Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,189
    • Most Online (within 30 mins)
      7,748
    Eric bell
    Newest Member
    Eric bell
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      My mo,ther married a bread making when I was 4

      By Jane878 · Posted

      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Blood results

      By trents · Posted

      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...