Honesty Vs Glutening

[ThisIsMyUserName]

So I have Non-Celiac Glucose Intolerance, but appear to be exceedingly sensitive (can't eat at a table where others are eating bread because crumbs get in, can't reuse pots that cooked gluteny things, etc.) with horrible celiac-like symptoms. When I told people I had NCGI, I got a lot of "Oh, you're one of those self-diagnosed gluten avoiders" and (at first) getting glutened at people's houses and restaurants when told something is "gluten-free" but wasn't and (more recently) people getting insulted if I choose not to eat or bring my own food. I started telling people I have "some version of celiac" and things have gotten much better; haven't been glutened in weeks, people have been very good about understanding and respecting when I put my health above social norms. But I feel dishonest, and it seems potentially disrespectful to those who have an actual autoimmune disease, which I appear not to. Some research suggests that NCGI may be celiac before it gets bad, but who knows? So, am I good to just say celiac or am I breaking some important rule?

[kareng]

As a fully diagnosed Celiac (off the chart blood tests, every biopsy completely "flattened" and enough Celiac genes for several people) I have 2 things to say about this -

 

1.  I don't want you to think NCGI when it might be something else.  So keep a look out for patterns or other things that might be your problem.  

 

2.  As long as you are as strict as a Celiac needs to be, call yourself Celiac for the purposes of eating out or with others.  Don't let me catch you crying "Celiac!  Give me gluten-free food" and then see you drinking a regular beer with it!  or having a bite of someone's birthday cake!  

[ThisIsMyUserName]

That's fair! I will say that if you catch me taking a bite of birthday cake, you'll catch me throwing up everything I eat for the next week, so I'm in with you guys 100%. :-)

[nvsmom]

LOL

 

I would just say that you cannot eat gluten for health reasons, because you will become sick if you eat it.  You could also state that you were tested for celiac disease and now have to eat gluten-free.  Let them assume what they want.  

 

Or just say that you were diagnosed NCGS and must eat gluten-free on the advice/orders of your doctor.  All very true.  

 

Don't take risks with your health just because other people are ignorant of the health issues that affect your life.  After a few months, when they see you are strictly gluten-free and feeling better, they'll back off... or at least most people will.

[liz824us]

Based on my experience, people don't really understand the difference and I generally just say I'm allergic to gluten and have to eat a gluten free diet or I become ill. My doctor diagnosed my symptoms as gluten allergic but he didn't do any testing, so I don't actually know what my status is and neither does he. I do, however, maintain a gluten free diet because the consequences of straying aren't pleasant!

[bartfull]

You don't owe anything to anyone but yourself. If people won't take you seriously, tell them you have celiac. Or tell them you are allergic to wheat. Tell them anything you have to. Tell them if you eat that thing you will be throwing it right back up and spending the rest of the evening in their bathroom. Whatever it takes.

[cyclinglady]

I was diagnosed as a celiac two years ago but my husband was not. He has been gluten free for 14 years per the poor advice of my allergist and his GP. He refuses to do a gluten challenge and I can not blame him. It just makes it easier to say we are both celiac.

[RMJ]

Say whatever is needed to keep your food safe!

[Chef Oonagh]

As RMJ says, say whatever you need to say to keep yourself safe.  If you feel awkward saying celiac disease when you are ncgs then just say doctor told me to follow gfd.  But as Karen says don't say celiac disease to restaurant and then eat wheat cake or beer. I work with restaurants to improve their gluten-free (now gluten sensitive menus - thank you FDA for making it more difficult while protecting industry).  It makes it difficult when someone demands gluten-free but then actually eats wheat cake. I've had restaurants tell me that. I normally say during a talk that say to the server even a wheat crouton lifted off my salad will give me the worse case of food poisoning/throwing up immediately (bit of an exaggeration for some, not all) and they understand.

[PCB]

In the UK we celiacs are grateful to non-celiac gluten avoiders. Since last year restaurants have to list allergens and many have gluten-free menus, which suggests that more than 1 percent of the population is avoiding gluten. The U.S. Is usually ahead in these things and I guess your labelling of food products is as good as ours with gluten-free prominent on packs and jars. I simply say I have to be gluten free and that is accepted,. As others have commented, you must be consistent or you will undo all the good work and goodwill that has got us here!

[BlessedMommy]

I will say something like, "Is that food/dish/etc. safe for celiacs?" or will state that I follow a celiac diet or a strict gluten free diet for serious medical reasons and must avoid all of it. I also say to the server, "I'm not on this diet by choice, it's actually necessary, so please tell the kitchen staff that and have them take the necessary precautions."

[Nikki2777]

 I normally say during a talk that say to the server even a wheat crouton lifted off my salad will give me the worse case of food poisoning/throwing up immediately (bit of an exaggeration for some, not all) and they understand.

 

I know we're all different in how we react.  One of my concerns is that my reactions generally come an hour or two after being glutened, and I fear that if someone messes up (intentionally or not) and doesn't see me running into the bathroom immediately following, that I was 'faking it'.  This only reinforces their carelessness (intentional or not) for the next person with Celiac or NCGI.  I tend to say, "I won't react here, but it will be very, very bad at home and for the next three weeks".

[Feeneyja]

I think this is a difficult one. I'm dealing with it with my 9yo daughter. Those that know she was celiac negative think I'm overreacting. It's a lot of educating others I guess. And bringing your own food. It's hard, though, with a child. They don't have the confidence to stand up for themselves to family and friends who just don't understand.

I personally think that they will someday find a link between celiac and NCGS.

[bartfull]

"I personally think that they will someday find a link between celiac and NCGS."

 

I have absolutely no scientific evidence to back it up, but I agree with you.         

[nvsmom]

Ditto.  There's no proof yet, but I believe that celiac disease may just be an intestinal manifestation of autoimmune based gluten sensitivity.  That's just my theory though.