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

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

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

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

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

*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

*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

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

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

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

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.

  • 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. - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

    2. - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

    3. - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

    4. - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

    5. - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,695
    • Most Online (within 30 mins)
      7,748

    Aanhmcbride
    Newest Member
    Aanhmcbride
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • xxnonamexx
      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • 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.