Coeliac Eliteism - who REALLY IS the most sensitive coeliac?

Hi guys,

Does anyone else get sick of this coeliac eliteism that seems to happen (especially in a large, non-coeliac run facebook group - not mentioning any names)? I'm talking about "I'm the most sensitive", "yeah, well I'm SO sensitive that I can't even touch bread through the wrapper", "well, I'm sooooo sensitive that I can't even see a wheat field without getting bloated"...

It does my head in!

We're all in the same boat, no matter how sensitive you are, so can't we all just get along?

Does this annoy anyone else, or is it just me?

7 Replies

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  • Hi ThatPandaGirl...just to you engage people here can you confirm you're not talking about this group..as I know we've had many refractory coeliac discussions etc. Ta

  • I get really pissed off by a forum which I know is run by a non-coeliac pretending to be 'coeliac' it's all ooohs and ahhhs and bad advice. I've reported them to Coeliac UK yet they do nothing. Anyone can say what they like online. It's amazing..

  • Don't know about the 'Most Sensitive Coeliac' but I might qualify for the 'Only Coeliac in the Village' award!

    Sometimes feels like Little Britain.

  • LOL Phil so true..we may blog about this...

  • I think this is very interesting because as a coeliac who can not eat codex malted products or oats because of their gluten content I see my self as an outcast and not part of some elite crowd.

    To me a coeliac is a coeliac full stop regardless of their sensitivity.

    Coeliac have their own pshycological perception/ definition of gf so if a coeliac like your self can tolerate codex malted cereals etc. Then to you the label 'Gluten free' is immensely important because it is your anchor to what is safe for you to eat.

    If on the other hand a coeliac like myself is made ill by the low gluten in codex wheat, malt etc then I can not precieve of these foods as gluten free because of their gluten content. So my perception of gf is different to yours.

    To me gluten is the enemy of all coeliac, which's why our definitions are so important to all of us. So we are in the same boat.

    This about walking past a wheat field or picking up ordniary bread is a dig. As gluten being in the atmosphere is an urban myth used to justify allowable levels of gluten in gf food in my opinion. Gluten is plant protein and is not air borne. Look at the problems nut allergy suferrers would have if plant proteins were air borne.

    Lastly I am sorry that you feel there is a them and us with coeliac like me.

    Jerry

    And to Fionoa's question: if the hat fits.

  • Fiona, I am in NO way talking about the group here!

    I was referring to the facebook coeliac masses, all of whom seem to believe that if you can/can't tolerate certain things that you are somehow less of a coeliac than them!

    Recently there was a discussion on what "score" everyone got when they were diagnosed, which deteriorated into a ruckus about who was, essentially, the best coeliac! At one point, someone actually accused me of being a "fake" coeliac.

    All I am saying is: most of us were very ill, most of us had to undergo a barrage of tests and accusations of IBS and similar before getting here, and most of us took what seemed like forever to recover. We should all be working together to make our lives easier, not trying to establish a hierachy!

  • Oh, and on the subject of plant proteins being airbourne, I know what you said is true, but once (in my early days after diagnosis) I went on a brewery tour with the youth group I co-run, and I was very poorly afterwards!

    I am also an anaphylactic nut allergy sufferer, and when someone eats a lion bar next to me on the train, I smell it and my throat goes very tight and itchy! It's a funny old life!

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