so what am I?

jen100 · Joined: 30 Jun 2008 Posts: 3

I know I am, but not diagnosed...so what am I?

I've been gf for about 3 months but not officially diagnosed.
I'm having a difficult time with how to refer to myself or explain myself to others.
I am positive I have either celiac or a gluten sensitively because of the postive results not eating glutens and the negative results each time I have allowed myself glutens.

My full story...I have a sister who was diagnosed with celiac and my parents opted for genetic testing. My father's test results stated that all of his offspring would have one of the genes (I forget which), so I know I have the gene. I was diagnosed with fybromyalgia and IBS many moons ago, which have many of the same symptoms as celiac. My celiac blood test was negative and (kick myself in the behind) I didn't get the biopsy done but went gluten free instead.
I have had many improvements and now react quickly to glutens the few times I decided to test it out. I've also been amazed to find all the hidden glutens - often the hard way after the fact. Smile

Anyways....anyone not diagnosed, but gluten free what do you say when others ask or get way too concerned about you not joining in with all the glutens at potlucks ect...????

aklap · Joined: 02 Oct 2004 Posts: 8607 Location: WI, USA

Hi Jen,

Welcome to the board!

Well here's what I say..."My body does not tolerate gluten" or "My body does not do well when I consume gluten". I don't get into all the nitty gritty details unless they start asking. Then I'll tell them the story of my diagnostic journey and my lack of official diagnosis.
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Al

“We cannot all do great things, but we can do small things with great love.” Mother Teresa

NorthernElf · Posted: Tue Jul 01, 2008 8:35 am Post subject:

I just say I have celiacs. Do I ? I dunno for certain but my body sure acts like I do. Of course, now I can't get tested.

My main reason for saying this is that people (well, most people) get it. If I tell them I can't handle gluten and go into how I haven't been tested properly by my dimwit doctor, etc. - it becomes a long explanation to someone who probably doesn't really want to know that much about it !! Rolling Eyes

donald · Joined: 20 Jun 2008 Posts: 12 Location: san antonio tx

I just tell others that I have celiacs, rather than explaining gluten intolerance to them. I've been tested for most of the autoimmune disorders because of all my symptoms, but all came back negative or inconclusive. Celiacs is the only condition my docs didn't think to test for, I was told to try the elimination diet and see what happens.

GFPolarBear · Joined: 07 Mar 2007 Posts: 279 Location: WI

I am DX'd officially, but I basically explain it as "I can't have wheat, oats, barley, or rye because I can't digest them, and they make me very sick, even in tiny amounts." If they ask questions, I'm happy to elaborate on CD, but that works for most circumstances. Smile

superdog · Joined: 01 May 2007 Posts: 116

for me its easier to just say i am allergic to gluten, usually people dont know what gluten is so i say, wheat rye barley and oats. then people understand. at least thats what i do now, for me its easier and it makes it to where people understand. if they ask more questions then i will go into it IF they really want to hear it. dont know if this will help but it seems to do the trick for those i am not really close to. for those that are close i have already explained it to them, unfortunatly after my uncle knew he said lets go out for pizza--hahahahaha, i told him pizza is made from wheat, he said surely they can make one without it---hahahahahaha. i tried to explain some restaurants do but not that one, he seemed to think any place you eat could make gluten free anything:) guess some people just will never get it but you LOVE them anyways Very Happy

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Gluten is my cryptonite

ali · Joined: 09 Jan 2008 Posts: 56 Location: NC

I don't have an official diagnosis either, but between my 9 year old and myself, it's pretty obvious that we are at the gluten intolerant at the least.

I usually just say celiac disease, though. I've found that if I say "gluten intolerant" (like to the youth group leaders at church, girl scout leaders, etc.), people assume the effects are trivial (like too much grease making you queasy) and they aren't as careful with my daughter as they should be. People on the peripheral level don't really need to know the specifics of our medical records, anyway, so whatever gets the point across...
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