Coeliac and Gluten Free Tweetup, 11th July 2011 – a summary of points

Well I thought the first one went well and I thought the second one went well too, and we had some new faces, which are always welcome.

We kicked off with a discussion about terminology and its misuse – coeliac disease being described as a ‘gluten allergy’, for instance. Should we make a point of correcting this?

* Ruth from WhatAllergy thought yes, as there is a big difference between allergy, intolerance and coeliac.
* John of GFLifeIreland, Annie SupperClub, and Sian GlutenFreeMrsD all found it frustrating.
* Sian confessed to using the word ‘allergy’ to get point across when abroad – and BooCakes agreed it’s effective in UK too.
* Annie thought coeliac should always be explained in auto-immune context.
* There was some agreement that it was a little hypocritical to use ‘allergy’ and then tick off the media for getting it wrong.
* VJ made the point that the word ‘disease’ in coeliac disease was offputting to many, and John agreed he would prefer another expression – although he wouldn’t want to have to spend the time to explain autoimmunity.

What kind of effect might terminology confusion / lack of understanding be having in society?

* Annie thought word ‘allergy’ has been devalued, in a sense – widely taken to mean ‘I don’t like’ something.
* Mark (Crazysmudge) pointed out that allergy is only taken seriously these days when qualified by ‘peanut’.
* Annie added that ‘glutenfree’ could be going the same way towards misuse / abuse: using the example of media bigging up tennis player Novak Djokovic’s performance thanks to his gluten free diet.
* Ruth said too many people claim allergies then order an allergen-filled dessert … and Annie agreed this caused problems wrt chefs/waiters
* A wise point from John: “If you have to explain the condition, you shouldn’t be eating in the restaurant” (because there’s always a cross-contamination concern)

BooCakes asked whether the increase in interest in GF a good or bad thing?

* On balance, said John – good, though he has mixed feelings
* Annie: “Raises public profile, maybe leads to more options, but also muddies water…”
* There appeared a general conclusion that the mainstreaming of GF had ‘buoyed the market’ and made life easier in terms of food choice for all.

There was lots of talk of a future meet up….

* A central London park / picnic, said Sian?
* Lots of murmurings of agreement from many gftweetuppers at that…
* Caroline Sugargrain said there’s a BBQ going on in South London early September…
* A weekend towards end of August / early September?

Favourite GF foods proved a popular discussion… Here are some that were mentioned:

* The Cake Crusader’s lemon drizzle cake
* Dietary Specials Pizza, Ciabatta brown rolls and Cornish Slices
* Honeybuns Bakery caramel shortbread
* Salute pasta
* TruFree custard creams
* Debbi & Andrew’s Harrogate sausages
* Tesco’s Chocolate Macaroons
* Hale and Hearty Chocolate Breakfast Cereal
* Baked to Taste Cheese and Onion Pasty
* Isabels Doughballs Free From Pizza Bases
* Daura / Estrella lager
* Mongozo Beer (a new one to many)

Other random business:

* Waitrose boosted GF sales from Djoko effect
* The Cake Crusader put out a shout for #sbs (small business Sunday) on Twitter, from TheoPaphitis, and recommended it for other GF small businesses.
* Sian recommended Pod outlets

I think that’s it, but apologies if I’ve missed something out. Feel free to comment if so – and to discuss next tweet up – and a future meet up!


  1. MalSannie

    Thanks for doing this, can't wait for the next one 🙂

  2. Michelle

    Oh no! Just realised that I missed it… Having tweeted it for the last two weeks, I was finishing some web updates and completely forgot!!!
    It sounds like a great Tweetup – well done all – on to the next one….

  3. Ruth Holroyd

    Another great tweetup Alex. Thanks for chairing. I just tried to do a pdf print download for you again but it's not picking up all the tweets. The freebie thing I used stops at 2000 tweets – just shows we were much busier than last time. I wont spend too long but I dont' like to be defeated. If I find a good solution I'll forward you the pdf so you can offer it for download for people who missed it.

  4. Alex G

    Thanks all. Don't worry Ruth – I'm sure people can catch up either with the write-up above or by searching for the #gftweetup hashtag on Twitter itself.

  5. Allergy Luxe

    Thanks for the blog, I just found it today when i was reading Ruth's blog. Congratulations on making the top 5! Thats great stuff!

  6. Alex G

    Thanks very much!

  7. Jackie Mitchell

    What a great discussion. I find that most restaurants don't understand the term 'intolerance' – it's only the word 'allergy' they seem to get. One of the issues is that many waiting staff aren't English speakers. On one occasion when I explained about being gluten free, the foreign member of staff looked through the menu trying to find it!

  8. Gluten Free Guerrillas

    Great discussions! Great to also hear the same great usual companies as gluten free heroes. Let's hope more follow suit and Leon et al continue to pave the way for easy gluten free eating. There also seemed to be a lot of buzz about Fria GF bread. We loved this at the Gluten Free show at Olympia. Has anyone noticed it in any mainstream supermarkets yet?

  9. gluten free desserts to buy

    Thanks for the great ideas! I can't wait to do something special.

  10. Alex G

    Thanks all for extra comments everyone – glad you've found it useful.

    Regarding Fria – I am in touch with the PR and will make some enquiries and blog about it later, perhaps. It'll be a few days as I can't currently access my emails, but hopefully next week I'll have some answers!

  11. DCAllen

    A friend sent me this line. Very informative. I wish I'd known about this group earlier. I also find it frustrating that coeliac disease is confused with an allergy, but it's almost impossible to make a waiter understand in a foreign country (outside the UK and Ireland where servers in restaurants are usually prepared) what you mean by coeliac disease. Often I find myself sighing and saying "I have a gluten allergy." And then they understand. Oh well. I suppose in the end, the effect is the same.

  12. Alex G

    Hello! Have you been to Italy? Another one of our regulars, Gluten free Mrs D, seems to think awareness there is excellent. (I'm Italian but have no experience of ordering GF as I'm a wheatie.) Anyway, the 'group' is pretty informal on Twitter, so do come join us next time – probably around end August. Will post details here.


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