being in my stool everyday. I have always suffered with anxiety for as long as I can remember but I always just pushed trough it. I then I started having panic attacks, insomnia and major depression that I could not handle, I could not function, I lost my job because I could not leave my bed, I shaked as I lay in bed everyday uncontrollably. I met with a doctor who put me on lexapro (antidepressant) I finally gave in after 6 months and started taking them, they made me worst than I already was so I had to stop after 14 weeks. Fast forward to 15 months later and the symptoms still persists including the bloody stools, I was in and out of hospital every week and told I had all sorts of conditions, then the blood work and endoscopy Finaly discovered the celiac. I have been on the diet now for 10 weeks, the first week my anxiety went away, the horrible knot in my stomach that I have had everyday, the hot flushes, the tingling I had run trough my legs. This all left but only for a couple of days then it came back, the depression also lifted but has now came back, I have been more than strict with the diet, I check everything twice before I eat it, me and the misses have thrown away everything from our kitchen and replaced it with new things. I had my Vitiam levels checked and I'm deficient in b12, Vit D, all B vitiams. It's like one step Foward 2 steps back in tearms of healing, I know these anxiety / depression feelings are not me but I've had them for so long that I can't seem to see light at the end of the tunnel. The couple of days that they left me when incredible I felt human and alive. Just wondering if any of this has happened to anyone else with celiac or gluten intorlance. Any advice or hope In tearms of healing or am I to feel like this for the rest of my life (I'm 28) by the way. Thanks a lot   
    • So I've been glutened....
      That sounds like a plan JMG.  If things aren't working then make a change, hopefully a positive change.  It seems to me we have more noticeable symptoms sometimes after being gluten-free a while.  I made a mistake last night and ate some tuna canned in water.  It definitely wasn't boring.  I usually have more sense than to eat tuna canned in water but screwed up last night.  They canned  it in broth of some sort.  Ingredients say vegetable broth and soy.  Yuck, not good for me.  It sure tasted good though, just ouch.  I am not saying it had gluten in it, but it does have soy and some kind of unnamed veggie monsters.  So it could be soy, or carrots or some other disgusting vegetable that got me.   Not all celiacs have additional food intolerances beyond gluten, but some do.  My gut could testify to that.  Anyway, if you have bloating, cut out all carbs and sugar for starters.  And try peppermint tea or Altoids.  Over here we have something called Pepto Bismol that helps soothe gut pain and another neat thing called aspirin.  And gluten-free beer as needed.  
    • Gluten free apparently not helping entirely
      Jean, Maybe your boss can find you a job in the office for a while?  It's worth asking maybe? It's not easy being on constant travel with celiac disease but it can be done.  Your effort to find safe food is going to be harder than most but it is not impossible.  But if you can't manage it you should really think about getting a non-travel job.  Your boss may be willing to work with you on an office position, even if it's temporary.  That would give you some time to look for a local job and also eat a safer diet. It's really up to you to control your diet and make sure it is safe.  If you can't figure out how to  do that while traveling you owe it to yourself to figure a way out of the travel. Celiac disease isn't always fun and games.  Not always.   I hope you find a way to improve your circumstances.
    • Gluten Free baby food pouches?
      Anyone know of any baby food pouches that are gluten free?  We love to have them on the go for our kids (not just baby), but I have no idea which ones to get now!  We used to get Meijer brand and Plum.   Thanks!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,922
    • Most Online
      1,763

    Newest Member
    Barsch
    Joined