Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Celiacs Who Don't Eat gluten-free Make It Hard For Me :(

Victoria6102

Recommended Posts

Victoria6102 Contributor
Victoria6102
Posted

I went to one of my friends graduation parties today. I only knew like 3 people there all of whom totally trust and understand the way I have to eat. They believe me and know how celiacs need to eat. But as we were eating there was a kid who didn't have a bun on his burger so we started wondering if he had celiac/NCGI. But of course I don't eat things other people cook so I had my own lunch. Then there wre some cake bites, and he went and got one. He asked why I wasn't eating one. I said "I have celiac disease" he replies "ditto." my mouth probably was hung open because I was so astounded that he was eating that CAKE. I said "you know that's CAKE right?" he said "yeah but I don't feel sick when I eat gluten so I just try not to eat a lot of it" my awesome brother goes "dude, you're killing your insides" . This kid didn't care because he doesn't have a reaction.

So all of this goes on in front of my friends. He eats the food cooked there, eats a cake bite, then eats a piece of graduation cake. All while I, a fellow celiac, look on in total horror as I imagine what's happening to his intestines. So it just frustrates me because people were looking at me, eating my gluten free salad and orange while he eats a piece of cake. People kept asking me "you're allergic to gluten right? So is that kid and he's eating cake" well its not that simple, ok??!! I know lots of teens don't care if they have celiac, they'll eat gluten anyway. This is the third out if three celiacs (besides me) that my friends have met, who eat gluten and don't care. No wonder they all doubt me. Like I said, some believe me but it must be hard for them to believe me when they've met 3 people who are nowhere near as strict as me. It makes it hard to spread understanding and awareness about celiac when so many people don't follow the diet.

Sorry just a little rant there...:)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Maggie Mermaid Apprentice
Maggie Mermaid
Posted

It's rather surreal when that situation arises. Hubby & I were at dinner with some people. One person was a healthcare professional; supposedly gluten-intolerant and has symptoms when she eats wheat. She even volunteered an opinion on a gluten-free baking mix. Anyhow, husband & I ordered gluten-free food and she ordered a sandwich with BREAD! And eats it. Very surreal. :blink:

dani nero Community Regular
dani nero
Posted

Tell your friends, he's an idiot. His luck will run out one day when he sooner or later gets really sick. Simple and easy. Lots of people don't get reactions UNTIL they go gluten-free (like me). Since he's never been gluten-free, he doesn't get reactions yet, but doesn't mean no damage is being done.

WinterSong Community Regular
WinterSong
Posted

So annoying, and it really belittles the disease. This happened to me once. I was at a restaurant with friends, and I was just drinking water. A girl mentioned she had a gluten intolerance, then proceeded to take a big bite out of a chicken wing. This place was clearly not gluten-free friendly.

<_<

MikeOhio Rookie
MikeOhio
Posted

*looks sheepishly at room*

I did that for quite a while. I'm not responsible for the grocery shopping in the house and don't have a lot of money for food. I'm trying to do it right now but there are foods I thought would be okay that I have to eliminate and the person that does do the grocery shopping doesn't always get the brand I asked for.

A lot of Celiac's are not well informed and don't know that small amounts of Gluten will harm them. My doctor just told me I had it and didn't give me very much information nor even really point me in the right direction.

JNBunnie1 Community Regular
JNBunnie1
Posted

*looks sheepishly at room*

I did that for quite a while. I'm not responsible for the grocery shopping in the house and don't have a lot of money for food. I'm trying to do it right now but there are foods I thought would be okay that I have to eliminate and the person that does do the grocery shopping doesn't always get the brand I asked for.

A lot of Celiac's are not well informed and don't know that small amounts of Gluten will harm them. My doctor just told me I had it and didn't give me very much information nor even really point me in the right direction.

Well, we are glad you're here! We have all the info you need. And I'm glad you're working on improving your diet.

It may seem like when we complain about Celiac people eating gluten that we're just being 'Moms' or being disapproving because someone is breaking the club rules. In reality, we just don't want anyone to be sick. We want everyone to be as healthy as they can. Feel free to ask away about any questions you have.

Victoria6102 Contributor
Victoria6102
Posted
  • Author

Oh yes, I'm not trying to bash anyone. I know it's hard for a lot of celiacs. It really takes a lot of research and basically time to figure out the lifestyle. But this kid knows it damages him, and he willingly ate the cake and gluten without even flinching. Like I said, I feel bad for him, knowing that hes being damaged very badly.

But for those who are trying, keep trying the best you can, you WILL get it right! Maybe you could go to the grocery store with whoevers in charge of it. Or make your own separate trip to the store to get your own food? Your health is important and you must do everything you can to heal up quickly:) best of wishes, and if you have any questions feel free to ask!:)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


robertwilburn35 Newbie
robertwilburn35
Posted

I look back and see that I was sensitive to gluten for a long time before I had an "episode." Then I couldnt figure it out for a while and when I did I really didn't know what I should or shouldn't have. I am still learning but I pay for my mistakes now more than when I didn't even know. Silly how that works.

Melissa Palomo Apprentice
Melissa Palomo
Posted

This is a big pet peeve of mine - people that claim disease/intolerance and then don't abide by the diet. But - while it annoys me I also kind of feel sorry for these people - because they're either in denial or don't understand the severity of the disease. And they're really only hurting themselves (well, and making it an uphill battle for us in some cases, but really the biggest person they're hurting is them self.)

butterfl8 Rookie
butterfl8
Posted

I so understand what you're saying. My mom, sister and I all have Celiac, but my sister doesn't get reactions like I do, and is not careful at all. So her in-laws can cook 'safely' for her level of sensitivity, but for me? I don't eat ANYTHING they have prepared.

Also, it's possible this other kid may not realize his current symptoms are gluten-related. My sister (who has a shared kitchen, two kids and a very busy life) was gripping about a persistant migraine. This as she's eating dinner consisting of hot oatmeal from Target. First of all, uh, nutrition? How is oatmeal a good dinner in anyone's book? But secondly, NOT GLUTEN FREE!!!! My input is no longer desired, as she doesn't react to as small levels as I do, therefore, I'm a freak. My advice is not needed. Sigh. It is something we'll have to deal with often, I have a feeling. But be happy in the knowledge you got this gluten-free lifestyle down! (And I love your brother's comment!)

-Daisy

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. dixonpete
      0

      Hookworm load planner

    2. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    3. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    4. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    5. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,090
    • Most Online (within 30 mins)
      7,748
    Jamie B
    Newest Member
    Jamie B
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.