Calling All Ambiguous Status Or Ncgi People....becoming Comfortable With Ambiguity

[BlessedMommy]

NCGI/not categorized gluten-free people, let's talk about ambiguity and the issues that stem from it!   What are you doing to help yourself feel comfortable with the need to advocate for yourself, despite your lack of definite celiac DX?

 

I had a great talk with my MIL today. I explained to her that due to the severity of my response to the gluten trial and therefore the inability to finish celiac testing, that's it's extremely important to me to treat this like celiac and be just as careful as if I had a definite doctor's note. I told her about some of the things that I had recently learned about how to do gluten-free correctly (when I first went gluten-free, I didn't have a lot of guidance) and she was so receptive to it all and understood!

 

It was such a relief to me to be honest about my needs. A lot of times I shrink from being direct with people about my expectations for fear of being mocked for being too OCD. I'm realizing that I'm starting to work into the groove of being more uncomfortable with my uncertain status and realizing that yes, it is okay to ask for celiac accomodations and be direct with people. 

 

So, share your experiences. How are you learning to advocate for yourself and be comfortable with your status?

[sweetsailing]

I have just told everyone I have celiac disease.  The details and lab testing is irrelevant to most people and they would be bored to listen to the details.  Why do we feel the need to explain ourselves?  If someone says they have heart disease or had a heart attack, do we expect for them to provide the results of their stress test and angiogram?  I honestly don't think people care that much.

[NatureChick]

It really isn't anyone's business what your "status" is. You are in no way obligated to share any of your personal medical information with anyone, and I personally think that it is, in many ways, in bad taste to do so. If you can start thinking of it that way, "how dare they ask you such personal questions", perhaps you can feel a bit stronger when it is required that you advocate for your needs. 

I'm not talking about not sharing with close friends and family who are sincerely concerned about your well being. I mean that you shouldn't have to declare when you were diagnosed or with what in order for someone to take you seriously. If they want to be all judgy and know-it-all, that is their problem.

You are not defined by not being able to eat gluten. It is not who you are. It is something you do in order to stay healthy, not much different than drinking enough water, eating fruits and vegetables, or getting exercise.

[BlessedMommy]

Right, the main people that need to understand are close family members and friends whom we interact with on a regular or semi-regular basis. Even with them, it's hard for me to discuss it sometimes.

 

I absolutely agree that my medical history is none of the waiter/waitress's business. I usually say that I have a severe gluten intolerance or a wheat allergy or something to that effect when dining out and ask that they be careful when prepping my order.

[chocominties]

I dealt with lazy/ignorant gastros for the last few years who all thought I was making stuff up when I said that gluten set off my ulcerative colitis and made me bleed.  (Because I want to take up an expensive and inconvenient diet just for funsies?)

 

I moved back to where the original gastro who dxed me is, and told him what happened when I ate gluten (and why I stopped eating it).  He said, "That sounds like celiac, so I'm going to call it celiac."  And it just felt great to have it made "official" and not feel like I have to lie or tell people the long story of why I couldn't get diagnosed before going gluten-free.  I did tell some people I'm "celiac" before, but that was just for simplicity's sake. 

 

I don't think I would use the word "celiac" when eating out, however.  I would (if I ever ate out anymore) just say, "Gluten makes me extremely sick."  Assuming there's a gluten-free menu.  Otherwise I might say "wheat."  In Japan I had to say I had a "wheat allergy" because gluten isn't even a thing and no one knows what celiac is. 

 

I DO think that being "official" makes more people take it more seriously (family or friends--mine still don't even take my UC very seriously, though) and not think of you as one of the "fad diet" Gluteneers.  I think some people (like my gastros of past who listened to my symptoms and just scoffed) still won't care.  YMMV, of course.

[across]

I really admire those of you who can live with the ambiguity! I'm planning to have the biopsy because the ambiguity is just too hard for me.