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Chef16

By Chef16
in Introduce Yourself / Share Stuff

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Chef16 Apprentice
Chef16
Posted

I have been gluten free for 2 years so I've gotten pretty good at explaining Celiac (and everything that goes with it) to people, but I have these two friends who just DO NOT get it! They are twins and they come from a household where they don't even think about what they eat. I have tried everything I know; explaining what happens to my body when I eat gluten, how I make most of my food, ect. Even after being friends for over a year, they still don't understand that I can't eat gluten, not 'flour'. Pretty much every day they offer me food, that I can't eat and don't understand why I don't take it. They think that I'm overreacting and I just need to get some pill for it (I wish! :P ). Does anyone have any ideas? No matter how hard I try, I can't make them understand and they think that I don't accept their food because I don't like them!

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mushroom Proficient
mushroom
Posted

Someone on this forum coined the term "rat poison" for gluten, that every time we look at gluten we see a rat poison label on it, and there is no way we would consider eating rat poison. You could substitute whatever you want, arsenic, Round-Up, dog poop, whatever would completely gross you out or kill you, and give this analogy. Maybe they will get the idea if you can graphically describe the effects it will have on you if you have even one crumb of it, and that there is no antidote for it. If that doesn't get across to them, consider finding new friends. :rolleyes:

summerteeth Enthusiast
summerteeth
Posted
Someone on this forum coined the term "rat poison" for gluten, that every time we look at gluten we see a rat poison label on it, and there is no way we would consider eating rat poison. You could substitute whatever you want, arsenic, Round-Up, dog poop, whatever would completely gross you out or kill you, and give this analogy. Maybe they will get the idea if you can graphically describe the effects it will have on you if you have even one crumb of it, and that there is no antidote for it. If that doesn't get across to them, consider finding new friends. :rolleyes:

I use "shards of glass" and explain that that is what my stomach feels like afterwards. For people who just "don't get it" or think it would be okay for me to take "just a little bite", I get graphic. Then they get it. ;)

tarnalberry Community Regular
tarnalberry
Posted

I would just be boringly repetitious. "Sorry, I can't have gluten. I don't want to be sick for two weeks."

  • 2 weeks later...
G-freegal12 Contributor
G-freegal12
Posted

Think of the most vile, discusting, gastrointestinal discription of what happens to you, add a lot of exageration and tell them when they offer you something. :lol: It's acctually really, really fun to watch their faces shrivel up in that "Ohmanthatssogross" expression.. :rolleyes: Start with "when the vile thing wriggles it's way down my throat it..." then get creative.

gfp Enthusiast
gfp
Posted

Some people will not and never will 'get it'.

Quite a few people here have the same problem and the best answer I can give is "At least you choose your friends".

I lost some of my oldest friends because they just couldn't (or wouldn't) get it.

>>Someone on this forum coined the term "rat poison" for gluten,

That was probably me: However Rat poisons are usually a lot less bad for you than gluten.

Strychnine used to be given as a medical drug where the lethal dose was about 32mg and under 5mg considered safe.

My father takes more Warfarin (a strychnine deriviative) a day than I could eat gluten in a weak...

Squidge Newbie
Squidge
Posted

Tell them it's like a very sensitive allergy. They wouldn't expect someone allergic to peanuts to eat even regular M&Ms because of cross-contamination. Also, make them do research on it. I'm lucky, all my friends are chemists and chemists really understand cross-contamination.

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misslexi Apprentice
misslexi
Posted

I would get snippy with them at that point. Something like "would you shove peanuts at someone with a nut allergy?" obviously, they should say no (or you really need new friends!) then say something like "then stop shoving gluten at me! its the same thing!"

so many people don't get it. I haven't been gluten-free for very long, and I already know its going to be hard. people don't understand how something they eat every day of their lives can make someone else so violently ill.

  • 4 weeks later...
Martok42 Rookie
Martok42
Posted

How close are you to these friends? Is it not close enough that you wouldn't mind if you stopped hanging out with them? My suggestion, find smarter friends. No offense intended, just saying. That's what I would do.

  • 3 months later...
Rebecca Madrid Newbie
Rebecca Madrid
Posted

Okay, I know this post is old but I wanted to comment.

I was away at school in NL and I'm from ON. After 6 months of severe illness following over a year of minor symptoms, I finally took it upon myself to find the problem. eventually I started getting better really slowly, but living off dining hall food was chalk full of cross-contamination issues. Needless to say it has been a slow recovery.

Now to the point, I lived in a house with 100 people who liked to ask questions, make funny faces, etc. This kinda got to be routine after a while, and I got accustomed to the repetitive answers we've all used. But my roommate just wouldnt get it, she was rude and ignorant. She'd get frustrated when I wouldn't split on a pizza, like i was an inconvenience to her.

Usually when I got sick I would spend the night on the bathroom floor so as not to wake her. Next time dining hall got me, I was not nearly as courteous. I stayed in the room that night, and after almost 8 hours of waking up to me being violently ill, she finally realized the severity and stopped acting so oblivious.

Obviously this is not advice in any form, I just thought I would share the hilarious way in which i helped my roommate to understand.

The advice I do have is, try to be patient, its hard to understand if you've never been there, and look for people who have more in common with you. For example, my new roommate has a peanut allergy so she is really respectful of me as I am her.

  • 3 weeks later...
stef-the-kicking-cuty Enthusiast
stef-the-kicking-cuty
Posted

I've had so many "friends" in the past, that I thought, were really good friends, only to find out, that they "just don't get it". Even though at first it really hurt cutting off the connection, I am now happier and glad, I did it. I was at the point, where I thought, I'd rather have only one friend, but therefore a good friend. So I started saying good bye to some. And guess what, I got new friends, who really understood me. It really hurt at the beginning and you won't forget that fast, but it's worth doing it every time.

kareng Grand Master
kareng
Posted

It's the annoying relatives that are harder to cut out. They have a way of popping up at family gatherings. :)

poiuyanthony Newbie
poiuyanthony
Posted

they're idiot

just say you can't have it

they wont understand about the molecular breakdown in the villi anyways

so when they ask why just say i cant eat gluten

and ask them to please stop offering you food if they cant get it right

maybe one day...

  • 1 month later...
trilobitian Newbie
trilobitian
Posted

Oh my gosh I know what you mean!!!

I have one friend who thinks you can "cook the gluten off" on like grills and stuff. That burning it off "kills it" and that even if someone touched my food after they touched someones bun without washing their hands that it wasn't "like it's that sensitive anyway"

I feel bad that I have to say something so obvious like "you can't just kill off the gluten by raising the temperature because gluten isn't alive. The idea of sanitizing is for things that are alive. Gluten isn't alive or dead, it just is."

And "yes, it is that sensitive. It can seriously hurt me."

I get so frustrated!

  • 1 month later...
Mike7 Newbie
Mike7
Posted

In a situation like this have you tried telling them that you are seriously "allergic" to gluten and that gluten is in most foods. They must understand that if someone is seriously allergic to peanut butter, they can die from eating it. Try that and hopefully it will shock them enough to never offer you gluten-packed snacks again...unless they are are incredibly twisted with understanding the human body.

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
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    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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