How do you label yourself? How do you feel about how other NCGS people label themselves?

[JM12]

I'm definitely gluten intolerant, but I do not know if it's Celiac Disease or not. Long story short, I've had a myriad of related health issues for as long as I can remember. After a lot of research, I found out last year it was likely gluten. I did a gluten challenge and my health plummeted to the worst ever and I had to stop after 4 weeks because the effect on my work and personal life was too great. I paid for a blood test at Quest Diagnostics and it was negative for Celiac. I realize that the gluten challenge may not have been enough time, and even with a negative blood test, it's still possible to get diagnosed through biopsy. I'm in my mid-20's and don't have health insurance, so I just went gluten-free and skipped further testing.

After going completely gluten-free, all my health problems improved. Night and day difference. I've been gluten-free for 3 months now (with some accidental glutening). I'm still improving, but I know without a doubt, it's gluten. When I have had the slightest amount of gluten, my symptoms flare for up to a week. Even when gluten-free, and I had "glutening" symptoms appear, I looked it up, and low-and-behold, I accidentally bought a brand of food that gives other celiacs problems b/c of cross contamination... 

 

So my question is, what is appropriate to say or not say when explaining my condition to others? I find myself in situations often where I'm eating at someone else's house or eating out with others. I just say "gluten intolerant", but when I eat out, I just always tell the restaurant I have a gluten allergy (it's the easiest thing for them to understand and prepare the food properly, without me needing to give more explanation). And of course I've run into the situation with some people that when I say "Gluten Intolerant", they say "that's not real, that's a 'hipster' trend", or "oh you can have a little bit of gluten", or "that's not as bad as Celiac's". Just frustrating, because I'm definitely on the sensitive end of the spectrum (probably because I'm still recovering). I have a good friend who's a Celiac and definitely isn't as sensitive as me with her reactions, but she's had her diagnosis since childhood. So in some social situations, I simply just say I have Celiac's Disease, because it's the shortest way and I don't have to explain the whole "oh well technically here's the story and deal". I mean, with any of my friends and family when we talk about it, I clarify that I'm not officially a Celiac due to incomplete testing but definitely under the umbrella of "can never eat gluten". Maybe I'll get the biopsy later, but even with insurance, it's not worth it to me to undergo even a 2 week challenge (considering the symptoms I get from just minor cross contamination)

 

What are your thoughts on how socially acceptable this is? Sometimes I feel like I'm "improperly labeling" myself. But at the same time, I'm frustrated of having to explain myself so much in inconvenient settings or certain people not taking me seriously, so unless you're a person I regularly interact with, I feel like you don't need to hear my whole story regurgitated & explained. My Celiac friend just told me to do what I've been doing, but I'm curious on this community's thoughts?

Edited April 4, 2020 by JM12

[Awol cast iron stomach]

Most of the time just say no thanks to any food offer and don't even give an explanation . I ate no thank you etc . You don't have to explain. Initially we feel the need to explain as food is so embedded in society. As time goes on you just say no thank you to the food . Honestly these days I just decline the food focused event all together. I use to feel obliged to attend and one day I thought you know what I just don't want to go -so liberating.

If it is easiest to say you are celiac then do that the exception is with medical staff and when meeting a real celiac. Real celiacs know DH and NCGS exist so you can be yourself. Those who are anti celiac, anti DH, and anti NCGS are that way regardless of what diagnosis we give them. Their issue move on.

For eating out  I will be honest don't do it whether celiac, ncgs, or DH most of us find it's best to avoid eating out altogether . Very few places get it right and many of us have other intolerances so quite frankly even a completely gluten-free restaurant served my other intolerances.

Good luck

 

 

[JM12]

On 4/11/2020 at 10:14 PM, Awol cast iron stomach said:

Most of the time just say no thanks to any food offer and don't even give an explanation . I ate no thank you etc . You don't have to explain. Initially we feel the need to explain as food is so embedded in society. As time goes on you just say no thank you to the food . Honestly these days I just decline the food focused event all together. I use to feel obliged to attend and one day I thought you know what I just don't want to go -so liberating.

If it is easiest to say you are celiac then do that the exception is with medical staff and when meeting a real celiac. Real celiacs know DH and NCGS exist so you can be yourself. Those who are anti celiac, anti DH, and anti NCGS are that way regardless of what diagnosis we give them. Their issue move on.

For eating out  I will be honest don't do it whether celiac, ncgs, or DH most of us find it's best to avoid eating out altogether . Very few places get it right and many of us have other intolerances so quite frankly even a completely gluten-free restaurant served my other intolerances.

Good luck

 

 

I didn't reply earlier so, 5 months later I figured I'd give an update!

I definitely way overthought this concept and I've found it to be a non-issue. 99% of the time when the topic comes up, I just say I can't eat gluten and that's that. I've found I haven't gotten any flak for saying gluten intolerant outside that one instance and of course on the internet. Most people surprisingly aren't even that familiar with celiac or NCGS. 

Thanks for the feedback!